untitled h1
performance status criteria

| Karnofsky and Lansky performance scores are intended to be multiples of 10 Karnofsky (> 16 years of age) Lansky (≤16 years of age) Score Description Score Description 100 Normal, no complaints, no evidence  100 Fully active, normal. of disease 90 Able to carry on normal activity,  90 Minor restrictions in physically strenuous  minor signs or symptoms of disease. activity. 80 Normal activity with effort; some  signs or symptoms of disease. 80 Active, but tires more quickly 70 Cares for self, unable to carry on  70 Both greater restriction of and less time  normal activity or do active work. spent in play activity. 60 Required occasional assistance, but is  60 Up and around, but minimal active play;  able to care for most of his/her needs. keeps busy with quieter activities. 50 Requires considerable assistance and  50 Gets dressed, but lies around much of the  frequent medical care. day; no active play, able to participate in  all quiet play and activities. 40 Disabled, requires special care and  40 Mostly in bed; participates in quiet  assistance. activities. 30 Severely disabled, hospitalization  30 In bed; needs assistance even for quiet  indicated. Death not imminent. play. 20 Very sick, hospitalization indicated.  20 Often sleeping; play entirely limited to  Death not imminent. very passive activities. 10 Moribund, fatal processes progressing  10 No play; does not get out of bed. rapidly. PERFORMANCE STATUS:   |
|----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------|  
Karnofsky Score: ________ OR Lansky Score: ________
untitled h1
16.3 appendix iii quality of

PROMISTI4 Pediatric Item Bank v.1.0 - Physical Function - Mobility - Short Form 8a Pediatric Physical Function - Mobility - Short Form Please respond to each item by marking one box per row.  
| In the past 7 days….         | With no   | With a little   | With some   | With a lot of   |    |
|------------------------------|-----------|-----------------|-------------|-----------------|----|
| trouble                      | trouble   | Not able to do  |             |                 |    |
| trouble                      | trouble   |                 |             |                 |    |
| I could do sports and        |           | →               | →           | →               | →  |
| exercise that other kids my  |           |                 |             |                 |    |
| age could do.                | 4         | s               | 2           | i               | 0  |
| I could get up from the      | 口        | →               | →           | □               | □  |
| floor.                       | 4         | 3               | 2           | 1               | o  |
| I could keep up when I       | 口        | 口              | □           | □               | 口 |
| played with other kids.      | 0         |                 |             |                 |    |
| a                            | a         | 2               | 1           |                 |    |
| I could move my legs.        | 口        | →               | 口          |                 | 口 |
| 4.                           | 3         | 2               | 1           | o               |    |
| I could stand up by myself.  | □         | □               | □           | →               | →  |
| 3                            | 2         | l               | 0           |                 |    |
| 4                            |           |                 |             |                 |    |
| I could stand up on my       | o         | →               | →           | →               | □  |
| tiptoes.                     | i         | a               | s           | l               | o  |
| I could walk up stairs       | 口        | →               | →           | →               | □  |
| without holding on to        |           |                 |             |                 |    |
| aything.                     | 44        | s               | 2           | l               | 0  |
| I have been physically able  | 口        | o               | →           | n               | 口 |
| to do the activities I enjoy |           |                 |             |                 |    |
| most.                        | a         | 3               | to          | i               | o  |  
© 2009-2012 PROMIS™ Health Organization and PROMIS Cooperative Group PROMIS Pediatric Item Bank v2.0 - Anxiety - Short Form 8a Pediatric Anxiety - Short Form 8a Please respond to each question or statement by marking one box per row.  
| In the past 7 days…                       | Almost                                        | Almost    |       |        |    |    |
|-------------------------------------------|-----------------------------------------------|-----------|-------|--------|----|----|
| Never                                     | Never                                         | Sometimes | Often | Always |    |    |
| □                                         | □                                             | □         | □     | □      |    |    |
| I felt like something awful might happen. |                                               |           |       |        |    |    |
| 221922                                    | 2                                             | 3         | 4     | S      |    |    |
| →                                         | □                                             | □         | □     | □      |    |    |
| 713R1r                                    | I felt nervous                                | i         | 2     | s      | 4  | s  |
| □                                         | □                                             | □         | □     | →      |    |    |
| 271111111                                 | I felt scared                                 | 2         | 3     | 4      | s  |    |
| □                                         | □                                             | □         | □     | □      |    |    |
| 548                                       | I felt worried                                | i         | 2     | s      | 4  | S  |
| □                                         | □                                             | →         | □     | □      |    |    |
| 355511                                    | I worried when I was at home .                | 2         | 3     | 4      | s  |    |
| □                                         | □                                             | □         | □     | □      |    |    |
| 220Rir                                    | I got scared really easy                      | 2         | 3     | 4      |    |    |
| □                                         | □                                             | →         | →     | →      |    |    |
| 231111                                    | I worried about what could happen to me ..    | I         | 2     | 3      | 4  | S  |
| □                                         | □                                             | □         | □     | →      |    |    |
| 21566921                                  | I worried when I went to bed at night ....... | 4         |       |        |    |    |  
PROMIS Pediatric Item Bank v2.0 - Depressive Symptoms - Short Form 8a Pediatric Depressive Symptoms - Short Form 8a Please respond to each question or statement by marking one box per row.  
| In the past 7 days…            | Almost                                           | Almost    |       |        |    |    |
|--------------------------------|--------------------------------------------------|-----------|-------|--------|----|----|
| Never                          | Never                                            | Sometimes | Often | Always |    |    |
| □                              | □                                                | □         | □     | □      |    |    |
| I could not stop feeling sad . |                                                  |           |       |        |    |    |
| ICSR In                        | 2                                                | 3         | 4     | S      |    |    |
| →                              | □                                                | □         | □     | □      |    |    |
| 41R1r                          | I felt alone                                     | i         | 2     | 3      | 4  |    |
| □                              | □                                                | □         | □     | →      |    |    |
| 5041R1f                        | I felt everything in my life went wrong.....     | 2         | 3     | 4      |    |    |
| □                              | □                                                | □         | □     | □      |    |    |
| 5465R1r                        | I felt like I couldn't do anything right........ | l         | 2     | 3      | 4  | S  |
| □                              | □                                                | →         | □     | □      |    |    |
| TIRIT                          | I felt lonely                                    | 2         | 3     | 4      |    |    |
| □                              | □                                                | □         | □     | □      |    |    |
| 28R1r                          | I felt sad .                                     | 2         | 4     |        |    |    |
| →                              | □                                                | →         | □     | →      |    |    |
| rrrrrr                         | I felt unhappy .                                 | I         | 2     | 3      | 4  | S  |
| →                              | □                                                | □         | □     | →      |    |    |
| 1003A21                        | It was hard for me to have fun                   | 4         |       |        |    |    |  
© 2010-2016 PROMIS Health Organization and PROMIS Cooperative Group PROMIS™ Pediatric Item Bank v.1.0 - Fatigue - Short Form 10a Pediatric Fatigue - Short Form Please respond to each item by marking one box per row.  
| In the past 7 days……                       | Never   | Almost Never   | Sometimes   | Often   | Almost Always   |
|--------------------------------------------|---------|----------------|-------------|---------|-----------------|
| Being tired made it hard for me to play or | □       | □              |             | →       | →               |
| go out with my friends as much as I'd      |         |                |             |         |                 |
| like.                                      | o       | i              | 2           | 3       | 4               |
|                                            | →       |                | □           | □       |                 |
| I felt weak.                               | 0       | l              | 2           | 3       | 4               |
| →                                          | →       |                | □           | →       |                 |
| I got tired easily.                        | o       | i              | 2           | 3       | 4               |
| □                                          | 口      | □              | □           |         |                 |
| Being tired made it hard for me to keep    | □       |                |             |         |                 |
| up with my schoolwork.                     | o       | l              | 2           | 3       | 4               |
| I had trouble finishing things because I   | □       | →              | n           | →       | →               |
| was too tired.                             | o       | i              | 2           | 3       | 4               |
| I had trouble starting things because I    | o       | □              | →           | □       | →               |
| was too tired.                             | 0       | l              | 2           | 3       | 4               |
| □                                          | □       | □              | □           | □       |                 |
| I was so tired it was hard for me to pay   |         |                |             |         |                 |
| attention.                                 | o       | i              | 2           | 3       | A               |
| D                                          | □       | 口             | □           | □       |                 |
| I was too tired to do sports or exercise.  | o       | i              | 2           | 3       | 4               |
| □                                          | →       | →              | □           | →       |                 |
| I was too tired to do things outside.      | o       | i              | 2           | 3       | 4               |
| I was too tired to enjoy the things I like | →       | →              |             | □       | →               |
| to do.                                     | 0       | 2              | 3           |         |                 |  
© 2009-2012 PROMISTM Health Organization and PROMIS Cooperative Group PROMIS™ Pediatric Item Bank v.1.0 - Pain Interference - Short Form 8a Pediatric Pain Interference - Short Form Please respond to each item by marking one box per row.
untitled h1
in the past 7 days....

| In the past 7 days….           | Never   | AImost Never   | Sometimes   |
|--------------------------------|---------|----------------|-------------|
| I had trouble sleeping when I  | →       | □              | →           |
| had pain.                      | 0       | l              | 2           |
| I felt angry when I had pain.  | □       | □              | □           |
| o                              | l       | 2              |             |
| I had trouble doing schoolwork | □       | →              | →           |
| when I had pain.               | l       | 2              |             |
| 0                              |         |                |             |
| It was hard for me to pay      | □       | □              | →           |
| attention when I had pain.     | 0       | 1              | 2           |
| It was hard for me to run when | □       | →              | □           |
| I had pain.                    | 0       | l              | 2           |
| It was hard for me to walk one | →       | □              | D           |
| block when I had pain.         | 2       |                |             |
| 0                              | 1       |                |             |
| It was hard to have fun when I | □       | □              | □           |
| had pain.                      | l       | 2              |             |
| 0                              |         |                |             |
| It was hard to stay standing   | □       | □              | →           |
| when I had pain.               | 2       |                |             |
| 0                              | 1       |                |             |  
| Often   | Almost Always   |
|---------|-----------------|
| →       | □               |
| 3       | 4               |
| □       | →               |
| 3       | 4               |
| □       | □               |
| 3       | 4               |
| →       | 🙂              |
| 3       | 4               |
| →       | □               |
| 3       | 4               |
| □       | 🙂              |
| 3       | 4               |
| □       | →               |
| 3       | 4               |
| □       | □               |
| 3       | 4               |  
© 2009-2012 PROMIS TM Health Organization and PROMIS Cooperative Group PROMIS™ Pediatric Item Bank v. 1.0 - Peer Relationships - Short Form 8a Pediatric Peer Relationships - Short Form Please respond to each item by marking one box per row.  
| In the past 7 days….             | Never   | Almost Never   | Sometimes   | Often   | Almost Always   |
|----------------------------------|---------|----------------|-------------|---------|-----------------|
| □                                | □       | →              | □           | □       |                 |
| I felt accepted by other kids my |         |                |             |         |                 |
| age.                             | o       | l              | 2           | 3       | 4               |
| I was able to count on my        | →       | →              | →           | →       | →               |
| friends.                         | i       | 2              |             |         |                 |
| o                                | 3       | 4              |             |         |                 |
| □                                | □       | →              | □           |         |                 |
| I was able to talk about         | →       |                |             |         |                 |
| everything with my friends.      | 0       | l              | 2           | 3       | 4               |
| →                                | □       | □              | →           | □       |                 |
| I was good at making friends.    | 2       |                |             |         |                 |
| o                                | i       | 3              | 4           |         |                 |
| My friends and I helped each     | →       | →              | □           | □       | □               |
| other out.                       | o       | i              | 2           | 3       | 4               |
| Other kids wanted to be my       | →       | →              | □           | →       | →               |
| friend.                          | o       | l              | 2           | 3       | 4               |
| Other kids wanted to be with     | →       | →              | →           | →       | □               |
| me                               | i       | 2              | 3           | 4       |                 |
| o                                |         |                |             |         |                 |
| Other kids wanted to talk to     | □       | →              | □           | →       | □               |
| me                               | 0       | i              | 2           | 3       | 4               |  
© 2009-2012 PROMIS™ Health Organization and PROMIS Cooperative Group.  
16.3.2 Pediatric PROMIS Instruments Spanish (6)
PROMIS Pediatric v.1.1 - Depressive Symptoms - Short Form 8b Sintomas de depresión en pediatria - Cuestionario abreviado 8b Responde a cada enunciado marcando una casilla por linea.  
| En los últimos 7 dias...   |  Nunca           | Casi nunca   | A veces   | A menudo   | Casi siempre   |    |
|----------------------------|------------------|--------------|-----------|------------|----------------|----|
| No pude dejar de           | □                | 口           | 口        | 口         | 口             |    |
| sentirme triste.           | o                | 1            | 2         |            | 4              |    |
| Senti que estaba solo/a.   | □                | 口           | 0         | →          | □              |    |
| et fro                     | o                | 1            | 2         | 3          | 4              |    |
| Senti que todo me salia    | →                | □            | →         |            | □              |    |
| mal en la vida.            | 2                | 3            |           |            |                |    |
| o                          | 1                | 4            |           |            |                |    |
| Senti que no podia hacer   | □                | 口           | 口        | 口         | □              |    |
| nada bien.                 | 0                | 1            | 2         | 3          | 4              |    |
| Me senti solo/a.           | □                | □            | 口        |            | □              |    |
| PI IRRI                    | 0                | 1            | 2         | 3          | 4              |    |
| □                          | 口               | →            | 0         | □          |                |    |
| 2000                       | Me senti triste. | 0            | 1         | 2          | 3              | 4  |
| Me senti descontento/a.    | □                | □            | 口        | n          | □              |    |
| 71201                      | 0                | 1            | 2         | 3          | 4              |    |
| Me resultó dificil         | □                | □            | 口        | 口         | □              |    |
| divertirme.                | 0                | 1            | 2         | 3          | a              |    |  
Spanish (Universal)
27 January 2014
© 2009-2013 PROMIS Health Organization and PROMIS Cooperative Group PROMIS™ Pediatric Item Bank v.1.0 - Fatigue - Short Form 10a Agotamiento en niños - Cuestionario abreviado 10a Responde a cada enunciado marcando una casilla por linea.  
| En los ultimos 7 dias…              | Nunca                                   | Casi nunca   | A veces   | A menudo   | Casi siempre   |    |
|-------------------------------------|-----------------------------------------|--------------|-----------|------------|----------------|----|
| El cansancio hizo que fuera dificil | 0                                       | →            | →         | 口         | □              |    |
| 42382                               | para mí estar al día con las tareas     |              |           |            |                |    |
| escolares.                          | 0                                       | 1            | 2         | 3          | 4              |    |
| Como estaba cansado/a, me resultó   | □                                       | □            | □         | →          | □              |    |
| 421281                              | dificil jugar o salir con mis amigos/as |              |           |            |                |    |
| tanto como me habria gustado.       | 0                                       | 1            | 2         | 3          | 4              |    |
|                                     | 口                                      |              |           |            |                |    |
| Senti debilidad.                    | 口                                      | 口           | 口        |            |                |    |
| 01381                               | o                                       | 1            | 2         | 3          | 4              |    |
| n                                   | 🙂                                      | 😂           |           | □          |                |    |
| 227011                              | Me cansé fácilmente.                    | 0            | 1         | 2          | 3              | 4  |
| Tuve dificultad para terminar las   | 😂                                      | □            | □         | →          | □              |    |
| 422181                              | cosas porque estaba demasiado           |              |           |            |                |    |
| cansado/a.                          | 0                                       | 1            | 2         | 3          | 4              |    |
| Tuve dificultad para comenzar las   | □                                       | 口           | □         |            |                |    |
| 口                                  | 口                                      |              |           |            |                |    |
| 4220R1                              | cosas porque estaba demasiado           |              |           |            |                |    |
| cansado/a.                          | 0                                       | 1            | 2         | 3          | 4              |    |
| Estuve tan cansado/a que me fue     | □                                       |              | □         | □          | □              |    |
| 401082                              | dificil prestar atención.               | 0            | 1         | 2          | 3              | 4  |
|                                     | □                                       | □            | 口        | □          |                |    |
| Estuve demasiado cansado/a para     |                                         |              |           |            |                |    |
| GHR2                                | practicar deportes o hacer ejercicio.   | 0            | 1         | 2          | 3              | 4  |
| Estuve demasiado cansado/a para     | 0                                       |              |           |            | 口             |    |
| 00000                               | hacer actividades (a)fuera.             | 0            | 1         | 2          | 3              | 4  |
| Estuve demasiado cansado/a para     |                                         |              |           |            |                |    |
| 口                                  |                                         | □            | □         |            |                |    |
| 41 OCR 1                            | disfrutar de las cosas que me gusta     |              |           |            |                |    |
| hacer.                              | 0                                       | 1            | 2         | 3          | 4              |    |
| Spartsh (Universal)                 |                                         |              |           |            |                |    |  
25 February 2013
© 2009-2012 PROMIS™ Health Organization and PROMIS Cooperative Group  
| en     |
|--------|
| 412481 |
| ERI    |
| 22211  |
| e      |
| ER1    |
| 2911   |  
PROMIS™ Pediatric Item Bank v.1.0 - Physical Function - Mobility - Short Form 8a Capacidad de funcionamiento fisico en ninos - Movilidad - Cuestionario abreviado 8a Responde a cada enunciado marcando una casilla por linea.  
En los ultimos 7 dias…
Spanish (Universal)
26 February 2013  
| En los ultimos 7 dias…      | Con poca   | Con alguna   | Con mucha   | No pude   |    |
|-----------------------------|------------|--------------|-------------|-----------|----|
| Sin dificultad              | dificultad | dificultad   | dificultad  | hacerlo   |    |
| Pude practicar los mismos   | □          | □            | □           | →         | 口 |
| deportes y ejercicios que   |            |              |             |           |    |
| hacían otros niños/as de mi |            |              |             |           |    |
| edad.                       | 4          | 3            | 2           | 1         | o  |
| Pude levantarme del piso    | □          | □            | 口          | □         | □  |
| (suelo).                    | 4          | 3            | 2           | 1         | 0  |
| Pude mantener el mismo      | □          | →            | 😂          | →         | 口 |
| ritmo cuando jugaba con     |            |              |             |           |    |
| otros niños/as.             | 4          | 3            | 2           | l         | o  |
| Pude mover las piernas.     | □          | □            | 🙂          | 🙂        | →  |
| 4                           | 3          | 2            | 1           | o         |    |
| Pude ponerme de pie sin     | 口         | □            | 口          | □         | 口 |
| ayuda.                      | 3          | 2            | o           |           |    |
| 4                           | I          |              |             |           |    |
| Pude ponerme de puntillas   | □          | □            | 口          | □         | →  |
| (sobre las puntas de los    |            |              |             |           |    |
| pies).                      | 4          | 3            | 2           | I         | 0  |
| D                           | →          |              |             | □         |    |
| Pude subir escaleras sin    |            |              |             |           |    |
| aganame a nada.             | 4          | 3            | 2           | I         | o  |
|                             | □          | →            | →           | □         |    |
| He podido hacer             |            |              |             |           |    |
| fisicamente las actividades |            |              |             |           |    |
| que más me gustan.          | 4          | 3            | 2           | 1         | o  |  
PROMIS™ Pediatric Item Bank v.1.0 - Pain Interference - Short Form 8a Efectos del dolor en niños - Cuestionario abreviado 8a Responde a cada enunciado marcando una casilla por linea. En los últimos 7 dias…  
| Nunca                    | Casi nunca                  |    |    |
|--------------------------|-----------------------------|----|----|
| Me senti enojado/a       | □                           | 口 |    |
| cuando tuve dolor.       | o                           | 1  |    |
| Cuando tuve dolor, tuve  |                             |    |    |
| problemas para hacer     | 口                          | □  |    |
| las tareas escolares.    | 0                           | 1  |    |
| Tuve problemas para      | □                           | □  |    |
| RI                       | dormir cuando senti         |    |    |
| dolor.                   | o                           | 1  |    |
| Cuando tuve dolor, me    | 口                          | □  |    |
| fue dificil prestar      |                             |    |    |
| atención.                | 0                           | 1  |    |
| →                        |                             |    |    |
| Cuando tuve dolor, me    | □                           |    |    |
| on                       | fue dificil correr.         | o  | 1  |
| Cuando tuve dolor, me    | 口                          | □  |    |
| fue dificil caminar una  |                             |    |    |
| manzana (cuadra).        | o                           | 1  |    |
| □                        |                             |    |    |
| Cuando tuve dolor, fue   | n                           |    |    |
| rost!                    | dificil para mi divertirme. | 0  | 1  |
| Cuando tuve dolor, fue   | □                           | □  |    |
| dificil para mi quedarme |                             |    |    |
| de pie.                  | o                           | 1  |    |  
|  A veces   | A menudo   | Casi siempre   |
|------------|------------|----------------|
| □          | □          | □              |
| 2          | 3          | 4              |
| □          | □          | □              |
| 2          | 3          | 4              |
| □          |            | □              |
| 2          | 3          | 4              |
| 😂         | →          | □              |
| 2          | 3          | 4              |
| 😂         | □          | □              |
| 2          | 3          | 4              |
| 口         | □          | □              |
| 2          | 3          | 4              |
| □          | □          | □              |
| 2          | 3          | 4              |
| 0          | 口         | □              |
| 2          | 3          | 4              |  
Spanish (Universal)
25 February 2013
© 2009-2012 PROMIS™ Health Organization and PROMIS Cooperative Group PROMIS Pediatric Item Bank v.1.0 - Peer Relationships - Short Form 8a Relaciones entre iguales en niños - Cuestionario abreviado 8a Responde a cada enunciado marcando una casilla por linea.  
| En los ultimos 7 dias…   | Nunca                    | Casi nunca   | A veces   | A menudo   |  Casi siempre   |    |
|--------------------------|--------------------------|--------------|-----------|------------|-----------------|----|
| Me senti aceptado/a por  | □                        |              | □         | 口         |                 |    |
|                          |                          |              |           |            |                 |    |
| SOTBALL                  | los otros niños/as de mi |              |           |            |                 |    |
| edad.                    | 0                        | 1            | 2         | 3          | 4               |    |
| Pude contar con mis      |                          | □            | n         | 口         | 口              |    |
| SORERI                   | amigos/as.               | o            | 1         | 2          | 3               | 4  |
| Pude hablar de todo con  | n                        | □            | □         | □          | □               |    |
| SONARI                   | mis amigos/as.           | 0            | 1         | 2          | 3               | 4  |
| Me fue fácil hacer       |                          | →            |           | 🙂         | D               |    |
| 147R1                    | amigos/as.               | 0            | 1         | 2          | 3               | 4  |
| □                        | →                        | →            | →         |            |                 |    |
| Mis amigos/as y yo nos   |                          |              |           |            |                 |    |
| sensi                    | ayudamos.                | 0            | 1         | 2          | 3               | 4  |
| Otros niños/as quisieron | □                        | □            | □         | □          | □               |    |
| 2222                     | ser mis amigos/as.       | 0            | 1         | 2          | 3               | 4  |
| Otros niños/as quisieron | 0                        | □            | n         | 口         | n               |    |
| 210R1                    | estar conmigo.           | 1            | 2         | 3          |                 |    |
| 0                        | 4                        |              |           |            |                 |    |
| □                        |                          |              | □         |            |                 |    |
| Otros niños/as quisieron | 0                        |              |           |            |                 |    |
| 0001                     | hablar conmigo.          | 0            | 1         | 2          | 3               | 4  |
untitled h1
spanish (universal)

26 February 2013  
© 2009-2012 PROMIS Health Organization and PROMIS Cooperative Group PROMIS Pediatric v.1.1 - Anxiety - Short Form 8b Ansiedad en pediatria - Cuestionario abreviado 8b Responde a cada enunciado marcando una casilla por linea. En los últimos 7 dias...  
| Nunca                  | Casi nunca               | A veces   | A menudo   |  Casi siempre   |    |    |
|------------------------|--------------------------|-----------|------------|-----------------|----|----|
| Senti que podria pasar | □                        | 口        | □          | □               | □  |    |
|                        | algo terrible.           | 0         | 1          | 2               | 3  | 4  |
| Me senti nervioso/a.   | □                        | □         | 口         | n               | □  |    |
| ? TSRI                 | o                        | 1         | 2          | 3               | 4  |    |
| 27581                  | Senti miedo.             | □         | →          | 口              | □  | 口 |
| 0                      | 1                        | 2         | 3          | 4               |    |    |
| →                      | □                        | n         | 🙂         | □               |    |    |
| 5044R1                 | . Me senti preocupado/a. | o         | 1          | 2               | 3  | 4  |
| Me preocupé cuando     | □                        | □         | □          | 🙂              | □  |    |
| MENT                   | estaba en casa.          | 0         | 1          | 2               | 3  | 4  |
| Me asusté con mucha    | □                        | □         | □          | n               | 口 |    |
| zzski                  | facilidad.               | o         | 1          | 2               | 3  | 4  |
| Me preocupó lo que     | □                        | □         | 口         | □               | 口 |    |
| 231R1                  | pudiera pasarme.         | 3         | 4          |                 |    |    |
| o                      | 1                        | 2         |            |                 |    |    |
| Me preocupé al         | □                        | □         | 😂         | →               | □  |    |
| acostarme por las      |                          |           |            |                 |    |    |
| ICHO                   | nches.                   | o         | 1          | 2               | 3  | 4  |
16.3.3 parallel parent proxy promis
spanish (universal) 27 january 2014

PROMIS Parent Proxy Item Bank v1.0 - Physical Function Mobility 8 Physical Function Mobility - Short Form 8 Please respond to each question or statement by marking one box per row.  
| With a                                     |                                               |         |            |            |             |    |
|--------------------------------------------|-----------------------------------------------|---------|------------|------------|-------------|----|
| In the past 7 days…                        | With no                                       | little  | With some  | With a lot | Not able to |    |
| trouble                                    | trouble                                       | trouble | of trouble | do         |             |    |
| My child could do sports and exercise that | □                                             | □       | 口         | □          | □           |    |
| other kids his/her age could do.           | □                                             | -       | →          | □          | □           |    |
| PYZrcb22                                   | My child could get up from the floor ........ |         |            |            |             |    |
| My child could keep up when he/she         | □                                             | □       | □          | □          | □           |    |
| Preceding                                  | played with other kids .                      | 1.1     |            |            |             |    |
| □                                          | □                                             | →       | →          | □          |             |    |
| PYZv 0643                                  | My child could move his/her legs .            | □       | □          | □          | □           | □  |
| [10-10]                                    | My child could stand up without help ......   |         |            |            |             |    |
| My child could stand up on his/her         | -                                             | -       | →          | □          | □           |    |
| tiptoes                                    |                                               |         |            |            |             |    |
| My child could walk up stairs without      | →                                             | □       | →          | □          | →           |    |
| Provid                                     | holding on to anything                        |         |            |            |             |    |
| My child has been physically able to do    | □                                             | □       | □          | →          | →           |    |
| the activities he/she enjoys most          |                                               |         |            |            |             |    |  
PROMIS Parent Proxy Item Bank v1.0 - Anxiety 8
16.3.3 parallel parent proxy promis
anxiety - short form 8

Please respond to each question or statement by marking one box per row.  
| A Imost                                  |                                             |       |           |    |
|------------------------------------------|---------------------------------------------|-------|-----------|----|
| In the past 7 days…                      | Never                                       | Never | Sometimes |    |
| □                                        | →                                           | □     |           |    |
| THERE                                    | My child felt nervous                       | 0     |           |    |
| □                                        | □                                           | □     |           |    |
| P12accely2                               | My child felt scared                        | □     | □         | □  |
| 12 second                                | My child felt worried.                      |       |           |    |
| My child felt like something awful might | □                                           | □     | →         |    |
| Proposite                                | happen .                                    | □     | □         | □  |
| PS INSI                                  | My child thought about scary things ....... |       |           |    |
| My child was afraid that he/she would    | □                                           | □     | □         |    |
| make mistakes                            |                                             |       |           |    |
| My child worried about what could        | □                                           |       |           |    |
| □                                        | □                                           |       |           |    |
| happen to him/her.                       |                                             |       |           |    |
| My child worried when he/she went to     | →                                           | □     | □         |    |
| bed at night .                           |                                             |       |           |    |  
| AImost   |        |
|----------|--------|
| Often    | Always |
| →        | □      |
| □        | □      |
| □        | →      |
| →        | →      |
| □        | →      |
| □        | □      |
| □        | □      |
| □        | □      |  
PRO MIS Parent Proxy Item Bank v1.0 - Depressive Symptoms 6
16.3.3 parallel parent proxy promis
depressive symptoms - short form

Please respond to each question or statement by marking one box per row.  
| A Imost                                  | AImost                                     |       |           |       |        |    |
|------------------------------------------|--------------------------------------------|-------|-----------|-------|--------|----|
| In the past 7 days…                      | Never                                      | Never | Sometimes | Often | Always |    |
| □                                        | □                                          | □     | →         | →     |        |    |
| PISHES                                   | My child could not stop feeling sad        | .0    | 2         |       |        |    |
| My child felt everything in his/her life | □                                          | □     | □         | □     | □      |    |
| PTIANG                                   | wnt wrong                                  | 2     |           |       |        |    |
| My child felt like he/she couldn't do    | □                                          | □     | □         | □     | □      |    |
| Plication                                | anything right .                           | 0     |           |       |        |    |
| □                                        | □                                          | □     | □         | □     |        |    |
| P Source                                 | My child felt lonely                       | □     | □         | □     | □      | □  |
| My child felt sad.                       |                                            |       |           |       |        |    |
| ressed                                   | □                                          | □     | →         | □     | →      |    |
| POLIC                                    | My child thought that his/her life was bad |       |           |       |        |    |  
PROMIS Parent Proxy Item Bank v1.0 - Fatigue 10
16.3.3 parallel parent proxy promis
fatigue - short form 10

Please respond to each question or statement by marking one box per row.  
| A Imost                                    | Amost                             |       |           |       |        |    |
|--------------------------------------------|-----------------------------------|-------|-----------|-------|--------|----|
| In the past 7 days…                        | Never                             | Never | Sometimes | Often | Always |    |
| Being tired made it hard for my child to   | □                                 | □     | □         | □     | □      |    |
| play or go out with friends as much as     | i                                 | ..    |           |       |        |    |
| he/she would like.                         | →                                 | □     | □         | □     | □      |    |
| P1 272 1940                                | My child felt weak                | →     | □         | □     | □      | □  |
| F19993                                     | My child got tired easily.        |       |           |       |        |    |
| Being tired made it hard for my child to   | □                                 | □     | □         | □     | □      |    |
| PORT                                       | keep up with schoolwork.......... |       |           |       |        |    |
| My child had trouble finishing things      | □                                 | □     | □         | □     | □      |    |
| because he/she was too tired .             | 0                                 |       |           |       |        |    |
| My child had trouble starting things       | →                                 | □     | □         | □     | →      |    |
| because he/she was too tired .             |                                   |       |           |       |        |    |
| My child was so tired it was hard for      | →                                 | -     | →         | □     | □      |    |
| him/her to pay attention                   |                                   |       |           |       |        |    |
| My child was too tired to do sports or     | →                                 | →     | □         | →     | →      |    |
| exercise .                                 |                                   |       |           |       |        |    |
| My child was too tired to do things        | □                                 | →     | □         | □     | □      |    |
| outside                                    |                                   |       |           |       |        |    |
| My child was too tired to enjoy the things | →                                 | □     | □         | □     | □      |    |
| he/she likes to do .                       |                                   |       |           |       |        |    |  
PROM IS Parent Proxy Item Bank v1.0 - Pain Interference 8
16.3.3 parallel parent proxy promis
pain interference - short form

Please respond to each question or statement by marking one box per row.  
| A Imost                                    | AImost                                     |       |           |       |        |    |
|--------------------------------------------|--------------------------------------------|-------|-----------|-------|--------|----|
| In the past 7 days…                        | Never                                      | Never | Sometimes | Often | Always |    |
| My child had trouble sleeping when         | →                                          | □     | □         | □     |        |    |
| →                                          |                                            |       |           |       |        |    |
| PSpains                                    | he/she had pain                            | □     | □         | □     | □      | □  |
| Ptipair7                                   | My child felt angry when he/she had pain . |       |           |       |        |    |
| My child had trouble doing schoolwork      | □                                          | □     | □         | □     | □      |    |
| Ptipair2                                   | when he/she had pain .                     |       |           |       |        |    |
| It was hard for my child to pay attention  | □                                          | □     | □         | □     | □      |    |
| PCpan2                                     | when he/she had pain .                     |       |           |       |        |    |
| It was hard for my child to run when       | □                                          | □     | □         | □     | □      |    |
| Priyard                                    | he/she had pain                            |       |           |       |        |    |
| It was hard for my child to walk one block | 🙂                                         | →     | →         | □     | □      |    |
| Hopera                                     | when he/she had pain .                     |       |           |       |        |    |
| It was hard for my child to have fun when  | □                                          | □     | □         | □     |        |    |
| □                                          |                                            |       |           |       |        |    |
| Pripara                                    | he/she had pain                            |       |           |       |        |    |
| It was hard for my child to stay standing  | →                                          | □     | □         | □     | →      |    |
| when he/she had pain .                     |                                            |       |           |       |        |    |  
PROMIS Parent Proxy Item Bank v1.0 - Peer Relationships 7
16.3.3 parallel parent proxy promis
peer relationships - short form

Please respond to each question or statement by marking one box per row.  
| A Imost                                      | AImost                                       |       |           |       |        |    |
|----------------------------------------------|----------------------------------------------|-------|-----------|-------|--------|----|
| In the past 7 days…                          | Never                                        | Never | Sometimes | Often | Always |    |
| My child felt accepted by other kids         | →                                            | →     | □         | □     | →      |    |
| PY21xxxxi                                    | his/her age                                  |       |           |       |        |    |
| My child was able to count on his/her        | □                                            | □     | □         | □     | →      |    |
| friends                                      | □                                            | □     | □         | □     | →      |    |
| My child was good at making friends ........ |                                              |       |           |       |        |    |
| ITINING                                      | My child and his/her friends helped each     | □     | □         | □     | □      | □  |
| other out.                                   | □                                            | □     | →         | □     | □      |    |
| ritimes                                      | Other kids wanted to be my child's friend.   | □     | □         | □     | →      | →  |
| Other kids wanted to be with my child .....  |                                              |       |           |       |        |    |
| PONING                                       | □                                            | →     | →         | □     | □      |    |
| Plucition                                    | Other kids wanted to talk to my child ...... |       |           |       |        |    |  
Abbreviated Title:  Ph II SGII10 in Peds & Adults
version date 07/22/2019 16.3.4 adult
peer relationships - short form

PROMIS Item Bank v1.0 -Physical Function - Short Form 10a Physical Function - Short Form 10a Please respond to each item by marking one box per row.  
| Not at all                                       | Very little                                         | Somewhat:  Quite a lot    Cannot do   |           |           |    |    |
|--------------------------------------------------|-----------------------------------------------------|---------------------------------------|-----------|-----------|----|----|
| Does your health now limit you in doing vigorous | □                                                   | □                                     | □         | □         | □  |    |
| PA01                                             | activities, such as running, lifting heavy objects, |                                       |           |           |    |    |
| participating in strenuous sports? .             |                                                     |                                       |           |           |    |    |
| Does your health now limit you in walking more   | □                                                   | →                                     | □         | →         | 口 |    |
| PC30                                             | than a mile?                                        |                                       |           |           |    |    |
| Does your health now limit you in climbing one   | →                                                   | →                                     | →         | →         | -  |    |
| flight of stairs?.                               |                                                     |                                       |           |           |    |    |
| Does your health now limit you in lifting or     | □                                                   | □                                     | □         | →         | □  |    |
| PPACE                                            | carrying groceries?                                 |                                       |           |           |    |    |
| Does your health now limit you in bending,       | □                                                   | □                                     | □         | □         | □  |    |
| FA03                                             | kneeling, or stooping?                              | 3                                     | 2         |           |    |    |
| Without                                          | With a                                              | With                                  | With      | Unable to |    |    |
| any                                              | little                                              | some                                  | much      |           |    |    |
| difficult                                        | ifficult                                            | ifficult                              | lifficult | our       |    |    |
| □                                                | →                                                   | □                                     | □         | 口        |    |    |
| PA11                                             | Are you able to do chores such as vacuuming or      |                                       |           |           |    |    |
| yard work?                                       | □                                                   | □                                     | □         | □         | □  |    |
| PA10                                             | Are you able to dress yourself, including tying     |                                       |           |           |    |    |
| shoelaces and doing buttons?                     | .5                                                  | +                                     | 3         | l         |    |    |
| □                                                | □                                                   | □                                     | □         | □         |    |    |
| PPB26                                            | Are you able to shampoo your hair?                  | □                                     | →         | □         | □  | □  |
| PASS                                             | Are you able to wash and dry your body?             | □                                     | □         | □         | □  | □  |
| FC45                                             | Are you able to get on and off the toilet?          |                                       |           |           |    |    |  
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group PROMIS Item Bank v.1.0 - Emotional Distress - Anxiety- Short Form 7a
version date 07/22/2019 16.3.4 adult
emotional distress - anxiety -

Please respond to each item by marking one box per row.  
| In the past 7 days…                  | Never                  | Rarely   | Sometime   | Often   | Always   |    |
|--------------------------------------|------------------------|----------|------------|---------|----------|----|
| □                                    | □                      | □        | □          | □       |          |    |
| I felt fearful                       |                        |          |            |         |          |    |
| EDN001                               | i                      | 2        | 3          | 4       | s        |    |
| □                                    | □                      | □        | □          | □       |          |    |
| EDAN005                              | I felt anxious .       | l        | 2          | 3       | 4        | s  |
| □                                    | □                      | □        | □          | □       |          |    |
| I felt worried                       |                        |          |            |         |          |    |
| ENTIL                                | i                      | 2        | 3          | 4       | s        |    |
| I found it hard to focus on anything | □                      | □        | →          | □       | □        |    |
| EDNN                                 | other than my anxiety. | i        | 2          | 4       | s        |    |
| □                                    | □                      | →        | □          | →       |          |    |
| EDANK45                              | I felt nervous         | !        | 2          | 4       | S        |    |
| □                                    | □                      | □        | □          | o       |          |    |
| EDANGS                               | I felt uneasy          | l        | 2          | 3       | 4        | s  |
| □                                    | □                      | →        | □          | 😂      |          |    |
| EDNN054                              | I felt tense .         | l        | 2          | 3       | 4        |    |  
PROMIS Item Bank v. 1.0 - Emotional Distress - Depression - Short Form 8b Emotional Distress - Depression - Short Form 8b Please respond to each item by marking one box per row.  
| In the past 7 days….                      | Never            | Rarely   | Sometimes   | Often   | Always   |    |
|-------------------------------------------|------------------|----------|-------------|---------|----------|----|
| □                                         | □                | □        | □           | □       |          |    |
| EDOEPU                                    | I felt worthless | l        | 2           | 3       | 4        | s  |
| I felt that I had nothing to look forward |                  |          |             |         |          |    |
| EDOGR                                     | □                | □        | □           | □       | 口       |    |
| to .                                      | l                | 2        | 3           | 4       | S        |    |
| □                                         |                  | □        | □           | □       |          |    |
| EDO                                       | I felt helpless  | i        | 4           |         |          |    |
| - □                                       | :                | - □      | ÷ □         | □       |          |    |
| EDOEP1                                    | I felt sad .     | - □      | '           | →       | - □      | □  |
| I felt like a failure.                    |                  |          |             |         |          |    |
| EDOGRAP                                   | □                | □        | □           | □       | □        |    |
| I felt depressed……………………….                | 4                |          |             |         |          |    |
| l                                         | 2                |          |             |         |          |    |
| →                                         | □                | □        | →           | □       |          |    |
| I felt unhappy .                          | i                | 2        | 3           | 4       |          |    |
| □                                         | □                | →        | →           | □       |          |    |
| EDOGRA                                    | I felt hopeless  | i        |             |         |          |    |  
PROMIS Item Bank v. 1.0 - Fatigue -Short Form 7a Fatigue - Short Form 7a Please respond to each question by marking one box per row.  
In the past 7 days…  
| Never                                   | Rarely                         | Sometimes   | Often   | Always   |    |
|-----------------------------------------|--------------------------------|-------------|---------|----------|----|
| -                                       | o                              | -           | s       | s        |    |
| PATEDP21                                | How often did you feel tired?. |             |         |          |    |
| How often did you experience extreme    | -                              | o           | O       | o        | 😂 |
| PATEDI                                  | exhaustion?.                   |             |         |          |    |
| How often did you run out of            | -                              | o           |         | -        |    |
| FATEXP 11                               | energy?.                       |             |         |          |    |
| How often did your fatigue limit you at | -                              | →           | s       | ß        | 😂 |
| FATINP3                                 | work (include work at home)?   | o           | ß       | o        |    |
| How often were you too tired to think   | -                              | o           |         |          |    |
| CATING                                  | clearly?                       |             |         |          |    |
| How often were you too tired to take a  | -                              | · □         |         | o        | o  |
| P                                       | bath or shower?.               |             |         |          |    |
| How often did you have enough energy    |                                | ←           |         | o        | p  |
| VATINE                                  | to exercise strenuously?       |             |         |          |    |  
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group PROMIS Item Bank v1.0 - Pain Interference - Short Form 6b Pain Interference - Short Form 6b Please respond to each item by marking one box per row.  
In the past 7 days…  
| Not at all                                   | A little bit                                   | Somewhat   | Quite a bit   | Very much   |        |    |
|----------------------------------------------|------------------------------------------------|------------|---------------|-------------|--------|----|
| PANNS                                        | How much did pain interfere with your          | □          | →             | □           | □      | □  |
| enjoyment of life?                           | i                                              | 2          | 3             | s           |        |    |
| PARING                                       | How much did pain interfere with your ability  | □          | □             | □           | □      | □  |
| to concentrate?.                             | 2                                              |            |               |             |        |    |
| i                                            | 3                                              |            |               |             |        |    |
| How much did pain interfere with your day to | □                                              | -          | □             | □           | □      |    |
| day activities?.                             |                                                |            |               |             |        |    |
| How much did pain interfere with your        | □                                              | □          | □             | □           | □      |    |
| enjoyment of recreational activities?.       | 1                                              | 2          | 4             |             |        |    |
| How much did pain interfere with doing your  | □                                              | □          | □             | □           | □      |    |
| PANNI                                        | tasks away from home (e.g., getting groceries, |            |               |             |        |    |
| running errands)?.                           | i                                              | 2          | 3             | 4           | s      |    |
| In the past 7 days…                          | Never                                          | Rarely     | Sometimes     | Often       | Always |    |
| How often did pain keep you from socializing | □                                              | □          | □             | □           | □      |    |
| with others?                                 | i                                              | 2          | 3             | S           |        |    |  
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group Page 1 of 1 PROMIS v.1.0/1.1 - Global
version date 07/22/2019 16.3.4 adult
global health scale please respond

| Very                                             |                                                       |        |            |          |            |    |
|--------------------------------------------------|-------------------------------------------------------|--------|------------|----------|------------|----|
| Excellent                                        | Good                                                  | Fair   | Poor       |          |            |    |
| good                                             |                                                       |        |            |          |            |    |
| □                                                | □                                                     | □      | →          | -        |            |    |
| Clocket                                          | In general, would you say your health is: ..........  | s      | +          | 3        | 2          | i  |
| In general, would you say your quality of        | →                                                     | □      | □          | →        | □          |    |
| Cloted                                           | life is:                                              | +      |            |          |            |    |
| In general, how would you rate your physical     | →                                                     | □      | □          | □        | □          |    |
| Clote                                            | h? .                                                  | 4      | 2          |          |            |    |
| In general, how would you rate your mental       | □                                                     | □      | □          | □        | □          |    |
| health, including your mood and your ability to  | 4                                                     | 1.2    |            |          |            |    |
| think?                                           |                                                       |        |            |          |            |    |
| In general, how would you rate your satisfaction | □                                                     | □      | □          | □        | -          |    |
| Gool                                             | with your social activities and relationships? ...... | 4      | 2          |          |            |    |
| In general, please rate how well you carry out   |                                                       |        |            |          |            |    |
| your usual social activities and roles. (This    | →                                                     | □      | □          | →        | □          |    |
| includes activities at home, at work and in your | 4                                                     |        |            |          |            |    |
| community, and responsibilities as a parent,     |                                                       |        |            |          |            |    |
| child, spouse, employee, friend, etc.)           | Completely                                            | Mostly | Moderately | A little | Not at all |    |
| To what extent are you able to carry out your    |                                                       |        |            |          |            |    |
| everyday physical activities such as walking,    | □                                                     | →      | □          | →        | □          |    |
| Content                                          | climbing stairs, carrying groceries, or moving a      | 2      |            |          |            |    |
| chair?                                           |                                                       |        |            |          |            |    |  
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group Page 1 of 2 PROMIS v.1.0/1.1 - Global  
In the past 7 days…  
  
16.3.5 Adult Patient PROMIS Instruments Spanish (6)
PROMIS Item Bank v. 1.2 - Physical Function - Short Form 10a Capacidad de funcionamiento fisico - Cuestionario abreviado 10a Responda a cada pregunta marcando una casilla por linea.  
| No puedo                                          |                                                   |             |          |          |    |    |
|---------------------------------------------------|---------------------------------------------------|-------------|----------|----------|----|----|
| Nada                                              | Ago                                               | Muche       |          |          |    |    |
| Poco                                              | hacerlo                                           |             |          |          |    |    |
| ¿Limita su salud en este momento su capacidad     | n                                                 | 0           | 0        | o        | -  |    |
| PFA1                                              | para realizar actividades vigorosas, como correr, | s           | 4        | 3        | 2  | i  |
| levantar objetos pesados o participar en deportes |                                                   |             |          |          |    |    |
| energicos?                                        |                                                   |             |          |          |    |    |
| ¿Limita su salud en este momento su capacidad     | →                                                 | -           | →        | -        | →  |    |
| PFC30r1                                           | para caminar mas de una milla (1.6 km)? ........  | s           |          |          |    |    |
| ¿Limita su salud en este momento su capacidad     | 口                                                | 口          | 0        | -        | □  |    |
| PC37                                              | para subir un piso de escaleras? .                | 5           | 4        | 3        | 2  | l  |
| ; Limita su salud en este momento su capacidad    | o                                                 | →           | →        | D        | □  |    |
| PFAS                                              | para levantar o llevar las bolsas del             | s           | 4        | 3        | 2  | i  |
| supermercado?.                                    |                                                   |             |          |          |    |    |
| ¿Limita su salud en este momento su capacidad     | □                                                 |             | 0        | -        | □  |    |
| PFA3                                              | para inclinarse, arrodillarse o agacharse?        | s           | 4        | 3        |    |    |
| Con                                               | Con                                               |             |          |          |    |    |
| Sin                                               | Con poca                                          | alguna      | mucha    | No puedo |    |    |
| dificulta                                         | dificultad                                        | i fi cultat | ificulta | hacerlo  |    |    |
| PFA11                                             | ¿Puede realizar tareas, como pasar la aspiradora  | o           | 0        | 0        | 口 | □  |
| s                                                 | 3                                                 |             |          |          |    |    |
| o trabajar en el jardin? .                        | 4                                                 | 2           | i        |          |    |    |
| ¿Puede vestirse sin ayuda, incluso amarrarse los  | -                                                 | n           | n        | -        | -  |    |
| PFA16r1                                           | s                                                 | 4           | 3        | 2        | i  |    |
| zapatos y abotonarse la ropa?.                    | □                                                 | □           | □        | □        | -  |    |
| PF825                                             | ¿Puede lavarse el cabello con champu?             | S           | 4        | 3        | 2  | 1  |
| □                                                 | n                                                 | n           | -        | -        |    |    |
| PFASS                                             | ¿Puede lavarse y secarse el cuerpo?               | s           | 4        | 3        | 2  | 1  |
| ¿Puede sentarse y levantarse del inodoro          | -                                                 | □           | □        | -        | 😂 |    |
| PFC45r1                                           | (xcusado)? .                                      | s           | 4        | 3        | 2  |    |  
Spanish (Universal)
21 January 2014.  
© 2008-2013 PROMIS Health Organization and PROMIS Cooperative Group PROMIS Item Bank v. 1.0– Emotional Distress - Anxiety - Short Form 7a Trastorno emocional - Ansiedad - Cuestionario abreviado 7a Responda a cada enunciado marcando una casilla por linea.  
|  En los últimos  7 dias...           | Algunas                                   |         |    |    |    |
|--------------------------------------|-------------------------------------------|---------|----|----|----|
| Nunca                                | Rara rez                                  | Siempre |    |    |    |
| reces                                | A menudo                                  |         |    |    |    |
| p                                    | o                                         | "       | $  | ,  |    |
| Senti medo.                          | n                                         |         |    |    | 😂 |
| ears                                 | Senti ansedad.                            | I       | s  |    |    |
| s                                    | o                                         | ,       | -  | :  |    |
| EDANCE                               | Me senti preocupado/a ....                | l       | 2  |    |    |
| Tuve dificultad para concentrarme en | -                                         | ,       |    |    |    |
| :                                    |                                           |         |    |    |    |
| toa                                  | otra cosa que no fiera mi ansiedad ...... | □       | ,  | ,  | .  |
| Me senti nervioso/a..                |                                           |         |    |    |    |
| LOANX.4                              | 1                                         |         |    |    |    |
| o                                    | s                                         | ,       | $  |    |    |
| Me senti intranquilo/a ….            |                                           |         |    |    |    |
| EDANTS                               | i                                         |         |    |    |    |
| D                                    | n                                         |         | :  |    |    |
| EDANISH                              | Me senti tenso/a...                       | l       |    |    |    |  
Spanish (Universal)
24 April 2012
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group Page 1 of 1 PROMIS Item Bank v. 1.0 - Emotional Distress - Depression - Short Form 8b Trastorno emocional - Depresión - Cuestionario abreviado 8b Responda a cada enunciado marcando una casilla por linea.  
| En los últimos 7 dias…             | Algunas   |       |          |         |    |
|------------------------------------|-----------|-------|----------|---------|----|
| Nunca                              | Rara vez  | reces | A menudo | Siempre |    |
| D                                  | □         | □     | □        | □       |    |
| Senti que no valia nada            | l         | 2     | 3        | 4       | s  |
| □                                  | □         | -     | -        | n       |    |
| Senti que nada me ilusionaba       | i         | 2     | 3        | 4       | s  |
| Me senti indefenso/a (que no podia | □         | □     | □        | □       | □. |
| hacer nada para ayudarme)          | I         | 2     | 3        |         |    |
| □.                                 | □         | □     | □        | O       |    |
| Mn triste                          | l         | 2     | 3        | 4       | s  |
| -                                  | ,         | ,     | .        | ;       |    |
| Me senti fracasado/a .........     | □         | □     | □        | □       | □  |
| Me senti deprimido/a .             | 2         | 3     |          |         |    |
| D                                  | p         | o     | □        |         |    |
| Me senti descontento/a………          | l         | 2     | 3        | 4       |    |
| 口                                 | 口        | -     | -        | ,       |    |
| Me senti desesperanzado/a          | i         | 2     | 3        | 4       |    |  
Spanish (Universal)
27 April 2012
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group PROMIS Item Bank v. 1.0 - Fatigue - Short Form 7a Agotamiento - Cuestionario abreviado 7a Responda a cada pregunta marcando una casilla por linea.  
| En los últimos 7 dias…                      | Algunas                                         |       |          |         |    |
|---------------------------------------------|-------------------------------------------------|-------|----------|---------|----|
| Nunca                                       | Rara vez                                        | reces | A menudo | Siempre |    |
| p                                           | o                                               | I     | $        | ,       |    |
| FATEXP20                                    | ¿Con qué frecuencia se sintió cansado/a? ....   |       |          |         |    |
| ¿Con qué frecuencia sintió extenuación      | n                                               | s     | I        | $       | g  |
| FATEXPS                                     | extrema? .                                      | →     | $        |         |    |
| n                                           | g                                               | ,     |          |         |    |
| ¿Con qué frecuencia se quedó sin energia?.. |                                                 |       |          |         |    |
| FATEXP18                                    | ¿Con qué frecuencia se vio limitado/a en el     |       |          |         |    |
| trabajo debido al agotamiento (incluya el   | O                                               | n     | ,        | $       | n  |
| FATIMP                                      | trabajo en el hogar)?                           |       |          |         |    |
| ¿Con qué frecuencia sintió demasiado        | n                                               | g     | I        | $       | o  |
| cansancio como para pensar con claridad? .. |                                                 |       |          |         |    |
| FATIMP3                                     | ¿Con qué frecuencia sintió demasiado            |       |          |         |    |
| cansancio como para darse un baño o una     | D                                               | n     |          | $       | ,  |
| FATIMP2                                     | ducha? .                                        |       |          |         |    |
| ¿Con qué frecuencia tuvo suficiente energia | O                                               | s     | D        | p       | O  |
| FATIMPA                                     | como para hacer ejercicio vigoroso? ........... |       |          |         |    |  
Spanish (Universal)
16 Angust 2012
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group Page 1 of 1 PROMIS Item Bank v.10 - Pain Interference - Short Form 6b Efectos del dolor - Cuestionario abreviado 6b Responda a cada pregunta marcando una casilla por linea.  
En los últimos 7 dias…  
| En los últimos 7 dias…                              | Nada                                           | Un poco   | Mucho    | Muchisimo   |    |    |
|-----------------------------------------------------|------------------------------------------------|-----------|----------|-------------|----|----|
| Algo                                                |                                                |           |          |             |    |    |
| PAININ3                                             | ¿En qué medida el dolor interfirió en su       | □         | o        | o           | □  | o  |
| capacidad para disfrutar de la vida?                | 1                                              | 2         | 3        | 4           | 5  |    |
| PAININS                                             | ¿En qué medida el dolor interfirió en su       | n         | n        | □           | □  | □  |
| capacidad para concentrarse?                        | 1                                              | 2         | 3        | 4           | s  |    |
| ¿En qué medida el dolor interfirió en sus           |                                                |           |          |             |    |    |
| PAINING                                             | -                                              | 😂        | □        | □           | □  |    |
| actividades diarias? .                              | 2                                              | 4         |          |             |    |    |
| ¿En qué medida el dolor interfirió en su            | □                                              | □         | □        | □           | □  |    |
| PAININ10                                            | capacidad para disfrutar de actividades        | 2         | 3        | 4           |    |    |
| recreativas o de ocio?                              |                                                |           |          |             |    |    |
| ¿En qué medida el dolor interfirió en su            |                                                | n         | "        | D           | .. |    |
| PAININ14                                            | capacidad para realizar tareas fuera del hogar | 4         | 5        |             |    |    |
| (p. ej., hacer la compra o los mandados)? ......... |                                                |           |          |             |    |    |
| En los últimos 7 dias…                              | Aganas                                         |           |          |             |    |    |
| Nunca                                               | Rara vez                                       | vece      | A menudo | Siempre     |    |    |
| ¿Con qué frecuencia el dolor le impidió             | n                                              | o         |          | □           |    |    |
| PAININ26                                            | socializar con otras personas? ..........      | l         | 4        |             |    |    |  
Spanish (Universal)
12 September 2012
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group Page 1 of 1 PROMIS Item Bank v.1.0/1.1 - Global
version date 07/22/2019 16.3.4 adult
salud general

Responda a cada enunciado marcando una casilla por linea.  
| Muy                                                        |           |         |          |           |    |
|------------------------------------------------------------|-----------|---------|----------|-----------|----|
| Excelente                                                  | Bena      | Pasable | Mala     |           |    |
| onen                                                       |           |         |          |           |    |
| .                                                          | □         | □       | □        | 😀        |    |
| En general, diria que su salud es .......                  | 4         | 3       | 2        | i         |    |
| □                                                          | □         | □       | n        | 口        |    |
| En general, diria que su calidad de vida es .............. | s         | 4       | 3        | 2         | 1  |
| D                                                          | □         | □       | □        | n         |    |
| En general, ¿cómo calificaria su salud fisica? ……..        | s         | +       | 3        | 2         | l  |
| En general, ¿cómo calificaria su salud mental,             |           | -       | -        | □         |    |
| incluidos su estado de animo y su capacidad para           | -         | 4       |          |           |    |
| pensar?                                                    | 3         | 2       | i        |           |    |
| En general, ¿cómo calificaría su satisfacción con          |           |         |          |           |    |
| sus actividades sociales y sus relaciones con              | n         | -       | →        | □         | -  |
| otras personas? ...........                                | s         | 4       | 3        | 2         | l  |
| ..                                                         |           |         |          |           |    |
| En general, califique en qué medida puede                  |           |         |          |           |    |
| realizar sus actividades sociales y funciones              |           |         |          |           |    |
| habituales. (Esto comprende las actividades en             | 口        | □       |          |           |    |
| n                                                          | n         | □       |          |           |    |
| casa, en el trabajo y en el área donde reside, asi         | s         | 4       | 3        | 2         | 1  |
| como sus responsabilidades como padre o madre,             |           |         |          |           |    |
| hijo/a, cónyuge, empleado/a, amigo/a, etc.).........       | Completa- | En sa   | Moderada |           |    |
| mente                                                      | myoria    | mente   | Un poco  | Para nada |    |
| ¿En qué medida puede realizar sus actividades              | -         | □       | □        | □         | →  |
| fisicas diarias, como caminar, subir escaleras,            | s         | 4       | 3        | 2         | i  |
| cargar las compras o mover una silla?                      |           |         |          |           |    |
| Spanish (Universal)
15 Feb 2012                                                            |           |         |          |           |    |  
© 2008-2012 PROMIS Health Organization and PROMIS Cooperative Group Page 1 of 2
version date 07/22/2019 16.3.4 adult
16.4 a ppendix iv t

| DISTRESS RATING TOOL   |       |
|------------------------|-------|
| Patient                |       |
| DOB:                   | DATE: |  
NAME:
INSTRUCTIONS: We know that all people can get sad and stressed out from time to time.  
Sometimes people can get overwhelmed and distressed by managing all the aspects of their own life along with their illness. When we say distress, we are referring to a range of feelings that can include sadness, being anxious, fearful, worried, or upset. These feelings may affect how you feel physically and remotionally. On the thermometer below, circle the number that best describes how much distress YOU have been feeling IN THE PAST MONTH with a "O" indicating no distress at all and a "10" indicating the most distress you could possibly feel. Then, after indicating the level of distress on the  
  
DISTRESS RATING TOOL
Caregiver NAME:
DATE:
version date 07/22/2019 16.3.4 adult
relationship to child

INSTRUCTIONS: We know that people with a medical illness can get sad and stressed out from time to time. Sometimes people can get overwhelmed and distressed by managing all the aspects of their own life along with their illness. When we say distress, we are referring to a range of feelings that can include sadness, being anxious, fearful, worried, or upset. These feelings may affect how you feel physically and emotionally.  
On the thermometer below, circle the number that best describes how much distress YOUR child has been feeling IN THE PAST MONTH with a "O" indicating no distress at all and a "10"
version date 07/22/2019 16.3.4 adult
17 references

1. Boikos SA, Pappo AS, Killian JK, et al. Molecular Subtypes of KIT/PDGFRA WildType Gastrointestinal Stromal Tumors: A Report From the National Institutes of Health Gastrointestinal Stromal Tumor Clinic. JAMA Oncol 2016. 2. Kelly L, Bryan K, Kim SY, et al. Post-transcriptional dysregulation by miRNAs is implicated in the pathogenesis of gastrointestinal stromal tumor [GIST]. PLoS One 2013;8:e64102. 3. Favier J, Briere JJ, Strompf L, et al. Hereditary paraganglioma/phe ochromocytoma and inherited succinate dehydrogenase deficiency. Horm Res 2005;63:171-9. 4. Wei MH, Toure O, Glenn GM, et al. Novel mutations in FH and expansion of the spectrum of phenotypes expressed in families with hereditary leiomyomatosis and renal cell cancer. J Med Genet 2006;43:18-27. 5. Schmidt LS, Linehan WM. Hereditary leiomyomatosis and renal cell carcinoma. Int J Nephrol Renovasc Dis 2014;7:253-60. 6. Waterfall JJ, Killian JK, Meltzer PS. The role of mutation of metabolism-related genes in genomic hypermethylation. Biochem Biophys Res Commun 2014;455:16-23. 7. Letouze E, Martinelli C, Loriot C, et al. SDH mutations establish a hypermethylator phenotype in paraganglioma. Cancer Cell 2013;23:739-52. 8. Xiao M, Yang H, Xu W, et al. Inhibition of alpha-KG-dependent histone and DNA demethylases by fumarate and succinate that are accumulated in mutations of FH and SDH tumor suppressors. Genes Dev 2012;26:1326-38. 9. Reichardt P, Joensuu H, Blay JY. New fronts in the adjuvant treatment of GIST. Cancer Chemother Pharmacol 2013;72:715-23. 10. Janeway KA, Kim SY, Lodish M, et al. Defects in succinate dehydrogenase in gastrointestinal stromal tumors lacking KIT and PDGFRA mutations. Proc Natl Acad Sci U S A 2011;108:314-8. 11. Astuti D, Latif F, Dallol A, et al. Gene mutations in the succinate dehydrogenase subunit SDHB cause susceptibility to familial pheochromocytoma and to familial paraganglioma. Am J Hum Genet 2001;69:49-54. 12. Martucci VL, Pacak K. Pheochromocytoma and paraganglioma: diagnosis, genetics, management, and treatment. Curr Probl Cancer 2014;38:7-41. 13. Kantorovich V, King KS, Pacak K. SDH-related pheochromocytoma and paraganglioma. Best Pract Res Clin Endocrinol Metab 2010;24:415-24. 14. Schiavi F, Boedeker CC, Bausch B, et al. Predictors and prevalence of paraganglioma syndrome associated with mutations of the SDHC gene. JAMA 2005;294:2057-63. 15. Richter S, Klink B, Nacke B, et al. Epigenetic Mutation of the Succinate Dehydrogenase C Promoter in a Patient With Two Paragangliomas. J Clin Endocrinol Metab 2016;101:359-63. 16. Haller F, Moskalev EA, Faucz FR, et al. Aberrant DNA hypermethylation of SDHC: a novel mechanism of tumor development in Carney triad. Endocr Relat Cancer 2014;21:567-77. 17. Averbuch SD, Steakley CS, Young RC, et al. Malignant pheochromocytoma: effective treatment with a combination of cyclophosphamide, vincristine, and dacarbazine. Ann Intern Med 1988;109:267-73. 18. Tanabe A, Naruse M, Nomura K, Tsuiki M, Tsumagari A, Ichihara A. Combination chemotherapy with cyclophosphamide, vincristine, and dacarbazine in patients with malignant pheochromocytoma and paraganglioma. Horm Cancer 2013;4:103-10. 19. Niemeijer ND, Alblas G, van Hulsteijn LT, Dekkers OM, Corssmit EP. Chemotherapy with cyclophosphamide, vincristine and dacarbazine for malignant paraganglioma and pheochromocytoma: systematic review and meta-analysis. Clin Endocrinol (Oxf) 2014;81:64251. 20. Fishbein L. Pheochromocytoma and Paraganglioma: Genetics, Diagnosis, and Treatment. Hematol Oncol Clin North Am 2016;30:135-50.  
21. Yoshinaga K, Oriuchi N, Wakabayashi H, et al. Effects and safety of (1)(3)(1)Imetaiodobenzylguanidine (MIBG) radiotherapy in malignant neuroendocrine tumors: results from a multicenter observational registry. Endocr J 2014;61:1171-80. 22. Menko FH, Maher ER, Schmidt LS, et al. Hereditary leiomyomatosis and renal cell cancer (HLRCC): renal cancer risk, surveillance and treatment. Fam Cancer 2014;13:637-44. 23. pharmaceuticals A. SGI-110 Investigator Brochure version number 5.0. 2014.
version date 07/22/2019 16.3.4 adult
24. network dtncc. http//www.nccn.org/about/news/newsinfo.asp?newsid=47.

25. Jacobsen PB, Donovan KA, Trask PC, et al. Screening for psychologic distress in ambulatory cancer patients. Cancer 2005;103:1494-502. 26. Ransom S, Jacobsen PB, Booth-Jones M. Validation of the Distress Thermometer with bone marrow transplant patients. Psycho-oncology 2006;15:604-12. 27. Zwahlen D, Hagenbuch N, Carley MI, Recklitis CJ, Buchi S. Screening cancer patients' families with the distress thermometer (DT): a validation study. Psycho-oncology 2008;17:95966. 28. Patel SK, Mullins W, Turk A, Dekel N, Kinjo C, Sato JK. Distress screening, rater agreement, and services in pediatric oncology. Psycho-oncology 2011;20:1324-33. 29. Wiener L ZS, Battles H, Pao M. . Can an Adapted Distress Thermometer in the Pediatric Population be Valid and Clinically Meaningful? Psycho-oncology 2012;21. 30. Cella D, Gershon R, Lai JS, Choi S. The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 2007;16 Suppl 1:133-41. 31. Cella D, Riley W, Stone A, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008. Journal of clinical epidemiology 2010;63:1179-94. 32. Varni JW, Stucky BD, Thissen D, et al. PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. The journal of pain : official journal of the American Pain Society 2010;11:1109-19. 33. Miettinen M, Killian JK, Wang ZF, et al. Immunohistochemical loss of succinate dehydrogenase subunit A (SDHA) in gastrointestinal stromal tumors (GISTs) signals SDHA germline mutation. Am J Surg Pathol 2013;37:234-40. 34. Lai JP, Robbins PF, Raffeld M, et al. NY-ESO-1 expression in synovial sarcoma and other mesenchymal tumors: significance for NY-ESO-1-based targeted therapy and differential diagnosis. Mod Pathol 2012;25:854-8. 35. Saxena N, Maio N, Crooks DR, et al. SDHB-Deficient Cancers: The Role of Mutations That Impair Iron Sulfur Cluster Delivery. J Natl Cancer Inst 2015;108. 36. Aspuria PJ, Lunt SY, Varemo L, et al. Succinate dehydrogenase inhibition leads to epithelial-mesenchymal transition and reprogrammed carbon metabolism. Cancer Metab 2014;2:21. 37. Lombardi G, Corona G, Bellu L, et al. Diagnostic value of plasma and urinary 2hydroxyglutarate to identify patients with isocitrate dehydrogenase-mutated glioma. Oncologist 2015;20:562-7. 38. Liesenfeld DB, Botma A, Habermann N, et al. Aspirin Reduces Plasma Concentrations of the Oncometabolite 2-Hydroxyglutarate: Results of a Randomized, Double-Blind, Crossover Trial. Cancer Epidemiol Biomarkers Prev 2016;25:180-7. 39. Yang AS, Estecio MR, Doshi K, Kondo Y, Tajara EH, Issa JP. A simple method for estimating global DNA methylation using bisulfite PCR of repetitive DNA elements. Nucleic Acids Res 2004;32:e38. 40. Simon R. Optimal two-stage designs for phase II clinical trials. Control Clin Trials 1989;10:1-10.