DEVELOPMENT AND PSYCHOMETRIC EVALUATION OF THE PAINAD

(**P**ain **A**ssessment **in** **A**dvanced **D**ementia) SCALE

## 

## Victoria Warden, R.N.\*, Ann C. Hurley, R.N., D.N.Sc., F.A.A.N.\* \*\* and

## Ladislav Volicer, M.D., Ph.D., F.A.A.N.\* \*\*\*

> \* Geriatric Research Education Clinical Center, Edith Nourse Rogers
> Memorial Veterans Medical Center, Bedford, MA
>
> \*\* The School of Nursing, Bouve College of Health Sciences,
> Northeastern University, Boston, MA

\*\*\* Boston University School of Medicine, Departments of Pharmacology
and Psychiatry, Boston, MA

Corresponding Author: Ms. Victoria Warden

> GRECC (182B)

E.N. Rogers Memorial Veterans Hospital

200 Springs Road

Bedford, MA 01730

telephone (781) 687-2848 fax (781) 687-3527

<Victoria.Warden@med.va.gov>

Alternate correspondent: Ladislav Volicer, MD, PhD

> GRECC (182B)

E.N. Rogers Memorial Veterans Hospital

200 Springs Road

Bedford, MA 01730

telephone (781) 687-2635 fax (781) 687-3515

Key words: Alzheimer's disease, pain, assessment, dementia

Running title: Pain assessment in dementia

DEVELOPMENT AND PSYCHOMETRIC EVALUATION OF THE PAINAD

(**P**ain **A**ssessment **in** **A**dvanced **D**ementia) SCALE

**ABSTRACT**

**OBJECTIVES**: To develop a clinically relevant and easy to use pain
assessment tool for individuals with advanced dementia that has adequate
psychometric properties.

**DESIGN**: Instrument development study using expert clinicians and
behavioral observation methods. Measurement of sensitivity of the
instrument to detect the effects of analgesic medications in a quality
improvement activity.

**SETTING**: Inpatient Dementia Special Care Units in a Veterans
Administration Medical Center.

**PARTICIPANTS**: Nineteen residents with advanced dementia who were
aphasic or lacked the ability to report their degree of pain and six
professional staff members. Additionally, data from medical records of
25 residents who were receiving PRN pain medications were collected.

**MEASUREMENTS**: Based on the literature review, related assessment
tools and consultation with expert clinicians, a five-item observational
tool with a range of 0-10 was developed. The tool, Pain Assessment IN
Advanced Dementia (PAINAD), was compared with the Discomfort Scale and
two Visual Analog Scales (discomfort and pain) by trained raters/expert
clinicians in the development study, and used for detection of analgesic
efficacy in a quality improvement activity.

**RESULTS**: Adequate levels of interrater reliability were achieved
between dyads of the principal investigator with each clinical research
rater and between two raters. PAINAD had satisfactory reliability by
internal consistency with a one factor solution. PAINAD and DS-DAT were
significantly correlated providing evidence of construct validity.
PAINAD detected statistically significant difference between scores
obtained before and after receiving a pain medication.

**CONCLUSIONS**: The PAINAD is a simple, valid, and reliable instrument
for measurement of pain in non-communicative patients. Since the patient
population used for its development and testing was limited to
relatively small number of males, further research is needed before it
can be universally recommended.

### INTRODUCTION

Pain in elderly nursing home residents is a prevalent problem, estimated
to occur in 26-83% of residents ^1-5^. Many residents have several
diagnoses that may be directly related to pain such as degenerative
arthritis and diabetic neuropathy ^6;7^. The cognitively intact elderly
often underreport pain, believing that pain goes along with aging.
Reported pain is often dismissed with statements such as " What do you
expect at your age?" ^8^. Because pain is underreported, pain is
frequently undertreated in the elderly ^9^. This attitude and acceptance
of pain as a consequence of aging may lead to less pain assessment in
general ^8^ and even less treatment of pain in those cognitively
impaired elders who cannot self-report pain ^10^.

The importance of pain detection and treatment was recognized in several
reports and practice guidelines ^11;12^. Untreated pain can cause
secondary symptoms of sleep disturbance, weight loss and depression. In
cognitively impaired individuals, pain can manifest itself as agitation,
increased confusion, and decreased mobility. Untreated pain increases
disability, and decreases quality of life. ^8^

Readily understandable, accurate, and easy for the elderly to use scales
for measuring degree of pain are available ^2^ ^4^ ^8^. However,
identifying and measuring pain in the most cognitively impaired elders
has remained difficult. Most pain scales rely on self-report ^13^ ^14^.
In the early stages of dementia, visual analogue scales have been used
to accurately report levels of pain ^15^. By the mid-stage of dementia,
due to loss in abstract reasoning, the concept of the scales is often
not understood ^15;16^. While all reports of pain even in the
cognitively impaired should be take seriously ^9^, individuals with
advanced dementia are unable to comprehend and therefore unable to use
even the simplest of these scales for pain measurement ^17^. In the most
advanced stage of dementia individuals are non-verbal and unable to
report pain ^18^.

The need for an easy to use, valid and reliable pain assessment tool for
the advanced dementia population has been discussed in the
literature^5;9^. Several research scales exist, for example the
Discomfort Scale for Dementia of the Alzheimer Type (DS-DAT) ^17^, but
these tools require more training time than is realistic for clinicians
in long term care or have cumbersome scoring schema. DS-DAT was adapted
and included in an Assessment of Discomfort in Dementia Protocol ^19^,
but this modified assessment does not provide a quantitative evaluation
of pain severity. A Checklist of Nonverbal Pain Indicators (CNPI) was
developed and showed good interrater reliability ^20^. However, the six
items in this checklist are scored only for presence and absence and
their simple presence may not reflect the actual pain severity. The
score of CNPI is 0 -- 6 and does not compare readily with other scales
measuring pain that express the severity of pain on the scale from 0 --
10. Similarly, proxy pain questionnaire (PPQ) assesses global presence,
frequency and intensity of pain and does not provide a simple overall
score ^21^. For these reasons, we decided to develop a tool for
measuring pain in non-communicative individuals, that would be simple to
administer and had score from 0 -- 10.

**METHODS**

# Design

The Pain Assessment IN Advanced Dementia (PAINAD) scale was developed
after extensive review of the literature and available pain assessment
tools. PAINAD is based on categories and behaviors from the Face, Legs,
Activity, Cry, Consolability Scale (FLACC) ^22^, the DS-DAT ^17^, and
descriptions of pain taken from the literature and cited by experienced
dementia care clinicians.

**Study population**

The projects were carried out on a Dementia Special Care Unit (DSCU)
where 96 in-patients receive care for dementia. The research project was
approved by the hospital\'s Institutional Review Board and consent to
participate was obtained from the surrogate decisionmaker who had the
authority to make a research decision for the veteran. Inclusion
criteria included: (1) diagnosis of dementia written on the medical
record, (2) no planned discharge, (3) inability to report pain or
discomfort to caregivers, and (4) a proxy decision-maker identified in
the medical record.

The principal investigator (VW) presented the study at informal
educational meetings held for staff and separate meetings for families.
Signed informed consent was obtained on behalf of the first 20 veterans
(no refusals) whose family decisionmaker was approached by VW. One
veteran died before data collection and a second died before the third
observation was conducted. Analyses were conducted on data from the 19
participants.

In addition, data were collected from charts of 25 participants of an
ongoing quality improvement project, "Take 5: Pain the 5^th^ Vital
Sign". No quantitative demographic or disease characteristics are
available on those 25 patients. However, patients were included in the
quality improvement project if they had severe dementia, could not
report pain, and received a medication to treat pain symptoms. Analgesic
administration was precipitated by clinical evaluation indicating
presence of pain, and the most commonly used analgesics were
acetaminophen and morphine.

Instruments:

Overall dementia disease severity was determined by scores on scales:
the Mini Mental Status Examination (MMSE) ^23^, alpha in this study =
.92, 2) and Bedford Alzheimer Nursing Severity Subscale (BANS-S) ^24^,
alpha in this study = .80. Each scale was administered to each
participant a week preceding testing the PAINAD. A member of the
research team administered the MMSE and a member of the nursing staff
who had first hand knowledge of the veteran completed the BANS-S scale.
Demographic information was abstracted from the veteran\'s medical
record.

One Visual Analog Scale (VAS) was present on both the DS-DAT and the
PAINAD forms. On the PAINAD form it consisted of a 10-cm line, labeled
"no pain" ( 0 ) on the left and "severe pain" (10 ) on the right. On the
DS-DAT form the 10-cm VAS was labeled "completely comfortable" on the
left and "extremely uncomfortable" on the right. The rater was asked to
mark the point on the line that they felt best indicated the degree of
pain of discomfort the person being observed was experiencing. Raters
completed the VAS at the same time that the PAINAD or DS-DAT was done.

**Procedure**

Initially, three licensed practical nurses and two nursing assistants
assisted in pilot testing by administering an early version of the
PAINAD scale concurrently with VW. Scores were compared and rationales
for scoring each category were discussed. Expert professional nurses
with extensive experience on the DSCUs provided additional input
regarding clarity of items and ease of using the PAINAD. Several areas
of confusion were clarified and definitions were revised accordingly.
For instance, the insertion of "independent of vocalization" into the
*Breathing* item helped to differentiate *Breathing* from *Negative
Vocalization* and low level speech with a negative or disapproving
quality was added to *Negative Vocalization* to encompass a number of
unpleasant or offensive words and speech patterns. The final version of
the PAINAD and accompanying item definitions with behavioral descriptors
was completed (Appendix).

To evaluate the PAINAD\'s psychometric properties, the research team
expanded to include four experienced DSCU professional nurses and a
master\'s level social work intern (KS). VW and KS developed a training
program using archival footage from previous instrument development
projects to measure discomfort ^17^, agitation ^25^, and resistiveness
^26^. VW wrote a two-hour curriculum and oriented raters who memorized
the items and behavioral definitions and scored training tapes until
each rater\'s PAINAD scores agreed with those of VW. Because the DS-DAT
was designed for research and requires extensive training to be used
accurately ^17^ and familiarity with the tool improves inter rater
reliability ^26^, only two of the raters used this scale.

For each observation period during the research project, two raters
simultaneously viewed the participants on the DSCUs for five minutes.
This was done three times, first during rest or time of no activity.
Participants were typically either sitting in a chair or lying in bed.
For this observation, the first rater used the PAINAD and pain-VAS while
VW or SM administered the DS-DAT and discomfort-VAS. A second
observation was made during a presumably pleasant activity, but when
movement could have actually lead to pain. Activities included visiting
with family or friends, watching TV or an old movie, as well as ward
activities such as socials or reminiscence and \"Bright Eyes\" groups
^27^. A third observation was made during caregiving (toileting,
transfers, and bathing or showering) that may be unpleasant for the
patient and lead to refusal to conduct the activity or other negative
emotions. Movement during this activity may also cause pain due to
contractures or underlying conditions such as arthritis. During the
second and third observations two raters simultaneously administered the
PAINAD and pain-VAS.

Data obtained from medical records during the first month Quality
Improvement Project included all residents who routinely received pain
medication on a \"whenever necessary\" (PRN) basis (n = 25). Clinical
staff trained in the use of the PAINAD used the PAINAD as an assessment
tool along with clinical judgement to determine if the resident required
medication. Thirty minutes post medication the PAINAD was administered
the second time.

# Statistical Analysis

Pain was conceptualized as a multifactorial symptom, expressed by
several signs, but forming a single construct. Therefore, Cronbach\'s
alpha was selected as the measure for verifying internal consistency. To
achieve 10 participants per item, both the research and quality
improvement data were combined and examined for internal consistency
^28^. A principal components factor analysis with varimax rotation was
performed to examine score variance.

Construct validity was determined using the contrasted groups and
hypothesis testing methods ^29^. The ANOVA statistic was used to examine
PAINAD scores within participants exposed to three different conditions.
Paired t-test was used to compare PAINAD scores pre and post PRN
medication in the quality improvement project.

**RESULTS**

Research participants had mean age of 78.1 [+]{.underline} 5 (S.D, range
66 - 85) years, suffered from dementia for 8.7 [+]{.underline} 4.7 (1 --
20) years and were institutionalized for 16.5 [+]{.underline} 13.5 (1 --
50) months. They had severe dementia with the MMSE score of 2.8
[+]{.underline} 4.5 (0 -- 16), BANS- S score of 16.4 [+]{.underline} 4.4
(9 -- 23), and were clearly unable to verbally report symptoms of pain.

PAINAD mean scores ([+]{.underline} SD) of the 19 participants who were
observed during three different conditions went from 1.3 [+]{.underline}
1.3 during no stimulation to 1.0 [+]{.underline} 1.3 during pleasant
activity or rest, and to 3.1 [+]{.underline} 1.7 during an unpleasant
event (Table 1) (*F* (1,17) = 10.93, *p* \< .001). PAINAD mean scores
([+]{.underline} SD) of the 25 residents in the quality improvement
project who were assessed to determine PRN pain medication needs and
effectiveness decreased from 6.7 [+]{.underline} 1.8 before PRN
medication to 1.8 [+]{.underline} 2.2 30 minutes after receiving
medication (*t* (24) = 9.6, *p* \< .001).

PAINAD scores were not normally distributed and many scores clustered
around 0, especially during a pleasant condition or 30\" post pain
medication. With the exception of the time 30\" post pain medication,
Cronbach\'s alpha was lower than the desired .70 ^28^ for a new scale.

Factor structure analysis of combined PAINAD data obtained during the
scale development showed one main factor that explained 50.1percent of
variance (eigenvalue 2.51) and a minor factor (breathing alone) that
explained additional 20.6 percent of variance (eigenvalue 1.03).
However, the quality improvement data showed a one-factor solution that
explained 61 percent of variance (eigenvalue 3.05). The quality
improvement project is probably better representation of the actual use
of PAINAD scale in clinical practice.

There were significant correlations among visual analogue scales and
observational scales at rest (Table 2), and between simultaneous ratings
of pain during both presumed pleasant and unpleasant conditions (Table
3). Comparison of z-score transformations of PAINAD and DS-DAT scores by
paired t-tests yielded *t* (18) = 0.0, *p* = 1.0. Comparison of raw
PAINAD scores obtained by two observers during a pleasant condition
yielded *t* (17) = 0.0, *p* = 1.0 and during unpleasant condition *t*
(18) = 1.7, *p* = .11.

**DISCUSSION**

The PAINAD successfully measured pain in individuals with advanced
dementia, who were unable to use any of the available pain assessment
tools that have been used with cognitively impaired individuals. Fifteen
of 19 research participants had MMSE scores under five and the four that
were still able to verbally interact did so on a social level only and
were unreliable in their reporting. While other scales measuring pain
are appropriate for research studies, some such as the DS-DAT require
extensive training that is, in our experience and experience of others
^7^, too time intensive to be used in clinical settings making DS-DAT
too complicated and difficult for routine use.

Results of this study show that PAINAD has good construct validity and
reliability. PAINAD was able to detect differences in pain associated
with different conditions or caused by an analgesic administration, and
DS-DAT and PAINAD produced similar mean z-scores that were positively
correlated. Similar PAINAD scores observed within similar conditions by
two different raters provided evidence for inter-rater agreement in this
project and demonstration that the PAINAD can be used accurately after a
two-hour training session.

Internal consistency of PAINAD is lower than what is desired for a new
scale ^28^. However, the PAINAD has only five items to make one concept
operational, and each item reflects disparate individual symptoms.
However, results of factor analysis showed that despite the diversity of
symptoms (and items) that make pain operational in the PAINAD, there is
one single underlying construct.

During the initial review of the alpha coefficients, the item-total
correlations were examined to identify \"poorly peforming\" items that
could be removed. In all cases, the alpha could be increased with the
deletion of the *Breathing* item or combination of *Breathing* and
*Negative Vocalization*. However, given the fact that many patients with
advanced dementia suffer from intercurrent respiratory diseases and for
approximately 50%, the immediate proximal cause of death is pneumonia
^30^ our team believed that for maintaining content validity,
*Breathing* needed to remain as a separate item in the PAINAD. Changes
in respiration have been noted in the literature when pain occurs,
particularly when acute pain occurs.

As anticipated with a behavioral observation tool that measures only
negative versus a complete range of behaviors, and zero means the
absence of the condition PAINAD scores were not normally distributed.
PAIN scores often were or clustered around 0, especially during a
pleasant condition or 30\" post pain medication.

To obtain a precise PAINAD score, alternative causes of indicators that
are included in the PAINAD scale have to be excluded. These causes
include resistiveness to care leading to negative vocalization or
striking out, negative emotions leading to sad expression or crying, or
anxiety leading to hyperventilation or frightened expression. However,
it also needs to be considered that some of these causes could be
aggravated by pain. The relationship between pain, discomfort and affect
in individuals with advanced dementia needs to be further investigated.

This study has some limitations because the number of participants was
small and included only white, elderly, middle class male veterans. But,
these limitations may also be viewed as suggestions for future research
and additional evidence that the PAINAD is a clinical tool. Since the
majority of persons with advanced dementia are female, the PAINAD needs
to be examined in sites that provide care for a more diverse population
including women and racial/ethnic minorities. Research observations were
limited to three times per patient. Future validation studies should
increase the number of trained raters to allow observation to take place
at all times of the day. Future research needs also to compare utility
of all available instruments for this population. However, the important
point is that clinical staff learned to use the PAINAD with a few hours
of training. Furthermore, the clinical staff liked the PAINAD and
continues to use it in routine clinical care.

**ACKNOWLEDGEMENTS:**

For their dedicated support in data collection and tireless efforts to
improve dementia care, the authors would like to express their gratitude
to the expert clinical staff on the GRECC DSCU at the VAMC in Bedford,
MA, Patricia Lane, BSN, RNC, Sally MacDonald, RN, JoAnn Panke, BSN, RNC,
RD, Patricia Smith, RN, who took part in this study. The authors would
also like to thank Mary Duffy, RN, DNSc, Boston College School of
Nursing who provided methodological assistance and Keiko Sawa, MSW
candidate 2001, Simmons College School of Social Work, Social Work
Intern for her steadfast support and assistance in data collection. We
would also like to acknowledge and thank the veterans and their families
for their participation in this study.

This study was supported by the U.S. Department of Veteran's Affairs and
the Boston University Alzheimer's Disease Center (P30AG13846).

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Table 1

Descriptive data on PAINAD

  --------------- --------------- --------------- --------------- -------- ---------- -------------
  Data Source and                 Descriptive                                         
  Patient                         Data                                                
  Condition                                                                           

  Project/Rater   Observational   Total           Observa-tions   Median   Mean (SD)  Cronbach\'s
                  Condition       Observa-tions   when PAINAD = 0                     alpha
                                  (n)                                                 

  Research        No stimulation  19              7               1        1.3 (1.3)  .57

  Research/ 1     Pleasant or     18              9               0.5      1.0 (1.3)  .59
                  rest                                                                

  Research/ 2     Pleasant or     18              10              0        1.0 (1.3)  .63
                  rest                                                                

  Research/ 1     Unpleasant      19              1               3        3.1 (1.7)  .50

  Research/ 2     Unpleasant      19              1               4        3.5 (2.1)  .67

  Research        All conditions  93              28              2        2.1 (2.0)  .72

  Quality         Pre pain        25              0               7        6.7(1.8)   .30
  Improvement     medication                                                          

  Quality         Post pain       25              10              1        1.7(2.2)   .80
  Improvement     medication                                                          

  Quality         All conditions  50              10              4        4.3 (3.2)  .83
  Improvement                                                                         
  --------------- --------------- --------------- --------------- -------- ---------- -------------

Total of 19 patients was included in the Research study and 25 patients
in the Quality Improvement activity

Table 2.

Associations between simultaneous observations of pain and discomfort at
rest

  ----------------- -------- ------ ----- -------- ------ ----- ---------- ------ -----
                    DS-VAS                PAINAD                PAIN-VAS          

                    r        p      n     r        p      n     r          p      n

  DS-DAT            .81      .001   19    .76      .001   19    .56        .016   18

  DS-VAS                                  .76      .001   19    .85        .001   18

  PAINAD                                                        .75        .001   18
  ----------------- -------- ------ ----- -------- ------ ----- ---------- ------ -----

r = Pearson correlation, p = probability, n = number of participants

Table 3.

Associations between simultaneous observations in different conditions

+-------------+------------------+------+-----+----+----+-----+-----+
|             | Observational    | PAIN |     | PA |    | PA  |     |
|             |                  | -VAS |     | IN |    | IN- |     |
|             | Condition        | (1)  |     | AD |    | VAS |     |
|             |                  |      |     | (  |    | (2) |     |
|             |                  |      |     | 2) |    |     |     |
+-------------+------------------+------+-----+----+----+-----+-----+
|             |                  | r    | n   | r  | n  | r   | n   |
+-------------+------------------+------+-----+----+----+-----+-----+
| PAINAD (1)  | Pleasant         | .92  | 18  | .  | 19 | .89 | 18  |
|             | activity         |      |     | 97 |    |     |     |
+-------------+------------------+------+-----+----+----+-----+-----+
|             | Unpleasant       | .82  | 19  | .  | 19 | .90 | 19  |
|             | activity         |      |     | 82 |    |     |     |
+-------------+------------------+------+-----+----+----+-----+-----+
| PAIN-VAS    | Pleasant         |      |     | .  | 18 | .87 | 18  |
| (1)         | activity         |      |     | 93 |    |     |     |
+-------------+------------------+------+-----+----+----+-----+-----+
|             | Unpleasant       |      |     | .  | 19 | .83 | 19  |
|             | activity         |      |     | 90 |    |     |     |
+-------------+------------------+------+-----+----+----+-----+-----+
| PAINAD (2)  | Pleasant         |      |     |    |    | .95 | 18  |
|             | activity         |      |     |    |    |     |     |
+-------------+------------------+------+-----+----+----+-----+-----+
|             | Unpleasant       |      |     |    |    | .91 | 19  |
|             | activity         |      |     |    |    |     |     |
+-------------+------------------+------+-----+----+----+-----+-----+

r = Pearson correlation, n = number of participants, p = .001 for all
correlations

**APPENDIX**

**Pain Assessment IN Advanced Dementia (PAINAD)**

+-------------+-----------+-----------------+-----------------+-------+
|             | 0         | 1               | 2               | Score |
+-------------+-----------+-----------------+-----------------+-------+
| # Breathing | Normal    | Occasional      | Noisy labored   |       |
|             |           | labored         | breathing.      |       |
| Independent |           | breathing.      |                 |       |
| of          |           |                 | Long period of  |       |
| v           |           | Short period of | hy              |       |
| ocalization |           | h               | perventilation. |       |
|             |           | yperventilation |                 |       |
|             |           |                 | Cheyne-stokes   |       |
|             |           |                 | respirations    |       |
+-------------+-----------+-----------------+-----------------+-------+
| **Negative  | None      | Occasional moan | Repeated        |       |
| Voc         |           | or groan.       | troubled        |       |
| alization** |           |                 | calling out.    |       |
|             |           | Low level       |                 |       |
|             |           | speech with a   | Loud moaning or |       |
|             |           | negative or     | groaning.       |       |
|             |           | disapproving    |                 |       |
|             |           | quality         | Crying          |       |
+-------------+-----------+-----------------+-----------------+-------+
| **Facial    | Smiling,  | Sad.            | Facial          |       |
| e           | or        | Frightened.     | grimacing       |       |
| xpression** | ine       | Frown           |                 |       |
|             | xpressive |                 |                 |       |
+-------------+-----------+-----------------+-----------------+-------+
| **Body      | Relaxed   | Tense.          | Rigid. Fists    |       |
| Language**  |           |                 | clenched, Knees |       |
|             |           | Distressed      | pulled up.      |       |
|             |           | pacing.         |                 |       |
|             |           | Fidgeting       | Pulling or      |       |
|             |           |                 | pushing away.   |       |
|             |           |                 | Striking out    |       |
+-------------+-----------+-----------------+-----------------+-------+
| **Cons      | No need   | Distracted or   | Unable to       |       |
| olability** | to        | reassured by    | console,        |       |
|             | console   | voice or touch  | distract or     |       |
|             |           |                 | reassure        |       |
+-------------+-----------+-----------------+-----------------+-------+
|             |           |                 |                 | TOTAL |
+-------------+-----------+-----------------+-----------------+-------+

**Item definitions**

**Breathing**

1\. [Normal breathing]{.underline} is characterized by effortless,
quiet, rhythmic (smooth) respirations.

2\. [Occasional labored breathing]{.underline} is characterized by
episodic bursts of harsh, difficult or wearing respirations.

3\. [Short period of hyperventilation]{.underline} is characterized by
intervals of rapid, deep breaths lasting a short period of time.

4\. [Noisy labored breathing]{.underline} is characterized by negative
sounding respirations on inspiration or expiration. They may be loud,
gurgling, wheezing. They appear strenuous or wearing.

5\. [Long period of hyperventilation]{.underline} is characterized by an
excessive rate and depth of respirations lasting a considerable time.

6\. [Cheyne-Stokes respirations]{.underline} are characterized by
rhythmic waxing and waning of breathing from very deep to shallow
respirations with periods of apnea (cessation of breathing).

**Negative Vocalization**

1[. None]{.underline} is characterized by speech or vocalization that
has a neutral or pleasant quality.

2\. [Occasional moan or groan]{.underline} is characterized by mournful
or murmuring sounds, wails or laments. Groaning is characterized by
louder than usual inarticulate involuntary sounds, often abruptly
beginning and ending.

3\. [Low level speech with a negative or disapproving
quality]{.underline} is characterized by muttering, mumbling, whining,
grumbling, or swearing in a low volume with a complaining, sarcastic or
caustic tone.

4\. [Repeated troubled calling out]{.underline} is characterized by
phrases or words being used over and over in a tone that suggests
anxiety, uneasiness, or distress.

5\. [Loud moaning or groaning]{.underline} is characterized by mournful
or murmuring sounds, wails or laments in much louder than usual volume.
Loud groaning is characterized by louder than usual inarticulate
involuntary sounds, often abruptly beginning and ending.

6\. [Crying]{.underline} is characterized by an utterance of emotion
accompanied by tears. There may be sobbing or quiet weeping.

**Facial Expression**

1\. [Smiling or inexpressive]{.underline}. Smiling is characterized by
upturned corners of the mouth, brightening of the eyes and a look of
pleasure or contentment. Inexpressive refers to a neutral, at ease,
relaxed, or blank look.

2\. [Sad]{.underline} is characterized by an unhappy, lonesome,
sorrowful, or dejected look. There may be tears in the eyes.

3\. [Frightened]{.underline} is characterized by a look of fear, alarm
or heightened anxiety. Eyes appear wide open.

4\. [Frown]{.underline} is characterized by a downward turn of the
corners of the mouth. Increased facial wrinkling in the forehead and
around the mouth may appear.

5\. [Facial grimacing]{.underline} is characterized by a distorted,
distressed look. The brow is more wrinkled as is the area around the
mouth. Eyes may be squeezed shut.

**Body Language**

1\. [Relaxed]{.underline} is characterized by a calm, restful, mellow
appearance. The person seems to be taking it easy.

2\. [Tense]{.underline} is characterized by a strained, apprehensive or
worried appearance. The jaw may be clenched. (exclude any contractures)

3\. [Distressed pacing]{.underline} is characterized by activity that
seems unsettled. There may be a fearful, worried, or disturbed element
present. The rate may by faster or slower.

4\. [Fidgeting]{.underline} is characterized by restless movement.
Squirming about or wiggling in the chair may occur. The person might be
hitching a chair across the room. Repetitive touching, tugging or
rubbing body parts can also be observed.

5\. [Rigid]{.underline} is characterized by stiffening of the body. The
arms and/or legs are tight and inflexible. The trunk may appear straight
and unyielding. (exclude any contractures)

6\. [Fists clenched]{.underline} is characterized by tightly closed
hands. They may be opened and closed repeatedly or held tightly shut.

7\. [Knees pulled up]{.underline} is characterized by flexing the legs
and drawing the knees up toward the chest. An overall troubled
appearance. (exclude any contractures)

8\. [Pulling or pushing away]{.underline} is characterized by
resistiveness upon approach or to care. The person is trying to escape
by yanking or wrenching him or herself free or shoving you away.

9\. [Striking out]{.underline} is characterized by hitting, kicking,
grabbing, punching, biting, or other form of personal assault.

**Consolability**

1\. [No need to console]{.underline} is characterized by a sense of well
being. The person appears content.

2\. [Distracted or reassured by voice or touch]{.underline} is
characterized by a disruption in the behavior when the person is spoken
to or touched. The behavior stops during the period of interaction with
no indication that the person is at all distressed.

3\. [Unable to console, distract or reassure]{.underline} is
characterized by the inability to sooth the person or stop a behavior
with words or actions. No amount of comforting, verbal or physical, will
alleviate the behavior.