Childhood Cancer Survivors' Knowledge of Diagnosis,Treatment and Risk of Late Effects: Specialized Survivorship Clinic

Study Overview
=================
Brief Summary
-----------------
This two-part research study will compare childhood cancer survivors receiving specialized follow-up care in the REACH for Survivorship clinic to patients receiving routine follow-up care.

Official Title
-----------------
Childhood Cancer Survivors' Knowledge of Their Diagnosis, Treatment, and Risk of Late Effects: The Impact of Care in a Specialized Survivorship Clinic

Conditions
-----------------
Childhood Cancer

Intervention / Treatment
-----------------
* Other: interview
* Other: clinic visit and interview
* Other: interviews and clinic visit


Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Treatment for primary malignancy per risk-adapted protocol Age ≤ 21 years at time of diagnosis Currently alive without evidence of disease Off therapy for no more than 15 years Exclusion Criteria: -Patients who have received a bone marrow transplant

Ages Eligible for Study
-----------------
Maximum Age: 21 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
No

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Routine Patient Care<br> | Other: interview<br>* Standard Interview (2-15 years from last treatment) Demographic data interview (pre-initial study interview)<br>|
| Previously-enrolled REACH Clinic Patients<br> | Other: clinic visit and interview<br>* REACH Clinic Visit(initial or regular) Post-REACH Clinic Interview (3mos from initial or regular clinic visit) Demographic data interview(pre-initial study interview)<br>|
| New REACH Clinic Patients<br> | Other: interviews and clinic visit<br>* Pre-REACH Clinic Interview(2-15 yrs from last treatment) REACH Clinic Visit(initial or regular) Post-REACH Clinic Interview(1mo from initial clinic visit) Post-REACH Clinic Interview(3mos from initial or regular clinic visit) Demographic data interview(pre-initial study interview)<br>|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Knowledge gained by attending a multispecialty Survivorship Clinic which will be measured by comparison of self report with medical record data in both cross-sectional and longitudinal approach. | In addition to data from patient interviews, a review of medical records will include general patient demographic data as well as data regarding cancer diagnosis, treatment and ongoing follow-up care. | 12 months | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Characterizing how the initial consultation in a specialized clinic impacts childhood cancer survivors' knowledge of their cancer diagnosis, treatment, and risk of late effects by comparing patient's understanding among 3 sampled timepoints. |  | pre-clinic and a post-clinic interviews at 1 and 3 months. | 
| An analysis of differences in relative levels of recommended screening for late effects that childhood cancer survivors have received based on the type of their long-term follow-up care comparing medical records against Survivorship Care Plan. | Scored responses will allow for quantitative analysis of differences within and between the cohorts of patients | 12 months | 
| A qualitative evaluation of program feedback will serve to improve the care provided in the REACH for Survivorship clinic | This data will be evaluated qualitatively for trends. | 12 months |