Quality of Life in Patients Who Have Undergone Previous Treatment for Primitive Neuroectodermal Tumors

Study Overview
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Brief Summary
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RATIONALE: Questionnaires that measure quality of life may improve the ability to plan treatment for patients with primitive neuroectodermal tumors. PURPOSE: This phase III trial is studying quality of life in patients who have undergone previous treatment for primitive neuroectodermal tumors.

Detailed Description
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OBJECTIVES: Primary Determine the quality of survival of patients in the UK and other European countries enrolled in previous International Society of Pediatric Oncology (SIOP) 2 or 3 phase III trials for treatment of pediatric primitive neuroectodermal tumors (PNET). Compare the quality of survival between children allocated to different treatments in these trials. Secondary Determine the framework that will allow similar information to be collected across all participating countries in the PNET 4 trial that opened in autumn 2002. OUTLINE: This is a cross-sectional, multicenter study. Pediatric oncologists, teachers, patients ≥ 12 years old, and parents of children age 3-11 years old complete six questionnaires to assess the patients' motor and sensory function, cognition, behavior, emotion, educational provision and achievement, social integration, and the subjective experience of the patients and their families. PROJECTED ACCRUAL: A total of 229 patients will be accrued for this study.

Official Title
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Study of Outcome of Children Previously Enrolled in European Trials of Treatment for Primitive Neuroectodermal Tumour (PNET)

Conditions
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Brain and Central Nervous System Tumors, Cognitive/Functional Effects, Long-term Effects Secondary to Cancer Therapy in Children, Psychosocial Effects of Cancer and Its Treatment

Intervention / Treatment
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* Procedure: cognitive assessment
* Procedure: psychosocial assessment and care
* Procedure: quality-of-life assessment


Participation Criteria
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Eligibility Criteria
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DISEASE CHARACTERISTICS: Surviving primitive neuroectodermal tumor (PNET) patients previously enrolled in International Pediatric Oncology Society (SIOP) 2 or 3 phase III treatment trials Surviving PNET patients eligible for and treated according to PNET 3 protocol but not randomized No metastatic disease at time of allocation to treatment No current progressive disease PATIENT CHARACTERISTICS: No patient deemed unsuitable for this study by treating clinician PRIOR CONCURRENT THERAPY: Not specified

Ages Eligible for Study
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Minimum Age: 3 Years
Maximum Age: 24 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Intervention/Treatment |
| --- |
|Procedure: cognitive assessment|nan|
|Procedure: psychosocial assessment and care|nan|
|Procedure: quality-of-life assessment|nan|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of life (QOL) as measured by QOL questionnaire |  |  | 

Secondary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Quality of survival compared among children undergoing different treatments by Health Utilities Index |  |  | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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long-term effects secondary to cancer therapy in children, psychosocial effects of cancer and its treatment, cognitive/functional effects, childhood supratentorial primitive neuroectodermal tumor