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

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

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.

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.

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