HRQL and Symptom Assessment for Patients With DIPG or Recurrent and Re-irradiated Brain Tumours and Their Caregivers

Summary

Although many children with brain tumours are successfully cured of their disease, a substantial proportion of patients suffer disease recurrence and require further treatment. This therapy may involve a repeat course of radiation (RT2). Based on retrospective data, re-irradiation may provide palliative and even potentially curative benefit. However, such retrospective data are subject to bias, which may over-report survival and under-report toxicity. Furthermore, we do not know how re-irradiation affects patients' HRQOL. The goal of this research is to prospectively describe the HRQOL of patients diagnosed with DIPG and recurrent brain tumors and their families before and after re-irradiation to more accurately assess the benefit versus the toxicity of this treatment.

In addition, if we are able to demonstrate the feasibility of collecting HRQOL information on a routine basis we will be able to justify the need to conduct this research further and implement HRQOL screening as a standard of care for these patients. Re-irradiation for children with DIPG and recurrent brain tumours will not cure these children from their disease but may improve neurological function and wellbeing. We postulate that the opportunity of more time to say the final good bye and creating memories will facilitate bereavement and prevent psychological dysfunction of parents and siblings. A greater understanding of what helps these families may enable clinicians to better support these children and their families in this difficult disease course. Ultimately our goal is to improve the psychological experience of these patients and their families.

Conditions

• DIPG
• Brain Tumor, Pediatric, Recurrent
• Brain Tumor, DIPG
• Radiation Toxicity
• Radiation Exposure
• Brain Tumor, Pediatric

Interventions

OTHER

This study does not include an intervention.

This study does not include an intervention.

Sponsors & Collaborators

• University of Toronto

  collaborator OTHER

• Université de Montréal

  collaborator OTHER

• University of Ottawa

  collaborator OTHER

• Western University, Canada

  collaborator OTHER

• McMaster University

  collaborator OTHER

• Alberta Children's Hospital

  collaborator OTHER

• Stollery Children's Hospital

  collaborator OTHER

• British Columbia Children's Hospital

  collaborator OTHER

• CancerCare Manitoba

  collaborator OTHER

• Children's Hospital of Eastern Ontario

  collaborator OTHER

• The Hospital for Sick Children

  collaborator OTHER

• McMaster Children's Hospital

  collaborator OTHER

• Children's Hospital Medical Center, Cincinnati

  collaborator OTHER

• St. Justine's Hospital

  collaborator OTHER

• Montreal Children's Hospital of the MUHC

  collaborator OTHER

• IWK Health Centre

  collaborator OTHER

• Janeway Children's Health and Rehabilitation Centre

  collaborator UNKNOWN

• Princess Margaret Hospital, Canada

  collaborator OTHER

• London Health Sciences Centre

  collaborator OTHER

• The Ottawa Hospital

  collaborator OTHER

• CHU de Quebec-Universite Laval

  collaborator OTHER

• University of Calgary

  lead OTHER

Principal Investigators

• Fiona Schulte, PhD · University of Calgary

• Derek Tsang, MD · Princess Margaret Cancer Centre

Eligibility

Min Age

2 Years

Max Age

21 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2020-07-02

Primary Completion

2025-12-31

Completion

2026-03-30

Countries

• Canada

Study Locations