Late effects care for childhood brain Tumor Survivors: A Quality-Improvement Initiative

Abstract

Childhood and adolescent brain tumor survivors are at risk for long-term consequences of therapy. We reviewed adherence to long-term follow-up (LTFU) guidelines, assessed provider perspectives, and studied the needs, experience and quality of life (QOL) of pediatric malignant brain tumor survivors in the McMaster Children’s Hospital Neuro-Oncology clinic. LTFU areas for improvement were evaluated using an anonymous health provider needs assessment questionnaire. The Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), Self-Management Skills Scale (SMSS), and PedsQL measured parents/patients’ needs and QOL. Individual care plans were based on the Children’s Oncology Group (COG) LTFU guidelines. Based on 17 responses, staff perceived areas for improvement included: increased multi-disciplinary participation, improved patient education and increased surveillance for therapy-related late effects. Thirty-two families participated, most felt they received high-quality care. Mean cancer worry scores were low (71.8 (± 28.4)). Survivors reported limited self-management skills (58.5 (±18.2)), requiring support with medical needs and activities of daily living. Overall median QOL scores were ‘good’ (parental report 72.3 (±17.7), survivor 68.2 (±16.6)). Utilizing survivorship guidelines and assessments from patients, caregivers and health providers, we implemented improvements in our provision of neuro-oncology survivorship care. Lessons learned may assist other LTFU programs.

Keywords:

• After care
• brain tumor
• late effects
• long-term follow up
• pediatric neuro-oncology
• pediatric oncology
• survivorship

Acknowledgment

The authors would like to acknowledge the survivors, families and health care providers who took the time to participate in this work.

Disclosure statement

No potential competing interest was reported by the authors.

Consent

All participants (or legal guardians) gave written consent to the inclusion of material pertaining to themselves, and they acknowledge that they cannot be identified via the paper. All participants data has been fully anonymized.

Data availability statement

Due to the nature of this research, participants of this study did not agree for their data to be shared publicly, so supporting data is not available.

Additional information

Funding

No funding was obtained for this project.