Late effects care for childhood brain Tumor Survivors: A Quality-Improvement Initiative. (6th May 2022)

• Record Type: Journal Article
• Authors: Cacciotti, Chantel; Fleming, Adam; Duckworth, JoAnn; Tseitlin, Hanna; Anderson, Loretta; Marjerrison, Stacey
• Is Part Of: Pediatric hematology and oncology. Volume 39:Number 4(2022)
• Page Start: 291
• Page End: 303
• Publication Date: 2022-05-06
• Subjects: After care -- brain tumor -- late effects -- long-term follow up -- pediatric neuro-oncology -- pediatric oncology -- survivorship; Pediatric hematology -- Periodicals; Tumors in children -- Periodicals; Blood -- Diseases -- Periodicals; Hematologic Diseases -- Child; Hematologic Diseases -- Infant; Neoplasms -- Child; 618.9215
• DOI: 10.1080/08880018.2021.1987599
• Languages: English
• ISSNs: 0888-0018

Abstract

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.