Living with sarcoma in childhood: an indepth qualitative exploration of psychosocial factors

PURPOSE: Sarcomas are cancers of connective tissue and account for approximately 10-15% of all cancer cases in children aged ≤16 years. Treatment often involves chemotherapy, surgery and radiotherapy. The disease and the side-effects of treatments can adversely affect patients and their families' health-related quality of life (HR-QoL). Poorer HR-QoL is reported compared with other cancers; however, these studies are limited to generic cancer QoL measures. This qualitative study explored the psychosocial impact of sarcoma on children affected by sarcoma and their parents. METHODS: Nine children (aged 8-16 years) and 12 parents from three UK Principal Treatment Centres participated in semistructured interviews based on the core domains of HR-QoL. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. RESULTS: Six themes were identified from the analysis, mapping the journey from symptom onset and diagnosis to treatment experience and the lasting effects of living with sarcoma. The themes included: (1) experience of diagnosis; (2) consequences of treatment; (3) impact on family; (4) support systems; (5) disability and inclusion; (6) finding a way forward. CONCLUSION: The study's findings illustrate a marked lack of awareness of sarcoma among patients and their families, leading to pronounced distress for parents following their child's diagnosis and an initial sense of limited peer support. Treatment-related disability was an important issue for children and their families who described the lasting psychological and physical impact on life after surgery for sarcoma.