Impact of treatment site in adolescents and young adults with central nervous system tumors.

BACKGROUND: Adolescents and young adults (AYAs; aged 15-39 years) have inferior survival in comparison with younger (aged 0-14 years) cancer patients. Impact of care at specialized centers such as National Cancer Institute-designated Comprehensive Cancer Centers (NCICCC) for AYAs of all ages or the Children's Oncology Group (COG) for AYAs aged 15 to 21 years with central nervous system (CNS) tumors remains unstudied. METHODS: We constructed a cohort of 560 children and 784 AYAs with CNS tumors reported to the Los Angeles cancer registry from 1998 to 2008. Cox and logistic regression models were used, with two-sided P values from Wald χ(2) tests. RESULTS: In Cox regression analysis restricted to World Health Organization (WHO) grade II tumors, patients of all ages saw worse outcome if not treated at NCICCC/COG sites (non-NCICCC/COG vs NCICCC/COG: hazard ratio [HR] =1.73; 95% confidence interval [CI] = 1.09 to 2.72). Furthermore, the worse outcome for AYAs compared with children (HR = 1.90; 95% CI = 1.21 to 2.98; P = .005) was abrogated (HR = 1.35; 95% CI = 0.79 to 2.29; P = .27) by care at NCICCC/COGs. Those less likely to receive care at NCICCC/COG sites included young AYAs (aged 15-21 years vs children: odds ratio [OR] = 0.23; 95% CI = 0.11 to 0.48; P < .001) and older AYAs (aged 22-39 years) with low socioeconomic status (OR = 0.39; 95% CI = 0.17 to 0.89; P = .02), public/no insurance (OR = 0.30; 95% CI = 0.12 to 0.71; P < .01), and distance to care greater than 5 miles (OR = 0.29; 95% CI = 0.15 to 0.57; P < .001). CONCLUSIONS: Population-based data reveal that care at NCICCC/COG sites mitigates inferior outcome in AYAs with WHO grade II CNS tumors compared with children. Compared with children, AYAs are less likely to receive care at NCICCC/COGs. Insurance, socioeconomic status, and distance serve as barriers to care at NCICCCs for older AYAs.

"What's the point?" exploring rehabilitation for people with 1° CNS tumours using ethnography: patients' perspectives.

BACKGROUND AND PURPOSE: Primary central nervous system (1° CNS) tumours represent 2% of cancers. They record the third highest mortality from cancer in the 18-35 age group in the UK today. Despite improving medical treatments, prognosis remains poor, with more patients experiencing residual complex functional deficits. Rehabilitation for these patients is scantily researched. Observational studies demonstrate improved function following inpatient and some outpatient multi-professional rehabilitation. Comparative recovery and functional improvement between patients with 1° CNS tumours and differing oncological and other neurological diagnoses is shown. Qualitative papers explore patient's values of medical treatment, demonstrating themes of hope and improved quality of life (QOL). No studies explore the significance of rehabilitation for these patients. The aim of this study was to discover the meaning of rehabilitation for people with this life-limiting illness through ethnographic enquiry. METHODS: Fieldwork data, primarily written narratives, field notes and interviews, were collected from 10 patients with 1° CNS tumours receiving physiotherapy at a UK specialist cancer hospital. They were asked what they thought the purpose of rehabilitation was in the context of their disease. Thematic analysis explored this data. RESULTS: Patient experience provided insightful perception of the beneficial role of rehabilitation in the context of their incurable disease. Main emergent themes included independence, confidence, 'professional talk' (the broader sense of communication through talk, touch and therapeutic handling) and hope. An analogy presents an analytical model of the themes. Incidental findings identified difficulty accessing services. CONCLUSION: Rehabilitation intervention offers positive contributions to patients with 1° CNS tumours improving QOL irrespective of the stage of their disease. With equal access to cancer services, a key aim advocated in national directives in health-care today, it is essential that patients receiving treatment for this life-limiting disease have timely access to rehabilitation services in conjunction with holistic medical management.