Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study.

PURPOSE: Risk-stratified life-long follow-up care is recommended for adult childhood cancer survivors (CCS) to ensure appropriate prevention, screening, and management of late effects. The identification of barriers to long-term follow-up (LTFU), particularly in varying healthcare service contexts, is essential to develop and refine services that are responsive to survivor needs. We aimed to explore CCS and healthcare professionals (HCP) perspectives of healthcare system factors that function as barriers to LTFU in British Columbia, Canada. METHODS: We analyzed data from 43 in-depth interviews, 30 with CCS and 13 with HCP, using qualitative thematic analysis and constant comparative methods. RESULTS: Barriers to accessible, comprehensive, quality LTFU were associated with the following: (1) the difficult and abrupt transition from pediatric to adult health services, (2) inconvenient and under-resourced health services, (3) shifting patient-HCP relationships, (4) family doctor inadequate experience with late effects management, and (5) overdue and insufficient late effects communication with CCS. CONCLUSIONS: Structural, informational, and interpersonal/relational healthcare system factors often prevent CCS from initially accessing LTFU after discharge from pediatric oncology programs as well as adversely affecting engagement in ongoing screening, surveillance, and management of late effects. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the issues faced by adult CCS will provide insight necessary to developing patient-centered healthcare solutions that are key to accessible, acceptable, appropriate, and effective healthcare.

Provincial disparities of growth hormone coverage for young adult survivors of paediatric brain tumours across Canada.

BACKGROUND: Young adult survivors of paediatric brain tumours (PBTs) who have been treated with radiation therapy will likely be severely growth hormone-deficient when retested at the achievement of final height. Growth hormone replacement therapy (GHRT) is administered to treat growth hormone deficiency (GHD). Public drug coverage for GHRT falls under the responsibility of provincial governments across Canada. This study sought to determine the extent of public drug coverage and cost in each Canadian province for GHRT to treat GHD during adulthood for young adult survivors of PBTs. METHODS: Data were collected from provincial government resources and drug formularies from 2012-2013 on the extent of coverage for GHRT based on a clinical case scenario representative of a young adult survivor of a PBT with childhood-onset radiation-induced GHD, the ingredient cost for GHRT and the applicable provincial public drug plan cost-sharing policies. A model was then created to simulate out-of-pocket costs incurred by a young adult male and a young adult female survivor of a PBT for one year of GHRT in each province with applicable cost-sharing arrangements and levels of low annual individual total income that best represent the majority of young adult survivors of PBTs. Out-of-pocket costs were expressed as a percentage of annual income. Comparisons were made between provinces descriptively, and variation among provinces was summarized statistically. RESULTS: Alberta, Manitoba, Ontario, Quebec, New Brunswick, and Newfoundland and Labrador provide coverage for GHD during adulthood on a case-by-case basis, while British Columbia, Saskatchewan, Nova Scotia and Prince Edward Island provide no coverage. The percentage of annual income to fund GHRT across the provinces without public coverage ranged from 14.4% to 25.5% for males and 21.5% to 38.3% for females, and with public coverage was 0.0% to 4.1% for males and 0.0% to 5.0% for females. INTERPRETATION: There are considerable out-of-pocket costs and variation in coverage provided by provincial public drug plans to fund GHRT for young adult survivors of PBTs with GHD. The implementation of a national drug formulary could potentially prevent undue financial hardship and remove disparities resulting from variations in provincial drug plans.

Parents' perspectives of life challenges experienced by long-term paediatric brain tumour survivors: work and finances, daily and social functioning, and legal difficulties.

BACKGROUND: Paediatric brain tumour survivors (PBTS) are at high risk for medical, neurocognitive and psychological sequelea during adulthood. Details illustrating the types and breadth of these chronic sequelae are essential to fully comprehend their impact on daily living. PURPOSE: This study describes Canadian parents of PBTS perspectives of life challenges experienced by their now adult son or daughter related to work and finances, daily and social functioning, and legal difficulties. METHOD: Parents of PBTS completed an anonymous online exploratory survey. FINDINGS: Forty-six of 60 invited parents completed the survey. Parents reported that PBTS experienced difficulty gaining or sustaining employment (65 %) because of their health and/or a disability and employers reticence to hire and adequately support PBTS. Independent living was considered unaffordable for PBTS who received a disability allowance (82 %) and those who were employed (50 %). Thirty percent indicated their family experienced hardship because of PBTS medical expenses, which were usually paid for out of pocket (76 %). Although the majority of PBTS were independent with daily tasks and social functioning, a subgroup required continuous support. Forty percent of employed PBTS received limited assistance to accommodate their special needs. Parents indicated their son or daughter had been the victim of theft, fraud or assault (37 %), and commonly considered them vulnerable, in need of protection and feared for their future safety. CONCLUSION: Research that further illuminates the hardships facing PBTS and informs the development of support and resources to address PBTS vulnerabilities is warranted. IMPLICATIONS FOR CANCER SURVIVORS: PBTS are at risk for unemployment, financial challenges and legal difficulties, which appear to be poorly addressed by health and social programs.