Pan-Canadian consensus recommendations for proton beam therapy access in Canada.

PURPOSE: Proton Beam Therapy (PBT)is a treatment option for select cancer patients. It is currently not available in Canada. Assessment and referral processes for out-of-country treatment for eligible patients vary by jurisdiction, leading to variability in access to this treatment for Canadian cancer patients. The purpose of this initiative was to develop a framework document to inform consistent and equitable PBT access for appropriate patients through the creation of pan-Canadian PBT access consensus recommendations. MATERIALS AND METHODS: A modified Delphiprocess was used to develop pan-Canadian recommendations with input from 22 PBT clinical and administrative experts across all provinces, external peer-review by provincial cancer and system partners, and feedback from a targeted community consultation. This was conducted by electronic survey and live discussion. Consensus threshold was set at 70% agreement. RESULTS: Fourconsensus rounds resulted in a final set of 27 recommendations divided into three categories: patient eligibility (n = 9); program level (n = 10); and system level (n = 8). Patient eligibility included: anatomic site (n = 4), patient characteristics (n = 3), clinical efficacy (n = 2). Program level included: regulatory and staff requirements (n = 5), equipment and technologies (n = 4), quality assurance (n = 1). System level included: referral process (n = 5), costing, budget impact and quality adjusted life years (n = 2), eligible patient estimates (n = 1). Recommendations were released nationally in June 2021 and distributed to all 43 cancer programs in Canada. CONCLUSION: A pan-Canadian consensus-building approach was successful in creating an evidence-based, peer-reviewed suite of recommendations thatsupportapplication of consistent clinical criteria to inform treatment options, facility set-up and access to high quality proton therapy.

A cross-sectional assessment of long-term effects in adolescent and young adult head and neck cancer survivors treated with radiotherapy.

PURPOSE: Adolescent and young adult (AYA) head and neck (H&N) cancer survivors are at risk of long-term complications. A cross-sectional study of survivors recalled for clinical evaluation was performed to evaluate late effects in this population. METHODS: Surviving patients who had been diagnosed with H&N cancer between the ages of 15 and 39 years and treated with radiation therapy (RT) in British Columbia between 1970 and 2010 were invited to participate in this study. Survivors were assessed in consultation by a radiation oncologist for a complete history and physical exam. Comprehensive data collection of subjective and objective late effects of RT and screening investigations were completed. RESULTS: Of 36 AYA H&N participants, the majority were female (61%), and the most common tumour sites were thyroid (28%), oropharynx (17%), salivary gland (14%) and larynx (14%). Dental extractions post treatment was performed for 33% and dental implants for 17%. The majority (72%) reported xerostomia, 50% had dysphagia to solids and 25% hearing loss. Of the non-thyroid cancer patients who underwent RT to their neck, 45% developed hypothyroidism. There were 28% of participants with asymptomatic carotid stenosis and 27% with thyroid nodules; all were diagnosed after recall screening. CONCLUSIONS: Survivors of AYA H&N cancer treated with RT reported numerous long-term complications. Comprehensive follow-up and screening guidelines should be established for this at-risk population. IMPLICATIONS FOR CANCER SURVIVORS: AYA H&N cancer survivors and their primary care practitioners should be educated on screening recommendations and the risk of late effects.

Long-term effects of cancer on earnings of childhood, adolescent and young adult cancer survivors - a population-based study from British Columbia, Canada.

BACKGROUND: The patterns and determinants of long-term income among young people surviving cancer, and differences compared to peers, have not yet been fully explored. The objectives of this paper are to describe long-term income among young survivors of cancer, the impact of socio-demographic, disease, and treatment factors on long-term income, and income relative to the general population. METHODS: Retrospective cohort study with comparison group from the general population, using linked population-based registries, clinical data, and tax-records. Multivariate random effects regression models were used to determine survivor income, compare long-term income between survivors and comparators, and assess income determinants. Subjects included all residents of British Columbia (BC), Canada, diagnosed with cancer before 25 years of age and surviving 5 years or more. Comparators were selected from the BC general population matched by gender and birth year. RESULTS: Young cancer survivors earned significantly less than the general population. In addition, survivors of central nervous system tumors have significantly lower incomes than lymphoma survivors. Survivors who received radiation therapy have significantly lower income. Results should be interpreted with caution as the comparator group was matched by gender and date of birth. CONCLUSIONS: Depending on original diagnosis, treatment, and other characteristics, survivors face significantly lower income than peers and may require supports to gain and retain paid employment. Lower income will affect their opportunity for independent living, and will reduce productivity in the labour force.

Effects of 10 MV and Flattening-Filter-Free Beams on Peripheral Dose in a Cohort of Pediatric Patients.

PURPOSE: To assess the effect of flattening-filter-free (FFF) and 10 MV radiation therapy beams on the peripheral dose received by a population of pediatric patients undergoing volumetric modulated arc therapy (VMAT). METHODS AND MATERIALS: Twenty-six previously delivered 6 MV flattened VMAT pediatric radiation therapy treatments plans were replanned with 6 MV flattened, 6 MV FFF, and 10 MV FFF VMAT. Monte Carlo simulation code EGSnrc was used in conjunction with a measurement-based model to obtain 3-dimensional dose distributions. Peripheral dose delivered by FFF beams was compared with that delivered by 6 MV flattened beams. A statistical analysis was performed to determine whether certain clinical factors (eg, target volume, location) were associated with a change in integral relative radiation dose. Neutron dose measurements assessed the neutron contribution from the 6 MV flattened and 10 MV FFF x-ray beams. RESULTS: Both the 6 MV FFF and 10 MV FFF beams delivered significantly lower peripheral radiation doses than 6 MV flattened (P < .01). The dose reduction was of 3.9% (95% confidence interval [CI] 2.1-5.7) and 9.8% (95% CI, 8.0-11.6) at 5 cm from the PTV and 21.9% (95% CI, 13.7-30.1) and 25.6% (95% CI, 17.6-33.6) at 30 cm for 6 MV FFF and 10 MV FFF beams, respectively. The clinical factors examined did not have a significant effect on the relative magnitude of the peripheral dose reduction. The upper limit on the neutron dose was determined to be 203 µSv for the 6 MV flattened and 522 µSv for the 10 MV FFF beam. CONCLUSIONS: Both FFF beams significantly (P < .01) reduced the peripheral dose. 10 MV FFF was more effective at reducing peripheral dose at distances <5 cm from the PTV edge. The neutron doses delivered by all beams were <1% compared with the photon doses. 10 MV FFF should be used to minimize peripheral dose.

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.

Patterns of physician follow-up among young cancer survivors: report of the Childhood, Adolescent, and Young Adult Cancer Survivors (CAYACS) research program.

OBJECTIVE: To describe the frequency and pattern of physician visits in 1998 to 2000 among childhood and adolescent cancer survivors in British Columbia (BC), to compare their use of physician services with use in the general population, and to examine the effects of clinical and sociodemographic factors on care. DESIGN: Retrospective, observational, population-based cohort study, with a comparison group. Cohort records from population registries were linked to physician claim data and oncology visit records for 1998 to 2000. SETTING: Outpatient physician care in BC. PARTICIPANTS: All (N = 1157) survivors of cancer diagnosed before age 20 years in BC between 1970 and 1992 who survived at least 5 years after diagnosis, and an age-sex frequency-matched population sample of 11 570 individuals. MAIN OUTCOME MEASURES: Probability of a physician visit and frequency of physician visits. RESULTS: Approximately 97% of survivors saw at least 1 physician in the 3-year period, compared with 50% of the general population sample. The probability of a GP visit was 96% higher (adjusted 95% confidence interval [CI] 1.8 to 2.1), and the likelihood of a specialist visit was 157% higher (adjusted 95% CI 2.4 to 2.8) than for the general population. Survivors were more than twice as likely to see GPs at least 10 times (adjusted relative risk 2.23, 95% CI 2.0 to 2.4) and had 49% more visits than the general population. Cancer diagnosis and treatment affected visit patterns, but socioeconomic status and rural residency did not significantly affect the probability of a visit. CONCLUSION: Demand for physician care among childhood and adolescent cancer survivors is considerably greater than for the general population, and this need persists many years after diagnosis. Physicians need information on the unique health care requirements of this patient group in order to provide appropriate care.

Prospective evaluation of legal difficulties and quality of life in adult survivors of childhood cancer.

BACKGROUND: Adult survivors of childhood cancer (ASCC), especially those of the central nervous system (CNS), have increased risks of educational and social difficulties. It is therefore hypothesized they are more likely to encounter legal difficulties (LDs), such as workplace discrimination and disability insurance denials, which may negatively affect their quality of life (QoL). PROCEDURE: We developed a survey to collect information on patients' legal needs. QoL was assessed using the Functional Assessment of Cancer Therapy (FACT). RESULTS: We prospectively approached 112 ASCC, 111 (99.1%) of whom completed the survey. The median age of respondents was 7 years at diagnosis and 31 years at survey completion. CNS tumors were the most common malignancy (32.4%). LDs were common overall (40.7%), though more prevalent in patients with CNS versus non-CNS tumors (58.6% vs. 32.3%; P = 0.023). The most prevalent LD was workplace discrimination (58.3%). On multivariate analysis, CNS tumor was the only variable significantly associated with LDs (OR = 4.49, P = 0.041). Individuals with LDs had lower QoL scores compared to those without LDs (79.96 versus 91.83 on the FACT; P = 0.005). On multivariate analysis, individuals with LDs had lower QoL scores (14.95 points lower on the FACT), which is both clinically and statistically significant (P = 0.047). CONCLUSIONS: Legal difficulties are common in adult survivors of childhood cancer, especially those with brain tumors. Furthermore, individuals with legal difficulties have worse quality of life. Research is needed to develop effective and accessible legal resource programs.