Disparities in health care affordability among childhood cancer survivors persist following the Affordable Care Act

2021 ◽  
Author(s):  
Mark A. Fiala
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Affordable Care Act ◽  
Childhood Cancer Survivors ◽  
The Affordable Care Act ◽  
Health Care Affordability

scholarly journals Disparities in Healthcare Affordability Among Childhood Cancer Survivors Persist Following the Affordable Care Act

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2182-2182
Author(s):  
Mark A. Fiala ◽  
Jin Huang ◽  
Mary E. Hartman
Keyword(s):  
Cancer Survivors ◽  
Predominantly White ◽  
Childhood Cancer ◽  
Affordable Care Act ◽  
Childhood Cancer Survivors ◽  
Psychosocial Challenges ◽  
The Affordable Care Act ◽  
The Difference ◽  
The Cost

Background and Purpose: Childhood cancer survivors (CCSs) face a number of long-term physical and psychosocial challenges into adulthood. Prior to implementation of the Affordable Care Act (ACA), cancer was deemed a "pre-existing condition" which often excluded CCSs from obtaining insurance or drastically increased the cost to do so. As a result, CCSs were more likely to report healthcare affordability issues which lead to many delaying or skipping needed healthcare. The ACA included a provision which prohibited discrimination based on pre-existing conditions which went into effect in January 2014. Following implementation, the rate of uninsured CCSs has decreased nearly 40%; however, it is unclear if healthcare affordability remains an issue among this group. Methods: Data from the National Heath Information Survey (NHIS) was used to compare the self-reported affordability of healthcare between CCS and non-cancer adults. The analysis was limited to those 21-65 at time of survey as older adults are eligible for Medicare and would have been less impacted by the provision. CCSs were matched 1:3 to non-cancer controls based on demographics. A difference-in-differences analysis was used to compare the pre- (2011-2013) and post-ACA (2015-2017) changes on healthcare affordability between CCS and non-cancer adults, adjusting for demographics. Results: There were 309 CCSs identified in the 2011-2013 cohort and 324 in the 2015-2017 cohort. The two cohorts were similar in demographic composition. The median age was 36 and 40, respectively, and both were predominantly white and female. These were matched to cohorts of 927 and 972 non-cancer controls, respectively. In the 2011-2013 cohort, 24% of CCS reported being uninsured; 45% had private coverage, 15% Medicaid, 11% Medicare, and 5% had other insurance or were unreported. 45% of CCSs reported difficulty paying for healthcare and 28% and 25%, respectively, reported delaying and skipping needed care due to costs. Compared to non-cancer controls, CCSs were 39% more likely to be uninsured after controlling for other factors (p = 0.046). CCSs were also 191% more likely to report difficulty paying for healthcare, 131% more likely to report delaying and 194% more likely to report skipping needed healthcare due to costs (all p < 0.001). In the 2015-2017 cohort, 13% of CCS reported being uninsured; 49% had private coverage, 23% Medicaid, 12% Medicare, and 3% had another insurance or insurance status was unknown. 36% of CCSs reported difficulty paying for healthcare and 21% and 14%, respectively, reported delaying and skipping needed care due to costs. CCSs were not more likely than the non-cancer controls to be uninsured after controlling for other factors (p = 0.313). However, CCSs were 130% more likely to report difficulty paying for healthcare (p < 0.001), 88% more likely to report delaying (p < 0.001) and 72% more likely to report skipping needed healthcare due to costs (p = 0.008). The difference-in-difference analysis suggested skipping needed care was the only indicator of disparity measured that improved statistically post-ACA. In respect to non-cancer controls, the disparity in skipping needed care was reduced by 63% (p = 0.040). Conclusions and Implications: Following implementation of the ACA, a smaller proportion of CCSs report being uninsured. Medicaid expansion, which also occurred as part of the ACA in many states, may have contributed more to the improving uninsured rates than elimination of the pre-existing condition clause. Despite the improvements, CCSs still face disparate challenges in paying for healthcare. CCSs are at greater risk for chronic health conditions, have higher out-of-pocket medical costs, and lower average incomes than their peers, all which likely contribute to the disparity. Disclosures Fiala: Incyte: Research Funding.

scholarly journals Mixed methods assessment of impact on health awareness in adult childhood cancer survivors after viewing their personalized digital treatment summary and follow-up recommendations

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Helena M. Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
The Self ◽  
Health Related ◽  
Treatment Summary

Abstract Background The survival rate after childhood cancer has improved to 80%. The majority of childhood cancer survivors (CCS) will experience late complications which require follow up care, including access to their individual cancer treatment summary. The need to understand CCS needs and preferences in terms of ways to receive information e.g. digitally, becomes important. This study aims to through a mixed methods approach a) examine how CCS’ health awareness was impacted by viewing their personalized digital treatment summary and follow-up recommendations, b) explore E health literacy, and c) determine self-reported survivorship experiences and health care usage. Methods Survivors with a recent visit to the Late effects clinic were eligible for the study (n = 70). A representative sample of primary diagnoses were invited (n = 28). 16 CCS were enrolled. Recent medical visits, e health literacy and impressions of the digital treatment summary were assessed by a survey in conjunction with viewing their digital treatment summary on a computer screen. Their experience of reading and understanding their digital treatment summary in the context of their health related survivorship experiences were assessed in focus groups. The transcribed data was analyzed with conventional qualitative content analysis. Results The self-reported medical problems largely reflected that, only 6,3% reported no cancer-related reasons for seeking medical attention. Of the medical specialists, the primary care physician was the most frequently visited specialist (68.8%). High E health literacy was not associated with treatment features but with educational level (p = 0.003, CI: 3.9–14.6) and sex (p = 0.022, CI: − 13.6- -1.3). All survivors graded the digital treatment summary above average in terms of being valuable, agreeable and comprehensive. The focus group interviews identified three themes: 1) The significance of information, 2) The impact of awareness; and 3) Empowerment. Conclusions Reading the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. A digital treatment summary, provided by knowledgeable health care professionals, may increase the self-managed care and adherence to follow-up recommendations. Further insights into e health literacy in larger samples of CCS may determine to what extent health-related information can be communicated via digital resources to this at risk population.

scholarly journals Determining transition readiness in Swiss childhood cancer survivors – a feasibility study

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Maria Otth ◽  
Patrick Wechsler ◽  
Sibylle Denzler ◽  
Henrik Koehler ◽  
Katrin Scheinemann
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Self Management ◽  
Transition Readiness ◽  
Long Term Follow Up ◽  
Time Point

Abstract Background The successful transition of childhood cancer survivors (CCSs) from pediatric to adult long-term follow-up care is a critical phase, and determining the right time point can be challenging. We assessed the feasibility of the use of existing transition readiness tools in the context of the Swiss health care system, assessed partly transition readiness in Swiss CCSs, and compared our findings with Canadian CCSs for which these tools were originally developed. Methods We officially translated the Cancer Worry Scale (CWS) and Self-Management Skill Scale (SMSS) into German and integrated them into this cross-sectional study. We included CCSs attending the long-term follow-up (LTFU) clinic in the Division of Oncology-Hematology, Department of Pediatrics, Kantonsspital Aarau. We used descriptive statistics to describe transition readiness. Results We randomly recruited 50 CCSs aged ≥18 years at participation. The CCSs had a median CWS score of 62 (interquartile range 55–71), indicating a moderate level of cancer-related worry. Despite high self-management skills, some answers showed a dependency of CCSs on their parents. Our experience shows that the CWS and SMSS are easy for Swiss CCSs to use, understand, and complete. The interpretation of the results must take differences in health care systems between countries into account. Conclusions The translated CWS and SMSS are appropriate additional measures to assess transition readiness in CCSs. These scales can be used longitudinally to find the individual time point for transition and the completion by CCSs enables the health care team to individualize the transition process and to support the CCSs according to their individual needs.

Mixed methods assessment of impact on health awareness in adult childhood cancer survivors after viewing their personalized digital treatment summary and follow-up recommendations.

2020 ◽  
Author(s):  
Helena Linge ◽  
Cecilia Follin
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Literacy ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
The Self ◽  
Health Related ◽  
Treatment Summary

Abstract Background: The survival rate after childhood cancer has improved to 80%. The majority of childhood cancer survivors (CCS) will experience late complications which require follow up care, including access to their individual cancer treatment summary. The need to understand CCS needs and preferences in terms of ways to receive information e.g. digitally, becomes important. This study aims to through a mixed methods approach a) examine how CCS’ health awareness was impacted by viewing their personalized digital treatment summary and follow-up recommendations, b) explore E health literacy, and c) determine self-reported survivorship experiences and health care usage. Methods Survivors with a recent visit to the Late effects clinic were eligible for the study (n=70). A representative sample of primary diagnoses were invited (n=28). 16 CCS were enrolled. Recent medical visits, e health literacy and impressions of the digital treatment summary were assessed by a survey in conjunction with viewing their digital treatment summary on a computer screen. Their experience of reading and understanding their digital treatment summary in the context of their health related survivorship experiences were assessed in focus groups. The transcribed data was analyzed with conventional qualitative content analysis. Results The self-reported medical problems largely reflected that, only 6,3% reported no cancer-related reasons for seeking medical attention. Of the medical specialists, the primary care physician was the most frequently visited specialist (68.8%). High E health literacy was not associated with treatment features but with educational level (p=0.003, CI: 3.9-14.6) and sex (p=0.022, CI :-13.6- -1.3). All survivors graded the digital treatment summary above average in terms of being valuable, agreeable and comprehensive. The focus group interviews identified three themes: 1) The significance of information, 2) The impact of awareness; and 3) Empowerment. Conclusions Reading the treatment summaries furthered the survivors understanding of their health situation and consequently aided empowerment. A digital treatment summary, provided by knowledgeable health care professionals, may increase the self-managed care and adherence to follow-up recommendations. Further insights into e health literacy in larger samples of CCS may determine to what extent health-related information can be communicated via digital resources to this at risk population.

Patterns and drivers of health care use in long-term childhood cancer survivors: A systematic review

2017 ◽  
Vol 120 ◽  
pp. 60-76 ◽  
Author(s):  
J. van Breeschoten ◽  
R. De Abreu Lourenco ◽  
C. Signorelli ◽  
M. Haas ◽  
R.J. Cohn ◽  
...  
Keyword(s):  
Systematic Review ◽  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Health Care Use

Emergency department (ED) visits and hospitalizations in survivors of childhood cancer in the Childhood Cancer Survivor Study.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 10056-10056
Author(s):  
Valerie Arsenault ◽  
Weiyu Qiu ◽  
Qi Liu ◽  
Jennifer Yeh ◽  
Wendy Leisenring ◽  
...  
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Relative Rate ◽  
Childhood Cancer Survivors ◽  
Factors Associated ◽  
Female Sex ◽  
Hospitalization Rates ◽  
Younger Age ◽  
Ed Visits

10056 Background: Chronic health conditions are frequent among childhood cancer survivors and lead to increased health care resource utilization. We compared rates of ED visits and hospitalizations between survivors and siblings. Methods: Analyses included 10,762 ≥5-year survivors and 2,069 siblings who completed a questionnaire from 2014-2016. We calculated ED visits and non-obstetric hospitalizations in the last 12 months per 1,000 person-years (PY) and evaluated cause-specific hospitalization rates using ICD-10 categories. Multivariable Poisson regression models evaluated predictors of survivor visits. Results: Median age in survivors and siblings was 35.3 years (interquartile range [IQR] 29.0-43.1) and 42.9 years (IQR 35.6-50.2), respectively; time from cancer diagnosis was 27.8 years (IQR 21.7-34.1). 24.2% of survivors and 16.2% of siblings had ≥1 ED visit (p < 0.001); rates were 521/1,000 PY for survivors and 246/1,000 PY for siblings (age/sex-adjusted relative rate [RR] 2.0; 95% confidence interval [CI] 1.7 - 2.3). Factors associated with increased survivor ED visits were black race (RR 1.6, CI 1.2-2.0), being obese (RR 1.4, CI 1.2-1.7) or underweight (RR 1.9, CI 1.2-3.0), female sex (RR 1.3, CI 1.1-1.5), younger age (p = 0.02) or abdomen/pelvis (RR 1.2, CI 1.1-1.4) or brain irradiation (RR 1.2, CI 1.0-1.4). 13.3% of survivors and 8.3% of siblings had ≥1 hospitalization (p < 0.001); rates were 219/1,000 PY for survivors and 130/1,000 PY for siblings (RR 1.9; CI 1.3 - 2.9). Factors associated with increased survivor hospitalizations were female sex (RR 1.3, 1.1-1.5), younger age (p < 0.0001), being obese (RR 1.3, CI 1.0-1.6) or underweight (RR 1.5, 95% CI 1.1-2.2) or platinum chemotherapy exposure (RR 1.6, CI 1.3-2.0). The most common indications for hospitalization were diseases of the digestive (21.9/1,000 PY; CI 18.7 - 25.7) and circulatory (20.9/1,000 PY; CI 17.8 – 24.4) systems. Leukemia survivors had the highest ED visit and hospitalization rates. Conclusions: Childhood cancer survivors had a 2-fold increased likelihood of an ED visit or hospitalization compared with their siblings. This increases the economic burden on survivors and the health care system.

Identifying Barriers Among Childhood Cancer Survivors Transitioning to Adult Health Care

2016 ◽  
Vol 34 (1) ◽  
pp. 20-27 ◽  
Author(s):  
Joanne Quillen ◽  
Holli Bradley ◽  
Christina Calamaro
Keyword(s):  
Health Care ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Online Survey ◽  
Childhood Cancer Survivors ◽  
Transition To Adult Care ◽  
Adult Health ◽  
Adult Care ◽  
Convenience Sample ◽  
Adult Health Care

The aim of this study was to identify and describe barriers of young adult childhood cancer survivors transitioning to adult health care within 5 years of leaving a pediatric oncology practice. Several barriers have been identified in the literature, but other obstacles as to why this vulnerable population may be avoiding health care are unknown. This is a descriptive pilot study of a convenience sample of childhood cancer survivors, currently 20 to 25 years of age, who were diagnosed at less than 21 years of age. The Transition to Adult Care Survey assessing survivor barriers is an online survey consisting of 15 questions, with a drop-down menu for answers and 2 open-ended questions. The survey was accessible by smartphone or computer. Standard descriptive statistics were used to describe variables of interest. Our population consisted of 48 childhood cancer survivors. Their mean age was 23.21 years. Only 74% reported following through with annual preventive screening, and 57% reported that they consider themselves at risk for further medical problems as a result of their cancer treatment. Lack of knowledge of the importance of health screening may be a potential barrier to consistent follow-up care.

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