Health insurance literacy among patients receiving outpatient cancer treatment.

BACKGROUND: This study examines patients' understanding of health insurance terms and concepts and quantifies health insurance literacy (HIL) levels by key sociodemographic factors. METHODS: This study included 393 adult patients with cancer (>18 years old) receiving treatment in two ambulatory infusion centers: Mayo Clinic in Phoenix, Arizona and the University of Mississippi Medical Center in Jackson, Mississippi. Respondents' perceptions of their HIL were assessed using the Health Insurance Literacy Measure (HILM), a validated 21-item measure of a consumer's ability to select and use health insurance (HIL self-efficacy). Respondents' knowledge of health insurance concepts (HIL knowledge) was measured using 10 items created by the Kaiser Family Foundation. The number of correct answers was categorized into three levels: 0-4 (low knowledge), 5-6 (moderate knowledge), and 7-10 (high knowledge). Multivariable logistic regressions were used to compare correct answers to HIL knowledge questions by HIL self-efficacy. RESULTS: Nearly three-quarters of patients had high HIL self-efficacy and high HIL knowledge (70.5%), understanding basic insurance terms, such as premiums and deductibles. Relatively low percentages of patients correctly answered questions about the meaning of provider networks, health insurance formularies, and calculating out-of-pocket spending in scenarios when insurers pay a portion of allowed charges. Lower HIL knowledge was more common among patients with less educational attainment (

A Study of the Connection Between Health Insurance Literacy and Health Status: Evidence from the US Healthcare Reform Monitoring Survey.

This study examines the relationship between health insurance literacy, as indicated by confidence in comprehending health insurance terms, and health status using cross-sectional data from 8 waves of the Health Reform Monitoring Survey (HRMS), covering 61,895 individuals from 2013 to 2017. An ordered logistic regression model was employed with self-rated health status on a five-point Likert scale as the dependent variable and the score of confidence in understanding health insurance terms as the primary independent variable. The model adjusts for variables such as access to care, insurance status, concerns about affordability leading to missed care, household size, family income, employment, education, race, marital status, and gender. Results suggest a positive association between higher confidence in understanding health insurance and superior health statuses. These findings underscore the significance of improving health insurance literacy and advocating for potential policy interventions to enhance public understanding of health insurance benefits and coverage options.

The role of health insurance literacy in the process and outcomes of choosing a health insurance policy in the Netherlands.

In several countries, citizens are expected to be critical consumers when choosing a health insurance policy. However, there are indications that citizens do not always have the sufficient skills, so called health insurance literacy (HIL), to do this. We investigated whether the level of HIL among Dutch citizens is related to the way in which they experience the process of choosing a policy, and furthermore whether it is related to their health insurance choices. We obtained information by sending questionnaires to members of the Nivel Dutch Health Care Consumer Panel in 2020. Of the 1,500 approached, 806 panel members participated (response rate 54%). Our results indicate that, compared to those with a high HIL, respondents with a low HIL more often find choosing a health insurance policy difficult, not interesting, and boring, and less often consider it important and worthwhile. Furthermore, they make less use of the opportunity to switch from one health insurer to another. However, they do still opt for a supplementary insurance policy and a voluntary deductible to the same extent as citizens with a high HIL. We conclude that the HIL level among Dutch citizens is related to the way in which they experience the process of choosing a health insurance policy and to the extent to which they switch from one insurer to another. But it is not related to their health insurance choices. Follow-up research should focus on how citizens with a low HIL can be better supported when choosing a health insurance policy.

The Swiss Health Insurance Literacy Measure (HILM-CH): Measurement Properties and Cross-Cultural Validation.

BACKGROUND: Most consumers face difficulties when choosing and navigating health insurance plans. Health insurance literacy (HIL) has been discussed as a critical lever to ensure efficient choices and navigation in choice-based health insurance systems. Still, existing evidence about HIL mainly comes from the US, and the only validated scale, the Health Insurance Literacy Measure (HILM), may not be adequate to measure HIL outside US samples. This paper describes the measurement properties of the Swiss Health Insurance Literacy Measure (HILM-CH), the first scale to measure HIL in Switzerland. METHODS: The items of the HILM-CH were adapted from the HILM in German, French, and Italian. A panel of experts refined it to ensure its suitability for the Swiss context. The final version of the HILM-CH contains 21 items, and other relevant measures were administered in the Swiss Health Insurance Literacy Survey to a sample of 6036 insurees. Measurement properties were investigated overall and per linguistic group. Internal reliability was determined using Cronbach's alphas. Criterion validity was examined through convergent and concurrent validity of the HILM-CH. The construct validity was assessed using factor analysis. Measurement invariance of the HILM-CH between linguistic regions was further evaluated using multiple-group confirmatory factor analyses. RESULTS: The HILM-CH had acceptable to good reliability (alphas between 0.70 and 0.91). Concurrent and convergent validity showed that HILM-CH is a good measurement of HIL. Factor analysis revealed a four-factor model and showed an acceptable fit to the data (CFI= 0.977; TLI = 0.974; RMSEA = 0.061; SRMR = 0.032). Using the established four-factor model, measurement invariance was established across Switzerland's German, French, and Italian-speaking regions. CONCLUSIONS: The HILM-CH is a reliable and valid measure of HIL across Switzerland's German, French, and Italian-speaking regions. It can be used in future research to find associations between HIL and individual characteristics.

Association of Health Insurance Literacy with Health Care Utilization: a Systematic Review.

BACKGROUND: Given increasing numbers of people experiencing transitions in health insurance due to declines in employer-sponsored insurance and changes in health policy, the understanding and application of health insurance terms and concepts (health insurance literacy) may be important for navigating use of health care. The study objective was to systematically review evidence on the relationship between health insurance literacy and health care utilization. METHODS: Medline, SCOPUS, Web of Science, CINAHL, PsychInfo, Cochrane Library, and reference lists of published literature were searched in August 2019. Quantitative, qualitative, and intervention studies that assessed the association of health insurance literacy as the exposure and health care utilization as the outcome were identified, without language or date restrictions. Outcomes were independently assessed by 2-3 reviewers. RESULTS: Twenty-one studies including a total of 62,416 subjects met inclusion criteria: three interventional trials, two mixed-methods studies, and sixteen cross-sectional studies. Ten of thirteen preventive care studies suggested that higher health insurance literacy was associated with greater utilization of primary care and other preventive services. Eight of nine studies of care avoidance demonstrated that individuals with lower health insurance literacy were more likely to delay or avoid care. A few studies had mixed results regarding the utilization of emergency department, inpatient, and surgical care. DISCUSSION: The emerging literature in this area suggests that health insurance literacy is an important factor that can enable effective utilization of health care, including primary care and preventive services. However, the literature is limited by a paucity of studies using validated tools that broadly measure health insurance literacy (rather than testing knowledge of specific covered services). Improving health insurance literacy of the general public and increasing plain language communication of health insurance plan features at the point of health care navigation may encourage more effective and cost-conscious utilization.

"I thought there would be more I understood": health insurance literacy among adolescent and young adult cancer survivors.

BACKGROUND: Health insurance literacy is crucial for navigating the US healthcare system. Low health insurance literacy may be especially concerning for adolescent and young adult (AYA) cancer survivors. To describe AYAs' health insurance literacy, we conducted semi-structured interviews with AYA survivors, on and off of treatment. METHODS: We interviewed 24 AYA cancer survivors (aged 18-39 years) between November 2019 and March 2020. Interviews were recorded, transcribed, and quality-checked. Using two cycles of structured coding, we explored AYAs' health insurance literacy and examined thematic differences by policy holder status and age. RESULTS: AYAs were 58.3% female, 79.2% non-Hispanic White, 91.7% heterosexual, and 62.5% receiving cancer treatment. Most participants had employer-sponsored health insurance (87.5%), and 41.7% were their own policy holder. Four themes emerged; in the first theme, most AYAs described beginning their cancer treatment with little to no understanding of their health insurance. This led to the three subsequent themes in which AYAs reported: unclear expectations of what their insurance would cover and their out-of-pocket costs; learning about insurance and costs by trial and error; and how their health insurance literacy negatively impacted their ability to navigate the healthcare system. CONCLUSIONS: Our findings, while requiring confirmation in larger samples and in other health systems, suggest that the health insurance literacy needed to navigate insurance and cancer care is low among US AYA survivors and may have health and financial implications. As the burden of navigating insurance is often put on patients, health insurance education is an important supportive service for AYA survivors on and off of treatment.

Digital Solutions to Improve Health Insurance Literacy.

The American healthcare system has become one of the world's most complex for both patients and healthcare providers to navigate, particularly in regards to health insurance. This editorial piece further explores the problems that complexities in health insurance create, and several solution proposals to provide patients with educational resources concerning this important topic, in theory, leading to better decision-making in regards to health insurance.

The association of health insurance literacy and numeracy with financial toxicity and hardships among colorectal cancer survivors.

PURPOSE: In this study, we examined the association of financial hardship measured by material financial burden and financial toxicity with health insurance literacy and numeracy among colorectal cancer survivors. The lack of evidence on the impact of cost-related health literacy, specifically health insurance literacy and numeracy, on financial toxicity among cancer survivors warrants further research. METHODS: Between January and November 2019, we used a cross-sectional research design to collect surveys from 104 colorectal cancer survivors (diagnosed within last 5 years) from the Kentucky Cancer Registry. Survey items assessed health insurance literacy (measured by confidence and behaviors in choosing and using health insurance), numeracy, material financial burden, and financial toxicity, in addition to socio-demographic variables. Survey data were subsequently linked to the participant's cancer registry record. Data were analyzed using descriptive, bivariate, and multiple linear regression analyses. RESULTS: The mean financial toxicity score was 24.5, with scores ranging from 3 to 43 (higher scores indicating greater financial toxicity). Eighty percent of participants indicated they had experienced one or more material burdens related to their cancer. The majority had adequate health insurance (79%); however, the majority also had low numeracy (84%). After controlling for socio-demographic covariates, significant predictors of greater financial toxicity were high material burden scores, low health insurance literacy, and low numeracy. CONCLUSIONS: Findings indicate the need to develop programs and interventions aimed at improving health insurance literacy and numeracy as a strategy for reducing financial toxicity and hardships among colorectal cancer survivors.

Addressing Health Insurance Literacy Gaps in an Urban African American Population: A Qualitative Study.

Health insurance and health systems literacy needs are evolving with changes to the U.S. healthcare system. Following the implementation of the Affordable Care Act, many residents in West Louisville, Kentucky, a predominantly African American community, gained health insurance coverage for the first time. A qualitative study was conducted to assess residents' health insurance and health systems needs and to identify ways of assisting residents with navigating the healthcare system and utilizing their health insurance coverage. Twelve focus groups were conducted with a total of eighty-seven residents. Round one explored participants' experiences with health insurance, and round two examined their health information delivery preferences. An inductive thematic analysis was performed. Participants revealed the complexity of the health insurance system, many citing difficulty understanding health insurance concepts and finding suitable healthcare providers. High costs, mistrust in the healthcare system, and perceived public-private disparities were barriers to effective health insurance utilization. Health insurance materials in their current form have limited value in translating health insurance and health systems information to the West Louisville population. Alternative forms of information delivery, such as locally accessible and culturally competent community health workers may be better received and more successfully utilized by the community.

Infusing Adult Education Principles Into a Health Insurance Literacy Program.

Health insurance literacy is an emerging concept in the health education and health promotion field. The passage of the Affordable Care Act highlighted the link between health insurance and health outcomes. However, the law does not specifically address how the public should be educated on choosing an appropriate health insurance plan. Research shows adults, regardless of previous health insurance status, are likely confused and uncertain about their selection. The University of Maryland Extension developed and created health insurance Smart Choice Health Insurance™ to reduce confusion and increase confidence and capability to make this decision. Andragogy, an adult learning theory, was used to guide the development of the program and help ensure best practices are used to achieve desired outcomes. Using the six principles of andragogy, the team incorporated reality-based case studies, allowed adults time to practice, and emphasized choice making and many other elements to create an atmosphere conducive to adult learning. Results from Smart Choice indicate the program is successful in reducing confusion and increasing confidence. Furthermore, feedback from participants and trained educators indicates that adults were engaged in the program and found the materials useful. Based on program success, creation of new health insurance literacy programs grounded in adult education principles is under way.

Tobacco use and health insurance literacy among vulnerable populations: implications for health reform.

BACKGROUND: Under the Affordable Care Act (ACA), millions of Americans have been enrolling in the health insurance marketplaces. Nearly 20% of them are tobacco users. As part of the ACA, tobacco users may face up to 50% higher premiums that are not eligible for tax credits. Tobacco users, along with the uninsured and racial/ethnic minorities targeted by ACA coverage expansions, are among those most likely to suffer from low health literacy - a key ingredient in the ability to understand, compare, choose, and use coverage, referred to as health insurance literacy. Whether tobacco users choose enough coverage in the marketplaces given their expected health care needs and are able to access health care services effectively is fundamentally related to understanding health insurance. However, no studies to date have examined this important relationship. METHODS: Data were collected from 631 lower-income, minority, rural residents of Virginia. Health insurance literacy was assessed by asking four factual questions about the coverage options presented to them. Adjusted associations between tobacco use and health insurance literacy were tested using multivariate linear regression, controlling for numeracy, risk-taking, discount rates, health status, experiences with the health care system, and demographics. RESULTS: Nearly one third (31%) of participants were current tobacco users, 80% were African American and 27% were uninsured. Average health insurance literacy across all participants was 2.0 (SD 1.1) out of a total possible score of 4. Current tobacco users had significantly lower HIL compared to non-users (-0.22, p < 0.05) after adjustment. Participants who were less educated, African American, and less numerate reported more difficulty understanding health insurance (p < 0.05 each.) CONCLUSIONS: Tobacco users face higher premiums for health coverage than non-users in the individual insurance marketplace. Our results suggest they may be less equipped to shop for plans that provide them with adequate out-of-pocket risk protection, thus placing greater financial burdens on them and potentially limiting access to tobacco cessation and treatment programs and other needed health services.

Smart Choice Health Insurance©: A New, Interdisciplinary Program to Enhance Health Insurance Literacy.

Smart Choice Health Insurance© is a consumer education program based on the definition and emerging measurement of health insurance literacy and a review of literature and appropriate theoretical frameworks. An interdisciplinary team of financial and health educators was formed to develop and pilot the program, with the goal of reducing confusion and increasing confidence in the consumer's ability to make a smart health insurance decision. Educators in seven states, certified to teach the program, conducted workshops for 994 consumers. Results show statistically significant evidence of increased health insurance literacy, confidence, and capacity to make a smart choice health insurance choice. Discussion centers on the impact the program had on specific groups, next steps to reach a larger audience, and implications for educators, consumers, and policymakers nationwide.

Unmet need for medical care among Medicare beneficiaries by health insurance literacy and disability.

BACKGROUND: Navigating the US healthcare system requires considerable health insurance literacy, especially for adults with disabilities. Limited health insurance literacy may lead to suboptimal treatment, leading to unmet need for medical care. OBJECTIVE: We examined whether unmet need for medical care among Medicare beneficiaries differs by health insurance literacy and disability status. METHODS: Using data from the 2010-2019 Medicare Current Beneficiary Survey, we identified 48,989 Medicare beneficiaries, including those in traditional Medicare and Medicare Advantage. Our outcomes were three measures of unmet need for medical care. Our key independent variables were health insurance literacy and disability status. For each outcome, we estimated the adjusted rates of reporting unmet need for medical care by health insurance literacy and disability while controlling for individual-level characteristics. RESULTS: Unmet need for medical care was higher among Medicare beneficiaries with disabilities across all outcomes, but the highest rates were among those with disabilities and limited health insurance literacy (27.4% [95% CI: 24.9-29.9] for experiencing delayed care, 17.7% [95% CI: 15.6-19.9] for experiencing trouble in getting needed care, and 20.8% [95% CI: 18.5-23.1] for not seeing a doctor despite medical need). Notably, there was an increasing trend in experiencing delayed care and trouble getting needed care among Medicare beneficiaries with disabilities over time, especially for those with limited health insurance literacy. CONCLUSIONS: Medicare beneficiaries with disabilities and limited health insurance literacy face disproportionate unmet need for medical care. Policies are needed to ensure that these beneficiaries have access to clear and accessible health insurance information.

Public Health Insurance Status and Utilization of Healthcare Services Across India: A Narrative Review.

Health insurance literacy gauges how knowledgeable people are regarding the comparison of health insurance plans to find out the optimal health plan that suits their needs and preferences. Enrolling in a comprehensive plan and proactively addressing health and financial aspects can fortify the stability of families. The plan needs to be used effectively by adapting to evolving circumstances and prioritizing the well-being and prosperity of the household. Having public health insurance can significantly impact an individual's utilization of healthcare services. Having health insurance encourages individuals to promptly seek medical attention without hesitating or avoiding treatment due to financial worries. This results in higher utilization of healthcare services, encompassing routine check-ups, preventive care, and timely intervention for illnesses and injuries. Public health insurance can also improve access to specialized care and expensive treatments that may otherwise be unaffordable for individuals without insurance. By having health insurance, individuals and families can experience a decrease in the economic strain associated with healthcare expenses, thereby enhancing the accessibility and affordability of healthcare services.

Empowering emerging adults with type 1 diabetes: crafting a financial and health insurance toolkit through community-based participatory action research.

BACKGROUND: Emerging adults aged 18-30 years face challenges during life transitions, with an added burden of navigating the health care system and additional costs associated with diabetes. This stress is compounded by overall low levels of health insurance literacy in this population, as people may not know about available financial and health care resources to minimize suboptimal diabetes outcomes. This study aimed to tailor a financial and health insurance toolkit to emerging adults with type 1 diabetes, including racially, ethnically diverse, and Medicaid-insured individuals, through community-based participatory action research. METHODS: An academic research team and community members from a national organization held six online community advisory board (CAB) content-creation meetings to understand how to tailor a financial and health insurance Toolkit. The CAB was comprised of six racially and insurance-diverse emerging adults with type 1 diabetes and four content experts (clinical, financial, and insurance). Six 60-minute online CAB meetings were held via University Hospitals (UH)-encrypted Zoom over five months. Pre-reading materials were emailed to CAB members before the meetings. A moderator established the purpose of each meeting and briefly discussed meeting rules before each meeting commenced. During the meetings, the moderator guided the discussions and provided the CAB members opportunities to respond and build on one another's feedback. A deductive thematic qualitative analysis was utilized. Three researchers independently coded the cross-referenced and de-identified CAB meeting transcripts and then convened to reach a group consensus. Two CAB members performed member-checking. RESULTS: The following key themes emerged to tailor the Toolkit: ensuring that content covers empowerment and self-advocacy, including genuine stories and multimedia visuals for aesthetics, addressing clinician bias, acknowledging racial and ethnic disparities in care, incorporating cultural representation, and demystifying Medicaid stigma. CONCLUSIONS: By successfully partnering with the CAB and a community organization through a community-based participatory action research approach, we will develop a financial and health insurance Toolkit tailored to the needs of racially and ethnically diverse and Medicaid-insured emerging adults with type 1 diabetes.

AIM OF THE RESEARCH: This study aims to tailor a financial and health insurance Toolkit to emerging adults, ages 18­30, with type 1 diabetes. Including the insight from racially and ethnically diverse and Medicaid-insured individuals in developing the Toolkit is essential. BACKGROUND TO THE RESEARCH: Emerging adults with type 1 diabetes have stressful challenges such as navigating the healthcare system, the costs of diabetes, and general diabetes self-management. This stress is worsened by low levels of health insurance literacy and leads to suboptimal diabetes outcomes. This issue affects many individuals but dramatically impacts those who are racially and ethnically diverse or Medicaid-insured. DESIGN AND METHODS USED: Six online content-creation meetings were held to understand the Toolkit content needs and preferences. We analyzed the meeting transcripts to uncover common themes. Patient and public involvement: An academic research team, a national organization (The Diabetes Link), and a Community Advisory Board (CAB) partnered together. The CAB members were racially and insurance-diverse emerging adults with type 1 diabetes and content (financial, insurance, clinical diabetes) experts. We will continue to collaborate with the CAB members to develop a research protocol to test the effects of the Toolkit. DISSEMINATION: The research findings will be shared with young adult type 1 diabetes stakeholders, healthcare providers, and community and professional organizations. Dissemination strategies will include publications, community and scientific conference presentations, community events, and social media resources and content. The finalized Toolkit will be publicly available on the Diabetes Link Resource Hub.

Health Insurance Literacy and Medical Care Avoidance Among International Students: A Case Study.

Objectives: This research examines the health insurance literacy and healthcare utilization of international students attending a university in the US Midwest. Methods: One hundred and forty-three undergraduate and graduate students attending a midsize metropolitan university in the Midwest completed an online survey in early 2022. Results: Many students surveyed could not identify the definitions of basic terms, such as copay. Furthermore, about 80% of students surveyed could not determine their financial responsibilities in two medical settings. Regression results show that the continent they are from and the length of their stay in the United States significantly predict their understanding of key health insurance terms. More than half of the international students surveyed indicated they often feel confused about their health insurance (57.34%). Only about 20% have delayed or skipped care due to unfamiliarity with the health insurance system. Conclusion: The health insurance literacy of most international students at the midwestern university we surveyed is not ideal. This and possibly other universities in the United States should take more initiatives to help their international students understand the health insurance system.

"It's just not easy to understand": A mixed methods study of health insurance literacy and insurance plan decision-making in cancer survivors.

BACKGROUND: Understanding cancer survivors' health insurance decision-making is needed to improve insurance choice, potentially resulting in reduced financial hardship. METHODS: This explanatory mixed methods study assessed health insurance decision-making in cancer survivors. Health Insurance Literacy Measure (HILM) captured HIL. Quantitative eye-tracking data collected from two simulated health insurance plan choice sets gauged dwell time (seconds), or interest, in benefits. Dwell time differences by HIL were estimated using adjusted linear models. Qualitative interviews explored survivors' insurance decision-making choices. RESULTS: Cancer survivors (N = 80; 38% breast cancer) had a median age of 43 at diagnosis (IQR 34-52). When comparing traditional and high-deductible health plans, survivors were most interested in drug costs (median dwell time 58 s, IQR 34-109). When comparing health maintenance organization and preferred provider organization plans, survivors were most interested in test/imaging costs (40s, IQR 14-67). Survivors with low versus high HIL had more interest in deductible (ß = 19 s, 95% CI 2-38) and hospitalization costs (ß = 14 s, 95% CI 1-27) in adjusted models. Survivors with low versus high HIL more often ranked out-of-pocket (OOP) maximums and coinsurance as the most important and confusing benefits, respectively. Interviews (n = 20) revealed survivors felt alone "to do their own research" about insurance choices. OOP maximums were cited as the deciding factor since it is "how much money is going to be taken out of my pocket." Coinsurance was considered "rather than a benefit, it's a hindrance." CONCLUSION: Interventions to aid in health insurance understanding and choice are needed to optimize plan choice and potentially reduce cancer-related financial hardship.

Measuring health insurance literacy in the Netherlands - First results of the HILM-NL questionnaire.

BACKGROUND: There are several indications that citizens in the Netherlands struggle to make critical, well-considered decisions about which insurance policy best fits their needs and preferences. This can lead to citizens being sub-optimally insured, facing unexpected costs or suffering inadequate coverage. This study aims to examine how health insurance literacy (HIL) is distributed among citizens in the Netherlands; and to find out whether there are certain groups who have more difficulty choosing and using a health insurance policy. METHODS: We measured health insurance literacy using the HILM-NL questionnaire, the validated Dutch version of the original health insurance literacy measure (HILM). In February 2020, the HILM-NL was sent to 1,500 members of the Nivel Dutch Health Care Consumer Panel. The response rate was 54% (806). RESULTS: There is a wide variation in HIL among citizens in the Netherlands. The average total HILM-NL score is 55.14 (on a range of 21-84). The level of education and the household net income are significantly related to HIL. CONCLUSIONS: Citizens who completed less education or earn a lower income are relatively more likely to have difficulty choosing a health insurance policy or using policy benefits to pay for health services once enrolled. It is important to support these vulnerable groups properly in their choice and use of a health insurance policy.

Prevalence of Low Cost-Related Health Literacy Among Colorectal Cancer Survivors: Findings From the Kentucky Cancer Registry.

BACKGROUND: The lack of research on cost-related health literacy among colorectal cancer (CRC) survivors warrants further evaluation. OBJECTIVES: The objective of this study was to examine prevalence of low literacy (health, cancer, and insurance literacy), and numeracy and their association with sociodemographic factors in a group of Kentucky CRC survivors. METHODS: Based on data from the Kentucky Cancer Registry, this cross-sectional study evaluated survey results from January 2019 to November 2019 for the prevalence of low cost-related health literacy. FINDINGS: Overall, 104 participants had adequate health literacy (77%) and cancer health literacy (71%). However, fewer CRC survivors had high numeracy (16%) and confidence in choosing and using health insurance (18%). Thirty-one percent reported competence in their ability to select a health insurance plan and use it to access timely and appropriate healthcare services. Those with lower levels of education or those enrolled in a public health insurance plan were more likely to have lower health literacy, insurance literacy, and numeracy.

Health insurance literacy and health services access barriers in Niemann-Pick disease: the patient and caregiver voice.

BACKGROUND: Major challenges to health care access include low health insurance literacy, prohibitive costs, and insurance barriers. Niemann-Pick disease (NPD), comprising acid sphingomyelinase deficiency (ASMD) and Niemann-Pick type C (NPC), is a group of rare, autosomal recessive, highly heterogeneous, neurovisceral, life-threatening, relentlessly progressive lysosomal disorders. Patients experience debilitating systemic and neurological symptoms and substantial emotional and financial stress. Currently, these multifaceted disorders are managed symptomatically as there are no approved therapies. Given the considerable disease burden of NPD, timely access to quality health care is paramount for improving outcomes in these life-threatening disorders. Understanding health insurance literacy and access challenges among patients with NPD and their caregivers is a first step to overcoming treatment barriers. RESULTS: Patients from the Niemann-Pick community participated in a health insurance literacy survey and follow-up telephone interviews on perceived access challenges. Of the 79 respondents who completed the survey, 67 participated in interviews. All respondents had stable health insurance coverage. However, 61% of respondents were unaware of Medicaid waivers and did not avail of them. Overall, 50% of respondents with childhood onset NPC selected Medicaid/Medicare and private insurance; 35% utilized Medicaid waivers. Most respondents with ASMD had private insurance only. Although the Niemann-Pick community demonstrated greater health insurance literacy than the general population, knowledge gaps exist in calculating insurance coverage, out-of-pocket maximums, and defining a formulary. The most frequently cited access burden was the process of obtaining medical care and services. Among respondents with ASMD, the greatest access burden was fear of unavailability of or access to medications and treatment. Access challenges adversely impacted patients' mental health and exacerbated physical symptoms. Delays and denials in obtaining essential medication, equipment, and services contributed to disease progression. Caregivers faced burnout and often questioned the utility of their advocacy. CONCLUSIONS: This study identified knowledge gaps in health insurance literacy and challenges to access medication and health care services among individuals impacted by NPD. Patients and caregivers need the knowledge and skills to navigate a complicated health care system, understand their rights to medication and services and, ultimately, benefit from improved outcomes, especially in a post-drug approval era.