Multidimensional Care Poverty Among East Asian and Nordic Older Adults.

Background and Objectives: This study uses the care poverty framework, focusing on both individuals and structures. In this context, structures are represented by 2 welfare states: Taiwan, an East Asian welfare system and Finland, a Nordic welfare state. This study explores multidimensional care poverty rates and examines 3 realms of individual factors (health status, sociodemographic factors, and care support availability) among older adults in these long-term care (LTC) models. Research Design and Methods: We analyzed data from the 2019 Taiwan Longitudinal Study on Ageing Survey and the 2020 Daily Life and Care in Old Age Survey in Finland to compare the rates and factors of care poverty in these 2 culturally and structurally different countries. Results: Our analysis revealed different rates of care poverty in personal, practical, and socioemotional care needs in the 2 countries. Under a familistic welfare regime, Taiwanese older adults had higher personal care poverty rates than their Finnish counterparts. Those living alone faced more personal and practical care poverty. Conversely, Finnish older adults, under the Nordic welfare model, experienced more practical and socioemotional care poverty. Those with high care needs and disadvantaged social status and support were more likely to experience personal and practical care poverty. Socioemotional care poverty varied with the availability of support and health status in both countries. Discussion and Implications: The study highlights the impact of 2 LTC policies and cultures on older adults' multidimensional care poverty, identifying disadvantaged older adults under different welfare-transforming LTC models. Taiwan's budget-constrained LTC policies and high family reliance contrast with Finland's inadequate attention to the practical and socioemotional needs of its aging population. This study suggests that holistic LTC policies are needed in both countries to improve the well-being of older adults with limited support and health issues.

Constricting Gaps: Protocol development, implementation challenges and lessons learned for the reality map of unmet needs for Palliative Care Interventions in advanced cancer patients study in Romania and Switzerland.

Background: Patients with advanced cancer experience many symptoms and needs requiring a Palliative Care Intervention (PCI). Identifying gaps between needs for PCIs and experienced delivery may improve health care, furthermore the association of gaps with quality indicators (QI). The multicentre Romanian (RO)-Swiss (CH) reality map study implemented a novel protocol based on needs concepts and culturally adapted quality indicators (QI). Methods: An interactive mapping guide measuring unmet needs for PCIs monthly over six months, patient characteristics (cognition, EAPC basic data set, Cofactors) and QI (Inappropriate Anticancer Treatment, High Symptom Burden [IPOS, EQ5D], Repeated ER Admissions, Aggressive End-of-Life Care, and Quality of Death-and-Dying) were developed, applying swiss standards for quality assurance. A composite endpoint (QI, cofactors) was planned. Finally, local solutions responding to gaps were piloted. Results: From 308 patients (RO: 262, CH: 46, age 62j [mean], 74 % ECOG PS 1&2, 81 % current anticancer treatment) baseline and first follow-up data revealed main gaps (symptom management, spiritual needs, family support), country differences (e.g. illness understanding, spiritual needs) and a significant association of the number of gaps with depression. Later data become less, and data quality on QI variable, revealing gaps in research conduct competences, resources, and applicability of over-sophisticated quality assurance tools. Nevertheless, the unmet needs data promoted local initiatives, 81 patients participated in feasibility studies. Finally, the joint experience stimulated academic developments and national integration of palliative care into oncology. Conclusions: Pairing motivation and enthusiasm with more modest aims, feasibility testing of all outcomes and investment in research competences may disperse gaps.

Supportive Care Needs of Young Adults With Endometriosis: An Open-Ended Online Survey and Exploration of Unmet Needs.

OBJECTIVE: The aim of this study is to identify and explore the unmet needs of adolescents and young adults living with endometriosis. DESIGN: An open-ended online survey was conducted, with questions derived from prior research looking at areas of unmet need in healthcare, career and work, financial, information, psychological, social and cultural domains. SETTING AND POPULATION: Self-selecting 18-25 year olds with surgically diagnosed endometriosis (self-reported) currently living in Australia were included as participants. METHODS: Invitation to participate in an open-ended online survey was shared through the social media of Australian endometriosis organisations and the Royal Women's Hospital, Melbourne. Surveys were analysed qualitatively through template analysis. MAIN OUTCOME MEASURES: Recording of the unmet supportive care needs of this population was carried out. RESULTS: One hundred and thirty-one respondents fit the eligibility criteria of being aged 18-25 years (median age 23 years). Most were born in Australia (94%), university-educated (54%) and lived in a metropolitan setting (69%). There was a range of unmet needs that were presented across education, work, healthcare and relationships. Group-specific challenges were identified: doctors either over- or underemphasising future fertility; disrupted sexual and romantic life due to painful sex; managing pain in the classroom and workplace where periods are taboo; and being gender-queer in gynaecological medical spaces. CONCLUSIONS: The increasingly young age at which patients are receiving an endometriosis diagnosis precipitates a shift in patient care. The treatment decisions that are being made must be reflective of the unique needs of the adolescents who carry the burden of the disease. Clinicians are advised to be aware of and discuss needs with their patients. PATIENT OR PUBLIC CONTRIBUTION: The nine open-ended questions in this survey were developed from data from a preliminary series of interviews with endometriosis patients in a tertiary women's healthcare centre. In asking these data-informed questions to the online endometriosis community, patients across broader sociocultural demographics and disease states (including less symptomatic endometriosis) have provided a broader understanding of their supportive care needs.

Quality of Life in Children With Chronic Health Conditions and Its Contribution to Unmet Supportive Care Needs of Families.

BACKGROUND: While theoretical models have established the bidirectional relationship between health and wellbeing of parents and children with chronic health conditions (CHCs), previous work has predominantly emphasised the impact of parent functioning on child outcomes. This study examines how quality of life (QoL) domains in children with CHCs are associated with unmet supportive care needs (SCN) of their parents and explores whether these associations vary by health condition. METHOD: Parents of children with congenital heart disease (CHD), type 1 diabetes (T1D) and cancer diagnosed before the age of 12 years and receiving treatment within the last 5 years were eligible. Parents recruited through charity organisations and social media platforms completed a secure, online survey via Qualtrics. The PedsQL examined child QoL across four dimensions: physical, emotional, social and school functioning. A 34-item survey assessed parents' unmet SCN in the previous month across six need domains (e.g., care and informational). Linear regressions examined associations between child QoL and unmet SCN domains and moderation analyses determined whether associations varied as a function of CHC. RESULTS: The study included 186 parents (age range 25-56 years) of children diagnosed with various CHCs (52% CHD; 27% T1D, 21% cancer). The child's emotional functioning was inversely related to all unmet SCN domains, social functioning was inversely related to three domains (physical and social; support; financial), school functioning was inversely related to two domains (physical and social; care), and child's physical functioning was not associated with any SCN domains. Only the association between child school functioning and unmet care needs was significantly moderated by CHC type (p < 0.05). CONCLUSION: Poorer emotional functioning in children with a CHC is a key factor in determining parents unmet SCN. Larger studies are required to replicate these findings and inform design of interventions addressing QoL and unmet SCN in families of children with common CHCs.

The financial burden of noncommunicable diseases from out-of-pocket expenditure in sub-Saharan Africa: a scoping review.

The growing financial burden of noncommunicable diseases (NCDs) in sub-Saharan Africa (SSA) hinders the attainment of the sustainable development goals. However, there has been no updated synthesis of evidence in this regard. Therefore, our study summarizes the current evidence in the literature and identifies the gaps. We systematically search relevant databases (PubMed, Scopus, ProQuest) between 2015 and 2023, focusing on empirical studies on NCDs and their financial burden indicators, namely, catastrophic health expenditure (CHE), impoverishment, coping strategies, crowding-out effects and unmet needs for financial reasons (UNFRs) in SSA. We examined the distribution of the indicators, their magnitudes, methodological approaches and the depth of analysis. The 71 included studies mostly came from single-country (n = 64), facility-based (n = 52) research in low-income (n = 22), lower-middle-income (n = 47) and upper-middle-income (n = 10) countries in SSA. Approximately 50% of the countries lacked studies (n = 25), with 46% coming from West Africa. Cancer, cardiovascular disease (CVD) and diabetes were the most commonly studied NCDs, with cancer and CVD causing the most financial burden. The review revealed methodological deficiencies related to lack of depth, equity analysis and robustness. CHE was high (up to 95.2%) in lower-middle-income countries but low in low-income and upper-middle-income countries. UNFR was almost 100% in both low-income and lower-middle-income countries. The use of extreme coping strategies was most common in low-income countries. There are no studies on crowding-out effect and pandemic-related UNFR. This study underscores the importance of expanded research that refines the methodological estimation of the financial burden of NCDs in SSA for equity implications and policy recommendations.

Types and aspects of support that young carers need and value, and barriers and enablers to access: the REBIAS-YC qualitative study.

Background: Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. Providing care can negatively impact children and young people's education, employment, health and social participation, with associated costs. Support is needed to prevent and reduce these negative impacts. The study sought to provide new knowledge and address prior research gaps regarding how best to support young carers from their perspective and that of the people they care for. Objectives: To address the following questions: What types, components or features of services and other support are seen as helpful, valued, and acceptable to young people who look after someone at home and the people they support? Conversely, what is found to be less or unhelpful? What additional support is perceived as needed? What are the barriers experienced by young and young adult carers in seeking and accessing services for themselves or the person they support? What are the barriers and facilitators for practitioners in providing support and services perceived as valued, helpful and needed by young and young adult carers and the people they support? Design and setting: In-depth qualitative methodology using focus groups, in-depth semistructured interviews and workshops in four localities in England. Participants: One hundred and thirty-three carers aged 9-25 years with a range of caring and life circumstances and sociodemographic characteristics. Seventeen adult care recipients (parents) with a range of physical and/or mental healthcare and support needs. Nineteen practitioners from schools, colleges, young carers organisations, voluntary sector services, mental health services, the National Health Service, adult social care and local authority adult and children's social care commissioners. Results: The types and aspects of support that young carers and their families need, and value when received, include: support that reduces or removes their practical and emotional caring responsibilities; support to mitigate the negative impacts of care and help with other life issues; information and advice about services and wider resources and support; someone trusted available to talk to; greater awareness, recognition and understanding; and choice, flexibility, and co-development of plans and solutions. We found a great deal of unmet need for support, and variation in type and quality of support received, including geographically. Limitations: Potential limitations are that we were not able to engage with, or recruit, young carers from some intended subgroups, meaning some perspectives are missing. Partly because of COVID-19 measures during the study, we mainly recruited through young carers organisations and their family projects, although this was balanced by recruitment through schools and extensive outreach and engagement by the collaborating organisations prior to the project starting. Conclusions: Action is now needed to consistently and sustainably implement the types of support that young carers and the people they care for say they need and value. Future work: Future work should include more research from the perspectives of young carers and the people they care for, especially from particularly marginalised groups; and research to understand what works and how to improve implementation of the support needed and valued. Study registration: This study is registered as Current Controlled Trials ISRCTN13478876. https://doi.org/10.1186/ISRCTN13478876. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: NIHR129645) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 36. See the NIHR Funding and Awards website for further award information.

Many children and young people in England provide support to family members who are disabled, have mental or physical ill health, or misuse drugs or alcohol. They are sometimes called young or young adult carers. Providing care often brings satisfaction and a sense of pride but can also have negative effects on young people's lives. The study aimed to find out their views about what would best support them and the people they care for. The study asked two important questions: (1) What are the difficulties faced by young carers and the people they support in seeking, accessing and receiving the right type of support at the right times? (2) What services and support do they find helpful, what support would they like, and what needs would it meet? To answer these questions, we held group discussions (focus groups) and in-depth interviews with 133 young carers with a range of caring and life circumstances and 17 parents receiving help from a young carer. We also held workshops with 19 practitioners who are involved in identifying, supporting and funding services for young carers and their families. They told us that the types of support that they and their families need, and value when received, include: support for the people they care for, so they are providing less practical and emotional care support to help with any negative impacts of providing care and with other life issues information and advice about services, wider resources and support someone trusted to talk to greater awareness, recognition and understanding choice, flexibility and working together to develop plans and solutions We found a great deal of unmet need for support, and variation in the type and quality of support received, including across geographical areas. Action is now needed to consistently and sustainably implement the types of support that young carers and their families say they need and value.

The impact of unmet community service demand on the loneliness of older adults: based on CLHLS (2008-2018).

PURPOSE: To explore the impact of unmet community service demands on loneliness among older adults. METHODS: Based on the longitudinal tracking data of CLHLS (2008-2018), latent growth curve model (LGCM) was used to describe the trajectory of loneliness among older adults. Panel regression was used to analyze the impact of unmet community service demands on loneliness, and latent classification analysis (LCA) was used to classify the older adults and analyze the differences in loneliness among different types of older adults. RESULTS: A total of 1445 older people participated in all four surveys, and 22.4% of them reported feeling lonely. From 2008 to 2018, there was a significant non-linear increase in loneliness, with average values of 1.77, 1.81, 1.83, and 1.96, respectively. The level of community service supply (1.31) was far from meeting the demand level (5.11). Unmet community service demands were associated with a higher prevalence of loneliness (ß = 0.012, P = 0.003, 95% CI = [0.004, 0.020]). In addition, according to the demand difference for community services, older adults were classified into the comprehensive demand type (Type I) and the medical demand type (Type II). The loneliness of Type I older adults was significantly higher than that of Type II (P < 0.05). CONCLUSIONS: With the passage of time, loneliness of older adults is showing an accelerating upward trend. Unmet community services can lead to enhanced loneliness among older adults, and the higher the demand for community services, the stronger the loneliness. The government should increase the supply of community services to meet the basic and socio-emotional needs of the older adults to reduce loneliness.

Nursing care services to address unmet supportive care needs among cancer survivors: a systematic review.

BACKGROUND: The increasing population of cancer survivors poses a significant challenge for healthcare systems globally, necessitating comprehensive post-treatment care to address diverse physical, psychological, and social needs. OBJECTIVE: This systematic review aims to synthesize and critically evaluate the current evidence concerning the unmet needs for nursing services among cancer survivors, spanning various dimensions of survivorship care. METHODS: A systematic search was conducted across major databases, including PubMed, CINAHL, and PsycINFO, to identify relevant studies investigating the unmet needs and health-related quality-of-life (HRQOL) of nursing services led by nurses among cancer survivors. The final search update was conducted in June 2024. Unmet needs dimensions were categorized by the biopsychosocial-spiritual framework. RESULTS: Of the 9503 records searched, 18 studies were included. This review revealed mixed findings in the domains of unmet needs and interventions aimed at addressing them. While nurse-led interventions showed promise in addressing physical and daily living needs, outcomes related to psychological and emotional needs varied across studies. Additionally, nurse-led interventions were effective in addressing patient-clinician communication and health system/information needs, although statistical significance was not consistently observed. HRQOL assessments using general and cancer-specific measures yielded mixed findings. CONCLUSIONS: Despite limitations of the risk of bias of included studies and weak study designs for evaluating nurse-led intervention effects for cancer survivors, the findings highlight the potential of nursing practice to significantly contribute to improving unmet needs of physical, psychological, and social perspectives and ultimately improving their HRQOL. However, the impact on the spiritual needs of nursing care services is limited by the low number of studies. IMPLICATIONS FOR CANCER SURVIVORS: By providing comprehensive support and management, nursing practice can enhance post-treatment outcomes and HRQOL for cancer survivors, contributing to more patient-centered and effective care delivery. More rigorous research considering a biopsychosocial-spiritual perspective to help cancer survivors improve HRQOL is needed.

Emicizumab and unmet needs of patients with hemophilia a who are managed with replacement therapies.

INTRODUCTION: Hemophilia A is managed with coagulation clotting factor VIII (FVIII) therapy that poses significant challenges, such as a high treatment burden, immunogenicity, inconsistent hemostatic cover, poor treatment outcomes, and musculoskeletal progression despite adequate prophylactic treatment. Various non-factor therapies, such as several natural anticoagulant inhibitors and factor FVIII mimetics, have been developed to address these unmet needs. However, the role of emicizumab in addressing these unmet needs remains underexplored. AREAS COVERED: This review delves into the evolution of hemophilia A replacement clotting therapy from plasma-derived products to recombinant products and, more recently, nonfactor therapies. It underscores the unmet needs of replacement therapy and explores the nonfactor therapies developed to address them. The review then comprehensively summarizes the clinical trial and real-world experience data, demonstrating how emicizumab tackles these unsatisfied demands. EXPERT OPINION: Replacement clotting factor therapies as the standard of care has exposed several needs that have yet to be addressed. However, data from numerous emicizumab clinical trials and real-world experience offer a promising outlook, suggesting that it may effectively address many unmet needs. As hemophilia treatment goals continue to evolve, the role of currently developed nonfactor therapies in hemophilia management is yet to be fully defined.

Identifying and addressing the needs of caregivers of patients with cancer: evidence on interventions and the role of patient advocacy groups.

As the number of people with cancer increases, so does the number of informal caregivers. These caregivers frequently have multiple unmet needs and experience numerous burdens. Here we explore the crucial roles of these caregivers and categorize their unmet needs into four areas: information, relationship and communication, emotional support, and practical or financial needs. We provide evidence on emerging interventions aimed at supporting caregivers, including patient/caregiver assessments, education, collaborative care, financial assistance, wellness, informational programs, and an integrated caregiver clinic. Finally, we delve into the vital role that patient advocacy groups play in addressing the unmet needs of cancer patients and their caregivers by providing comprehensive support, including education, resources, counseling, guidance, and financial aid.

As the number of people living with cancer increases, the number of informal caregivers is also increasing. Most often, these caregivers are family members, friends, or spouses of the person with cancer. Caregivers of patients with cancer help with medical tasks and routine chores, like driving, and even personal care, such as bathing. Caregiving can be challenging, emotionally taxing, and time-consuming, all while being unpaid. In this review, we identify four unmet needs of caregivers of patients with cancer and examine how they are being addressed. First, caregivers need cancer care information that is presented in an understandable way. This will help the caregiver and the patient make better decisions about cancer care and treatment. Second, caregivers need better relationships and communication with the patient's clinicians. In addition, caregivers must also navigate, and sometimes mend, challenging relationships with the patients that they care for. Third, caregivers need more emotional support, including the option for counseling and therapy. Fourth, caregivers may need practical and financial support, particularly since the time demands and stress of caregiving can disrupt their ability to earn a living. Although many attempts have been made to address these caregiver needs, gaps still remain. Increasing awareness of information targeting caregivers and patients could reduce their uncertainty and help with decision-making. Even when resources are available, caregivers may not always be aware of or linked to them. Patient advocacy groups play a critical role in connecting caregivers with available resources. They also provide a variety of support services, including education, navigation, and financial assistance.

Assessing Competencies, Needs, and Satisfaction With the Transition From Pediatric to Adult Health Care in Rheumatology: Development and Validation of the Transition-KompAZ.

OBJECTIVE: The aim of this study was to develop and psychometrically validate a self-report instrument to assess (1) competencies, (2) needs, and (3) satisfaction among youth transitioning from pediatric to adult rheumatology. METHODS: The Transition-KompAZ was developed in several steps with conceptual and psychometric analyses. To test its psychometric properties, the instrument was administered to adolescents and young adults (AYAs; 16-25 years) with inflammatory rheumatic diseases before (group 1) or after (group 2) transfer to adult rheumatology. A 2-factor, higher-order confirmatory factor analysis (CFA) model was applied to test the hypothesized factor structure. Internal consistency was estimated using the approach of Raykov with the factor loadings and error variances estimated in the CFA. Spearman rank correlation coefficients were used to assess construct validity. RESULTS: The Transition-KompAZ includes the following modules: (1) competencies in transition (knowledge, self-management), (2) needs (healthcare services, information), and (3) satisfaction (general, transitional care). A total of 173 AYAs (group 1: n = 86; group 2: n = 87) from 12 rheumatology sites completed the Transition-KompAZ. It showed good model fit (comparative fit index > 0.9; Tucker-Lewis index > 0.9; weighted root mean square residual < 0.9) with good internal consistency. The instrument demonstrated moderate-to-good construct validity and good test-retest reliability. CONCLUSION: The Transition-KompAZ appears to be a reliable tool for assessing important dimensions of transition. It may support a structured and individualized transition, as well as the evaluation of transition services. However, further studies are required to assess its predictive value in terms of transfer readiness and successful transition.

Moral nexus of unmet needs and care in person-centred care for patients with advanced dementia in a multicultural society.

RATIONALE: Patients with advanced dementia experience multifaceted vulnerabilities because of their diminished capacities for decision making. The dominant versions of person-centred care (PCC) emphasise patient preferences and autonomy, which often undermines a recognition of their distinct unfulfilled needs. Determining whether an individual autonomy conception of personhood applies to patients with advanced dementia is morally problematic from various theoretical perspectives and leads to the one-approach-fits-all problem when caring for this patient population. AIMS AND OBJECTIVES: The availability of patients' advanced directives varies depending on their cultural backgrounds. The goal of the study is to argue that PCC, with a focus on relational autonomy, should be the first step for caring for patients with advanced dementia. METHOD: The study engages in a critical exploration of inclusivity and diversity in ethical thinking within a framework of PCC and uses philosophical argumentation to assess the viability of a relational autonomy conception of PCC. RESULTS AND CONCLUSION: By taking relationality seriously, especially in caring for patients with advanced dementia in a multicultural society, and by considering the moral nexus of unmet needs through the perspective of PCC, we can resolve the problem of one-approach-fits-all in dementia care.

A human centred innovative approach based on persona in hereditary angioedema.

BACKGROUND: Hereditary Angioedema (HAE) due to C1-inhibitor deficiency (C1INH) is a rare condition, clinically characterised by recurrent swelling. The unpredictability of attacks affects the patients' quality of life (QoL). HAE patients and their families have vast unmet physical, psychological, and social needs. A human-centred design (HCD) approach to describing the needs of different user types is to utilise personas, a data-driven narrative tool for communicating user archetypes that capture the individuals' attitudes, goals, and behaviours. The aim of this study was to create and analyse personas based on HAE patients' and their caregivers' interviews. Semi-structured interviews were conducted through anthropological conversations with patients, patient-caregivers (double role of patient and caregiver), and non-affected caregivers. Qualitative and quantitative insights from analyses formed the basis to create personas. RESULTS: We enrolled 17 subjects: 15 patients (6 of them were patient-caregivers) and 2 non-affected caregivers. The mean age of participants was 50.3 ± 14.4 years. Eight patients were on treatment with prophylactic therapy. The mean percentage score of Angioedema Quality of Life (AE-QoL) for HAE patients was 19.8 ± 12.0. Six personas were identified describing the participants' personal history, disease management, and needs: four personas referred to patients, one to patient-caregivers, and one non-affected caregiver personas were identified. Across patient personas, the most expressed needs were psychological support and better awareness amongst healthcare professionals. Caregivers, on their side, desired better information about the disease, including the latest therapies, and higher awareness within the community. CONCLUSION: A Human Centred Innovative Approach Based on Persona extends beyond the physical symptoms to encompass the psychological and social aspects of the individual's well-being also including the family in the evaluation.

Development and validation of the Unmet Needs Questionnaire for young stroke survivors.

OBJECTIVE: Owing to the lack of a suitable tool for detecting the unmet needs of young stroke survivors, this study aims to develop a validated questionnaire for evaluating these unmet needs. DESIGN: A cross-sectional, observational research design. SETTING: Chang Gung Memorial Hospital Linkou and Taoyuan branches in Taiwan. PARTICIPANTS: A total of 211 participants (average age 53 years; within 6 months post-stroke) completed the questionnaire. MAIN MEASURES: A qualitative approach was used to create an item pool. Experts verified item suitability, and content validity was evaluated using the item content validity index. Item analysis was applied to determine item quality, and factor analysis was used to explore construct validity. In addition, parallel analysis was employed to ascertain the optimal number of factors. RESULTS: The scale development procedure resulted in a 27-item questionnaire that assesses the unmet needs of young stroke survivors after a stroke. The item content validity index was 1.0. The Unmet Needs Questionnaire has five factors: restoring prestroke abilities and life, rehabilitation-related resources, social support and self-adjustment, economic and post-stroke life adjustment, and stroke-related information. These five factors accounted for 54% of the variance. Cronbach's alpha for the total scale was 0.91, while the alpha for the subscales ranged from 0.74 to 0.88. CONCLUSIONS: The Unmet Needs Questionnaire showed acceptable reliability and validity. It can help clinical professionals and government agencies identify stroke survivors' unmet needs and develop tailored care plans. Future research should explore the trajectory of post-stroke unmet needs using this tool.

The impact of health insurance on hypertension care: a household fixed effects study in India.

INTRODUCTION: Hypertension is highly prevalent in India, but the proportion of patients achieving blood pressure control remains low. Efforts have been made to expand health insurance coverage nationwide with the aim of improving overall healthcare access. It is critical to understand the role of health insurance coverage in improving hypertension care. METHODS: We used secondary data from the nationally representative sample of adults aged 15-49 years from the 2015-2016 National Family Health Survey (NFHS) in India. We defined the hypertension care cascade as four successive steps of (1) screened, (2) diagnosed, (3) treated, and (4) controlled, and operationalized these variables using blood pressure measurements and self-reports. We employed household fixed effect models that conceptually matched people with and without insurance within the household, to estimate the impact of insurance coverage on the likelihood of reaching each care cascade step, while controlling for a wide range of additional individual-level variables. RESULTS: In all 130,151 included individuals with hypertension, 20.4% reported having health insurance. For the insured hypertensive population, 79.8% (95% Confidence Interval: 79.3%-80.3%) were screened, 49.6% (49.0%-50.2%) diagnosed, 14.3% (13.9%-14.7%) treated, and 7.9% (7.6%-8.2%) controlled, marginally higher than the percentages for the uninsured 79.8% (79.5%-80.0%), 48.2% (47.9%-48.6%), 13.3% (13.1%-13.5%), and 7.5% (7.4%-7.7%) for each cascade step, respectively. From the household fixed effects model, health insurance did not show significant impact on the hypertension care cascade, with the estimated relative risks of health insurance 0.97 (0.93-1.02), 0.97 (0.91-1.03), 0.95 (0.77-1.30), and 0.97 (0.65-1.10) for each cascade step, respectively. We further performed stratified analyses by sociodemographic and behavioral risk factors and a sensitivity analysis with district fixed effects, all of which yielded results that confirmed the robustness of our main findings. CONCLUSIONS: Health insurance did not show significant impact on improving hypertension care cascade among young and middle-aged adults with hypertension in India. Innovative strategies for overcoming practical barriers to healthcare services in addition to improving financial access are needed to address the large unmet need for hypertension care.

Association of Gaps in Medical Insurance Coverage with Vision Care Benefits Among US Adults.

BACKGROUND: In the US, routine vision care and medical services are often covered by separate insurance plans. Unmet needs for vision care are more common among adults with gaps in medical coverage, but it is unclear how gaps in medical coverage correlate with lack of vision benefits among currently insured adults. We hypothesized that gaps in medical coverage in the past 12 months would be associated with lack of coverage for vision care among US adults currently covered by commercial medical insurance. METHODS: We included adults age 18-65 with private insurance who participated in the 2019-2022 National Health Interview Survey. The primary outcome was any coverage for vision care services, and the secondary outcome was a source of vision coverage (primary health insurance policy as compared to single-service plans only). RESULTS: Based on a sample of 50,000 participants, we estimated 4% of commercially insured adults recently experienced coverage gaps, and 75% had coverage for vision care services. On multivariable analysis, commercially insured adults with recent gaps in medical coverage were more likely to lack coverage for vision care at the time of the survey, compared to adults with continuous medical coverage (odds ratio [OR], 0.77; 95% CI: 0.68, 0.86). However, medical coverage gaps were not associated with source of vision care coverage. CONCLUSIONS: Gaps in medical insurance coverage were associated with lower likelihood of vision care coverage compared to continuous medical coverage. Protecting continuity of health insurance may support access to vision benefits and reduce gaps in routine vision care.

Unmet needs for long-term services and supports and associations with health outcomes.

BACKGROUND: The availability of population-level data on unmet needs for long-term services and supports (LTSS) is limited at state and national levels. Data on unmet LTSS needs can improve our understanding of disparities and relationships with health outcomes. OBJECTIVE: 1) Explore differences in unmet LTSS needs by socio-demographic characteristics, including age, sex, race/ethnicity, metropolitan status, sexual orientation, and socio-economic status; and 2) Examine associations between unmet LTSS needs and health/preventative healthcare outcomes. METHODS: We used the 2021 Behavioral Risk Factor Surveillance System (BRFSS) core survey and state-added LTSS questions to analyze a sample of adults with LTSS needs in Texas (N = 1232). We compared socio-demographic characteristics between adults with and without unmet LTSS needs. We conducted modified-Poisson regressions to estimate unadjusted and adjusted risk ratios (with 95 % confidence intervals) for each health/preventative healthcare outcome among adults with unmet LTSS needs. Health outcomes included health status, healthy days-physical health, healthy days-mental health, suicide ideation, and multiple chronic conditions. Preventative healthcare outcomes included routine check-up and flu vaccine. RESULTS: Among adults with LTSS needs, those with unmet LTSS needs were statistically significantly more likely to be younger (age<65), female, higher educational attainment, and non-straight sexual orientation. After controlling for socio-demographic variables, having unmet needs for LTSS was significantly associated with poorer physical and mental health outcomes and suicide ideation. CONCLUSIONS: Improved data collection on unmet needs LTSS can assist policymakers, particularly at the state level in guiding reforms to reduce disparities in access to home and community-based services (HCBS) and improve health outcomes.

Characterizing barriers to care in migraine: multicountry results from the Chronic Migraine Epidemiology and Outcomes - International (CaMEO-I) study.

OBJECTIVE: To assess rates of traversing barriers to care to access optimal clinical outcomes in people with migraine internationally. BACKGROUND: People in need of medical care for migraine should consult a health care professional knowledgeable in migraine management, obtain an accurate diagnosis, and receive an individualized treatment plan, which includes scientific society guideline-recommended treatments where appropriate. METHODS: The Chronic Migraine Epidemiology and Outcomes-International (CaMEO-I) Study was a cross-sectional, web-based survey conducted from July 2021 through March 2022 in Canada, France, Germany, Japan, the United Kingdom, and the United States (US). Respondents who met modified International Classification of Headache Disorders, 3rd edition, criteria for migraine and had Migraine Disability Assessment Scale (MIDAS) scores of ≥ 6 (i.e., mild, moderate, or severe disability) were deemed to need medical care and were included in this analysis. Minimally effective treatment required that participants were currently consulting a health care professional for headache (barrier 1), reported an accurate diagnosis (barrier 2), and reported use of minimally appropriate pharmacologic treatment (barrier 3; based on American Headache Society 2021 Consensus Statement recommendations). Proportions of respondents who successfully traversed each barrier were calculated, and chi-square tests were used to assess overall difference among countries. RESULTS: Among 14,492 respondents with migraine, 8,330 had MIDAS scores of ≥ 6, were deemed in need of medical care, and were included in this analysis. Current headache consultation was reported by 35.1% (2926/8330) of respondents. Compared with the US, consultation rates and diagnosis rates were statistically significantly lower in all other countries except France where they were statistically significantly higher. Total appropriate treatment rates were also statistically significantly lower in all other countries compared with the US except France, which did not differ from the US. All 3 barriers were traversed by only 11.5% (955/8330) of respondents, with differences among countries (P < 0.001). CONCLUSIONS: Of people with migraine in need of medical care for migraine, less than 15% traverse all 3 barriers to care. Although rates of consultation, diagnosis, and treatment differed among countries, improvements are needed in all countries studied to reduce the global burden of migraine. TRIAL REGISTRATION: NA.

Key steps and barriers in the journey of patients with epilepsy through the National Healthcare System in Spain: The EPIPASS qualitative study.

OBJECTIVE: Epilepsy requires continuous medical attention from multiple healthcare specialists, specialized facilities, and community-based care. In Spain, there is no standardized approach to epilepsy care. The aim of this study was to identify the factors impacting on the delivery of high-quality care by exploring key steps and barriers along the patient journey through the Spanish National Healthcare System (NHS). METHODS: A qualitative study was conducted using opinions and experiences of neurologists, nurses, patients, and caregivers shared in discussion meetings. Using thematic content analyses, relevant aim-focused statements were coded according to prespecified issues in a discussion map (i.e., key steps and barriers), and sub-coded according to emerging issues. Thematic saturation and co-occurrence of key steps/barriers were evaluated to identify the most relevant factors impacting on the delivery of high-quality care. RESULTS: Sixty-five stakeholders took part in discussion meetings (36 neurologists, 10 nurses, 10 patients, and nine caregivers). Six key steps on the patient journey were identified: emergency care, diagnosis, drug therapy, follow-up, referral, and interventional treatment. Of these, follow-up was the most relevant step impacting on the delivery of high-quality patient care, followed by drug therapy and diagnosis. Emergency care was considered a hot-spot step with impact throughout the patient journey. Communication (among HCPs and between HCPs and patients) was a barrier to the delivery of high-quality care at several stages of the patient journey, including drug therapy, follow-up, referral, and interventional treatment. Resource availability was a barrier for diagnosis (especially for confirmation), drug therapy (drug availability), and referral (lack of professionals and specialized centers, and long waiting lists). SIGNIFICANCE: This is the first study capturing perspectives of four key stakeholders involved in epilepsy care in Spain. We provide an overview of the patient journey through the Spanish NHS and highlight opportunities to improve the delivery of patient-centered care with a chronicity perspective. PLAIN LANGUAGE SUMMARY: Patients with epilepsy may require prolonged medical care. In Spain, care is provided by a range of specialist and non-specialist centers. In this study, a team of Spanish neurologists, nurses, patients and caregivers identified barriers that affect the delivery of high-quality care for patients with epilepsy at each stage of their journey through the Spanish NHS. Specific epilepsy training for healthcare providers, appropriate resources for diagnosing and treating patients, and good communication between healthcare workers and patients were identified as important factors in providing high-quality care for patients with epilepsy.

Unmet supportive care needs of patients with colorectal cancer based on survival stage: A scoping review.

BACKGROUND: Colorectal cancer (CRC) has emerged as one of the most common cancers, with increasing survival rates globally. As patients with CRC experience diverse treatment effects corresponding to different survival stages, understanding their unmet needs based on the survival stage is critical to tailor supportive care with limited medical resources. AIM: This study aimed to understand the unmet needs of patients with CRC across survival stages. METHODS: This scoping review followed the 5-stage framework established by Arksey and O'Malley. Five online databases were searched with narrative synthesis performed after data extraction. RESULTS: Fifteen studies were identified for this review, with 12 focusing on the acute survival stage and three reporting on the extended survival stage. Ten studies used validated scales to assess unmet needs, with the Supportive Care Needs Survey being the most common scale. Unmet needs in patients with CRC demonstrate distinct patterns across survival stages. Most studies reported a higher prevalence of unmet needs during the extended survival stage compared to the acute survival stage. Unmet emotional needs predominate during the acute survival stage, whereas unmet physical needs become most prominent in the extended survival stage. LINKING EVIDENCE TO ACTION: Healthcare providers are encouraged to conduct assessments tailored to the specific survival stage, with particular emphasis on addressing unmet needs during the extended survival stage. The development of standardized scales is recommended to comprehensively assess the unmet needs of patients with CRC.