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(1) Background: A significant proportion of cancer survivors report experiencing a cognitive fog that affects their ability to think coherently and quickly, and reason with clarity. This has been referred to as cancer-related cognitive impairment (CRCI). CRCI has extensive impacts on the daily lives of people living with or beyond cancer, including occupational, social, and psychological functioning. Oncology health professionals report feeling under-resourced to effectively assess the needs of an individual with CRCI and then provide optimal care and referral. (2) Methods: The objective of this project is to develop and provide an initial validation of the first purpose-built unmet needs assessment for CRCI: the Unmet Needs Assessment of Cancer-Related Cognitive Impairment Impact (COG-IMPACT). We will use a multiple-stage, co-design, mixed-methods approach to develop and provide an initial validation of the COG-IMPACT. (3) Results: The primary anticipated result of this research is the production of the COG-IMPACT, the first purpose-built unmet needs assessment for CRCI. The assessment could be used by health professionals to understand the unmet needs and facilitate optimal care and referral for cancer survivors, by survivors to elucidate their supportive needs and advocate for their care, and by researchers to examine the correlates of unmet needs relating to CRCI, as well as how best to support people with CRCI.

This article examines the opportunities and benefits of artificial intelligence (AI)–enabled social media listening (SML) in assisting successful patient-focused drug development (PFDD). PFDD aims to incorporate the patient perspective to improve the quality, relevance, safety, and efficiency of drug development and evaluation. Gathering patient perspectives to support PFDD is aided by the participation of patient groups in communicating their treatment experiences, needs, preferences, and priorities through online platforms. SML is a method of gathering feedback directly from patients; however, distilling the quantity of data into actionable insights is challenging. AI–enabled methods, such as natural language processing (NLP), can facilitate data processing from SML studies. Herein, we describe a novel, trainable, AI-enabled, SML workflow that classifies posts made by patients or caregivers and uses NLP to provide data on their experiences. Our approach is an iterative process that balances human expert–led milestones and AI-enabled processes to support data preprocessing, patient and caregiver classification, and NLP methods to produce qualitative data. We explored the applicability of this workflow in 2 studies: 1 in patients with head and neck cancers and another in patients with esophageal cancer. Continuous refinement of AI-enabled algorithms was essential for collecting accurate and valuable results. This approach and workflow contribute to the establishment of well-defined standards of SML studies and advance the methodologic quality and rigor of researchers contributing to, conducting, and evaluating SML studies in a PFDD context. [ABSTRACT FROM AUTHOR]

Background: As cancer patients approach the end of life, their needs become more complex, increasing the demand for palliative care. Advanced-stage cancer patients encounter increasing unmet psychological, physical, autonomy, and communication needs, reflecting the difference between patients' perceived requirements and the support from health care professionals. The objective of this study was to synthesize qualitative evidence on unmet needs in palliative cancer care among inpatient and outpatient adults. Methods: We conducted a meta-ethnographic review according to Noblit and Hare's framework and the operationalized guidelines developed by Sattar. The eMERGe Reporting Guidance was followed. A literature search was conducted in Cinahl, Embase, Medline, Scopus, Web of Science, PsycINFO and Google Scholar for gray literature. For all the studies, direct quotes from the participants and authors' results were identified, coded and analyzed in NVivo 1.7.1 and extracted as I and II order constructs from which higher third-order themes originated. Results: Eight studies were included. Four new themes emerged, representing areas where palliative cancer care patients expressed a need for help: the need for comprehensive, patient-centered care, the need for maintaining a sense of autonomy and dignity, the need for attentive support to patients' soul and the need for accessible and timely care. Conclusions: Palliative care patients require a secure, suffering-free end-of-life journey with informed decision-making and team support. Ensuring continuity of care, validating their suffering, and allocating sufficient time are crucial aspects of care. This involves maintaining a consistent care plan, respecting patients' emotions and experiences, and providing services tailored to individual needs. [ABSTRACT FROM AUTHOR]

Purpose: To synthesize published studies regarding Japanese cancer survivors' needs/unmet needs of care/support, change of unmet needs over time, and preferred care/support providers. Methods: A mixed-method systematic review was conducted. MEDLINE, PsycINFO, CINAHL, and Ichu-shi were searched from inception to May 2022. Quantitative and qualitative studies were separately analyzed using narrative synthesis and meta-ethnography. Each finding was synthesized using a line of argument. Results: Twenty-four studies (13 quantitative and 11 qualitative studies) were included. Six quantitative studies reported unmet needs in survivors of adolescent and young adult (n=1) and adulthood (n=5) cancer. No longitudinal studies regarding changes in unmet needs were identified. One study reported that adults preferred care/support providers. The quantitative studies identified more help in physical (48.2–51.0%, n=2) and psychological issues (17.4–78.8%, n=5), information (27.9–58.0%, n=3), and healthcare services (25.3–67.1%, n=2) among adults. The qualitative studies emphasized more tailor-made information about life events for young cancer survivors. More empathic and trustworthy interactions with surrounding people, including healthcare professionals, were demanded, regardless of age. A line of argument illustrated that cancer survivors had insufficient resources for activities and empowerment to face life with cancer at all phases. Conclusions: Japanese cancer survivors' unmet needs are diverse. More information and resources for psychological care/support and local healthcare services post-treatment are needed, which may hinder the optimal transition to survivorship. Implications for Cancer Survivors: The synthesized evidence should be utilized to implement a comprehensive care/support system in practice and educate people surrounding cancer survivors, regardless of age. [ABSTRACT FROM AUTHOR]

AbstractBackgroundMethodsResultsConclusionsModerate-to-severe atopic dermatitis (AD) significantly impacts quality of life. Advanced systemic therapeutics (AST) represent a new generation of medications targeting AD pathogenesis, but many who may benefit from these medications are AST-naïve. We compared patients in the United States who had started AST with those who had not started AST to evaluate associated characteristics.TARGET-DERM AD, (NCT03661866, “A Longitudinal Observational Study of Patients Undergoing Therapy for IMISC (TARGET-DERM)” launched in 2019, is an ongoing, longitudinal, observational study of patients managed at 37 United States sites. Patients were aged 12 years and above, had moderate-to-severe AD based on validated Investigator Global Assessment (vIGA) at enrollment, at least one follow-up visit post-enrollment, and treatment with any of the following: a topical/systemic corticosteroid, immunomodulator, or phototherapy. AST included dupilumab and upadacitinib. Variables of interest gathered at enrollment included demographics, vIGA and Body Surface Area (BSA), patient-reported outcomes, and all recorded therapeutics.Of 3,076 patients, 436 qualified for inclusion, 52 were AST-treated adolescents and 141 AST-treated adults. Both groups had increased likelihood of AST initiation if they had private insurance and higher BSA, vIGAxBSA, or Patient-Oriented SCORing Atopic Dermatitis scores. Adults were more likely to start AST based on minority/ethnicity, more severe vIGA, higher patient-reported outcomes, or if treated at a community clinic. Substantial numbers of adolescent and adult patients (47 and 58%, respectively) with severe disease were AST-naïve.Disease severity and patient access to AST are major factors driving AST initiation. However, some patients are undertreated. This analysis supports AD patient advocacy for those inadequately managed with conventional therapies. Further investigations are necessary to delineate AST initiation barriers and relevant outcomes. [ABSTRACT FROM AUTHOR]

This review examines the critical unmet needs for pre-exposure prophylaxis (PrEP) among female sexual workers in Tanzania, highlighting key barriers to uptake and key actions for improvement. Key findings reveal that lack of awareness and knowledge, stigma and discrimination, and accessibility and affordability challenges hinder PrEP utilization. Perspectives from both female sex workers and healthcare providers reveal complex individual, community, and systemic factors contributing to the persistent gap in PrEP utilization. Addressing the unmet PrEP needs requires a multi-faceted approach involving improving awareness and knowledge, tackling stigma and discrimination, enhancing affordability and accessibility, and strengthening healthcare provider capacity. The implications of addressing these challenges extend to reducing HIV transmission rates and advancing the goal of ending the AIDS epidemic among marginalized populations in Tanzania. [ABSTRACT FROM AUTHOR]

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. Plain Language Summary 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. Article highlights Caregivers play a critical role in cancer care Informal caregivers provide unpaid, ongoing care or assistance to a patient with cancer. Caregiver burden & unmet needs Most caregivers of patients with cancer are overburdened. The unmet needs of caregivers can be divided into four categories: informational, relationship/communication, emotional, and practical/financial. Informational There is a need for "objective" and "trusted" medical information and advice about the patient's condition and treatment plan written in plain language. Caregivers may need information to assist patients in decision-making about care and treatment options. Relationship/communication Caregivers often face challenging relationships with the patients they care for, who are often family members and/or they struggle with complex extended family dynamics. There may be barriers that prevent open communication between caregivers and the patient's clinicians. Although telehealth provides benefits to patients and caregivers, there are barriers that prevent access. Emotional Nearly half of caregivers struggle with depression and anxiety. Caregivers are often challenged by mental healthcare needs, which are not covered by the same insurance plans that cover the patient's medical care. Practical/financial Caregiving can often amount to a full-time job. The considerable commitment required to care for a cancer patient can have a significant practical and financial impact, potentially affecting the caregiver's employment and their family/home needs. Evidence on interventions to support caregivers: a work in progress Caregiver assessments during patient medical visits are feasible and beneficial. Programs designed to provide information and education to patients and caregivers reduce uncertainty and assist in decision-making. Collaborative care consisting of a team-based approach with an oncologist, care manager, and mental health professional who collaborate to enhance psychosocial outcomes is effective in reducing depression and improving quality of life for patients and caregivers. Massage and mindfulness training may reduce the physical and emotional stress and suffering of caregivers. An innovative caregiver clinic based in Toronto, Canada, takes an integrated approach and provides psychosocial support to caregivers, much like patients receive. A call to action: how patient advocacy groups can help in the caregiving process Importantly, patient advocacy groups fill many gaps that may not otherwise be addressed by other interventions due to access and availability barriers. They play critical roles in supporting patients and their caregivers by providing resources including education, information, counseling, navigation, and financial assistance. They also engage in policy and legislative advocacy efforts on behalf of patients with cancer and their caregivers. [ABSTRACT FROM AUTHOR]

Background: Medication adherence is essential for the achievement of therapeutic goals. Yet, the World Health Organization estimates that 50% of patients are nonadherent to medication and this has been associated with 125 billion euros and 200,000 deaths in Europe annually. Objective: This study aimed to unravel barriers and unmet training needs regarding medication adherence management across Europe. Design: A cross-sectional study was conducted through an online survey. The final survey contained 19 close-ended questions. Participants: The survey content was informed by 140 global medication adherence experts from clinical, academic, governmental, and patient associations. The final survey targeted healthcare professionals (HCPs) across 39 European countries. Main Measures: Our measures were barriers and unmet training needs for the management of medication adherence across Europe. Key Results: In total, 2875 HCPs (pharmacists, 40%; physicians, 37%; nurses, 17%) from 37 countries participated. The largest barriers to adequate medication adherence management were lack of patient awareness (66%), lack of HCP time (44%), lack of electronic solutions (e.g., access to integrated databases and uniformity of data available) (42%), and lack of collaboration and communication between HCPs (41%). Almost all HCPs pointed out the need for educational training on medication adherence management. Conclusions: These findings highlight the importance of addressing medication adherence barriers at different levels, from patient awareness to health system technology and to fostering collaboration between HCPs. To optimize patient and economic outcomes from prescribed medication, prerequisites include adequate HCP training as well as further development of digital solutions and shared health data infrastructures across Europe. [ABSTRACT FROM AUTHOR]

Background: Allocating healthcare resources to local areas in proportion to need is an important element of many universal health care systems, aiming to provide equal access for equal need. The UK National Health Service allocates resources to relatively large areas in proportion to need, using needs-weighted capitation formulae. However, within those planning areas, local providers and commissioners also require robust methods for allocating resources to neighbourhoods in proportion to need to ensure equitable access. We therefore developed a local resource allocation formula for NHS district nursing services for a City in the North West of England, demonstrating a novel application of the national formulae principles for equitable resource allocation to small areas. Methods: Using linked data from community health services, primary care, secondary care and social care, we used a zero-inflated Poisson regression to model the number of district nursing services contacts for each individual based on predictors of need, while including the supply of district nurses per head to account for historical supply induced patterns. Individual need was estimated based on the predictions from this model, keeping supply fixed at the average. We then compared the distribution of district nurses between neighbourhoods, based on our formula, to the current service staffing distribution. Results: Key predictors of need for district nursing services were age, deprivation, chronic diseases such as, cardiovascular disease, chronic liver disease, neurological disease, mental ill health, learning disability living in a nursing home, living alone, and receiving palliative care. Need for district nursing services was highly weighted towards older and more deprived populations. The current distribution of staff was, however, more correlated with age than deprivation. Moving to a needs-based staffing distribution would shift staff from less deprived areas to more deprived areas potentially reducing inequalities. Conclusion: A neighbourhood-level model for needs for district nursing is a useful tool that can potentially improve the allocation of resources, addressing unmet need and inequalities. [ABSTRACT FROM AUTHOR]

Background: The lack of adequate access to and use of sexual and reproductive health care by youth and adolescent, n low- and middle-income countries persists despite international accords on their rights, which exposes them to violence against children; early and unintended pregnancies; and sexually transmitted infections. This study examined functional sexual and reproductive health and right-based friendly services as perceived by exit male and female adolescents, caregivers, and health workers at the Tanzanian health services delivery points as they were the ones who would share their opinions to establish a diversified and representative reality about the matter based on sex. Methods: This was a multicentric study among 205 randomly selected participants in eleven selected health facilities within the three regions of Tanzania including Dar es Salaam, Dodoma, and Kigoma regions using a one-time descriptive cross-sectional design with a quantitative research approach from 01 to 30 November 2022. Triangulation technique of data collection activities using structured questionnaires and observation checklist adopted from the Tanzanian Ministry of Health was used to collect data. IBM Statistical Package for Social Sciences version 26 data entry templates (Sa PSS – 26) were used to analyze data descriptively to establish frequencies and percentages. Results: Results indicated that 205 participants were assessed in this study with a response rate of 100%. Exit adolescents (46%); health workers in dispensaries (60%), and community members (42%) were more likely to confirm the availability of functional SRH right-based adolescent and youth-friendly services at the health services delivery points. The SRH displays (50%); adolescent rights (6%) and confidentiality (5%) were the least reported functional SRH aspects by the study participants. It was noted that the 11 health services delivery points in their totality did not fully implement the National standards in providing the services to adolescents and youth of which standards III (54.0%) and VIII (46.1%) scored the lowest. Conclusion: The results of this study have uncovered that there is disperities in the availability and accessibility of functional SRH right-based adolescent and youth-friendly services across the levels of health facilities; among adolescents and community members. Hospitals were more likely to confirm the availability of Functional Right Based Youth Friendly Services than at health centers and dispensaries with female adolescents, youth, and community members being disadvantaged. There is a need to address issues of differentials in equity to the accessibility of services among adolescents, youth, and community members by improving functional sexual and reproductive health and right-based friendly services provision infrastructures, health care workers capacity building, and mechanisms or approaches to increase adolescents' access and uptake to SRHR services. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Aging Veterans face complex needs across multiple domains. However, the needs of older female Veterans and the degree to which unmet needs differ by sex are unknown. We analyzed responses to the HERO CARE survey from 7,955 Veterans aged 55 years and older (weighted N = 490,148), 93.9% males and 6.1% females. We evaluated needs and unmet needs across the following domains: activities of daily living (ADLs), instrumental ADLs (IADLs), health management, and social. We calculated weighted estimates and compared sex differences using age-adjusted prevalence ratios. On average, female Veterans were younger, more were Non-Hispanic Black and unmarried. Females and males reported a similar prevalence of problems across all domains. However, compared to males, female Veterans had a lesser prevalence of missed appointments due to transportation (aPR 0.49; 95% CI: 0.26–0.92), housework unmet needs (aPR: 0.44; 95% CI: 0.20–0.97), and medication management unmet needs (aPR: 0.33; 95% CI: 0.11–0.95) but a higher prevalence of healthcare communication unmet needs (aPR: 2.40; 95% CI: 1.13–5.05) and monitoring health conditions unmet needs (aPR: 2.13, 95% CI: 1.08–4.20). Female Veterans' common experience of unmet needs in communicating with their healthcare teams could result in care that is less aligned with their preferences or needs. As the number of older female Veterans grows, these data and additional work to understand sex-specific unmet needs and ways to address them are essential to providing high-quality care for female Veterans. [ABSTRACT FROM AUTHOR]

Simple Summary: This study assessed the supportive care services offered to breast cancer (BC) patients in Palestinian government hospitals and identified characteristics related to unmet needs. We performed a cross-sectional study involving 362 women, utilizing the Supportive Care Needs Survey (SCNS-SF34) through face-to-face questionnaires, and gathered data on sociodemographic, clinical, and social support variables. The findings indicated that 61% of participants encountered unmet supportive care needs, especially in the areas of health system and information (93.6%), physical and daily living (89.8%), and psychological support (75.1%). Elevated unmet needs are associated with variables like age, marital status, illness duration, analgesic usage, cancer treatments, family cancer history, and social support. This research highlights the urgent need to enhance supportive care services of the health system and information, physical and daily living, and psychological support, to elevate the quality of life for BC patients in Palestine. Background: Breast cancer (BC) is the most common cancer among women in Palestine, where the need for supportive care frequently goes unmet. Therefore, this study aims to assess the supportive care services provided at the governmental hospitals in the southern area of the West Bank and to determine the factors associated with the unmet needs of these services. Methods: A cross-sectional study was conducted on 362 women with BC. Data were collected using a face-to-face questionnaire that included the Supportive Care Needs Survey (SCNS-SF34), patients' sociodemographic, economic, and clinical characteristics, as well as familial history of cancer and social support. Results: The study revealed that 61% of participants had unmet supportive care needs, with health system information, physical support, and psychological support being the most unmet needs. Factors contributing to unmet needs included age, marital status, familial support, and a family history of cancer. Chemotherapy and surgery increased the probability of physical care needs by fivefold, while hormone therapy reduced the probability of psychological needs (AOR = 0.36, p < 0.001) and patient care and support needs (AOR = 0.49, p = 0.01). Additionally, radiotherapy reduced sexual care needs by 58% and biological therapy by 60%. Conclusions: There is an urgent need for enhanced supportive care services for BC patients in the West Bank, especially regarding health system information, physical care, and psychological support. Addressing these needs through targeted interventions could significantly improve patients' quality of life. [ABSTRACT FROM AUTHOR]

Background: Raising a child with hydrocephalus can be very challenging, especially in low- and middle-income countries. In Pakistan, mothers being the primary caregivers for their hydrocephalic children are under tremendous stress. Methods: This study explores the challenges faced by Pakistani mothers raising children with hydrocephalus, employing a qualitative methodology through focus group discussions comprising ten mothers of hydrocephalic babies at Tertiary Care Hospital in Pakistan. Results: The findings highlight three main themes: emotional toll, social isolation, and financial strain. Mothers experience significant emotional stress due to societal stigma and a lack of support, particularly from their husbands and family. Social isolation is prevalent, as mothers fear sharing their burdens and face physical confinement due to their children's needs. Financial strain is another major issue, with high medical costs adding to their economic difficulties. Conclusion: The study emphasizes improved access to specialized care, awareness campaigns to reduce stigma, financial assistance, and stronger community support networks to support these mothers better. Addressing these unmet needs is crucial for empowering Pakistani mothers in their caregiving roles and improving the quality of life for their children with hydrocephalus. [ABSTRACT FROM AUTHOR]

This study is original in that it assesses various types of care needs, barriers to care, and factors associated with higher unmet needs among 308 permanent supportive housing (PSH) residents in Quebec (Canada). Data from structured interviews that featured the Perceived Need for Care Questionnaire were collected from 2020 to 2022, controlling for the COVID-19 pandemic period. Eight types of care (e.g., information, counseling) were accounted for. Based on the Behavioral Model for Vulnerable Populations, predisposing, need, and enabling factors associated with higher unmet care needs were assessed using a negative binomial regression model. The study found that 56% of adult PSH residents, even those who had lived in PSH for 5 + years, had unmet care needs. Twice as many unmet needs were due to structural (e.g., care access) rather than motivational barriers. Living in single-site PSH, in healthier neighborhoods, having better quality of life and self-esteem, and being more satisfied with housing and outpatient care were associated with fewer unmet care needs. PSH residents with co-occurring mental disorders (MD) and substance use disorders (SUD), and with moderate or severe psychological distress were likely to have more unmet needs. Better access to care, counseling and integrated treatment for co-occurring MD-SUD might be improved, as well as access to information on user rights, health and available support. Welfare benefits could be increased, with more peer support and meaningful activities, especially in single-site PSH. The quality of the neighborhoods where PSH are located might also be better monitored. [ABSTRACT FROM AUTHOR]

AbstractPurposeMaterials and MethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONThis study aimed to translate, adapt, and test the psychometric properties of the Longer-term Unmet Needs after Stroke (LUNS) monitoring tool for Chinese stroke patients.The LUNS monitoring tool was translated and cross-culturally adapted using the Functional Assessment of Chronic Illness Therapy translation methodology and two rounds of expert consultation. A cross-sectional study was conducted to test the validity and reliability of the Chinese version of the tool from April to October 2023 in Xi’an.The Chinese version of the LUNS monitoring tool had a Cronbach’s alpha value of 0.702 and the ICC was 0.732 (p < 0.001). The I-CVIs were above 0.90 and the S-CVI/Ave was 0.983. The factor analysis extracted eight factors, collectively accounting for 66.283% of the data variance. The correlation coefficient between the LUNS and WSO needs assessment questionnaire was 0.105 (p = 0.019).The study confirmed good reliability and validity of the Chinese version of the LUNS monitoring tool in measuring the prevalence and level of unmet need in stroke patients. It will help identify the unmet needs of stroke patients, and to guide rehabilitation service response during individual patient consultations, facilitate service development, and inform commissioning decisions.StrokeStroke patients often suffer from physical, psychological and social disabilities, leading to significant challenges and a spectrum of unmet needs.Assessing patients’ unmet needs is crucial for their recovery.The Chinese version of the Longer-term Unmet Needs after Stroke monitoring tool has good reliability and validity.This tool will help identify the unmet needs of stroke patients, enabling healthcare professionals to provide more tailored interventions and ultimately improve patients’ recovery.Stroke patients often suffer from physical, psychological and social disabilities, leading to significant challenges and a spectrum of unmet needs.Assessing patients’ unmet needs is crucial for their recovery.The Chinese version of the Longer-term Unmet Needs after Stroke monitoring tool has good reliability and validity.This tool will help identify the unmet needs of stroke patients, enabling healthcare professionals to provide more tailored interventions and ultimately improve patients’ recovery. [ABSTRACT FROM AUTHOR]

Background: Patients with Fabry disease (FD) consider their quality of life to be significantly affected. The majority of studies evaluate the quality of life using quantitative measures and standardised scales that offer relevant information about experience with the disease in multiple aspects. The main objective of the research was to examine in depth the quality of life and unmet needs of patients diagnosed with FD in relation to their disease and treatment. A qualitative and transversal study was carried out in two stages: (a) nine semi-structured qualitative interviews with patients and one representative of the patient association, conducted individually by phone; (b) a focus group was set up with three patients diagnosed with FD and one relative. A deductive, thematic analysis approach was used for data coding and analysis. Results: The analysis of the interviews revealed various relevant themes: experience with the disease, impact on daily activities, experience of the family and work environment, experience related to treatment and healthcare professionals, and unmet support needs. Diagnosis has a significant impact on both those suffering from the disease and on the family environment. The symptoms and evolution of the disease are highly variable among the patients interviewed and depend on the years diagnosed as well as the time taken to receive the diagnosis. The families of the interviewees have to go through an adjustment process in light of the significant psychological impact brought about by the disease. Patients show various unmet needs. The need mentioned most is to have more information, support, and understanding from people around them and society, improving empathy and raising awareness about the difficulties faced by people with FD while giving the disease visibility. A lack of social understanding is highlighted as one of the main challenges, as this does not only affect the emotional management of the disease but also has repercussions on working life and social relationships. Conclusions: It seems necessary to define possible strategies that help to improve the quality of life of patients and their experience with the disease. Some recommendations obtained from the study include: facilitate access to mental health professionals for patients and their families; improve training for specialists and coordination among them; and carry out actions to raise awareness of the disease that are aimed at the general public, the patients themselves, and the people around them. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

INTRODUCTION: Unmet needs arise when everyday assistance is lacking. Epilepsy's unpredictability creates significant work-family conflict for working women, potentially leading to increased unmet needs. This study aimed to determine the prevalence and the factors related with the unmet needs of working mothers with children with epilepsy (CWE) in Kelantan. MATERIALS AND METHODS: A crosssectional study using the validated Malay version of the Family Needs Survey questionnaire was conducted among 204 working mothers aged 18 to 60 of CWE attending specialist hospitals in Kelantan. Data were analysed using descriptive statistics and multiple linear regression. RESULTS: The highest unmet need was for community services (81.6%), followed by information (71.9%), social support (53.1%), financial (43.2%), explaining to others (28.9%), and family functioning (28.4%). Having follow-ups at tertiary hospitals reduced the unmet need score for information (B=-0.669, 95%CI=-1.276,0.081, p=0.021) and social support (B=-1.454, 95%CI=-2.225, -0.683, p=<0.001). Living in nuclear types of family reduced the unmet need score for community services (B=-0.669, 95%CI=-1.276,0.081, p=0.021) and information (B=-1.216, 95%CI=-1.965,-0.466, p=0.002). Working in the government sector increased the unmet need score for social support (B=0.437, 95% CI=0.062, 1.454, p=0.033). Full-time employment (B=-0.761, 95%CI=-1.244,-0.279, p=0.002) reduced the unmet need score for family functioning. Contract employment status (B=0.566, 95%CI=0.074,1.058, p=0.024) increased the unmet need score for family functioning. CONCLUSION: Mothers of CWE working in the government sector, under contract employment, and seeking follow-up care in secondary hospitals were related to higher unmet needs. The study findings may assist policymakers in introducing a child-friendly employment policy and flexible working arrangements among working parents of children with chronic illnesses such as epilepsy. [ABSTRACT FROM AUTHOR]

Purpose: This scoping review was conducted to synthesize existing literature into a map of the common needs of families caring for patients with traumatic brain injury (TBI) at home. Materials and methods: A systematic search of studies published between January 2012 and December 2022 was conducted across databases. The selected studies reported the needs or unmet needs of patients with TBI and/or their family caregivers (FCs). Results: A total of 12 publications were identified. The results suggest that the common needs of families caring for patients with TBI at home include: information about TBI as a disease; information about the continuum of TBI healthcare services; information about adaptive technologies; education and skilling of FCs; psychological support and counseling; physical and occupational therapy services; follow-up care and transitional care management; respite care; peer support; financial assistance, advocacy, and legal services; emotional support from the family and community; and assistance with physical patient care and instrumental activities of daily living. Conclusion: The mapped needs provide insight into supportive interventions required to enhance the health outcomes of patients with TBI and their families during and after rehabilitation. The needs also highlight directions for research and healthcare services for patients with TBI. Implications for Rehabilitation: The families caring for patients with traumatic brain injury at home end up living in situations characterized by multiple unmet needs, and these can be a source of poor health outcomes for the family and patients with traumatic brain injury. The identified needs of families caring for patients with traumatic brain injury reveal gaps in the discharge planning and care coordination after acute and rehabilitation care. Addressing these needs requires a multidisciplinary approach and planning. Interventions using a holistic approach to address the identified needs may significantly improve the health outcomes of patients with traumatic brain injury and their families. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract Background Allocating healthcare resources to local areas in proportion to need is an important element of many universal health care systems, aiming to provide equal access for equal need. The UK National Health Service allocates resources to relatively large areas in proportion to need, using needs-weighted capitation formulae. However, within those planning areas, local providers and commissioners also require robust methods for allocating resources to neighbourhoods in proportion to need to ensure equitable access. We therefore developed a local resource allocation formula for NHS district nursing services for a City in the North West of England, demonstrating a novel application of the national formulae principles for equitable resource allocation to small areas. Methods Using linked data from community health services, primary care, secondary care and social care, we used a zero-inflated Poisson regression to model the number of district nursing services contacts for each individual based on predictors of need, while including the supply of district nurses per head to account for historical supply induced patterns. Individual need was estimated based on the predictions from this model, keeping supply fixed at the average. We then compared the distribution of district nurses between neighbourhoods, based on our formula, to the current service staffing distribution. Results Key predictors of need for district nursing services were age, deprivation, chronic diseases such as, cardiovascular disease, chronic liver disease, neurological disease, mental ill health, learning disability living in a nursing home, living alone, and receiving palliative care. Need for district nursing services was highly weighted towards older and more deprived populations. The current distribution of staff was, however, more correlated with age than deprivation. Moving to a needs-based staffing distribution would shift staff from less deprived areas to more deprived areas potentially reducing inequalities. Conclusion A neighbourhood-level model for needs for district nursing is a useful tool that can potentially improve the allocation of resources, addressing unmet need and inequalities.

Abstract Background The lack of adequate access to and use of sexual and reproductive health care by youth and adolescent, n low- and middle-income countries persists despite international accords on their rights, which exposes them to violence against children; early and unintended pregnancies; and sexually transmitted infections. This study examined functional sexual and reproductive health and right-based friendly services as perceived by exit male and female adolescents, caregivers, and health workers at the Tanzanian health services delivery points as they were the ones who would share their opinions to establish a diversified and representative reality about the matter based on sex. Methods This was a multicentric study among 205 randomly selected participants in eleven selected health facilities within the three regions of Tanzania including Dar es Salaam, Dodoma, and Kigoma regions using a one-time descriptive cross-sectional design with a quantitative research approach from 01 to 30 November 2022. Triangulation technique of data collection activities using structured questionnaires and observation checklist adopted from the Tanzanian Ministry of Health was used to collect data. IBM Statistical Package for Social Sciences version 26 data entry templates (Sa PSS – 26) were used to analyze data descriptively to establish frequencies and percentages. Results Results indicated that 205 participants were assessed in this study with a response rate of 100%. Exit adolescents (46%); health workers in dispensaries (60%), and community members (42%) were more likely to confirm the availability of functional SRH right-based adolescent and youth-friendly services at the health services delivery points. The SRH displays (50%); adolescent rights (6%) and confidentiality (5%) were the least reported functional SRH aspects by the study participants. It was noted that the 11 health services delivery points in their totality did not fully implement the National standards in providing the services to adolescents and youth of which standards III (54.0%) and VIII (46.1%) scored the lowest. Conclusion The results of this study have uncovered that there is disperities in the availability and accessibility of functional SRH right-based adolescent and youth-friendly services across the levels of health facilities; among adolescents and community members. Hospitals were more likely to confirm the availability of Functional Right Based Youth Friendly Services than at health centers and dispensaries with female adolescents, youth, and community members being disadvantaged. There is a need to address issues of differentials in equity to the accessibility of services among adolescents, youth, and community members by improving functional sexual and reproductive health and right-based friendly services provision infrastructures, health care workers capacity building, and mechanisms or approaches to increase adolescents’ access and uptake to SRHR services.

Yu-Juan Zheng,1 Yong-Chao Hou,2 Hua Zhao,3 Xiao-Yun Wang,4 Yu-Dan Liu,3 Li Li,5 Liang Yu,6 Ming-Mei Guo1 1Department of Cardiology, Shanxi Provincial People’s Hospital, Taiyuan, 030012, People’s Republic of China; 2Department of Emergency, Shanxi Provincial People’s Hospital, Taiyuan, 030012, People’s Republic of China; 3College of Nursing, Shanxi University of Chinese Medicine, Jinzhong, 030619, People’s Republic of China; 4Department of Endocrinology, Shanxi Provincial People’s Hospital, Taiyuan, 030012, People’s Republic of China; 5Department of Gynecology, Shanxi Provincial People’s Hospital, Taiyuan, 030012, People’s Republic of China; 6Neonatal Disease Screening Center, Shanxi Provincial Children’s Hospital, Taiyuan, 030013, People’s Republic of ChinaCorrespondence: Ming-Mei Guo, Department of Cardiology, Shanxi Provincial People’s Hospital, No. 29 Shuangtasi Street, Yingze District, Taiyuan, 030012, People’s Republic of China, Tel +86 13934533989, Email guomingmeigmm@126.comObjective: To conduct an in-depth exploration of the factors influencing unfulfilled needs in caregivers of patients with phenylketonuria.Methods: A rapid qualitative analysis approach was used to conduct semi-structured interviews with 16 caregivers of patients with phenylketonuria undergoing specialized dietary interventions, along with 5 medical professionals, within a designated phenylketonuria diagnosis and treatment center in Shanxi Province. Interview data were systematically organized, analyzed, and thematically extracted.Results: Four primary themes were extracted: self-imposed constraints (including insufficient caregiver engagement, economic limitations, and stigma); interpersonal constraints (encompassing social isolation, inadequate social support networks, and lack of doctor-patient interactions); structural limitation factors (inadequate provision of specialized professional support systems, lack of medical dietary supplements, and deficiencies in national policies); and experiential limitation factors (encompassing sensory perceptions of medical dietary supplements and insufficient continuity in psycho-emotional care).Conclusion: The unfulfilled needs of caregivers of patients with phenylketonuria primarily manifest across four dimensions. Greater emphasis on addressing these needs is warranted, necessitating increased attention to patients with phenylketonuria and their caregivers. Specifically, the focus should be directed toward addressing their emotional requirements, along with proactive development of the medical service infrastructure. Such measures are imperative for reducing unfulfilled needs among caregivers of patients and enhancing their prognosis.Keywords: caregivers, influencing factors, phenylketonuria, qualitative research, rare diseases, unmet needs

Background: The number of informal caregivers continues to rise worldwide. In Portugal, 10% of the population are informal caregivers and recent studies suggest that current government policies may not adequately support this population. This review aimed to find and synthesize relevant research on perceptions of unmet needs of informal caregivers of older people in Portugal. Methods/Design: A qualitative synthesis approach will be used. Electronic searches will be conducted on PubMed, EMBASE, PsycINFO, Web of Science, Academic Search Complete, and CINAHL. Gray literature will be searched through Portuguese databases and contact with researchers and patient organizations. Qualitative studies that evaluated Portuguese caregivers’ perceptions of unmet needs will be eligible. We will restrict to papers written in Spanish, English, or Portuguese and no date limitations will be applied. Data will be synthesized, and quality assessment will be done using CASP tool for qualitative research. PROSPERO registration number ID: CRD42022334859. Discussion: Findings from this future systematic review may lead to a better understanding of informal caregiving of older people in Portugal and may lead to the development of new policies and recommendations.

Abstract Background Patients with Fabry disease (FD) consider their quality of life to be significantly affected. The majority of studies evaluate the quality of life using quantitative measures and standardised scales that offer relevant information about experience with the disease in multiple aspects. The main objective of the research was to examine in depth the quality of life and unmet needs of patients diagnosed with FD in relation to their disease and treatment. A qualitative and transversal study was carried out in two stages: (a) nine semi-structured qualitative interviews with patients and one representative of the patient association, conducted individually by phone; (b) a focus group was set up with three patients diagnosed with FD and one relative. A deductive, thematic analysis approach was used for data coding and analysis. Results The analysis of the interviews revealed various relevant themes: experience with the disease, impact on daily activities, experience of the family and work environment, experience related to treatment and healthcare professionals, and unmet support needs. Diagnosis has a significant impact on both those suffering from the disease and on the family environment. The symptoms and evolution of the disease are highly variable among the patients interviewed and depend on the years diagnosed as well as the time taken to receive the diagnosis. The families of the interviewees have to go through an adjustment process in light of the significant psychological impact brought about by the disease. Patients show various unmet needs. The need mentioned most is to have more information, support, and understanding from people around them and society, improving empathy and raising awareness about the difficulties faced by people with FD while giving the disease visibility. A lack of social understanding is highlighted as one of the main challenges, as this does not only affect the emotional management of the disease but also has repercussions on working life and social relationships. Conclusions It seems necessary to define possible strategies that help to improve the quality of life of patients and their experience with the disease. Some recommendations obtained from the study include: facilitate access to mental health professionals for patients and their families; improve training for specialists and coordination among them; and carry out actions to raise awareness of the disease that are aimed at the general public, the patients themselves, and the people around them.

Abstract 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.

Objective(s): Unmet needs of relatives of patients with advanced cancer not only reduce their own health-related quality of life, but may also negatively affect patients' health outcomes. The aim of this study was to assess changes in relatives' unmet needs of patients with advanced cancer in the last year of life and to identify differences in unmet needs by gender and type of relationship. Methods: Relatives of patients with advanced cancer in the Netherlands were included in a prospective, longitudinal, observational study. Relatives' unmet needs were measured every 3 months with an adapted version of the Problems and Needs in Palliative Care (PNPC) questionnaire Caregiver form (44 items, 12 domains). Questionnaires completed in the patients' last year of life were analyzed. Change of unmet needs in the last year, and differences in unmet needs by gender and type of relationship were analyzed. Results: A total of 409 relatives were included with a median of 4 unmet needs in the patient's last year. Unmet needs were most prevalent at all time points during the last year in the domains "caring for the patient" (highest need = 35%) and "psychological issues" (highest need = 40%). The number of unmet needs of relatives did not change significantly during the last year of life (P =.807). There were no significant differences in the number of unmet needs between male and female partners and between partners and other relatives. Conclusion: The most unmet needs for relatives were in the domains "caring for the patient" and "psychological issues." Professional support should focus on these items. Within these domains, it seems especially important that relatives get more knowledge and support about what scenarios to expect and how to deal with them. [ABSTRACT FROM AUTHOR]

Abstract 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

Abstract 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.

Abstract 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.

Abstract The implementation and potential of ketogenic dietary therapies (KDTs) have changed over time. The organization of KDT services, the availability of multidisciplinary teams, resources and support for patients and families still vary widely around the world. This diversity is reflected by a lack of consistency in reported outcomes, optimization of using KDT and KDT compliance. To highlight the unmet needs for KDT services, the ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG) conducted an online survey on KDT implementation and utilization, addressing the following topics: Use and completeness of guidelines and protocols; assessment of compliance and outcome parameters, sustainability and inclusivity in daily life. Consistently reported unmet needs included the lack of psychological support and resources to measure and improve adherence to KDT, the lack of inclusion strategies, and shared guidelines and protocols adapting to specific needs. Future interventions should focus primarily on educational and informative measures together with creation of shared protocols for complex care. Plain Language Summary This study provides the results of a survey compiled by clinicians and patients representatives belonging to ERN Epicare, designed to unravel unmet needs from both patients' and healthcare practitioners' perspectives during ketogenic dietary therapies (KDT) provision. Importantly, results show the need to create new shared protocols and guidelines meant for KDT use in complex care situations and to develop future strategies initiatives to support patients improving their social inclusivity.

Purpose: While the unmet healthcare needs are still being improved upon, the wellbeing of cancer patients has increasingly become a prime concern in Malaysia. The objective of this study is to ascertain the trend of unmet supportive care needs, post-traumatic growth (P T G), coping strategies, and social supports among patients with breast cancer over the three time points of treatment: T1 at early diagnosis, T2 for three months after diagnosis, and T3 for six months after diagnosis. Methods: A total of 240 cancer patients participated in this prospective cohort study, with follow-up visits from October 2019 until July 2021. Data were collected using several instruments: Brief COP E, the Source of Social Support Scale (SSSS), the Post-Traumatic Growth Inventory - Short Form (P T GI-SF), and a Malay version of the 34-Item Shortform Supportive Care Need Survey (SCNS-SF34). Results: The results indicated a significant change from T1 to T3 for all domains of the unmet needs (p-value < 0.001), except for the sexual domain. A lower SCNS-SF34 score resulted from more unfavorable social support. The P T GI-SF results indicated a trend toward meeting the unmet needs, and a higher SCNS-SF-34 score predicted a considerably higher P T GI-SF score. Conclusions: Our study findings suggest that majority of the factors evaluated in terms of unmet needs among cancer patients have undergone considerable changes. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Caring for frail elderly (WEU) at home can be challenging and affects the needs of informal caregivers. In Malaysia, not many studies were focused on caregivers. Therefore, this study aims to explore the unmet needs (KTD) among frail elderly caregivers at home. The design of this study is qualitative with a phenomenological approach. This study was carried out in the district of Hulu Langat, Selangor using a sampling technique with inclusion criteria. A total of six frail elderly caregivers were successfully interviewed and identified through the UKM’s Pensioners Association, UKM’s Senior Citizens Activity Centre (PAWE) and the Local Residents' Associations. The data was analyzed thematically using manual analysis. The results of the study showed that five themes of KTD were experienced by caregivers in terms of emotional wellbeing, health problems, social needs, rest and sleep as well as work impact. All caregivers had at least one KTD and emotional well-being was the most frequently reported. There are caregivers who are so stressed and leave a negative impact on the WEU’s body. A few caregivers suffer from health problems including depression, anxiety, underweight, back pain and hand pain. Their social needs are also very limited and most caregivers are not involved in community activities. Caregivers also do not enjoy adequate rest and sleep. There are caregivers who quit their jobs to focus on caregiving. In conclusion, KTD among caregivers has a great impact on them selves and their WEUs. In fact, this problem has a high risk of contributing to more serious cases of abuse. Therefore, support for these caregivers needs to be paid attention to by all parties so that the KTD among caregivers can be reduced. [ABSTRACT FROM AUTHOR]

INTRODUCTION In India, despite significant progress in reproductive health services, there remain substantial unmet needs for family planning among married women. This situation not only affects maternal health but also impacts economic stability and overall well-being of families. OBJECTIVE To assess the unmet contraceptive needs among married women of reproductive age attending a tertiary care center in Western Odisha. MATERIALS AND METHODS A cross sectional study was conducted among 154 married women of reproductive age group attending the Outpatient department of the Obstetrics and Gynaecology (OBG) OPD of a tertiary care centre of Western Odisha between Jan- Feb 2021. They were all interviewed by using a predesigned and pretested semi-structured questionnaire. RESULTS 51.94% of the women belonged to the age of more than 25 years followed by 46.1% in the 18-25 years category. 8.44% were completely illiterate. 82.4% were home-makers. 41.55% women had one child,29.2% had two children,12.98% had more than 2 children and 16.23% women haven’t had a child yet. 44.80% couples had a baby girl as their last child. 79.22% of the women were of age 18-25years when they got married whereas 18.83% got married even before they crossed 18. Inter-spouse communication about contraception was present in 80.51% of couples. Implants and vasectomy were the least preferred ones followed by injectable contraceptives. The most common reasons for not using contraceptives were, lack of information (40.74%),fear of side effects (27.16%) and need for more children (13.58%). The least common reason was lactational amenorrhea (1.23%). CONCLUSION It was seen that 27.9% of the married had unmet need for contraception. [ABSTRACT FROM AUTHOR]

Many older adults are experiencing unmet needs for assistance with the activities of daily living (ADLs) and instrumental activities of daily living (IADLs). Such unmet needs might threaten their physical and psychosocial well-being. We conducted a systematic review to provide a comprehensive picture of the health consequences of unmet ADL/IADL needs among older adults. Twenty-eight published articles were included for qualitative synthesis. We found that unmet ADL/IADL needs were consistently associated with higher health care utilization (e.g., hospitalization, medical spending) and adverse psychosocial consequences (e.g., anxiety, depression), while the findings of falls and mortality remain inconsistent. More studies are needed to draw firm conclusions and to allow for quantitative synthesis. This review advocates for more coordinated and comprehensive long-term care services for older adults. Future studies should explore how the adverse health outcomes identified in this review can be prevented or improved by adequately meeting older adults' needs for assistance. [ABSTRACT FROM AUTHOR]

The implementation and potential of ketogenic dietary therapies (KDTs) have changed over time. The organization of KDT services, the availability of multidisciplinary teams, resources and support for patients and families still vary widely around the world. This diversity is reflected by a lack of consistency in reported outcomes, optimization of using KDT and KDT compliance. To highlight the unmet needs for KDT services, the ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG) conducted an online survey on KDT implementation and utilization, addressing the following topics: Use and completeness of guidelines and protocols; assessment of compliance and outcome parameters, sustainability and inclusivity in daily life. Consistently reported unmet needs included the lack of psychological support and resources to measure and improve adherence to KDT, the lack of inclusion strategies, and shared guidelines and protocols adapting to specific needs. Future interventions should focus primarily on educational and informative measures together with creation of shared protocols for complex care. Plain Language Summary: This study provides the results of a survey compiled by clinicians and patients representatives belonging to ERN Epicare, designed to unravel unmet needs from both patients' and healthcare practitioners' perspectives during ketogenic dietary therapies (KDT) provision. Importantly, results show the need to create new shared protocols and guidelines meant for KDT use in complex care situations and to develop future strategies initiatives to support patients improving their social inclusivity. [ABSTRACT FROM AUTHOR]

Background Unmet needs for ancillary services are substantial among people with human immunodeficiency virus (PWH), and provider type could influence the prevalence of unmet needs for these services. Methods Data from a national probability sample of PWH were analyzed from the Centers for Disease Control and Prevention's Medical Monitoring Project. We analyzed 2019 data on people who had ≥1 encounter with a human immunodeficiency virus (HIV) care provider (N = 3413) and their care facilities. We assessed the proportion of needs that were unmet for individual ancillary services, overall and by HIV care provider type, including infectious disease (ID) physicians, non-ID physicians, nurse practitioners, and physician assistants. We calculated prevalence differences (PDs) with predicted marginal means to assess differences between groups. Results An estimated 98.2% of patients reported ≥1 need for an ancillary service, and of those 46% had ≥1 unmet need. Compared with patients of ID physicians, needs for many ancillary services were higher among patients of other provider types. However, even after adjustment, patients of non-ID physicians had lower unmet needs for dental care (adjusted PD, −5.6 [95% confidence interval {CI}, −9.9 to −1.3]), and patients of nurse practitioners had lower unmet needs for HIV case management services (adjusted PD, −5.4 [95% CI, −9.4 to −1.4]), compared with patients of ID physicians. Conclusions Although needs were greater among patients of providers other than ID physicians, many of these needs may be met by existing support systems at HIV care facilities. However, additional resources may be needed to address unmet needs for dental care and HIV case management among patients of ID physicians. [ABSTRACT FROM AUTHOR]

Menstruation is a global public health issue with negative discourses of shame, embarrassment, and disgust. There is growing anecdotal evidence linking negative menstruation experiences at school to absenteeism. This systematic review and line‐of‐argument synthesis aims to develop a conceptual understanding of menstruation experiences in schools in high‐income countries. MEDLINE (Ovid), PsycINFO (Ovid), EMBASE (Ovid), HMIC (Ovid), and ERIC databases were searched. NVivo was used for thematic synthesis and reciprocal translation to generate third‐order constructs: overarching themes that interpretatively describe social processes around menstruation in schools. One thousand three hundred and thirty‐three studies were screened, with 19 meeting inclusion criteria. Six third‐order constructs were identified and integrated into a synthesized line‐of‐argument illustrating menstrual injustice at school. To ensure menstruating students do not face academic disadvantage because of schools' failure to accommodate menstrual needs, schools should challenge stigma, provide facilities to improve students' capability and confidence to manage menstruation, and provide academic support to menstruating students who miss classes. Future research should explore experiences of period poverty in HIC schools, examining the influence of gender identity, disability, race, and class on menstruation experiences. Practitioner Points: Menstrual symptoms, shame, and the failure of schools to take responsibility for menstruation management results in students self‐excluding and an unfair academic disadvantage.Schools need to provide facilities to improve students' capability and confidence to manage menstruation, such as free period products, full access to facilities for washing, product disposal, and pain management and academic support to menstruating students who miss classes.Schools should train all teachers in menstruation issues and deliver improved menstruation education to all students, alongside interventions that challenge menstrual shame. [ABSTRACT FROM AUTHOR]

Background/Aims: Six-month post-stroke reviews are advocated for all stroke survivors. There is no recommended service model, with many variations in practice. The aim of this service evaluation was to describe and evaluate the 6-month post-stroke review service provision across the South West England Integrated Stroke Delivery Networks. Methods: A mixed-methods service evaluation for 10 services was undertaken, consisting of: a stakeholder meeting to define the scope and review criteria; a mapping exercise to define core service features and activity data; a 12-month retrospective Sentinel Stroke National Audit Programme clinical data audit plus a 1-month prospective audit detailing identified unmet needs, actions to address needs and patient satisfaction; service provider and user guided discussions; and options appraisal synthesising data from all sources to inform service development. Results: Considerable variations in service configuration, processes and outcomes existed across services. Guided discussions with 40 service users and 20 service providers revealed predominantly positive experiences. There was perceived value in the review, a key ingredient being its person-centred nature. However, some felt that the review was generic and more of a tick-box exercise. Many staff appeared unaware of differing 6-month post-stroke review models across the region and rarely used Sentinel Stroke National Audit Programme data to reflect on service outcomes or inform service development. Sharing of good practice across services appeared limited. Conclusions: Data did not support a specific preferred service model. Findings suggested 6-month post-stroke reviews should not be a 'one size fits all' model, with flexibility in format and timing to optimise value. A knowledge sharing and evidence-based culture should be encouraged to nurture service development. [ABSTRACT FROM AUTHOR]

Background: Determining unmet need patterns and associated factors in primary care can potentially specify assessment batteries and tailor interventions in dementia more efficiently. Objective: To identify latent unmet healthcare need patterns and associated sociodemographic and clinical factors. Methods: This Latent Class Analysis (LCA) includes n = 417 community-dwelling people living with dementia. Subjects completed a comprehensive, computer-assisted face-to-face interview to identify unmet needs. One-hundred-fifteen predefined unmet medical, medication, nursing, psychosocial, and social care needs were available. LCA and multivariate logistic regressions were performed to identify unmet needs patterns and patient characteristics belonging to a specific pattern, respectively. Results: Four profiles were identified: [1] "few needs without any psychosocial need" (n = 44 (11%); mean: 7.4 needs), [2] "some medical and nursing care needs only" (n = 135 (32%); 9.7 needs), [3] "some needs in all areas" (n = 139 (33%); 14.3 needs), and [4] "many medical and nursing needs" (n = 99 (24%); 19.1 needs). Whereas the first class with the lowest number of needs comprised younger, less cognitively impaired patients without depressive symptoms, the fourth class had the highest number of unmet needs, containing patients with lower health status, less social support and higher comorbidity and depressive symptoms. Better access to social care services and higher social support reduced unmet needs, distinguishing the second from the third class (9.7 versus 14.3 needs). Conclusions: Access to the social care system, social support and depressive symptoms should be assessed, and the patient's health status and comorbidities monitored to more comprehensively identify unmet needs patterns and more efficiently guide tailored interventions. [ABSTRACT FROM AUTHOR]

This study aimed to test the psychometric properties of the Portuguese Supportive Care Needs Survey-Short Form-34 (SCNS-SF34-Pt) and its breast cancer-specific complementary module (SCNS-BR8-Pt). A further aim was to characterize Portuguese Breast Cancer Survivors' (BCS) unmet supportive care needs, using these measures. A convenient sample of BCS was recruited from five hospitals in Portugal and invited to complete SCNS-SF34-Pt and SCNS-BR8-Pt, EORTCQLQC30 and QLQBR23, the Generalized Anxiety Disorder, and the Patient Health-Questionnaire. The validity (i.e. convergent, discriminant and convergent validity) and reliability of SCNS-SF34-Pt and SCNS-BR8-Pt were statistically evaluated. BCS' unmet supportive care needs were descriptively assessed. 336 BCS participated in the study. A four-factor solution was produced for SCNS-SF34-Pt. This solution included the Physical and daily living needs, Psychological needs, Sexuality needs, and Health system, information, and patient support needs dimensions (73% of the total variance; Cronbach's alpha=.82 to.97). SCNS-SF34-Pt demonstrated good convergent validity. It could also discriminate between known-groups regarding age, disease staging, treatment performed, and ECOG performance status. SCNS-BR8-Pt revealed a single-factor structure (62% of the total variance; Cronbach's alpha=.91). Portuguese BCS' most prevalent unmet supportive care needs were associated with the Psychological, and Physical and daily living domains. Fear of cancer spreading, the inability to do things as usual, and lack of energy/tiredness were perceived as issues requiring further supportive care. SCNS-SF34-Pt and the SCNS-BR8-Pt are valid and reliable tools to assess Portuguese BCS' unmet supportive care needs. Fear of cancer spreading and lack of energy/tiredness concerns should be a target of supportive care services. [ABSTRACT FROM AUTHOR]

Introduction: Late‐onset Pompe disease (LOPD) is characterized by a progressive myopathy resulting from a deficiency of acid α‐glucosidase enzyme activity. Enzyme replacement therapy has been shown to be effective, but long‐term treatment results vary. Avalglucosidase alfa demonstrated non‐inferiority to alglucosidase alfa in a phase 3 study, allowing in France compassionate access for advanced LOPD patients unresponsive to alglucosidase alfa. Methods: Data from the French Pompe registry were analyzed for patients who benefited from a switch to avalglucosidase alfa with at least 1 year of follow‐up. Respiratory (forced vital capacity [FVC]) and motor functions (Six‐Minute Walk Test [6MWT]) were assessed before and 1 year after switching. Individual changes in FVC and 6MWT were expressed as slopes and statistical analyses were performed to compare values. Results: Twenty‐nine patients were included (mean age 56 years, 11 years of prior treatment). The FVC and 6MWT values remained stable. The individual analyses showed a stabilization of motor worsening: –1 m/year on the 6MWT after the switch versus –63 m/year the year before the switch (i.e., a worsening of 33%/year before vs. an improvement of 3%/year later). Respiratory data were not statistically different. Discussion: At the group level, gait parameters improved slightly with a stabilization of previous worsening, but respiratory parameters showed limited changes. At the individual level, results were discordant, with some patients with a good motor or respiratory response and some with further worsening. Conclusion: Switching to avalglucosidase alfa demonstrated varied responses in advanced LOPD patients with failing alglucosidase alfa therapy, with a general improvement in motor stabilization. [ABSTRACT FROM AUTHOR]