BACKGROUND: Research on rare diseases focuses less on caregivers, who play an important role in meeting the medical and social needs of the people they care for. Caregivers of people with rare diseases face negative outcomes due to problems with diagnosis, caring for complex conditions and expensive treatments. However, the factors that affect their quality of life are poorly understood. Poor mental and physical health of caregivers has a direct impact on the person they are caring for.
METHODS: To explore the literature on this topic, we conducted a scoping review in which we identified and analysed relevant studies to find out how extensively this topic has been researched. The articles were retrieved from the bibliographic databases PubMed, Ovid Medline and Ebsco Cinahl.
RESULTS: We initially identified 299 references and then included thirty-four articles. The included articles address three main topics, namely caregiver quality of life, health care accessibility, and the impact of health care accessibility on caregiver QOL.
CONCLUSIONS: This study provides information that is important to multiple providers of services as it can help to better understand caregivers and people with rare diseases and improve the quality of services offered. It highlights areas with the greatest need for change and offers insight into the complexity of caring for people with rare diseases, assisting policymakers in developing policies to support informal caregivers.

BACKGROUND: This study aimed to explore the influence of patient-, general practitioners (GP)-, and GP practice-level predictor variables on patient-experienced accessibility to GPs and GP practices. Additionally, we aimed to enhance our understanding of patient-experienced accessibility by analysing the free-text comments from patients who reported lowest accessibility scores to GPs and GP practices.
METHODS: We performed a secondary analysis of data from a 2021-2022 national Norwegian survey on patient experiences with their GP and GP practice. We identified seven accessibility-related items including experience and acceptance of regular waiting time and for urgent appointments, time spent with the GP, waiting time in the wating-room, and getting in touch with the GP practice by telephone. A composite accessibility score was computed. Predictor variables consisted of patient\'s self-reported characteristics, as well as background data about the GP and GP practice from National GP registry. The analysis included multiple linear regression of the composite accessibility score and seven accessibility items. Finally, a qualitative analysis was conducted of free-text survey comments among patients that had a score of 0 (unfavourable) on all the seven accessibility items.
RESULTS: The key factor for patient-experienced accessibility to general practice was seeing their own GP, showing a statistically significant positive correlation (p<0.001) across all seven accessibility items and the composite accessibility score in regression analyses. Other associations with positive experience included better self-reported health, and at the GP-level, a specialization in general medicine. Conversely, a negative experience was associated with longer time since the last GP consultation, female patients, and a higher number of GPs at the practice. Qualitative data confirmed accessibility challenges, detailing quantitative scores and highlighted that low accessibility scores were related to difficulties in seeing one\'s own GP.
CONCLUSIONS: This study highlights the importance of continuity between patient and their GP in improving patients\' experiences of accessibility to general practice. Several GP and GP practice-level factors were related to patient-reported accessibility. These results can be used to inform initiatives aimed at improving accessibility to general practice.

OBJECTIVE: This umbrella review aims to synthesise and summarise the role of teledentistry in improving oral health outcomes and access to dental care.
METHODS: We searched the databases PubMed (Medline), Scopus, CINHAL, OVID, ScienceDirect, JSTOR, JBI Database of Systematic Reviews & Implementation Reports and the Cochrane Database of Systematic Reviews through March 2024. Systematic reviews and meta-analyses on teledentistry were eligible for inclusion. No publication time or language restrictions were applied. Our search retrieved 24 studies for which we conducted quality assessments using the Joanna Biggs Institute (JBI) for Systematic Reviews and Research Synthesis Critical Appraisal Tool. Results were reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.
RESULTS: Studies addressed clinical oral health outcomes, health-related quality of life and patient experience, access to dental care and cost-effectiveness of teledentistry compared to conventional, face-to-face dental consultations. We found that there was consensus that teledentistry enhanced oral health through the early detection of oral lesions and increased access to dental care in remote areas and was time- and cost-saving.
CONCLUSIONS: Teledentistry can improve oral health outcomes and access to dental care. Future research on its impact on oral health equity is warranted.

Adolescents and young adults (AYAs) with cancer are a unique patient population in oncology. An opt-in, secure online survey was conducted among a general population of AYA patients and survivors to better understand the current landscape of AYA cancer. A 28-item online survey was designed for cancer patients and survivors diagnosed between the ages of 18 and 39 years. It comprised questions about demographics, treatment site, clinical trial involvement, support services available, and impact on employment, schooling, and finances. A total of 590 patients registered and 447 (76%) completed the survey. This online exercise was found to be feasible and can serve as an effective method to survey the AYA cancer population.

BACKGROUND: In previous research, older adults have been associated with reduced levels of health literacy (HL) influenced by a range of contextual factors. To optimise HL, it is essential to better understand the interactions between the ageing process and both personal and environmental factors as perceived by older adults. This study aimed to explore the experiences and needs of older community-dwelling adults when accessing, understanding, appraising and using health-related information.
METHODS: An explorative, qualitative design was used within the social constructivism framework. Semi-structured individual interviews were conducted with 20 adults aged 70-96 living at home in three areas in Northern Iceland. The transcribed interviews were constructed into categories and subcategories using qualitative content analysis.
RESULTS: Four categories emerged. \"Expectations for responsibility\" describes the experience that individuals are responsible for taking care of their health, including accessing, understanding, appraising and using information and services, showing initiative and keeping needed communications active. \"A gap between expectancy and ability/context\" includes experiences while taking responsibility for expectations not aligning with skills/situations, creating information gaps. \"Finding one\'s own ways\" comprises various adapted ways to access, understand, and use information and services. \"Bridging the gap\" describes experiences of needing shared responsibility and more manageable options to enable reasoned health-related decisions and navigation in the healthcare system.
CONCLUSIONS: The participants valued and took full responsibility for accessing, understanding, appraising and using information and services as part of a social norm; however, they experience information gaps. They request shared responsibility by being provided with fundamental health-related information as a vital step in making reasoned health-related decisions and navigating the healthcare system. They also request more inclusive and accessible service opportunities to bridge the gaps and facilitate HL. It is necessary to critically address, at a systematic level, the conflict between expected individual responsibility and the existence of options to act upon this responsibility. In matters of health, health services and HL, the need to analyse and confront structural disadvantages experienced by older adults is highlighted.

BACKGROUND: People with noncancer diagnoses have poorer access to palliative care units (PCUs) or hospices compared to those with cancer diagnoses. The COVID-19 pandemic disrupted how specialist palliative care services were delivered and utilized.
OBJECTIVE: To determine the association between the start of the COVID-19 pandemic and PCU/hospice utilization in hospitalized individuals with cancer and noncancer diagnoses with specialist palliative care needs.
METHODS: Retrospective cohort study using routinely collected data. Percentages of individuals experiencing each disposition from hospital, including discharge to PCU/hospice, were calculated monthly for the total, cancer, and noncancer cohorts and were analyzed descriptively. Hospitalized individuals with specialist palliative care needs at a single academic hospital in Toronto, Canada from January 1, 2017, to September 31, 2022 (pandemic start was defined as April 1, 2020).
RESULTS: The cohort comprised 4349 individuals (median age=78 years; 52.4% female); 3065 (70.5%) and 1284 (29.5%) had cancer and noncancer diagnoses, respectively. Among individuals with noncancer diagnoses, the most significant absolute changes were a 13.0%-decrease in in-hospital deaths (prepandemic=49.6%; postpandemic=36.6%) and a 11.6%-increase in discharges to PCU/hospice (prepandemic=35.6%; postpandemic=47.3%). Among individuals with cancer, the most significant absolute changes were a 12.8%-increase in discharges home with formal care (prepandemic=2.3%; postpandemic=15.1%) and a 7.0%-decrease in in-hospital deaths (prepandemic=29.1%; postpandemic=22.0%).
CONCLUSIONS: Despite historically poor PCU/hospice access, the COVID-19 pandemic created circumstances that may have enabled unprecedented utilization in individuals with noncancer diagnoses in our cohort.

During the COVID-19 pandemic, tele-mental health (TMH) was a viable approach for providing accessible mental and behavioral health (MBH) services. This study examines the sociodemographic disparities in TMH utilization and its effects on healthcare resource utilization (HCRU) and medical expenditures in Mississippi. Utilizing a cohort of 6787 insured adult patients at the University of Mississippi Medical Center and its affiliated sites between January 2020 and June 2023, including 3065 who accessed TMH services, we observed sociodemographic disparities between TMH and non-TMH cohorts. The TMH cohort was more likely to be younger, female, White/Caucasian, using payment methods other than Medicare, Medicaid, or commercial insurers, residing in rural areas, and with higher household income compared to the non-TMH cohort. Adjusting for sociodemographic factors, TMH utilization was associated with a 190% increase in MBH-related outpatient visits, a 17% increase in MBH-related medical expenditures, and a 12% decrease in all-cause medical expenditures (all p < 0.001). Among rural residents, TMH utilization was associated with a 205% increase in MBH-related outpatient visits and a 19% decrease in all-cause medical expenditures (both p < 0.001). This study underscores the importance of addressing sociodemographic disparities in TMH services to promote equitable healthcare access while reducing overall medical expenditures.

UNASSIGNED: In Canada, populations experiencing socioeconomic inequality have lower rates of access to screening and diagnosis and higher mortality rates than people from higher-income areas. Limited evidence exists concerning their experiences when living with advanced cancer. We explored how socioeconomic inequality shapes the experiences of patients with advanced cancer.
UNASSIGNED: We utilized a qualitative study design that combined tenets of hermeneutic phenomenological inquiry and critical theory. Four individuals with advanced cancer from low-income neighborhoods, three family members, and six cancer care providers were accrued through a tertiary cancer center in a western Canadian city. One-on-one interviews and brief notes were used for data collection. Data were analyzed through thematic analysis.
UNASSIGNED: Three interrelated themes were identified: \'Lack of access to socioeconomic supports,\' \'Gaps in access to health care resources and services,\' and \'Limited access to symptom relief.\' Patients experienced inadequate finances, housing, and transportation. Most patients lived alone and had limited family and social support. Patients reported lack of knowledge of available resources and health system navigation issues, including communication problems with providers and among levels of care. Cancer care providers and patients described issues achieving symptom relief as well as challenges associated with extensive disease.
UNASSIGNED: Study findings suggest that socioeconomic inequality interferes with the ability of persons with advanced cancer to access health care and contributes to less optimal cancer outcomes. Socioeconomic inequality may increase symptom severity. Findings call for the development of tailored interventions for populations with advanced cancer and socioeconomic inequality.

BACKGROUND: Unmet health care needs are considered a key indicator of equity in access to health care. For younger people, they can lead to poorer health outcomes in adulthood, for older people, they are associated with an increased risk of mortality. Unmet needs were therefore investigated as part of a research project on \"Improving the health-related life situation of young and old people in the Ruhr area.\"
METHODS: Unmet health care needs were surveyed with the help of semi-structured guideline interviews with younger and older people in the Ruhr area (n=29). Due to the spatial and social structure of the study region, the aim was to recruit especially people with a low subjective social status (SSS) for the study. The interviews were recorded, transcribed, and subjected to a qualitative content analysis and a supplementary frequency analysis. The reporting is based on the Standards for Qualitative Research (SRQR).
RESULTS: The respondents reported deficiencies in treatment and doctor-patient communication with GPs and specialists. The feeling of not being taken seriously due to age is cited several times by both age groups as a reason for unmet health care needs. Waiting times are particularly relevant in the case of specialist consultations, while co-payments for services mainly play a role in dentistry and orthodontics. Unmet needs are primarily reported by people with a medium SSS. Overall, almost two thirds of the respondents stated that they have or have had at least one unmet need. Participants with a low SSS report fewer unmet needs and do not mention any financial aspects as a cause. Explanations for this range from lower health literacy to the fear of being discredited.
CONCLUSIONS: The results provide indications of deficits in regional health care provision for younger and older people in the Ruhr region. Corresponding fields of action result from the areas of care and reasons identified as relevant for unmet health care needs. The reported findings also provide a basis for differentiated quantitative surveys with representative samples.

UNASSIGNED: People with disabilities (PWD) typically face a range of obstacles when accessing healthcare, particularly when compared with the general population. This challenge becomes more pronounced for PWDs in lower socioeconomic groups. This study aimed to assess the socioeconomic-related disparity in financial access to rehabilitation services among Iranian PWDS.
UNASSIGNED: A total of 766 Iranian PWDs aged ≥18 years participated in this cross-sectional study. We employed the concentration index (C) to estimate socioeconomic inequality in accessing rehabilitation services.
UNASSIGNED: In this study, 766 Iranian adults aged 18 to 70 took part, with a mean age of 36.50 (SD, ±10.02) years. The findings revealed that 72.15% (n = 469) of participants had to borrow money to cover the costs of rehabilitation services. The concentration index (C = -0.228, P = 0.004) demonstrated a notable concentration of inadequate financial access to rehabilitation services among individuals with lower socioeconomic status (SES). Decomposition analysis identified the wealth index as the primary contributor to the observed socioeconomic disparities, accounting for 309.48%.
UNASSIGNED: Our findings show that socioeconomic inequalities disproportionately impact PWDs in lower socioeconomic groups. It is recommended that efforts be made to enhance the national capacity for monitoring the financial protection of PWDs and to develop equitable mechanisms that promote prepayment and risk pooling, thus reducing reliance on out-of-pocket payments at the time of service utilization.