Factors associated with delay or avoidance of medical care during the COVID-19 pandemic in Armenia: results from a nationwide survey.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has disrupted healthcare systems throughout the world. Many patients faced delays and cancellation of care due to scaled back services, mobility restrictions, and concerns related to the risk of infection. The present study aimed to assess the prevalence of and risk factors associated with the avoidance or delay of medical care due to COVID-19 in Armenia. METHODS: We conducted a cross-sectional telephone survey of 3,483 adults across Armenia. We used stratified two-stage cluster sampling to select the participants from different age groups proportionate to their size in the population. Logistic regression analysis assessed the association of risk factors with avoidance/delay of routine, urgent/emergency, and any medical care. RESULTS: The mean age of the sample was 49.5 (SD = 14.8), ranging from 18 to 90. About 9.9% of the respondents avoided/delayed any type of medical care; whereas 5.5% avoided/delayed urgent/emergency care and 6.6% routine care. In the adjusted analysis, female gender and higher monthly expenditures were associated with avoidance/delay of routine medical care. Factors associated with delay/avoidance of urgent/emergency care included female gender and higher perceived threat of COVID-19. Younger age, female gender, higher perceived threat and not being vaccinated against COVID-19 were associated with avoidance/delay of any medical care in the adjusted analysis. CONCLUSION: Since avoiding or delaying care might increase morbidity and mortality associated with conditions not related to COVID-19, identifying population groups that are more likely to avoid care is important. Targeting such groups with educational interventions focusing on the risks of using versus not using medical care in times of pandemic might be crucial. Ensuring the provision of in-home healthcare services for high-risk groups might help to address important medical care needs during the pandemic.

Establishing Best Practices in Telehealth Care for Adults with Developmental Disabilities in the United States: An e-Delphi Study.

Background: Telehealth care is now a key element of mainstream health care since the COVID-19 pandemic, with all types of health care providers joining the digital revolution. As a population experiencing health care disparities, adults with developmental disabilities and their supporters have described variable experiences with telehealth care that contribute to overall care quality and health outcomes. Methods: This e-Delphi study established consensus on best practices in telehealth care for adults with developmental disabilities in the United States. Online surveys and videoconferencing interviews were conducted with 44 expert panelists with experience with telehealth care and developmental disabilities, including adults with developmental disabilities, family members, direct support professionals, nurses, and health care providers. Results: Three rounds of surveys resulted in a set of 9 guidelines consisting of 42 items. The guidelines addressed 1) appropriate situations for telehealth care, 2) communication needs and preferences, 3) support person collaboration, 4) education and anticipatory guidance, 5) reminders, 6) coordination of care, 7) equitable and fair access, 8) privacy and safety, and 9) evidence-based practice. Conclusion: Health care providers can adopt these best practice guidelines to ensure telehealth care is provided equitably and safely to adults with developmental disabilities. Policy advocacy is needed for the uptake of these guidelines and for health care providers and adults with developmental disabilities to access the resources needed for safe and effective telehealth care use.

Barriers in Cleft Service Access in Sub-Saharan Africa: A Thematic Analysis of Practical Needs of Rural Families.

OBJECTIVE: To explore the experiences and perceptions of barriers of parents and family members of patients with cleft lip and palate in accessing cleft services in remote northwest Nigeria. DESIGN: Face-to-face semi-structured audio recorded interviews were used to obtained qualitative textual data. Thematic analysis using interpretative descriptive techniques was employed to understand the participants' lived experiences with barriers and accessibility to cleft services. SETTING: Participants were from Sokoto, Kebbi and Zamfara states in remote northwest, Nigeria. PARTICIPANTS: Consisted of 22 caregivers (17 parents and 5 extended family members) were purposively sampled between 2017 and 2020. MAIN OUTCOME MEASURES: Barriers experienced while accessing cleft services were identified during thematic analysis. RESULT: Over three quarter of the respondents had patients with both cleft lip and palate and without any previous family history (n = 20). About two-thirds of the participants (n = 15) were females. Most of the interviews were conducted before the surgeries (n = 15). FIVE THEMES EMERGED: lack of information, financial difficulty, misrepresentation from health workers, multiple transportation and previous disappointment. CONCLUSIONS: Areas of poor awareness, misinformation from primary health care workers, financial hurdles, multiple transportation logistics and others were identified. Aggressive broadcasting of information through radio, timely treatment and collaboration with influential religious leaders were emphasized. Support, grants and subsidies from government and voluntary agencies are encouraged to mitigate the huge out of pocket cost of cleft care in the region.

Introducing a triage and Nurse on Call model in primary health care - a focus group study of health care staff's experiences.

BACKGROUND: With the increased demand for health care services and with simultaneous staff shortages, new work models are needed in primary health care. In November 2015, a Swedish primary health care centre introduced a work model consisting of a structured patient sorting system with triage and Nurse on Call. The aim of this study was to describe the staff's experiences of introducing the triage and Nurse on Call model at the primary health care centre. METHODS: Five focus group discussions with staff (n = 39) were conducted 4 years after the introduction of the work model. Groups were divided by profession: medical secretaries, nursing assistants, physicians, primary health care nurses, and registered nurses. The transcribed text from the discussions was analysed using qualitative inductive content analysis. RESULTS: The analysis generated one overarching theme: The introduction of triage and Nurse on Call addresses changed preconditions in primary health care, but the work culture, organization, and acquisition of new knowledge are lagging behind. The overarching theme had five categories: (1) Changed preconditions in primary health care motivate new work models; (2) The triage and Nurse on Call model improves teamwork and may increase the quality of care; (3) Unclear purpose and vague leadership make introducing the work model difficult; (4) Difficulties to adopt the work model as it challenges professional autonomy; and (5) The triage and Nurse on Call model requires more knowledge and competence from nurses in primary health care. CONCLUSIONS: This study contributes with knowledge about implications of a new work model in primary health care from the perspective of health care staff. The work model using triage and Nurse on Call in primary health care was perceived by participants to increase availability and optimize the use of resources. However, before introduction of new work models, it is important to identify barriers to and facilitators for successful improvements in the local health care context. Additional education for the health care staff is important if the transition is to be successful. Complementary skills and teamwork, supported by a facilitator seems important to ensure a well-prepared workforce.

Distance is "a big problem": a geographic analysis of reported and modelled proximity to maternal health services in Ghana.

BACKGROUND: Geographic barriers to healthcare are associated with adverse maternal health outcomes. Modelling travel times using georeferenced data is becoming common in quantifying physical access. Multiple Demographic and Health Surveys ask women about distance-related problems accessing healthcare, but responses have not been evaluated against modelled travel times. This cross-sectional study aims to compare reported and modelled distance by socio-demographic characteristics and evaluate their relationship with skilled birth attendance. Also, we assess the socio-demographic factors associated with self-reported distance problems in accessing healthcare. METHODS: Distance problems and socio-demographic characteristics reported by 2210 women via the 2017 Ghana Maternal Health Survey were included in analysis. Geospatial methods were used to model travel time to the nearest health facility using roads, rivers, land cover, travel speeds, cluster locations and health facility locations. Logistic regressions were used to predict skilled birth attendance and self-reported distance problems. RESULTS: Women reporting distance challenges accessing healthcare had significantly longer travel times to the nearest health facility. Poverty significantly increased the odds of reporting challenges with distance. In contrast, living in urban areas and being registered with health insurance reduced the odds of reporting distance challenges. Women with a skilled attendant at birth, four or more skilled antenatal appointments and timely skilled postnatal care had shorter travel times to the nearest health facility. Generally, less educated, poor, rural women registered with health insurance had longer travel times to their nearest health facility. After adjusting for socio-demographic characteristics, the following factors increased the odds of skilled birth attendance: wealth, health insurance, higher education, living in urban areas, and completing four or more antenatal care appointments. CONCLUSION: Studies relying on modelled travel times to nearest facility should recognise the differential impact of geographic access to healthcare on poor rural women. Physical access to maternal health care should be scaled up in rural areas and utilisation increased by improving livelihoods.

Access to primary healthcare Services in Conflict-Affected Fragile States: a subnational descriptive analysis of educational and wealth disparities in Cameroon, Democratic Republic of Congo, Mali, and Nigeria.

BACKGROUND: Measuring and improving equitable access to care is a necessity to achieve universal health coverage. Pre-pandemic estimates showed that most conflict-affected and fragile situations were off-track to meet the Sustainable Development Goals on health and equity by 2030. Yet, there is a paucity of studies examining health inequalities in these settings. This study addresses the literature gap by applying a conflict intensity lens to the analysis of disparities in access to essential Primary Health Care (PHC) services in four conflict-affected fragile states: Cameroon, Democratic Republic of Congo, Mali and Nigeria. METHODS: For each studied country, disparities in geographic and financial access to care were compared across education and wealth strata in areas with differing levels of conflict intensity. The Demographic Health Survey (DHS) and the Uppsala Conflict Data Program were the main sources of information on access to PHC and conflict events, respectively. To define conflict intensity, household clusters were linked to conflict events within a 50-km distance. A cut-off of more than two conflict-related deaths per 100,000 population was used to differentiate medium or high intensity conflict from no or low intensity conflict. We utilized three measures to assess inequalities: an absolute difference, a concentration index, and a multivariate logistic regression coefficient. Each disparity measure was compared based on the intensity of conflict the year the DHS data was collected. RESULTS: We found that PHC access varied across subnational regions in the four countries studied; with more prevalent financial than geographic barriers to care. The magnitude of both educational and wealth disparities in access to care was higher with geographic proximity to medium or high intensity conflict. A higher magnitude of wealth rather than educational disparities was also likely to be observed in the four studied contexts. Meanwhile, only Nigeria showed statistically significant interaction between conflict intensity and educational disparities in access to care. CONCLUSION: Both educational and wealth disparities in access to PHC services can be exacerbated by geographic proximity to organized violence. This paper provides additional evidence that, despite limitations, household surveys can contribute to healthcare assessment in conflict-affected and fragile settings.

Improving access to healthcare for paediatric sickle cell disease patients: a qualitative study on healthcare professionals' views.

BACKGROUND: In well-resourced countries, comprehensive care programs have increased life expectancy of patients with sickle cell disease, with almost all infants surviving into adulthood. However, families affected by sickle cell disease are more likely to be economically disenfranchised because of their racial or ethnic minority status. As every individual child has the right to the highest attainable standard of health under the United Nations Convention on the Rights of the Child, it is essential to identify both barriers and facilitators with regard to the delivery of adequate healthcare. Optimal healthcare accessibility will improve healthcare outcomes for children with sickle cell disease and their families. Healthcare professionals in the field of sickle cell care have first-hand experience of the barriers that patients encounter when it comes to effective care. We therefore hypothesised that these medical professionals have a clear picture of what is necessary to overcome these barriers and which facilitators will be most feasible. Therefore, this study aims to map best practises and lessons learnt in order to attain more optimal healthcare accessibility for paediatric patients with sickle cell disease and their families. METHODS: Healthcare professionals working with young patients with sickle cell disease were recruited for semi-structured interviews. An interview guide was used to ensure the four healthcare accessibility dimensions were covered. The interviews were transcribed and coded. Based on field notes, initial codes were generated, to collate data (both barriers and solutions) to main themes (such as "transportation", or "telecommunication"). Through ongoing thematic analysis, definitive themes were formulated and best practices were reported as recommendations. Quotations were selected to highlight or illustrate the themes and link the reported results to the empirical data. RESULTS: In 2019, 22 healthcare professionals from five different university hospitals in the Netherlands were interviewed. Participants included (paediatric) haematologists, nurses and allied health professionals. Six themes emerged, all associated with best practices on topics related to the improvement of healthcare accessibility for children with sickle cell disease and their families. Firstly, the full reimbursement of invisible costs made by caregivers. Secondly, clustering of healthcare appointments on the same day to help patients seeing all required specialists without having to visit the hospital frequently. Thirdly, organisation of care according to shared care principles to deliver specialised services as close as possible to the patient's home without compromising quality. Fourthly, optimising verbal and written communication methods with special consideration for families with language barriers, low literacy skills, or both. Fifthly, improving the use of eHealth services tailored to users' health literacy skills, including accessible mobile telephone contact between healthcare professionals and caregivers of children with sickle cell disease. Finally, increasing knowledge and interest in sickle cell disease among key stakeholders and the public to ensure that preventive and acute healthcare measures are understood and safeguarded in all settings. CONCLUSION: This qualitative study describes the views of healthcare professionals on overcoming barriers of healthcare accessibility that arise from the intersecting vulnerabilities faced by patients with sickle cell disease and their families. The recommendations gathered in this report provide high-income countries with a practical resource to meet their obligations towards individual children under the United Nations Convention on the Rights of the Child.

The Vienna self-assessment questionnaire: a usable tool towards more health-literate hospitals? Explorative case studies in three hospitals in Belgium.

BACKGROUND: Strengthening the capacity of hospitals to take into account the level of health literacy of their public is a necessity to improve the quality of care. One way to develop adequate health literacy responsive policy and strategies in hospitals is the use of self-assessment tools to raise awareness, help prioritise action and mobilise stakeholders. The Vienna Health Literate Organisation (V-HLO) questionnaire, recently translated and adapted into French, is designed to meet this objective. In this study we have piloted the French version of the V-HLO (V-HLO-fr) tool in the main hospitals of Liège (Belgium) to explore its feasibility and gain a first insight into the strengths and weaknesses of the health literacy responsiveness of the participating hospitals. METHODS: We performed explorative case studies in three hospitals. Our mode of application of the V-HLO-fr was inspired by the 'RAND Appropriateness' method: first, individual members of an internal multidisciplinary panel filled out the questionnaire and then the results were discussed collectively in each hospital during a 'round table' meeting. The feasibility of the process was assessed by direct observation of the round tables and with semi-structured phone interviews. RESULTS: The V-HLO-fr tool was fully applied in the three targeted hospitals and the process seems to be acceptable, practicable and integrable. Strengths (e.g. the facilitation of patient navigation to the hospital) and weaknesses (e.g. the provision of easy to read, understand and act on health information materials) in terms of health literacy responsiveness have been highlighted. CONCLUSION: V-HLO-fr can be a suitable tool for a needs assessment that allows hospitals to create awareness and formulate targeted actions to further strengthen their health literacy responsiveness. Its mode of application, formalised by taking inspiration from the RAND method, could be further improved by paying more attention to recruiting and supporting participants. The V-HLO-fr and its added value in real-world projects should now be further tested in a larger number of hospitals.

Important components for Dutch in-home care based on qualitative interviews with persons with dementia and informal caregivers.

BACKGROUND: Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. OBJECTIVE: To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. DESIGN: Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. SETTING AND PARTICIPANTS: Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. RESULTS: Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. CONCLUSION: This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.

'Mankind owes to the child the best that it has to give': prison conditions and the health situation and rights of children incarcerated with their mothers in sub-Saharan African prisons.

BACKGROUND: In recent times, sub-Saharan African (SSA) prisons have seen a substantial increase in women prisoners, including those incarcerated with children. METHODS: A scoping review mapped what is currently known about the health situation and unique rights violations of children incarcerated with their mothers in SSA prisons. A systematic search collected and reviewed all available and relevant published and grey literature (2000-2018). Following application of exclusion measures, 64 records remained, which represented 27 of the 49 SSA countries. These records were charted and thematically analysed. RESULTS: Four main themes were generated as follows: 1) the prison physical environment; 2) food availability, adequacy and quality; 3) provision of basic necessities and 4) availability and accessibility of health services for incarcerated children. CONCLUSIONS: The review highlights the grave situation of children incarcerated with their mothers in SSA prisons, underpinned by the lack of basic necessities, inadequate hygiene, sanitation and safe drinking water, exposure to diseases in overcrowded cells, inadequate nutrition, lack of provision of clothing and bedding, and difficulties accessing paediatric care. Reported paediatric morbidity and mortality associated with such prison conditions is deeply concerning and contrary to international mandates for the rights of the child, right to health and standards of care.

Prison health situation and health rights of young people incarcerated in sub-Saharan African prisons and detention centres: a scoping review of extant literature.

BACKGROUND: Treatment and special protection of the rights of incarcerated young people in prisons are mandated under the Sustainable Development Goals (SDG), as well as under United Nations (UN) human rights instruments. METHODS: A scoping review mapped what is currently known about prison conditions and health situation of detained and incarcerated young people in sub- Saharan African (SSA) prisons. A systematic search collected and reviewed all available and relevant published and grey literature. Following application of exclusion measures, 54 records remained, which represented 37 of the 49 SSA countries. These records were charted and thematically analysed. RESULTS: The ages of children and adolescents held in SSA prisons ranged from 12 to 18 years. Three main themes were generated during the charting exercise; the prison environment for young people; availability and accessibility of basic necessities and navigating the prison system for health care and outside continuum of care. CONCLUSIONS: The review highlights the grave and continuing deplorable situation of young people held in SSA prisons. The violation of international human rights norms is observed in the systemic abuse and detention of young people with adults. Basic needs are not met in relation to sanitation, ventilation, safe spaces, protection from physical and sexual violence, clothing, food and access to HIV and medical care.

Decreased endemic malaria in Suriname: moving towards elimination.

BACKGROUND: Suriname has moved from being the country with the highest annual parasite index in the Americas to one on the threshold of elimination. The progress toward elimination in the stable populations of Suriname between 2000 and 2015 is reviewed. METHODS: Data was obtained from the Medical Mission and the Ministry of Health Malaria Programme case-reporting systems, and analysed with a focus on disease burden and differentiation of the disease geographically, by malaria species, age, gender, ethnicity, incidence and gametocytaemia. RESULTS: Between 2000 and 2015 there were 57,811 locally acquired cases of malaria in the stable populations of Suriname. A significant reduction in indigenous malaria cases was observed from 2006 to 2015. The number of imported malaria cases saw a relative increase compared to the number of autochthonous cases. In 2015 over 95% of the cases reported in stable communities are imported, mainly from neighbouring French Guiana, a department of France. The overall decline in malaria case incidence followed the mass-distribution of free long-lasting insecticide-impregnated mosquito nets and increased awareness building efforts, improved access to malaria services as a result of the introduction of Rapid Diagnostic Tests and the implementation of active case detection in high risk areas. In addition, improved management of Plasmodium falciparum infections was achieved with the introduction of artemisinin combination therapy. CONCLUSIONS: The existence of a network of policlinics in the interior ran by Medical Mission, for the indigenous population, allowed the rapid implementation of the strategy in stable communities. The success of malaria control in Suriname indicates that the availability at local level, of prompt and adequate prevention, diagnosis and treatment is a key requirement for the elimination of malaria.

The approaches to measuring the potential spatial access to urban health services revisited: distance types and aggregation-error issues.

BACKGROUND: The potential spatial access to urban health services is an important issue in health geography, spatial epidemiology and public health. Computing geographical accessibility measures for residential areas (e.g. census tracts) depends on a type of distance, a method of aggregation, and a measure of accessibility. The aim of this paper is to compare discrepancies in results for the geographical accessibility of health services computed using six distance types (Euclidean and Manhattan distances; shortest network time on foot, by bicycle, by public transit, and by car), four aggregation methods, and fourteen accessibility measures. METHODS: To explore variations in results according to the six types of distance and the aggregation methods, correlation analyses are performed. To measure how the assessment of potential spatial access varies according to three parameters (type of distance, aggregation method, and accessibility measure), sensitivity analysis (SA) and uncertainty analysis (UA) are conducted. RESULTS: First, independently of the type of distance used except for shortest network time by public transit, the results are globally similar (correlation >0.90). However, important local variations in correlation between Cartesian and the four shortest network time distances are observed, notably in suburban areas where Cartesian distances are less precise. Second, the choice of the aggregation method is also important: compared with the most accurate aggregation method, accessibility measures computed from census tract centroids, though not inaccurate, yield important measurement errors for 10% of census tracts. Third, the SA results show that the evaluation of potential geographic access may vary a great deal depending on the accessibility measure and, to a lesser degree, the type of distance and aggregation method. Fourth, the UA results clearly indicate areas of strong uncertainty in suburban areas, whereas central neighbourhoods show lower levels of uncertainty. CONCLUSION: In order to accurately assess potential geographic access to health services in urban areas, it is particularly important to choose a precise type of distance and aggregation method. Then, depending on the research objectives, the choices of the type of network distance (according to the mode of transportation) and of a number of accessibility measures should be carefully considered and adequately justified.

Association of ethnicity with unintentional injury-related hospitalisation and mortality among older people residing in two regions of Aotearoa New Zealand.

OBJECTIVES: To characterise unintentional injury-related hospitalisation and mortality amongst older adults (aged 50+ years) in the Lakes and Bay of Plenty District Health Boards of Aotearoa New Zealand and to examine whether hospitalisation patterns differed by ethnicity. METHODS: This observational study analysed unintentional injury-related hospitalisations and deaths among older adults between 2014 and 2018. Routinely collected national data sets were used to calculate annualised, age-standardised injury rates. The independent variable of interest was ethnicity (Maori or non-Maori). RESULTS: There were 11,834 unintentional injury-related hospitalisations in the study period (n = 1444 for Maori). Overall, there was no significant difference in the age-standardised hospitalisation rate between Maori and non-Maori (Standardised Rate Ratio [SRR] = 0.96 [95% CI 0.90, 1.02]). Falls were the most common mechanism of injury among Maori and non-Maori overall (50% and 71%) and relative risks of falls increased with age. Non-Maori were 57% less likely to be hospitalised for unintentional poisoning than Maori (SRR = 0.43, [0.34, 0.59]). CONCLUSIONS: The mechanisms of injury, and variation in unintentional injury-related hospitalisation rates between Maori and non-Maori, change throughout older age, and incidence increase0073 with age. Falls cause significant injury-related hospitalisations for older Maori and responsive injury prevention and rehabilitation efforts are warranted to achieve equitable health outcomes.

Barriers for Adult Patients to Access Palliative Care in Hospitals: A Mixed Methods Systematic Review.

BACKGROUND: Access to palliative care services is variable, and many inpatients do not receive palliative care. An overview of potential barriers could facilitate the development of strategies to overcome factors that impede access for patients with palliative care needs. AIM: To review the current evidence on barriers that impair, delay, or prohibit access to palliative care for adult hospital inpatients. DESIGN: A mixed methods systematic review was conducted using an integrated convergent approach and thematic synthesis (PROSPERO ID: CRD42021279477). DATA SOURCES: The Cochrane Library, MEDLINE, CINAHL, and PsycINFO were searched from 10/2003 to 12/2020. Studies with evidence of barriers for inpatients to access existing palliative care services were eligible and reviewed. RESULTS: After an initial screening of 3,359 records and 555 full-texts, 79 studies were included. Thematic synthesis yielded 149 access-related phenomena in 6 main categories: 1) Sociodemographic characteristics, 2) Health-related characteristics, 3) Individual beliefs and attitudes, 4) Interindividual cooperation and support, 5) Availability and allocation of resources, and 6) Emotional and prognostic challenges. While evidence was inconclusive for most socio-demographic factors, the following barriers emerged: having a noncancer condition or a low symptom burden, the focus on cure in hospitals, nonacceptance of terminal prognosis, negative perceptions of palliative care, misleading communication and conflicting care preferences, lack of resources, poor coordination, insufficient expertise, and clinicians' emotional discomfort and difficult prognostication. CONCLUSION: Hospital inpatients face multiple barriers to accessing palliative care. Strategies to address these barriers need to take into account their multidimensionality and long-standing persistence.

Multiple Sclerosis and COVID-19: Health and healthcare access, health information and consumer co-created strategies for future access at times of crisis.

BACKGROUND: Persons with multiple sclerosis (MS) need regular access to medical services for optimal health outcomes. During the COVID-19 crisis, evidence indicated some detrimental health changes in persons with MS. Maintaining access to healthcare providers and healthcare information may minimise detrimental health changes during times of crisis. In Australia, there is limited evidence of consultation with people who have chronic health conditions or disabilities regarding government decisions to restrict healthcare access and in the provision of health guidance during the COVID-19 crisis. Yet, there are good examples of government consultation with other minority populations in Australia, leading to beneficial outcomes. OBJECTIVE: To identify MS community members' (persons with MS carers, advocates, healthcare providers) concerns about the health and healthcare access of persons with MS, during the second year of the COVID-19 pandemic and to collaborate with consumers in the MS community to co-create strategies to improve future access and health information provision at times of crisis. METHOD: We undertook a consumer-co-created mixed-method study in the second year of the COVID-19 pandemic to identify healthcare access needs for MS. We presented results to our stakeholder group to identify support needs during crises. Persons with MS and care providers in the MS community completed an online survey and online interviews, and the stakeholder group participated in a stakeholder workshop. RESULTS: Forty-four people participated in surveys, 33 completed interviews, and seven stakeholders participated in the stakeholder workshops. Three themes were identified from the surveys and interviews: health concerns, accessing healthcare services and communication sources. Healthcare providers (76.9 % of persons with MS and 77.8 % of care providers) and websites specific to the pandemic (76.9 % of persons with MS and 83.3 % of care providers) were identified by most survey respondents as preferred information sources during the COVID-19 crisis. Consultation with stakeholders resulted in the co-creation of strategies directed at communication, health, and lifestyle, as well as policies and protocols to address the needs of the MS community during crises. CONCLUSION: We listened to persons with MS and care providers to identify strategies to support health-communication, -access, and -lifestyle during crises. Consumer-created strategies are directed at national and local health advocacy organisations and governments. They are relevant for the coordinated healthcare planning of persons with chronic health conditions and disabilities during crises, such as those experienced by persons with MS.

Determining the association of rurality and cardiovascular disease among prostate cancer survivors.

PURPOSE: Rural disparities in prostate cancer survivorship and cardiovascular disease remain. Prostate cancer treatment also contributes to worse cardiovascular disease outcomes. Our objective was to determine whether rural-urban differences in cardiovascular outcomes contribute to disparities in prostate cancer survivorship. MATERIALS AND METHODS: Data were collected from the Utah Population Database. Rural and urban prostate cancer survivors were matched by diagnosis year and age. Cox proportional hazards models were used to estimate hazard ratios for cardiovascular disease (levels 1-3) based on rural-urban classification, while controlling for demographic and socioeconomic characteristics. We identified 3,379 rural and 16,253 urban prostate cancer survivors with a median follow-up of 9.3 years. RESULTS: Results revealed that rural survivors had a lower risk of hypertension (HR 0.90), diseases of arteries (HR 0.92), and veins (HR 0.92) but a higher risk of congestive heart failure (HR 1.17). Interactions between level 2 cardiovascular diseases and rural/urban status, showed that diseases of the heart had a distinct between-group relationship for all-cause (P = 0.005) and cancer-specific mortality (P = 0.008). CONCLUSIONS: This study revealed complex relationships between rural-urban status, cardiovascular disease, and prostate cancer. Rural survivors were less likely to be diagnosed with screen-detected cardiovascular disease but more likely to have heart failure. Further, the relationship between cardiovascular disease and survival was different between rural and urban survivors. It may be that our findings underscore differences in healthcare access where rural patients are less likely to be screened for preventable cardiovascular disease and have worse outcomes when they have a major cardiovascular event.

Do it fast! Early access to specialized care improved long-term outcomes in rheumatoid arthritis: data from the REAL multicenter observational study.

BACKGROUND: Early rheumatoid arthritis (RA) offers an opportunity for better treatment outcomes. In real-life settings, grasping this opportunity might depend on access to specialized care. We evaluated the effects of early versus late assessment by the rheumatologist on the diagnosis, treatment initiation and long-term outcomes of RA under real-life conditions. METHODS: Adults meeting the ACR/EULAR (2010) or ARA (1987) criteria for RA were included. Structured interviews were conducted. The specialized assessment was deemed "early" when the rheumatologist was the first or second physician consulted after symptoms onset, and "late" when performed afterwards. Delays in RA diagnosis and treatment were inquired. Disease activity (DAS28-CRP) and physical function (HAQ-DI) were evaluated. Student's t, Mann-Whitney U, chi-squared and correlation tests, and multiple linear regression were performed. For sensitivity analysis, a propensity score-matched subsample of early- vs. late-assessed participants was derived based on logistic regression. The study received ethical approval; all participants signed informed consent. RESULTS: We included 1057 participants (89.4% female, 56.5% white); mean (SD) age: 56.9 (11.5) years; disease duration: 173.1 (114.5) months. Median (IQR) delays from symptoms onset to both RA diagnosis and initial treatment coincided: 12 (6-36) months, with no significant delay between diagnosis and treatment. Most participants (64.6%) first sought a general practitioner. Notwithstanding, 80.7% had the diagnosis established only by the rheumatologist. Only a minority (28.7%) attained early RA treatment (≤ 6 months of symptoms). Diagnostic and treatment delays were strongly correlated (rho 0.816; p < 0.001). The chances of missing early treatment more than doubled when the assessment by the rheumatologist was belated (OR 2.77; 95% CI: 1.93, 3.97). After long disease duration, late-assessed participants still presented lower chances of remission/low disease activity (OR 0.74; 95% CI: 0.55, 0.99), while the early-assessed ones showed better DAS28-CRP and HAQ-DI scores (difference in means [95% CI]: -0.25 [-0.46, -0.04] and - 0.196 [-0.306, -0.087] respectively). The results in the propensity-score matched subsample confirmed those observed in the original (whole) sample. CONCLUSIONS: Early diagnosis and treatment initiation in patients with RA was critically dependent on early access to the rheumatologist; late specialized assessment was associated with worse long-term clinical outcomes.

Creativity at the margins: A cross-country case study on how Dutch and Norwegian peripheries address challenges to quality work in care for older persons.

BACKGROUND: Peripheral areas are often overlooked in health-care research but they in fact deserve specific attention. Such areas struggle to maintain access to good quality health-care services due to their geographical context. At the same time, new interventions or promising innovations often emerge in places where creativity is urgently needed. In this paper, we explore this creativity at the margins in older persons care organizations in peripheral areas, which other healthcare providers and policymakers can learn from. METHODS: This exploratory study is based on two large research projects on the quality of care for older persons in Norway and the Netherlands. We performed secondary analysis of interviews with quality managers and other quality workers and used additional document analysis and expert interviews to deepen our analysis. RESULTS: The results show that older persons care organizations working in peripheral areas must deal with a number of challenges caused by their geographical context, e.g. geographical distances (between services and to the geographical center), workforce shortages, and landscape characteristics. We found that organizations use different strategies to tackle these challenges, such as scaling up, brightening up and opening up. These strategies, conceptualized as creativity at the margins, impact quality work in different ways, for example by enabling more person-centered care. CONCLUSION: We conclude that both policymakers and research should overcome their peripheral blindness by learning from and supporting creativity at the margins in future policies and research.

Interruption of breast cancer care and importance of inter-hospital cooperation during the COVID-19 pandemic: A case report of advanced breast cancer in Fukushima, Japan.

We experienced the case of a patient with advanced breast cancer who failed to receive comprehensive care despite regular video conferencing with her physician during the COVID-19 pandemic, resulting in delayed detection of liver metastasis. Inter-hospital collaboration is required to provide uninterrupted cancer care to those disproportionately affected by crises.