Introduction: First Nations are most at risk of developing end-stage kidney disease. Kidney transplantation is the best treatment option for these patients; however, First Nations donors are underrepresented. The aim of this study was to describe and understand barriers and facilitators of culturally safe organ transplantation and donation from the perspective of First Nations and Health Professionals in the Province of Quebec, Canada. Methods/Approach: This was a qualitative descriptive study using the decolonizing Two-Eyed Seeing approach. The sample consisted of First Nations people and health professionals living in Quebec, Canada, who have had an experience of organ transplantation or donation. Semi-structured interviews were conducted between May and September 2021 with 11 people, including 5 healthcare professionals and 6 First Nations people. Findings: This study enrolled 11 participants. Several individual and contextual factors influencing culturally safe organ transplantation and donation among First Nations people were identified: language barrier, impacts of relocation, lack of knowledge about transplantation, mistrust of the healthcare system, family support and accompaniment, and transplant testimonials. Discussion: This study identified several avenues for reinforcing culturally safe transplantation and donation among First Nations, including the presence of a companion in medical consultations, focusing on access to culturally safe accommodation and sharing transplant testimonials. Further work in partnership with First Nations is needed to improve access to culturally safe organ transplantation.

OBJECTIVE: To investigate changes in well-being measures for older Māori after moving from community to long-term care (LTC).
METHODS: We undertook a retrospective cohort study of older Māori in New Zealand (NZ) who had received assessments for their health needs whilst living at home (interRAI-HC assessment) as well as a subsequent assessment after moving into a care facility (interRAI-LTCF). All interRAI-HC assessments from 01 July 2013 to 21 December 2018 were identified and matched to LTCF assessments that were undertaken at least 6 months later. Odds ratios (OR) and 95% confidence interval (CI) were calculated to determine the difference in proportion of variables of interest (indicative of movement, socialising, sleep and nutrition, alongside general physical and mental health status) between participants\' HC and subsequent LTCF assessments.
RESULTS: Changes in well-being measures were investigated among 1531 Māori (mean age 76.2 years, 61% female). Odds of having a fall (OR: 0.40 [95% CI 0.34, 0.48]), being lonely (OR: 0.13 [95% CI 0.09, 0.18]), sleeping difficulty (OR: 0.74 [95% CI 0.60, 0.91]) and fatigue (OR: 0.18 [95% CI 0.14, 0.23]) reduced on moving to LTC. However, the presence of depression (OR 3.96 [95% CI 2.58, 6.09]) and dependence with locomotion (OR 1.56 [95% CI 1.23, 1.97]) significantly increased when moving from home to LTC.
CONCLUSIONS: Despite some indicators of functional and health-related decline, significant improvements are also apparent across multiple domains of well-being. Further investigation of resident and family perceptions of well-being in association with a move to LTC is warranted.

BACKGROUND: Case management (CM) is among the most studied effective models of integrated care for people with complex needs. The goal of this study is to scale up and assess CM in primary healthcare for people with complex needs.
METHODS: The research questions are: (1) which mechanisms contribute to the successful scale-up of CM for people with complex needs in primary healthcare?; (2) how do contextual factors within primary healthcare organisations contribute to these mechanisms? and (3) what are the relationships between the actors, contextual factors, mechanisms and outcomes when scaling-up CM for people with complex needs in primary healthcare? We will conduct a mixed methods Canadian interprovincial project in Quebec, New-Brunswick and Nova Scotia. It will include a scale-up phase and an evaluation phase. At inception, a scale-up committee will be formed in each province to oversee the scale-up phase. We will assess scale-up using a realist evaluation guided by the RAMESES checklist to develop an initial programme theory on CM scale-up. Then we will test and refine the programme theory using a mixed-methods multiple case study with 10 cases, each case being the scalable unit of the intervention in a region. Each primary care clinic within the case will recruit 30 adult patients with complex needs who frequently use healthcare services. Qualitative data will be used to identify contexts, mechanisms and certain outcomes for developing context-mechanism-outcome configurations. Quantitative data will be used to describe patient characteristics and measure scale-up outcomes.
BACKGROUND: Ethics approval was obtained. Engaging researchers, decision-makers, clinicians and patient partners on the study Steering Committee will foster knowledge mobilisation and impact. The dissemination plan will be developed with the Steering Committee with messages and dissemination methods targeted for each audience.

OBJECTIVE: Data on the population-based epidemiology of hyperhidrosis (HH) are scarce. This study investigated the epidemiology and healthcare of HH in Germany.
METHODS: Claims data of adult persons insured by a German statutory health insurance (DAK-Gesundheit) between 2016 and 2020 were analysed. Included were persons aged 18 years and older with a diagnosis of HH (confirmed inpatient or outpatient diagnosis in the observation year) who were continuously insured. Following outcomes were measured: prevalence and incidence rates, severity of hyperhidrosis and inpatient and outpatient care by a group of specialists.
RESULTS: In 2020, 0.70% of insured adults were confirmed to have HH (mean age 59.5 years, SD 18.9, 61.6% female), with 9.24% having a \'localised\' form, 8.65% a \'generalised\' form and 84.80% an \'unspecified\' form. 0.04% of the total population had a severe form. The incidence was 0.35%. Localised HH was more common in younger age groups (18 to <30 years), while older age groups (70 to <80 years) were significantly more likely to suffer from generalised HH. Systemic anticholinergics were used in 4.55%, and botulinum toxin injection therapy in 0.81%. General practitioners were most frequently involved in care. Inpatient stays due to HH were very rare, with 0.14% in 2019 and 0.04% in 2020.
CONCLUSIONS: Multisource data analysis connecting primary and secondary data will be needed for a complete picture of the healthcare and epidemiology of HH.

BACKGROUND: The International Society of Paediatric Oncology Society Global Mapping Program aims to describe the local pediatric oncology capacities. Here, we report the data from Latin America.
METHODS: A 10-question survey was distributed among chairs of pediatric oncology services. Centers were classified according to patient volume into high- (HVC; 100 or more new cases per year), medium- (MVC; 31-99 cases), and low-volume centers (LVC; 30 cases or less), respectively. National referral centers (NRC) were identified.
RESULTS: Total 307 centers in 20 countries were identified (271 responded), and 264 responses were evaluable, accounting for 78% of the expected cases (21,359 cases per year). Seventy-seven percent of patients are treated in public centers, including additional support by civil society organizations. We found that 66% of the patients are treated in 70 centers of excellence, including 21 NRC. There was a median of one pediatric oncologist every 21 newly diagnosed patients (44 for NRC), and in 84% of the centers, nurses rotated to other services. A palliative care team was lacking in 25% of the centers. LVC with public funding have significantly lower probability of having a palliative care team or trained pediatric oncology surgeons. Psychosocial, pharmacy, and nutrition services were available in more than 93% of the centers. No radiotherapy facility was available on campus in nine of 21 NRC.
CONCLUSIONS: Most children with cancer in Latin America are treated in public HVC. There is a scarcity of pediatric oncologists, specialized nurses and surgeons, and palliative care teams, especially in centers with public funding.

BACKGROUND: There is a growing emphasis on the importance of the availability of specialist palliative care for people with motor neuron disease (MND). However, the palliative care needs of this population and the utilisation of different specialist services remain poorly defined.
OBJECTIVE: To (1) describe clinical characteristics, symptom burden and functional levels of patients dying with MND on their admission to palliative care services; (2) determine factors associated with receiving inpatient or community palliative care services.
METHODS: An observational study based on point-of-care assessment data from the Australian Palliative Care Outcomes Collaboration.
METHODS: A total of 1308 patients who received palliative care principally because of MND between 1 January 2013 and 31 December 2020.
METHODS: Five validated clinical instruments were used to assess each individual\'s function, distress from symptoms, symptom severity and urgency and acuity of their condition.
RESULTS: Most patients with MND had no or mild symptom distress, but experienced a high degree of functional impairment. Patients who required \'two assistants for full care\' relative to those who were \'independent\' (OR=11.53, 95% CI: 4.87 to 27.26) and those in \'unstable\' relative to \'stable\' palliative care phases (OR=16.74, 95% CI: 7.73 to 36.24) were more likely to use inpatient versus community-based palliative care. Associations between the use of different palliative care services and levels of symptom distress were not observed in this study.
CONCLUSIONS: Patients with MND were more likely to need assistance for decreased function and activities of daily living, rather than symptom management. This population could have potentially been cared for in the palliative phase in a community setting if greater access to supportive services were available in this context.

OBJECTIVE: To describe a new co-design framework termed Evidence-informed, Experience-based Co-design (E2CD).
BACKGROUND: Involving consumers and clinicians in planning, designing and implementing services results in the end-product being more likely to meet the needs of end-users and increases the likelihood of their uptake and sustainability. Different forms and definitions of co-design have been described in the literature and have had varying levels of success in health service redesign. However, many fall short of including people with lived experience in all aspects of the process, particularly in setting priorities for service (re)design. In addition, health services need to deliver evidence-based care as well as care that meets the needs of users, yet few ways of integrating research evidence into co-design processes are described. This paper describes a new framework to approach co-design which addresses these issues. We believe that it offers a roadmap to address some of healthcare\'s most wicked problems and potentially improve outcomes for some of the most vulnerable people in our society. We use improving services for people with high healthcare service utilisation as a working example of the Framework\'s application.
CONCLUSIONS: Evidence-informed experience-based co-design has the potential to be used as a framework for co-design that integrates research evidence with lived experience and provides people with lived experience a central role in decision-making about prioritising and designing services to meet their needs.

OBJECTIVE: To evaluate the effects of Medicaid Accountable Care Organizations (ACOs) on children\'s access to and utilization of health services.
METHODS: This study employs difference-in-differences models comparing ACO and non-ACO states from 2018 through 2021. Access measures are indicators for preventive and sick care sources, unmet healthcare needs, and having a personal doctor or nurse. Utilization measures are preventive and dental care, mental healthcare, specialist visits, emergency department visits, and hospital admissions.
UNASSIGNED: Secondary, de-identified data come from the 2016-2021 National Survey of Children\'s Health. The sample includes children with public insurance and ranges between 21,452 and 37,177 depending on the outcome.
RESULTS: Medicaid ACO implementation was associated with an increase in children\'s likelihood of having a personal doctor or nurse by about 4 percentage-points concentrated among states that implemented ACOs in 2018. Medicaid ACOs were also associated with an increase in specialist care use and decline in emergency visits by about 5 percentage-points (the latter being concentrated among states that implemented ACOs in 2020). There were no discernable or robust associations with other pediatric outcomes.
CONCLUSIONS: There is mixed evidence on the associations of Medicaid ACOs with pediatric access and utilization outcomes. Examining effects over longer periods post-ACO implementation is important.

BACKGROUND: Tuberculosis (TB) infectiousness decreases significantly with only a few days of treatment, but delayed diagnosis often leads to late treatment initiation. We conducted a sequential explanatory mixed methods study to understand the barriers and facilitators to prompt diagnosis among people with TB.
METHODS: We enrolled 100 adults who started TB treatment in the Carabayllo district of Lima, Peru, between November 2020 and February 2022 and administered a survey about their symptoms and healthcare encounters. We calculated total diagnostic delay as time from symptom onset to diagnosis. We conducted semi-structured interviews of 26 participants who had a range of delays investigating their experience navigating the health system. Interview transcripts were inductively coded for concepts related to diagnostic barriers and facilitators.
RESULTS: Overall, 38% of participants sought care first from public facilities and 42% from the private sector. Only 14% reported being diagnosed with TB on their first visit, and participants visited a median of 3 (interquartile range [IQR] health facilities before diagnosis. The median total diagnostic delay was 9 weeks (interquartile range [IQR] 4-22), with a median of 4 weeks (IQR 0-9) before contact with the health system and of 3 weeks (IQR 0-9) after. Barriers to prompt diagnosis included participants attributing their symptoms to an alternative cause or having misconceptions about TB, and leading them to postpone seeking care. Once connected to care, variations in clinical management, health facility resource limitations, and lack of formal referral processes contributed to the need for multiple healthcare visits before obtaining a diagnosis. Facilitators to prompt diagnosis included knowing someone with TB, supportive friends and family, referral documents, and seeing a pulmonologist.
CONCLUSIONS: Misinformation about TB among people with TB and providers, poor accessibility of health services, and the need for multiple encounters to obtain diagnostic tests were major factors leading to delays. Extending the hours of operation of public health facilities, improving community awareness and provider training, and creating a formal referral process between the public and private sectors should be priorities in the efforts to combat TB.

OBJECTIVE: The main objective of this study was twofold: to investigate what kind of information patients with heart failure (HF) tell their doctors about their medication adherence at home, and how often such information is provided in consultations where medication reconciliation is recommended. To meet these objectives, we developed an analysis to recognise, define, and count (1) patient utterances including medication adherence disclosures in clinical interactions (MADICI), (2) MADICI including red-flags for non-adherence, and (3) MADICI initiated by patients without prompts from their doctor.
METHODS: Exploratory interaction-based observational cohort study. Inductive microanalysis of authentic patient-doctor consultations, audio-recorded at three time-points for each patient: (1) first ward visit in hospital, (2) discharge visit from hospital, and (3) follow-up visit with general practitioner (GP).
METHODS: Norway (2022-2023).
METHODS: 25 patients with HF (+65 years) and their attending doctors (23 hospital doctors, 25 GPs).
RESULTS: We recognised MADICI by two criteria: (1) they are about medication prescribed for use at home, AND (2) they involve patients\' action, experience, or stance regarding medications. Using these criteria, we identified 427 MADICIs in 25 patient trajectories: 143 (34%) at first ward visit (min-max=0-35, median=3), 57 (13%) at discharge visit (min-max=0-8, median=2), 227 (53%) at GP-visit (min-max=2-24, median=7). Of 427 MADICIs, 235 (55%) included red-flags for non-adherence. Bumetanide and atorvastatin were most frequently mentioned as problematic. Patients initiated 146 (34%) of 427 MADICIs. Of 235 \'red-flag MADICIs\', 101 (43%) were initiated by patients.
CONCLUSIONS: Self-managing older patients with HF disclosed information about their use of medications at home, often including red-flags for non-adherence. Patients who disclosed information that signals adherence problems tended to do so unprompted. Such disclosures generate opportunities for doctors to assess and support patients\' medication adherence at home.