Somebody who understands the culture and their needs that can cater for them in their retirement time: a peer research study exploring the challenges faced by British Muslims with palliative care needs during the COVID-19 pandemic

Background
Inequities in palliative and end-of-life care access exist, with evidence of lower uptake of these services among people from the British Muslim community. Little research exists exploring the experiences of British Muslims with palliative care needs and their families during the pandemic or before.

Aim
To coproduce peer research exploring the experiences of British Muslims with palliative care needs and their families during the COVID-19 pandemic.

Design
A collaborative peer research interview study. Peer researchers were recruited and trained to undertake qualitative interviewing. Data were analysed using reflective thematic analysis.

Setting/participants
3 peer researchers conducted 11 telephone interviews (10 in English and 1 in Urdu) between August and September 2021 with 12 participants (5 people with palliative care needs and 7 family carers).

Results
Four themes were identified: (1) issues in accessing healthcare exacerbated by the COVID-19 pandemic, (2) the impact on family carers, (3) variation in support from community groups and (4) social and information exclusion. The COVID-19 pandemic exacerbated existing challenges to accessing healthcare services for British Muslims with palliative care needs. Family members experienced the cumulative impact of supporting people with palliative needs while also advocating for and supporting them to access the care they required. Language barriers, digital exclusion and uncertainly about how to access information, in addition to the apparent lack of consideration of important festivals in the Muslim calendar in the implementation of policies around lockdowns, culminated in a sense of exclusion from COVID-19-related policies and messaging for this population.

Conclusions
These findings support the need to involve people from diverse backgrounds in the design and delivery of healthcare services and policies. Learning from this unique time in our histories should be used to shape future delivery of culturally aware and inclusive care.

Leggi
Agosto 2024

Palliative care needs and utilisation of specialist services for people diagnosed with motor neuron disease: a national population-based study

Introduction
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.

Objectives
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.

Design
An observational study based on point-of-care assessment data from the Australian Palliative Care Outcomes Collaboration.

Participants
A total of 1308 patients who received palliative care principally because of MND between 1 January 2013 and 31 December 2020.

Measures
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.

Leggi
Agosto 2024

Demographic and geographic distribution of diabetes and pre-diabetes risk in rural settings: results from a cross-sectional, countywide rural health survey in Sullivan County, New York

Objective
To perform a detailed characterisation of diabetes burden and pre-diabetes risk in a rural county with previously documented poor health outcomes in order to understand the local within-county distribution of diabetes in rural areas of America.

Design, setting, and participants
In 2021, we prospectively mailed health surveys to all households in Sullivan County, a rural county with the second-worst health outcomes of all counties in New York State. Our survey included questions on demographics, medical history and the American Diabetes Association’s Pre-diabetes Risk Test.

Primary outcome and methods
Our primary outcome was an assessment of diabetes burden within this rural county. To help mitigate non-response bias in our survey, raking adjustments were performed across strata of age, sex, race/ethnicity and health insurance. We analysed diabetes prevalence by demographic characteristics and used geospatial analysis to assess for clustering of diagnosed diabetes cases.

Results
After applying raking procedures for the 4725 survey responses, our adjusted diagnosed diabetes prevalence for Sullivan County was 12.9% compared with the 2019 Behavioural Risk Factor Surveillance System (BRFSS) estimate of 8.6%. In this rural area, diagnosed diabetes prevalence was notably higher among non-Hispanic Black (21%) and Hispanic (15%) residents compared with non-Hispanic White (12%) residents. 53% of respondents without a known history of pre-diabetes or diabetes scored as high risk for pre-diabetes. Nearest neighbour analyses revealed that hotspots of diagnosed diabetes were primarily located in the more densely populated areas of this rural county.

Conclusions
Our mailed health survey to all residents in Sullivan County demonstrated higher diabetes prevalence compared with modelled BRFSS estimates that were based on small telephone samples. Our results suggest the need for better diabetes surveillance in rural communities, which may benefit from interventions specifically tailored for improving glycaemic control among rural residents.

Leggi
Agosto 2024

Timely integration of specialist palliative home care (SPHC) for patients with congestive heart failure, chronic obstructive pulmonary disease and dementia: qualitative evaluation of the experiences of SPHC physicians in the KOPAL trial

Objective
Chronic non-malignant diseases (CNMDs) are under-represented in specialist palliative home care (SPHC). The timely integration of SPHC for patients suffering from these diseases can reduce hospitalisation and alleviate symptom burdens. An intervention of an SPHC nurse–patient consultation followed by an interprofessional telephone case conference with the general practitioner (GP) was tested in the KOPAL trial (‘Concept for strengthening interprofessional collaboration for patients with palliative care needs’). As part of the trial, the aim of this study was to gain in-depth insights into SPHC physicians’ perspective on care with and without the KOPAL intervention for patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and dementia (D).

Design
Qualitative evaluation of the KOPAL intervention from the perspective of SPHC physicians as part of the KOPAL trial. Thematic-focused narrative interviews analysed with grounded theory.

Setting
We conducted the KOPAL study and its qualitative evaluation in Lower Saxony and the greater Hamburg area, Germany.

Participants
11 physicians from 14 SPHC teams who participated in the trial were interviewed.

Results
A grounded theory of the necessity of collaboration between GPs and SPHC teams for patients with CHF, COPD and dementia was developed. From the perspective of SPHC physicians, patients with CNMD are generally difficult to manage in GP care. The timing of SPHC initiation is patient-specific, underscoring the need for collaboration between SPHC physicians and GPs. However, the primary mandate for healthcare should remain with GPs. SPHC physicians actively seek collaboration with GPs (eg, through the KOPAL intervention), viewing themselves as advisors for GPs and aspiring to collaborate as equal partners.

Conclusion
Effective communication and the negotiation of future interprofessional collaboration are essential for SPHC teams.

Trial registration number
DRKS00017795.

Leggi
Luglio 2024

Exploring barriers and enabling factors for surgical task sharing with physician assistants in Liberia: a qualitative pre-implementation study

Objectives
This study explores potential barriers and enabling factors that may influence the acceptance of implementation of a surgical task-sharing initiative targeting physician assistants (PAs) in Liberia.

Design
A qualitative, pre-implementation study using semistructured interviews. Data was analysed in NVivo V.12 using deductive coding and the consolidated framework for implementation research as a guide.

Setting
Liberia has few surgical providers and a poor surgical infrastructure resulting in a very low surgical volume. The research was conducted in the context of an already running surgical task-sharing programme for midwives.

Participants
In 2019, a total of 30 key stakeholders in the field of surgery and the PAs training programme were interviewed.

Results
The majority of the stakeholders supported the idea of training PAs in surgery. The high unemployment rate among PAs and the need for career advancement of this cadre were important enabling factors. Resistance against surgical task sharing for mid-level clinicians is multifaceted. The Ministry of Health (MOH) did not share a common vision. Opponents within the MOH believed budgetary constraints within the MOH and the lack of surgical infrastructure is a more pressing problem compared with the surgically trained human resources. Another important group of opponents are medical officers (MOs) and their professional bodies. Many of their negative beliefs around surgical task sharing reflect lessons to be drawn from the current surgical training programme for midwives.

Conclusion
Prior to deciding on implementation of a surgical training programme for PAs, wider support is needed. If surgical task sharing with PAs is to be considered, the intervention should focus on adapting the ‘adaptable’ periphery of the intervention to broaden the support of the MOH, MOs and their professional bodies. Failing to obtain such support should make the implementors consider alternative strategies to strengthen surgical human resources in rural Liberia.

Leggi
Luglio 2024

Effects of pre-existing type 1 diabetes mellitus on survival outcome following out-of-hospital cardiac arrest: a registry-based observational study in Sweden

Background
It has been estimated that 80% of cases of out-of-hospital cardiac arrest (OHCA) are due to cardiac causes. It is well-documented that diabetes is a risk factor for conditions associated with sudden cardiac arrest. Type 1 diabetes (T1D) displays a threefold to fivefold increased risk of cardiovascular disease and death compared with the general population.

Objective
This study aims to assess the characteristics and survival outcomes of individuals with and without T1D who experienced an OHCA. Design: A registry-based nationwide observational study with two cohorts, patients with T1D and patients without T1D. Setting: All emergency medical services and hospitals in Sweden were included in the study.

Participants
Using the Swedish Cardiopulmonary Resuscitation Registry, we enrolled 54 568 cases of OHCA where cardiopulmonary resuscitation was attempted between 2010 and 2020. Among them, 448 patients with T1D were identified using International Classification of Diseases-code: E10.

Methods
Survival analysis was performed using Kaplan-Meier and logistic regression. Multiple regression was adjusted for age, sex, cause of arrest, prevalence of T1D and time to cardiopulmonary resuscitation.

Main outcome measures
The outcomes were discharge status (alive vs dead), 30 days survival and neurological outcome at discharge.

Results
There were no significant differences in patients discharged alive with T1D 37.3% versus, 46% among cases without T1D. There was also no difference in neurological outcome. Kaplan-Meier curves yielded no significant difference in long-term survival. Multiple regression showed no significant association with survival after accounting for covariates, OR 0.99 (95% CI 0.96 to 1.02), p value=0.7. Baseline characteristics indicate that patients with T1D were 5 years younger at OHCA occurrence and had proportionally fewer cases of heart disease as the cause of arrest (57.6% vs 62.7%).

Conclusion
We conclude, with the current sample size, that there is no statistically significant difference in long-term or short-term survival between patients with and without T1D following OHCA.

Leggi
Luglio 2024

Same-visit hepatitis C testing and treatment to accelerate cure among people who inject drugs (the QuickStart Study): a cluster randomised cross-over trial protocol

Introduction
Despite universal access to government-funded direct-acting antivirals (DAAs) in 2016, the rate of hepatitis C treatment uptake in Australia has declined substantially. Most hepatitis C is related to injecting drug use; reducing the hepatitis C burden among people who inject drugs (PWID) is, therefore, paramount to reach hepatitis C elimination targets. Increasing DAA uptake by PWID is important for interrupting transmission and reducing incidence, as well as reducing morbidity and mortality and improving quality of life of PWID and meeting Australia’s hepatitis C elimination targets.

Methods and analysis
A cluster randomised cross-over trial will be conducted with three intervention arms and a control arm. Arm A will receive rapid hepatitis C virus (HCV) antibody testing; arm B will receive rapid HCV antibody and rapid RNA testing; arm C will receive rapid HCV antibody testing and same-day treatment initiation for HCV antibody-positive participants; the control arm will receive standard of care. The primary outcomes will be (a) the proportion of participants with HCV commencing treatment and (b) the proportion of participants with HCV achieving cure. Analyses will be conducted on an intention-to-treat basis with mixed-effects logistic regression models.

Ethics and dissemination
The study has been approved by the Alfred Ethics Committee (number HREC/64731/Alfred-2020-217547). Each participant will provide written informed consent. Reportable adverse events will be reported to the reviewing ethics committee. The findings will be presented at scientific conferences and published in peer-reviewed journals.

Trial registration number
NCT05016609.

Trial progression
The study commenced recruitment on 9 March 2022 and is expected to complete recruitment in December 2024.

Leggi
Luglio 2024