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

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

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

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