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Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol

Por: Bernard · M. · Gamondi · C. · Sterie · A.-C. · Larkin · P. J. · Jox · R. · Borasio · G. D.
Introduction

In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context—by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts—advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3).

Methods and analysis

Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions.

Ethics and dissemination

The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Does use of GP and specialist services vary across areas and according to individual socioeconomic position? A multilevel analysis using linked data in Australia

Por: Butler · D. C. · Larkins · S. · Jorm · L. · Korda · R. J.
Objective

Timely access to primary care and supporting specialist care relative to need is essential for health equity. However, use of services can vary according to an individual’s socioeconomic circumstances or where they live. This study aimed to quantify individual socioeconomic variation in general practitioner (GP) and specialist use in New South Wales (NSW), accounting for area-level variation in use.

Design

Outcomes were GP use and quality-of-care and specialist use. Multilevel logistic regression was used to estimate: (1) median ORs (MORs) to quantify small area variation in outcomes, which gives the median increased risk of moving to an area of higher risk of an outcome, and (2) ORs to quantify associations between outcomes and individual education level, our main exposure variable. Analyses were adjusted for individual sociodemographic and health characteristics and performed separately by remoteness categories.

Setting

Baseline data (2006–2009) from the 45 and Up Study, NSW, Australia, linked to Medicare Benefits Schedule and death data (to December 2012).

Participants

267 153 adults aged 45 years and older.

Results

GP (MOR=1.32–1.35) and specialist use (1.16–1.18) varied between areas, accounting for individual characteristics. For a given level of need and accounting for area variation, low education-level individuals were more likely to be frequent users of GP services (no school certificate vs university, OR=1.63–1.91, depending on remoteness category) and have continuity of care (OR=1.14–1.24), but were less likely to see a specialist (OR=0.85–0.95).

Conclusion

GP and specialist use varied across small areas in NSW, independent of individual characteristics. Use of GP care was equitable, but specialist care was not. Failure to address inequitable specialist use may undermine equity gains within the primary care system. Policies should also focus on local variation.

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