Understanding how shared decision‐making approaches and patient aids influence patients with advanced cancer when deciding on palliative treatments and care: A realist review

Review

Author: Seddon, Kathy ; Longo, Mirella ; Nelson, Annmarie ; Holland-Hart, Daniella ; Mann, Mala ; Byrne, Anthony ; Edwards, Michelle ; Buckle, Peter

AbstractBackgroundPatients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision‐aids and shared decision‐making (SDM) approaches that influence patient outcomes.MethodsWe used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory.ResultsFrom the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret.ConclusionsOur programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer.Patient and Public ContributionWe included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research.

01 Aug 2023·Thrombosis Research

Towards optimal use of antithrombotic therapy of people with cancer at the end of life: A research protocol for the development and implementation of the SERENITY shared decision support tool

Article

Author: Søgaard, M ; Skjøth, F ; Gava, A ; Murtagh, F E M ; Calvetti, A ; Juffermans, C C M ; Sexton, K ; Vassal, P ; Jørgensen, L ; Gregory, C ; Konstantinides, S ; Greenley, S ; van der Linden, Y M ; Geersing, G J ; Nelson, A ; van Vliet, L M ; Goedegebuur, J ; Couffignal, C ; Cannegieter, S C ; Højen, A A ; Nielsen, P B ; Kruip, M J H A ; Bergmeijer, B ; Mooijaart, S P ; Sivell, S ; Accassat, S ; Rasmussen, K ; Schippers, I ; Ørskov, M ; Klok, F A ; Kroder, A F ; Baddeley, E ; Bertoletti, L ; Visser, C ; Seddon, K ; van Mens, T E ; Mahé, I ; Jacobsen, S ; Trompet, S ; Geijteman, E C T ; Maiorana, L ; Lafaie, L ; Mayeur, D ; Wilson, E ; Abbel, D ; Poenou, G ; Mohr, K ; Bax, J J ; Achterberg, W P ; Martens, E S L ; Blom, J W ; Enggaard, H ; Kempers, E K ; Jagosh, J ; Font, C ; van den Hout, W B ; Becker, D ; Noble, S I R ; Johnson, M J ; Hoffmann, I ; Gussekloo, J ; Edwards, M ; Ording, A G ; Akbari, A ; Edwards, A ; Coma-Auli, N ; Raczkiewicz, D ; Maraveyas, A ; Castro, L ; Chavannes, N H ; Huisman, M V ; Portielje, J E A ; Trinks-Roerdink, E ; Larsen, T B ; Szmit, S ; Arfuch, V M ; Pearson, M ; Langendoen, J W ; Lifford, K

BACKGROUNDEven though antithrombotic therapy has probably little or even negative effects on the well-being of people with cancer during their last year of life, deprescribing antithrombotic therapy at the end of life is rare in practice. It is often continued until death, possibly resulting in excess bleeding, an increased disease burden and higher healthcare costs.METHODSThe SERENITY consortium comprises researchers and clinicians from eight European countries with specialties in different clinical fields, epidemiology and psychology. SERENITY will use a comprehensive approach combining a realist review, flash mob research, epidemiological studies, and qualitative interviews. The results of these studies will be used in a Delphi process to reach a consensus on the optimal design of the shared decision support tool. Next, the shared decision support tool will be tested in a randomised controlled trial. A targeted implementation and dissemination plan will be developed to enable the use of the SERENITY tool across Europe, as well as its incorporation in clinical guidelines and policies. The entire project is funded by Horizon Europe.RESULTSSERENITY will develop an information-driven shared decision support tool that will facilitate treatment decisions regarding the appropriate use of antithrombotic therapy in people with cancer at the end of life.CONCLUSIONSWe aim to develop an intervention that guides the appropriate use of antithrombotic therapy, prevents bleeding complications, and saves healthcare costs. Hopefully, usage of the tool leads to enhanced empowerment and improved quality of life and treatment satisfaction of people with advanced cancer and their care givers.

01 Apr 2023·Palliative Medicine

‘Sadly I think we are sort of still quite white, middle-class really’ – Inequities in access to bereavement support: Findings from a mixed methods study

Article

Author: Sutton, Eileen ; Penny, Alison ; Seddon, Kathy ; Murray, Karl ; Stone, Tracey ; Longo, Mirella ; Gilbert, Emma ; Medeiros Mirra, Renata ; Wakefield, Donna ; Rolston, Yansie ; Selman, Lucy E ; Byrne, Anthony ; Harrop, Emily ; Mayland, Catriona R

Background: Voluntary and community sector bereavement services are central to bereavement support in the UK. Aim: To determine service providers’ perspectives on access to their support before and during the COVID-19 pandemic. Design: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. Settings/participants: 147 services participated in the survey; 24 interviews were conducted across 14 services. Results: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. Conclusions: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research.

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