Identifying patient-important practical issues for shared decision-making

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (6)

Date: 

Monday 17 September 2018 - 14:20 to 14:40

Location: 

Sidlaw Auditorium

All authors in correct order:

Heen AF1, Vandvik PO1, Montori V2, Lloyd A3, Lytvyn L4, Agoritsas T5
1 Department of Medicine, Innlandet Hospital Trust, Gjøvik, Norway
2 Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, Minnesota, USA
3 Centre for Trials Research, College of Biomedical & Life Sciences, Cardiff University, Cardiff, UK
4 Department of Clinical Epidemiology and Biostatistics, McMaster University, Faculty of Health Sciences, Hamilton, Ontario, Canada
5 Division of General Internal Medicine, Department of Internal medicine, Rehabilitation and Geriatrics, University Hospitals of Geneva, Geneva, Switzerland
Presenting author and contact person

Presenting author:

Anja Fog Heen

Contact person:

Anja Fog Heen
Abstract text
Background:
To help patients and clinicians engage in collaborative deliberation, tools for shared decision-making (SDM) usually include evidence on the nature and likelihood of patient-important outcomes associated with management alternatives. However, patients face practical issues when implementing the chosen option in their daily life. Evidence summaries typically include the former but overlook the latter.

Objectives:
To map and categorise patient-important practical issues related to treatment options and develop a generic framework for their incorporation into SDM tools.

Methods:
We systematically reviewed and mapped two main sources (HealthTalk.org registry and Option Grids), which included a large sample of conditions and applied a rigorous methodology in identifying patient experience and questions. We systematically screened every topic, abstracting all practical issues relevant to management options. Two independent reviewers grouped the issues into themes, compared results, resolved discrepancies and arrived at final a set of themes. We tested the applicability of this framework in identifying specific practical issues when creating 14 SDM tools using the SHARE-IT method.

Results:
Thematic analysis identified 15 categories from 967 issues across 297 topics in HealthTalk.org and 29 Option Grids: five care-related (medication routine, tests and visits, procedure and device, recovery and adaptation, co-ordination of care); five related to daily life (food and drink, exercise and activities, social life and relationships, work and education, travel and driving); and five related to miscellaneous issues (adverse effects, interactions and antidote, physical well-being, emotional well-being, pregnancy and nursing, costs and access). In creating 18 SDM tools on anti-thrombotic therapy and chemotherapy all categories were applicable and used.

Conclusions:
We identified 15 overarching themes of patient-important practical issues. This generic framework can complement trustworthy evidence summaries from systematic reviews and thus help create tools that are more helpful when discussing with patients the issues that matter to them.

Patient or healthcare consumer involvement:
Patients have been involved in the iterative process of developing the framework for practical issues and their feedback is important for further iterations.

Relevance to patients and consumers: 

We have created a generic framework of 15 domains of patient-important practical issues related to treatment options integrated with encounter decision aids to be used at the point of care. The objective of this is to facilitate the conversation between patient and doctor to discover what is best for each patient in the context of shared decision making and trustworthy guidelines and recommendations. This can lead to patients and clinicians together finding treatment options better suited for that individual patient, and be a step closer o true shared decision making.