Title: Uncertainty in healthcare: a qualitative study of patients' and clinicians' experiences and co-design of professional development and patient information materials
Funder: Dunhill Medical Trust

Abstract: BACKGROUND Uncertainty occurs when it is unclear from existing information/evidence how treatments may affect an individual in their unique circumstances. It is ubiquitous within healthcare decision-making, spanning diagnosis, prognosis, treatment choice; practical access to care; and individual impact. A recent systematic review (Strout et al., 2018) highlighted a lack of robust evidence about the influence of uncertainty on health, healthcare, and healthcare education outcomes; although adverse impacts on patient wellbeing (Kazer et al., 2013, Ogden et al., 2002), shared decision-making (Parascandola et al., 2002) and patient satisfaction (Politi et al., 2011) are recognised. In older people, frailty, multimorbidity, polypharmacy and the need for shared, person-centred decision-making increase uncertainty. Common scenarios include decisions near the end-of-life (when priorities may differ), when patients lack capacity and when evidence/guidelines are lacking, contradictory, narrowly disease-focused or inapplicable. PURPOSE This study will explore patient-clinician interactions in uncertain situations (a current evidence gap) and the influence of wider features of health systems and the care environment. Co-design will prepare specifications for professional education and patient information interventions, laying foundations for future work. THEORETICAL APPROACH This study uses an integrative model of tolerance of uncertainty (Hillen et al., 2017) and taxonomy of uncertainty (Han et al., 2011) and will develop a more ‘interactional’ understanding, recognizing that clinicians and patients influence each other’s uncertainty. Adult (Knowles, 1984), experiential (Kolb, 2014) and situated (Lave and Wenger, 1991) learning theories will inform co-design. A theoretical review is provided as supporting information. SETTING East Midlands (Health Education England catchment); population 4.5 million METHODS Following an initial scoping review, we are preparing a narrative synthesis (WP0) as preparatory work for this study. WP1: Semi-structured interviews (18 case studies) will explore uncertainty within clinical encounters. Doctors and patients will be interviewed separately about the same clinical encounter. If patients agree, carers will also be invited to contribute. WP2: Vignettes will be developed from WP1 to illustrate typical scenarios involving uncertainty (Evans et al., 2015). WP3: Focus groups (3 of 6 patients/carers; 3 of 6 doctors-in-training) will discuss how to improve professional development and patient/carer information from personal experience and vignettes (WP2); and explore the influence and scope for improvement in health systems and the care environment to meet the needs of older people facing uncertainty. WP4: Experience-based co-design workshop (Bate and Robert, 2006) will bring together patients, clinicians and other stakeholders to prepare detailed specifications for educational and patient information materials.

Lay abstract: Older people want to be involved in decisions about their care and need information to make informed decisions. However, it is often difficult to predict how particular treatments might affect individuals in their unique circumstances. This is especially true when people have multiple medical problems or take several medications. Sometimes, there may be gaps in the scientific evidence used to make decisions; or it might be difficult to relate this evidence to each person’s own unique wishes, values and priorities. This is known as ‘uncertainty’ and is something which challenges patients, carers and professionals alike. Uncertainty may leave patients and carers feeling excluded, unsupported and distanced; and it is recognized that doctors may not have the skill set to address these issues. Our research aims to improve patient and carer involvement in decision-making in uncertain situations and to reduce the anxiety and other negative consequences of these situations. The project has four stages: 1. Interviews with patients, carers and doctors (separately) to understand their experience of a consultation in which there was uncertainty. By asking each participant about the same encounter, we will better understand how these interactions work. This is an important gap in our scientific understanding of uncertainty. 2. Preparing vignettes which are typical ‘stories’ of uncertain situations, allowing patients and professionals to relate to uncertainty. 3. Holding focus groups with patients, carers and doctors in training to ask about training for professionals and information for patients; and identify other issues which may affect patient experience in uncertain situations (e.g. the environment in surgeries, clinics and hospitals). 4. We will bring together patients, doctors and others to design specifications for professional development and patient information materials to help patients, clinicians and professionals in uncertain situations. Following this study, we aim to develop and evaluate these training and patient information materials. For these to be effective, we need to understand uncertainty from the perspectives of multiple users: patients, carers, healthcare professionals, educators, and those working within the acute and primary care settings. We will also use many different ways to inform patients, carers, professionals and managers about what our research has found and importantly, how this can help them. This study has been developed with the Leicestershire Older Persons’ Patient and Public Involvement (PPI) forum. Our project team includes a lay co-applicant and we will continue regular consultation with PPI and advisory groups (including patient representatives) throughout the study.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING;7.1 INDIVIDUAL CARE NEEDS
Health categories: GENERIC HEALTH RELEVANCE