Beyond pros and cons – developing a patient decision aid to cultivate dialog to build relationships: insights from a qualitative study and decision aid development

Abstract

Background An individualized approach using shared decision-making (SDM) and goal setting is a person-centred strategy that may facilitate prioritization of treatment options. SDM has not been adopted extensively in clinical practice. An interprofessional approach to SDM with tools to facilitate patient participation may overcome barriers to SDM use. The aim was to explore decision-making experiences of health professionals and people with diabetes (PwD), then develop an intervention to facilitate interprofessional shared decision-making (IP-SDM) and goal-setting. Methods This was a multi-phased study. 1) Feasibility: Using a descriptive qualitative study, individual interviews with primary care physicians, nurses, dietitians, pharmacists, and PwD were conducted. The interviews explored their experiences with SDM and priority-setting, including facilitators and barriers, relevance of a decision aid for priority-setting, and integration of SDM and a decision aid into practice. 2) Development: An evidence-based SDM toolkit was developed, consisting of an online decision aid, MyDiabetesPlan, and implementation tools. MyDiabetesPlan was reviewed by content experts for accuracy and comprehensiveness. Usability assessment was done with 3) heuristic evaluation and 4) user testing, followed by 5) refinement. Results Seven PwD and 10 clinicians participated in the interviews. From interviews with PwD, we identified that: (1) approaches to decision-making were diverse and dynamic; (2) a trusting relationship with the clinician and dialog were critical precursors to SDM; and, (3) goal-setting was a dynamic process. From clinicians, we found: (1) complementary (holistic and disease specific) approaches to the complex patient were used; (2) patient-provider agendas for goal-setting were often conflicting; (3) a flexible approach to decision-making was needed; and, (4) conflict could be resolved through SDM. Following usability assessment, we redesigned MyDiabetesPlan to consist of data collection and recommendation stages. Findings were used to finalize a multi-component toolkit and implementation strategy, consisting of MyDiabetesPlan, instructional card and videos, and orientation meetings with participating patients and clinicians. Conclusions A decision aid can provide information, facilitate clinician-patient dialog and strengthen the therapeutic relationship. Implementation of the decision aid can fit into a model of team care that respects and exemplifies professional identity, and can facilitate intra-team communication. Trial registration Clinicaltrials.gov Identifier: NCT02379078. Date of Registration: 11 February 2015.

Impact of MyDiabetesPlan, a Web-Based Patient Decision Aid on Decisional Conflict, Diabetes Distress, Quality of Life, and Chronic Illness Care in Patients With Diabetes: Cluster Randomized Controlled Trial

“…We previously reported on how the development and refinement of MyDiabetesPlan , an interprofessional shared decision-making (IPSDM) toolkit, following the principles of user-centered design [ 19 , 20 ]. In this paper, we describe our assessment of the effectiveness of MyDiabetesPlan through a two-step cluster RCT followed by individual interviews.…”

“…In brief, the first step was provider-directed ( MyDiabetesPlan was delivered to physicians, nurses, dietitians , or pharmacists), whereas the second step (occurring 6 months later) was provider- and patient-directed (patients were asked to use MyDiabetesPlan by themselves before the appointment; this was then reviewed by the provider team). We chose a two-step approach because a prior feasibility study [ 20 ] identified that patients required clinician assistance for completing their initial MyDiabetesPlan . Outcome measures were administered at the first step (baseline), second step (6 months later), and follow-up (12 months later).…”

Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review

“…[ 39 ]). There were no definitions or conceptualisation of public involvement in almost half of articles ( n = 43, 46.2%) [ 40 – 82 ]. Where reported, public participant numbers ranged from 4 [ 83 ], to an estimated 1200 [ 84 ], though no numbers were given in 13 articles (14.0%) [ 45 , 47 , 49 , 58 , 69 , 72 – 74 , 77 , 85 – 88 ], and incomplete or estimated numbers were provided in a further 25 (26.9%) [ 40 , 43 , 44 , 50 , 51 , 56 , 57 , 61 – 63 , 66 , 76 , 82 , 84 , 89 – 99 ].…”

“…There were no definitions or conceptualisation of public involvement in almost half of articles ( n = 43, 46.2%) [ 40 – 82 ]. Where reported, public participant numbers ranged from 4 [ 83 ], to an estimated 1200 [ 84 ], though no numbers were given in 13 articles (14.0%) [ 45 , 47 , 49 , 58 , 69 , 72 – 74 , 77 , 85 – 88 ], and incomplete or estimated numbers were provided in a further 25 (26.9%) [ 40 , 43 , 44 , 50 , 51 , 56 , 57 , 61 – 63 , 66 , 76 , 82 , 84 , 89 – 99 ]. Some authors provided demographic data of public participants, such as age, gender, medical condition and/or race, however, there was no detail provided in more than half of articles ( n = 52, 55.9%) [ 37 , 38 , 40 , 41 , 43 – 51 , 55 , 58 , 59 , 61 , 63 , 66 , 68 , 69 , 71 – 74 , 77 , 79 , 81 – 88 , 93 , 95 – 110 ].…”

Development of a decision aid to support colorectal cancer screening: perspectives of Asians in an endemic urban community—a qualitative research study

“…Participants were keen to be involved in decision making and identified the doctor as the key healthcare professional to advocate and advise on CRC screening. A trusting doctor-patient relationship is the cornerstone in SDM [ 35 ]. It is imperative for doctors to modify their consultation style from a paternalistic approach to SDM.…”