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Evaluation of a shared decision-making intervention for dialysis choice at four Danish hospitals: a qualitative study of patient perspective.

ABSTRACT: OBJECTIVE:To evaluate the 'Shared Decision-making and Dialysis Choice' (SDM-DC) intervention with regard to patients' experience and involvement. DESIGN:Semistructured individual interviews and systematic text condensation for data analysis. SETTING:The SDM-DC intervention was implemented and evaluated at four different hospitals in Denmark. PARTICIPANTS:A total of 348 patients had received the SDM-DC intervention, and of these 29 patients were interviewed. INTERVENTIONS:SDM-DC was designed for patients facing a choice of dialysis modality. The available modalities were haemodialysis and peritoneal dialysis, either performed by patients on their own or with help from a healthcare professional. The intervention was tailored to individual patients and consisted of three meetings with a dialysis coordinator who introduced a patient decision aid named 'Dialysis Choice' to the patient. FINDINGS:The following were the four main findings: the decision was experienced as being the patient's own; the meetings contributed to the decision process; 'Dialysis Choice' contributed to the decision process; and the decision process was experienced as being iterative. CONCLUSIONS:The patients experienced SDM-DC as involving them in their choice of dialysis modality. Due to the iterative properties of the decision-making process, a shared decision-making intervention for dialysis choice has to be adapted to the needs of individual patients. The active mechanisms of the meetings with the dialysis coordinator were (1) questions to and from the patient, and (2) the dialysis coordinator providing accurate information about the options. The overview of options and the value clarification tool in the decision aid were particularly helpful in establishing a decision-making process based on informed preferences.

SUBMITTER: Finderup J

PROVIDER: S-EPMC6803133 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Evaluation of a shared decision-making intervention for dialysis choice at four Danish hospitals: a qualitative study of patient perspective.

Finderup Jeanette J Dam Jensen Jens J Lomborg Kirsten K

BMJ open 20191018 10

<h4>Objective</h4>To evaluate the 'Shared Decision-making and Dialysis Choice' (SDM-DC) intervention with regard to patients' experience and involvement.<h4>Design</h4>Semistructured individual interviews and systematic text condensation for data analysis.<h4>Setting</h4>The SDM-DC intervention was implemented and evaluated at four different hospitals in Denmark.<h4>Participants</h4>A total of 348 patients had received the SDM-DC intervention, and of these 29 patients were interviewed.<h4>Interv ...[more]

PMID: 31630101

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Project description:BackgroundPatients with kidney failure experience a complex decision on dialysis modality performed either at home or in hospital. The options have different levels of impact on their physical and psychological condition and social life. The purpose of this study was to evaluate the implementation of an intervention designed to achieve shared decision-making for dialysis choice. Specific objectives were: 1) to measure decision quality as indicated by patients' knowledge, readiness and achieved preferences; and 2) to determine if patients experienced shared decision-making.MethodA mixed methods descriptive study was conducted using both questionnaires and semi-structured interviews. Eligible participants were adults with kidney failure considering dialysis modality. The intervention, based on the Three-Talk model, consisted of a patient decision aid and decision coaching meetings provided by trained dialysis coordinators. The intervention was delivered to 349 patients as part of their clinical pathway of care. After the intervention, 148 participants completed the Shared Decision-Making Questionnaire and the Decision Quality Measurement, and 29 participants were interviewed. Concordance between knowledge, decision and preference was calculated to measure decision quality. Interview transcripts were analysed qualitatively.ResultsThe participants obtained a mean score for shared decision-making of 86 out of 100. There was no significant difference between those choosing home- or hospital-based treatment (97 versus 83; p = 0.627). The participants obtained a knowledge score of 82% and a readiness score of 86%. Those choosing home-based treatment had higher knowledge score than those choosing hospital-based treatment (84% versus 75%; p = 0.006) but no significant difference on the readiness score (87% versus 84%; p = 0.908). Considering the chosen option and the knowledge score, 83% of the participants achieved a high-quality decision. No significant difference was found for decision quality between those choosing home- or hospital-based treatment (83% versus 83%; p = 0.935). Interview data informed the interpretation of these results.ConclusionsAlthough there was no control group, over 80% of participants exposed to the intervention and responded to the surveys experienced shared decision-making and reached a high-quality decision. Both participants who chose home- and hospital-based treatment experienced the intervention as shared decision-making and made a high-quality decision. Qualitative findings supported the quantitative results.Trial registrationThe full trial protocol is available at ClinicalTrials. Gov ( NCT03868800 ). The study has been registered retrospectively.

Project description:BackgroundShared decision-making (SDM) is widely recommended and required by the Centers for Medicare and Medicaid for patients considering lung cancer screening (LCS).ObjectiveWe examined clinicians' communication practices and perceived barriers of SDM for LCS at three medical centers with established screening programs.DesignMulticenter qualitative study of clinicians participating in LCS.ApproachWe performed semi-structured interviews, which were transcribed and analyzed using directed content analysis, guided by a theoretical model of patient-clinician communication.ParticipantsWe interviewed 24 clinicians including LCS coordinators (2), pulmonologists (3), and primary care providers (17), 4 of whom worked for the LCS program, a thoracic surgeon, and a radiologist.ResultsAll clinicians agreed with the goal of SDM, to ensure the screening decision was congruent with the patient's values. The depth and type of information presented by each clinician role varied considerably. LCS coordinators presented detailed information including numeric estimates of benefit and harm. Most PCPs explained the process more generally, focusing on logistics and the high rate of nodule detection. No clinician explicitly elicited values or communication preferences. Many PCPs tailored the conversation based on their implicit understanding of patients' values and preferences, gained from past experiences. PCPs reported that time, lack of detailed personal knowledge of LCS, and patient preferences were barriers to SDM. Many clinicians perceived that a significant proportion of patients were not interested in specific percentages and preferred to receive a clinician recommendation.ConclusionsOur results suggest that clinicians support the goal of SDM for LCS decisions but PCPs may not perform some of its elements. The lack of completion of some elements, such as PCPs' lack of in-depth information exchange, may reflect perceived patient preferences for communication. As LCS is implemented, further research is needed to support a personalized, patient-centered approach to produce better outcomes.

Project description:ObjectivesTo explore how people with chronic kidney disease who are pre-dialysis, family members and healthcare professionals together navigate common shared decision-making processes and to assess how this impacts future treatment choice.DesignCoproductive qualitative study, underpinned by the Making Good Decisions in Collaboration shared decision-model. Semistructured interviews with a purposive sample from February 2019 - January 2020. Interview data were analysed using framework analysis. Coproduction of logic models/roadmaps and recommendations.SettingFive Welsh kidney services.Participants95 participants (37 patients, 19 family members and 39 professionals); 44 people supported coproduction (18 patients, 8 family members and 18 professionals).FindingsShared decision-making was too generic and clinically focused and had little impact on people getting onto home dialysis. Preferences of where, when and how to implement shared decision-making varied widely. Apathy experienced by patients, caused by lack of symptoms, denial, social circumstances and health systems issues made future treatment discussions difficult. Families had unmet and unrecognised needs, which significantly influenced patient decisions. Protocols containing treatment hierarchies and standards were understood by professionals but not translated for patients and families. Variation in dialysis treatment was discussed to match individual lifestyles. Patients and professionals were, however, defaulting to the perceived simplest option. It was easy for patients to opt for hospital-based treatments by listing important but easily modifiable factors.ConclusionsShared decision-making processes need to be individually tailored with more attention on patients who could choose a home therapy but select a different option. There are critical points in the decision-making process where changes could benefit patients. Patients need to be better educated and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. There needs to be more awareness of the costs and benefits of the various treatment options when making decisions.

Project description:ImportanceAlopecia areata (AA) is an autoimmune disorder of hair loss with a complex and evolving treatment landscape, making it an ideal setting for shared decision-making (SDM) between patients and physicians. Given the varying efficacy, experience, and risks of treatments for AA, we sought to evaluate patient preferences for SDM and the association of SDM with decisional regret.ObjectiveTo evaluate patient preferences for SDM and the association of SDM with decisional regret.Design, setting, and participantsA cross-sectional online survey using the validated SDMQ9 scale for shared decision-making and Decisional Regret Scale (DRS) was distributed using the National Alopecia Areata Foundation (NAAF) with the aim of assessing (1) patient preferences in SDM when making treatment decisions, (2) how patients perceived the last decision to have been made, (3) which components of SDM were incorporated into the last decision, and (4) decisional regret related to their last treatment decision. The survey was distributed from July 12, 2021, to August 2, 2021, and data analysis occurred from October 2021 to March 2022.Main outcomes and measuresPrimary outcomes included (1) patient preferences in incorporation of SDM, (2) how patients made their most recent treatment decision, (3) which components of SDM were incorporated into their most recent treatment decision measured with the validated SDMQ9, and (4) an assessment of decisional regret in relation to SDM components and the most recent treatment modality used by the patient as measured by the validated DRS.ResultsOf 1387 individuals who initiated the survey, 1074 completed it and were included in the analysis (77.4% completion rate). Overall, 917 respondents were women (85.4%). There were 5 American Indian or Alaska Native respondents (0.5%), 33 were Asian (3.1%), 112 Black or African American (10.4%), 836 White (77.8%), and 36 were multiracial (3.4%) or other (36 [3.4%]). The mean age (SD) was 49.3 (15.4) years. Most respondents preferred making the final treatment decision themselves after considering their physician's opinion (503 [46.8%]). Of those who preferred to make treatment decisions using SDM, most made the last AA treatment decision with their physician (596 [55%]; 95% CI, 53%-58%; P < .001). The components of SDM implemented by the patients' dermatologists most identified were the physician "explained the advantages and disadvantages of treatment options" (472 [44%]), and the physician "asked me which treatment option I prefer" (494 [45.9%]). Incorporation of SDM by physicians was generally associated with decreased decisional regret (all ORs with 95% CIs greater than 1.1; P < .01). The treatments associated with the lowest decisional regret were Janus kinase (JAK) inhibitors, followed by biologics, and deciding not to treat; whereas, the highest decisional regret was reported with anthralin and minoxidil.Conclusions and relevanceThe findings of this cross-sectional survey study suggest that patients with AA prefer to make treatment decisions with their dermatologist using SDM. When SDM is used, patients report less decisional regret, indicating that SDM may help improve the patient-reported quality of treatment decisions. Newer, more efficacious therapies such as JAK inhibitors may be related to lower decisional regret. Future studies should seek to devise solutions to implement SDM as the AA treatment landscape continues to evolve.

Project description:BACKGROUND AND OBJECTIVES:Despite increasing attention to the use of shared decision making (SDM) in the emergency department (ED), little is known about ED patients' perspectives regarding this practice. We sought to explore the use of SDM from the perspectives of ED patients, focusing on what affects patients' desired level of involvement and what barriers and facilitators patients find most relevant to their experience. METHODS:We conducted semistructured interviews with a purposive sample of ED patients or their proxies at two sites. An interview guide was developed from existing literature and expert consensus and based on a framework underscoring the importance of both knowledge and power. Interviews were recorded, transcribed, and analyzed in an iterative process by a three-person coding team. Emergent themes were identified, discussed, and organized. RESULTS:Twenty-nine patients and proxies participated. The mean age of participants was 56 years (range, 20 to 89 years), and 13 were female. Participants were diverse in regard to race/ethnicity, education, number of previous ED visits, and presence of chronic conditions. All participants wanted some degree of involvement in decision making. Participants who made statements suggesting high self-efficacy and those who expressed mistrust of the health care system or previous negative experiences wanted a greater degree of involvement. Facilitators to involvement included familiarity with the decision at hand, physicians' good communication skills, and clearly delineated options. Some participants felt that their own relative lack of knowledge, compared to that of the physicians, made their involvement inappropriate or unwanted. Many participants had no expectation for SDM and although they did want involvement when asked explicitly, they were otherwise likely to defer to physicians without discussion. Many did not recognize opportunities for SDM in their clinical care. CONCLUSIONS:This exploration of ED patients' perceptions of SDM suggests that most patients want some degree of involvement in medical decision making but more proactive engagement of patients by clinicians is often needed. Further research should examine these issues in a larger and more representative population.

Dataset Information

Evaluation of a shared decision-making intervention for dialysis choice at four Danish hospitals: a qualitative study of patient perspective.

Publications

Evaluation of a shared decision-making intervention for dialysis choice at four Danish hospitals: a qualitative study of patient perspective.

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