Patient readiness for shared decision making about treatment:Conceptualisation and development of the Ready^SDM

Introduction: Shared decision making (SDM) requires an active role of both clinicians and patients. We aimed to conceptualise patient readiness for SDM about treatment, and to develop a patient questionnaire to assess readiness. Methods: We used the results of a scoping review and a qualitative study to inform the patient readiness construct. We conducted five additional rounds of data collection to finalise the construct definition and develop the Patient Readiness for SDM Questionnaire (ReadySDM) in an oncological setting: (1) longitudinal interviews with patients with cancer during and after a treatment decision-making process; (2) a pilot study among experts, clinicians, and patients for feedback on the concept and items; (3) a field test among (former) patients with cancer to test item format and content validity, and to reduce the number of items; (4) cognitive interviews with people with low literacy to test the comprehensibility of the questionnaire; and (5) a field test among (former) patients who faced a cancer treatment decision in the last year, to test the content validity of the final version of the questionnaire.Results: A total of 251 people participated in the various rounds of data collection. We identified eight elements of patient readiness for SDM about treatment: (1) understanding of and attitude towards SDM; (2) information skills; (3) skills in communicating and claiming space; (4) self-awareness; (5) consideration skills; (6) self-efficacy; (7) emotional distress; and (8) experienced time. We developed the 20-item ReadySDM to retrospectively measure these elements in an oncological setting. Conclusion: We conducted a thorough procedure to conceptualise patient readiness and to develop the ReadySDM. The questionnaire aims to provide novel insights into ways to enhance SDM in daily practice. Patient or Public Contribution: Multiple people with lived experience were involved in various phases of the study. They were asked for input on the study design, the conceptualisation of readiness, and the development of the questionnaire.</p

Does value-based healthcare support patient-centred care? A scoping review of the evidence

Background Standardisation of outcome measures is integral to value-based healthcare (VBHC), which may conflict with patient-centred care, focusing on personalisation.Objectives We aimed to provide an overview of measures used to assess the effect of VBHC implementation and to examine to what extent the evidence indicates that VBHC supports patient-centred care.Design A scoping review guided by the Joanna Briggs Institute methodology.Sources of evidence We searched the following databases on 18 February 2021: Cochrane Library, EMBASE, MEDLINE and Web of Science.Eligibility criteria We included empirical papers assessing the effect of the implementation of VBHC, published after introduction of VBHC in 2006.Data extraction and synthesis Two independent reviewers double-screened papers and data were extracted by one reviewer and checked by the other. We classified the study measures used in included papers into six categories: process indicator, cost measure, clinical outcome, patient-reported outcome, patient-reported experience or clinician-reported experience. We then assessed the patient-centredness of the study measures used.Results We included 39 studies using 94 unique study measures. The most frequently used study measures (n=72) were process indicators, cost measures and clinical outcomes, which rarely were patient-centred. The less frequently used (n=20) patient-reported outcome and experience measures often measured a dimension of patient-centred care.Conclusion Our study shows that the evidence on VBHC supporting patient-centred care is limited, exposing a knowledge gap in VBHC research. The most frequently used study measures in VBHC research are not patient-centred. The major focus seems to be on measures of quality of care defined from a provider, institution or payer perspective

Interprofessional education about patient decision support in specialty care

Specialty care involves services provided by health professionals who focus on treating diseases affecting one body system. In contrast to primary care - aimed at providing continuous, comprehensive care - specialty care often involves intermittent episodes of care focused around specific medical conditions. In addition, it typically includes multiple providers who have unique areas of expertise that are important in supporting patients' care. Interprofessional care involves multiple professionals from different disciplines collaborating to provide an integrated approach to patient care. For patients to experience continuity of care across interprofessional providers, providers need to communicate and maintain a shared sense of responsibility to their patients. In this article, we describe challenges inherent in providing interprofessional patient decision support in specialty care. We propose ways for providers to engage in interprofessional decision support and discuss promising approaches to teaching an interprofessional decision support to specialty care providers. Additional evaluation and empirical research are required before further recommendations can be made about education for interprofessional decision support in specialty care.Medical Decision MakingAnalysis and support of clinical decision makin

For which decisions is Shared Decision Making considered appropriate? – A systematic review

Objective:To identify decision characteristics for which SDM authors deem SDM appropriate or not, and what arguments are used.Methods:We applied two search strategies: we included SDM models from an earlier review (strategy 1) and conducted a new search in eight databases to include papers other than describing an SDM model, such as original research, opinion papers and reviews (strategy 2).Results:From the 92 included papers, we identified 18 decision characteristics for which authors deemed SDM appropriate, including preference-sensitive, equipoise and decisions where patient commitment is needed in implementing the decision. SDM authors indicated limits to SDM, especially when there are immediate life-saving measures needed. We identified four decision characteristics on which authors of different papers disagreed on whether or not SDM is appropriate.Conclusion:The findings of this review show the broad range of decision characteristics for which authors deem SDM appropriate, the ambiguity of some, and potential limits of SDM.Practice implications:The findings can stimulate clinicians to (re)consider pursuing SDM in situations in which they did not before. Additionally, it can inform SDM campaigns and educational programs as it shows for which decision situations SDM might be more or less challenging to practice

Information preferences about treatment options in diffuse cutaneous systemic sclerosis: A Delphi consensus study

Objectives: The aim of this study was to identify and prioritize aspects essential for decision making in patients with diffuse cutaneous systemic sclerosis (dcSSc) and to gain insight into information preferences of treatment options which could guide development of a leaflet for patients. Methods: A three-round Delphi study was conducted with a panel of patients with dcSSc. The questionnaire was based on a systematic literature search regarding benefits and harms of four main treatment options in dcSSc: methotrexate, mycophenolate mofetil, cyclophosphamide pulses and stem cell transplantation. Patients were asked to identify information that is essential for making a treatment decision. After the third round, a live, online discussion was held in order to reach consensus on these items and to discuss the content and design of the leaflet. Consensus was defined as ⩾75% agreement among panel members. Results: Of the 36 patients invited, 78% (n = 28) participated in one or more rounds, 67% (n = 24) completed the first, 69% (n = 25) the second and 75% (n = 27) the third round. In the last round, median age of participants was 51 years (interquartile range, 18) and median disease duration 4 years (interquartile range, 5); 52% were female. Patients had been treated with mycophenolate mofetil (67%), methotrexate (44%), cyclophosphamide (41%), autologous stem cell transplantation (26%), rituximab (4%) or were treatment-naïve (7%). Eight patients joined the live panel discussion. The panel reached consensus on seven benefits (prolonged progression-free survival, improved quality of life, improved daily functioning, improved pulmonary function, improved skin thickness, improved mobility and reduced fatigue) and four harms (treatment-related mortality, infections, cardiac damage, increased risk of cancer) as essential information for decision making. Also a design of a leaflet was made. Conclusion: This study identified information about treatment options in dcSSc that should be addressed with patients. Our results can be used to develop effective patient information

Corrigendum to: ‘Patient-related characteristics considered to affect patient involvement in shared decision making about treatment: A scoping review of the qualitative literature’ Patient Education and Counseling 111 (2023) 107677'

The authors regret to inform readers that there were errors in the numbering of some citations in Table 1 and in one sentence in section 3.3.2. The corrections (indicated in bold) are: Table 1, Alameddine, 2020, Dubai [64]; Baig, 2020, Pakistan [65]; Becher, 2021, Germany [40]; Carrotte, 2021, Australia [38]; Finlay, 2020, Canada [81]; Gibson, 2020, England [41]; Haugom, 2020, Norway [80]; House, 2021, USA [79]; Huang, 2021, China [45]; Jiang, 2021, China [54]; Keij, 2021, the Netherlands [9]; Moleman, 2021, the Netherlands [67]; Pan, 2022, China [26]; Rodenburg-Vandenbussche, 2020, the Netherlands [36], Sumpton, 2021, Australia [35], Van Beek-Peeters, 2021, the Netherlands [21]; Vedasto, 2021, Tanzania [25]; Whitney, 2021, USA [77]; Windon, 2021, USA [34]; Wubben, 2021, the Netherlands [66]. The corrected table can be found below. Self-efficacy and self-confidence in being involved in the SDM process were reported to benefit patient involvement [20, 35, 40, 54], and such self-efficacy may grow over time [35]. The authors would like to apologise for any inconvenience caused [Table presented]. DOI of original article: doi: 10.1016/j.pec.2023.107677.</p

Patient-clinician collaboration in making care fit:A qualitative analysis of clinical consultations in diabetes care

Objective: To confirm described dimensions of making care fit and explore how patients and clinicians collaborate to make care fit in clinical practice. Methods: As part of an ongoing study, we audiotaped and transcribed patient-clinician consultations in diabetes care. We purposively selected consultations based on participants’ demographical, biomedical and biographical characteristics. We analysed transcripts using reflexive thematic analysis. We combined a deductive and inductive approach, using the pre-described dimensions of making care fit and adding new (sub-)dimensions when pertinent. Results: We analysed 24 clinical consultations. Our data confirmed eight previously described dimensions and provided new sub-dimensions of making care fit with examples from clinical practice (problematic situation, influence of devices, sense of options, shared agenda setting, clinician context, adapting to changing organization of care, and possibility to reconsider). Conclusion: Our study confirmed, specified and enriched the conceptualization of making care fit through practice examples. We observed patient-clinician collaboration in exploration of patients’ context, and by responsively changing, adapting or maintaining care plans. Practice implications: Our findings support clinicians and researchers with insights in important aspects of patient-clinician collaboration. Ultimately, this would lead to optimal design of care plans that fit well in each patient life.</p

Patient-clinician collaboration in making care fit:A qualitative analysis of clinical consultations in diabetes care

Objective: To confirm described dimensions of making care fit and explore how patients and clinicians collaborate to make care fit in clinical practice. Methods: As part of an ongoing study, we audiotaped and transcribed patient-clinician consultations in diabetes care. We purposively selected consultations based on participants’ demographical, biomedical and biographical characteristics. We analysed transcripts using reflexive thematic analysis. We combined a deductive and inductive approach, using the pre-described dimensions of making care fit and adding new (sub-)dimensions when pertinent. Results: We analysed 24 clinical consultations. Our data confirmed eight previously described dimensions and provided new sub-dimensions of making care fit with examples from clinical practice (problematic situation, influence of devices, sense of options, shared agenda setting, clinician context, adapting to changing organization of care, and possibility to reconsider). Conclusion: Our study confirmed, specified and enriched the conceptualization of making care fit through practice examples. We observed patient-clinician collaboration in exploration of patients’ context, and by responsively changing, adapting or maintaining care plans. Practice implications: Our findings support clinicians and researchers with insights in important aspects of patient-clinician collaboration. Ultimately, this would lead to optimal design of care plans that fit well in each patient life.</p

The value of using patient-reported outcomes for health screening during long-term follow-up after paediatric stem cell transplantation for nonmalignant diseases

Introduction: The assessment of using patient-reported outcomes (PROs) within comprehensive care follow-up programmes, specifically focused on health screening, remains largely unexplored. PROs were implemented in our late effects and comprehensive care programme after paediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. The programme focuses solely on screening of physical and mental health and on discussing PROs during the consultation. Methods: The primary method of this study was semistructured interviews to explore the perspective of both patients and healthcare providers' (HCP) on the use of PROs, which were thematically analyzed. Additionally, an explorative quantitative approach with patient-reported experience measures (PREMS) was used, with a pretest–posttest design, to assess whether the use of PROs was accompanied by more patient-centred care. Results: From the patient-interviews (N = 15) four themes were extracted: use of PROs (1) help to discuss topics; (2) make the patients feel understood; (3) create a moment of self-reflection; and (4) make consultations more efficient. Pre- and postimplementation analysis of PREMs (N = 40) did not show significant differences in terms of patient-centeredness. Conclusion: Our results demonstrate the added value of integrating PROs for health screening purposes within the long-term follow-up programme after paediatric HSCT, as perceived by both patient and HCP. With the active use of PROs, patients are stimulated to consciously assess their health status. Patient Contribution: This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were shared with all patients (including nonparticipants) during a patient conference day.</p

Shared Decision Making in Health Care Visits for CKD:Patients’ Decisional Role Preferences and Experiences

Rationale &amp; Objective: Research on shared decision making (SDM) in chronic kidney disease (CKD) has focused almost exclusively on the modality of kidney replacement treatment. We explored what other CKD decisions are recognized by patients, what their preferences and experiences are regarding these decisions, and how decisions are made during their interactions with medical care professionals. Study Design: Cross-sectional study. Setting &amp; Participants: Patients with CKD receiving (outpatient) care in 1 of 2 Dutch hospitals. Exposure: Patients’ preferred decisional roles for treatment decisions were measured using the Control Preferences Scale survey administered after a health care visit with medical professionals. Outcome: Number of decisions for which patients experienced a decisional role that did or did not match their preferred role. Observed levels of SDM and motivational interviewing in audio recordings of health care visits, measured using the 4-step SDM instrument (4SDM) and Motivational Interviewing Treatment Integrity coding tools.Analytical Approach: The results were characterized using descriptive statistics, including differences in scores between the patients’ experienced and preferred decisional roles. Results: According to the survey (n = 122) patients with CKD frequently reported decisions regarding planning (112 of 122), medication changes (82 of 122), or lifestyle changes (59 of 122). Of the 357 reported decisions in total, patients preferred that clinicians mostly (125 of 357) or fully (101 of 357) make the decisions. For 116 decisions, they preferred a shared decisional role. For 151 of 357 decisions, the patients’ preferences did not match their experiences. Decisions were experienced as “less shared/patient-directed” (76 of 357) or “more shared/patient-directed” (75 of 357) than preferred. Observed SDM in 118 coded decisions was low (median 4; range, 0 – 22). Motivational interviewing techniques were rarely used. Limitations: Potential recall and selection bias, and limited generalizability. Conclusions: We identified multiple discrepancies between preferred, experienced, and observed SDM in health care visits for CKD. Although patients varied in their preferred decisional role, a large minority of patients expressed a preference for shared decision making for many decisions. However, SDM behavior during the health care visits was observed infrequently. Plain-Language Summary: Shared decision making (SDM) may be a valuable approach for common chronic kidney disease (CKD) decisions, but our knowledge is limited. We collected patient surveys after health care visits for CKD. Patients most frequently experienced decisions regarding planning, medication, and lifestyle. Three decisional roles were preferred by comparable numbers of patients: let the clinician alone decide, let the clinician decide for the most part, or “equally share” the decision. Patients’ experiences of who made the decision did not always match their preferences. In audio recordings of the health care visits, we observed low levels of SDM behavior. These findings suggest that the preference for “sharing decisions” is often unmet for a large number of patients.</p