Beyond standard rehabilitation programmes: Working with people with MS for adequate goal setting and rehabilitation treatment evaluation

2019 ◽  
Vol 25 (10) ◽  
pp. 1394-1401 ◽  
Author(s):  
E Diane Playford

Shared decision-making occurs when the decision is ‘preference sensitive’. It consists of identifying the different treatment options (choice talk), considering the advantages and disadvantages of each option (option talk), and then supporting making the decision in the light of an individual’s experiences and values (decision talk). It is most effective when working with an ‘activated patient’, that is, one who is prepared for the shared decision-making role. In rehabilitation, many decisions are preference sensitive. These decisions may be framed as ‘goal setting’. Skilled clinicians can support patients to learn goal setting skills until the person has the skills to maintain health supporting behaviours most of the time, only seeing a clinical team at times of change or crisis. The steps in goal setting can be summarised as building empathy, creating a contract, identifying priorities, summarising the conversation, articulating the goal, defining actions, building coping plans, and then reviewing progress. Working with people with MS can extend beyond working with individuals to a consideration of what people with MS want from services. This can result in the co-production and co-design of services, as well as the identification of research priorities as exemplified by the James Lind Alliance.

Author(s):  
Catherine H. Yu ◽  
◽  
Calvin Ke ◽  
Aleksandra Jovicic ◽  
Susan Hall ◽  
...  

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.


2018 ◽  
Vol 33 (3) ◽  
pp. 564-574 ◽  
Author(s):  
Alice Rose ◽  
Andy Soundy ◽  
Sheeba Rosewilliam

Objectives: To assess the extent of shared decision-making within goal-setting meetings and explore patient-reported factors that influenced their participation to shared decision-making about their goals. Design: A two-phase explanatory sequential mixed-methods study, using questionnaires and interviews. Setting: A rehabilitation centre and patients’ homes. Subjects: Frail elderly patients. Main Measures: Quantitative data were collected after every patient’s goal-setting meeting using the Multifocal Approach to Sharing in Shared Decision Making (MAPPIN’SDM) questionnaire that assesses competencies relevant to shared decision-making. Shared decision-making was rated by an observer, patients and staff and compared. Qualitative data were collected through semi-structured interviews. Results: A total of 24 rehabilitation team members and 40 patients (mean age: 83 years) participated. All study participants felt that competency 7a (the language used by staff made sense to the patient) was observed in all meetings. Patients reported that for 22 of the meetings competency 4a, the advantages and disadvantages of rehabilitation, was not discussed. Games-Howell tests for direction of differences between groups showed significant difference ( P = 0.001) between patients and staff in whether patients’ problems were discussed. Nine patients’ interviews suggested that motivation, self-confidence, family support, preparing themselves, getting information about goal-setting and rehabilitation options could enable them to participate in shared decision-making. They suggested that staff should communicate clearly and demonstrate that they are listening to patients but without a paternalistic approach. Conclusion: Staff exhibited most shared decision-making competencies at a good level. However, patients highlighted problems with information sharing and felt staff might not be listening to them. Research and practice should explore tools to address these shortfalls.


Author(s):  
Kristin L. Rising ◽  
Alexzandra T. Gentsch ◽  
Geoffrey Mills ◽  
Marianna LaNoue ◽  
Amanda M.B. Doty ◽  
...  

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
I. E. H. Kremer ◽  
P. J. Jongen ◽  
S. M. A. A. Evers ◽  
E. L. J. Hoogervorst ◽  
W. I. M. Verhagen ◽  
...  

Abstract Background Since decision making about treatment with disease-modifying drugs (DMDs) for multiple sclerosis (MS) is preference sensitive, shared decision making between patient and healthcare professional should take place. Patient decision aids could support this shared decision making process by providing information about the disease and the treatment options, to elicit the patient’s preference and to support patients and healthcare professionals in discussing these preferences and matching them with a treatment. Therefore, a prototype of a patient decision aid for MS patients in the Netherlands—based on the principles of multi-criteria decision analysis (MCDA) —was developed, following the recommendations of the International Patient Decision Aid Standards. MCDA was chosen as it might reduce cognitive burden of considering treatment options and matching patient preferences with the treatment options. Results After determining the scope to include DMDs labelled for relapsing-remitting MS and clinically isolated syndrome, users’ informational needs were assessed using focus groups (N = 19 patients) and best-worst scaling surveys with patients (N = 185), neurologists and nurses (N = 60) to determine which information about DMDs should be included in the patient decision aid. Next, an online format and computer-based delivery of the patient decision aid was chosen to enable embedding of MCDA. A literature review was conducting to collect evidence on the effectiveness and burden of use of the DMDs. A prototype was developed next, and alpha testing to evaluate its comprehensibility and usability with in total thirteen patients and four healthcare professionals identified several issues regarding content and framing, methods for weighting importance of criteria in the MCDA structure, and the presentation of the conclusions of the patient decision aid ranking the treatment options according to the patient’s preferences. Adaptations were made accordingly, but verification of the rankings provided, validation of the patient decision aid, evaluation of the feasibility of implementation and assessing its value for supporting shared decision making should be addressed in further development of the patient decision aid. Conclusion This paper aimed to provide more transparency regarding the developmental process of an MCDA-based patient decision aid for treatment decisions for MS and the challenges faced during this process. Issues identified in the prototype were resolved as much as possible, though some issues remain. Further development is needed to overcome these issues before beta pilot testing with patients and healthcare professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, healthcare professionals and the quality of care.


2021 ◽  
Author(s):  
Apurupa Ballamudi ◽  
John Chi

Shared decision-making (SDM) is a process in which patients and providers work together to make medical decisions with a patient-centric focus, considering available evidence, treatment options, the patient’s values and goals, and risks and benefits. It is important for all providers to understand how to effectively use SDM in their interactions with patients to improve patients’ experiences throughout their healthcare journey. There are strategies to improve communication between patients and their providers, particularly when communicating quantitative data, risks and benefits, and treatment options. Decision aids (DAs) can help patients understand complex medical information and make an informed decision. This review contains 9 figures, 4 tables and 45 references Key words: Shared decision-making, decision-making, communication, risk and benefit, patient-centered, health literacy, quality of life, decision aids, option grid, pictographs.


2019 ◽  
Vol 184 (Supplement_1) ◽  
pp. 467-475 ◽  
Author(s):  
Bella Etingen ◽  
Jennifer N Hill ◽  
Laura J Miller ◽  
Alan Schwartz ◽  
Sherri L LaVela ◽  
...  

Abstract Objective To describe current practices used by Veterans Administration (VA) mental health (MH) providers involved in post-traumatic stress disorder (PTSD) treatment planning to support engagement of veterans with PTSD in shared decision-making (SDM). Methods Semi-structured interviews with MH providers (n = 9) were conducted at 1 large VA, audio-recorded, and transcribed verbatim. Transcripts were analyzed deductively, guided by a published account of the integral SDM components for MH care. Results While discussing forming a cohesive team with patients, providers noted the importance of establishing rapport and assessing treatment readiness. Providers’ clinical knowledge/expertise, knowledge of the facility’s treatment options, knowledge of how to navigate the VA MH care system, and patient factors (goals/preferences, factors influencing treatment engagement) were noted as important to consider when patients and providers exchange information. When negotiating the treatment plan, providers indicated that conversations should include treatment recommendations and concurrent opportunities for personalization. They also emphasized the importance of discussions to finalize a mutually agreeable patient- and provider-informed treatment plan and measure treatment impact. Conclusion These results offer a preliminary understanding of VA MH providers’ facilitation of SDM for PTSD care. Findings may provide insights for MH providers who wish to engage patients with PTSD in SDM.


2018 ◽  
Vol 42 (4) ◽  
pp. 378-386 ◽  
Author(s):  
Matthew Quigley ◽  
Michael P Dillon ◽  
Stefania Fatone

Background: Shared decision making is a consultative process designed to encourage patient participation in decision making by providing accurate information about the treatment options and supporting deliberation with the clinicians about treatment options. The process can be supported by resources such as decision aids and discussion guides designed to inform and facilitate often difficult conversations. As this process increases in use, there is opportunity to raise awareness of shared decision making and the international standards used to guide the development of quality resources for use in areas of prosthetic/orthotic care. Objectives: To describe the process used to develop shared decision-making resources, using an illustrative example focused on decisions about the level of dysvascular partial foot amputation or transtibial amputation. Development process: The International Patient Decision Aid Standards were used to guide the development of the decision aid and discussion guide focused on decisions about the level of dysvascular partial foot amputation or transtibial amputation. Examples from these shared decision-making resources help illuminate the stages of development including scoping and design, research synthesis, iterative development of a prototype, and preliminary testing with patients and clinicians not involved in the development process. Conclusion: Lessons learnt through the process, such as using the International Patient Decision Aid Standards checklist and development guidelines, may help inform others wanting to develop similar shared decision-making resources given the applicability of shared decision making to many areas of prosthetic-/orthotic-related practice. Clinical relevance Shared decision making is a process designed to guide conversations that help patients make an informed decision about their healthcare. Raising awareness of shared decision making and the international standards for development of high-quality decision aids and discussion guides is important as the approach is introduced in prosthetic-/orthotic-related practice.


Author(s):  
Martin H.N. Tattersall ◽  
David W. Kissane

The respect of a patient’s autonomous rights within the model of patient-centred care has led to shared decision-making, rather than more paternalistic care. Understanding patient needs, preferences, and lifestyle choices are central to developing shared treatment decisions. Patients can be prepared through the use of question prompt sheets and other decision aids. Audio-recording of informative consultations further helps. A variety of factors like the patient’s age, tumour type and stage of disease, an available range of similar treatment options, and their risk-benefit ratios will impact on the use of shared decision-making. Modifiable barriers to shared decision-making can be identified. Teaching shared decision-making includes the practice of agenda setting, use of partnership statements, clarification of patient preferences, varied approaches to explaining potential treatment benefits and risks, review of patient values and lifestyle factors, and checking patient understanding–this sequence helps both clinicians and patients to optimally reach a shared treatment decision.


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