The systematic and participatory development of a patient decision aid about terminal devices for people with upper limb absence: The PDA-TULA.

Selecting an upper limb prosthesis seems to be a challenge considering the high rejection rates. A patient decision aid (PDA) could support the decision-making process by providing information about available options and clarifying the patients' values related to those options. This study aims to describe the developmental process of a PDA about terminal devices (TDs) for people with upper limb absence: PDA-TULA. The developmental process was based on The International Patient Decision Aid Standards. We aimed at adults with major unilateral upper limb absence. A steering group including patients, clinicians, researchers, software and implementation experts was composed. The content and design of the PDA were based on a qualitative literature meta-synthesis, focus groups with patients and clinicians, surveys among patients and prosthetists, a nationwide digital meeting with clinicians and prosthetists, and information from manufacturers. Information on features of TDs was systematically collected, ordered, and refined. Subsequently, drafts of the PDA-TULA were made, improved, integrated into the software, and alpha tested. The digital PDA-TULA consists of three parts: (1) information about TDs; (2) consideration of personal values regarding the TDs; (3) comparison of TD profiles with a personal profile based on indicated preferences. A summarizing overview is offered to patients and clinicians. To conclude, a digital PDA, which was integrated into the national working process of clinicians, was developed in a systematic co-creation process. The PDA enables patients and their significant others to consider and formulate their preferences about TDs during the prosthesis selection process.

Towards assessing the preferred usage features of upper limb prostheses: most important items regarding prosthesis use in people with major unilateral upper limb absence-a Dutch national survey.

PURPOSE: To determine which items regarding prosthesis use were considered most important by adults with major unilateral upper limb absence (ULA) and to develop a patient-reported outcome measure to assess the preferred usage features of upper limb prostheses: PUF-ULP. MATERIALS AND METHODS: Based on a qualitative meta-synthesis combined with input from patients and clinicians a graphical diagram of 79 items related to prosthesis use was developed. Adults with ULA (N = 358; mean age = 55.4 ± 16.5 years; 52.0% male/40.8% female/7.3% unknown) selected their top-10 of most important items from this diagram. This study is registered in the Netherlands Trial Register: NL7682. RESULTS: Most selected items were "wearing comfort" (54.0% of cases), "grabbing, picking up, and holding" (34.3%), and "weight" (31.4%). All subpopulations (i.e. age, sex, origin of ULA, level of ULA, and prosthesis type), except multi-grip myoelectric hand prosthesis users (MHP), selected "wearing comfort" most. Nine items were included in the PUF-ULP: "wearing comfort," "functionality," "independence," "work, hobby, and household," "user-friendly," "life-like appearance," "phantom limb pain," "overuse complaints," and "reliability." CONCLUSIONS: All prosthesis users, except MHP-users, considered wearing comfort most important, which might be of interest for future research and industry. The PUF-ULP can be used to reflect the match between users and their prostheses.IMPLICATIONS FOR REHABILITATIONAll persons with upper limb absence, except multi-grip myoelectric hand prosthesis users, considered "wearing comfort" most important regarding prosthesis use, which highlights that prosthesis wearing comfort deserves more attention in future research to increase the value placed by the user on their upper limb prosthesis.Regarding prosthesis use, men considered "ease of control" more important compared to the overall population, while women considered "independence," "household," "life-like appearance," "overuse complaints," and "anonymity" more important.Persons with a mono- or multi-grip myoelectric upper limb prosthesis rated function-related items as more important compared to the overall population, while persons with a passive/cosmetic prosthesis rated comfort-related and appearance-related items as more important.The newly developed measurement tool, also called the PUF-ULP, provides a single score that represents the match between the user and their upper limb prosthesis.

Implementing Individually Tailored Prescription of Physical Activity in Routine Clinical Care: Protocol of the Physicians Implement Exercise = Medicine (PIE=M) Development and Implementation Project.

BACKGROUND: The prescription of physical activity (PA) in clinical care has been advocated worldwide. This "exercise is medicine" (E=M) concept can be used to prevent, manage, and cure various lifestyle-related chronic diseases. Due to several challenges, E=M is not yet routinely implemented in clinical care. OBJECTIVE: This paper describes the rationale and design of the Physicians Implement Exercise = Medicine (PIE=M) study, which aims to facilitate the implementation of E=M in hospital care. METHODS: PIE=M consists of 3 interrelated work packages. First, levels and determinants of PA in different patient and healthy populations will be investigated using existing cohort data. The current implementation status, facilitators, and barriers of E=M will also be investigated using a mixed-methods approach among clinicians of participating departments from 2 diverse university medical centers (both located in a city, but one serving an urban population and one serving a more rural population). Implementation strategies will be connected to these barriers and facilitators using a systematic implementation mapping approach. Second, a generic E=M tool will be developed that will provide tailored PA prescription and referral. Requirements for this tool will be investigated among clinicians and department managers. The tool will be developed using an iterative design process in which all stakeholders reflect on the design of the E=M tool. Third, we will pilot-implement the set of implementation strategies, including the E=M tool, to test its feasibility in routine care of clinicians in these 2 university medical centers. An extensive learning process evaluation will be performed among clinicians, department managers, lifestyle coaches, and patients using a mixed-methods design based on the RE-AIM framework. RESULTS: This project was approved and funded by the Dutch grant provider ZonMW in April 2018. The project started in September 2018 and continues until December 2020 (depending on the course of the COVID-19 crisis). All data from the first work package have been collected and analyzed and are expected to be published in 2021. Results of the second work package are described. The manuscript is expected to be published in 2021. The third work package is currently being conducted in clinical practice in 4 departments of 2 university medical hospitals among clinicians, lifestyle coaches, hospital managers, and patients. Results are expected to be published in 2021. CONCLUSIONS: The PIE=M project addresses the potential of providing patients with PA advice to prevent and manage chronic disease, improve recovery, and enable healthy ageing by developing E=M implementation strategies, including an E=M tool, in routine clinical care. The PIE=M project will result in a blueprint of implementation strategies, including an E=M screening and referral tool, which aims to improve E=M referral by clinicians to improve patients' health, while minimizing the burden on clinicians.

User-relevant factors determining prosthesis choice in persons with major unilateral upper limb defects: A meta-synthesis of qualitative literature and focus group results.

OBJECTIVE: Considering the high rejection rates of upper limb prostheses, it is important to determine which prosthesis fits best the needs of each user. The introduction of the multi-grip prostheses hands (MHP), which have functional advantages but are also more expensive, has made prosthesis selection even harder. Therefore, we aimed to identify user opinions on factors determining prosthesis choice of persons with major unilateral upper limb defects in order to facilitate a more optimal fit between user and prosthesis. METHODS: A qualitative meta-synthesis using a 'best-fit framework' approach was performed by searching five databases (PROSPERO registration number: CRD42019126973). Studies were considered eligible if they contained qualitative content about adults with major unilateral upper limb defects experienced in using commercially available upper limb prostheses and focused on upper limb prosthesis users' opinions. Results of the meta-synthesis were validated with end-users (n = 11) in a focus group. RESULTS: Out of 6247 articles, 19 studies were included. An overview of six main themes ('physical', 'activities and participation', 'mental', 'social', 'rehabilitation, cost and prosthetist services' and 'prosthesis related factors') containing 86 subthemes that could affect prosthesis choice was created. Of these subthemes, 19 were added by the focus group. Important subthemes were 'work/school', 'functionality' and 'reactions from public'. Opinions of MHP-users were scarce. MHPs were experienced as more dexterous and life-like but also as less robust and difficult to control. CONCLUSION: The huge number of factors that could determine upper limb prosthesis choice explains that preferences vary greatly. The created overview can be of great value to identify preferences and facilitate user-involvement in the selection process. Ultimately, this may contribute to a more successful match between user and prosthesis, resulting in a decrease of abandonment and increase of cost-effectiveness.

Developing and pilot testing a comprehensive health literacy communication training for health professionals in three European countries.

OBJECTIVE: Skills to address different health literacy problems are lacking among health professionals. We sought to develop and pilot test a comprehensive health literacy communication training for various health professionals in Ireland, Italy and the Netherlands. METHODS: Thirty health professionals participated in the study. A literature review focused on evidence-informed training-components. Focus group discussions (FGDs) explored perspectives from seventeen professionals on a prototype-program, and feedback from thirteen professionals following pilot-training. Pre-post questionnaires assessed self-rated health literacy communication skills. RESULTS: The literature review yielded five training-components to address functional, interactive and critical health literacy: health literacy education, gathering and providing information, shared decision-making, enabling self-management, and supporting behaviour change. In FGDs, professionals endorsed the prototype-program and reported that the pilot-training increased knowledge and patient-centred communication skills in addressing health literacy, as shown by self-rated pre-post questionnaires. CONCLUSION: A comprehensive training for health professionals in three European countries enhances perceived skills to address functional, interactive and critical health literacy. PRACTICE IMPLICATIONS: This training has potential for wider application in education and practice in Europe.

Combined clinical and home rehabilitation: case report of an integrated knowledge-to-action study in a Dutch rehabilitation stroke unit.

BACKGROUND AND PURPOSE: There is growing awareness that the poor uptake of evidence in health care is not a knowledge-transfer problem but rather one of knowledge production. This issue calls for re-examination of the evidence produced and assumptions that underpin existing knowledge-to-action (KTA) activities. Accordingly, it has been advocated that KTA studies should treat research knowledge and local practical knowledge with analytical impartiality. The purpose of this case report is to illustrate the complexities in an evidence-informed improvement process of organized stroke care in a local rehabilitation setting. CASE DESCRIPTION: A participatory action approach was used to co-create knowledge and engage local therapists in a 2-way knowledge translation and multidirectional learning process. Evidence regarding rehabilitation stroke units was applied in a straightforward manner, as the setting met the criteria articulated in stroke unit reviews. Evidence on early supported discharge (ESD) could not be directly applied because of differences in target group and implementation environment between the local and reviewed settings. Early supported discharge was tailored to the needs of patients severely affected by stroke admitted to the local rehabilitation stroke unit by combining clinical and home rehabilitation (CCHR). OUTCOMES: Local therapists welcomed CCHR because it helped them make their task-specific training truly context specific. Key barriers to implementation were travel time, logistical problems, partitioning walls between financing streams, and legislative procedures. DISCUSSION: Improving local settings with available evidence is not a straightforward application process but rather a matter of searching, logical reasoning, and creatively working with heterogeneous knowledge sources in partnership with different stakeholders. Multiple organizational levels need to be addressed rather than focusing on therapists as sole site of change.

Incorporating self-management in prosthetic rehabilitation: case report of an integrated knowledge-to-action process.

BACKGROUND: In improvement of clinical practice, unidirectional approaches of translating evidence into clinical practice have been pinpointed as main obstacles. The concept of engaged scholarship has been introduced to guide knowledge-to-action (KTA) processes, in which research knowledge and practical knowledge derived from therapists, patients, and organizational structures mutually inform each other. Accordingly, KTA experts should engage end-users earlier in knowledge translation and work in concert with them on both knowledge creation and knowledge implementation. PURPOSE: The purposes of this case report are: (1) to provide an illustrative example of an evidence-informed improvement process in prosthetic rehabilitation in a local setting and (2) to articulate the bidirectional translation work incorporated into an integrated KTA process. CASE DESCRIPTION: A KTA expert translated research knowledge on self-management and task- and context-specific training into a functional prosthetic training program for patients with a lower limb amputation. Therapists contributed as co-creators to the translation process with practical knowledge of the specificities of the target group and local organizational context. The KTA expert moved the co-created knowledge into action in iterative and interactive steps with local therapists, patients, and managers. OUTCOME: This bidirectional KTA translation process led to shared ownership of the functional prosthetic training program, in which self-management and task- and context-specific training principles and practices were integrated. DISCUSSION: Bidirectional knowledge translation builds on explicating and integrating the different knowledge practices of researchers, therapists, and their patients. Knowledge-to-action experts and end-users have their own roles and activities in such knowledge translation processes. Appreciating these different roles in genuine partnerships and acknowledging the distinct but equally valued knowledge practices can help in effectively translating evidence into action.

Functional performance, participation and autonomy after discharge from prosthetic rehabilitation: barriers, facilitators and outcomes.

OBJECTIVE: To examine functional performance, participation and autonomy after discharge from prosthetic rehabilitation and to identify the barriers and facilitators affecting these outcomes. DESIGN: Concurrent mixed-methods design. Quantitative and qualitative data were collected at discharge from rehabilitation, and 3 and 6 months later. The data were integrated during analysis. SUBJECTS: Thirteen patients with a unilateral lower limb amputation participating for the first time in prosthetic rehabilitation in a Dutch rehabilitation centre. METHODS: Functional performance was measured using the Two-Minute Walk Test and L test, and participation and autonomy using the Impact on Participation and Autonomy questionnaire. Barriers and facilitators were identified in semi-structured interviews. RESULTS: After discharge, 9 out of 13 patients declined in functional performance. The principal problems in participation were observed in the "autonomy outdoors" and "family role" domains. Many factors affected functioning and participation and many differences were observed in the way that factors acted as barriers or facilitators for individual patients. No time patterns were found for barriers and facilitators. CONCLUSION: Post-discharge, distinctive fluctuations were observed in functional performance and participation and autonomy in patients with lower limb amputation. It is recommended that patients are educated about these fluctuations and the barriers and facilitators identified in the environmental, personal and medical contexts.

Reconsidering evidence-based practice in prosthetic rehabilitation: a shared enterprise.

BACKGROUND: A divide is experienced between producers and users of evidence in prosthetic rehabilitation. OBJECTIVE: To discuss the complexity inherent in establishing evidence-based practice in a prosthetic rehabilitation team illustrated by the case of prosthetic prescription for elderly dysvascular transfemoral amputee patients. STUDY DESIGN: A qualitative research design was used, in which data from multiple sources was triangulated to extract themes for discussion. METHODS: This discussion paper draws on empirical material gathered by individual and focus-group interviews with members of a prosthetic rehabilitation team, information on technological advancements presented on websites of orthopaedic industry, guidelines and literature study. RESULTS: A prosthetic rehabilitation team needs to deal with lack of evidence, contradictory results, various classification systems, diverging interests of different stakeholders and many modifying factors, and all of this in a continuous technological changing environment. Integrating research designs with different strengths but not sharing the same biases may help researchers to deal with the multimorbidity and multifaceted disability of the target group. Articulating clinical knowledge, patients' needs and values in a systematic way provides depth, detail, nuance and context for evidence-based practice issues in prosthetic rehabilitation. CONCLUSIONS: Reconsidering the relationship between evidence, technology and rehabilitation practice is an imperative shared enterprise for clinicians and researchers. Scientific, clinical and patient-related knowledge are seen as important knowledge practices that should inform and strengthen each other. CLINICAL RELEVANCE: This discussion paper puts the academic clinical debate on evidence-based practice in prosthetics and orthotics in another light. By demonstrating the complexities surrounding evidence-based practice, it is argued and illustrated how both researchers and clinicians can contribute to optimal patient care in which evidence, technology and rehabilitation practice are integrated.

Improving rehabilitation treatment in a local setting: a case study of prosthetic rehabilitation.

OBJECTIVE: To contribute to the discussion on the research-practice gap by illustrating obstacles and opportunities that arise in an evidence-informed improvement process of prosthetic rehabilitation in a local setting. SETTING: Dutch rehabilitation centre. PRESUPPOSITION: The improvement process was considered as a two-way translation process rather than a unidirectional process of knowledge transfer between science and practice. METHOD: Case study and participatory research methods comprising documentary analysis, treatment observations, individual and focus groups interviews, and literature studies. A qualitative software program (Atlas-ti) was used to triangulate the collected data. RESULTS: The main concern of local practitioners was identified to be the post-discharge decline in functional capacity in elderly amputees. This was related to a predominantly biomedical and biomechanical approach, and accompanying traditional therapist-patient interactions. The content and underpinnings of prosthetic treatments were scarcely specified in either the scientific literature or the local setting. Generic principles and practices from other fields were useful for treatment innovation for post-discharge problems, such as task- and context-specific training and self-management education. A circuit training focused on motor learning and a problem-solving training focused on social learning were developed by integrating amputation-specific knowledge. CONCLUSION: Improving rehabilitation practice with the use of available evidence is a heterogeneous and multifaceted scientific enterprise. Such an enterprise requires as much self-reflexivity from researchers as from practitioners.

Distinguishing theories of dysfunction, treatment and care. Reflections on 'describing rehabilitation interventions'.

BACKGROUND: An editorial by Wade (Clinical Rehabilitation 2005; 19: 811-18) suggested a method for describing rehabilitation interventions. OBJECTIVE: To review the editorial critically, and to suggest a more complete theory. EDITORIAL: The editorial develops a model identifying factors that should be considered when analysing a complex rehabilitation problem, and provides a high-level description of the rehabilitation process. It explicitly does not address theories of behaviour change. NEW IDEAS: Three additional theoretical models are needed. The first considers the mechanisms that link the factors identified in Wade's model. For example how does self-esteem (in personal context) actually influence activity performance? This is a theory of dysfunction. The second needs to discuss how treatments alter their target. For example how does cognitive behavioural therapy alter pain perception and/or alter activity performance? This is a theory of treatment. It may be related to the theory of dysfunction. The third, which is less certain, needs to consider the process of giving support (maintaining the status quo). For example, how should one offer continuing opportunities for meaningful social role performance to someone with major cognitive losses? This is a theory of care. CONCLUSION: The two models that Wade integrated in his conceptual framework (the World Health Organization's International Classification of Functioning (WHO ICF) and the rehabilitation process) should primarily be considered as descriptive in character. Theories are still needed to understand how activity limitation arises and how treatments alter activity limitation, and possibly how a patient is supported to maintain a certain level of activity.