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

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.</p

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. (c) 2017 Elsevier B.V. All rights reserved

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

Linking scientific and clinical knowledge practices: Innovation for prosthetic rehabilitation

De afgelopen decennia heeft het wetenschappelijk onderzoek naar revalidatieprogramma’s een grote vlucht genomen. Toch bereikt de wetenschappelijke kennis maar mondjesmaat de revalidatiepraktijk. Onderzoekers zeggen vaak dat dit komt omdat een wetenschappelijke werk- en denkhouding in de revalidatiepraktijk onvoldoende aanwezig is. Behandelaars vinden juist dat veel onderzoeksvragen niet aansluiten bij problemen waar zij in de praktijk mee worstelen. Dit proefschrift laat aan de hand van een casestudy zien hoe door een zorgvuldige mix van onderzoeksmethodologie, conceptuele analytische en veranderkundige vaardigheden deze verdeeldheid wordt voorkomen. De studie start met een praktijkvraag van een revalidatieteam dat volwassenen met een beenamputatie behandeld, namelijk: ‘Hoe al in het revalidatiecentrum te anticiperen op een terugval in functioneren met de prothese thuis?’ Zelfmanagement en motorische leertheorieën uit respectievelijk de chronisch zieken- en neuro-revalidatie bleken een inspiratiebron. Maar hoe deze theorieën te vertalen in praktische handvatten voor behandelaars, die actieve participatie van hun patiënten willen stimuleren? Een vergelijkende inhoudsanalyse van zelfmanagement- en revalidatiegeneeskundige literatuur gaf inzicht in hoe zelfmanagementeducatie een plek kon krijgen in de amputatierevalidatie. Een combinatie van kwalitatief en kwantitatief onderzoek bevestigde niet alleen de terugval in functioneren thuis, maar belichtte ook het waarom van de terugval, vanuit de ervaringskennis van patiënten. Met behulp van het ‘Knowledge-To-Action’-vertalingsmodel werden de verschillende soorten kennis op een analytisch onpartijdige manier geïntegreerd tot een zelfmanagementtraining bestaande uit een motorisch en psycho-educatief deel . Deze co-creatie tussen het onderzoeksteam, behandelaars en patiënten leidde tot gedeeld eigenaarschap en een handboek van de zelfmanagementtraining, die nu onderdeel is van de lokale reguliere amputatierevalidatie

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

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

PDF-file from transcript of a focus group with persons with major unilateral upper limb defects (n = 11). In the focus group participants were first asked which matters/factors influenced their prosthesis choice. Second, they were asked which matters/factors were important for them when using a prosthesis. Last, participants were shown a framework containing themes and subthemes that could be important when selecting a prosthesis (on large posters) and were asked if they understood and agreed with the shown themes and subthemes of the framework. The focus group was conducted in the Dutch language and was organized in April 2019. To not compromise the participant's privacy some details about the participants of the focus group were not shown in the transcript

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