Background: The integrated uptake of patient-reported experience measures, using outcomes for the micro, meso and macro level, calls for a successful implementation process which depends on how stakeholders are involved in this process. Currently, the impact of stakeholders on strategies to improve the integrated use is rarely reported, and information about how stakeholders can be engaged, including care-users who are communication vulnerable, is limited. This study illustrates the impact of all stakeholders on developing tailored implementation strategies and provides insights into supportive conditions to involve care-users who are communication vulnerable. Methods: With the use of participatory action research, implementation strategies were co-created by care-users who are communication vulnerable (n = 8), professionals (n = 12), management (n = 6) and researchers (n = 5) over 9 months. Data collection consisted of audiotapes, reports, and researchers’ notes. Conventional content analysis was performed. Results: The impact of care-users concerned the strategies’ look and feel, understandability and relevance. Professionals influenced impact on how to use strategies and terminology. The impact of management was on showing the gap between policy and practice, and learning from previous improvement failures. Researchers showed impact on analysis, direction of strategy changes and translating academic and development experience into practice. The engagement of care-users who are communication vulnerable was supported, taking into account organisational issues and the presentation of information. Conclusions: The impact of all engaged stakeholders was identified over the different levels strategies focused on. Care-users who are communication vulnerable were valuable engaged in co-creation implementation strategies by equipping them to their needs and routines, which requires adaptation in communication, delimited meetings and a safe group environment. Trial registration: Reviewed by the Medical Ethics Committee of Zuyderland-Zuyd (METCZ20190006). NL7594 registred at https://www.trialregister.nl/. Plain English summary Exploring care-users experiences is important for decisions to improve quality of care. This applies to care-users in the disability care in particular, as these care-users are highly dependent on their care professional. Instruments that facilitate a dialogue between care-users and care professionals about experiences with care are not always used correctly. Furthermore, it is difficult to translate outcomes into decisions about improving quality of care for the individual care-user and the organisation. In our study, care-users, care professionals, management and researchers developed strategies together to improve the use of care-user experience measures. This study aims to show the impact of all participants, including care-users, professionals, management and researchers, on developing implementation strategies. Additionally, the study aims to show how care-users can participate in developing strategies whilst having problems with communication due to intellectual, developmental and acquired disabilities. We found that care-users gave crucial input to the look and feel, and understandability and relevance of the strategies. The contribution of the professionals had impact on how to use strategies and terminology used in instructions and visuals. Management shared lessons learned and represented the needs on the policy level. Researchers used their analytical skills and facilitated the group process. Care-users were able to collaborate by taking into account their needs and because information was presented to them clearly and attractively.
ObjectiveFirst, to make an inventory of activity limitations commonly reported by knee osteoarthritis (OA) patients undergoing multidisciplinary rehabilitation. Second, to evaluate treatment outcome using the Patient Specific Functional Scale (PSFS) and compare it to the Western Ontario and McMasters Universities Osteoarthritis Index physical function subscale (WOMAC-pf).DesignAn observational study with assessments before and immediately after multidisciplinary rehabilitation. Five hundred and thirteen patients used the PSFS, a patient-reported tool to identify activity limitations and score the patient's ability to perform the activity on an 11-point Numeric Rating Scale (NRS), to report three activities in which they were limited. Frequencies and percentages of their highest-prioritized activity were calculated and categorized according to the International Classification of Functioning, Disability, and Health (ICF). Paired-samples T-tests were used to analyze the change in ability to perform the activities. Effect sizes of PSFS and WOMAC-pf were compared.ResultsMost patients indicated limitations in walking, walking up/down stairs, prolonged standing, and standing up from a chair. Following these common activities, 26 different activities were identified. The majority of these highest-prioritized activities fell under the first-level ICF category of Mobility. The ability to perform all activities significantly improved after treatment. Effect sizes ranged between 0.60 and 0.97 and were greater than the effect size of the WOMAC-pf (0.41).ConclusionKnee OA patients who undergo multidisciplinary rehabilitation exhibit improvements in performing daily activities. The PSFS is a valuable tool to evaluate patient-specific activity limitations and seems to capture improvements in activity limitations beyond the WOMAC-pf.
Background: Outcome assessment is essential to understand the impact and recovery of burns of the hand and tailor treatment. There is however, a large variety of measures and outcome assessment is often incomplete. The aim was therefore to initiate a set of outcome assessments for use in a clinical setting. Method: A concept set was drafted, based on the framework of the International Classification of Functioning, which distinguished two phases, three patient states and included both patient reported and clinical outcomes. Subsequently, potential assessments were allocated to the various outcomes. This concept was discussed during the European Burns Association congress in 2013 and revised. The revision was sent to 65 colleagues from 28 institutions, accompanied by a survey. Results: Eleven surveys were returned from 16 persons representing 9 institutions from 6 countries. Based on the feedback, final revisions were made. Points raised were time investment and translations of not all assessments already available. Conclusions: With multidisciplinary and international input, a multidimensional set of outcome assessments for burns of the hand has been established, covering almost all domains of functioning. This first step towards more uniform clinical evaluation, will contribute to knowledge on outcome and effectiveness of treatment of hand burns.
Chronische jeuk is één van de tien meest onderschatte medische problemen in Nederland. Het komt bij één op de vier mensen ooit in het leven voor. Krabben geeft direct verlichting, maar irriteert de huid en verergert de jeuk, waardoor je nog meer gaat krabben. In dit project worden nieuwe manieren onderzocht om jeuk te verlichten en de jeuk-krab-jeukcyclus te doorbreken.Doel Het doel van dit project is om meer inzicht te genereren in factoren die een rol spelen in de jeuk-krab-jeuk cyclus en in mogelijkheden deze cyclus te doorbreken en hiermee de behandelopties voor jeukklachten te verbeteren. Resultaten Dit project zal een bijdrage leveren aan het begrijpen van de invloeden op en de behandeling van chronische jeuk d.m.v. het doorbreken van de jeuk-krab-jeukcyclus. Relevantie De inzichten die opgedaan worden in dit project kunnen direct geïntegreerd worden in de onderwijspraktijk voor huidtherapeuten, zodat ook patiënten direct kunnen profiteren. Studenten van de opleiding Huidtherapie en studenten Psychologie aan de Rijksuniversiteit Groningen participeren in dit project. Looptijd 01 september 2018 - 01 september 2024 Aanpak Onderzocht wordt of virtual reality (VR) een effectief middel is om de sensatie van jeuk te verminderen en of VR ingezet kan worden om een patiënt toch ‘virtueel’ te laten krabben aan een jeukende plek. Tenslotte wordt de effectiviteit van een ‘slimme ring’, die vibreert als een patiënt wil gaan krabben, onderzocht. Omdat het meten van jeuk essentieel is bij het beoordelen van de effecten van interventies/ omgevingen op jeuk, wordt ook onderzoek gedaan naar de inhoudsvaliditeit van meetinstrumenten voor chronische jeuk vanuit patiënten perspectief (Patient-Reported Outcome Measures (PROM)). Downloads en links
Chronische jeuk is één van de tien meest onderschatte medische problemen in Nederland. Het komt bij één op de vier mensen ooit in het leven voor. Krabben geeft direct verlichting, maar irriteert de huid en verergert de jeuk, waardoor je nog meer gaat krabben. In dit project worden nieuwe manieren onderzocht om jeuk te verlichten en de jeuk-krab-jeukcyclus te doorbreken.
communicative participation, language disordersOBJECTIVE(S)/RESEARCH QUESTION(S) Speech and language therapists (SLTs) are the primary care professionals to treat language and communication disorders. Their treatment is informed by a variety of outcome measures. At present, diagnosis, monitoring of progress and evaluation are often based on performance-based and clinician-reported outcomes such as results of standardized speech, language, voice, or communication tests. These tests typically aim to capture how well the person can produce or understand language in a controlled situation, and therefore only provide limited insight in the person’s challenges in life. Performance measures do not incorporate the unobservable feelings such as a patient's effort, social embarrassment, difficulty, or confidence in communication. Nor do they address language and communication difficulties experienced by the person themselves, the impact on daily life or allow patients to set goals related to their own needs and wishes. The aim of our study is give our patients a voice and empower SLTs to incorporate their patient's perspective in planning therapy. We will Aangemaakt door ProjectNet / Generated by ProjectNet: 08-12-2020 12:072Subsidieaanvraag_digitaal / Grant Application_digitaalDossier nummer / Dossier number: 80-86900-98-041DEFINITIEFdevelop a valid and reliable patient-reported outcome measure that provides information on communicative participation of people with communication disorders and integrate this item bank in patient specific goal setting in speech and language therapy. Both the item bank and the goal setting method will be adapted in cocreation with patients to enable access for people with communication difficulties.STUDY DESIGN Mixed methods research design following the MRC guidance for process evaluation of complex interventions, using PROMIS methodology including psychometric evaluation and an iterative user-centered design with qualitative co-creation methods to develop accessible items and the goal setting method.RESEARCH POPULATION Children, adolescents and adults with speech, language, hearing, and voice disorders.OUTCOME MEASURES An online patient-reported outcome measure on communicative participation, the Communicative Participation Item Bank (CPIB), CPIB items that are accessible for people with language understanding difficulties, a communicative-participation person-specific goal setting method developed with speech and language therapists and patients and tested on usability and feasibility in clinical practice, and a course for SLTs explaining the use of the goal-setting method in their clinical reasoning process.RELEVANCE This study answers one of the prioritized questions in the call for SLTs to systematically and reliably incorporate the clients’ perspective in their daily practice to improve the quality of SLT services. At present patient reported outcomes play only a small role in speech and language therapy because 1) measures (PROMS) are often invalid, not implemented and unsuitable for clinical practice and 2) there is a knowledge gap in how to capture and interpret outcomes from persons with language disorders.
