Background: The use of patient-reported outcomes to improve burn care increases. Little is known on burn patients’ views on what outcomes are most important, and about preferences regarding online Patient Reported Outcome Measures (PROMs). Therefore, this study assessed what outcomes matter most to patients, and gained insights into patient preferences towards the use of online PROMs. Methods: Adult patients (≥18 years old), 3–36 months after injury completed a survey measuring importance of outcomes, separately for three time periods: during admission, short-term (< 6 months) and long-term (6–24 months) after burn injury. Both open and closed-ended questions were used. Furthermore, preferences regarding the use of patient-reported outcome measures in burn care were queried. Results: A total of 140 patients were included (response rate: 27%). ‘Not having pain’ and ‘good wound healing’ were identified as very important outcomes. Also, ‘physical functioning at pre-injury level’, ‘being independent’ and ‘taking care of yourself’ were considered very important outcomes. The top-ten of most important outcomes largely overlapped in all three time periods. Most patients (84%) had no problems with online questionnaires, and many (67%) indicated that it should take up to 15 minutes. Patients’ opinions differed widely on the preferred frequency of follow-up. Conclusions: Not having pain and good wound healing were considered very important during the whole recovery of burns; in addition, physical functioning at pre-injury level, being independent, and taking care of yourself were deemed very important in the short and long-term. These outcomes are recommended to be used in burn care and research, although careful selection of outcomes remains crucial as patients prefer online questionnaires up to 15 minutes.
Purpose: This systematic review aimed to provide a comprehensive overview of the validity and reliability of existing measurement instruments for quantifying head and neck lymphedema. Methods: Four databases were searched on January 31st, 2022. The COnsensus-based Standards for selecting health Measurement INstruments (COSMIN) checklists were used for the risk of bias (ROB) assessment. Results: Out of 3362 unique records, eight studies examined the reliability and validity of five measurement instruments of which one patient reported outcome. The Patterson scale for internal lymphedema and the patient reported head and neck external lymphedema and fibrosis (LIDS-H&N) demonstrated validity and reliability. For external lymphedema, none of the instruments had good reliability for all measuring points. Conclusion: There is a lack of sufficiently reliable and valid measurement instruments for external head and neck lymphedema. The Patterson scale and the patient reported LIDS-H&N seem reliable for clinical practice and research.
Background. Adequate and user-friendly instruments for assessing physical function and disability in older adults are vital for estimating and predicting health care needs in clinical practice. The Late-Life Function and Disability Instrument Computer Adaptive Test (LLFDICAT) is a promising instrument for assessing physical function and disability in gerontology research and clinical practice. Objective. The aims of this study were: (1) to translate the LLFDI-CAT to the Dutch language and (2) to investigate its validity and reliability in a sample of older adults who spoke Dutch and dwelled in the community. Design. For the assessment of validity of the LLFDI-CAT, a cross-sectional design was used. To assess reliability, measurement of the LLFDI-CAT was repeated in the same sample. Methods. The item bank of the LLFDI-CAT was translated with a forward-backward procedure. A sample of 54 older adults completed the LLFDI-CAT, World Health Organization Disability Assessment Schedule 2.0, RAND 36-Item Short-Form Health Survey physical functioning scale (10 items), and 10-Meter Walk Test. The LLFDI-CAT was repeated in 2 to 8 days (mean4.5 days). Pearson’s r and the intraclass correlation coefficient (ICC) (2,1) were calculated to assess validity, group-level reliability, and participant-level reliability. Results. A correlation of .74 for the LLFDI-CAT function scale and the RAND 36-Item Short-Form Health Survey physical functioning scale (10 items) was found. The correlations of the LLFDI-CAT disability scale with the World Health Organization Disability Assessment Schedule 2.0 and the 10-Meter Walk Test were .57 and .53, respectively. The ICC (2,1) of the LLFDI-CAT function scale was .84, with a group-level reliability score of .85. The ICC (2,1) of the LLFDI-CAT disability scale was .76, with a group-level reliability score of .81. Limitations. The high percentage of women in the study and the exclusion of older adults with recent joint replacement or hospitalization limit the generalizability of the results. Conclusions. The Dutch LLFDI-CAT showed strong validity and high reliability when used to assess physical function and disability in older adults dwelling in the community.
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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.
In dit project werkt het lectoraat Bewegen, Gezondheid en Welzijn van Hogeschool Windesheim samen met kennisinstellingen, jeugdzorginstellingen, beroepsverenigingen en een oudervereniging. Het betreft organisaties voor de jeugd-ggz. Bij de behandeling van kinderen in de jeugd-ggz wordt de bijdrage van psychomotorisch therapeuten (PMT-ers) hoog gewaardeerd door cliënten, ouders en collega-behandelaren. De concrete en ervaringsgerichte manier van werken van PMT-ers vormt een belangrijk onderdeel van het palet aan behandelingen binnen de jeugd-ggz. PMT-ers hebben een grote behoefte aan informatie over de effecten van hun therapie. Door een gebrek aan instrumenten om behandeldoelen van PMT zoals de herkenning en regulatie van spanning en emoties en de verbetering van lichaamsbeleving te meten, is het voor hen echter niet mogelijk om: - het behandelresultaat van psychomotorische therapie (PMT) binnen de jeugd-ggz vast te stellen; - het verloop van een behandeling te monitoren en bespreekbaar te maken; - met de betrokken kinderen en hun naasten samen te beslissen over het vervolgtraject; - te voldoen aan de toenemende vraag naar de evidentie van PMT binnen de jeugd-ggz. Het doel van dit project is om PMT-ers kennis over meetinstrumenten in de vorm van Patient-reported Outcomes Measures (PROMs) te verschaffen waarmee zij voornoemde praktijkproblemen kunnen aanpakken. Dat leidt tot de volgende tweeledige onderzoeksvraag: 1) Welke PROMs kunnen worden ingezet om het specifieke resultaat van PMT bij kinderen in de jeugd-ggz op een gestandaardiseerde en valide wijze te meten? 2) Op welke wijze kan de toepassing van deze PROMs bijdragen aan Shared Decision Making in het kader van uitkomstgerichte zorg? Beoogde resultaten zijn: - databank met Nederlandstalige gevalideerde meetinstrumenten die als PROMs kunnen dienen ter evaluatie van psychomotorische interventies in jeugd-ggz; - digitaal portal voor de beroepsgroep; - trainingsaanbod voor PMT-ers over gebruiken van PROMs in jeugd-ggz; - trainingsaanbod voor PMT-ers over inzetten van Shared Decision Making in jeugd-ggz.
In dit project werkt het lectoraat ‘Bewegen, gezondheid en welzijn’ samen met de Hogeschool Arnhem Nijmegen, Hogeschool Zuyd, de Vrije Universiteit, de Universiteit van Maastricht, het UMC Groningen, drie GGZ instellingen (Universitair Centrum Psychiatrie Groningen (UCP), GGZ Friesland en GGZ Drenthe), de Nederlandse Vereniging voor Psychomotorische Therapie en het Landelijk Platform Geestelijke Gezondheidzorg (LPGGZ, nu ook MIND). De projectdoelstelling is: Het verwerven van nieuwe kennis over de ontwikkeling en implementatie van specifieke uitkomstmaten waarmee de impact van psychomotorische interventies binnen de GGZ gemonitord en geëvalueerd kan worden en de samenwerking met de betrokken patiënt wordt versterkt. Aanleiding voor dit project zijn praktijkvragen van psychomotorisch therapeuten werkzaam in de GGZ. Zij geven aan behoefte te hebben aan nieuwe kennis en meetinstrumenten waarmee ze: 1. het behandelresultaat en de toenemende vraag naar evidentie van psychomotorische therapie (PMT) )vast kunnen stellen; 2. het beloop van de behandeling kunnen monitoren en bespreekbaar kunnen maken met de betrokken patiënt. Op basis van de beschikbare literatuur over behandelevaluaties werd de volgende onderzoeksvraag geformuleerd: ‘Hoe kunnen Patient Reported Outcome Measures (PROMs) voor psychomotorische therapie ontwikkeld en ingezet worden om het specifieke resultaat van psychomotorische therapie bij volwassen patiënten in de GGZ gestandaardiseerd te evalueren en wat kan de bijdrage zijn van dagboekmetingen via Experience Sampling Methods (ESM)?’. Het project richt zich op: 1. Selectie, onderzoek en onderbouwing van PMT specifieke PROMS. 2. Onderzoeken van de haalbaarheid van de inzet van ESM als evaluatiemethode binnen de PMT. 3. De ontwikkeling van een digitale portal. Beoogde resultaten zijn: • Databank van Nederlandstalige meetinstrumenten die als PROMs kunnen dienen ter evaluatie van pychomotorische interventies en die zijn opgenomen in een portal dat beschikbaar komt voor de beroepsgroep. • Handboek over het inzetten van ESM binnen PMT. • Cursussen over het gebruik van de PROMs en het gebruik van ESM.
