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.
Rationale, aims and objective: Primary Care Plus (PC+) focuses on the substitution of hospital-based medical care to the primary care setting without moving hospital facilities. The aim of this study was to examine whether population health and experience of care in PC+ could be maintained. Therefore, health-related quality of life (HRQoL) and experienced quality of care from a patient perspective were compared between patients referred to PC+ and to hospital-based outpatient care (HBOC). Methods: This cohort study included patients from a Dutch region, visiting PC+ or HBOC between December 2014 and April 2018. With patient questionnaires (T0, T1 and T2), the HRQoL and experience of care were measured. One-to-two nearest neighbour calliper propensity score matching (PSM) was used to control for potential selection bias. Outcomes were compared using marginal linear models and Pearson chi-square tests. Results: One thousand one hundred thirteen PC+ patients were matched to 606 HBOC patients with well-balanced baseline characteristics (SMDs <0.1). Regarding HRQoL outcomes, no significant interaction terms between time and group were found (P > .05), indicating no difference in HRQoL development between the groups over time. Regarding experienced quality of care, no differences were found between PC+ and HBOC patients. Only travel time was significantly shorter in the HBOC group (P ≤ .001). Conclusion: Results show equal effects on HRQoL outcomes over time between the groups. Regarding experienced quality of care, only differences in travel time were found. Taken as a whole, population health and quality of care were maintained with PC+ and future research should focus more on cost-related outcomes.
Purpose: This research aimed to explore factors associated with patient-reported breast and abdominal scar quality after deep inferior epigastric perforator (DIEP) flap breast reconstruction (BR). Material and Methods: This study was designed as a descriptive cross-sectional survey in which women after DIEP flap BR were invited to complete an online survey on breast and abdominal scarring. The online survey was distributed in the Netherlands in several ways in order to reach a diverse population of women. Outcomes were assessed with the Patient Scale of the Patient and Observer Scar Assessment Scale (POSAS). Additional items were assessed with a numeric rating scale (NRS). Results: A total of 248 women completed the survey. There was a statistically significant worse POSAS scar appraisal for the abdominal scar compared with the breast scar. The vast majority of women reported high scores on at least one scar characteristic of their breast scar or ab- dominal scar. Overall, color, stiffness, thickness, and irregularity scored higher than pain and itching. Women were only moderately positive about the size, noticeability, location, and the information provided regarding scarring. Conclusion: It is crucial to address the inevitability of scars in patient education before a DIEP flap BR, with a particular focus on the abdominal scar, as women experience abdominal scars significantly worse than their breast scars. Providing more information on the experience of other women and the expected appearance will contribute to having realistic expectations while allowing them to make well-informed decisions.
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.
