Het Stroke Cohort Outcomes of REhabilitation (SCORE)-onderzoek bestaat tien jaar. Dit observationele onderzoek van Basalt volgt patiënten met een beroerte. Aanvankelijk was het doel om uitkomsten, praktijkvariatie in proces en structuur, en kosten te meten. Momenteel is het onderzoek meer gericht op meeteigenschappen van nieuwere Patient-Reported Outcome Measures (PROMs). In dit artikel geven we een overzicht van de resultaten van het SCORE-onderzoek met gerichte aanbevelingen en blikken we vooruit.
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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.
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Purpose: This study aims to systematically identify items that measure comnicative participation from measurement instruments that measure (aspects communication and/or participation in children and adolescents (5–18 years with communication disorders, for developing an item bank. Method: A systematic literature search was performed in MEDLINE Embase to search for patient-reported outcome measures (PROMs) or pareports measuring aspects of communication and/or participation in childand adolescents. The individual items of the included measurement instrumwere reviewed on whether they measure communicative participation. The itwere then classified into one of the International Classification of FunctioDisability and Health (ICF) for Children and Youth (World Health Organiza2007) domains of activities and participation. Results: A total of 29 instruments were found, nine PROMs and 20 preports. One hundred forty-five items were identified that measure communtive participation. From these 145 items, 74 were retrieved from PROMs (5and 71 were retrieved from parent reports (49%). The majority of items classified in ICF Domain 7, interpersonal interactions and relationships (73.8followed by Domain 8, major life areas (13.8%), and Domain 9, commsocial, and civic life (8.3%). Only a few items were found in Domains 5 and none was found in Domains 1, 2, and 4. Conclusions: We identified 145 items potentially useful for developing an bank addressing communicative participation in children and adolescents communication disorders. However, item development in collaboration with target population is needed to ensure that these items fully reflect the const.
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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 (
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Purpose: This study aims to systematically identify items that measure commu-nicative participation from measurement instruments that measure (aspects of) communication and/or participation in children and adolescents (5–18 years old) with communication disorders, for developing an item bank. Method: A systematic literature search was performed in MEDLINE and Embase to search for patient-reported outcome measures (PROMs) or parent reports measuring aspects of communication and/or participation in children and adolescents. The individual items of the included measurement instruments were reviewed on whether they measure communicative participation. The items were then classified into one of the International Classification of Functioning, Disability and Health (ICF) for Children and Youth (World Health Organization, 2007) domains of activities and participation. Results: A total of 29 instruments were found, nine PROMs and 20 parent reports. One hundred forty-five items were identified that measure communica-tive participation. From these 145 items, 74 were retrieved from PROMs (51%), and 71 were retrieved from parent reports (49%). The majority of items were classified in ICF Domain 7, interpersonal interactions and relationships (73.8%), followed by Domain 8, major life areas (13.8%), and Domain 9, community, social, and civic life (8.3%). Only a few items were found in Domains 5 and 6, and none was found in Domains 1, 2, and 4. Conclusions: We identified 145 items potentially useful for developing an item bank addressing communicative participation in children and adolescents with communication disorders. However, item development in collaboration with the target population is needed to ensure that these items fully reflect the construct.
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Meten is weten. Daar zijn we het allemaal over eens. Maar hoe zorg je er voor dat je op het goede moment en met het juiste meetinstrument een zinvolle meting doet? Meten is immers geen doel op zich. Onlangs kwam een nieuwe uitgave van het boek Meten in de praktijk: Stappenplan voor het gebruik van meetinstrumenten in de praktijk uit. Hoog tijd om stil te staan bij meten in de dagelijkse ergotherapiepraktijk en daar een stappenplan voor te presenteren.
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The traditional paternalistic approach in health care is increasingly developing towards a patient-centered care (PCC) approach. However, not all patients are able to take advantage of the positive effects of PCC. Inadequate health literacy (HL) is an important limiting factor in the ability of patients to take on an active role and exchange information with their health care provider effectively. A provenly effective approach to improvement of provider-patient interaction and health outcomes is the use of health-related questionnaires. The aim of the research project described within this thesis was to adapt the most frequently-used questionnaire in Dutch physical therapy practice and add information and communication technology to it. A Dutch and Turkish version of the tool called Talking Touch Screen Questionnaire (TTSQ) was developed and evaluated on both usability and validity aspects. The current prototype of the tool does not yet fully solve the problems native and minority patients with low (health) literacy have with completing the adapted questionnaire. Big challenges in future development and testing the TTSQ are the recruitment of vulnerable members of the hard-to-reach native and minority target populations and finding research methods that suit the abilities and needs of these participants. This is expected to be a very challenging, labor- and time-consuming process. On the other hand, having a usable, valid and reliable TTSQ may well save a lot of time and money in both research and clinical practice in the future.
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Communicative participation is the most important outcome of speech and language therapy, but there are no measurement instruments for children, adolescents, and young adults. This paper describes the development of MyCommunication-Youth: an item bank to measure self-reported communicative participation in children, adolescents and young adults with various communication disorders.
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There is a need to assess communication in daily life situations for people with speech and language disorders. Although language proficiency and communication in daily life are correlated, their relationship is far from linear or straightforward. This paper aims to demonstrate the usefulness of the construct of communicative participation by unravelling the relationship and overlap between participation and communication. We explored the relationship between communication, participation, and communicative participation by reviewing common definitions mentioned in the literature. Next, we evaluated to what extent communication plays a role in each of the World Health Organization’s International Classification of Functioning (ICF) “Activity and Participation” chapters by counting how many items in each chapter should be considered for describing communicative participation.
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Abstract Background: Lifestyle interventions for severe mental illness (SMI) are known to have small to modest efect on physical health outcomes. Little attention has been given to patient-reported outcomes (PROs). Aim: To systematically review the use of PROs and their measures, and quantify the efects of lifestyle interventions in patients with SMI on these PROs. Methods: Five electronic databases were searched (PubMed/Medline, Embase, PsycINFO, CINAHL, and Web of Science) from inception until 12 November 2020 (PROSPERO: CRD42020212135). Randomised controlled trials (RCTs) evaluating the efcacy of lifestyle interventions focusing on healthy diet, physical activity, or both for patients with SMI were included. Outcomes of interest were PROs. Results: A total of 11.267 unique records were identifed from the database search, 66 full-text articles were assessed, and 36 RCTs were included, of which 21 were suitable for meta-analyses. In total, 5.907 participants were included across studies. Lifestyle interventions had no signifcant efect on quality of life (g=0.13; 95% CI=−0.02 to 0.27), with high heterogeneity (I2 =68.7%). We found a small efect on depression severity (g=0.30, 95% CI=0.00 to 0.58, I2 =65.2%) and a moderate efect on anxiety severity (g=0.56, 95% CI=0.16 to 0.95, I2 =0%). Discussion: This meta-analysis quantifes the efects of lifestyle interventions on PROs. Lifestyle interventions have no signifcant efect on quality of life, yet they could improve mental health outcomes such as depression and anxiety symptoms. Further use of patient-reported outcome measures in lifestyle research is recommended to fully capture the impact of lifestyle interventions.
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