IntroductionThe International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of patient-centered outcome measures for use in stroke patients. In addition to the Patient... Show moreIntroductionThe International Consortium for Health Outcomes Measurement (ICHOM) developed a standard set of patient-centered outcome measures for use in stroke patients. In addition to the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health, it is comprised of 25 questions that are not part of a specific questionnaire. This study aimed to translate these 25 single questions into Dutch.MethodsTwo native Dutch-speaking translators independently translated the original ICHOM questions into Dutch. A consensus translation was made by these translators and a third person. This translation was subsequently translated back to English independently by two native English-speaking translators. Afterwards a pre-final version was made by consensus of a committee. After field-testing among 30 stroke patients, a final version was made.ResultsThe forward and backward translations led to eight cross-cultural adaptations. Based on the interviews with stroke patients, 12 questions were changed to enhance comprehensibility leading to a final Dutch translation of the 25 single questions.ConclusionsA Dutch translation of the 25 single questions of the ICHOM Standard Set for Stroke was developed. Now a complete ICHOM Standard Set for Stroke can be used in Dutch populations allowing comparison and improvement of stroke care. Show less
This thesis describes the wide range of long-term consequences in stroke patients who received multidisciplinary rehabilitation.Over a third of them reported pain in the shoulder, arm, wrist or... Show moreThis thesis describes the wide range of long-term consequences in stroke patients who received multidisciplinary rehabilitation.Over a third of them reported pain in the shoulder, arm, wrist or hand. About the same percentage had low patient activation scores, which is a prerequisite for effective self-management to cope with the consequences of stroke. Almost half of patients who were working before the stroke managed to maintain paid employment for two and a half years. These patients were more satisfied with their participation than patients who did not return to work. Average independence in daily activities increased during rehabilitation. The Barthel Index was found to be more sensitive to measure change than the Utrecht Scale for Evaluation of Rehabilitation. Health-related quality of life increased on average from start of rehabilitation to one year afterwards. The average social costs in the first year were €63,045 for inpatients and €24,533 for outpatients. The burden of the nearest of stroke patients was investigated, which showed that a third of them experienced a high burden.In conclusion, the consequences of stroke can also remain present, worsen or develop in the long term and are present for the individual patient, their nearest and the healthcare system. Show less
Meijeren-Pont, W. van; Arwert, H.; Volker, G.; Fiocco, M.; Achterberg, W.P.; Vlieland, T.P.M.V.; ... ; Stroke Cohort Outcomes REhabil (SCORE) Study Group 2023
Purpose: To assess the presence of upper extremity pain after stroke over time and the course of its intensity in patients with persistent pain. Materials and methods: Patients with stroke... Show morePurpose: To assess the presence of upper extremity pain after stroke over time and the course of its intensity in patients with persistent pain. Materials and methods: Patients with stroke completed a question on the presence of upper extremity pain (yes/no) and rated its intensity with a visual analogue scale (0-10) at 3, 18, and 30 months after starting multidisciplinary rehabilitation. The presence of upper extremity pain and its intensity over time were analysed with Generalized Estimating Equations models and Linear Mixed Models, respectively. Results: 678 patients were included. The proportions of patients reporting upper extremity pain were 41.8, 36.0, and 32.7% at 3, 18, and 30 months, respectively, with the decline in proportions reaching statistical significance (odds ratio 0.82, 95% confidence interval 0.74-0.92, p < 0.001). At all time points, in those reporting pain the median intensity was 5.0 (interquartile ranges (IQR) 4.0-7.0 at 3 and 3.0-6.0 at 18 and 30 months). In the 73 patients with persistent pain, there was no significant change in intensity over time. Conclusions: The proportion of patients reporting upper extremity pain after stroke was considerable, despite a significant decrease in 2.5 years. In patients reporting persistent pain, the intensity did not change over time. Show less
Meijeren-Pont, W. van; Tamminga, S.J.; Fiocco, M.; Avila, A.G.; Volker, G.; Janssen, S.M.J.; ... ; Grp 2022
Objective: To examine patient activation from the start of stroke rehabilitation and its course up until the 6-month follow-up. Design: Inception cohort study with a follow-up of 6 months. Setting:... Show moreObjective: To examine patient activation from the start of stroke rehabilitation and its course up until the 6-month follow-up. Design: Inception cohort study with a follow-up of 6 months. Setting: Multidisciplinary rehabilitation facility. Participants: A total of 478 patients (N=478) with stroke who received inpatient or outpatient rehabilitation, with a median age of 63.0 years (interquartile range, 56.0-70.0 years) with 308 (64.2%) being men. The study was completed by 439 patients (91.8%). Interventions: Not applicable. Main Outcome Measures: Patient activation was measured with the Patient Activation Measure (PAM) (score 0-100, 4 levels, where a higher score and level denotes more patient activation). The PAM was measured at the start of the rehabilitation (baseline) and 3 and 6 months thereafter and was analyzed using the multivariate mixed model analysis. Results: At baseline, the mean PAM score was 60.2 +/- 14.3, with the number of patients in PAM levels 1, 2, 3, and 4 being 76 (17.8%), 85 (19.9%), 177 (41.4%), and 90 (21.0%), respectively. The multivariate mixed-model analysis demonstrated that the PAM score increased over time (baseline 60.2 +/- 14.3 vs 3 months 60.7 +/- 14.8 vs 6 months 61.9 +/- 18.0; P.007). Between baseline and 6 months, 122 patients (41.4%) remained at the same PAM level, 105 patients (35.6%) increased, and 68 patients (23.1%) decreased. At all time points, > 35% of patients were in level 1 or 2. Conclusions: PAM scores increased slightly over time from the start of rehabilitation up to the 6-month follow-up. However, more than one-third of patients remained at low levels (ie, level 1 and 2) of patient activation, which indicates that specific interventions during rehabilitation to increase patient activation might be of value. Archives of Physical Medicine and Rehabilitation 2022;103:1360-7 (c) 2022 by the American Congress of Rehabilitation Medicine. Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/) Show less
Objective: To estimate societal costs and changes in health-related quality of life in stroke patients, up to one year after start of medical specialist rehabilitation.& nbsp; Design:... Show moreObjective: To estimate societal costs and changes in health-related quality of life in stroke patients, up to one year after start of medical specialist rehabilitation.& nbsp; Design: Observational.& nbsp; Patients: Consecutive patients who received med ical specialist rehabilitation in the Stroke Cohort Out-comes of REhabilitation (SCORE) study.& nbsp; Methods: Participants completed questionnaires on health-related quality of life (EuroQol EQ-5D-3L), absenteeism, out-of-pocket costs and healthcare use at start and end of rehabilitation and 6 and 12 months after start. Clinical characteristics and reha-bilitation costs were extracted from the medical and financial records, respectively.& nbsp; Results: From 2014 to 2016 a total of 313 stroke patients completed the study. Mean age was 59 (standard deviation (SD) 12) years, 185 (59%) were male, and 244 (78%) inpatients. Mean costs for inpatient and outpatient rehabilitation were US$70,601 and US$27,473, respectively. For in-patients, utility (an expression of quality of life) in-creased significantly between baseline and 6 months (EQ-5D-3L 0.66 & ndash;0.73, p = 0.01; visual analogue scale 0.77 & ndash;0.82, p < 0.001) and between baseline and 12 months (visual analogue scale 0.77 & ndash;0.81, p < 0.001).& nbsp; Conclusion: One-year societal costs from after the start of rehabilitation in stroke patients were con-siderable. Future research should also include costs prior to rehabilitation. For inpatients, health-related quality of life, expressed in terms of utility, improved significantly over time. Show less
Meijeren-Pont, W. van; Volker, G.; Vlieland, T.V.; Goossens, P. 2019
Objective: To compare the responsiveness of the Utrecht Scale for Evaluation of Rehabilitation (USER) to the responsiveness of the Barthel Index in stroke patients in an inpatient rehabilitation... Show moreObjective: To compare the responsiveness of the Utrecht Scale for Evaluation of Rehabilitation (USER) to the responsiveness of the Barthel Index in stroke patients in an inpatient rehabilitation facility. Design: Observational study. Setting: Inpatient rehabilitation facility. Subjects: Consecutive stroke patients admitted for clinical rehabilitation. Interventions: Not applicable. Main measures: The USER and the Barthel Index were administered by a nurse at admission and discharge. The Effect Size and Standardized Response Mean (SRM) were calculated as measures of responsiveness. Results: From 198 (78%) of the 254 patients who were included in the study period, both admission and discharge data were available. At admission the mean score of the USER subscale Functional independence was 43.1 (SD = 18.9) and at discharge the mean score was 59.3 (SD = 13.8). The mean score of the Barthel Index at admission was 13.3 (SD = 5.4) and at discharge 18.4 (SD = 3.3). The Effect Size of the USER subscales Mobility, Self-care, Cognitive functioning, Pain, Fatigue and Mood were 0.85, 0.77, 0.48, 0.19, 0.40 and 0.28, respectively, and of the Barthel Index 0.94. The results for the SRM were in the same range. Conclusion: In inpatient rehabilitation after stroke, the USER was less responsive than the Barthel Index. Show less
Groeneveld, I.F.; Goossens, P.H.; Meijeren-Pont, W. van; Arwert, H.J.; Meesters, J.J.L.; Mishre, A.D.R.; ... ; SCORE Study Grp 2019
ObjectiveTo describe the illness perceptions (IP) of stroke patients in the first year post stroke; to identify patient clusters with comparable IP trajectories and determine their associations... Show moreObjectiveTo describe the illness perceptions (IP) of stroke patients in the first year post stroke; to identify patient clusters with comparable IP trajectories and determine their associations with health. MethodsThis prospective study included consecutive stroke patients after medical rehabilitation. Three and 12 months post stroke they completed the Brief Illness Perception Questionnaire (B-IPQ) and questionnaires on physical and mental health. All eight IP and their changes over time were described. Clusters of patients with comparable IP trajectories were constructed by k-means clustering, with subsequent comparison of patient characteristics. Multivariable logistic regression analyses were conducted to determine the association between IP clusters and 12-month mental health. Results Hundred-and-eighty-four patients were included (men n = 107 [58.2%]; mean age 61.1 [SD 12.7] years). At 3 months, the scores of the IP coherence (mean 3.0, SD 2.3) and treatment control (mean 3.2, SD 2.5) were lowest (best), and consequences (mean 6.1, SD 2.8) and anticipated timeline (mean 6.0, SD 2.7) were highest (worst). At 12 months, the timeline and treatment control scores had significantly worsened. Three clusters of the trajectories of IP were identified, and designated as ‘favourable’, ‘average’, and ‘unfavourable’. The unfavourable cluster was significantly associated with worse physical and mental health at 3 months (unadjusted) and depressive symptoms at 12 months. ConclusionStroke patients' IP partly changed between 3 and 12 months post stroke. Patients with an unfavourable IP trajectory had a higher chance of depressive symptoms at 12 months. Illness perceptions could be considered as an additional target of treatment. Show less
