The psychometric properties of the PROMIS® profile CAT in people with stroke.

BACKGROUND: The Patient-Reported Outcomes Measurement Information System® (PROMIS) Profile Computer Adaptive Testing (CAT) consists of seven CATs and one single item measuring most relevant aspects of health-related quality of life (HRQoL). The aim of our study was to determine construct validity and floor and ceiling effects of the PROMIS Profile CAT in Dutch people with stroke. METHODS: People with stroke receiving rehabilitation completed the PROMIS Profile CAT and the EuroQol-5 dimensions (EQ5D). Construct validity was evaluated with hypotheses testing based on expected correlations between the profile domains and the domains of the EQ5D. The proportion of participants with the lowest and highest scores were calculated for each profile domain to assess floor and ceiling effects. RESULTS: 160 participants were included (median age 61 years, 41.9% female). For the PROMIS Profile domains Physical Function, Anxiety, Depression, Sleep Disturbance, Pain Interference, and Pain Intensity > 75% of the results met our hypotheses. For Fatigue and Ability to Participate in Social Roles and Activities only 60% of hypotheses were met. No floor or ceiling effects were found, with the exception of a floor effect for Pain Intensity which probably indicates that many participants had no pain. CONCLUSION: Most domains of the PROMIS Profile CAT showed sufficient construct validity and no problematic floor or ceiling effects in people with stroke. These CATs and the single item Pain Intensity can be used to efficiently measure HRQoL in people with stroke.

The trajectory of pain and pain intensity in the upper extremity after stroke over time: a prospective study in a rehabilitation population.

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 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.IMPLICATIONS FOR REHABILITATIONAbout one-third of patients with stroke reported upper extremity pain at 30 months after starting rehabilitation.In patients with stroke who reported persistent upper extremity pain, there was no significant change in pain intensity over time.There is room for improvement of diagnosis and treatment of upper extremity pain in patients with stroke.

Stroke survivors' long-term participation in paid employment.

BACKGROUND: Knowledge on long-term participation is scarce for patients with paid employment at the time of stroke. OBJECTIVE: Describe the characteristics and the course of participation (paid employment and overall participation) in patients who did and did not remain in paid employment. METHODS: Patients with paid employment at the time of stroke completed questions on work up to 30 months after starting rehabilitation, and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P, Frequency, Restrictions and Satisfaction scales) up to 24 months. Baseline characteristics of patients with and without paid employment at 30 months were compared using Fisher's Exact Tests and Mann-Whitney U Tests. USER-P scores over time were analysed using Linear Mixed Models. RESULTS: Of the 170 included patients (median age 54.2 interquartile range 11.2 years; 40% women) 50.6% reported paid employment at 30 months. Those returning to work reported at baseline more working hours, better quality of life and communication, were more often self-employed and in an office job. The USER-P scores did not change statistically significantly over time. CONCLUSION: About half of the stroke patients remained in paid employment. Optimizing interventions for returning to work and achieving meaningful participation outside of employment seem desirable.

Translation and cross-cultural adaptation of the ICHOM standard set for stroke: the Dutch version.

INTRODUCTION: The 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. METHODS: Two 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. RESULTS: The 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. CONCLUSIONS: A 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.

Patient Activation During the First 6 Months After the Start of Stroke Rehabilitation.

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: 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.

Societal burden of stroke rehabilitation: Costs and health outcomes after admission to stroke rehabilitation.

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. DESIGN: Observational. PATIENTS: Consecutive patients who received medical specialist rehabilitation in the Stroke Cohort Outcomes of REhabilitation (SCORE) study. 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 rehabilitation costs were extracted from the medical and financial records, respectively. 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 inpatients, utility (an expression of quality of life) increased significantly between baseline and 6 months (EQ-5D-3L 0.66-0.73, p = 0.01; visual analogue scale 0.77-0.82, p < 0.001) and between baseline and 12 months (visual analogue scale 0.77-0.81, p < 0.001). CONCLUSION: One-year societal costs from after the start of rehabilitation in stroke patients were considerable. 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.

Caregiver burden after stroke: changes over time?

Introduction and aim: Many caregivers of stroke patients experience a high burden. This study aims to describe the course of burden in individual caregivers in the first year after stroke.Methods: This study is part of the Stroke Cohort Outcomes of REhabilitation study, a multicentre, longitudinal cohort study including consecutive stroke patients admitted to two rehabilitation facilities. Caregivers were asked to complete the Caregiver Strain Index and questions on their sociodemographic characteristics 6 and 12 months post admission. Patients' sociodemographic and clinical characteristics were extracted from medical records.Results: A total of 129 caregivers were included, 72 completed the Caregiver Strain Index twice. Of them, 19 (26.4%) were men, median age 59 (range 27-78) years. A consistently high or low burden was reported by 15 (20.8%) and 49 (68.1%), respectively, whereas 8 (11.1%) reported a high burden at either 6 (n = 3) or 12 months (n = 5).Discussion: In the majority of caregivers of stroke patients the perceived caregiver burden is consistent over time. However, as in 11.1% caregiver burden changes from 6 to 12 months, caregiver burden should be measured repeatedly until 12 months after stroke. Caregivers living together with a patient who suffered a haemorrhagic stroke seem to be more at risk for a high burden.Implications for rehabilitationMany caregivers of stroke patients experience a high burden.The Caregiver Strain Index score at 6 months is a good predictor for the score at 12 months.In some caregivers the high burden is not yet present at 6 months, therefore monitoring caregiver burden throughout the first year after stroke seems warranted.Caregivers living together with a patient who suffered a haemorrhagic stroke seem to be more at risk for a high burden.

Comparison of the responsiveness of the Utrecht Scale for Evaluation of Rehabilitation (USER) and the Barthel Index in stroke patients.

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 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.

Goal-setting in multidisciplinary team care for patients with rheumatoid arthritis: an international multi-center evaluation of the contents using the International Classification of Functioning, Disability and Health as a reference.

OBJECTIVE: To make a cross-cultural comparison of the contents of rehabilitation goals of patients admitted for rehabilitation and to compare the contents with the comprehensive International Classification of Functioning, Disability and Health (ICF) Core Set for rheumatoid arthritis, by linking their contents to the ICF. PATIENTS: A random sample of 80 patients with rheumatoid arthritis was retrieved from rehabilitation clinics in 4 countries. METHODS: Rehabilitation goals were extracted from the medical records and linked to the ICF using standardized linking rules. RESULTS: A total of 495 rehabilitation goals were identified and linked to 952 ICF codes, resulting in 151 unique ICF codes. Two-hundred and seventy-five (29%) of the 952 ICF codes were related to "Body Functions" (b-codes), 80 (8%) to "Body Structures" (s-codes), 419 (44%) to "Activities and Participation" (d-codes) and 178 (19%) to "Environmental Factors" (e-codes). Thirty-five of the 151 unique ICF codes (23%) were not in the comprehensive ICF Core Set for RA, whereas 23 of the ICF codes in this Core Set (24%) were not in the rehabilitation goals. CONCLUSION: The goals set in a team rehabilitation setting for patients with rheumatoid arthritis are related to all ICF components, with "Activities and Participation" being the most frequently addressed. The contents of the goals are, to a considerable extent, covered by the comprehensive ICF Core Set for RA, but additional evaluation is required before the ICF Core Set is used as a rehabilitation tool in rheumatoid arthritis.