Cross-cultural adaptation and psychometric testing of the Dutch and German versions of the Evaluation of Daily Activity Questionnaire in people with rheumatoid arthritis.

The Evaluation of Daily Activity Questionnaire (EDAQ) is a detailed patient-reported outcome measure of activity ability. The objective of this research was to assess the linguistic and cross-cultural validity and psychometric properties of the EDAQ in rheumatoid arthritis for Dutch and German speakers. The EDAQ was translated into Dutch and German using standard methods. A total of 415 participants (Dutch n = 252; German n = 163) completed two questionnaires about four weeks apart. The first included the EDAQ, Health Assessment Questionnaire (HAQ) and 36-item Short-Form v2 (SF-36v2) and the second, the EDAQ only. We examined construct validity using Rasch analysis for the two components (Self-Care and Mobility) of the Dutch and German EDAQ. Language invariance was also tested from the English version. We examined internal consistency, concurrent and discriminant validity and test-retest reliability in the 14 EDAQ domains. The Self-Care and Mobility components satisfied Rasch model requirements for fit, unidimensionality and invariance by language. Internal consistency for all 14 domains was mostly good to excellent (Cronbach's alpha ≥ 0.80). Concurrent validity was mostly strong: HAQ rs = 0.65-0.87; SF36v2 rs = - 0.61 to - 0.87. Test-retest reliability was excellent [ICC (2,1) = 0.77-0.97]. The EDAQ has good reliability and validity in both languages. The Dutch and German versions of the EDAQ can be used as a measure of daily activity in practice and research in the Netherlands and German- speaking countries.

Correction to: Differences in factors influencing the use of eRehabilitation after stroke; a cross-sectional comparison between Brazilian and Dutch healthcare professionals.

An amendment to this paper has been published and can be accessed via the original article.

Differences in factors influencing the use of eRehabilitation after stroke; a cross-sectional comparison between Brazilian and Dutch healthcare professionals.

BACKGROUND: To improve the use of eRehabilitation after stroke, the identification of barriers and facilitators influencing this use in different healthcare contexts around the world is needed. Therefore, this study aims to investigate differences and similarities in factors influencing the use of eRehabilitation after stroke among Brazilian Healthcare Professionals (BHP) and Dutch Healthcare Professionals (DHP). METHOD: A cross-sectional survey study including 88 statements about factors related to the use of eRehabilitation (4-point Likert scale; 1-4; unimportant-important/disagree-agree). The survey was conducted among BHP and DHP (physical therapists, rehabilitating physicians and psychologists). Descriptive statistics were used to analyse differences and similarities in factors influencing the use of eRehabilitation. RESULTS: ninety-nine (response rate 30%) BHP and 105 (response rate 37%) DHP participated. Differences were found in the top-10 most influencing statements between BHP and DHP BHP rated the following factors as most important: sufficient support from the organisation (e.g. the rehabilitation centre) concerning resources and time, and potential benefits of the use of eRehabilitation for the patient. DHP rated the feasibility of the use of eRehabilitation for the patient (e.g. a helpdesk and good instructions) as most important for effective uptake. Top-10 least important statements were mostly similar; both BHP and DHP rated problems caused by stroke (e.g. aphasia or cognitive problems) or problems with resources (e.g. hardware and software) as least important for the uptake of eRehabilitation. CONCLUSION: The results indicate that the use of eRehabilitation after stroke by BHP and DHP is influenced by different factors. A tailored implementation strategy for both countries needs to be developed.

Health Care Use and Its Associated Factors 5-8 Years after Stroke.

OBJECTIVES: To describe health care use and its associated factors in the chronic phase after stroke. METHODS: Patients completed a questionnaire on health care use, 5-8 years after hospital admission for stroke. It comprised the number of visits to physicians or other health care professionals over the past 6 months (Physician-visits; Low ≤1 or High ≥2) and other health care professionals (Low = 0 or High ≥ 1). In addition the Longer-term Unmet Needs after Stroke (LUNS), Frenchay Activity Index (FAI) and Physical and Mental Component Summary Scales of the Short Form 12 (PCS and MCS) were administered. Their associations with health care use (high, low) were determined by means of logistic regression analysis, adjusted for sex and age. RESULTS: Seventy-eight of 145 patients (54%) returned the questionnaires; mean time-since-stroke was 80.3 months (SD10.2), age-at-stroke 61.7 years (SD13.8), and 46 (59%) were male. Physician contacts concerned mainly the general practitioner (58; 79.5%). Forty-one (52.6%) and 37 (47.4%) of the patients had a high use of physician and other health professionals visits, respectively. Worse PCS scores were associated with both high use of physician and other health professionals visits (OR .931; 95%CI .877-.987 and OR .941; 95%CI .891-.993, respectively), whereas the FAI, MCS, or LUNS were not related to health care use. CONCLUSIONS: Health care use after stroke is substantial and is related to physical aspects of health status, not to mental aspects, activities or unmet needs, suggesting a mismatch between patients' needs and care delivered.

How to best distribute written patient education materials among patients with rheumatoid arthritis: a randomized comparison of two strategies.

BACKGROUND: The aim of this randomized controlled trial was to evaluate the effect of a 'supply on demand'-distribution strategy, compared to an 'unsolicited supply'-distribution strategy, on the use of a care booklet and clinical outcomes among patients with rheumatoid arthritis (RA). In addition, differences in socio-demographic and clinical characteristics between users and non-users were explored. METHODS: As part of regular care the care booklet was distributed among RA-patients of two hospitals in the Netherlands. 1000 patients received the care booklet by mail, whereas another 1000 received an information letter with the option to order the care booklet. Four months after distribution, a random sample of 810 patients (stratified by hospital and distribution method) received a questionnaire on the use of the booklet, social-demographic and clinical characteristics. To compare effects between the two distribution strategies and differences between users and non-users univariate and multilevel regression analyses were performed. Secondary analysis included a per-protocol analysis (excluding participants who did not order the care booklet). RESULTS: One hundred ninety four patients in the 'unsolicited supply' and 176 patients in the 'supply on demand' group (46%) returned the questionnaire. In the 'supply on demand' group 106 (60.2%) participants ordered the care booklet. In total, no difference was found in use between the 'unsolicited supply'-group (23.2%) and the 'supply on demand'-group (21.6%) (OR 0.9 CI:0.6-1.5). However, the proportion of users among patients in the 'supply on demand'-group who ordered the booklet (35%) was significantly higher than in the 'unsolicited supply'-group (OR 1.9 CI:1.1-3.2). Regardless of distribution method, use of the care booklet was associated with being married (OR 2.4 CI:1.2-4.6), higher disease activity (mean difference 0.5 CI: 0.0-1.1), more activity limitations (mean difference 0.2 CI: 0.1-0.4), use of corticosteroids (OR 1.9 CI:1.0-3.5), perception of disease course as fluctuating (mean difference 1.4 CI:0.5-2.3) and higher educational needs (mean difference 9.7 CI: 2.9-16.6). CONCLUSIONS: From an economic and environmental perspective a 'supply on demand'-distribution strategy could be recommended. Results of this study provide starting points to optimize further implementation strategies of a care-booklet in routine care. TRIAL REGISTRATION: ISRCTN registry ( ISRCTN22703067 ). Retrospectively registered 27 March 2017.

Validity of the Michigan Hand Outcomes Questionnaire in Patients With Stroke.

OBJECTIVE: To investigate the measurement properties of the Dutch version of the Michigan Hand Outcomes Questionnaire (MHQ) in patients with stroke. DESIGN: Validation study. SETTING: Outpatient rehabilitation clinic. PARTICIPANTS: Consecutive patients with stroke (N=51; mean age, 60±11y; 16 women [31%]). INTERVENTIONS: Patients were asked to complete the MHQ (57 items) and Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36). Additional assessments included the Barthel Index and performance tests for hand function (Action Research Arm Test, Nine Hole Peg Test, Frenchay Arm Test, Motricity Index). MAIN OUTCOME MEASURES: Associations between the MHQ and other outcome measures were determined using Spearman correlation coefficients and the internal consistency of the MHQ using Cronbach α. Floor or ceiling effects were present if >15% of the patients scored minimal or maximal scores, respectively. Test-retest reliability was established by the intraclass correlation coefficient. RESULTS: The mean MHQ total score was 70.0±22.4, with Cronbach α being .97. The MHQ total score correlated significantly with the physical component summary of the SF-36, the Barthel Index, and all hand function performance tests (P<.01). The MHQ total score showed no floor or ceiling effects. The test-retest intraclass correlation coefficient was .97. CONCLUSIONS: This study provides preliminary evidence that the MHQ is an internally consistent, valid, and reliable hand function questionnaire in outpatients after stroke, although these results need to be further confirmed.

The educational needs of people with systemic sclerosis: a cross-sectional study using the Dutch version of the Educational Needs Assessment Tool (D-ENAT).

The Dutch Educational Needs Assessment Tool (D-ENAT) systematically assesses educational needs of patients with rheumatic diseases. The present study aims to describe the educational needs of Dutch patients with systemic sclerosis (SSc). The D-ENAT was sent to 155 SSc patients registered at the outpatient clinic of a university hospital. The D-ENAT consists of 39 items in seven domains. "Each domain has different number of items therefore we normalized each domain score: (domain score/maximum) × 100) and expressed in percentage to enable comparisons between domains." A total D-ENAT score (0-156) is calculated by summing all 39 items. In addition, age, disease duration, gender, educational level, present information need (yes/no) and information need (1-4; wanting to know nothing-everything) were recorded. Univariate regression analysis was used to examine factors associated with the D-ENAT scores. The response rate was 103 out of 155 (66 %). The mean % of educational needs scores (0-100 %; lowest-highest) were 49 % for "D-ENAT total score," 46 % for "Managing pain," 41 % for "Movement," 43 % for "Feelings," 59 % for "Disease process," 44 % for "Treatments from health professionals," 61 % for "Self-help measures" and 51 % for "Support systems." No associations between the D-ENAT total score and age, disease duration, gender and educational level were found. The D-ENAT demonstrated its ability to identify educational needs of Dutch SSc patients. SSc patients demonstrated substantial educational needs, especially in the domains: "Disease process" and "Self-help measures." The validity and practical applicability of the D-ENAT to make an inventory of SSc patients' educational needs require further investigation.

Problems in Functioning in Patients with Chronic Musculoskeletal Pain Admitted for Multidisciplinary Rehabilitation.

BACKGROUND: Little is known about the extent to which improvements in various problem areas are attained after multidisciplinary rehabilitation program in patients with chronic musculoskeletal pain (CMP). AIM: To describe the pre- and postcontents of problems in functioning from the Canadian Occupational Performance Measure (COPM) in terms of the International Classification of Functioning, Disability and Health (ICF) in CMP patients following a 15-week rehabilitation program. METHODS: In all patients admitted to a rehabilitation program, the COPM was administered at admission and discharge. The problems identified at admission were linked to ICF chapters using an established linking procedure. Changes of COPM Performance/Satisfaction scores (1-10; low-high) with 95% confidence intervals (CIs) were calculated, and effect sizes (ESs) were computed. RESULTS: In total, 165 patients were included with a mean age of 44.1 (SD 12.9) years; among them, 143 (87%) were women. At admission, totally 801 problems were identified and linked to 706 unique ICF categories: 83 (12%) were related to the ICF component "Body Functions" and 621 (88%) to "Activities and Participation". ICF chapters "d4 Mobility" (124, 18%) and "d9 Community social and civic life" (143, 20%) were most frequently identified. The median changes of the COPM total scores for Performance and Satisfaction were 2.1 (95% CI 1.9 to 2.3, ES: 1.75) and 3.2 (95% CI 2.9 to 3.4, ES: 2.38). CONCLUSION: A 15-week multidisciplinary treatment program showed that most problems were seen within chapters Mobility and Community life of the ICF. The program led to significant improvements of patient reported problems, the magnitude of which was similar for all different problem areas.

Determinants of participation of youth with acquired brain injury: A systematic review.

OBJECTIVES: Participation is considerably restricted in children and adolescents with acquired brain injury (ABI) as compared to their healthy peers. This systematic review aims to identify which factors are associated with participation in children and adolescents with ABI. METHODS: A systematic search in Medline and various other electronic databases from January 2001-November 2014 was performed. All clinical studies describing determinants of participation at least 1 year after the diagnosis of ABI by means of one or more pre-defined instruments in patients up to 18 years of age were included. Extracted data included study characteristics, patient characteristics, participation outcome and determinants of participation (categorized into: health conditions (including characteristics of ABI), body functions and structures, activities, personal factors and environmental factors). The methodological quality of the studies was evaluated based on three quality aspects (selection, information and statistical analysis bias) and scored as low, moderate or high. RESULTS: Eight studies using an explicit participation outcome measure were selected after review, including a total of 1863 patients, with a follow-up ranging from 1 up to 288 months. Three studies included patients with a traumatic or a non-traumatic brain injury (TBI or NTBI) and five studies with only TBI patients. Factors consistently found to be associated with more participation restrictions were: greater severity of ABI, impaired motor, cognitive, behavioural and/or sensory functioning, limited accessibility of the physical environmentand worse family functioning. Fewer participation problems were associated with a supportive/nurturing parenting style, higher household income, acceptance and support in the community and availability of special programmes. The overall methodological quality of the included studies was high in two and moderate in six studies. CONCLUSION: This systematic review shows that only a few, moderate quality, studies on the determinants of participation after paediatric ABI using recommended explicit measurement instruments are available. Various components of the ICF model: health condition, body functions and structures and environmental factors were consistently found to be associated with participation. More methodologically sound studies, using the recommended explicit outcome measures, a standardized set of potential determinants and long-term follow-up are suggested to increase the knowledge on participation in children and youth with ABI.

Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries.

OBJECTIVES: To validate the educational needs assessment tool (ENAT) as a generic tool for assessing the educational needs of patients with rheumatic diseases in European Countries. METHODS: A convenience sample of patients from seven European countries was included comprising the following diagnostic groups: ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematosus, osteoarthritis (OA) and fibromyalgia syndrome. Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group. RESULTS: The sample comprised 3015 patients; the majority, 1996 (66.2%), were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item-trait interaction χ(2) p<0.05). After correction for local dependency (grouping the items into seven domains and analysing them as 'testlets'), fit to the model was satisfied (item-trait interaction χ(2) p>0.18) in all pooled disease group datasets except OA (χ(2)=99.91; p=0.002). The internal consistency in each group was high (Person Separation Index above 0.90). There was no significant DIF by person characteristics. Cross-cultural DIF was found in some items, which required adjustments. Subsequently, interval-level scales were calibrated to enable transformation of ENAT scores when required. CONCLUSIONS: The adapted ENAT is a valid tool with high internal consistency providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible.

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.

Functional disability in patients with rheumatoid arthritis admitted for multidisciplinary rehabilitation from 1992 to 2009.

OBJECTIVE: Advances in pharmacological care for RA have in general reduced functional disability. However, subgroups of patients may need treatment by a multidisciplinary team. This study aimed to describe the levels of functional ability and outcomes of patients with RA admitted for multidisciplinary rehabilitation in the past 20 years. METHODS: Data from three observational studies including four cohorts (1, 1992; 2a, 2001; 2b, 2003 and 3, 2008) on outcomes of multidisciplinary rehabilitation for RA patients conducted in one Dutch rheumatology clinic were used. Baseline and change scores of the HAQ were compared using a one-way analysis of variance with post hoc multiple comparisons (Bonferroni correction). RESULTS: The mean HAQ scores were 1.94 (s.d. 0.74) for cohort 1, 1.40 (0.74) and 1.39 (0.66) for cohorts 2a and 2b, respectively, and 1.49 (0.59) for cohort 3, with the difference between cohort 1 on the one side and cohorts 2a/2b and 3 on the other side being statistically significant (P < 0.01). The mean changes in HAQ score between admission and discharge were 0.24 (s.d. 0.50) for cohort 1, 0.17 (0.49) for cohort 2a, 0.15 (0.37) for cohort 2b and 0.25 (0.46) for cohort 3. CONCLUSION: The level of functional disability of RA patients admitted for multidisciplinary rehabilitation decreased between 1992 and 2001. The magnitude of improvement in functional ability during admission was in the same range in all three periods. These results suggest that in the era of MTX and biologics there are patients with RA who have considerable disability and benefit from multidisciplinary rehabilitation.

Educational readiness among health professionals in rheumatology: low awareness of EULAR offerings and unfamiliarity with the course content as major barriers-results of a EULAR-funded European survey.

BACKGROUND: Ongoing education of health professionals in rheumatology (HPR) is critical for high-quality care. An essential factor is education readiness and a high quality of educational offerings. We explored which factors contributed to education readiness and investigated currently offered postgraduate education, including the European Alliance of Associations for Rheumatology (EULAR) offerings. METHODS AND PARTICIPANTS: We developed an online questionnaire, translated it into 24 languages and distributed it in 30 European countries. We used natural language processing and the Latent Dirichlet Allocation to analyse the qualitative experiences of the participants as well as descriptive statistics and multiple logistic regression to determine factors influencing postgraduate educational readiness. Reporting followed the Checklist for Reporting Results of Internet E-Surveys guideline. RESULTS: The questionnaire was accessed 3589 times, and 667 complete responses from 34 European countries were recorded. The highest educational needs were 'professional development', 'prevention and lifestyle intervention'. Older age, more working experience in rheumatology and higher education levels were positively associated with higher postgraduate educational readiness. While more than half of the HPR were familiar with EULAR as an association and the respondents reported an increased interest in the content of the educational offerings, the courses and the annual congress were poorly attended due to a lack of awareness, comparatively high costs and language barriers. CONCLUSIONS: To promote the uptake of EULAR educational offerings, attention is needed to increase awareness among national organisations, offer accessible participation costs, and address language barriers.

The outcomes of a vocational rehabilitation and mentorship program in unemployed young adults with acquired brain injury.

BACKGROUND: Persons with disabilities are at risk for unemployment with negative long-term consequences. OBJECTIVE: This study aimed to explore the process and outcomes of a novel vocational rehabilitation (VR) program based on the concept of mentorship. METHODS: Observational, retrospective study including unemployed young adults with acquired brain injury (ABI) taking part in a VR program including assessment, training, individual counselling and mentor support from volunteering professionals. Adherence to the program and work status were registered and at follow-up all patients were invited to complete a general questionnaire and EuroQol 5D. RESULTS: 49 patients started the program, with 41 completing the follow-up. Median age was 31 years and 19 were male. Median duration of the program was 8 months. At follow-up, 9 patients had acquired paid employment, 7 with the support of a mentor; 6 of whom were bothered by health problems at work. Nine patients left the program prematurely, with insufficient financial support for continuation being the primary reason for withdrawal (n = 6). CONCLUSIONS: A VR program including a mentor may be a promising program for patients who are unemployed at onset of ABI. Lack of financial support to complete the program and concurrent health problems were found to hamper the process and outcomes of the program, respectively.

What works and why in the implementation of eRehabilitation after stroke - a process evaluation.

BACKGROUND: Implementation of an eRehabilitation intervention named Fit After Stroke @Home (Fast@home) - including cognitive/physical exercise applications, activity-tracking, psycho-education - after stroke resulted in health-related improvements. This study investigated what worked and why in the implementation. METHODS: Implementation activities (information provision, integration of Fast@home, instruction and motivation) were performed for 14 months and evaluated, using the Medical Research Council framework for process evaluations which consists of three evaluation domains (implementation, mechanisms of impact and contextual factors). Implementation activities were evaluated by field notes/surveys/user data, it's mechanisms of impact by surveys and contextual factors by field notes/interviews among 11 professionals. Surveys were conducted among 51 professionals and 73 patients. User data (n = 165 patients) were extracted from the eRehabilitation applications. RESULTS: Implementation activities were executed as planned. Of the professionals trained to deliver the intervention (33 of 51), 25 (75.8%) delivered it. Of the 165 patients, 82 (49.7%) were registered for Fast@home, with 54 patient (65.8%) using it. Mechanisms of impact showed that professionals and patients were equally satisfied with implementation activities (median score 7.0 [IQR 6.0-7.75] versus 7.0 [6.0-7.5]), but patients were more satisfied with the intervention (8.0 [IQR 7.0-8.0] versus 5.5 [4.0-7.0]). Guidance by professionals was seen as most impactful for implementation by patients and support of clinical champions and time given for training by professionals. Professionals rated the integration of Fast@home as insufficient. Contextual factors (financial cutbacks and technical setbacks) hampered the implementation. CONCLUSION: Main improvements of the implementation of eRehabilitation are related to professionals' perceptions of the intervention, integration of eRehabilitation and contextual factors.Implication for rehabilitationTo increase the use of eRehabilitation by patients, patients should be supported by their healthcare professional in their first time use and during the rehabilitation process.To increase the use of eRehabilitation by healthcare professionals, healthcare professionals should be (1) supported by a clinical champion and (2) provided with sufficient time for learning to work and getting familiar with the eRehabilitation program.Integration of eRehabilitation in conventional stroke rehabilitation (optimal blended care) is an important challenge and a prerequisite for the implementation of eRehabilitation in the clinical setting.

The course of depressive symptoms in the first 12 months post-stroke and its association with unmet needs.

AIM: To describe the course of depressive symptoms during the first 12 months post-stroke and its association with unmet needs. METHODS: A prospective cohort study among stroke patients admitted to inpatient rehabilitation. Depressive symptoms were assessed 3, 6, and 12 months post-stroke using the Hospital Anxiety and Depression Scale, and categorized into three trajectories: no (all times <8), non-consistent (one or two times ≥8), or persistent (all times ≥8) depressive symptoms. Unmet needs were assessed using the Longer-Term Unmet Needs questionnaire. Multivariable logistic regression analyses were used to investigate the association between depressive symptoms and unmet needs. RESULTS: One hundred and fifty-one patients were included, of whom 95 (62.9%), 38 (25.2%), and 18 (11.9%) had no, non-consistent, or persistent depressive symptoms, respectively. Depressive symptoms three months post-stroke persisted in 43.9% and recurred in 19.5% of patients during the first 12 months post-stroke. Depressive symptoms were significantly associated with the occurrence and number of unmet needs (odds ratio 6.49; p = 0.003 and odds ratio 1.28; p = 0.005, respectively). CONCLUSIONS: Depressive symptoms three months post-stroke were likely to persist or recur during the first 12 months post-stroke. Depressive symptoms are associated with unmet needs. These results suggest that routine monitoring of depressive symptoms and unmet needs should be considered post-stroke.Implications for rehabilitationPatients with depressive symptoms three months post-stroke have a high risk of developing persistent or recurrent depressive symptoms during the first 12 months post-stroke.Unmet needs are associated with both non-consistent and persistent depressive symptoms post-stroke.These results suggest that health professionals should routinely screen for depressive symptoms and health care needs around three months post-stroke.In patients with depressive symptoms at three months post-stroke early treatment of depressive symptoms and addressing unmet needs should be considered and depressive symptoms should be routinely monitored during the first 12 months post-stroke.

Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients' and Parents' Perspective.

Improving participation is an important aim in outpatient rehabilitation treatment. Knowledge regarding participation restrictions in children and young adults with acquired brain injury (ABI) is scarce and little is known regarding the differences in perspectives between patients and parents in the outpatient rehabilitation setting. The aims are to describe participation restrictions among children/young adults (5-24 years) with ABI and investigating differences between patients' and parents' perspectives. At admission in 10 rehabilitation centers, patients and parents were asked to complete the Child and Adolescent Scale of Participation (CASP; score 0-100; lower score = more restrictions) and injury/patient/family-related questions. CASP scores were categorized (full/somewhat-limited/limited/very-limited participation). Patient/parent-reported outcomes were compared using the Wilcoxon signed-rank test. 223 patients and 245 parents participated (209 paired-samples). Median patients' age was 14 years (IQR; 11-16), 135 were female (52%), 195 had traumatic brain injury (75%). The median CASP score reported by patients was 82.5 (IQR: 67.5-90) and by parents 91.3 (IQR: 80.0-97.5) (difference = p < 0.05). The score of 58 patients (26%) and 25 parents (10%) was classified as 'very-limited'. Twenty-six percent of children and young adults referred for rehabilitation after ABI had "very-limited" participation. Overall, parents rated their child's participation better than patients themselves. Quantifying participation restrictions after ABI and considering both perspectives is important for outpatient rehabilitation treatment.

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.

Effect of a comprehensive eRehabilitation intervention alongside conventional stroke rehabilitation on disability and health-related quality of life: A pre-post comparison.

OBJECTIVE: To compare the effect on disability and quality of life, of conventional rehabilitation (control group) with individualized, tailored eRehabilitation intervention alongside conventional rehabilitation (Fast@home; intervention group), for people with stroke. METHODS: Pre-post design. The intervention comprised cognitive (Braingymmer®) and physical (Telerevalidatie®/Physitrack®) exercises, activity-tracking (Activ8®) and psycho-education. Assessments were made at admission (T0) and after 3 (T3) and 6 months (T6). The primary outcome concerned disability (Stroke Impact Scale; SIS). Secondary outcomes were: health-related quality of life, fatigue, self-management, participation and physical activity. Changes in scores between T0-T3, T3-T6, and T0-T6 were compared by analysis of variance and linear mixed models. RESULTS: The study included 153 and 165 people with stroke in the control and intervention groups, respectively. In the intervention group, 82 (50%) people received the intervention, of whom 54 (66%) used it. Between T3 and T6, the change in scores for the SIS subscales Communication (control group/intervention group -1.7/-0.3) and Physical strength (-5.7/3.3) were significantly greater in the total intervention group (all mean differences< minimally clinically important differences). No significant differences were found for other SIS subscales or secondary outcomes, or between T0-T3 and T0-T6. CONCLUSION: eRehabilitation alongside conventional stroke rehabilitation had a small positive effect on communication and physical strength on the longer term, compared to conventional rehabilitation only.

Validity and responsiveness of the World Health Organization Disability Assessment Schedule II to assess disability in rheumatoid arthritis patients.

OBJECTIVE: To investigate the validity and responsiveness of the World Health Organization Disability Schedule II (WHODAS II) in patients with established RA. METHODS: In 85 RA patients admitted for rehabilitation, the WHODAS II (0-100) was applied at admission and 6 weeks after discharge. Additional assessments included measures of physical and psychological functioning, disease activity and quality of life. The internal consistency of the WHODAS II was determined with Cronbach's-alpha. Associations between the WHODAS II and other outcome measures were determined by Pearson's rank correlation coefficients. Responsiveness measures included the standardized response mean (SRM), effect size (ES) and responsiveness ratio (RR). RESULTS: Cronbach's-alpha of the WHODAS II total score was 0.91. The baseline WHODAS II total score correlated significantly with all other outcome measures, except for the 50-feet walk test, the timed-stands test and the Escola Paulista de Medicina Range of Motion scale. The mean WHODAS II total score improved from 40.5 (s.d. 14.9) at baseline to 4.6 at 6 weeks after discharge (95% CI -8.1, -1.2). The WHODAS II responsiveness scores were -0.35 (SRM), -0.34 (ES) and -0.58 (RR) at 6 weeks after discharge. CONCLUSION; The WHODAS II appeared to be internally consistent, valid and responsive to assess disability in patients with established RA admitted for multidisciplinary team care in terms of International Classification of Functioning, Disability and Health. The WHODAS II showed significant floor effects regarding the subscales--'understanding communicating' and 'getting along with people'. In a multidisciplinary setting, the additional use of measures to evaluate personal and environmental factors seems warranted.