Work-related support for employed and self-employed people with rheumatoid arthritis or axial spondyloarthritis: a cross-sectional online survey of patients.

BACKGROUND: Little is known about the provision of work-related support for (self-)employed people with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA) by healthcare providers (HCPs) or employers. OBJECTIVE: This study aims to explore the experiences of (self-)employed people with RA or axSpA regarding work-related support from HCPs and employers in the Netherlands. METHODS: This cross-sectional study concerned an online survey for (self-)employed people, aged ≥ 16 years and diagnosed with RA or axSpA. The survey focused on experiences with HCPs and employers' work-related support and included questions on sociodemographic factors, health and work characteristics and work-related problems. RESULTS: The survey was completed by 884 participants, 56% with RA and 44% with axSpA, of whom 65% were employed, 8% self-employed and 27% not employed. In total, 95% (589/617) of (self-)employed participants reported work-related problems. Sixty-five percent of employed and 56% of self-employed participants had discussed these work-related problems with rheumatologists and/or other HCPs. Whereas 69% of employees with their employer. Both employed and self-employed participants reported that work-related advices or actions were more often provided by other HCPs (53%) than rheumatologists (29%). Fifty-six percent of employees reported this work-related support by the employer. CONCLUSION: This survey among (self-)employed people with RA or axSpA found that the majority reported work-related problems, but only half of them received any work-related support for these problems. Discussion of work-related problems with HCPs was more often reported by employed than self-employed participants. More attention from especially rheumatologists and other HCPs is important to identify and address work-related problems promptly.

Development of a Multimodal, Physiotherapist-Led, Vocational Intervention for People with Inflammatory Arthritis and Reduced Work Ability: A Mixed-Methods Design Study.

PURPOSE: Work ability of people with rheumatoid arthritis (RA) and axial spondyloarthritis (axSpA) is reduced, but underexamined as a clinical treatment target. The evidence on vocational interventions indicates that delivery by a single healthcare professional (HCP) may be beneficial. Physiotherapist (PT)-led interventions have potential because PTs are most commonly consulted by RA/axSpA patients in the Netherlands. The aim was to develop a PT-led, vocational intervention for people with RA/axSpA and reduced work ability. METHODS: Mixed-methods design based on the Medical Research Council (MRC) framework for developing and evaluating complex interventions, combining a rapid literature review and six group meetings with: patient representatives (n = 6 and 10), PTs (n = 12), (occupational) HCPs (n = 9), researchers (n = 6) and a feasibility test in patients (n = 4) and PTs (n = 4). RESULTS: An intervention was developed and evaluated. Patient representatives emphasized the importance of PTs' expertise in rheumatic diseases and work ability. The potential for PTs to support patients was confirmed by PTs and HCPs. The feasibility test confirmed adequate feasibility and underlined necessity of training PTs in delivery. The final intervention comprised work-focussed modalities integrated into conventional PT treatment (10-21 sessions over 12 months), including a personalized work-roadmap to guide patients to other professionals, exercise therapy, patient education and optional modalities. CONCLUSION: A mixed-methods design with stakeholder involvement produced a PT-led, vocational intervention for people with RA/axSpA and reduced work ability, tested for feasibility and ready for effectiveness evaluation.

Ethnic disparities in long-term outcomes and health care usage after stroke in the Netherlands.

BACKGROUND: Poststroke health-related quality of life (HRQOL) is an important outcome that may be influenced by ethnicity. OBJECTIVE: To compare long-term HRQOL, mental health and healthcare utilization between stroke survivors with a European (EUB) and non-European background (NEUB) in a hospital population. METHODS: In this retrospective cohort study patients completed questionnaires 2-5 years after stroke. Assessments included the EuroQol-5D-3L (EQ-5D), Short Form (SF-36, with physical and mental component summary scales, PCS and MCS), Hospital Anxiety and Depression Scale (HADS; scores ≥8 indicate clinically relevant complaints) and a questionnaire on the usage of services from physicians and/or healthcare professionals (HCP) in the past 6 months. Linear and logistic regression analysis was used, adjusted for age, sex, level of education and functional outcome. RESULTS: We included 207 patients (169 EUB, 38 NEUB); mean age 63.8 years (SD 14.4); 60.4 % male; mean follow up 36.3 months (SD 9.9). The EQ-5D and the PCS were higher in EUB versus NEUB patients (42.9 vs 35.4, p < 0.01; 0.76 vs 0.60, p < 0.01). The MCS showed a comparable, non-significant trend. The percentage of patients with HADS depression ≥8 was higher in NEUB patients versus EUB patients (54.3 % vs 29.8 %; p > 0.01). Significantly more NEUB patients had visited two or more physicians in the past six months compared to EUB patients (52.0 % vs 26.0 %; p = 0.01) whereas the use of services from HCP was similar. CONCLUSIONS: NEUB stroke patients had worse outcomes regarding HRQOL and depressive symptoms compared to EUB patients. NEUB patients visited more physicians.

Effectiveness and cost-effectiveness of a multimodal, physiotherapist-led, vocational intervention in people with inflammatory arthritis: study protocol of the Physiotherapy WORKs trial.

BACKGROUND: Although reduced work ability is a substantial problem among people with inflammatory arthritis (IA), work ability is an underexposed area in clinical practice. Evidence on vocational interventions in IA is limited, but favourable results of delivery by a physiotherapist (PT) warrant the need for further research. Therefore, we aim to evaluate the (cost-)effectiveness of a multimodal, PT-led, vocational intervention in (self-)employed people with IA compared to usual care. METHODS: This randomized controlled trial will include 140 people with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA) who are (self-)employed and have reduced work ability (Work Ability Index - Single Item Scale (WAS) ≤ 7/10) and/or RA/axSpA related sick leave (≤ 6 months). Participants will be randomized 1:1 to the intervention or control condition (usual care). The intervention, delivered by primary care PTs, will be personalized to each patient, consisting of 10 to 21 sessions over 12 months. The intervention will be multimodal, comprising of 1) exercise therapy and a physical activity plan, 2) education/self-management support, 3) work-roadmap to guide participants in finding relevant other care, with optionally 4) online self-management course and 5) workplace examination. Assessments will be performed at baseline and after 3, 6, and 12 months. The primary outcome measure of effectiveness is work ability, as measured with the WAS at 12 months. For the cost-effectiveness analysis, the EuroQol (EQ-5D-5L), self-reported healthcare use, sick leave and productivity while at work will be used to estimate the trial based cost-utility from a societal perspective. A process evaluation, including assessments of adherence and treatment fidelity, will be undertaken using the registrations of the PTs and semi-structured interviews at 12 months follow-up in a random sample of the intervention group. DISCUSSION: The results of this study will provide insights in the (cost-)effectiveness of a multimodal, PT-led, vocational intervention in people with IA and a reduced work ability. TRIAL REGISTRATION: This study is registered in the International Clinical Trial Registry Platform (ICTRP) under number NL9343.

A longitudinal follow-up study of parent-reported family impact and quality of life in young patients with traumatic and non-traumatic brain injury.

PURPOSE: Brain injuries (traumatic-/nontraumatic, TBI/nTBI) in young patients may lead to problems e.g., decreased health-related quality of life (HRQoL), and causes family impact. Knowledge regarding the family impact and the relationship with patients' HRQoL over time is scarce. This follow-up study describes family impact/HRQoL and their mutual relationship in young patients (5-24 years) after TBI/nTBI. MATERIALS AND METHODS: Parents of patients that were referred to outpatient rehabilitation completed the PedsQL™Family-Impact-Module questionnaire to assess the family impact and the parent-reported PedsQL™Generic-core-set-4.0 to assess patients' HRQoL (lower scores: more family impact/worse HRQoL). Questionnaires were completed at the time of referral to rehabilitation (baseline) and one/two years later (T1/T2). Linear-mixed models were used to examine family impact/HRQoL change scores, and repeated-measure correlations (r) to determine longitudinal relationships. RESULTS: Two-hundred-forty-six parents participated at baseline, 72 (at T2), median patient's age at baseline was 14 years (IQR:11-16), and 181 (74%) had TBI. Mean (SD) PedsQL™Family-Impact-Module score at baseline was 71.7 (SD:16.4) and PedsQL™Generic-core-set-4.0: 61.4 (SD:17.0). Over time, PedsQL™Family-Impact-Module scores remained stable, while PedsQL™Generic-core-set-4.0 scores improved significantly(p < 0.05). A moderately strong longitudinal correlation was found between family impact&HRQoL (r = 0.51). CONCLUSIONS: Family impact does not tend to decrease over time but remained a considerable problem, although patients' HRQoL improved. Next to focusing on patients' HRQoL, it remains important to consider family impact and offer family support throughout rehabilitation.IMPLICATIONS FOR REHABILITATIONThis longitudinal study found that in young patients with traumatic brain injury (TBI) or non-traumatic brain injury (nTBI) referred for rehabilitation there is a considerable impact on the family until two years after referral, whereas the patients' health-related quality of life (HRQoL) improved significantly.Improvements in patients' quality of life status may not automatically lead to a decrease of family impact.Rehabilitation clinicians should monitor the impact on the family over time and provide long-term family support with special attention to parental worrying when needed.Clinicians should be aware that, despite significant differences between the clinical characteristics of patients with TBI and nTBI, the courses of family impact are very similar.

The use of PROMIS measures in clinical studies in patients with inflammatory arthritis: a systematic review.

PURPOSE: Although the use of Patient-Reported Outcomes Measurement Information System (PROMIS) measures is widely advocated, little is known on their use in patients with inflammatory arthritis. We systematically describe the use and outcomes of PROMIS measures in clinical studies involving people with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA). METHODS: A systematic review was conducted according to the PRISMA guidelines. Through a systematic search of nine electronic databases, clinical studies including patients with RA or axSpA and reporting the use of PROMIS measure were selected. Study characteristics, details of PROMIS measures and their outcomes, if available, were extracted. RESULTS: In total, 29 studies described in 40 articles met the inclusion criteria, of which 25 studies included RA patients, three studies included axSpA patients and one study included both RA and axSpA patients. The use of two general PROMIS measures (PROMIS Global Health, PROMIS-29) and 13 different domain-specific PROMIS measures was reported, of which the PROMIS Pain Interference (n = 17), Physical Function (n = 14), Fatigue (n = 13), and Depression (n = 12) measures were most frequently used. Twenty-one studies reported their results in terms of T-scores. Most T-scores were worse than the general population mean, indicating impairments of health status. Eight studies did not report actual data but rather measurement properties of the PROMIS measures. CONCLUSION: There was considerable variety regarding the different PROMIS measures used, with the PROMIS Pain interference, Physical function, Fatigue, and Depression measures being the most frequently used. In order to facilitate the comparisons across studies, more standardization of the selection of PROMIS measures is needed.

Implementing enhancements in supervised group exercise for people with axial spondyloarthritis: a hybrid effectiveness-implementation study.

OBJECTIVES: The content of supervised group exercise (SGE) for axial spondyloarthritis (axSpA) has hardly changed in recent decades, despite new evidence-based insights to improve SGE quality. This pilot implementation study evaluated the effects and feasibility of enhancements in axSpA-specific SGE in four regions in the Netherlands. METHOD: The implemented enhancements included: more high-intensity aerobic exercise; exercise personalization with periodic assessments; and patient education on home exercise. The implementation strategy included a one-day supervisor training course and telephone support. To evaluate effects, aerobic capacity [Six-Minute Walk Test (6MWT)], physical functioning [Ankylosing Spondylitis Performance-based Improvement (ASPI); improved/not improved], health status [Assessment of SpondyloArthritis international Society Health Index (ASAS HI) questionnaire], and home exercise engagement [Short QUestionnaire to ASsess Health-enhancing physical activity (SQUASH)] were assessed at baseline and after one year in 60 participants. Changes were analysed with the Wilcoxon signed-rank test. To evaluate feasibility, a survey of participants and semi-structured interviews with four SGE supervisors assessed uptake and satisfaction with the enhancements. RESULTS: Aerobic capacity increased significantly and 35% of participants improved functioning, whereas health status and home exercise engagement did not change. The participants' survey and supervisors' interviews showed that high-intensity aerobic exercise was implemented successfully, exercise personalization and periodic assessments were implemented partially, and patient education was not implemented at all. Most participants were satisfied with the changes. CONCLUSIONS: After this pilot implementation, SGE enhancements were only partially implemented. Nevertheless, aerobic capacity improved significantly and satisfaction with accomplished changes was high. Nationwide implementation would require adaptations to improve feasibility.

Reporting quality of interventions using a wearable activity tracker to improve physical activity in patients with inflammatory arthritis or osteoarthritis: a systematic review.

To assess the reporting quality of interventions aiming at promoting physical activity (PA) using a wearable activity tracker (WAT) in patients with inflammatory arthritis (IA) or hip/knee osteoarthritis (OA). A systematic search was performed in eight databases (including PubMed, Embase and Cochrane Library) for studies published between 2000 and 2022. Two reviewers independently selected studies and extracted data on study characteristics and the reporting of the PA intervention using a WAT using the Consensus on Exercise Reporting Template (CERT) (12 items) and Consolidated Standards of Reporting Trials (CONSORT) E-Health checklist (16 items). The reporting quality of each study was expressed as a percentage of reported items of the total CERT and CONSORT E-Health (50% or less = poor; 51-79% = moderate; and 80-100% = good reporting quality). Sixteen studies were included; three involved patients with IA and 13 with OA. Reporting quality was poor in 6/16 studies and moderate in 10/16 studies, according to the CERT and poor in 8/16 and moderate in 8/16 studies following the CONSORT E-Health checklist. Poorly reported checklist items included: the description of decision rule(s) for determining progression and the starting level, the number of adverse events and how adherence or fidelity was assessed. In clinical trials on PA interventions using a WAT in patients with IA or OA, the reporting quality of delivery process is moderate to poor. The poor reporting quality of the progression and tailoring of the PA programs makes replication difficult. Improvements in reporting quality are necessary.

Recovery and the use of postoperative physical therapy after total hip or knee replacement.

BACKGROUND: Total hip or knee arthroplasties (THA/TKA) show favorable long-term effects, yet the recovery process may take weeks to months. Physical therapy (PT) following discharge from hospital is an effective intervention to enhance this recovery process. To investigate the relation between recovery and postoperative PT usage, including the presence of comorbidities, 6 months after THA/TKA. METHODS: Multicenter, observational study in primary THA/TKA patients who completed preoperative and 6 months postoperative assessments. The assessments included questions on PT use (yes/no and duration; long term use defined as ≥ 12 weeks), comorbidities (musculoskeletal, non-musculoskeletal, sensory comorbidities and frequency of comorbidities). Recovery was assessed with the HOOS/KOOS on all 5 subdomains. Logistic regression with long term PT as outcome was performed adjusted for confounding including an interaction term (comorbidity*HOOS/KOOS-subdomain). RESULTS: In total, 1289 THA and 1333 TKA patients were included, of whom 95% received postoperative PT, 56% and 67% received postoperative PT ≥ 12 weeks respectively. In both THA and TKA group, less improvement on all HOOS/KOOS domain scores was associated with ≥ 12 weeks of postoperative PT (range Odds Ratios 0.97-0.99). In the THA group the impact of recovery was smaller in patient with comorbidities as non- musculoskeletal comorbidities modified all associations between recovery and postoperative PT duration (Odds Ratios range 1.01-1.05). Musculoskeletal comorbidities modified the associations between Function-in-Daily-Living-and Sport-and-recreation recovery and postoperative PT. Sensory comorbidities only had an effect on Sport-and-recreation recovery and postoperative PT. Also the frequency of comorbidities modified the relation between Function-in-Daily-Living, pain and symptoms recovery and postoperative PT. In the TKA group comorbidity did not modify the associations. CONCLUSION: Worse recovery was associated with longer duration of postoperative PT suggesting that PT provision is in line with patients' needs. The impact of physical recovery on the use of long-term postoperative PT was smaller in THA patients with comorbidities. TRIAL REGISTRATION: Registered in the Dutch Trial Registry on March 13, 2012. TRIAL ID NTR3348; registration number: P12.047. https://www.trialregister.nl/trial/3197 .

Acute pain after total hip and knee arthroplasty does not affect chronic pain during the first postoperative year: observational cohort study of 389 patients.

Chronic pain is frequently reported after total hip and knee arthroplasties (THA/TKA) in osteoarthritis (OA) patients. We investigated if severity of acute postoperative pain following THA/TKA in OA patients was associated with pain during the first postoperative year. From an observational study, OA patients scheduled for primary THA/TKA (June 2012-December 2017) were included from two hospitals in the Netherlands. Acute postoperative pain scores were collected within 72 h postoperatively and categorized as no/mild (NRS ≤ 4) or moderate/severe (NRS > 4). Pain was assessed preoperatively, 3, 6 and 12 months postoperatively using the HOOS/KOOS subscale pain. With Multilevel Mixed-effects-analyses, we estimated associations between acute and chronic pain until one year postoperative, adjusted for confounders and including an interaction term (Time*Acute pain). 193 THA and 196 TKA patients were included, 29% of THA and 51% of TKA patients reported moderate/severe pain acutely after surgery. In the THA group, the difference in pain at 3 months between the no/mild and moderate/severe groups, was approximately six points, in favor of the no/mild group (95% CI [-12.4 to 0.9]) this difference became smaller over time. In the TKA group we found similar differences, with approximately four points (95% CI [-9.6 to 1.3]) difference between the no/mild and moderate/severe group at 6 months, this difference attenuated at 12 months. No association between severity of acute postoperative pain and pain during the first postoperative year was found. These findings suggest that measures to limit acute postoperative pain will likely not impact development of chronic pain.

How does hip osteoarthritis differ from knee osteoarthritis?

Hip and knee osteoarthritis (OA) are leading causes of global disability. Most research to date has focused on the knee, with results often extrapolated to the hip, and this extends to treatment recommendations in clinical guidelines. Extrapolating results from research on knee OA may limit our understanding of disease characteristics specific to hip OA, thereby constraining development and implementation of effective treatments. This review highlights differences between hip and knee OA with respect to prevalence, prognosis, epigenetics, pathophysiology, anatomical and biomechanical factors, clinical presentation, pain and non-surgical treatment recommendations and management.

Improvement of physical activity levels in children and adolescents after surgery for congenital heart disease: preferences and use of physical therapy.

PURPOSE: After surgery for congenital heart disease in children and adolescents, an active lifestyle is important to achieve and maintain good physical fitness. This study aimed to describe physical activity, as well as the use of patients' and parents' preferences for rehabilitative care after surgery for congenital heart disease. METHODS: This cross-sectional study included patients aged 4-16 years old, who had undergone surgery for congenital heart disease 2 years prior to the study onset. Patients and/or parents were invited to complete questionnaires on physical activity, and on their preferences for, and -use of, rehabilitative care after surgery. RESULTS: Forty-five of the 92 eligible patients and/or parents completed the questionnaires. The median age of the children was 12.2 years (IQR 7.8-16.1). Two children (4%) met the recommendations for taking part in moderate physical activity and 13 (29%) having done so for vigorous physical activity. Postoperatively 15 children (33%) had had physical therapy in primary care. More than 50% of the patients/parents would have preferred to have had more information on physical activity and to have taken part in an individual exercise program delivered during their primary care. CONCLUSION: The majority of eligible patients do not meet public health recommendations for engaging in physical activity and do not use physical therapy after surgery for congenital heart disease. The majority of patients and parents preferred more information as well as individual physical therapy treatments.Implications for rehabilitationsTwo years after surgery for congenital heart disease children and adolescents are less active compared to typically developing peers.Patients with a congenital heart disease and their parents need more information and support regarding stimulation of physical activity and physical fitness after heart surgery.In the postoperative process, a well-structured and supportive (individual) rehabilitation program should be introduced to improve physical activity and physical fitness.

Referral to and enrolment in cardiac rehabilitation after open-heart surgery in the Netherlands.

AIM: Although referral to phase 2 cardiac rehabilitation (CR) following open-heart surgery is recommended in professional guidelines, according to the literature, participation rates are suboptimal. This study investigates the referral and enrolment rates, as well as determinants for these rates, for phase 2 CR following open-heart surgery via sternotomy. METHODS: A cross-sectional survey study was conducted among patients who underwent open-heart surgery via sternotomy in a university hospital. Data on referral and enrolment rates and possible factors associated with these rates (age, sex, type of surgery, educational level, living status, employment, income, ethnicity) were collected by a questionnaire or from the patient's medical file. Univariate logistic regression analysis (odds ratio) was used to study associations of patient characteristics with referral and enrolment rates. RESULTS: Of the 717 eligible patients, 364 (51%) completed the questionnaire. Their median age was 68 years (interquartile range 61-74) and 82 (23%) were female. Rates for referral to and enrolment in phase 2 CR were 307 (84%) and 315 (87%), respectively. Female sex and older age were independently associated with both non-referral and non-enrolment. Additional factors for non-enrolment were surgery type (coronary artery bypass grafting with valve surgery and miscellaneous types of relatively rare surgery), living alone and below-average income. CONCLUSION: Phase 2 CR referral and enrolment rates for patients following open-heart surgery were well over 80%, suggesting adequate adherence to professional guidelines. During consultation, physicians and specialised nurses should pay more attention to certain patient groups (at risk of non-enrolment females and elderly). In addition, in-depth qualitative research to identify reasons for non-referral and/or non-enrolment is needed.

Parent-reported family impact in children and young adults with acquired brain injury in the outpatient rehabilitation setting.

Purpose: To increase knowledge/awareness on family impact (FI) after acquired brain injury (ABI) in rehabilitation settings, it is essential to investigate the associations between patient-functioning and impact on families. This has been explored in hospital-based cohorts, but not in rehabilitation settings.Methods: A cross-sectional, multi-center study among parents of children/young adults (aged 5-24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL™Family-Impact-Module and PedsQL™generic-core-4.0 to assess FI and health-related quality of life (HRQoL). Univariate- and multivariable-regression analyses were performed to investigate associations between HRQoL/patient/injury/family-related factors and FI.Results: 246 families participated; patients' median age was 14 year (IQR 11-16), 65 had non-traumatic-brain-injury (nTBI) (26%), 127 were female. FI was found to be considerable (median FIM-score 71.9, IQR:60-85). Especially referral to rehabilitation >6 months after onset, diminished patients' mental/emotional health and HRQoL (child/family factors), and premorbid problems were associated with higher FI.Conclusions: In this rehabilitation cohort, pediatric ABI caused considerably higher FI than in hospital-based studies with referral to rehabilitation >6 months, diminished child/family factors and presence of premorbid problems increasing FI. Assessing and monitoring FI and its associated factors enables professionals to individualize treatment, psychoeducation, support and follow-up.

Are pain, functional limitations and quality of life associated with objectively measured physical activity in patients with end-stage osteoarthritis of the hip or knee?

OBJECTIVES: Physical activity is promoted in patients with hip or knee osteoarthritis (OA), yet little is known about its relationship with symptoms, functional limitations and Quality of Life (QoL). We investigated if OA-associated pain, functional limitations and QoL are associated with objectively measured physical activity in patients with end-stage hip/knee OA. METHODS: Cross-sectional study including patients scheduled for primary total hip/knee arthroplasty. Patients wore an accelerometer (Activ8) with physical activity assessed over waking hours, and expressed as number of activity daily counts (ADC) per hour, %time spent on physical activity i.e. walking, cycling or running (%PA), and %time spent sedentary (%SB). Pain, functional limitations and joint-specific and general QoL were assessed with the Hip disability/Knee Injury and Osteoarthritis Outcome Score (HOOS/KOOS) and the Short Form (SF)-12. Multivariate linear regression models with the three to Z-scores transformed parameters of physical activity as dependent variables and adjusted for confounding, were conducted. RESULTS: 49 hip and 48 knee OA patients were included. In hip and knee OA patients the mean number of ADC, %PA and %SB were 18.79 ± 7.25 and 21.19 ± 6.16, 14 ± 6.4 and 15 ± 5.0, and 66 ± 10.5 and 68 ± 8.7, respectively. In hip OA, better joint-specific and general QoL were associated with more ADC, (ß 0.028; 95%CI:0.007-0.048, ß0.041; 95%CI:0.010-0.071). Also, better general QoL was associated with the %PA (ß 0.040, 95%CI:0.007-0.073). No other associations were found. CONCLUSION: Whereas QoL was associated with physical activity in hip OA, pain and functional limitations were not related to objectively measured physical activity in patients with end-stage hip or knee OA.

How to improve eRehabilitation programs in stroke care? A focus group study to identify requirements of end-users.

BACKGROUND: A user-centered design approach for eHealth interventions improves their effectiveness in stroke rehabilitation. Nevertheless, insight into requirements of end-users (patients/informal caregivers and/or health professionals) for eRehabilitation is lacking. The aim of this study was to identify end-user requirements for a comprehensive eHealth program in stroke rehabilitation. METHODS: Eight focus groups were conducted to identify user requirements; six with patients/informal caregivers and two with health professionals involved in stroke rehabilitation (rehabilitation physicians, physiotherapists, occupational therapists, psychologists, team coordinators, speech therapist). The focus groups were audiotaped and transcribed in full. Direct content analysis was used to identify the end-user requirements for stroke eHealth interventions concerning three categories: accessibility, usability and content. RESULTS: In total, 45 requirements for the accessibility, usability and content of a stroke eRehabilitation program emerged from the focus groups. Most requirements concerned content (27 requirements), followed by usability (12 requirements) and accessibility (6 requirements). Patients/informal caregivers and health professionals each identified 37 requirements, respectively, with 29 of them overlapping. CONCLUSIONS: Requirements between stroke patients/informal caregivers and health professionals differed on several aspects. Therefore, involving the perspectives of all end users in the design process of stroke eRehabilitation programs is needed to achieve a user-centered design. TRIAL REGISTRATION: The study was approved by the Medical Ethical Review Board of the Leiden University Medical Center [P15.281].

Illness perceptions of stroke survivors: Predictors and changes over time - A 1 year follow-up study.

OBJECTIVE: To 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. METHODS: This 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. CONCLUSION: Stroke 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.

Value-Based Stroke Rehabilitation: Feasibility and Results of Patient-Reported Outcome Measures in the First Year After Stroke.

PURPOSE: Structured application of patient-reported outcome measures (PROMs) is a key element in Value Based Healthcare. This study aimed to evaluate the feasibility of a broad set of PROMs reflecting similar patient reported health domains as proposed within the International Standard Set of Patient-Centered Outcome Measures After Stroke within the first year after stroke. METHODS: The study included consecutive stroke patients admitted to inpatient or outpatient specialized rehabilitation. PROMs were administered upon admission, discharge (inpatients only), and at 3, 6, and 12 months. PROMs included: EuroQol 5 Dimensions (EQ-5D), Stroke Impact Scale (SIS), Stroke and Aphasia Quality of Life Scale (SAQOL-39NL), Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P), Hospital Anxiety and Depression Scale (HADS), and Fatigue Severity Scale (FSS). Feasibility was defined as participation, retention, and response rates. Paired t tests were conducted to analyze their changes over time. RESULTS: Of 485 inpatients and 189 outpatients who were invited, 291 (60.0%) and 82 (43.3%) participated, of whom 45 (15.5%) and 7 (8.5%) dropped out before 12 months, respectively. Two hundred seven (71.1%) and 71 (86.6%) of the inpatients and outpatients returned the questionnaires on all or all but one time points, respectively. Between admission and 12 months statistically significant improvements of PROMs addressing general health and quality of life (EQ-5D), psychiatric functioning (HADS), motor functioning (SIS mobility), and social functioning (USER-P, SIS communication) were seen. The SIS memory scale, the SAQOL-39NL and the FSS did not show any changes. CONCLUSIONS: Participation, retention, and response rates for a comprehensive set of PROMS for stroke in patients in rehabilitation were moderate to good, with clinical improvements seen until 1 year post stroke. The SAQOL-39NL and FSS did not demonstrate changes over time and cannot be recommended for repetitive measurements in this setting. By simplifying the set of questionnaires, participation and response rates may be further enhanced.

Why the uptake of eRehabilitation programs in stroke care is so difficult-a focus group study in the Netherlands.

BACKGROUND: The uptake of eRehabilitation programs in stroke care is insufficient, despite the growing availability. The aim of this study was to explore which factors influence the uptake of eRehabilitation in stroke rehabilitation, among stroke patients, informal caregivers, and healthcare professionals. METHODS: A qualitative focus group study with eight focus groups (6-8 participants per group) was conducted: six with stroke patients/informal caregivers and two with healthcare professionals involved in stroke rehabilitation (rehabilitation physicians, physical therapists, occupational therapists, psychologists, managers). Focus group interviews were audiotaped, transcribed in full, and analyzed by direct content analysis using the implementation model of Grol. RESULTS: Thirty-two patients, 15 informal caregivers, and 13 healthcare professionals were included. A total of 14 influencing factors were found, grouped to 5 of the 6 levels of the implementation model of Grol (Innovation, Organizational context, Individual patient, Individual professional, and Economic and political context). Most quotes of patients, informal caregivers, and healthcare professionals were classified to factors at the level of the Innovation (e.g., content, attractiveness, and feasibility of eRehabilitation programs). In addition, for patients, relatively many quotes were classified to factors at the level of the individual patient (e.g., patients characteristics as fatigue and the inability to understand ICT-devices), and for healthcare professionals at the level of the organizational context (e.g., having sufficient time and the fit with existing processes of care). CONCLUSION: Although there was a considerable overlap in reported factors between patients/informal caregivers and healthcare professionals when it concerns eRehabilitation as innovation, its seems that patients/informal caregivers give more emphasis to factors related to the individual patient, whereas healthcare professionals emphasize the importance of factors related to the organizational context. This difference should be considered when developing an implementation strategy for patients and healthcare professionals separately.

Attention needed for cognitive problems in patients after out-of-hospital cardiac arrest: an inventory about daily rehabilitation care.

AIM: Recent literature and Dutch guidelines for patients with out-of-hospital cardiac arrest (OHCA) recommend screening for cognitive impairments and referral to cognitive rehabilitation when needed. The aim of this study is to assess the uptake of these recommendations for OHCA patients. METHOD: An internet-based questionnaire was sent to 74 cardiologists and 143 rehabilitation specialists involved in rehabilitation of OHCA patients in the Netherlands. The questionnaire covered: background characteristics, availability and content of cognitive screening and rehabilitation, organisation of care, experienced need for an integrated care pathway including physical and cognitive rehabilitation, barriers and facilitators for an integrated care pathway. RESULTS: Forty-five questionnaires were returned (16 cardiologists and 29 rehabilitation doctors). Thirty-nine percent (n = 17) prescribed cognitive screening. Eighty-nine percent underscores an added value of an integrated care pathway. Barriers for an integrated care pathway included lack of knowledge, logistic obstacles, and poor cooperation between medical specialties. CONCLUSIONS: In the Netherlands, only a minority of cardiologists and rehabilitation specialists routinely prescribe some form of cognitive screening in OHCA patients, although the majority underscores the value of cognitive screening in OHCA patients in an integrated care pathway. The uptake of such a care pathway seems hindered by lack of knowledge and organisational barriers.