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.

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.

The patient perspective on the use of information and communication technologies and e-health in rehabilitation.

INTRODUCTION: Success of e-health relies on the extent to which the related technology, such as the electronic device, is accepted by its users. However, there has been limited research on the patients' perspective on use of e-health-related technology in rehabilitation care. OBJECTIVE: To explore the usage of common electronic devices among rehabilitation patients with access to email and investigate their preferences regarding their usage in rehabilitation. METHODS: Adult patients who were admitted for inpatient and/or outpatient rehabilitation and were registered with an email address were invited to complete an electronic questionnaire regarding current and preferred use of information and communication technologies in rehabilitation care. RESULTS: 190 out of 714 invited patients completed the questionnaire, 94 (49%) female, mean age 49 years (SD 16). 149 patients (78%) used one or more devices every day, with the most frequently used devices were: PC/laptop (93%), smartphone (57%) and tablet (47%). Patients mostly preferred to use technology for contact with health professionals (mean 3.15, SD 0.79), followed by access to their personal record (mean 3.09, SD 0.78) and scheduling appointments with health professionals (mean 3.07, SD 0.85). CONCLUSION: Most patients in rehabilitation used one or more devices almost every day and wish to use these devices in rehabilitation. Implications for Rehabilitation In a sample of 190 patients in rehabilitation with access to email, almost all patients used one or more electronic devices almost every day of the week, with the most frequently used devices were: a PC/laptop, smartphone and tablet. Most of the patients wish to incorporate electronic devices in their rehabilitation process and prefer to use those devices to have insight in their health record, communication with peers and scheduling appointments with health professionals. To better assist patients with e-health in rehabilitation care in the future, preferences could be implemented in rehabilitation care by using the most commonly used devices.

Healthcare costs and loss of productivity in patients with trapeziometacarpal osteoarthritis.

The objective of this study was to analyse healthcare and productivity costs in patients with trapeziometacarpal osteoarthritis. We included 161 patients who received surgery or steroid injection and calculated their healthcare costs in Euro (€) over 1 year. Patients filled out the Work Productivity and Activity Impairment Questionnaire to assess loss of productivity at baseline, and after 3, and 12 months. In the surgical group, loss of productivity among employed patients first increased and then decreased (50%, 64%, and 25% at 0, 3, and 12 months). Productivity was more stable over time in the injection group (52%, 38%, and 48%). In the surgical group, estimated total annual healthcare and productivity costs were €5770 and €5548, respectively. In the injection group, healthcare and productivity costs were €348 and €3503. These findings highlight the need for assessing productivity costs to get a comprehensive view of the costs associated with a treatment.Level of Evidence III.

Frequency and impact of disease symptoms experienced by patients with systemic sclerosis from five European countries.

OBJECTIVES: Knowledge about the nature and impact of symptoms faced by patients with systemic sclerosis (SSc) is needed to identify targets for research and treatment. The aim of this study was to assess and compare the frequency and impact on everyday activities of SSc symptoms among patients from five European countries. METHODS: European patients with SSc were invited through announcements by patient associations to complete an online survey. The survey included items assessing the frequency of 40 SSc symptoms and the impact on daily activities, if present. Chi-square tests were utilised to assess the differences in frequency and impact of symptoms across countries. RESULTS: In total, 537 patients were included from France (n=111), the Netherlands (n=229), Spain (n=61), Switzerland (n=50), and the United Kingdom (n=86). Symptoms experienced by ≥ 70% of patients in all countries were fatigue, Raynaud's phenomenon, joint pain, and muscle pain. Twenty symptoms were experienced by ≥ 50% of patients in all countries. Thirty symptoms had an impact on daily activities in ≥ 50% of patients who reported that the symptom was present in all countries. There were significant differences among countries in the prevalence of 17 out of 40 symptoms. Furthermore, in 24 out of 40 symptoms significant differences in the proportion of patients reporting impact of a specific symptom on everyday activities were observed. CONCLUSIONS: European patients with SSc experience a broad range of symptoms that have an impact on everyday activities. International research initiatives should target common SSc symptoms cooperatively. Further research is needed to better understand the differences in SSc symptoms among countries.

Measuring educational needs among patients with systemic lupus erythematosus (SLE) using the Dutch version of the Educational Needs Assessment Tool (D-ENAT).

OBJECTIVE: The Educational Needs Assessment Tool (ENAT) was developed in the United Kingdom (UK) to systematically assess the educational needs of patients with rheumatic diseases. The aim of the present study was to describe the educational needs of Dutch patients with systemic lupus erythematosus (SLE) by means of a Dutch version of the ENAT (D-ENAT). METHODS: The D-ENAT was sent to a random sample of 244 SLE patients registered at the outpatient clinic of a university hospital. D-ENAT consists of 39 items in seven domains. The D-ENAT domain scores range from 0-16 to 0-28 (higher scoring equals higher educational needs) depending of the number of items in the domain. 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 the extent of information need (1-4: nothing-everything) were recorded. Univariate regression analysis was used to examine the D-ENAT's potential determinants. RESULTS: The response rate was 122 out of 244 (50%). The mean (% of maximum score) educational needs scores were 56% for 'D-ENAT total score', 62% for 'Self-help measures', 60% for 'Disease process', 58% for 'Feelings', 56% for 'Treatments', 50% for 'Movement', 49% for 'Support systems' and 46% for 'Managing pain'. Being female was significantly associated with higher scoring on the D-ENAT total score (ß 23.0; 95% CI 5.9, 40.3). CONCLUSION: SLE patients demonstrated substantial educational needs, especially in the domains: 'Self-help measures', 'Disease process' and 'Feelings'. The validity and practical applicability of the D-ENAT to make an inventory of SLE patients' educational needs requires further investigation.

Health care in systemic lupus erythematosus (SLE): the patient's perspective.

In order to provide more patient-centered care for patients suffering from systemic lupus erythematosus (SLE), we studied their current satisfaction and preferences regarding future health care delivery. We sent questionnaires to all SLE patients visiting the rheumatology outpatient clinic in Leiden, the Netherlands. The questionnaire comprised three topics: (a) health care needs using a modified version of SLE Needs Questionnaire (range 0-38), (b) satisfaction with care per provider (visual analogue scale, range 0 (not at all)-100 (very satisfied)), and (c) preferences for future healthcare (four items). One hundred and two patients (63 % response) reported an average of 16 (±6) health care needs, with all patients reporting a need in the physical domain. More needs were significantly associated with worse physical functioning and a higher educational level. The average satisfaction score was 73 (±19) with a lower overall satisfaction score being associated with younger age and an educational level higher or lower than average. Regarding preferences for future health care delivery, 75 % of patients showed interest in a yearly standardized medical assessment, 57 % in regular, specialized nurse contacts using internet, 50 % in a yearly inventory on the need for self-management support, and 36 % in an education course. The association of age, education level and physical functioning with health care needs, and/or satisfaction suggest that the delivery of care should be better tailored to the needs of subgroups of patients.

Implementation of a physical activity intervention for people with rheumatoid arthritis: a case study.

OBJECTIVES: To investigate the potential facilitators and barriers regarding the implementation on a larger scale of an internet-based physical activity intervention which had previously proved to be effective in a randomized, controlled trial concerning sedentary patients with rheumatoid arthritis (RA). METHODS: Assuming a central delivery of the intervention by two trained physical therapists in four regions in the Netherlands, the following activities were employed: the recruitment of potential participants (RA patients), the acquisition of cooperation from referring rheumatologists and the acquisition of reimbursement from regional health insurance companies. Evaluation was done by means of the Reach, Evaluation, Adoption, Implementation and Maintenance framework, of which the following three dimensions were considered relevant: Reach (the number of potential participants), Adoption (readiness for adopting the programme in real life among rheumatologists) and Implementation (the extent to which the intervention could be delivered as intended). Evaluation measures comprised a postal survey among 927 patients with RA in two regions, a telephone survey among rheumatology centres in four regions and consultations with five regional health insurance companies. RESULTS: Seventy-six out of 461 responding RA patients (20%) met the original study inclusion criteria (being sedentary and having access to the internet) and were interested in participation. However, the potential costs of the purchase of a bicycle ergometer and the interference with patients' current physical therapy were obstacles for eligible patients actually to participate. Rheumatologists in four out of five rheumatology centres were willing to participate. All five health insurance companies were willing to reimburse the guidance and feedback by the physical therapist, and the costs of the internet site (estimated costs 271 euro [203 pound] per patient per year), but not the bicycle ergometer (estimated costs 350 euro [262 pound]), provided that current physical therapy would be discontinued. CONCLUSIONS: Facilitators for the implementation of an internet-based physical activity intervention were: (i) a considerable proportion of RA patients were eligible and interested in the programme; (ii) the majority of rheumatologists were willing to refer patients; and (iii) health insurance companies were willing partially to reimburse the intervention. Barriers were the additional costs for patients and their unwillingness to discontinue current physical therapy. These findings underscore the need for additional research into barriers to participation in physical activity interventions among patients with RA, and in reimbursement strategies in particular.

Responsiveness of the shoulder function assessment scale in patients with rheumatoid arthritis.

OBJECTIVES: To investigate the responsiveness of the Shoulder Function Assessment scale (SFA) in patients with rheumatoid arthritis (RA). METHODS: In 35 patients with RA receiving a (peri-)articular injection because of local shoulder complaints the SFA, impact of shoulder function on activities of daily living, active shoulder range of motion (ROM), the 28 joint count Disease Activity Score (DAS28), and the Health Assessment Questionnaire (HAQ) were measured before and 4-6 weeks after treatment. Responsiveness was determined using the standardised response mean (SRM), effect size (ES), and responsiveness ratio (RR). RESULTS: Overall, significant improvement was seen according to the SFA (mean change 10.9 (95% confidence interval 6.5 to 15.3)), active shoulder ROM (except external rotation), and the impact of shoulder function on daily activities. In addition, the DAS28 and HAQ scores improved significantly. The responsiveness of the SFA was excellent, with the SRM, ES, and RR being -0.86, -1.16, and 1.28, respectively. CONCLUSIONS: In addition to its good validity and reliability, the SFA proved to have a high sensitivity to clinical changes in patients with RA who received local treatment for shoulder complaints.

Cost effectiveness and cost utility analysis of multidisciplinary care in patients with rheumatoid arthritis: a randomised comparison of clinical nurse specialist care, inpatient team care, and day patient team care.

OBJECTIVE: To assess the relative cost effectiveness of clinical nurse specialist care, inpatient team care, and day patient team care. METHODS: Incremental cost effectiveness analysis and cost utility analysis, alongside a prospective randomised controlled trial with two year follow up. Included were patients with rheumatoid arthritis (RA) with increasing difficulty in performing activities of daily living over the previous six weeks. Quality of life and utility were assessed by the Rheumatoid Arthritis Quality of Life questionnaire, the Short Form-6D, a transformed rating scale, and the time tradeoff. A cost-price analysis was conducted to estimate the costs of inpatient and day patient hospitalisations. Other healthcare and non-healthcare costs were estimated from cost questionnaires. RESULTS: 210 patients with RA (75% female, median age 59 years) were included. Aggregated over the two year follow up period, no significant differences were found on the quality of life and utility instruments. The costs of the initial treatment were estimated at euro 200 for clinical nurse specialist care, euro 5000 for inpatient team care, and euro 4100 for day patient team care. Other healthcare costs and non-healthcare costs were not significantly different. The total societal costs did not differ significantly between inpatients and day patients, but were significantly lower for the clinical nurse specialist patients by at least euro 5400. CONCLUSIONS: Compared with inpatient and day patient team care, clinical nurse specialist care was shown to provide equivalent quality of life and utility, at lower costs. Therefore, for patients with health conditions that allow for any of the three types of care, the preferred treatment from a health-economic perspective is the care provided by the clinical nurse specialist.