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Item does not contain fulltext, OBJECTIVES: Research on effectiveness and cost-effectiveness of longstanding exercise therapy in patients with axial SpondyloArthritis (axSpA) or Rheumatoid Arthritis (RA) is scarce, and mainly concerned patients with a relatively favorable health status. We aim to evaluate the effectiveness and cost-effectiveness of longstanding exercise therapy compared to usual care in the subgroup of patients with axSpA or RA and severe limitations in functioning. METHODS: In two separate, parallel randomized controlled trials the effectiveness and cost-effectiveness of longstanding, active exercise therapy (52 weeks) compared with usual care (1:1) will be evaluated. The longstanding, active exercise therapy will focus on improving individual limitations in daily activities and participation and will be given by a trained physical therapist in the vicinity of the participant. For each diagnosis, 215 patients with severe limitations in activities and participation will be included. Assessments are performed at baseline, 12, 26, and 52 weeks. The primary outcome measure of effectiveness is the individual level of functioning (activities and participation), as measured with the Patient-Specific Complaints instrument at 52 weeks. For cost-effectiveness analyses, the EuroQol (EQ-5D-5L) and questionnaires on healthcare use and productivity will be administered. The economic evaluation will be a cost-utility analysis from a societal perspective. After 52 weeks, the patients in the usual care group are offered longstanding, active exercise therapy as well. Follow-up assessments are done at 104, 156, and 208 weeks. CONCLUSION: The results of these studies will provide insights in the effectiveness and cost-effectiveness of longstanding exercise therapy in the subgroup of axSpA and RA patients with severe functional limitations.

Contains fulltext : 196905.pdf (Publisher’s version ) (Open Access), OBJECTIVE: To investigate construct validity and test-retest reliability of the parent-rated Hand-Use-at-Home questionnaire (HUH) in children with neonatal brachial plexus palsy or unilateral cerebral palsy. DESIGN AND SUBJECTS: For this cross-sectional study, children with neonatal brachial plexus palsy or unilateral cerebral palsy, aged 3-10 years, were eligible. MAIN MEASURES: The HUH, Pediatric Outcome Data Collection Instrument Upper Extremity Scale (neonatal brachial plexus palsy only), and Children's Hand-Use Experience Questionnaire (unilateral cerebral palsy only) were completed. The HUH was completed twice in subgroups of both diagnoses. Lesion-extent (indication of involved nerve rootlets in neonatal brachial plexus palsy as confirmed during clinical observation and/or nerve surgery) and Manual Ability Classification System levels (unilateral cerebral palsy) were obtained from the medical records. Spearman correlation coefficients between the HUH and all clinical variables, agreement, standard error of measurement, smallest detectable change and intra-class correlation were calculated. RESULTS: A total of 260 patients participated (neonatal brachial plexus palsy: 181), of which 56 completed the second HUH (neonatal brachial plexus palsy: 16). Median age was 6.9 years for children with neonatal brachial plexus palsy, 116 had C5-C6 lesions. Median age for children with unilateral cerebral palsy was 6.4 years, 33 had Manual Ability Classification System Level II. The HUH correlated moderately with lesion-extent ( rs =-0.5), Pediatric Outcome Data Collection Instrument Upper Extremity Scale ( rs = 0.6) and Children's Hand-Use Experience Questionnaire ( rs = 0.5) but weakly with Manual Ability Classification System levels ( rs = -0.4). Test-retest reliability was excellent (intra-class correlation2,1 = 0.89, standard error of measurement = 0.599 and smallest detectable change = 1.66 logits) and agreement was good (mean difference HUH1 - HUH2 = 0.06 logits). CO

Contains fulltext : 191315.pdf (publisher's version ) (Open Access), 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

Item does not contain fulltext, OBJECTIVE: To evaluate, from a societal perspective, the cost utility and cost effectiveness of a nonpharmacologic face-to-face treatment program compared with a telephone-based treatment program for patients with generalized osteoarthritis (GOA). METHODS: An economic evaluation was carried out alongside a randomized clinical trial involving 147 patients with GOA. Program costs were estimated from time registrations. One-year medical and nonmedical costs were estimated using cost questionnaires. Quality-adjusted life years (QALYs) were estimated using the EuroQol (EQ) classification system, EQ rating scale, and the Short Form 6D (SF-6D). Daily function was measured using the Health Assessment Questionnaire (HAQ) disability index (DI). Cost and QALY/effect differences were analyzed using multilevel regression analysis and cost-effectiveness acceptability curves. RESULTS: Medical costs of the face-to-face treatment and telephone-based treatment were estimated at euro387 and euro252, respectively. The difference in total societal costs was nonsignificantly in favor of the face-to-face program (difference euro708; 95% confidence interval [95% CI] -euro5,058, euro3,642). QALYs were similar for both groups according to the EQ, but were significantly in favor of the face-to-face group, according to the SF-6D (difference 0.022 [95% CI 0.000, 0.045]). Daily function was similar according to the HAQ DI. Since both societal costs and QALYs/effects were in favor of the face-to-face program, the economic assessment favored this program, regardless of society's willingness to pay. There was a 65-90% chance that the face-to-face program had better cost utility and a 60-70% chance of being cost effective. CONCLUSION: This economic evaluation from a societal perspective showed that a nonpharmacologic, face-to-face treatment program for patients with GOA was likely to be cost effective, relative to a telephone-based program.

Item does not contain fulltext, PURPOSE: To determine the effectiveness of an interactive educational intervention on a physiotherapy guideline for hip and knee osteoarthritis. METHOD: Physiotherapists were randomly allocated to a 3-h interactive educational course with the collaboration of three patient partners or no intervention. Assessments comprised questionnaires on adherence (score range 0-24), knowledge (score range 0-76), and barriers to use the guideline (score range 0-80). Assessments were conducted 1 week before the interactive course (T0) immediately after (T1), and 3 months thereafter (T2). Change scores were compared between the groups by means of Mann-Whitney U tests and linear mixed models. RESULTS: 284 of 4328 eligible PTs (7%) were included. The intervention (n = 133) was significantly more effective than no intervention (n = 151) concerning self-reported adherence and knowledge with mean differences in change scores (95% CI) at T1 and T2 being 1.4 (0.7-2.0) and 0.9 (0.2-1.7) for adherence and 6.8 (4.5-9.1) and 3.9 (1.7-6.2) for knowledge, (all p values < 0.005). In both groups the barrier score increased at T1 and decreased at T2, with a significantly larger increase at T1 and decrease at T2 in the intervention group (mean differences 3.1 (1.8-4.4) and 3.3 (0.5-6.1), respectively. CONCLUSIONS: A short interactive educational course with patient participation on a PT guideline on hip and knee osteoarthritis showed a small to moderate positive effect on self-reported guideline adherence and knowledge, whereas for perceived barriers an advantage was only seen on the longer term.

Item does not contain fulltext, OBJECTIVE: To compare the effectiveness of a non-pharmacological multidisciplinary face-to-face self-management treatment program with a telephone-based program on daily function in patients with generalized osteoarthritis (GOA). DESIGN: A pragmatic single-blind randomized clinical superiority trial involving 147 patients clinically diagnosed with GOA, randomly allocated to either a 6 week non-pharmacological multidisciplinary face-to-face treatment program comprising seven group sessions or a 6 week telephone-based treatment program comprising two group sessions combined with four telephone contacts. Both programs aimed to improve daily function and to enhance self-management to control the disease. The programs critically differed in mode of delivery and intensity. Daily function (primary outcome) and secondary outcomes were assessed at baseline, 6, 26 and 52 weeks. Data were analyzed using linear or logistic multilevel regression models corrected for baseline, sex and group-wise treatment. RESULTS: No differences in effectiveness between both treatment programs were observed on the primary outcome (group difference (95% CI): -0.03 (-0.14, 0.07)) or on secondary outcome measures, except for a larger improvement in pain in the face-to-face treatment group (group difference (95% CI): 1.61 (0.01, 3.21)). Within groups, significant improvements were observed on several domains, especially in the face-to-face group. However, these benefits are relatively small and unlikely to be of clinical importance. CONCLUSIONS: We found no differences in treatment effect between patients with GOA who followed a non-pharmacological multidisciplinary face-to-face self-management program and those who received a telephone-delivered program. Besides, our findings demonstrated limited benefits of a self-management program for individuals with GOA. Dutch Trial Register trial number: NTR2137.

Item does not contain fulltext, OBJECTIVE: Generalized OA (GOA) is highly prevalent in OA. Individuals with GOA typically suffer from limitations of both upper and lower extremity function, yet we lack a validated instrument to assess their activity limitations. An appropriate instrument might be the HAQ Disability Index (HAQ-DI). Therefore the aim of this study was to evaluate the measurement properties of the HAQ-DI in GOA. METHODS: Data were used from a randomized controlled trial comparing the effectiveness of two multidisciplinary treatment programmes for patients with GOA. One hundred and thirty-seven of 147 included patients completed a standardized set of questionnaires before and after treatment. Interpretability, validity, reliability and responsiveness of the HAQ-DI were assessed using the Consensus-Based Standards for the Selection of Health Status Measurement Instruments checklist (COSMIN). RESULTS: Floor and ceiling effects were present. The content validity was questionable since the HAQ-DI encompasses activities that are either not relevant or too easy to perform as judged by patients and experts. Construct validity was good since 90% of the hypotheses were confirmed. Factor analysis confirmed the unidimensionality of the HAQ-DI (root mean square error of approximation = 0.057, chi(2)/df ratio = 1.48). Cronbach's alpha was 0.90, confirming internal consistency and the ICC was 0.81, reflecting good reliability. The minimal important change was 0.25 and the smallest detectable change was 0.60. We could not establish the responsiveness of the HAQ-DI. CONCLUSION: The HAQ-DI showed good construct validity, internal consistency and reliability, whereas its content validity and responsiveness were limited. We recommend updating the items of the HAQ-DI in future research focusing on functional limitations in GOA. TRIAL REGISTRATION: Dutch Trial Register NTR2137, http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=2137.

Contains fulltext : 154152.pdf (publisher's version ) (Closed access), The involvement of multiple joints is common in osteoarthritis (OA), often referred to as generalized osteoarthritis (GOA). However, since research and practice mainly focus on a specific OA localization, the health status of patients with GOA is largely unknown. Therefore, we aimed to describe the clinical burden of GOA in terms of self-reported health-related quality of life (HRQoL) and activity limitations. In this cross-sectional study, individuals clinically diagnosed with GOA and referred to multidisciplinary treatment, completed questionnaires on socio-demographics, joint involvement, HRQoL (SF-36) and activity limitations (HAQ-DI). SF-36 physical (PCS) and mental component summary scores (MCS) were calculated using norm-based data. The patient's specific most important activity limitations were linked to the International Classification of Functioning, Disability and Health. A total of 147 patients participated [85 % female; mean (SD) age 60 (8) years]. The majority (93 %) had symptomatic OA in both the upper and lower extremities. Predominant joints with symptomatic OA were the hands (85 %) and knees (82 %). Mean (SD) SF-36 PCS and MCS scores were 37 (7) and 48 (10), respectively, showing a broad impact of GOA on the physical component of health. The mean (SD) HAQ-DI score was 1.27 (0.50) indicating moderate to severe functional limitations. Activities concerning mobility and domestic life were considered most important activity limitations, especially walking. The results show a high clinical burden of GOA in terms of HRQoL and activity limitations. This study points to the need of developing non-pharmacological interventions for patients with GOA that should target on improving the physical component of health and mobility limitations.

Item does not contain fulltext, 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.

Item does not contain fulltext, OBJECTIVE: To improve the management of hip or knee osteoarthritis (OA), a stepped care strategy (SCS) has been developed that presents the optimal sequence for care in three steps. This study evaluates the extent to which clinical practice is consistent with the strategy after implementation and identifies determinants of SCS-consistent care. DESIGN: A 2-year observational prospective cohort study. SETTING: General practices in the region of Nijmegen in the Netherlands. PARTICIPANTS: Three hundred and thirteen patients with hip or knee OA and their general practitioner (GP). INTERVENTIONS: Multifaceted interventions were developed to implement the strategy. MAIN OUTCOME MEASURES: Consistency between clinical practice and the strategy was examined regarding three aspects of care: (i) timing of radiological assessment, (ii) sequence of non-surgical treatment options and (iii) making follow-up appointments. RESULTS: Out of the 212 patients who reported to have had an X-ray, 92 (44%) received it in line with the SCS. The sequence of treatment was inconsistent with the SCS in 58% of the patients, which was mainly caused by the underuse of lifestyle advice and dietary therapy. In 57% of the consultations, the patient reported to have been advised to make a follow-up appointment. No determinants that influenced all three aspects of care were identified. CONCLUSIONS: Consistency with the SCS was found in about half of the patients for each of the three aspects of care. Health care can be further optimized by encouraging GP s to use X-rays more appropriately and to make more use of lifestyle advice, dietary therapy and follow-up appointments.

Item does not contain fulltext, BACKGROUND: A stepped care strategy (SCS) to improve adequate healthcare use in patients with osteoarthritis was developed and implemented in a primary care region in the Netherlands. AIM: To assess the association between care that is in line with the SCS recommendations and health outcomes. DESIGN AND SETTING: Data were used from a 2-year observational study of 313 patients who had consulted their GP because of osteoarthritis. METHOD: Care was considered 'SCS-consistent' if all advised modalities of the previous steps of the SCS were offered before more advanced modalities of subsequent steps. Pain and physical function were measured with the Western Ontario and McMaster Universities Osteoarthritis Index (range 0-100); active pain coping with the Pain Coping Inventory (range 10-40); and self-efficacy with the Dutch General Self-Efficacy Scale (range 12-48). Crude and adjusted associations between SCS-consistent care and outcomes were estimated with generalised estimating equations. RESULTS: No statistically significant differences were found in changes over a 2-year period in pain and physical function between patients who received SCS-inconsistent care (n = 163) and patients who received SCS-consistent care (n = 117). This was also the case after adjusting for possible confounders, that is, -4.3 (95% confidence interval [CI] = -10.3 to 1.7) and -1.9 (95% CI = -7.0 to 3.1), respectively. Furthermore, no differences were found in changes over time between groups in self-efficacy and pain coping. CONCLUSION: The results raised several important issues that need to be considered regarding the value of the SCS, such as the reasons that GPs provide SCS-inconsistent care, the long-term effects of the SCS, and the effects on costs and side effects.

Item does not contain fulltext, OBJECTIVE: To enhance guideline-based nonsurgical management of osteoarthritis (OA), a multidisciplinary stepped-care strategy has been implemented in clinical practice. This study aimed to describe health care use after implementation of this strategy and to identify factors related to such use at multiple levels. METHODS: For this 2-year observational prospective cohort, patients with symptomatic hip or knee OA were included by their general practitioner. Activities aligned with patients and health care providers were executed to implement the strategy. Health care use was described as the cumulative percentage of "users" for each modality recommended in the strategy. Determinants were identified at the level of the patient, general practitioner, and practice using backward stepwise logistic multilevel regression models. RESULTS: Three hundred thirteen patients were included by 70 general practitioners of 38 practices. Their mean +/- SD age was 64 +/- 10 years and 120 (38%) were men. The most frequently used modalities were education, acetaminophen, lifestyle advice, and exercise therapy, which were used by 242 (82%), 250 (83%), 214 (73%), and 187 (63%) patients, respectively. Fourteen percent of the overweight patients reported being treated by a dietician. Being female, having an active coping style, using the booklet "Care for Osteoarthritis," and having limitations in functioning were recurrently identified as determinants of health care use. CONCLUSION: After implementation of the stepped-care strategy, most recommended nonsurgical modalities seem to be well used. Health care could be further improved by providing dietary therapy in overweight patients and making more efforts to encourage patients with a passive coping style to use nonsurgical modalities.

Contains fulltext : 117534.pdf (publisher's version ) (Open Access), BACKGROUND: To improve the management of hip or knee osteoarthritis (OA), a multidisciplinary guideline-based stepped-care strategy (SCS) with recommendations regarding the appropriate non-surgical treatment modalities and optimal sequence for care has been developed. Implementation of this SCS in the general practice may be hampered by the negative attitude of general practitioners (GPs) towards the strategy. In order to develop a tailored implementation plan, we assessed the GPs' views regarding specific recommendations in the SCS and their working procedures with regard to OA. METHODS: A survey was conducted among a random sample of Dutch GPs. Questions included the GP's demographical characteristics and the practice setting as well as how the management of OA was organized and whether the GPs supported the SCS recommendations. In particular, we assessed GP's views regarding the effectiveness of 14 recommended and non-recommended treatment modalities. Furthermore, we calculated their agreement with 7 statements based on the SCS recommendations regarding the sequence for care. With a linear regression model, we identified factors that seemed to influence the GPs' agreement with the SCS recommendations. RESULTS: Four hundred fifty-six GPs (37%) aged 30-65 years, of whom 278 males (61%), responded. Seven of the 11 recommended modalities (i.e. oral Non-Steroidal Anti-Inflammatory Drugs, physical therapy, glucocorticoid intra-articular injections, education, lifestyle advice, acetaminophen, and tramadol) were considered effective by the majority of the GPs (varying between 95-60%). The mean agreement score, based on a 5-point scale, with the recommendations regarding the sequence for care was 2.8 (SD = 0.5). Ten percent of the variance in GPs' agreement could be explained by the GPs' attitudes regarding the effectiveness of the recommended and non-recommended non-surgical treatment modalities and the type of practice. CONCLUSION: In general, GPs support the recommenda

Contains fulltext : 125747.pdf (publisher's version ) (Open Access), BACKGROUND: To enhance guideline-based non-surgical management of hip or knee osteoarthritis (OA), a multidisciplinary, stepped-care strategy has been implemented in primary care in a region of the Netherlands. To facilitate this implementation, the self-management booklet "Care for Osteoarthritis" was developed and introduced. The aim of the booklet was to educate patients about OA, to enhance the patient's active role in the treatment course, and to improve the communication with health care providers. To successfully introduce the booklet on a large scale we assessed barriers and facilitators for patients to using this booklet. METHODS: Seventeen primary care patients with hip or knee OA who received the self-management booklet participated in this qualitative study using semi-structured interviews. Purposive sampling was used to ensure diversity of the patients' view about the booklet. The interviews were transcribed verbatim and analysed using a thematic analysis approach. RESULTS: Three core themes with patient perceived barriers and facilitators to use the booklet emerged from the interviews: 1) the role of health care providers, 2) the patient's perceptions about OA and its manageability, and 3) the patient's perceptions about the usefulness of the booklet and patient's information needs. Regarding the first theme, a barrier was the lack of encouragement from health care providers to use the booklet in the treatment course of OA. Moreover, patients had doubts concerning the health care providers' endorsement of non-surgical treatment for OA. Barriers from the second theme were: thinking that OA is not treatable or that being pro-active during the treatment course is not important. In contrast, being convinced about the importance of an active participation in the treatment course was a facilitator. Third, patients' perceptions about the usefulness of the booklet and patients' information needs were both identified as barriers as well as facilitators for book

1 juni 2010, Contains fulltext : 88611.pdf (publisher's version ) (Closed access), OBJECTIVE: To evaluate the implementation of an intensive group exercise program in patients with rheumatoid arthritis (RA). METHODS: In 4 regions in The Netherlands, the Rheumatoid Arthritis Patients In Training exercise program was implemented on a limited scale. Evaluation using the RE-AIM model included: Reach, the proportion of the target population participating; Efficacy, effects on muscle strength, aerobic capacity, functional ability, and psychological functioning; Adoption, program adoption by stakeholders; Implementation, intervention quality (quality audits); and Maintenance, stakeholders' willingness to continue the program in the future. RESULTS: Twenty-five physical therapists from 14 practices were trained to provide the program. In total, 150 RA patients were recruited (by estimation, 2% of the target population). Of the 81 patients who had finished the 12-month intervention and were available for followup directly after the intervention, 62 patients provided clinical data. Muscle strength improved significantly, whereas aerobic capacity, functional ability, psychological functioning, and disease activity did not change. All 9 informed local patient organizations facilitated patient recruitment, and 35 of 51 rheumatologists involved referred one or more patients. All 10 approached health insurance companies funded the program for 12 months. The quality audits showed sufficient quality in 9 of 12 practices. All of the providers of the program were willing to provide the program in the future, whereas future reimbursement by health insurance companies remained unclear. CONCLUSION: The implementation of an intensive exercise program for RA patients on a limited scale can be considered successful regarding its reach, adoption, and implementation. The limited effectiveness and the limited data regarding maintenance warrant additional research.

Contains fulltext : 88985.pdf (publisher's version ) (Closed access), The quality and efficiency of allied health care in Parkinson's disease (PD) must be improved. We have developed the ParkinsonNet concept: a professional regional network within the catchment area of hospitals. ParkinsonNet aims to: (1) improve PD-specific expertise among allied health personnel, by training a selected number of therapists according to evidence-based guidelines; (2) enhance the accuracy of referrals by neurologists; (3) boost patient volumes per therapist, by stimulating preferred referral to ParkinsonNet therapists; and (4) stimulate collaboration between therapists, neurologists, and patients. We describe the procedures for developing a ParkinsonNet network. Our initial experience with this new concept is promising, showing an increase in PD-specific and a steady rise in the patient volume of individual therapists.