Rheumatic disorders concern a broad spectrum of painful disorders affecting the musculoskeletal system, and are responsible for a considerable amount of disease burden and also a substantial... Show moreRheumatic disorders concern a broad spectrum of painful disorders affecting the musculoskeletal system, and are responsible for a considerable amount of disease burden and also a substantial economic burden. This economic burden consists of direct and indirect costs, but also the so-called intangible costs. In this study, we estimated the societal cost of rheumatic disorders in the Netherlands, including intangible costs. Data from the National Monitor on Musculoskeletal System 2010 were used to assess resource used, multiplied with standard prices for the Netherlands to obtain total costs for the 1.8 million people suffering from rheumatic disorders. These estimates were supplemented with data from secondary sources. Total societal costs of rheumatic disorders in the Netherlands amount to €4.7 million a year, that is, €2665 per person with rheumatic disorders. Rheumatic disorders have considerable costs, which justify more attention in discussing investments in facing the challenges in our ageing Western societies. Show less
Allonsius, F.; Kloet, A.J. de; Markus-Doornbosch, F. van; Vlieland, T.P.M.V.; Holst, M. van der 2023
PurposeBrain 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... Show morePurposeBrain 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 methodsParents of patients that were referred to outpatient rehabilitation completed the PedsQL (TM) Family-Impact-Module questionnaire to assess the family impact and the parent-reported PedsQL (TM) 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.ResultsTwo-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 (TM) Family-Impact-Module score at baseline was 71.7 (SD:16.4) and PedsQL (TM) Generic-core-set-4.0: 61.4 (SD:17.0). Over time, PedsQL (TM) Family-Impact-Module scores remained stable, while PedsQL (TM) 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).ConclusionsFamily 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. Show less
Allonsius, F.; Kloet, A.J. de; Markus-Doornbosch, F. van; Meesters, J.J.L.; Kromme, C.H.; Vlieland, T.P.M.V.; Holst, M. van der 2021
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... Show morePurpose: 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 57-<24 years) with ABI referred to rehabilitation was performed. Patient/injury/family-characteristics were noted, and parents completed the PedsQL (TM) Family-Impact-Module and PedsQL (TM) 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 117-<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. Show less
Objectives: To describe health care use and its associated factors in the chronic phase after stroke. Methods: Patients completed a questionnaire on health care use, 58 years after hospital... Show moreObjectives: To describe health care use and its associated factors in the chronic phase after stroke. Methods: Patients completed a questionnaire on health care use, 58 years after hospital admission for stroke. It comprised the number of visits to physicians or other health care professionals over the past 6 months (Physician-visits; Low <= 1 or High >= 2) and other health care professionals (Low = 0 or High >= 1). In addition the Longer-term Unmet Needs after Stroke (LUNS), Frenchay Activity Index (FAI) and Physical and Mental Component Summary Scales of the Short Form 12 (PCS and MCS) were administered. Their associations with health care use (high, low) were determined by means of logistic regression analysis, adjusted for sex and age. Results: Seventy-eight of 145 patients (54%) returned the questionnaires; mean time-since-stroke was 80.3 months (SD10.2), age-at-stroke 61.7 years (SD13.8), and 46 (59%) were male. Physician contacts concerned mainly the general practitioner (58; 79.5%). Forty-one (52.6%) and 37 (47.4%) of the patients had a high use of physician and other health professionals visits, respectively. Worse PCS scores were associated with both high use of physician and other health professionals visits (OR.931; 95%CI.877-.987 and OR.941; 95%CI.891-.993, respectively), whereas the FAI, MCS, or LUNS were not related to health care use. Conclusions: Health care use after stroke is substantial and is related to physical aspects of health status, not to mental aspects, activities or unmet needs, suggesting a mismatch between patients' needs and care delivered. Show less
BackgroundAlthough 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... Show moreBackgroundAlthough 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.MethodsThis 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.DiscussionThe 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. Show less
Background. This study aimed to compare the health related quality of life (HRQoL) of children and adolescents after malignant bone tumor surgery of the leg with healthy controls. Procedure.... Show moreBackground. This study aimed to compare the health related quality of life (HRQoL) of children and adolescents after malignant bone tumor surgery of the leg with healthy controls. Procedure. Patients between 8 and 25 years old were cross-sectional recruited. Patients under 16 years of age received the TNO (Netherlands Organization for Applied Scientific Research) and AZL (Leiden University Medical Center) Children's Quality of Life Questionnaire (TACQOL), patients aged 16 years and older received the TNO-AZL Questionnaire for Adult's Quality of Life (TAAQOL) and the Short Form-36 (SF-36). Three age- and sex-matched normative random samples, drawn from large, nationwide studies, were used for the comparison with healthy controls. Patients were interviewed regarding their most important problems related to the disease and its treatment. Results. Eighty-one patients with a mean age of 16.9 years (SD 4.2) were included (41 female). Limb sparing surgery was executed in 38 patients, ablative surgery in 43 patients. In comparison with healthy controls, patients had significantly poorer HROoL within the domains autonomy and motor function of the TACQOL, gross motor function, cognitive functioning, daily functioning and sexuality of the TAAQOL, and physical functioning, role physical, general health, and the physical and mental component summary scales of the SF-36. Patients reported limitations in physical activities, participation in sports, and cosmetic aspects as the most detrimental consequences of their disease and its treatment. Conclusion. In children and adolescents who underwent surgery for a malignant tumor of the leg physical, functioning was significantly impaired as compared to healthy controls. Pediatr Blood Cancer 2010;54:738-745. (c) 2010 Wiley-Liss, Inc. Show less
PURPOSE: To systematically review published studies comparing Quality of Life (QoL), functional ability and/or physical activity between different surgical interventions due to a malignant bone... Show morePURPOSE: To systematically review published studies comparing Quality of Life (QoL), functional ability and/or physical activity between different surgical interventions due to a malignant bone tumour of the leg. METHODS: A systematic literature search, covering the years 2000-2010 was performed using the PubMed, Embase, Web of science and Cochrane databases. Studies were included if they described and statistically compared QoL, functional ability and/or physical activity of at least two surgical interventions for lower extremity bone cancer. In addition, the methodological quality of the selected studies was evaluated by using a 24-point scale. Where appropriate, a qualitative analysis or meta-analysis was performed. RESULTS: The search strategy resulted in a list of 246 citations. Based on titles and abstracts 50 full-text articles were selected, of which 13 articles describing 12 studies, were finally included. Overall, the methodological quality of the studies was moderate. Studies were heterogeneous with respect to their categorisation of surgical interventions, average age of patients and average duration of follow-up. Overall, results regarding differences between ablative and limb-sparing surgery varied largely. Meta-analysis was considered to be not appropriate due to clinical heterogeneity, methodological differences and flaws. CONCLUSION: Twelve studies comparing the outcomes of QoL, functional ability and physical activity between limb-sparing and ablative surgery groups were identified, with an overall moderate methodological quality. Their largely varying outcomes suggest that no general conclusions on the advantage of either limb-sparing or ablative surgery in patients with malignant bone tumours of the lower extremity can be drawn. Show less
Introduction: Informal caregivers often support nursing home residents with dementia in making therapeutic decisions. We explored the perceptions, needs and preferences of informal caregivers of... Show moreIntroduction: Informal caregivers often support nursing home residents with dementia in making therapeutic decisions. We explored the perceptions, needs and preferences of informal caregivers of nursing home residents with dementia regarding physical therapy.Method: We conducted eleven semi-structured interviews. Thematic analysis was used.Results: Five themes emerged: 1) visibility and familiarity; 2) communication; 3) aim and content; 4) dosage and location; 5) level of expertise and the role of the physical therapist within the interdisciplinary team. Informal caregivers' perceptions of physical therapy included a lack of visibility and familiarity. They needed more communication, and empathic communication skills of the physical therapists. Preferences included physical therapy to be enjoyable, accessible and tailored to the needs of the resident.Conclusion: Physical therapists need to involve informal caregivers in physical therapy care. Implementing shared decision-making will help to get informal caregivers more involved, but has yet to be studied in this setting. (C) 2022 Elsevier Inc. All rights reserved. Show less
Background To improve the use of eRehabilitation after stroke, the identification of barriers and facilitators influencing this use in different healthcare contexts around the world is needed.... Show moreBackground To improve the use of eRehabilitation after stroke, the identification of barriers and facilitators influencing this use in different healthcare contexts around the world is needed. Therefore, this study aims to investigate differences and similarities in factors influencing the use of eRehabilitation after stroke among Brazilian Healthcare Professionals (BHP) and Dutch Healthcare Professionals (DHP). Method A cross-sectional survey study including 88 statements about factors related to the use of eRehabilitation (4-point Likert scale; 1-4; unimportant-important/disagree-agree). The survey was conducted among BHP and DHP (physical therapists, rehabilitating physicians and psychologists). Descriptive statistics were used to analyse differences and similarities in factors influencing the use of eRehabilitation. Results ninety-nine (response rate 30%) BHP and 105 (response rate 37%) DHP participated. Differences were found in the top-10 most influencing statements between BHP and DHP BHP rated the following factors as most important: sufficient support from the organisation (e.g. the rehabilitation centre) concerning resources and time, and potential benefits of the use of eRehabilitation for the patient. DHP rated the feasibility of the use of eRehabilitation for the patient (e.g. a helpdesk and good instructions) as most important for effective uptake. Top-10 least important statements were mostly similar; both BHP and DHP rated problems caused by stroke (e.g. aphasia or cognitive problems) or problems with resources (e.g. hardware and software) as least important for the uptake of eRehabilitation. Conclusion The results indicate that the use of eRehabilitation after stroke by BHP and DHP is influenced by different factors. A tailored implementation strategy for both countries needs to be developed. Show less
Objective: To compare the effect on disability and quality of life, of conventional rehabilitation (control group) with individualized, tailored eRehabilitation intervention alongside conventional... Show moreObjective: To compare the effect on disability and quality of life, of conventional rehabilitation (control group) with individualized, tailored eRehabilitation intervention alongside conventional rehabilitation (Fast@home; intervention group), for people with stroke.Methods: Pre-post design. The intervention comprised cognitive (Braingymmer (R)) and physical (Telere-validatie (R)/Physitrack (R)) exercises, activity-tracking (Activ8 (R)) and psycho-education. Assessments were made at admission (T0) and after 3 (T3) and 6 months (T6). The primary outcome concerned disability (Stroke Impact Scale; SIS). Secondary outcomes were: health-related qual-ity of life, fatigue, self-management, participation and physical activity. Changes in scores be-tween T0-T3, T3-T6, and T0-T6 were compared by analysis of variance and linear mixed models.Results: The study included 153 and 165 people with stroke in the control and intervention groups, respectively. In the intervention group, 82 (50%) people received the intervention, of whom 54 (66%) used it. Between T3 and T6, the change in scores for the SIS subscales Communication (control group/ intervention group -1.7/-0.3) and Physical strength (-5.7/3.3) were significantly greater in the total intervention group (all mean differences< minimally clinically important differences). No significant differences were found for other SIS subscales or secondary outcomes, or between T0-T3 and T0-T6.Conclusion: eRehabilitation alongside conventional stroke rehabilitation had a small positive effect on communication and physical strength on the longer term, compared to conventional rehabilitation only. Show less