The role of the patient with rheumatoid arthritis in multidisciplinary care

Rheumatoid arthritis (RA) is a chronic disease requiring immediate pharmacological treatment. Chronically-ill patients may also benefit from self-management support and multidisciplinary care. This thesis focused on 1) self-management support, and 2) productive interactions between the informed patient and the multidisciplinary care team as applied to the management of RA, with a focus on the patient perspective. With respect to self-management support, this thesis showed that there is a considerable information need among RA patients. An instrument to systematically assess information need (the Dutch ENAT) was translated and tested among RA patients. A website to inform patients about practical aspects of regional health care services had a positive effect on the information need of RA patients. Concerning multidisciplinary team care, this thesis suggests that despite advances in (non-)pharmacological care, subgroups of RA patients remain in need of multidisciplinary team care. The WHODAS II was found to be a valid and responsive instrument to evaluate the effectiveness of team care. However, the ICF Core Sets for RA appeared to be the most useful instrument to make a comprehensive assessment of the RA patient and to optimize goal setting and goal evaluation, as they best covered the aspects considered important by patients.The studies in chapter 3 and 4 were financially supported by a ZonMw Research Grant.UBL - phd migration 201

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.Orthopaedics, Trauma Surgery and Rehabilitatio

Counselled patients with stroke still experience sexual and relational problems 1-5 years after stroke rehabilitation

To describe sexual functioning/satisfaction and relational satisfaction of patients with stroke who received sexual counselling during their rehabilitation 1-5 years thereafter. All adult patients with stroke admitted to one Dutch Rehabilitation Centre between January 2010 and January 2014 with at least two consultations with a sexologist were invited to participate in this cross-sectional survey study. Patients were asked to complete a questionnaire on sexual functioning, relational satisfaction (Maudsley Marital Questionnaire, 0-80; low-high dissatisfaction), health-related quality of life (HRQoL) short-form12 (SF-12) mental and physical component scale (MCS and PCS; 0-100, low-high HRQoL) and mood Hospital Anxiety Depression Scale (HADS, 0-21 low-high depression/anxiety). Descriptive statistics were used for sexual functioning/satisfaction and relational satisfaction. Spearmans's correlation analysis (rs) analyzed the relationships between sexual satisfaction, relational satisfaction, PCS, MCS, depression and anxiety. Of 296 eligible patients, 62 (21%) completed the questionnaires. Mean age 55.4 (SD11.0) years, time-since-stroke 3.5 (SD3.6) years, 33 (53%) were male and 18 (29%) were single. Being sexually (very) unsatisfied was reported by 31 (54%) responders, with 63% being male and 44% female. Median MMQ-score relational satisfaction was 12.0 (IQR 4.25-23.25). A moderate correlation was present between sexual and relational satisfaction (rs = 0.35, p = 0.02). In male respondents relational satisfaction was highly correlated with lower levels of anxiety (rs = 0.54, p = 0.01) and depressive symptoms (rs = 0.71, p = 0.00). Patients with stroke who received sexual counselling during their rehabilitation treatment experience high relational satisfaction in the long term after stroke, despite their problems in sexual functioning.Orthopaedics, Trauma Surgery and Rehabilitatio

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 57-6 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.Orthopaedics, Trauma Surgery and Rehabilitatio

Why the uptake of eRehabilitation programs in stroke care is so difficulta focus group study in the Netherlands

Analysis and support of clinical decision makin

A multicomponent intervention to decrease sedentary time during hospitalization: a quasi-experimental pilot study

Objective:The aim of this study was to evaluate the feasibility and preliminary effects of a multicomponent intervention to decrease sedentary time during and shortly after hospitalization.Design:This is a quasi-experimental pilot study comparing outcomes in patients admitted before and after the implementation of the intervention.Setting:The study was conducted in a university hospital.Subjects:Participants were adult patients undergoing elective organ transplantation or vascular surgery.Interventions:In the control phase, patients received usual care, whereas in the intervention phase, patients also received a multicomponent intervention to decrease sedentary time. The intervention comprised eight elements: paper and digital information, an exercise movie, an activity planner, a pedometer and Fitbit Flex (TM), a personal activity coach and an individualized digital training program.Measures:Measures of feasiblity were the self-reported use of the intervention components (yes/no) and satisfaction (low-high = 0-10). Main outcome measure was the median % of sedentary time measured by an accelerometer worn during hospitalization and 7-14 days thereafter.Results:A total of 42 controls (mean age = 59 years, 62% male) and 52 intervention patients (58 years, 52%) were included. The exercise movie, paper information and Fitbit Flex were the three most frequently used components, with highest satisfaction scores for the fitbit, paper information, exercise movie and digital training. Median sedentary time decreased from 99.6% to 95.7% and 99.3% to 91.0% between Days 1 and 6 in patients admitted in the control and intervention phases, respectively. The difference at Day 6 reached statistical significance (difference = 41 min/day, P = 0.01). No differences were seen after discharge.Conclusion:Implementing a multicomponent intervention to reduce sedentary time appeared feasible and may be effective during but not directly after hospitalization.Vascular Surger

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

ObjectiveTo 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. MethodsThis 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. ConclusionStroke 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.Analysis and Stochastic

Patients' outcome expectations and their fulfilment in multidisciplinary stroke rehabilitation

BackgroundPatients’ expectations of the outcomes of rehabilitation may influence the outcomes and satisfaction with treatment.ObjectivesFor stroke patients in multidisciplinary rehabilitation, we aimed to explore patients’ outcome expectations and their fulfilment as well as determinants.MethodsThe Stroke Cohort Outcomes of REhabilitation (SCORE) study included consecutive stroke patients admitted to an inpatient rehabilitation facility after hospitalisation. Outcome expectations were assessed at the start of rehabilitation (admission) by using the three-item Expectancy scale (sum score range 3–27) of the Credibility/Expectancy Questionnaire (CEQ). After rehabilitation, patients answered the same questions formulated in the past tense to assess fulfilment of expectations. Baseline patient characteristics were recorded and health-related quality of life (EQ-5D) was measured at baseline and after rehabilitation. The number of patients with expectations unfulfilled or fulfilled or exceeded was computed by subtracting the admission and discharge CEQ Expectancy scores. Multivariable regression analysis was used to determine the factors associated with outcome expectations and their fulfilment, estimating odds ratios (ORs) and 95% confidence intervals (CIs).ResultsWe included 165 patients (96 males [58.2%], mean (SD) age 60.2 years [12.7]) who completed the CEQ Expectancy instrument at admission (median score 21.6, interquartile range [IQR] 17.0–24.0); 79 completed it both at admission (median score 20.6, IQR 16.6–24.4) and follow-up (median score 20.0, IQR 16.4–22.8). For 40 (50.6%) patients, expectations of therapy were fulfilled or exceeded. No patient characteristic at admission was associated with baseline CEQ Expectancy score. Odds of expectation fulfilment were associated with low expectations at admission (OR 0.70, 95% CI 0.60–0.83) and improved EQ-5D score (OR 1.35, 95% CI 1.04–0.75).ConclusionsIn half of the stroke patients in multidisciplinary rehabilitation, expectations were fulfilled or exceeded, most likely in patients with low expectations at admission and with improved health-related quality of life. More research into the role of health professionals regarding the measurement, shaping and management of outcome expectations is needed.Analysis and Stochastic

Societal burden of stroke rehabilitation: costs and health outcomes after admission to stroke rehabilitation

Objective: To estimate societal costs and changes in health-related quality of life in stroke patients, up to one year after start of medical specialist rehabilitation.& nbsp; Design: Observational.& nbsp; Patients: Consecutive patients who received med ical specialist rehabilitation in the Stroke Cohort Out-comes of REhabilitation (SCORE) study.& nbsp; Methods: Participants completed questionnaires on health-related quality of life (EuroQol EQ-5D-3L), absenteeism, out-of-pocket costs and healthcare use at start and end of rehabilitation and 6 and 12 months after start. Clinical characteristics and reha-bilitation costs were extracted from the medical and financial records, respectively.& nbsp; Results: From 2014 to 2016 a total of 313 stroke patients completed the study. Mean age was 59 (standard deviation (SD) 12) years, 185 (59%) were male, and 244 (78%) inpatients. Mean costs for inpatient and outpatient rehabilitation were US$70,601 and US$27,473, respectively. For in-patients, utility (an expression of quality of life) in-creased significantly between baseline and 6 months (EQ-5D-3L 0.66 & ndash;0.73, p = 0.01; visual analogue scale 0.77 & ndash;0.82, p < 0.001) and between baseline and 12 months (visual analogue scale 0.77 & ndash;0.81, p < 0.001).& nbsp; Conclusion: One-year societal costs from after the start of rehabilitation in stroke patients were con-siderable. Future research should also include costs prior to rehabilitation. For inpatients, health-related quality of life, expressed in terms of utility, improved significantly over time.Analysis and support of clinical decision makin