The educational needs of people with systemic sclerosis: a cross-sectional study using the Dutch version of the Educational Needs Assessment Tool (D-ENAT)

© 2015, The Author(s). The Dutch Educational Needs Assessment Tool (D-ENAT) systematically assesses educational needs of patients with rheumatic diseases. The present study aims to describe the educational needs of Dutch patients with systemic sclerosis (SSc). The D-ENAT was sent to 155 SSc patients registered at the outpatient clinic of a university hospital. The D-ENAT consists of 39 items in seven domains. “Each domain has different number of items therefore we normalized each domain score: (domain score/maximum)×100) and expressed in percentage to enable comparisons between domains.” 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 information need (1–4; wanting to know nothing–everything) were recorded. Univariate regression analysis was used to examine factors associated with the D-ENAT scores. The response rate was 103 out of 155 (66%). The mean % of educational needs scores (0–100%; lowest–highest) were 49% for “D-ENAT total score,” 46% for “Managing pain,” 41% for “Movement,” 43% for “Feelings,” 59% for “Disease process,” 44% for “Treatments from health professionals,” 61% for “Self-help measures” and 51% for “Support systems.” No associations between the D-ENAT total score and age, disease duration, gender and educational level were found. The D-ENAT demonstrated its ability to identify educational needs of Dutch SSc patients. SSc patients demonstrated substantial educational needs, especially in the domains: “Disease process” and “Self-help measures.” The validity and practical applicability of the D-ENAT to make an inventory of SSc patients’ educational needs require further investigation

What is Important in E-health Interventions for Stroke Rehabilitation? A Survey Study among Patients, Informal Caregivers, and Health Professionals.

Incorporating user requirements in the design of e-rehabilitation interventions facilitates their implementation. However, insight into requirements for e-rehabilitation after stroke is lacking. This study investigated which user requirements for stroke e-rehabilitation are important to stroke patients, informal caregivers, and health professionals. The methodology consisted of a survey study amongst stroke patients, informal caregivers, and health professionals (physicians, physical therapists and occupational therapists). The survey consisted of statements about requirements regarding accessibility, usability and content of a comprehensive stroke e-health intervention (4-point Likert scale, 1=unimportant/4=important). The mean with standard deviation was the metric used to determine the importance of requirements. Patients (N=125), informal caregivers (N=43), and health professionals (N=105) completed the survey. The mean score of user requirements regarding accessibility, usability and content for stroke e-rehabilitation was 3.1 for patients, 3.4 for informal caregivers and 3.4 for health professionals.  Data showed that a large number of user requirements are important and should be incorporated into the design of stroke e-rehabilitation to facilitate their implementation.

Systematic review on the comparative effectiveness of foot orthoses in patients with rheumatoid arthritis

Background: Foot orthoses (FOs) are prescribed as an important conservative treatment option in patients with foot problems related to rheumatoid arthritis. However, a broad variation in FOs is used, both in clinical practice and in research. To date, there is no overview on the outcomes of the treatment with different kinds of FOs in patients with rheumatoid arthritis and a specific foot problem. The objectives of the present study were to summarize the comparative effectiveness of FOs in the treatment of various foot problems in patients with rheumatoid arthritis, on the primary outcomes foot function and foot pain, and the secondary outcomes physical functioning, health related quality of life, compliance, adverse events, the costs of FOs and patient satisfaction. Methods: Studies comparing different kinds of FOs, with a presumed therapeutic effect, in the treatment of foot problems related to rheumatoid arthritis were included. A literature search was conducted in The Cochrane Central Registry for Controlled Trials (CENTRAL), PubMed, EMBASE and PEDro up to May 18th, 2018. Data was meta-analyzed, when this was not possible qualitative data analysis was performed. Results: Ten studies were identified, with a total number of 235 patients. These studies made a comparison between different materials used (soft versus semi-rigid), types of FOs (custom-made versus ready-made; total-contact versus non-total contact), or modifications applied (metatarsal bars versus domes). Also, different techniques to construct custom-made FOs were compared (standard custom-molding techniques versus more sophisticated techniques). A medium effect for (immediate) reduction of forefoot plantar pressure was found in favor of treatment with soft FOs compared to semi-rigid FOs (SMD 0.60, 95% CI 0.07-1.14; P = 0.03; 28 participants). Other comparisons between FOs resulted in non-significant effects or inconclusive evidence for one kind of FOs over the other. Conclusions: Foot orthoses made of soft materials may lead to more (immediate) forefoot plantar pressure reduction compared to foot orthoses constructed of semi-rigid materials. Definitive high quality RCTs, with adequate sample sizes and long-term follow-up, are needed to investigate the comparative (cost-) effectiveness of different kinds of foot orthoses for the treatment of foot problems related to rheumatoid arthritis

Adaptation and cross-cultural validation of the foot impact scale for rheumatoid arthritis (FIS-RA) using Rasch analysis

Objective. To adapt and crossculturally validate the Foot Impact Scale for Rheumatoid Arthritis (FIS-RA) using Rasch analysis. Methods. The FIS-RA was translated from English to German, Hungarian, and Dutch target languages and administered to 653 rheumatoid arthritis patients. Rasch analysis was undertaken on the impairment/footwear (FIS-RA IF) and activity limitation/participation restriction subscales for each language version separately and for pooled data. Overall fit to the Rasch model, item and person fit, unidimensionality, differential item function (DIF), and local response dependency were tested. To meet Rasch model assumptions, item deletion, subtests analysis, and item-splitting strategies were adopted. Results. With the exception of the Hungarian FIS-RA IF subscale, preliminary fit to the Rasch model was unsuccessful for all target languages individually and for pooled data. Multidimensionality, misfitting items, local dependency, and DIF by age, sex, disease duration, and language were observed. With adjustment, fit to the Rasch model was satisfactorily achieved for all language versions. For the pooled data, the Rasch model assumptions for crosscultural validity were met following item deletion, subtest analysis, and item splitting for language DIF. Conclusion. With adaptations, the FIS-RA was successfully translated and crossculturally validated for use in 4 European languages. The 2 subscales can be used at the individual level for patient assessment and at the group level for research purposes.</p

Changes in the ability to participate in and satisfaction with social roles and activities in patients in outpatient rehabilitation

Background: One of the main aims of rehabilitation is to improve participation. Patient-Reported Outcomes Measurement Information System (PROMIS®) item banks ‘Ability to Participate in Social roles and Activities, (PROMIS-APS) and ‘Satisfaction with Social Roles and Activities’ (PROMIS-SPS) are promising options to measure participation, but the literature on PROMIS measures of (satisfaction with) participation across diagnoses in rehabilitation is limited. Therefore, the objective of this study was to describe levels of and changes in participation, as assessed with the PROMIS-APS and the PROMIS-SPS short forms, of patients in outpatient rehabilitation. Methods: This study had quantitative, observational design with assessments at admission and discharge. Consecutive patients treated between April and August 2018 receiving outpatient multidisciplinary rehabilitation were the population of this study. The following diagnosis categories were included: brain injury (e.g. stroke), spinal cord and nerve injury, neuromuscular disorder (e.g. lateral sclerosis), amputation, musculoskeletal condition (e.g. osteoarthritis) or heart or lung disease (e.g. myocardial infarction, chronic obstructive pulmonary disease). The main patient-reported outcomes (PRO) of this study were the short form of the PROMIS-APS (8 items, Dutch general population reference score 50.6 [SD 9.5]), and PROMIS-SPS (8 items, Dutch general population reference score 47.5 [SD 8.3]. Results: Of the 1279 patients invited, 777 (61%) completed the online forms at admission. Of those, 329 patients were invited at discharge, with 209 (64%) completing the forms. The mean (SD) T-scores of the PROMIS-APS and PROMIS-SPS were lower at admission (42.7 [SD 7.4]; (41.4 [SD 7.7]) and discharge (43.6 [SD 7.2]; (43.7 [SD 7.8]) than the Dutch general population. The change scores of the PROMIS-APS and PROMIS-SPS were 1.2 (95% CI 0.4–1.9; p = 0.004; effect size 0.16), and 2.4 (95% CI 1.6–3.2; p 30 paired measurements statistically significant improvements of PROMIS-APS, PROMIS-SPS or both were seen. Conclusions: Patients undergoing outpatient rehabilitation had, both at admission and discharge, considerably lower PROMIS-APS and PROMIS-SPS T-scores short forms than the general Dutch population, and showed small T-score improvements at discharge

Patients' pre-operative general and specific outcome expectations predict postoperative pain and function after total knee and total hip arthroplasties

Background and aims Previous studies have suggested there is an association between preoperative expectations about the outcome and outcomes of total knee and total hip arthroplasty (TKA/THA). However, expectations have been rarely examined on their clinical relevance relative to other well-known predictive factors. Furthermore expectations can be measured on a more generic level (e.g. does one expect their symptoms to improve after surgery) or on a more specific level (e.g. does one expect to be able to squat again after surgery). Aim of this study was to examine whether patients' general and specific preoperative outcome expectations predict function and pain 12-months after TKA/THA, when assessed as one of the candidate predictive variables alongside other relevant clinical and sociodemographic variables. Moreover, we explored whether a more generic or a more specific assessment of expectations would better predict outcome. Methods A prospective cohort study on consecutive TKA/THA patients, with assessments done preoperatively and 12-months postoperative. Primary outcomes were the knee injury and osteoarthritis outcome score (KOOS) and hip injury and osteoarthritis outcome score (HOOS) activities of daily living (ADL) and pain subscale scores at 12-months. The pain subscales consist of nine-(KOOS) and 10-(HOOS) items and the ADL of 17 items. Patients' preoperative outcome expectations were measured with the credibility expectancy questionnaire (CEQ), which contains three items scored on a 0-9 scale and sum score 0-27 and the Hospital for Special Surgery expectations surveys (HSS expectation surveys) for 17(TKA) or 18(THA) outcomes on 0-4 scale. Other candidate predictors: preoperative pain and function as measured with HOOS/KOOS, sex, age, education level, body mass index, Kellgren/Lawrence score, preoperative mental health and treatment credibility as measured with CEQ. Eight prediction models were constructed using multivariate linear regression analysis with a backward selection procedure. Results The 146 TKA patients included in this study had a mean age of 66.9 years (SD 9.2) and 69% was female. The 148 THA patients had a mean age 67.2 (SD 9.5) and 57% was female. Mean outcomes: postoperative HOOS-ADL 84.3 (SD 16.6), pain 88.2 (SD 15.4), KOOS-ADL 83.9 (SD 15.8) and pain 83.6 (SD 17.1). CEQ-expectancy median was in THA 23 (IQR 21;24) and TKA 23 (IQR 20;24). HSS-expectation surveys function was for THA 21.0 (18.0;24.0) and 19.0 (14.0;22.0) in TKA. Patients' outcome expectations were consistently part of the combination of variables that best predicted outcomes for both TKA/THA 1-year post-operatively. Expectations alone explained between 17.0 and 30.3% of the variance in outcomes. The CEQ expectancy subscale explained more variance of postoperative function in TKA and of function and pain in THA as compared to the HSS expectation surveys. Conclusions In planning of surgical treatment, orthopedic surgeons should take a range of variables into account of which the patient's expectations about outcome of surgery is one. The CEQ expectancy subscale predicted outcomes slightly better as the HSS expectation surveys, but differences in predictive value of the two measurements were too small to prefer between the two. Future studies are advised to replicate these findings and externally validate the models presented