Jorit Meesters

Measuring educational needs among patients with rheumatoid arthritis using the Dutch version of the Educational Needs Assessment Tool (DENAT)

The Educational Needs Assessment Tool (ENAT) was developed in the United Kingdom (UK) to systematically assess the educational needs of patients with arthritis. The aim of the present study was to describe the educational needs of Dutch patients with rheumatoid arthritis (RA) by using the Dutch version of the ENAT (DENAT). The original UK version of the ENAT, comprising 39 items grouped into seven domains, was translated into Dutch according to international guidelines for cross-cultural translation and adaptation. The DENAT was then sent to a random sample of 319 RA patients registered at the outpatient clinic of a university hospital. For each domain (score range 1–5, equalling low–high educational needs), a median score with the inter-quartile range was computed. The Kruskal–Wallis test was used to determine possible associations between educational needs and age, disease duration, gender and educational background. The response rate was 165 out of 319 (52%). The median educational needs scores were 2.5 for “managing pain”, 3.0 for “movement”, 2.0 for “feelings”, 4.0 for “arthritis process”, 4.0 for “treatments from health professionals”, 3.5 for “self-help measures” and 2.5 for “support systems”. Lower age and shorter disease duration were associated with more educational needs in the domain “support systems”. In addition, younger patients had more educational needs regarding managing pain and feelings than older patients. There were no associations between gender or educational background and educational needs. The DENAT has demonstrated its ability to identify individual educational needs of Dutch patients with RA. The lower age and shorter disease duration were associated with more educational needs. The practical applicability of the DENAT needs further research.

Unmet information needs about the delivery of rheumatology health care services: A survey among patients with rheumatoid arthritis

OBJECTIVE To measure patient-perceived knowledge and information need regarding regional health care services and their determinants among 400 patients with rheumatoid arthritis (RA) and to identify the preferred method of information provision. METHODS Postal survey on knowledge and information need (content and accessibility) of 18 regional health care services and preferences for the mode of delivery of information. Logistic regression analyses determined which factors were associated with insufficient knowledge and information need. RESULTS Two-hundred and thirty-seven (94%) patients reported insufficient knowledge about the contents and 235 (94%) about the accessibility of at least one health care services, whereas 172 patients (69%) reported an information need about the content and 154 (61%) on the accessibility. Age was significantly associated with knowledge whereas both age and physical functioning were significantly associated with information need. Seventy-nine percent of the patients mentioned written information, 21% the Internet and 12% personal contact with a professional as a preferred method of information delivery. CONCLUSION Many RA patients reported a lack of knowledge or information need concerning the contents and accessibility of regional health care services. PRACTICE IMPLICATIONS Active strategies to provide practical information about health care services are needed for RA patients.

The risk for depression in patients with ankylosing spondylitis: a population-based cohort study

IntroductionDepression is frequent in ankylosing spondylitis (AS) patients. However, epidemiological data about the potential increase in risk are lacking. This study compares the rate of doctor-diagnosed depression in a well defined cohort of AS patients to the general population seeking care.MethodsThe Skåne Healthcare Register comprises healthcare data of each resident in Region Skåne, Sweden (population 1.2 million), including ICD-10 diagnoses. Using physician coded consultation data from years 1999 to 2011, we calculated depression consultation rates for all AS patients. We obtained standardized depression-rate ratios by dividing the observed depression rate in AS patients by the expected rate based on the corresponding age- and sex-specific rates of depression in the general population seeking care. A ratio >1 equals a higher rate of depression among AS patients.ResultsThe AS cohort consisted of 1738 subjects (65% men) with a mean age of 54 years. The reference population consisted of 967,012 subjects. During the 13-year observation period 10% (n = 172) of the AS cohort had a doctor-diagnosed depression compared to 6% (n = 105) to be expected. The standardized estimate of depression-rate ratio was 1.81 (95% confidence interval 1.44 to 2.24) in women men and 1.49 (1.20 to 1.89) in men.ConclusionsThe rate of doctor-diagnosed depression is increased about 80% in female and 50% in male AS patients. Future challenges are to timely identify and treat the AS patients who suffer from depression.

Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries

Objectives To validate the educational needs assessment tool (ENAT) as a generic tool for assessing the educational needs of patients with rheumatic diseases in European Countries. Methods A convenience sample of patients from seven European countries was included comprising the following diagnostic groups: ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematosus, osteoarthritis (OA) and fibromyalgia syndrome. Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group. Results The sample comprised 3015 patients; the majority, 1996 (66.2%), were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item–trait interaction χ2 p<0.05). After correction for local dependency (grouping the items into seven domains and analysing them as ‘testlets’), fit to the model was satisfied (item–trait interaction χ2 p>0.18) in all pooled disease group datasets except OA (χ2=99.91; p=0.002). The internal consistency in each group was high (Person Separation Index above 0.90). There was no significant DIF by person characteristics. Cross-cultural DIF was found in some items, which required adjustments. Subsequently, interval-level scales were calibrated to enable transformation of ENAT scores when required. Conclusions The adapted ENAT is a valid tool with high internal consistency providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible.

Determinants of participation of youth with acquired brain injury: A systematic review

Abstract Objectives: Participation is considerably restricted in children and adolescents with acquired brain injury (ABI) as compared to their healthy peers. This systematic review aims to identify which factors are associated with participation in children and adolescents with ABI. Methods: A systematic search in Medline and various other electronic databases from January 2001–November 2014 was performed. All clinical studies describing determinants of participation at least 1 year after the diagnosis of ABI by means of one or more pre-defined instruments in patients up to 18 years of age were included. Extracted data included study characteristics, patient characteristics, participation outcome and determinants of participation (categorized into: health conditions (including characteristics of ABI), body functions and structures, activities, personal factors and environmental factors). The methodological quality of the studies was evaluated based on three quality aspects (selection, information and statistical analysis bias) and scored as low, moderate or high. Results: Eight studies using an explicit participation outcome measure were selected after review, including a total of 1863 patients, with a follow-up ranging from 1 up to 288 months. Three studies included patients with a traumatic or a non-traumatic brain injury (TBI or NTBI) and five studies with only TBI patients. Factors consistently found to be associated with more participation restrictions were: greater severity of ABI, impaired motor, cognitive, behavioural and/or sensory functioning, limited accessibility of the physical environmentand worse family functioning. Fewer participation problems were associated with a supportive/nurturing parenting style, higher household income, acceptance and support in the community and availability of special programmes. The overall methodological quality of the included studies was high in two and moderate in six studies. Conclusion: This systematic review shows that only a few, moderate quality, studies on the determinants of participation after paediatric ABI using recommended explicit measurement instruments are available. Various components of the ICF model: health condition, body functions and structures and environmental factors were consistently found to be associated with participation. More methodologically sound studies, using the recommended explicit outcome measures, a standardized set of potential determinants and long-term follow-up are suggested to increase the knowledge on participation in children and youth with ABI.

The effects of an 8-week computer-based brain training programme on cognitive functioning, QoL and self-efficacy after stroke

ABSTRACT Cognitive impairment after stroke has a direct impact on daily functioning and quality of life (QoL) of patients and is associated with higher mortality and healthcare costs. The aim of this study was to determine the effect of a computer-based brain training programme on cognitive functioning, QoL and self-efficacy compared to a control condition in stroke patients. Stroke patients with self-perceived cognitive impairment were randomly allocated to the intervention or control group. The intervention consisted of an 8-week brain training programme (Lumosity Inc.®). The control group received general information about the brain weekly. Assessments consisted of a set of neuropsychological tests and questionnaires. In addition, adherence with trained computer tasks was recorded. No effect of the training was found on cognitive functioning, QoL or self-efficacy when compared to the control condition, except for very limited effects on working memory and speed. This study found very limited effects on neuropsychological tests that were closely related to trained computer tasks, but no transfers to other tests or self-perceived cognitive failures, QoL or self-efficacy. These findings warrant the need for further research into the value of computer-based brain training to improve cognitive functioning in the chronic phase after stroke.

Evaluation of a website providing information on regional health care services for patients with rheumatoid arthritis: an observational study

Studies on the effectiveness of information provision for patients with arthritis through the Internet are scarce. This study aimed to describe rheumatoid arthritis (RA) patients’ knowledge and information needs before and after launching a website providing information on regional health care services for patients with rheumatic conditions. The intervention consisted of a weekly updated website comprising practical information on regional health care services for patients with arthritis. In addition, patients were offered information leaflets and an information meeting. Before (T1) and 24 months after (T2) the website was launched, a random sample of 400 RA patients filled in a questionnaire regarding knowledge and information need (scores 0–18) about accessibility and contents of 18 regional health care services. Two hundred and fifty-one patients returned the questionnaire (response rate 63%) at T1 and 200 patients (50%) at T2, respectively, with 160 paired observations (112 females (70%), mean age 60.4 years (SD 9.9)). The total score for insufficient knowledge about contents decreased from 9.3 (SD 4.9) to 8.5 (SD 4.8; p = 0.03) and for accessibility from 8.6 (SD 4.7) to 8.4 (SD 4.9; p = 0.59). Total score for information need about contents decreased from 4.2 (SD 4.5) to 1.9 (SD 2.9; p < 0.01) and for accessibility from 3.6 (SD 4.5) to 1.4 (SD 2.4; p < 0.01) (paired t-tests).After the administration of a website comprising practical health care information, RA patients’ information need and to a lesser extent their perception of having insufficient knowledge on relevant regional health care services decreased significantly. The results of this descriptive study suggest that the use of the Internet to inform patients may be effective, although controlled studies are required to evaluate and optimize web-delivered information.

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 (β 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.

Which patients improve the most from arthritis rehabilitation?: Results from patients with inflammatory arthritis in northern Europe, the STAR-ETIC collaboration

OBJECTIVE To study health-related quality of life (HRQoL) in arthritis rehabilitation performed by multidisciplinary teams in patients with chronic inflammatory arthritis. Predictors of change in health-related quality of life and the proportion of patients with clinical improvement were investigated. DESIGN Multicentre prospective observational study in 4 European countries. METHODS HRQoL was measured with the European Quality 5 Dimensions (EQ-5D) and the Short Form 36 Health Survey (SF-36) in 731 patients who underwent multidisciplinary rehabilitation. Potential predictors were physical functioning (Health Assessment Questionnaire (HAQ)), self-efficacy (Arthritis Self Efficacy Scale (ASES)), psychological health (Hopkins Symptom Check List (HSCL-25)), pain/fatigue (numeric rating scales (NRS)), age, sex, diagnosis, comorbidity, education, clinical setting and change of medication during rehabilitation. Analysis of covariance (ANCOVA) was used to assess for potential predictors and interactions. The minimal important differences for HRQoL were analysed. RESULTS Reporting worse function (b 0.05, p = 0.01), less psychological well-being (b 0.09, p = 0.000), and experiencing more pain (b 0.03, p = 0.000) or fatigue (b 0.02, p = 0.000) at admission predicted improved HRQoL. Change in medication during rehabilitation (b 0.08, p = 0.013) was associated with greater improvement in HRQoL. These EQ-5D findings were supported by SF-36 findings. Positive minimal important differences were noted in 46% (EQ-5D) and 23-47% (SF-36 subscales) of the patients. CONCLUSION Patients with more severe symptoms experienced the largest gain in HRQoL post-intervention. The results of this study are of value for selecting the right patients for rheumatological team rehabilitation.

WhAT's IN ThE BlACk BOx OF ARThRITIs REhABIlITATION? A COMpARIsON OF REhABIlITATION pRACTICE FOR pATIENTs WITh INFlAMMATORy ARThRITIs IN NORThERN EUROpE

BACKGROUND In evaluating complex interventions, it is a challenge for researchers to provide transparent reporting of the intervention content with sufficient detail and clarity such that effects can be compared across studies or countries. OBJECTIVE To describe and compare the content of current rehabilitation for patients with inflammatory arthritis across 4 northern European countries. PATIENTS AND METHODS A total of 731 patients with inflammatory rheumatic diseases participated in a multicentre, longitudinal observational study carried out in Sweden, The Netherlands, Denmark and Norway. Data on context, structure and process were reported by patients and teams at the different participating study sites according to the Scandinavian Team Arthritis Register-European Team Intiative for Care Research (STAR-ETIC) framework. RESULTS Although large similarities were found in the context, there were important differences between the Netherlands and the Scandinavian countries. Regarding structure, there were considerable differences in the length of the rehabilitation period across settings and countries. The most evident differences concerned process variables, especially the type and dosage of individual treatment modalities. CONCLUSION The variation in important aspects of arthritis rehabilitation found in the present study underline the need for transparent and standardized description of these variables when comparing effects across settings and countries. A standardized description of current practice can be achieved by the STAR-ETIC framework.