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author:("vlietland, T")
1.  Most Important Factors for the Implementation of Shared Decision Making in Sciatica Care: Ranking among Professionals and Patients 
PLoS ONE  2014;9(4):e94176.
Due to the increasing specialization of medical professionals, patients are treated by multiple disciplines. To ensure that delivered care is patient-centered, it is crucial that professionals and the patient together decide on treatment (shared decision making (SDM)). However, it is not known how SDM should be integrated in multidisciplinary practice. This study determines the most important factors for SDM implementation in sciatica care, as it is known that a prior inventory of factors is crucial to develop a successful implementation strategy.
246 professionals (general practitioners, physical therapists, neurologists, neurosurgeons, orthopedic surgeons) (30% response) and 155 patients (96% response) responded to an internet-based survey. Respondents ranked barriers and facilitators identified in previous interviews, on their importance using Maximum Difference Scaling. Feeding back the personal top 5 most important factors, each respondent indicated whether these factors were barriers or facilitators. Hierarchical Bayes estimation was used to estimate the relative importance (RI) of each factor.
Professionals assigned the highest importance to: quality of professional-patient relationship (RI 4.87; CI 4.75–4.99); importance of quick recovery of patient (RI 4.83; CI 4.69–4.97); and knowledge about treatment options (RI 6.64; CI 4.53–4.74), which were reported as barrier and facilitator. Professionals working in primary care had a different ranking than those working in hospital care. Patients assigned the highest importance to: correct diagnosis by professionals (barrier, RI 8.19; CI 7.99–8.38); information provision about treatment options and potential harm and benefits (RI 7.87; CI 7.65–8.08); and explanation of the professional about the care trajectory (RI 7.16; CI 6.94–7.38), which were reported as barrier and facilitator.
Knowledge, information provision and a good relationship are the most important conditions for SDM perceived by both patients and professionals. These conditions are not restricted to one specific disease or health care system, because they are mostly professional or patient dependent and require healthcare professional training.
PMCID: PMC3978036  PMID: 24710328
2.  Designing a strategy to implement optimal conservative treatments in patients with knee or hip osteoarthritis in orthopedic practice: a study protocol of the BART-OP study 
National and international evidence-based guidelines for hip and knee osteoarthritis recommend to start with (a combination of) conservative treatments, followed by surgical intervention if a patient does not respond sufficiently to conservative treatment options. Despite these recommendations, there are strong indications that conservative treatments are not optimally used in orthopedic practice. Our study aims to quantify the use of conservative treatments in Dutch orthopedic practice and to explore the barriers and facilitators for the use of conservative treatments that should be taken into account in a strategy to improve the embedding of conservative treatments in hip and knee osteoarthritis in orthopedic practice.
This study consists of three phases. First, current use of conservative treatments in patients with hip and knee osteoarthritis will be explored using an internet-based survey among at least 100 patients to identify the underused conservative treatments. Second, barriers and facilitators for the use of conservative treatments in orthopedic practice will be identified using semi-structured interviews among 10 orthopedic surgeons and 5 patients. The interviews will be followed by an internet-based survey among approximately 450 orthopedic surgeons and at least 100 patients in which the identified barriers and facilitators will be ranked by importance. Finally, an implementation strategy will be developed based on the results of the previous phases using intervention mapping.
The developed strategy is likely to result in an optimal and standardized use of conservative treatment options in hip and knee osteoarthritis in orthopedic practice, because it is focused on identified barriers and facilitators. In addition, the results of this study can be used as an example for optimizing the use of conservative care in other patient groups. In a subsequent study, the developed implementation strategy will be assessed on its effectiveness, feasibility and costs.
PMCID: PMC3931284  PMID: 24548844
Osteoarthritis; Hip; Knee; Conservative treatment; Implementation strategy; Barriers and facilitators
3.  Barriers and facilitators to implement shared decision making in multidisciplinary sciatica care: a qualitative study 
The Dutch multidisciplinary sciatica guideline recommends that the team of professionals involved in sciatica care and the patient together decide on surgical or prolonged conservative treatment (shared decision making [SDM]). Despite this recommendation, SDM is not yet integrated in sciatica care. Existing literature concerning barriers and facilitators to SDM implementation mainly focuses on one discipline only, whereas multidisciplinary care may involve other barriers and facilitators, or make these more complex for both professionals and patients. Therefore, this qualitative study aims to identify barriers and facilitators perceived by patients and professionals for SDM implementation in multidisciplinary sciatica care.
We conducted 40 semi-structured interviews with professionals involved in sciatica care (general practitioners, physical therapists, neurologists, neurosurgeons, and orthopedic surgeons) and three focus groups among patients (six to eight per group). The interviews and focus groups were audiotaped and transcribed in full. Reported barriers and facilitators were classified according to the framework of Grol and Wensing. The software package Atlas.ti 7.0 was used for analysis.
Professionals reported 53 barriers and 5 facilitators, and patients 35 barriers and 18 facilitators for SDM in sciatica care. Professionals perceived most barriers at the level of the organizational context, and facilitators at the level of the individual professional. Patients reported most barriers and facilitators at the level of the individual professional. Several barriers and facilitators correspond with barriers and facilitators found in the literature (e.g., lack of time, motivation) but also new barriers and facilitators were identified. Many of these new barriers mentioned by both professionals and patients were related to the multidisciplinary setting, such as lack of visibility, lack of trust in expertise of other disciplines, and lack of communication between disciplines.
This study identified barriers and facilitators for SDM in the multidisciplinary sciatica setting, by both professionals and patients. It is clear that more barriers than facilitators are perceived for implementation of SDM in sciatica care. Newly identified barriers and facilitators are related to the multidisciplinary care setting. Therefore, an effective implementation strategy of SDM in a multidisciplinary setting such as in sciatica care should focus on these barriers and facilitators.
PMCID: PMC3765956  PMID: 23968140
Sciatica; Lumbar radicular syndrome; Implementation strategy; Shared decision making; Barriers and facilitators; Multidisciplinary; Patients; Professionals; Providers
4.  Frequent use of blood-saving measures in elective orthopaedic surgery: a 2012 Dutch blood management survey 
Blood loss in hip and knee arthroplasties may necessitate allogeneic blood transfusions. Different blood-saving measures (BSMs) were introduced to reduce these transfusions. Purpose of the present study was to assess the frequency of BSM use, stratified by type and hospital setting of orthopaedic departments in the Netherlands.
An internet-based questionnaire was sent to all heads of orthopaedic departments of Dutch hospitals and private clinics (n = 99). Questions were asked on how often BSMs were used, reported on a 5-point Likert scale (never, almost never, regularly, almost always, always). In addition there were questions about discontinuation of anticoagulants preoperatively, the number of annually performed arthroplasties (size) and hospital setting.
The survey was completed by 81 (82%) departments. BSMs used frequently (regularly, almost always, always) were erythropoietine (EPO), with 55 (68%) departments being frequent users; acute normovolemic hemodilution, used frequently in 26 (32%) departments; cell saver in 25 (31%) and postoperative drainage and re-infusion in 56 (69%) departments. When compared by size, frequent EPO use was more common in large departments (with 22 (88%) large departments being frequent users versus 13 (63%) small departments and 16 (55%) intermediate departments, p = 0.03). No differences by size or type were observed for other BSMs.
Compared with previous survey’s there is a tremendous increase in use of BSMs. EPO and autologous blood salvage techniques are the most often used modalities. Costs might be saved if use of non-cost-effective BSMs is stopped.
PMCID: PMC3750265  PMID: 23915322
Blood management; Orthopedics; Arthroplasty; Survey
5.  Developing core sets for patients with obstetric brachial plexus injury based on the International Classification of Functioning, Disability and Health 
Bone & Joint Research  2013;2(6):116-121.
Symptoms of obstetric brachial plexus injury (OBPI) vary widely over the course of time and from individual to individual and can include various degrees of denervation, muscle weakness, contractures, bone deformities and functional limitations. To date, no universally accepted overall framework is available to assess the outcome of patients with OBPI. The objective of this paper is to outline the proposed process for the development of International Classification of Functioning, Disability and Health (ICF) Core Sets for patients with an OBPI.
The first step is to conduct four preparatory studies to identify ICF categories important for OBPI: a) a systematic literature review to identify outcome measures, b) a qualitative study using focus groups, c) an expert survey and d) a cross-sectional, multicentre study. A first version of ICF Core Sets will be defined at a consensus conference, which will integrate the evidence from the preparatory studies. In a second step, field-testing among patients will validate this first version of Core Sets for OBPI.
The proposed method to develop ICF Core Sets for OBPI yields a practical tool for multiple purposes: for clinicians to systematically assess and evaluate the individual’s functioning, for researchers to design and compare studies, and for patients to get more insight into their health problems and their management.
PMCID: PMC3693181  PMID: 23836476
Obstetric brachial plexus injury; International Classification of Functioning; Disability and Health; ICF; Paediatrics; Core sets
6.  Patients with Severe Radiographic Osteoarthritis Have a Better Prognosis in Physical Functioning after Hip and Knee Replacement: A Cohort-Study 
PLoS ONE  2013;8(4):e59500.
Although Total Hip and Knee Replacements (THR/TKR) improve Health-Related Quality of Life (HRQoL) at the group level, up to 30% of patients are dissatisfied after surgery due to unfulfilled expectations. We aimed to assess whether the pre-operative radiographic severity of osteoarthritis (OA) is related to the improvement in HRQoL after THR or TKR, both at the population and individual level.
In this multi-center observational cohort study, HRQoL of OA patients requiring THR or TKR was measured 2 weeks before surgery and at 2–5 years follow-up, using the Short-Form 36 (SF36). Additionally, we measured patient satisfaction on a 11-point Numeric Rating Scale (NRSS). The radiographic severity of OA was classified according to Kellgren and Lawrence (KL) by an independent experienced musculoskeletal radiologist, blinded for the outcome. We compared the mean improvement and probability of a relevant improvement (defined as a patients change score≥Minimal Clinically Important Difference) between patients with mild OA (KL Grade 0–2) and severe OA (KL Grade 3+4), whilst adjusting for confounders.
Severe OA patients improved more and had a higher probability of a relevant improvement in physical functioning after both THR and TKR. For TKR patients with severe OA, larger improvements were found in General Health, Vitality and the Physical Component Summary Scale. The mean NRSS was also higher in severe OA TKR patients.
Patients with severe OA have a better prognosis after THR and TKR than patients with mild OA. These findings might help to prevent dissatisfaction after THR and TKR by means of patient selection or expectation management.
PMCID: PMC3616074  PMID: 23573200
7.  Agreement of general practitioners with the guideline-based stepped-care strategy for patients with osteoarthritis of the hip or knee: a cross-sectional study 
BMC Family Practice  2013;14:33.
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.
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.
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.
In general, GPs support the recommendations in the SCS. Therefore, we expect that their attitudes will not impede a successful implementation in general practice. Our results provide several starting points on which to focus implementation activities for specific SCS recommendations; those related to the prescription of pain medication and the use of X-rays. We could not identify factors that contribute substantially to GPs’ attitudes regarding the SCS recommendations regarding the sequence for care.
PMCID: PMC3602050  PMID: 23497253
8.  A comparative study on the prevalence of musculoskeletal complaints among musicians and non-musicians 
Research comparing the frequency of musculoskeletal complaints between musicians and non-musicians is scarce. The aim of this study was to compare the prevalence of musculoskeletal complaints between musicians and non-musicians.
A cross-sectional study in 3215 students from three music academies (n = 345) and one medical school (n = 2870) in The Netherlands was performed, using an electronic questionnaire. The questionnaire included socio-demographic characteristics, use of music instruments and the occurrence of musculoskeletal complaints in six body regions. Questions were related to musculoskeletal complaints over the last twelve months and at the time of the questionnaire. Chi-square, t-tests and Kruskal-Wallis tests were used for comparison between the two groups. The association between musculoskeletal complaints and possible predictors was analyzed using a logistic and Poisson regression.
Eighty-seven music academy students and 503 medical students returned the questionnaire, of which respectively eighty-three and 494 were included in the study. Seventy-four music academy students (89.2%) reported one or more musculoskeletal complaints during the last twelve months, compared to 384 (77.9%) medical students (p = 0.019). Moreover 52 music academy students (62.7%) and 211 medical students (42.7%) reported current musculoskeletal complaints (p = 0.001). The Odds ratio (OR) for the development of musculoskeletal complaints during the last twelve months in music academy students versus medical students is 2.33 (95% CI 1.61–3.05, p = 0.022). The OR at the time of the questionnaire is 2.25 (95% CI 1.77–2.73, p = 0.001). The total number of complaints have been modeled by employing a Poisson regression; the results show that non-musicians have on average less complaints than musicians (p = 0.01). The adjusted means are 2.90 (95% CI 2.18–3.63) and 1.83 (95% CI 1.63–2.04) respectively for musicians and non-musicians. Regarding the localization of complaints, music academy students reported more complaints concerning the right hand, wrists, left elbow, shoulders, neck, jaw and mouth in contrast to medical students.
Musculoskeletal complaints are significantly more common among musicians compared to non-musicians, mainly due to a higher number of upper extremity complaints.
PMCID: PMC3554565  PMID: 23289849
Musculoskeletal diseases; Epidemiology; Musicians; Occupational diseases; Prevalence; Upper extremity; Cumulative trauma disorders
9.  Designing a strategy to implement cost-effective blood transfusion management in elective hip and knee arthroplasties: A study protocol 
Total hip and knee arthroplasties are two of the most commonly performed procedures in orthopedic surgery. Different blood-saving measures (BSMs) are used to reduce the often-needed allogenic blood transfusions in these procedures. A recent large randomized controlled trial showed it is not cost effective to use the BSMs of erythropoietin and perioperative autologous blood salvage in elective primary hip and knee arthroplasties. Despite dissemination of these study results, medical professionals keep using these BSMs. To actually change practice, an implementation strategy is needed that is based on a good understanding of target groups and settings and the psychological constructs that predict behavior of medical professionals. However, detailed insight into these issuses is lacking. Therefore, this study aims to explore which groups of professionals should be targeted at which settings, as well as relevant barriers and facilitators that should be taken into acount in the strategy to implement evidence-based, cost-effective blood transfusion management and to de-implement BSMs.
The study consists of three phases. First, a questionnaire survey among all Dutch orthopedic hospital departments and independent treatment centers (n = 99) will be conducted to analyze current blood management practice. Second, semistructured interviews will be held among 10 orthopedic surgeons and 10 anesthesiologists to identify barriers and facilitators that are relevant for the uptake of cost-effective blood transfusion management. Interview questions will be based on the Theoretical Domains Interview framework. The interviews will be followed by a questionnaire survey among 800 medical professionals in orthopedics and anesthesiology (400 professionals per discipline) in which the identified barriers and facilitators will be ranked by frequency and importance. Finally, an implementation strategy will be developed based on the results from the previous phases, using principles of intervention mapping and an expert panel.
The developed strategy for cost-effective blood transfusion management by de-implementing BSMs is likely to reduce costs for elective hip and knee arthroplasties. In addition, this study will lead to generalized knowledge regarding relevant factors for the de-implementation of non-cost-effective interventions and insight in the differences between implementation and de-implementation strategies.
PMCID: PMC3443067  PMID: 22747693
Hip/Knee arthroplasties; Blood transfusion; Blood-saving measures; Problem analysis; Barriers and facilitators; Implementation strategy
10.  Designing an implementation strategy to improve interprofessional shared decision making in sciatica: study protocol of the DISC study 
Sciatica is a common condition worldwide that is characterized by radiating leg pain and regularly caused by a herniated disc with nerve root compression. Sciatica patients with persisting leg pain after six to eight weeks were found to have similar clinical outcomes and associated costs after prolonged conservative treatment or surgery at one year follow-up. Guidelines recommend that the team of professionals involved in sciatica care and patients jointly decide about treatment options, so-called interprofessional shared decision making (SDM). However, there are strong indications that SDM for sciatica patients is not integrated in daily practice. We designed a study aiming to explore the barriers and facilitators associated with the everyday embedding of SDM for sciatica patients. All related relevant professionals and patients are involved to develop a tailored strategy to implement SDM for sciatica patients.
The study consists of two phases: identification of barriers and facilitators and development of an implementation strategy. First, barriers and facilitators are explored using semi-structured interviews among eight professionals of each (para)medical discipline involved in sciatica care (general practitioners, physical therapists, neurologists, neurosurgeons, and orthopedic surgeons). In addition, three focus groups will be conducted among patients. Second, the identified barriers and facilitators will be ranked using a questionnaire among a representative Dutch sample of 200 GPs, 200 physical therapists, 200 neurologists, all 124 neurosurgeons, 200 orthopedic surgeons, and 100 patients. A tailored team-based implementation strategy will be developed based on the results of the first phase using the principles of intervention mapping and an expert panel.
Little is known about effective strategies to increase the uptake of SDM. Most implementation strategies only target a single discipline, whereas multiple disciplines are involved in SDM among sciatica patients. The results of this study can be used as an example for implementing SDM in other patient groups receiving multidisciplinary complex care (e.g., elderly) and can be generalized to other countries with similar context, thereby contributing to a worldwide increase of SDM in preference sensitive choices.
PMCID: PMC3465186  PMID: 22704251
Sciatica; Lumbar radicular syndrome; Implementation strategy; Shared decision making; Barriers and facilitators; Decision aid
11.  Evaluation of a website providing information on regional health care services for patients with rheumatoid arthritis: an observational study 
Clinical Rheumatology  2011;31(4):637-645.
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.
PMCID: PMC3314822  PMID: 22160606
Consumer health information; Health care services; Health services accessibility; Information need; Internet; Rheumatoid arthritis
12.  Role of rheumatology clinical nurse specialists in optimizing management of hand osteoarthritis during daily practice in secondary care: an observational study 
The purpose of this study was to describe the effectiveness of a single one-hour consultation by a clinical nurse specialist in patients with hand osteoarthritis during daily rheumatology practice in secondary care.
Consecutive patients diagnosed by rheumatologists to have primary hand osteoarthritis and referred to the clinical nurse specialist were eligible for entry into this study. The standardized 1-hour consultation consisted of assessments and education on hand osteoarthritis by a clinical nurse specialist. Before and 3 months after the consultation, assessments were done to evaluate treatment (use of assistive devices, acetaminophen), health-related quality of life (physical component summary [PCS] score of Short-Form 36), and hand pain/function (Australian/ Canadian Osteoarthritis Hand Index [AUSCAN]). Paired t-tests and McNemar tests were used to analyze differences between baseline and follow-up. Satisfaction was measured after consultation at follow-up using a multidimensional questionnaire comprising 13 items (rated on a four-point scale).
A total of 439 patients were referred, with follow-up data available for 195 patients, comprising 177 (87%) females, and of mean age 59 ± 9.0 years. After consultation, the proportions of patients using assistive devices and/or acetaminophen increased significantly from 30% to 39% and from 35% to 49%, respectively. PCS improved significantly (P = 0.03) whereas AUSCAN hand pain/function showed no significant differences compared with baseline (P values 0.52 and 0.92, respectively). The proportions of patients reporting to be satisfied or fully satisfied ranged from 78% to 99% per item.
A single, comprehensive, standardized assessment and education by a clinical nurse specialist improved the physical dimension of health-related quality of life in hand osteoarthritis. Most patients were satisfied with the consultation. Further controlled trials are needed to determine the added value of the clinical nurse specialist in care for hand osteoarthritis.
PMCID: PMC3215348  PMID: 22135497
hand osteoarthritis; nursing; quality of life; satisfaction
13.  Promoting physical activity in patients with rheumatoid arthritis: rheumatologists’ and health professionals’ practice and educational needs 
Clinical Rheumatology  2011;30(12):1603-1609.
Despite the proven health benefits, patients with rheumatoid arthritis (RA) are found to be less physically active than their healthy peers. The aim of this study was to examine to what extent and how physical activity, defined as any bodily movement resulting in energy expenditure, is currently promoted by health care providers in patients with RA and how they perceive their competencies and educational needs. For this cross-sectional study, Dutch rheumatologists, rheumatology clinical nurse specialists, and expert physical therapists were sent a postal survey including four domains: attitudes towards physical activity in RA, advices given to patients with RA, and perceived competencies and educational needs. A total of 126 rheumatologists (50%), 132 clinical nurse specialists (56%), and 112 physical therapists (53%) returned the questionnaire. More than 90% agreed that physical activity is an important health goal for RA patients and regularly advised their patients to engage in physical activity. Public health recommendations for moderate-intensity physical activity were found attainable in RA patients by 66%, 74%, and 65% and were by used by 19%, 41%, and 49% of them, respectively. On average, respondents rated their competency to promote physical activity as low to medium, and 54%, 85%, and 72% of the respondents expressed a need for additional education regarding this topic. Rheumatologists, nurses, and physical therapists considered regular physical activity to be an important health goal for RA patients. The majority of them commonly gave advice on physical activity but felt not sufficiently competent and indicated a need for additional education.
PMCID: PMC3218269  PMID: 21912880
Health professionals; Health promotion; Physical activity; Rheumatoid arthritis; Rheumatologists
14.  Cross-cultural validation of the Educational Needs Assessment Tool in RA in 7 European countries 
The Educational Needs Assessment Tool (the ENAT) is a 39-item patient questionnaire originally developed in the UK to assess educational needs of patients with rheumatoid arthritis (RA). The objective of this study was to assess the cross-cultural validity of the ENAT in 7 European countries.
The ENAT was translated into Dutch, Finnish, Norwegian, Portuguese, Spanish and Swedish versions by using Beaton's cross-cultural adaptation process, and was completed by a convenience sample of patients with RA in each country. The generated country-specific data were assessed for construct validity and were then pooled and assessed for cross-cultural invariance using Rasch analysis.
Individual country-specific analysis showed adequate fit to the Rasch model after adjustment for local dependency within domains. When data from the different countries were pooled, the 39 items deviated significantly from Rasch model's expectations (X2 = 977.055, DF = 351, p = 0.000, PSI = 0.976). Again, most items within domains were found to be locally dependent, significantly affecting the fit. Consequently each domain was treated as a unit (i.e. testlet) and the ENAT was re-analysed as a seven-testlet scale resulting into a good fit to the Rasch model (X2 = 71.909; DF = 63; p = 0.207, PSI = 0.951). A test of strict unidimensionality confirmed that all domains contributed to measuring a single construct. Cross-cultural non-invariance was discounted by splitting domains for DIF maintaining an excellent fit to the Rasch model. This allowed calibration of the ENAT into an interval scale.
The ENAT is a simple tool, which is a valid measure of educational needs of people with RA. Adjustment for cross-cultural non-invariance is available if data from the 7 European countries are to be pooled or compared.
PMCID: PMC3126763  PMID: 21609481
Cross-cultural validation; Outcome research; Patient education; Rasch analysis; Rheumatoid arthritis
15.  Needs and preferences regarding health care delivery as perceived by patients with systemic sclerosis 
Clinical Rheumatology  2011;30(6):815-824.
This study aims to examine the needs and preferences regarding the delivery of health care services and information provision and their determinants in patients with systemic sclerosis (SSc). A questionnaire was sent to 77 SSc outpatients, comprising 27 items on health care needs within the domains physical, psychological, social support, employment/daily activities, or other health problems and 13 items on information needs. Moreover, the patients’ preferences regarding the provision of health care services and information were listed. Additional assessments included sociodemographic characteristics, physical functioning (SSc Health Assessment Questionnaire), and quality of life (SF-36). Sixty-four patients (83%) returned the questionnaire. Twenty-six patients (41%) reported one or more unmet health care needs, with the highest proportions of patients with unmet needs seen in the physical (28%) and psychological (20%) domain. The highest percentages of patients with information needs were observed for medical subjects (20–28%). A lower mental component summary scale score and younger age were associated with the presence of at least one health care need in the psychological domain. Worse physical functioning, a diagnosis of diffuse SSc and having a partner were associated with higher information need score. A yearly, standardized multidisciplinary assessment program was most frequently mentioned as a preferred, but not yet existing health care model (59%) and the rheumatologist as a preferred source of information supply (75%). Unmet health care and information needs are common among SSc patients. To improve SSc health care, more attention should be paid to health care services for specific physical and psychological problems and medical information supply by the rheumatologist. In addition, the development of new models of care, such as a yearly, standardized multidisciplinary diagnostic program seems warranted.
PMCID: PMC3101347  PMID: 21243390
Health care; Systemic sclerosis; Unmet needs
16.  Effect of adaptive abilities on utilities, direct or mediated by mental health? 
In cost-utility analyses gain in health can be measured using health state utilities. Health state utilities can be elicited from members of the public or from patients. Utilities given by patients tend to be higher than utilities given by members of the public. This difference is often suggested to be explained by adaptation, but this has not yet been investigated in patients. Here, we investigate if, besides health related quality of life (HRQL), persons' ability to adapt can explain health state utilities. Both the direct effect of persons' adaptive abilities on health state utilities and the indirect effect, where HRQL mediates the effect of ability to adapt, are examined.
In total 125 patients with Rheumatoid Arthritis were interviewed. Participants gave valuations of their own health on a visual analogue scale (VAS) and time trade-off (TTO). To estimate persons' ability to adapt, patients filled in questionnaires measuring Self-esteem, Mastery, and Optimism. Finally they completed the SF-36 measuring HRQL. Regression analyses were used to investigate the direct and mediated effect of ability to adapt on health state utilities.
Persons' ability to adapt did not add considerably to the explanation of health state utilities above HRQL. In the TTO no additional variance was explained by adaptive abilities (Δ R2 = .00, β = .02), in the VAS a minor proportion of the variance was explained by adaptive abilities (Δ R2 = .05, β = .33). The effect of adaptation on health state utilities seems to be mediated by the mental health domain of quality of life.
Patients with stronger adaptive abilities, based on their optimism, mastery and self-esteem, may more easily enhance their mental health after being diagnosed with a chronic illness, which leads to higher health state utilities.
PMCID: PMC2993679  PMID: 21073693
17.  Consensus Dutch Health Assessment Questionnaire 
Annals of the Rheumatic Diseases  2007;66(1):132-133.
PMCID: PMC1798401  PMID: 17178759
18.  Development of a framework for reporting health service models for managing rheumatoid arthritis 
Clinical Rheumatology  2009;29(2):151-165.
The purpose of this study was to develop a framework for reporting health service models for managing rheumatoid arthritis (RA). We conducted a search of the health sciences literature for primary studies that described interventions which aimed to improve the implementation of health services in adults with RA. Thereafter, a nominal group consensus process was used to synthesize the evidence for the development of the reporting framework. Of the 2,033 citations screened, 68 primary studies were included which described 93 health service models for RA. The origin and meaning of the labels given to these health service delivery models varied widely and, in general, the reporting of their components lacked detail or was absent. The six dimensions underlying the framework for reporting RA health service delivery models are: (1) Why was it founded? (2) Who was involved? (3) What were the roles of those participating? (4) When were the services provided? (5) Where were the services provided/received? (6) How were the services/interventions accessed and implemented, how long was the intervention, how did individuals involved communicate, and how was the model supported/sustained? The proposed framework has the potential to facilitate knowledge exchange among clinicians, researchers, and decision makers in the area of health service delivery. Future work includes the validation of the framework with national and international stakeholders such as clinicians, health care administrators, and health services researchers.
PMCID: PMC2797417  PMID: 19865842
Classification; Health services; Information dissemination; Models of care; Reporting framework; Rheumatoid arthritis
19.  Measuring educational needs among patients with rheumatoid arthritis using the Dutch version of the Educational Needs Assessment Tool (DENAT) 
Clinical Rheumatology  2009;28(9):1073-1077.
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.
PMCID: PMC2721136  PMID: 19449083
Allied health professionals; Consumer health information; Health knowledge; Needs assessment; Patient education; Rheumatoid arthritis
20.  Responsiveness of the shoulder function assessment scale in patients with rheumatoid arthritis 
Annals of the Rheumatic Diseases  2006;65(2):239-241.
To investigate the responsiveness of the Shoulder Function Assessment scale (SFA) in patients with rheumatoid arthritis (RA).
In 35 patients with RA receiving a (peri‐)articular injection because of local shoulder complaints the SFA, impact of shoulder function on activities of daily living, active shoulder range of motion (ROM), the 28 joint count Disease Activity Score (DAS28), and the Health Assessment Questionnaire (HAQ) were measured before and 4–6 weeks after treatment. Responsiveness was determined using the standardised response mean (SRM), effect size (ES), and responsiveness ratio (RR).
Overall, significant improvement was seen according to the SFA (mean change 10.9 (95% confidence interval 6.5 to 15.3)), active shoulder ROM (except external rotation), and the impact of shoulder function on daily activities. In addition, the DAS28 and HAQ scores improved significantly. The responsiveness of the SFA was excellent, with the SRM, ES, and RR being −0.86, −1.16, and 1.28, respectively.
In addition to its good validity and reliability, the SFA proved to have a high sensitivity to clinical changes in patients with RA who received local treatment for shoulder complaints.
PMCID: PMC1798022  PMID: 16410527
assessment; function; questionnaire; shoulders
21.  Purpose in life in patients with rheumatoid arthritis 
Clinical Rheumatology  2008;27(7):899-908.
To evaluate the role of purpose in life among people with rheumatoid arthritis (RA), a questionnaire comprising the Purpose in Life test (PIL) and the purpose in life dimension of the Psychological Well-Being test (PWB-pil) was sent to a random sample of 300 patients with RA. Additional questions comprised sociodemographic and disease characteristics, physical, mental and social functioning, coping (Coping with rheumatic stressors questionnaire), and quality of life (RAND-36). Associations between sociodemographic and disease characteristics, physical, mental and social functioning, and coping on the one side and the two measures of purpose in life on the other side and associations between the two purpose of life measures and physical and mental dimensions of quality of life were assessed by means of univariate and multivariate regression analyses. The response rate was 156 of 300 (52%). The median PIL and PWB-pil scores were 103 (range 63–131) and 82 (41–110), respectively. A lower age, a better mental health status, and an optimistic coping style were significantly associated with both higher PIL and PWB-pil scores, whereas more participation in leisure and/or social activities was associated with a higher PIL score. It was found that the PIL and PWB-pil contributed independently and significantly to the mental component summary scale of the RAND-36. In RA patients, lower age, a better mental health status, an optimistic coping style, and participation in leisure and/or social activities were significantly associated with more sense of purpose in life. Purpose in life pays a significant and independent contribution to the mental component of quality of life. These findings highlight the significance of the concept of purpose in life in patients with RA.
PMCID: PMC2440946  PMID: 18214572
Adaptation; Arthritis; Health status indicators; Personal satisfaction; Psychological; Quality of life; Rheumatoid; Value of life
22.  Individual quality of life: adaptive conjoint analysis as an alternative for direct weighting? 
Quality of Life Research  2008;17(4):641-649.
In the schedule for the evaluation of individual quality of life (SEIQoL) the weights for five individualized quality of life domains have been derived by judgment analysis and direct weighting (DW). We studied the feasibility and validity of adaptive conjoint analysis (ACA) as an alternative method to derive weights in 27 cancer patients and 20 patients with rheumatoid arthritis. Further, we assessed the convergence between direct weights and weights derived by ACA, and their correlation with global quality-of-life scores. All respondents finished the ACA task, but one in five respondents were upset about the ACA task. Further, the task was vulnerable to judgment ‘errors’, such as inconsistent answers. The agreement between the two weights was low. Both weighted index scores were strongly correlated to the unweighted index score. The relationships between the index score and scores on a visual analogue scale for global individual quality of life and global quality of life were similar whether or not the index score was calculated with DW weights, with ACA weights, or without using weights. We conclude that, because weights did not improve the correlation between the index score and global quality of life scores, it seems sufficient to use the unweighted index score as a measure for global individual quality of life.
PMCID: PMC2358934  PMID: 18398699
Conjoint analysis; Direct weighting; Individual quality of life; SEIQoL; Patients
23.  Sick leave and work disability in patients with early arthritis 
Clinical Rheumatology  2007;27(1):11-19.
We studied the occurrence of sick leave and work disability, the presence of workplace adaptations and the usage of professional guidance related to working problems in patients with early arthritis. Inclusion criteria were arthritis symptoms of less than 2 years duration and a paid job at the time of diagnosis. Assessments were done in connection with an early arthritis clinic (EAC) at entry into the cohort and 12 months thereafter by means of a questionnaire comprising questions on sick leave (absenteeism from work reported to the employer), work disability (receiving a full or partial work disability pension), unemployment, work adaptations and professional guidance related to working problems. Fifty-seven of the 69 participants (83%) had an arthritis symptom duration of <6 months. The number of patients with sick leave due to arthritis in the past 12 months decreased from 28 (41%) at study entry to 18 (26%) after 12 months of follow-up. The number of patients receiving a work disability pension increased from 5 (7%) at study entry to 13 (19%) after 12 months of follow-up (10 partial and 3 full). Sick leave in the 12 months before study entry appeared to be the most important predictor of the institution or increase in a work disability pension (odds ratio, 16.1; 95%CI, 1.8–142.8). Between study entry and follow-up, the number of patients with workplace adaptations increased from 20 (29%) to 28 (42%), whereas the number of patients receiving vocational guidance decreased from 48 (70%) to 36 (52%). In patients with early arthritis and a paid job, arthritis-related sick leave was common and occurred in part before patients entered the EAC and a diagnosis was made. About 20% of the patients became permanently work disabled, with partial work disability being more common than full work disability. Considerable proportions of patients received workplace adaptations and professional guidance with working problems.
PMCID: PMC2092406  PMID: 17492248
Arthritis; Occupational health; Sick leave; Vocational rehabilitation; Work disability
24.  A comparison of the measurement properties of the Juvenile Arthritis Functional Assessment Scale with the childhood health assessment questionnaire in daily practice 
Clinical Rheumatology  2007;26(11):1903-1907.
We compared the measurement properties of a performance test (Juvenile Arthritis Functional Assessment Scale; JAFAS) with a questionnaire-based instrument (Childhood Health Assessment Questionnaire; CHAQ) to measure functional ability in patients with juvenile idiopathic arthritis on the level of individual items. In 28 consecutive children visiting an outpatient paediatrics clinic, the JAFAS (range 0–20) and CHAQ (range 0–3) were applied, and measures of disease activity and joint range of motion (ROM) were determined. Twenty-eight children with a median age of 10 years and median disease duration of 3.2 years were included. The median JAFAS score was 0, and the median CHAQ score was 0.125. Cronbach’s alpha was 0.92 for the JAFAS and 0.96 for the CHAQ. The Spearman correlation coefficient between the JAFAS and the CHAQ was 0.55 (P < 0.01). With six out of ten items, the JAFAS classified the child as less disabled than with corresponding CHAQ activities. Overall, associations with measures of disease activity and ROM were higher for the CHAQ than for the JAFAS. A performance test (JAFAS) does not appear to have an added benefit over the questionnaire-based assessment (CHAQ) of physical function in a cross-sectional study.
PMCID: PMC2039777  PMID: 17700993
Activities of daily living; Disability evaluation; Juvenile idiopathic arthritis; Questionnaire
25.  Internet-Based Physical Activity Interventions: A Systematic Review of the Literature 
Nowadays people are extensively encouraged to become more physically active. The Internet has been brought forward as an effective tool to change physical activity behavior. However, little is known about the evidence regarding such Internet-based interventions.
The aim of the study was to systematically assess the methodological quality and the effectiveness of interventions designed to promote physical activity by means of the Internet as evaluated by randomized controlled trials.
A literature search was conducted up to July 2006 using the databases PubMed, Web of Science, EMBASE, PsycINFO, and Cochrane Library. Only randomized controlled trials describing the effectiveness of an Internet-based intervention, with the promotion of physical activity among adults being one of its major goals, were included. Data extracted included source and year of publication, country of origin, targeted health behaviors, participants’ characteristics, characteristics of the intervention, and effectiveness data. In addition, the methodological quality was assessed.
The literature search resulted in 10 eligible studies of which five met at least nine out of 13 general methodological criteria. The majority of the interventions were tailored to the characteristics of the participants and used interactive self-monitoring and feedback tools. Six studies used one or more theoretical models to compose the contents of the interventions. One study used an objective measure to assess the amount of physical activity (activity monitor), and six studies used multiple subjective measures of physical activity. Furthermore, half of the studies employed measures of physical fitness other than physical activity. In three studies, an Internet-based physical activity intervention was compared with a waiting list group. Of these three studies, two reported a significantly greater improvement in physical activity levels in the Internet-based intervention than in the control group. Seven studies compared two types of Internet-based physical activity interventions in which the main difference was either the intensity of contact between the participants and supervisors (4 studies) or the type of treatment procedures applied (3 studies). In one of these studies, a significant effect in favor of an intervention with more supervisor contact was seen.
There is indicative evidence that Internet-based physical activity interventions are more effective than a waiting list strategy. The added value of specific components of Internet-based physical activity interventions such as increased supervisor contact, tailored information, or theoretical fidelity remains to be established. Methodological quality as well as the type of physical activity outcome measure varied, stressing the need for standardization of these measures.
PMCID: PMC2047289  PMID: 17942388
Physical activity; exercise; Internet; behaviour change; systematic review; consumer health informatics

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