[show abstract][hide abstract] ABSTRACT: Introduction
In order to target the educational needs of patients more effectively, an Austrian-German educational needs assessment tool (OENAT) was developed. The educational needs of patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) and hand osteoarthritis (HOA) were described and the relationships between educational needs, gender, disease activity and function were explored.
The English ENAT was adapted into Austrian-German using Beaton's cross-cultural adaptation process. Internal construct validity was assessed by Rasch analysis. Educational needs across diagnostic groups and subgroups of patients were summarized descriptively and their relationship with disease activity and physical functioning explored.
The sample consisted of 130 RA, 125 PsA and 48 HOA patients. Their mean ages +/- SD were 56 +/- 14, 51 +/- 11 and 64 +/- 7 years for RA, PsA and HOA, respectively; disease duration was 11 +/- 9, 11 +/- 11 and 14 +/- 9 years, respectively. More than 70% in each patient group expressed interest in receiving education about their disease. The educational needs differed significantly between women and men in all 3 groups. In RA and PsA, female patients expressed significantly higher educational needs than men in 'movements' and 'feelings' domains (P = 0.04 and P = 0.03 for RA and P < 0.01 and P = 0.01 for PsA). Female patients in the HOA group had significantly higher scores on all domains except for the 'movements'. Older patients with PsA scored significantly higher than their younger counterparts in the 'pain' domain (P = 0.05). RA patients with a disease duration >5 years, expressed higher educational needs in 'movements' (P < 0.01). Educational background had an effect in the PsA group only, patients with basic education had greater scores than those with higher education on 'movements' and 'arthritis process' (P = 0.01). In the RA group, DAS28 correlated significantly with 'movements' (r = 0.24, P = 0.01), 'feelings' (r = 0.22, P = 0.02), and 'treatments' (r = 0.22, P = 0.03). In the PsA group, all OENAT domains correlated with disease activity (disease activity index for psoriatic arthritis and clinical disease activity index).
This study showed that educational needs vary with personal characteristics. Patient education may be more targeted and effective, if gender, age, educational background and disease duration are taken into account. Correlations with disease activity and function suggest that the OENAT can enable identification of 'intervention points', which can be ideal opportunities for effective patient education.
Arthritis Research & Therapy 10/2013; 15(5). · 4.30 Impact Factor
[show abstract][hide abstract] ABSTRACT: 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.
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.
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 χ(2) 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 χ(2) p>0.18) in all pooled disease group datasets except OA (χ(2)=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.
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.
Annals of the rheumatic diseases 08/2013; · 8.11 Impact Factor
[show abstract][hide abstract] ABSTRACT: To develop a radiographic score for assessment of hand osteoarthritis (OA) that is based on histopathological alterations of the distal (DIP) and proximal (PIP) interphalangeal joints.
DIP and PIP joints were obtained from corpses (n=40). Plain radiographies of these joints were taken. Joint samples were prepared for histological analysis; cartilage damage was graded according to the Mankin scoring system. A 2×2 Fisher's exact test was applied to define those radiographic features most likely to be associated with histological alterations. Receiver operating characteristic curves were analysed to determine radiographic thresholds. Intraclass correlation coefficients (ICC) estimated intra- and inter-reader variability. Spearman's correlation was applied to examine the relationship between our score and histopathological changes. Differences between groups were determined by a Student's t test.
The Interphalangeal Osteoarthritis Radiographic Simplified (iOARS) score is presented. The score is based on histopathological changes of DIP and PIP joints and follows a simple dichotomy whether OA is present or not. The iOARS score relies on three equally ranked radiographic features (osteophytes, joint space narrowing and subchondral sclerosis). For both DIP and PIP joints, the presence of one x-ray features reflects interphalangeal OA. Sensitivity and specificity for DIP joints were 92.3% and 90.9%, respectively, and 75% and 100% for PIP joints. All readers were able to reproduce their own readings in DIP and PIP joints after 4 weeks. The overall agreement between the three readers was good; ICCs ranged from 0.945 to 0.586. Additionally, outcomes of the iOARS score in a hand OA cohort revealed a higher prevalence of interphalangeal joint OA compared with the Kellgren and Lawrence score.
The iOARS score is uniquely based on histopathological alterations of the interphalangeal joints in order to reliably determine OA of the DIP and PIP joints radiographically. Its high specificity and sensitivity together with the dichotomous approach renders the iOARS score reliable, fast to perform and easy to apply. This tool may not only be valuable in daily clinical practice but also in clinical and epidemiological trials.
Annals of the rheumatic diseases 07/2013; · 8.11 Impact Factor
[show abstract][hide abstract] ABSTRACT: Abstract Purpose: Drawing on data from a larger study, the aim of this paper is to illuminate how the everyday doings of women with disabilities are coordinated to and shaped by organizational processes and social context, particularly as these relate to the potential of being labelled disabled. Methods: An institutional ethnography was conducted with seven Austrian women diagnosed with rheumatoid arthritis (RA). Interviews and participant observations were conducted, and texts about the historical development of disability policies were identified. Data analysis included grouping similar doings of participants together to subsequently explore links between what the women did and how their doings are shaped by disability policies and the social context. Results: The women, who participated in this study, spent time and effort to keep the disease invisible, resist disability and negotiate a disability pass. By drawing upon the historical development of Austrian disability policies, the interpretation reveals how this development infiltrates into participants' lives and shapes their everyday doing. Conclusion: This study furthers understanding of how broader policies and practices, shaped over historical time, infiltrate into the daily lives of women with disabilities. It illustrates how full participation may not necessarily be a lived reality for people with disabilities at this point in Austria. Implications for Rehabilitation Maximising full participation for people with rheumatoid arthritis is important. This requires focusing not only on the bodily health of people with rheumatoid arthritis but also on their interaction with the social, cultural and political context in their daily lives. This requires also understanding how knowledge about disability is passed on from previous generations.
Disability and Rehabilitation 06/2013; · 1.54 Impact Factor
[show abstract][hide abstract] ABSTRACT: Background: Despite the advocated use of rehabilitation tools in clinical rehabilitation of with rheumatoid arthritis (RA) patients, little is known about the representation of the patient perspective in these tools. Aim: Aim of the study was to explore the experiences of RA patients with rehabilitation and the coverage by rehabilitation tools. Design and population: Qualitative focus group study with RA patients about experiences with rehabilitation. Setting: Rheumatology rehabilitation clinic of a Dutch university hospital. Methods: Focus groups were tape recorded and transcribed verbatim. From the meaningful units, concepts were extracted and linked to the International Classification of Functioning, Disability and Health (ICF). Rehabilitation tools validated for RA were identified using a structured literature search. Using the ICF as common framework, we determined for each concept identified in the focus groups the coverage by each rehabilitation tool. Results: Nineteen patients participated in 4 focus groups. Fifty-one concepts were identified in 368 meaningful units derived from the transcribed data. From the literature the ICF Core Sets for RA, Canadian Occupational Performance Measure, Rehabilitation Activities Profile and WHO Disability Assessment Schedule II were elected. The concepts from the focus groups were best covered by the ICF Core Sets (44 out of 51; 86%), followed by the WHODAS II (39%), RAP (35%) and COPM (16%). Conclusion: With the exception of the ICF Core Sets for RA, current rehabilitation tools poorly cover the RA patients' perception on rehabilitation. Clinical rehabilitation impact: The ICF Core Sets can serve as a checklist to guide multidisciplinary assessment, goal-setting and evaluation in RA rehabilitation.
European journal of physical and rehabilitation medicine 05/2013; · 2.06 Impact Factor
[show abstract][hide abstract] ABSTRACT: BACKGROUND AND AIMS: Busy clinical settings often restrict the possibility to focus on concepts that determine health in a positive way, commonly assessed by using patient-reported outcomes (PROs). We aimed to explore which determinants of health (DHs) are important to people with Crohn's disease (CD), to understand possible gender differences and to analyze whether these DHs are covered by PROs used in CD. METHODS: Two systematic literature reviews were done to identify relevant DHs and clinically relevant PROs. We conducted a qualitative narrative biographical study and mapped the patients' experiences to concepts that determine health in a positive way. Experiences, DHs and the items of the PROs were compared by the WHO International Classification of Functioning, Disability and Health (ICF) as a common framework. RESULTS: 15 people with CD with a median age of 46years (IQR 34-60) and median disease duration of 15years (IQR 8-30) participated. Self-efficacy, social support, job satisfaction and occupational balance were mentioned most frequently. While participation appeared to have greater meaning to men, appreciation and resilience seemed to be more important for women. Of 18 PROs the Perceived Stress Questionnaire (PSQ), the Inflammatory Bowel disease - Self-efficacy scale (IBD-SES), the Life Orientation Test - Revised (LOT-R) and the Patient Activation Measure 13 (PAM-13) cover most DHs. CONCLUSIONS: This is the first study elaborating the coverage of patient's perspective by commonly used PROs in CD. The findings could support health professionals to focus on DHs in people with CD in clinical practice and research.
Journal of Crohn s and Colitis 01/2013; · 3.39 Impact Factor
[show abstract][hide abstract] ABSTRACT: Objective. Haemochromatosis arthropathy is a secondary OA and the most frequent and earliest clinical presentation of hereditary haemochromatosis (HH). The aim of this study was to perform a direct clinical, functional and radiographic comparison with idiopathic hand OA (HOA) to unravel important differences between these clinical entities.Methods. In total, 299 patients (141 with HH arthropathy of the hands and 158 patients with idiopathic HOA) were recruited. Structured clinical assessment including hand function tests, as well as hand radiographs with scoring according to Kellgren-Lawrence, were carried out in all patients.Results. HH arthropathy and HOA differed significantly: patients with HH arthropathy were younger and predominantly male as compared with HOA. In males but not females, HH arthropathy led to an earlier start of symptoms than in HOA. Patients with HOA had more tender joints and worse hand function than patients with HH arthropathy, although subjective measures of joint pain and function were similar. MCP and wrist joint involvement was more frequent and severe in HH arthropathy, while HOA patients more frequently had degenerative changes in the first CMC as well as PIP and DIP joints.Conclusion. HH arthropathy and idiopathic HOA differ significantly in terms of epidemiology, localization, severity of symptoms and radiographic changes.
[show abstract][hide abstract] ABSTRACT: BACKGROUND: The Gaenslen test (GT; "squeeze test", "compression test") is characterized by pain upon lateral compression (squeezing) of the metacarpophalangeal (MCP) or metatarsophalangeal (MTP) joints. OBJECTIVES: To assess factors related to a positive GT and to explore differences in disease activity between GT+ and GT- patients. METHODS: GT was performed routinely in outpatients with RA. 229 patients had a positive GT (GT+ group). To this group, we matched a GT- group (n=222) comparable in sex, age, disease duration and rheumatoid factor (RF) positivity. Disease activity scores, swollen and tender joints, patient pain and global assessments, morning stiffness, disability, acute phase reactants, RF and ACPA levels were assessed and used for correlation analyses. A comparison between the GT+ and GT- groups was performed and a regression model was calculated. RESULTS: All clinical variables, including disease activity scores, joint counts and disability were significantly higher in the GT+ than the GT- patients. There were also significantly less patients in remission or low disease activity in the GT+ group. GT positivity correlated most strongly (r>0.5) with joint tenderness (32 and 28 joints). Tender proximal interphalangeal, MCP and MTP joints appeared mostly responsible for a positive GT, but at least more than 1 MCP/MTP joint had to be tender to explain a positive GT. CONCLUSION: The GT squeeze test is related primarily to tenderness in MCP and MTP joints and signifies a moderate to high disease activity among patients with RA.
[show abstract][hide abstract] ABSTRACT: OBJECTIVE: Performance of the 2010 American College of Rheumatology (ACR)/European League Against Rheumatism (EULAR) rheumatoid arthritis (RA) criteria was analysed in an internationally recruited early arthritis cohort (≤16 weeks symptom duration) enrolled in the 'Stop-Arthritis-Very-Early' trial. This sample includes patients with a variety of diseases diagnosed during follow-up. METHODS: Two endpoints were defined: Investigators' diagnosis and disease-modifying antirheumatic drug (DMARD) treatment start during the 12-month follow-up. The 2010 criteria were applied to score Patients' baseline data. Sensitivity, specificity, predictive values and areas under the receiver operating curves of this scoring with respect to both endpoints were calculated and compared to the 1987 criteria. The optimum level of agreement between the endpoints and the 2010 classification score ways estimated by Cohen's ϰ coefficients. RESULTS: 303 patients had 12-months follow-up. Positive predictive values of the 2010 criteria were 0.68 and 0.71 for RA-diagnosis and DMARD-start, respectively. Sensitivity for RA-diagnosis was 0.85, for DMARD-start 0.8, whereas the 1987 criteria's sensitivities were 0.65 and 0.55. The areas under the receiver operating curves of the 2010 criteria for RA-diagnosis and DMARD-start were 0.83 and 0.78. Analysis of inter-rater-agreement using Cohen's ϰ demonstrated the highest ϰ values (0.5 for RA-diagnosis and 0.43 for DMARD-start) for the score of 6. CONCLUSIONS: In this international very early arthritis cohort predictive and discriminative abilities of the 2010 ACR/EULAR classification criteria were satisfactory and substantially superior to the 'old' 1987 classification criteria. This easier classification of RA in early stages will allow targeting truly early disease stages with appropriate therapy.
Annals of the rheumatic diseases 09/2012; · 8.11 Impact Factor
[show abstract][hide abstract] ABSTRACT: Objective. To examine the correlation between disease activity of RA and the risk of falling. Methods. Seventy-eight patients were tested. Disease activity was measured with acute-phase reactants, autoantibodies, swollen and tender joint count (SJC28, TJC28), pain on a visual analogue scale (VAS pain), patient and evaluator global assessment of disease activity (PGA, EGA), HAQ disability index (HAQ-DI), 28-joint DAS (DAS-28) and the clinical and simple disease activity indexes (CDAI, SDAI). The risk of falling was evaluated by a fall assessment consisting of Tinetti test (TIT), timed get up and go test (TUG), chair-rising test (CRT), tandem walk and tandem stand test. Results. During the last 12 months, 26.9% of the participants reported a fall and 46.2% mentioned the fear of falling. The most evident link [Spearman's correlation (r(s))] with the results of the fall assessment was found in HAQ-DI (CRT: r(s) = 0.523, TUG: r(s) = 0.620, TIT: r(s) = -0.676), CDAI (CRT: r(s) = 0.460, TUG: r(s) = 0.504, TIT: r(s) = -0.472), VAS pain (CRT: r(s) = 0.441, TUG: r(s) = 0.616, TIT: r(s) = -0.548) PGA (CRT: r(s) = 0.473, TUG: r(s) = 0.577, TIT: r(s) = -0.520) and TJC (CRT: r(s) = 0.488, TUG: r(s) = 0.394, TIT: r(s) = -0.385). Patients with higher disease activity achieved poorer results in the fall assessment. Conclusion. The strongest correlation with falls was evident for patient-reported outcomes. Pain seems to be the common ground of these parameters. At the same time, disease activity influences pain. The results suggest an increased attention towards the risk of falling with patients of higher levels of disease activity or pain, and physio- or ergotherapeutical interventions as needed.
[show abstract][hide abstract] ABSTRACT: Current therapies for psoriatic arthritis (PsA) comprise synthetic drugs and tumour necrosis factor inhibitors. In contrast, other biologicals including rituximab (RTX) are available for treating rheumatoid arthritis (RA). RTX is effective in autoantibody positive RA patients, although some efficacy has been reported in seronegative individuals. RTX has not yet been assessed in PsA. Therefore, an open label study of RTX in PsA was performed.
Nine patients with PsA and 14 with RA received RTX at 1000 mg twice within 14 days and were evaluated over 6 months.
A PsA response criteria response was attained in 56% of patients. DAS28 improved from 6.2 to 4.9 (medians) in PsA and 6.4 to 5.2 in RA, and Health Assessment Questionnaire from 1.5 to 1.0 and from 2.1 to 1.4, respectively (all p≤0.05). Disease Activity index for PSoriatic Arthritis changed from 52.0 to 32.5 (p<0.05); C reactive protein and Psoriasis Area and Severity Index did not change significantly. RTX was tolerated well.
In this exploratory open study, RTX exhibited significant efficacy in PsA patients with long-standing disease. Thus, RTX may have efficacy in PsA warranting a randomised controlled clinical trial.
Annals of the rheumatic diseases 07/2012; 71(11):1868-71. · 8.11 Impact Factor
[show abstract][hide abstract] ABSTRACT: Occupational science has been discussed in terms of its relation to occupational therapy, its philosophical and theoretical foundations, and its international and interdisciplinary character over the past years. The disciplinary identity of occupational science in non-English speaking countries has not yet been debated in the literature. The aim of this article is to discuss occupational science as an emergent discipline in Austria, a German-speaking country. The discussion is divided into two parts. In the first part we engage in critical reflexivity to explicate the current development of occupational science in Austria by reviewing the disciplinary and historical context of occupational science and the related profession of occupational therapy, the educational and institutional influences as well as the influence of language. In the second part, we illustrate that occupational science is an emerging discipline in Austria by drawing on an ongoing research project: the Gender, Occupational Balance, and Immunology Study. By making explicit how occupational science has emerged, from our insider perspective, we aim to contribute to the further development of the disciplinary identity of occupational science nationally and internationally.
Journal of Occupational Science 06/2012; 19(2):127.
[show abstract][hide abstract] ABSTRACT: To determine the validity and reliability of patients' self-performed joint counts compared to joint counts by professional assessors in rheumatoid arthritis (RA) patients in different disease activity states.
In patients with established RA we determined the inter-rater reliability of joint counts performed by an independent evaluator and the patient using intraclass correlation (ICC), and agreement on activity in individual joints by kappa statistics. We also performed longitudinal analyses to assess consistency of assessments over time. Finally, we investigated the concordance of joint counts of different assessors in patients with different levels of disease activity.
The reliability of patient self-performed joint counts was high when compared to independent objective assessment (ICC; 95%confidence interval (CI)) for the assessment of swelling (0.32; 0.15 to 0.46) and tenderness (0.75; 0.66 to 0.81), with higher agreement for larger joints (kappa: 0.57 and 0.45, respectively) compared to smaller joints (metacarpo-phalangeal joint (MCPs): 0.31 and 0.45; and proximal interphalangeal joint (PIPs): 0.22 and 0.47, for swelling and tenderness, respectively).Patients in remission according to the Simplified Disease Activity Index (SDAI ≤ 3.3) showed better concordance of the joint counts (swollen joint count (SJC) ties 25/37, tender joint count (TJC) ties 26/37) compared to moderate/high disease activity states (SDAI > 11; MDA/HDA: SJC ties 9/72, TJC ties 21/72). Positive and negative predictive values regarding the presence of SDAI remission were reasonably good (0.86 and 0.95, respectively). A separate training session for patients did not improve the reliability of joint assessment. The results were consistent in the longitudinal analyses.
Self-performed joint counts are particularly useful for monitoring in patients having attained remission, as these patients seem able to detect state of remission.
Arthritis research & therapy 03/2012; 14(2):R61. · 4.27 Impact Factor
[show abstract][hide abstract] ABSTRACT: Systemic lupus erythematosus (SLE) is a chronic disease which can affect any organ, and the impact of the condition will affect each person differently. There are few qualitative studies including the experiences of both women and men with a diagnosis of SLE corresponding to the American College of Rheumatology (ACR) criteria where both negative and positive impacts of the disease have been presented.
The aim was to describe how patients with established SLE experience their illness in everyday life, including both negative and positive aspects.
Four focus group interviews were conducted with 16 women and three men with SLE according to ACR criteria, with varied disease activity and no or little organ damage. The interviews were tape recorded, transcribed verbatim and analysed using qualitative content analysis.
Two themes emerged: multifaceted uncertainty contained the categories 'an unreliable body', 'obtrusive pain and incomprehensible fatigue', 'mood changes and worries', 'reliance on medication and health care'; Focus on health and opportunities included 'learning process implying personal strength', 'limitations and possibilities in activities and work', 'a challenge to explain and receive support' and 'living an ordinary life incorporating meaningful occupations'.
While we expected to find a mainly negative impact, positive aspects were also described. Our findings were complex and showed that patients with established SLE can experience both uncertainty and opportunities. This highlights the importance for healthcare professionals of gaining a better understanding of patients' uncertainty, to enable them to support patients, allowing them to focus on health and opportunities. Measurement instruments that capture different aspects of uncertainty and opportunities needs to be developed.
[show abstract][hide abstract] ABSTRACT: Rheumatologist assessment as early as possible is considered essential for patients with inflammatory joint disease. In our Very Early Arthritis Clinic (VEAC), a substantial proportion of initially included and followed patients later stop attendance in the clinic. We questioned attending (AP) and non-attending patients (NAP) regarding current health status and satisfaction with care as well as reasons for discontinuation and current care received by NAP.
VEAC patients first seen between 1996 and 2003 were included. Assessment included the RADAI, HAQ, and visual analogue scales for pain, disease activity, fatigue, satisfaction with current health care. Current (DMARD) treatment was recorded.
Among AP, 87% had rheumatoid arthritis (RA) and 13% non-RA. Of NAP, 37% had RA, 23% non-RA and 40% no more rheumatic disease. Satisfaction with health care concerning rheumatic disease was better in AP than NAP. Likewise, most outcome parameters were better in AP. Substantially more RA patients in the AP than NAP group received DMARDs. Apart from the disappearance of arthritis, logistic reasons were given most frequently for discontinuation of attendance. Less than 10% of NAP indicated dissatisfaction with medical care.
We found advantages in both disease activity measures and satisfaction with health care for patients receiving continuous care in a highly specialised Rheumatology clinic. Furthermore, different DMARD usage in RA in AP and NAP may indicate significant deficits in treatment quality outside specialist care. Logistic issues associated with access to continuous Rheumatology care for early arthritis patients need improvement.
Clinical and experimental rheumatology 02/2012; 30(2):184-90. · 2.66 Impact Factor
[show abstract][hide abstract] ABSTRACT: To explore and describe potential differences between women and men in functioning, health status and socio-economic variables in hand OA.
Unselected patients of an Austrian outpatient clinic meeting the ACR criteria for hand OA were consecutively included and assessed once. Descriptive statistics and subgroup analyses were performed for differences between women and men. By regression analysis, we explored whether the variables sex, practice of sports, manual activities, aesthetic changes and functioning in daily life predict the levels of pain and vitality.
223 (88.1%) women and 30 (11.9%) men were included in the study. Significant differences between women and men were found in involvement in housework, aesthetic changes and own net income. Sex did not contribute significantly to any of the regression models, while e.g. involvement in sports was a strong individual contributor to self-reported vitality - irrespective of sex. Total X-ray scores of both hands as well as the involvement of CMCI joints did not show significant differences.
Our study showed significant differences between women and men with hand OA in socio-economic variables and aesthetic changes. In contrast to our expectations, no other differences between women and men were found in functioning and health status.
Wiener klinische Wochenschrift 10/2011; 123(19-20):603-6. · 0.81 Impact Factor
[show abstract][hide abstract] ABSTRACT: Instruments to assess functioning in patients with FM vary considerably in their content and are often symptom-specific. This study aimed to examine whether it is feasible to construct a psychometric-sound clinical instrument to measure functioning in FM based on the Brief ICF-Core-Set for chronic widespread pain (CWP).
Two hundred and fifty six people with FM completed the Brief ICF-Core-Set. The Rasch model was used for analysis. Once ordering of response options of ICF categories was ensured, the following properties were studied: fit of the ICF categories to the Rasch model, the targeting between ICF categories and a person's abilities, unidimensionality, and reliability.
Six ICF categories were rescored due to disordered thresholds. Five ICF categories were removed due to high model-misfit and differential item functioning (DIF) for gender. Scores from 46 participants were excluded due to extreme scores. The ICF categories included display consistency with an underlying unidimensional construct, are free of DIF for age, disease duration and gender, display excellent overall reliability, and cover a range of functioning difficulties.
This study illustrates that it is possible to measure functioning as a unidimensional construct based on selected ICF categories from the components body functions, as well as activities and participation of the Brief ICF-Core-Set for CWP in patients with FM.
Pain Practice 07/2011; 12(4):255-65. · 2.61 Impact Factor
[show abstract][hide abstract] ABSTRACT: To compare two different approaches to performing focus groups and individual interviews, an open approach, and an approach based on the International Classification of Functioning, Disability and Health (ICF).
Patients with rheumatoid arthritis attended focus groups (n = 49) and individual interviews (n = 21). Time, number of concepts, ICF categories identified, and sample size for reaching saturation of data were compared. Descriptive statistics, Chi-square tests, and independent t tests were performed.
With an overall time of 183 h, focus groups were more time consuming than individual interviews (t = 9.782; P < 0.001). In the open approach, 188 categories in the focus groups and 102 categories in the interviews were identified compared to the 231 and 110 respective categories identified in the ICF-based approach. Saturation of data was reached after performing five focus groups and nine individual interviews in the open approach and five focus groups and 12 individual interviews in the ICF-based approach.
The method chosen should depend on the objective of the study, issues related to the health condition, and the study's participants. We recommend performing focus groups if the objective of the study is to comprehensively explore the patient perspective.
Quality of Life Research 06/2011; 21(2):359-70. · 2.41 Impact Factor
[show abstract][hide abstract] ABSTRACT: To describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective.
A qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of 'meaning condensation' and the concepts that emerged in the analysis were linked to the ICF.
63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were linked to the ICF component body functions and structures, 21 (24%) to activities and participation, 26 (30%) to environmental factors, 6 (7%) to personal factors and 1 (1%) to the health condition itself. 19 concepts (22%) were identified in all four countries and included impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits.
Concepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved.
Annals of the rheumatic diseases 06/2011; 70(6):1074-9. · 8.11 Impact Factor