Do patient-reported outcome measures cover personal factors important to people with rheumatoid arthritis? A mixed methods design using the International Classification of Functioning, Disability and Health as frame of reference

Background: Personal factors (PFs) are internal factors that determine functioning and the individuals' experience of disability. Their coverage by patient-reported outcome measures (PROMs) has not been examined in rheumatoid arthritis (RA) so far. The aims of this study were to identify PFs important in the life stories of people with RA and to determine their coverage by PROMs used in RA. Methods: The qualitative data of people with RA was explored to identify PFs. Additionally a systematic literature search was conducted to find PROMs used in RA. PROMs items were linked to the components, domains and categories of the International Classification of Functioning, Disability and Health (ICF) to determine the coverage of important PFs by PROMs. Results: Twelve PFs were found to be important in the life stories of people with RA. The PFs coping and reflecting about one's life in an optimistic way were covered most frequently, each by 14 of the 42 explored PROMs, while job satisfaction was not covered at all. The London Coping with Rheumatoid Arthritis Questionnaire, General Self-Efficacy Scale, Arthritis Self-Efficacy Scale, Rheumatoid Arthritis Self-Efficacy Questionnaire and Revised Ways of Coping Inventory covered most PFs. Nineteen PROMs did not cover any of the PFs. Conclusion: Several PFs were identified as important in the life stories of people with RA, but only 55% of the PROMS covered some of these PFs. When evaluating PFs important to people with RA, health professionals should be alert on which PROMs can be used to assess which PFs

Do patient-reported outcome measures cover personal factors important to people with rheumatoid arthritis? A mixed methods design using the International Classification of Functioning, Disability and Health as frame of reference

Background: Personal factors (PFs) are internal factors that determine functioning and the individuals' experience of disability. Their coverage by patient-reported outcome measures (PROMs) has not been examined in rheumatoid arthritis (RA) so far. The aims of this study were to identify PFs important in the life stories of people with RA and to determine their coverage by PROMs used in RA. Methods: The qualitative data of people with RA was explored to identify PFs. Additionally a systematic literature search was conducted to find PROMs used in RA. PROMs items were linked to the components, domains and categories of the International Classification of Functioning, Disability and Health (ICF) to determine the coverage of important PFs by PROMs. Results: Twelve PFs were found to be important in the life stories of people with RA. The PFs coping and reflecting about one's life in an optimistic way were covered most frequently, each by 14 of the 42 explored PROMs, while job satisfaction was not covered at all. The London Coping with Rheumatoid Arthritis Questionnaire, General Self-Efficacy Scale, Arthritis Self-Efficacy Scale, Rheumatoid Arthritis Self-Efficacy Questionnaire and Revised Ways of Coping Inventory covered most PFs. Nineteen PROMs did not cover any of the PFs. Conclusion: Several PFs were identified as important in the life stories of people with RA, but only 55% of the PROMS covered some of these PFs. When evaluating PFs important to people with RA, health professionals should be alert on which PROMs can be used to assess which PFs

Development of a new occupational balance-questionnaire: incorporating the perspectives of patients and healthy people in the design of a self-reported occupational balance outcome instrument

BACKGROUND: Self-reported outcome instruments in health research have become increasingly important over the last decades. Occupational therapy interventions often focus on occupational balance. However, instruments to measure occupational balance are scarce. The aim of the study was therefore to develop a generic self-reported outcome instrument to assess occupational balance based on the experiences of patients and healthy people including an examination of its psychometric properties. METHODS: We conducted a qualitative analysis of the life stories of 90 people with and without chronic autoimmune diseases to identify components of occupational balance. Based on these components, the Occupational Balance-Questionnaire (OB-Quest) was developed. Construct validity and internal consistency of the OB-Quest were examined in quantitative data. We used Rasch analyses to determine overall fit of the items to the Rasch model, person separation index and potential differential item functioning. Dimensionality testing was conducted by the use of t-tests and Cronbach’s alpha. RESULTS: The following components emerged from the qualitative analyses: challenging and relaxing activities, activities with acknowledgement by the individual and by the sociocultural context, impact of health condition on activities, involvement in stressful activities and fewer stressing activities, rest and sleep, variety of activities, adaptation of activities according to changed living conditions and activities intended to care for oneself and for others. Based on these, the seven items of the questionnaire (OB-Quest) were developed. 251 people (132 with rheumatoid arthritis, 43 with systematic lupus erythematous and 76 healthy) filled in the OB-Quest. Dimensionality testing indicated multidimensionality of the questionnaire (t = 0.58, and 1.66 after item reduction, non-significant). The item on the component rest and sleep showed differential item functioning (health condition and age). Person separation index was 0.51. Cronbach’s alpha changed from 0.38 to 0.57 after deleting two items. CONCLUSIONS: This questionnaire includes new items addressing components of occupational balance meaningful to patients and healthy people which have not been measured so far. The reduction of two items of the OB-Quest showed improved internal consistency. The multidimensionality of the questionnaire indicates the need for a summary of several components into subscales

Initial evidence for the link between activities and health: associations between a balance of activities, functioning and serum levels of cytokines and C-reactive protein

AbstractGrowing evidence shows interrelations of psychological factors, neurological and immunological processes. Therefore, constructs like a balance of activities, the so called “occupational balance”, could also have biological correlates. The aim of this study was to investigate potential associations between occupational balance, functioning, cytokines and C-reactive protein (CRP) in patients suffering from a chronic inflammatory disease like rheumatoid arthritis (RA) and healthy people. Moreover, we wanted to explore potential differences in gender and employment status.A descriptive study in patients with RA and healthy people was conducted using the Occupational Balance-Questionnaire (OB-Quest) and the Short-Form 36 Health Survey (SF-36). Serum levels of cytokines, such as interleukin 6 (IL-6) and 8 (IL-8), interferon alpha (INFα), tumour necrosis factor alpha (TNFα), rheumatoid factor (RF) and of CRP were measured. Descriptive statistics, as well as Mann-Whitney U tests and Spearmen's rank correlation coefficients (rs) were calculated.One-hundred-thirty-two patients with RA and 76 healthy people participated. Occupational balance was associated with functioning, cytokines and CRP. The strongest associations were identified in the unemployed healthy-people sample with cytokines and CRP being within the normal range. For example, the OB-Quest item challenging activities was associated with IL-8 (rs=−0.63, p=0.04) and the SF-36 sub-scale bodily pain was associated with IFNα (rs=−0.69, p=0.02). The items rest and sleep (rs=−0.71, p=0.01) and variety of different activities (rs=−0.74, p<0.01) correlated with the SF-36 sub-scale social functioning. Employed and unemployed people differed in their age and CRP levels. Additionally, gender differences were found in two OB-Quest items in that fewer women were able to adapt their activities to changing living conditions and fewer men were overstressed. In conclusion, we found preliminary biological evidence for the link between occupation and health in that the concepts encompassed in the construct of occupational balance were associated with functioning, cytokines and CRP

Assessing acceptability and identifying barriers and facilitators to implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with rheumatology professionals in 23 European and Asian countries

Objectives: To disseminate and assess the level of acceptability and applicability of the EULAR recommendations for patient education among rheumatology professionals across Europe and 3 Asian countries, and identify potential barriers and facilitators to their application.Methods: A parallel convergent mixed methods research design with an inductive approach was used. A web-based survey, available in 20 different languages, was distributed to health professionals by non-probability sampling. The level of agreement and applicability of each recommendation was assessed by (0 to 10) rating scales. Barriers and facilitators to implementation were assessed using free-text responses. Quantitative data were analysed descriptively and qualitative data by content analysis and presented in 16 categories supported by quotes. Results: A total of 1159 participants completed the survey; 852 (73.5%) were women. Most of the professionals were nurses (n=487), rheumatologists (n=320), physiotherapists (n=158). For all recommendations, the level of agreement was high but applicability was lower. The four most common barriers to application were: lack of time, lack of training in how to provide patient education, not having enough staff to perform this task and lack of evaluation tools. The most common facilitators were: tailoring patient education to individual patients, using group education, linking patient education with diagnosis and treatment, and inviting patients to provide feedback on patient education delivery.Conclusions: This project has disseminated the EULAR recommendations for patient education to health professionals across 23 countries. Potential barriers to their application were identified and some are amenable to change, namely training patient education providers and developing evaluation tools

The European musculoskeletal conditions surveillance and information network (eumusc.net) work package 5 : development of user-focused standards of care for osteoarthritis and rheumatoid arthritis, implementation of the standards of care for osteoarthritis in an interdisciplinary intervention focused on functioning and exercises and a subsequent rendomised controlled trial - the interdisciplinary intervention for hand osteoarthritis (IIHOA) study

Background: Rheumatoid arthritis and osteoarthritis are two extremely important rheumatic conditions. These two diseases are a burden to the individual as well as to the society. For the cost-efficient treatment evidence-based treatment concepts are required. One aim of the eumusc.net project, an EU-project, was to provide evidence-based information with easy wording to enable patients to become active partners in their treatment. Methods: Based on a review of literature, an interdisciplinary and international group of experts, including patient research partners, developed in two Delphi-studies standards of care for rheumatoid arthritis and osteoarthritis, within the eumusc.net project. Based on the standards of care for osteoarthritis, an innovative and interdisciplinary intervention for hand osteoarthritis was developed and tested in a randomised controlled trial against routine care plus placebo. Results: The standards of care for rheumatoid arthritis contain sixteen statements for rheumatoid arthritis and the standards of care for osteoarthritis consist from ten statements. For each clinical picture an expert version and a version for laypersons was composed and translated to 23 languages of the European Union to offer evidence based information to a wide range of interested persons. The randomised controlled trial, in which 151 patients could be included showed significant improvement in the intervention group in the primary outcome grip strength, compared to the routine group plus placebo. Conclusion: When using the method of a Delphi-study, standards of care for rheumatoid arthritis and osteoarthritis, could be developed and should contribute through the comprehensive translations to the information in Europe. The standards of care for osteoarthritis could be successfully implemented in a treatment concept for hand osteoarthritis and showed significant enhancement of grip strength during a randomised controlled trial in the intervention group.Hintergrund: Rheumatoide Arthritis und Arthrose stellen zwei überaus bedeutsame Erkrankungen des rheumatischen Formenkreises dar. Dabei bilden diese beiden Krankheitsbilder eine große Belastung sowohl für das Individuum als auch für die Gesellschaft. Zur kosteneffizienten Behandlung sind evidenzbasierte Behandlungskonzepte erforderlich. Ein Ziel des eumusc.net Projektes - eines EU-Projektes - war es, evidenzbasierte Information in leicht verständlicher Sprache zugänglich zu machen um es zu ermöglichen, dass Patientinnen und Patienten als aktive Partner in der Behandlung agieren können. Methodik: Aufbauend auf Literaturrecherchen wurden von einer interdisziplinären und internationalen Expertinnen- und Expertengruppe, inklusive Patientinnen und Patientenforschungspartnern, in zwei Delphi-Studien Behandlungsstandards für Rheumatoide Arthritis und Arthrose, im Rahmen des eumusc.net Projektes entwickelt. Anhand der Standards für Arthrose wurde eine innovative und interdisziplinäre Intervention für Fingerpolyarthrose erstellt und diese, in einem randomisiert kontrollierten Versuch gegen die Routinebehandlung plus Placebo, getestet. Resultate: Die Behandlungsstandards für Rheumatoide Arthritis umfassen sechzehn Statements, die Behandlungsstandards für Arthrose werden aus zehn Statements gebildet. Für jedes Krankheitsbild wurde eine Expertinnen-/Expertenversion und eine für Laien leicht verständliche Version verfasst und in 23 Sprachen der Europäischen Union übersetzt, um evidenzbasierte Information einer großen Gruppe von Interessierten zugänglich zu machen. Der randomisiert kontrollierte Versuch, in dem 151 Patientinnen und Patienten mit Fingerpolyarthrose eingeschlossen wurden, konnte zeigen, dass in der Interventionsgruppe die primäre Ergebnismessgröße Handkraft, im Vergleich zur Routinegruppe plus Placebo, sich signifikant verbessert hat. Conclusio: Durch die Methode der Delphi-Studie konnten Behandlungsstandards für Rheumatoide Arthritis und Arthrose entwickelt werden und sollen durch die umfangreichen Übersetzungen zur Information in Europa beitragen. Die Behandlungsstandards für Arthrose konnten erfolgreich in einem Behandlungskonzept für Fingerpolyarthrose implementiert werden und es zeigten sich in einem randomisiert kontrollierten Versuch signifikante Verbesserungen der Handkraft in der Interventionsgruppe.submitted by Michaela Stoffer, MScAbweichender Titel laut Übersetzung der Verfasserin/des VerfassersMedizinische Universität Wien, Dissertation, 2016OeBB(VLID)171450

Development of healthcare quality indicators for rheumatoid arthritis in Europe: the eumusc.net project.

Eumusc.net (http://www.eumusc.net) is a European project supported by the EU and European League Against Rheumatism to improve musculoskeletal care in Europe

Development of patient-centred standards of care for rheumatoid arthritis in Europe: the eumusc.net project

OBJECTIVE: The eumusc.net project is a European Union (EU) commission and European League Against Rheumatism (EULAR)funded project that aims to facilitate equal standards for musculoskeletal health in all EU countries. One work-package was to develop evidence-based and patient-centred standards of care (SOC), for rheumatoid arthritis (RA) understandable for patients and professionals across Europe. METHOD: A review of documents covering clinical practice ‘guidelines’ and SOC for RA was conducted. The obtained documents were evaluated using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) criteria, and all recommended methods to treat RA were extracted. Based on this information, a three-round Delphi exercise was performed including a consensus group meeting of 21 researchers and patient representatives. RESULTS: 16 patient-centred SOC were formulated including a lay version in the format of a checklist. An example is SOC 3: ‘People with RA should receive a treatment plan developed individually between them and their clinician at each visit.’ The corresponding checklist question reads: ‘Have I received a treatment plan which includes an explanation of my management, expected goals and outcomes and important contact details?’ CONCLUSIONS: The SOC for RA will be available in all 23 official European languages and contribute to more unified treatment approaches in Europe

Perceptions of risk and predictive testing held by the first-degree relatives of patients with rheumatoid arthritis in England, Austria and Germany:A qualitative study

Objectives: The family members of patients with rheumatoid arthritis (RA) are at increased risk of developing RA and are potential candidates for predictive testing. This study explored the perceptions of first-degree relatives of people with RA about being at risk of RA and engaging in predictive testing. Methods: 34 first-degree relatives (siblings and offspring) of patients with RA from the UK, Germany and Austria participated in semistructured interviews about their perceptions of RA risk and the prospect of predictive testing. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Results: First-degree relatives were aware of their susceptibility to RA, but were unsure of the extent of their risk. When considering their future risk, some relatives were concerned about the potential impact that RA would have on their lives. Relatives were concerned that knowing their actual risk would increase their anxiety and would affect decisions about their future. Also, relatives were concerned about the levels of uncertainty associated with predictive testing. Those in favour of knowing their future risk felt that they would need additional support to understand the risk information and cope with the emotional impact of this information. Conclusions: Identifying individuals at risk of RA may allow targeted interventions to reduce the risk and consequence of future disease; however, relatives have concerns about predictive testing and risk information. The development of strategies to quantify and communicate risk needs to take these views into account and incorporate approaches to mitigate concerns and minimise the psychological impact of risk information

Functional consultation and exercises improve grip strength in osteoarthritis of the hand – a randomised controlled trial

Abstract Background Evidence for non-pharmacological interventions in hand osteoarthritis is promising but still scarce. Combined interventions are most likely to best cover the clinical needs of patients with hand osteoarthritis (OA). The aim of this study was to evaluate the effect of a combined, interdisciplinary intervention feasible in both primary and specialist care compared to routine care plus placebo in patients with hand OA. Methods This was a randomised, controlled 2-month trial with a blinded assessor. In the combined-intervention group, rheumatology-trained health professionals from different disciplines delivered a one-session individual intervention with detailed information on functioning, activities of daily living, physical activity, nutrition, assistive devices, instructions on pain management and exercises. Telephone follow up was performed after 4 weeks. The primary outcome was grip strength after 8 weeks. Secondary outcomes were self-reported pain, satisfaction with treatment, health status, two of the Jebsen-Taylor Hand Function subtests and the total score of the Australian/Canadian Hand Osteoarthritis Index (AUSCAN). Statistical significance was calculated by Student’s t test or the Mann-Whitney U test depending on data distribution. Binominal logistic regression models were fitted, with the primary outcome being the dependent and the group allocation being the independent variable. Results There were 151 participating patients (74 in the combined-intervention and 77 in the routine-care-plus-placebo group) with 2-month follow-up attendance of 84% (n = 128). Grip strength significantly increased in the combined-intervention group and decreased in the routine-care group (dominant hand, mean 0.03 bar (SD 0.11) versus − 0.03 (SD 0.13), p value = 0.001, baseline corrected values) after 8 weeks. Conclusion The combined one-session individual intervention significantly improved grip strength and self-reported satisfaction with treatment in patients with hand OA. It can be delivered by different rheumatology-trained health professionals and is thus also feasible in primary care. Trial registration ISRCTN registry, ISRCTN62513257. Registered on 17 May 2012