Patients' experience of a novel interdisciplinary nurse-led self-management intervention (INSELMA)-a qualitative evaluation.

BACKGROUND: Despite continuous improvements in anti-rheumatic pharmacological treatment, people with chronic inflammatory arthritis still report substantial disease impact. Based on the framework for complex interventions, we thus developed INSELMA, a novel nurse-coordinated multidisciplinary self-management intervention for patients with rheumatoid arthritis, psoriatic arthritis or axial spondyloarthritis. Based on individual biopsychosocial assessments, a rheumatology nurse facilitated goal setting and coordinated interdisciplinary support. The aim of this study was to explore the patients' experience of participating in the six-months INSELMA intervention. METHODS: Individual semi-structured interviews were conducted with 15 of the participants after their final follow-up. Thematic analysis was applied. RESULTS: The analysis derived four overall themes. (1) A new opportunity at the right time. The participants' disease impacted all areas of daily life. Participation in INSELMA was experienced as an opportunity to improve symptoms and together reduce long-held challenges they had fought alone, until now. (2) The importance of person-centred goals. The participants found it meaningful to work with their individual goals, which encompassed physical, psychological, and social factors. Having time between consultations to work with goals at home was important. (3) Empathy, partnership and a little nudging from health professionals are essential. The empathic nurses' continuous support and coaching helped participants become aware of their own resources. The participants highlighted having access to support from a physiotherapist and occupational therapist with rheumatology experience as important. (4) I got more than I could have hoped for. Most of the participants experienced decreased symptom load and improvement in physical strength, mobility, sleep, and mood as well as increased energy, knowledge, and self-management ability. The participants expressed new hope for the future with an improved ability to manage their symptoms and work towards new goals. CONCLUSION: The participants found the INSELMA intervention meaningful and feasible. They experienced decreased disease impact and increased activity levels, facilitated by empathy and self-management support from health professionals.

Chronic Pain and Assessment of Pain Sensitivity in Patients With Axial Spondyloarthritis: Results From the SPARTAKUS Cohort.

OBJECTIVE: To study differences in pain reports between patients with ankylosing spondylitis (AS) and nonradiographic axial spondyloarthritis (nr-axSpA), and to assess how pain sensitivity measures associate with disease and health outcomes. METHODS: Consecutive patients with axial SpA (axSpA) were enrolled in the population-based SPARTAKUS cohort (2015-2017) and classified as AS (n = 120) or nr-axSpA (n = 55). Pain was assessed with questionnaires (intensity/duration/distribution) and computerized cuff pressure algometry to measure pain sensitivity (pain threshold/pain tolerance/temporal summation of pain). Linear regression models were used to compare pain measures between patients with AS and nr-axSpA, and to assess associations between pain sensitivity measures and disease and health outcomes. RESULTS: Of 175 patients with axSpA, 43% reported chronic widespread pain, with no significant differences in any questionnaire-derived or algometry-assessed pain measures between patients with AS and nr-axSpA. Lower pain tolerance was associated with longer symptom duration, worse Ankylosing Spondylitis Disease Activity Score using C-reactive protein (ASDAS-CRP), Bath Ankylosing Spondylitis Functional Index, and Bath Ankylosing Spondylitis Metrology Index (BASMI), more pain regions, unacceptable pain, worse Maastricht AS Enthesitis Score (MASES), fatigue, anxiety, and health-related quality of life. Further, lower pain threshold was associated with worse ASDAS-CRP and MASES, whereas higher temporal summation was associated with longer symptom duration, unacceptable pain, and worse BASMI. CONCLUSION: Chronic pain is common in axSpA, with no observed differences in any pain measures between patients with AS and nr-axSpA. Further, higher pain sensitivity is associated with having worse disease and health outcomes. The results indicate that patients with AS and nr-axSpA, in line with most clinical characteristics, have a similar pain burden, and they highlight large unmet needs regarding individualized pain management, regardless of axSpA subgroup.

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

OBJECTIVES: To validate the educational needs assessment tool (ENAT) as a generic tool for assessing the educational needs of patients with rheumatic diseases in European Countries. METHODS: A convenience sample of patients from seven European countries was included comprising the following diagnostic groups: ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematosus, osteoarthritis (OA) and fibromyalgia syndrome. Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group. RESULTS: The sample comprised 3015 patients; the majority, 1996 (66.2%), were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item-trait interaction 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. CONCLUSIONS: The adapted ENAT is a valid tool with high internal consistency providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible.

Cost of illness from the public payers' perspective in patients with ankylosing spondylitis in rheumatological care.

OBJECTIVE: To estimate the incremental costs to public payers for patients with ankylosing spondylitis (AS) of working age compared with reference subjects from the general population. METHODS: We investigated total costs for 3 years (2005-2007) in 116 outpatients under 66 years of age with AS attending rheumatological care in Malmö, Sweden. Mean (SD) age was 46 (11) years and mean (SD) disease duration was 24 (11) years. Two subjects per AS patient matched for age, sex, and residential area were selected from the Population Register to serve as a reference group. We retrieved data concerning sick leave, prescription drugs, and healthcare consumption from Swedish health-cost registers by the unique personal identification numbers. RESULTS: The mean total cost for the 3-year period 2005-2007 was US $37,095 (SD $30,091) for patients with AS, and $11,071 (SD $22,340) for the reference group. The mean indirect cost was $19,618 and $5905, respectively. Mean cost for healthcare was $8998 for the AS patients and $4187 for the reference subjects, and mean cost for drugs was $8479 and $979, respectively. The patients with AS treated with biological therapy constituted 80% of the total drug cost, but just 40% of the cost for disability pension. CONCLUSION: Patients with AS had 3-fold increase in costs compared to reference subjects from the general population, and the drug costs were almost 10 times as high. Production losses (indirect cost) represented more than half of total cost (53%).

Patients with ankylosing spondylitis have increased sick leave--a registry-based case-control study over 7 yrs.

OBJECTIVES: Using prospectively collected registry data to investigate sick leave (sickness benefit and sickness compensation) over a 7-yr period in patients with AS in comparison with population-based controls matched for age, sex and residential area. METHODS: We investigated 122 (21 women and 101 men) outpatients with AS in South Sweden, born 1942 or later, from rheumatology specialist care for their sick leave during a 7-yr period. Mean (S.D.) age was 43 (11) yrs and mean (S.D.) disease duration was 20 (11) yrs. Two controls per case, matched for age, sex and residential area were selected from the Swedish National Population Register. Data concerning sick leave for cases and controls, based on the subjects' unique 10-digit personal identification number, were retrieved from the national register of the Swedish Social Insurance Agency. RESULTS: More AS patients than controls were registered for sickness benefit (52 vs 36%, P < 0.01) and sickness compensation (42 vs 11%, P < 0.001). Cases had an increased risk for sick leave compared with controls with a relative risk of 1.8; 95% CI 1.5, 2.1; and cases had more days with sick leave than controls (median number of more days per year 30; 95% CI 2, 72). CONCLUSIONS: Using the Swedish Social Insurance Agency's registers for sick leave, we found that patients with AS in rheumatology specialist care in South Sweden have an increased level of sick leave compared with controls. These population-based registers have a great potential for studies of the effects of different interventions on sick leave.

Validation of the Rheumatoid and Arthritis Outcome Score (RAOS) for the lower extremity.

BACKGROUND: Patients with inflammatory joint diseases tend due to new treatments to be more physically active; something not taken into account by currently used outcome measures. The Rheumatoid and Arthritis Outcome Score (RAOS) is an adaptation of the Knee injury and Osteoarthritis Outcome Score (KOOS) and evaluates functional limitations of importance to physically active people with inflammatory joint diseases and problems from the lower extremities. The aim of the study was to test the RAOS for validity, reliability and responsiveness. METHODS: 119 in-patients with inflammatory joint disease (51% RA) admitted to multidisciplinary care, mean age 56 (+/-13), 73% women, mean disease duration 18 (+/-14) yr were consecutively enrolled. They all received the RAOS, the SF-36, the HAQ and four subscales of the AIMS2 twice during their stay for test of validity and responsiveness. Test-retest reliability of the RAOS questionnaire was calculated on 52 patients using the first or second administration and an additional mailed questionnaire. RESULTS: The RAOS met set criteria of reliability and validity. The random intraclass correlation coefficient (ICC 2,1) for the five subscales ranged from 0.76 to 0.92, indicating that individual comparisons were possible except for the subscale Sport and Recreation Function. Inter-item correlation measured by Cronbach's alpha ranged from 0.78 to 0.95. When measuring construct validity the highest correlations occurred between subscales intended to measure similar constructs. Change over time (24 (+/- 7) days) due to multidisciplinary care was significant for all subscales (p < 0.001). The effect sizes ranged from 0.30-0.44 and were considered small to medium. All the RAOS subscales were more responsive than the HAQ. Some of the SF-36 subscales and the AIMS2 subscales were more responsive than the RAOS subscales. CONCLUSION: It is possible to adapt already existing outcome measures to assess other groups with musculoskeletal difficulties in the lower extremity. The RAOS is a reliable, valid and responsive outcome instrument for assessment of multidisciplinary care. To fully validate the RAOS further studies are needed in other populations.