Patient Care Pathways for Pregnancy in Rare and Complex Rheumatic Diseases: Results From an International Survey.

OBJECTIVE: To map existing organizational care pathways in clinical centers of expertise that care for pregnant women affected by rare and complex connective tissue diseases (rcCTDs). METHODS: An international working group composed of experts in the field of pregnancy in rcCTDs co-designed a survey focused on organizational aspects related to the patient's pathway before, during, and after pregnancy. The survey was distributed to subject experts through referral sampling. RESULTS: Answers were collected from 69 centers in 21 countries. Patients with systemic lupus erythematosus and/or antiphospholipid syndrome were followed by more than 90% of centers, whereas those with disorders such as IgG4-related diseases were rarely covered. In the majority of centers, a multidisciplinary team was involved, including an obstetrician/gynecologist in 91.3% of cases and other healthcare professionals less frequently. Respondents indicated that 96% of the centers provided routine pre-pregnancy care, whereas the number of patient visits during pregnancy varied across centers. A formalized care pathway was described in 49.2% of centers, and 20.3% of centers had a predefined protocol for the monitoring of pregnant patients. Access to therapies during pregnancy also was heterogeneous among different centers. CONCLUSION: In international referral centers, a high level of care is provided to patients with rcCTDs before, during, and after pregnancy. No significant discrepancies were found between European and non-European countries. However, this work highlights a potential benefit to streamlining the care approaches across countries to optimize pregnancy and perinatal outcomes among patients with rcCTDs.

Nurses experience increased clinical and organisational competence by working with a medical quality register, RevNatus - a qualitative study.

BACKGROUND: RevNatus is a consent-based, nationwide medical quality register that collects data on patients with inflammatory rheumatic diseases during pregnancy and one year postpartum. The entering of data takes place in outpatient clinics in rheumatology wards in hospitals. The aim of this study is to explore how rheumatology nurses experience organizing and working with the medical quality register RevNatus in addition to their normal clinical patient-care tasks. METHODS: Qualitative focus group interviews and individual in-depth interviews were conducted in 2018 to gain insights into how nurses organize performing quality register work and clinical work simultaneously. Data were analysed using systematic text condensation. RESULTS: The informants represented seven different rheumatology outpatient clinics in Norway. The analyses showed that working with RevNatus increased the nurses' knowledge about pregnancy and rheumatic diseases, improved the content of their nurse consultations and found the 'register form' as a useful template to structure the nurse consultations. The nurses took the main responsibility for RevNatus, but lack of routines and uncoordinated collaboration with the rheumatologists and secretaries made the nurses spend too much time verifying the accuracy of data or post-registering missing data. CONCLUSION: The nurses experienced work with RevNatus as time-consuming, but the register work increased both their clinical and organisational competences. Routines and collaboration within the registry team are important to ensure the data quality and reduce the workload.

Rehabilitation in warm climate for young adults with inflammatory arthritis: A 12-month randomized controlled trial.

OBJECTIVES: To investigate if an intensive rehabilitation programme, including intensive exercise and patient education, for young adults with inflammatory arthritis, conducted in a warm climate, has long-term effects on general health status compared with usual care. DESIGN: Open randomized controlled trial. PATIENTS: A total of 64 patients with inflammatory arthritis, aged 20-35 years. METHODS: Patients underwent randomized allocation to an intensive 17-day rehabilitation programme in a warm climate (intervention group) or to usual care with no structured rehabilitation (control group). The primary outcomes were physical function, assessed by the "30-second Sit to Stand test"(30sSTS), and coping, measured by the "Effective Musculoskeletal Consumer Scale" (EC17). RESULTS: A total of 64 patients (mean age 27.5 years, 62.5% female) were randomized. Thirty out of 32 patients completed the intervention. At 12-month follow-up, 7 patients were lost to follow-up; 4 from the intervention group and 3 from the control group. The intervention group showed significant improvement in the physical function test at 3 months; estimated mean difference (95% confidence interval): 5.5 (2.8-8.1), 6 months 3.6 (0.4-6.8) and 12 months 4.0 (0.0-7.9), compared with the control group. There were no differences in coping between the 2 groups at 3, 6 or 12 months. CONCLUSION: Rehabilitation in a warm climate improves physical functioning, but not coping, in young adults with inflammatory arthritis.

Patient satisfaction with nursing consultations in a rheumatology outpatient clinic: a 21-month randomised controlled trial in patients with inflammatory arthritides.

OBJECTIVE: To study the effect of individual nursing consultations in patients treated with disease-modifying antirheumatic drugs (DMARDs) in a rheumatology outpatient setting. METHODS: Patients with inflammatory arthritides (IA) who had started with a DMARD regimen 3 months before were randomised to two different follow-up consultation systems: either follow-up by a clinical nurse specialist (CNS) or by a medical doctor (MD) in rheumatology 3, 9 and 21 months after randomisation. The primary outcome was patient satisfaction measured by Leeds Satisfaction Questionnaire (LSQ). Secondary outcomes included coping, disease activity, pain, fatigue, patient's global assessment of disease activity and health related quality of life. Effects at 9 and 21 months were estimated by Least Square means calculated from the final mixed model. RESULTS: Of 68 patients randomised, 65 patients completed assessments at 21 months. Statistically significant improvements in favour of the CNS group were found in all LSQ subscales (all p values<0.001) and in overall satisfaction at 9 months (adjusted mean between-group difference 0.74, 95% CI -0.96 to -0.52) and at 21 months (-0.69, 96% CI -0.87 to -0.50). Disease activity Score 28 joint count (DAS-28) was improved from baseline to 9 months in both groups and improvement was maintained at 21 months, but without any group difference. No statistically significant between-group differences were found in any of the other secondary outcomes. CONCLUSIONS: Patients with IA are likely to benefit from nurse consultations in terms of increased satisfaction with care compared with MD consultations and without loss of efficacy in terms of clinical outcomes. The study is registered as a clinical trial at the ClinicalTrials.gov (NCT00403676).

Coping with arthritis is experienced as a dynamic balancing process. A qualitative study.

The aim of this study was to investigate the process of coping in people living with chronic inflammatory arthritis. Semi-structured individual face-to-face interviews with 26 persons having rheumatoid arthritis, psoriatic arthritis or unspecified polyarthritis were performed. The informants were asked how they experienced to live with arthritis and how they coped with challenges due to the arthritis. The main finding was that the informants experienced the process of coping with arthritis as a dynamic, iterative, balancing process. They balanced between different states, entitled "go on as usual", "listen to the body", "adjustments" and "attitude towards life". The informants preferred to be in a "go on as usual" state as this was seen as normal life. However, disease fluctuations with pain, fatigue and stiffness disturbed the balance and made the informants "listen to the body", a state where they became aware of how the disease affected them, followed by the "adjustment" state. Adjustments were composed of different efforts to ease the arthritis influence and for regaining balance. The "attitude towards life" influenced the overall process of coping. A redefined view of what the informants considered to be normal life thus happened through longer periods of imbalance. The process of coping with arthritis was found to be a dynamic, iterative, balancing process where patients redefined what they considered as normal life through the course of the disease.

Performance in leisure-time physical activities and self-efficacy in females with rheumatoid arthritis.

The purpose of this study was to examine leisure-time physical activities (LTPAs) and their association with self-efficacy in females with rheumatoid arthritis (RA) (n = 238). Their self-reported performance in LTPAs was measured by the Interest Checklist and efficacy beliefs by using the Arthritis Self-Efficacy Scales (ASES). LTPAs were classified as active or less active according to how many LTPAs they performed. The participants had reduced their participation in LTPAs by almost one-third during the last year. Active individuals performed the vigorous activities more often, they had a higher level of education, were working to a significantly greater extent, and reported better function, higher scores on the self-efficacy scales, and lower joint pain and fatigue. Multivariate analyses demonstrated that a high level of LTPAs was independently related to less fatigue (OR 0.98, p = 0.004), positive self-efficacy in coping with RA functions (OR 1.03, p = 0.015), and higher employment level (OR 0.42, p = 0.039). Only a quarter of the responders were physically active in their leisure time in the present study. Less active individuals reduced their performance in LTPAs to a much higher degree than active individuals during the last year. Partaking in a high amount of LTPAs was related to less fatigue and higher efficacy beliefs.

Pregnancy outcome in patients with primary Sjögren's syndrome. a case-control study.

OBJECTIVE: To study the outcome of pregnancy in patients with primary Sjögren's syndrome (pSS). METHODS: A questionnaire covering demographic data and the outcome of pregnancies was answered by 58 patients with pSS and 157 controls. For 36 patients and 93 controls, we analyzed detailed data about pregnancy, birth, and status of the newborn from the Medical Birth Registry of Norway (MFR) for birth order one, 2, and 3. Thirty-two of 36 patients registered in MFR were diagnosed with pSS after the last birth. RESULTS: Pregnancy outcomes were not different in patients compared to controls. Two patients (3.4%) reported giving birth to a child with congenital heart block. CONCLUSION: PSS had no impact on pregnancy outcome before disease onset. The most important condition associated with pSS in anti-SSA positive mothers was congenital heart block in the offspring.

[Reversible infertility from nonsteroidal anti-inflammatory drugs]. / Reversibel infertilitet ved ikke-steroide antiinflammatoriske midler.

BACKGROUND: Nonsteroidal anti-inflammatory drugs (NSAIDs) and selective cyclooxygenase-2 inhibitors may interfere with ovulation and the rupture of the follicle, causing reversible infertility. METHOD: Literature review. RESULTS: Reversible infertility is shown both in animal and human studies of these drugs. As determined by ultrasound, the drugs may delay or inhibit ovulation. These findings are also confirmed by a few randomized controlled studies showing an increase in time from the luteinizing hormone surge to rupture of the follicle and an increased size of the unruptured follicle. Most of the hormone analyses show values in accordance with the ovulation/menstrual cycle. Also, two epidemiological studies have shown an association between NSAID use and spontaneous abortion. These studies have methodological weaknesses and their findings have to be elucidated in future studies. INTERPRETATION: Women with fertility problems should avoid not only the selective cyclooxygenase-2 inhibitors, but also the traditional NSAIDs. However, women with rheumatic disease responding well to therapy should consult their physicians before stopping treatment. Reduced dose of a NSAID and temporary stop of drug treatment early in the menstrual cycle, or alternative drug treatment, may be a solution. NSAIDs should not be used in the last eight weeks of pregnancy.