Jackie Hill

Patient satisfaction in a nurse-led rheumatology clinic

Patient satisfaction with a nurse-led rheumatology clinic was tested using the Leeds Satisfaction Questionnaire (LSQ), which was specially developed and shown to be both reliable (Cronbachs alpha, 0.96) and stable (test-re-test r= 0·83). A total of 70 patients with rheumatoid arthrists, aged 22–75 years were randomly allocated to either a nurses or a rheumatologists clinic and seen on six occasions over a year. They completed the LSQ on entry and there were no significant differences between them. By week 48 the medical cohort showed significantly increased satisfaction with access and continuity (P < 0.05) but no change in overall satisfaction. The patients in the nurse-led clinic recorded significant increases in overall satisfaction and in all subscales (P < 0.0001). Between-group comparison at week 48 showed the nurses patients to be significantly more satisfied than those of the rheumatologist.

EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis

Objectives The authors aim to develop European League Against Rheumatism recommendations for the role of the nurse in the management of patients with chronic inflammatory arthritis, to identify a research agenda and to determine an educational agenda. Methods A task force made up of a multidisciplinary expert panel including nurses, rheumatologists, occupational therapist, physiotherapist, psychologist, epidemiologist and patient representatives, representing 14 European countries, carried out the development of the recommendations, following the European League Against Rheumatism standardised operating procedures. The task force met twice. In the first meeting, the aims of the task force were defined, and eight research questions were developed. This was followed by a comprehensive, systematic literature search. In the second meeting, the results from the literature review were presented to the task force that subsequently formulated the recommendations, research agenda and educational agenda. Results In total, 10 recommendations were formulated. Seven recommendations covered the contribution of nurses to care and management: education, satisfaction with care, access to care, disease management, psychosocial support, self-management and efficiency of care. Three recommendations focused on professional support for nurses: availability of guidelines or protocols, access to education and encouragement to undertake extended roles. The strength of the recommendations varied from A to C, dependent on the category of evidence (1A–3), and a high level of agreement was achieved. Additionally, the task force agreed upon 10 topics for future research and an educational agenda. Conclusion 10 recommendations for the role of the nurse in the management of chronic inflammatory arthritis were developed using a combination of evidence-based and expert consensus approach.

The outcome and cost-effectiveness of nurse-led care in people with rheumatoid arthritis: a multicentre randomised controlled trial

Objective To determine the clinical effectiveness and cost-effectiveness of nurse-led care (NLC) for people with rheumatoid arthritis (RA). Methods In a multicentre pragmatic randomised controlled trial, the assessment of clinical effects followed a non-inferiority design, while patient satisfaction and cost assessments followed a superiority design. Participants were 181 adults with RA randomly assigned to either NLC or rheumatologist-led care (RLC), both arms carrying out their normal practice. The primary outcome was the disease activity score (DAS28) assessed at baseline, weeks 13, 26, 39 and 52; the non-inferiority margin being DAS28 change of 0.6. Mean differences between the groups were estimated controlling for covariates following per-protocol (PP) and intention-to-treat (ITT) strategies. The economic evaluation (NHS and healthcare perspectives) estimated cost relative to change in DAS28 and quality-adjusted life-years (QALY) derived from EQ5D. Results Demographics and baseline characteristics of patients under NLC (n=91) were comparable to those under RLC (n=90). Overall baseline-adjusted difference in DAS28 mean change (95% CI) for RLC minus NLC was −0.31 (−0.63 to 0.02) for PP and -0.15 (−0.45 to 0.14) for ITT analyses. Mean difference in healthcare cost (RLC minus NLC) was £710 (−£352, £1773) and −£128 (−£1263, £1006) for PP and ITT analyses, respectively. NLC was more cost-effective with respect to cost and DAS28, but not in relation to QALY utility scores. In all secondary outcomes, significance was met for non-inferiority of NLC. NLC had higher ‘general satisfaction’ scores than RLC in week 26. Conclusions The results provide robust evidence to support non-inferiority of NLC in the management of RA. Trial registration ISRCTN29803766

The effectiveness of nurse-led care in people with rheumatoid arthritis: A systematic review

OBJECTIVES The objective of this systematic review was to determine the effectiveness of nurse-led care in rheumatoid arthritis. DESIGN Systematic review of effectiveness. DATA SOURCES Electronic databases (AMED, CENTRAL, CINAHL, EMBASE, HMIC, HTA, MEDLINE, NHEED, Ovid Nursing and PsycINFO) were searched from 1988 to January 2010 with no language restrictions. Inclusion criteria were: randomised controlled trials, nurse-led care being part of the intervention and including patients with RA. REVIEW METHODS Data were extracted by one reviewer and checked by a second reviewer. Quality assessment was conducted independently by two reviewers using the Cochrane Collaborations Risk of Bias Tool. For each outcome measure, the effect size was assessed using risk ratio or ratio of means (RoM) with corresponding 95% confidence intervals (CI) as appropriate. Where possible, data from similar outcomes were pooled in a meta-analysis. RESULTS Seven records representing 4 RCTs with an overall low risk of bias (good quality) were included in the review. They included 431 patients and the interventions (nurse-led care vs usual care) lasted for 1-2years. Most effect sizes of disease activity measures were inconclusive (DAS28 RoM=0.96, 95%CI [0.90-1.02], P=0.16; plasma viscosity RoM=1 95%CI [0.8-1.26], p=0.99) except the Ritchie Articular Index (RoM=0.89, 95%CI [0.84-0.95], P<0.001) which favoured nurse-led care. Results from some secondary outcomes (functional status, stiffness and coping with arthritis) were also inconclusive. Other outcomes (satisfaction and pain) displayed mixed results when assessed using different tools making them also inconclusive. Significant effects of nurse-led care were seen in quality of life (RAQoL RoM=0.83, 95%CI [0.75-0.92], P<0.001), patient knowledge (PKQ RoM=4.39, 95%CI [3.35-5.72], P<0.001) and fatigue (median difference=-330, P=0.02). CONCLUSIONS The estimates of the primary outcome and most secondary outcomes showed no significant difference between nurse-led care and the usual care. While few outcomes favoured nurse-led care, there is insufficient evidence to conclude whether this is the case. More good quality RCTs of nurse-led care effectiveness in rheumatoid arthritis are required.

Measuring educational needs among patients with rheumatoid arthritis using the Dutch version of the Educational Needs Assessment Tool (DENAT)

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.

The prevalence of foot ulceration in patients with rheumatoid arthritis

OBJECTIVE To establish the prevalence of foot ulceration in patients with rheumatoid arthritis (RA) in secondary care. METHODS A postal survey of all patients with RA (n = 1,130) under the care of rheumatologists in Bradford, West Yorkshire, UK was performed. The prevalence data were validated through clinical examination, case-note review, and contact with health professionals. The false-negative rate was investigated in a subsample of patients (n = 70) who denied any history of ulceration. RESULTS The postal survey achieved a 78% response rate. Following validation, the point prevalence of foot ulceration was 3.39% and the overall prevalence was 9.73%. The false-positive rate was initially high at 21.21%, but use of diagrammatic questionnaire data to exclude leg ulceration reduced the rate to 10.76%. The false-negative rate was 11.76%. The most common sites for ulceration were the dorsal aspect of hammer toes, the metatarsal heads, and the metatarsophalangeal joint in patients with hallux abducto valgus, with 33% of patients reporting multiple sites of ulceration. Patients with open-foot and healed-foot ulceration had significantly longer RA disease duration, reported significantly greater use of special footwear, and had a higher prevalence of foot surgery than ulcer-free patients. CONCLUSION Foot ulceration affects a significant proportion of patients with RA. Further work is needed to establish risk factors for foot ulceration in RA and to target foot health provision more effectively.

Cross-cultural validation of the Educational Needs Assessment Tool in RA in 7 European countries

BackgroundThe 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.MethodsThe ENAT was translated into Dutch, Finnish, Norwegian, Portuguese, Spanish and Swedish versions by using Beatons 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.ResultsIndividual 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 models 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.ConclusionThe 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.

Effects of needs-based patient education on self-efficacy and health outcomes in people with rheumatoid arthritis: a multicentre, single blind, randomised controlled trial

Objectives The Educational Needs Assessment Tool (ENAT) is a self-completed questionnaire, which allows patients with arthritis to prioritise their educational needs. The aim of this study was to evaluate the effects of needs-based patient education on self-efficacy, health outcomes and patient knowledge in people with rheumatoid arthritis (RA). Methods Patients with RA were enrolled into this multicentre, single-blind, parallel-group, pragmatic randomised controlled trial. Patients were randomised to either the intervention group (IG) where patients completed ENAT, responses of which were used by the clinical nurse specialist to guide patient education; or control group (CG) in which they received patient education without the use of ENAT. Patients were seen at weeks 0, 16 and 32. The primary outcome was self-efficacy (Arthritis Self Efficacy Scale (ASES)-Pain and ASES-Other symptoms). Secondary outcomes were health status (short form of Arthritis Impact Measurement Scale 2, AIMS2-SF) and patient knowledge questionnaire-RA. We investigated between-group differences using analysis of covariance, adjusting for baseline variables. Results A total of 132 patients were recruited (IG=70 and CG=62). Their mean (SD) age was 54 (12.3) years, 56 (13.3) years and disease duration 5.2 (4.9) years, 6.7 (8.9) years for IG and CG, respectively. There were significant between-group differences, in favour of IG at week 32 in the primary outcomes, ASES-Pain, mean difference (95% CI) −4.36 (1.17 to 7.55), t=−2.72, p=0.008 and ASES-Other symptoms, mean difference (95% CI) −5.84 (2.07 to 9.62), t=−3.07, p=0.003. In secondary outcomes, the between-group differences favoured IG in AIMS2-SF Symptoms and AIMS2-SF Affect. There were no between-group differences in other secondary outcomes. Conclusions The results suggest that needs-based education helps improve patients’ self-efficacy and some aspects of health status. Trial registration number ISRCTN51523281.

Assessing the effect of fibromyalgia on patients' sexual activity.

Aims The primary aim of this study was to investigate whether a questionnaire developed for patients with rheumatoid arthritis (RA) could also be used with patients who have fibromyalgia. A secondary aim was to assess the impact of fibromyalgia on sexuality. Method In the first of two phases the face and content validity of a sexuality questionnaire already being used in patients with RA were assessed in a qualitative, audio-taped, interview study of five patients with fibromyalgia. The second phase consisted of a self-report questionnaire distributed to 60 patients with fibromyalgia. Findings The interview data confirmed that the content of the RA sexuality questionnaire was relevant to patients with fibromyalgia. A total of 43 (72%) questionnaires were returned and, of these, 41 (95%) were usable. Patients reported that fibromyalgia had altered their sexual relationship. They cited pain, stiffness, fatigue, reduced sexual drive and the impact of drug therapy as the main reasons. Conclusion The symptoms associated with fibromyalgia had a negative effect on sexual enjoyment. The questionnaire appears to be useful in addressing sexuality in patients with fibromyalgia.

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 χ2 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 χ2 p>0.18) in all pooled disease group datasets except OA (χ2=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.