Gaps in Perceptions of Breast Cancer Disparities among Patients, Community Members, and Providers: Educational Intervention Opportunities.

The objective of this study was to explore the reasons for breast cancer disparities among African-Americans in Nebraska., A qualitative study was conducted using interviews with 65 indi- viduals, including healthcare and public health professionals and African-American community members. African-American women, especially younger women, had a low level of awareness of breast cancer and stated that cancer screening was not a priority. Primary care providers had varying levels of knowledge about breast cancer screening guidelines and varying levels of consistency when implementing breast health education and screening. Additionally, oncologists were not aware of the extent and impact of the financial and psycho-social problems that African-American patients were experiencing. The study findings indicate the need for education and awareness building in both community members and provider groups.

Breast Cancer Survival among African-Americans Living in the Midwest: Disparities and Recommendations to Decrease Mortality.

Socioeconomic status is highly correlated with breast cancer risk and outcomes. Omaha, Nebraska has the third highest African-American poverty rate of the 100 largest U.S. metropolitan areas. Access to healthcare is a major issue in this community. This study analyzed the state cancer registry data to establish a baseline for breast cancer survivorship among African-American women in Nebraska. Specifically, the study examined the 5-year survivorship difference between African-American women and White women and the factors associated with poor survival. It was found that the 5-year survival rate for African-American women was 43% compared to 75% for White women and that this disparity persisted after taking into consideration the staging differences. The multivariable analysis results indicated that in addition to being African-American, increasing age, late-stage diagnosis, and lower socioeconomic status were factors independently associated with reduced survival in this sample. Because of the younger age at diagnosis among African-American women, we recommend that health promotion and educational programs be directed toward younger women. A significantly larger proportion of African-Americans being diagnosed at a late stage also underscores the importance of education of women of all ages. Future research should examine quality and timing of treatment as well as comorbidity issues affecting African-American women.

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.

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.

Patient education, disease activity and physical function: can we be more targeted? A cross sectional study among people with rheumatoid arthritis, psoriatic arthritis and hand osteoarthritis.

INTRODUCTION: In order to target 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. METHODS: 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. RESULTS: The sample comprised 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; 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. CONCLUSIONS: 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 could enable identification of 'intervention points', which can be ideal opportunities for effective patient education.

Efficacy of an avirulent live vaccine against Lawsonia intracellularis in the prevention of proliferative enteropathy in experimentally infected weanling foals.

OBJECTIVE: To determine the efficacy of an avirulent Lawsonia intracellularis vaccine in preventing proliferative enteropathy in weanling foals. ANIMALS: 12 healthy weanling foals. PROCEDURES: Foals were randomly assigned to a vaccinated, nonvaccinated, or control group. Vaccinated foals received an avirulent porcine L intracellularis frozen-thawed vaccine intrarectally 60 and 30 days prior to experimental challenge. On day 1, vaccinated and nonvaccinated foals were challenged via nasogastric intubation with a virulent heterologous isolate of L intracellularis. Control foals were not challenged. Clinical observation and ultrasonographic evaluation of the small intestine were performed, and body weight, serum concentration of total solids, fecal excretion of L intracellularis, and seroconversion were measured for each foal until day 56. Diseased foals were treated with antimicrobials and supportive care. RESULTS: None of the 4 vaccinated foals developed clinical disease following challenge with virulent L intracellularis. Three of 4 nonvaccinated foals developed moderate to severe clinical signs compatible with proliferative enteropathy, hypoproteinemia, and thickened small intestinal loops. Vaccinated foals had significantly less fecal shedding of L intracellularis than nonvaccinated foals. Serologic responses between vaccinated and nonvaccinated foals after challenge were similar. Control foals remained clinically unaffected with no evidence of fecal shedding and seroconversion. CONCLUSIONS AND CLINICAL RELEVANCE: Intrarectal administration of a commercial avirulent porcine vaccine against L intracellularis resulted in complete protection against proliferative enteropathy in the foals in this study and may also reduce environmental contamination with the organism on endemic farms.

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.

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

BACKGROUND: The 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. METHODS: The ENAT was translated into Dutch, Finnish, Norwegian, Portuguese, Spanish and Swedish versions by using Beaton's 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. RESULTS: Individual 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 model's expectations (X(2)=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 (X(2)=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. CONCLUSION: The 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.

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 Collaboration's 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.

A randomised, controlled study of outcome and cost effectiveness for RA patients attending nurse-led rheumatology clinics: study protocol of an ongoing nationwide multi-centre study.

BACKGROUND: The rise in the number of patients with arthritis coupled with understaffing of medical services has seen the deployment of Clinical Nurse Specialists in running nurse-led clinics alongside the rheumatologist clinics. There are no systematic reviews of nurse-led care effectiveness in rheumatoid arthritis. Few published RCTs exist and they have shown positive results for nurse-led care but they have several limitations and there has been no economic assessment of rheumatology nurse-led care in the UK. OBJECTIVE: This paper outlines the study protocol and methodology currently being used to evaluate the outcomes and cost effectiveness for patients attending rheumatology nurse-led clinics. DESIGN AND METHODS: A multi-centred, pragmatic randomised controlled trial with a non-inferiority design; the null hypothesis being that of 'inferiority' of nurse-led clinics compared to physician-led clinics. The primary outcome is rheumatoid arthritis disease activity (measured by DAS28 score) and secondary outcomes are quality of life, self-efficacy, disability, psychological well-being, satisfaction, pain, fatigue and stiffness. Cost effectiveness will be measured using the EQ-5D, DAS28 and cost profile for each centre. POWER CALCULATIONS: In this trial, a DAS28 change of 0.6 is considered to be the threshold for clinical distinction of 'inferiority'. A sample size of 180 participants (90 per treatment arm) is needed to reject the null hypothesis of 'inferiority', given 90% power. Primary analysis will focus on 2-sided 95% confidence interval evaluation of between-group differences in DAS28 change scores averaged over 4 equidistant follow up time points (13, 26, 39 and 52 weeks). Cost effectiveness will be evaluated assessing the joint parameterisation of costs and effects. RESULTS: The study started in July 2007 and the results are expected after July 2011. TRIAL REGISTRATION: The International Standard Randomised Controlled Trial Number ISRCTN29803766.

Extended roles of non-physician health professionals and innovative models of care within Europe: results from a web-based survey.

BACKGROUND AND OBJECTIVE: Due to the increasing prevalence of rheumatic diseases, extended roles of non-physician health professionals and innovative models of care may be important options in rheumatology in the future. Extended roles have been pioneered in the UK, Canada, USA and Australia and been found to be effective and safe. However, few data are available about mainland Europe, so the aim of this study was to explore the current status of the extended roles undertaken by health professionals within Europe, and the corresponding models of care used. METHODS: Non-physician health professionals from various European countries were asked to complete a web-based survey using convenience and snowball sampling techniques. Data analysis involved calculating descriptive statistics and frequencies based on the countries where the participants currently worked. RESULTS: Of the 479 health professionals who filled in the survey, 430 (92%) indicated that they were performing extended roles. Considerable differences between the 27 participating countries existed, in terms of which extended roles and which innovative models of care were being used. Barriers to performing extended roles were cited as the attitude of rheumatologists in all but eight countries, while attitudes of patients were less common barriers. Lack of knowledge, education and educational opportunities were also experienced in several countries. CONCLUSION: The present study produced the first data on extended roles for non-physician health professionals and corresponding innovative models of care in rheumatology within Europe. We recommend increasing educational opportunities, as well as developing strategies to limit the barriers experienced.

Joint approach to arthritis care. Interview by Carol Davis.

A major study comparing nurse-led and doctor-led care for patients with rheumatoid arthritis is under way.

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 longer [corrected] 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.

Do OA patients gain additional benefit from care from a clinical nurse specialist?--a randomized clinical trial.

OBJECTIVES: To assess whether OA patients attending a clinical nurse specialist (CNS) clinic gain 'additional benefit' compared with those attending a traditional junior hospital doctor (JHD) clinic. METHODS: A total of 100 patients with OA attending rheumatology clinics at a UK teaching hospital were randomly allocated to a CNS or JHD clinic and seen at 0, 16, 32 and 48 weeks. The study assessed (i) non-inferiority of the CNS with respect to clinical outcomes (pain, morning stiffness, self-efficacy, physical function and psychological status) and (ii) superiority of the CNS in terms of patient knowledge and satisfaction. RESULTS: Average pain at follow-up was lower in the CNS group: unadjusted mean difference for the JHD group minus the CNS group was 5.3 (95% CI -4.6, 15.2); adjusted was 1.6 (95% CI -5.7, 8.9). The corresponding effect size estimates were 0.20 (95% CI -0.17, 0.57) and 0.06 (95% CI -0.21, 0.33), respectively. There were similar outcomes in morning stiffness, physical function and self-efficacy. Patient knowledge and satisfaction were statistically significant at the 5% level attaining moderate to large effect sizes in favour of the CNS. CONCLUSIONS: Our findings demonstrate that the clinical outcome of CNS care is not inferior to that of JHD care, and patients attending CNS gain additional benefit in that they are better informed about their disease and significantly more satisfied with care than are their counterparts.

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.

The predictors of foot ulceration in patients with rheumatoid arthritis: a preliminary investigation.

We explored the predictors of foot ulceration in patients with rheumatoid arthritis (RA). The cases were 15 patients with RA reporting foot ulceration in response to a postal survey of patients sampled from a diagnostic register in secondary care (n = 1,130). The controls were 66 patients with RA randomly sampled from the survey respondents (n = 883) after matching for age, sex and disease duration. Patients with co-existent diabetes were excluded. Clinical examination included the assessment of known risk factors for foot ulceration in diabetes including: neuropathy (insensitivity to 10 g monofilament), peripheral vascular disease (ankle brachial pressure index [ABPI]), foot deformity (Platto indices) and raised plantar pressure (PressureStat readings). A 44 swollen-joint count, the presence of pre-ulcerative lesions and current steroid therapy were identified through univariate analysis as additional potential predictors in patients with RA. Forward step-wise logistic regression analysis showed that the following variables were significant predictors of ulceration: steroid therapy (OR = 9.70, 95%CI = 2.09-45.11, p = 0.004), abnormal ABPI (OR = 13.45, 95%CI = 1.19-151.43, p = 0.035), the presence of pre-ulcerative lesions (OR = 7.40, 95%CI = 1.51-36.30, p = 0.014) and swollen-joint count (OR = 1.25, 95%CI = 1.02-1.53, p = 0.034). Abnormal sensation, foot deformity and raised plantar pressures were not significant predictors of ulceration. The wide confidence intervals for ABPI were due to sparse data with very few abnormal values, and the results of exact logistic regression (more accurate where data is sparse and case matching employed) found that ABPI was no longer a significant predictor (p = 0.054). The significance of the other predictors did not differ substantially. In this preliminary study, abnormal sensation, foot deformity and raised plantar pressures were not significantly associated with foot ulceration but active disease and current steroid therapy were. The contribution of peripheral vascular disease to risk is unclear and further investigation is needed in a larger cohort.

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.

Patient priorities of care in rheumatology outpatient clinics: a qualitative study.

OBJECTIVE: To provide more understanding of what rheumatoid arthritis (RA) patients want and need from an outpatient visit. METHODS: 25 patients who experienced care in a nurse practitioner clinic (n = 10), junior doctor clinic (n = 9) or consultant clinic (n = 6) in a large teaching hospital in West Yorkshire were interviewed about their perceptions and experiences of care. Interviews were approximately 1 1/2 hours in duration and were carried out in a neutral environment by a research nurse. Interview data were subjected to atheoretical content analysis, which resulted in the identification of emergent themes. RESULTS: Five main themes emerged from the analysis of interview data: 1) patients want to be communicated to clearly and effectively and value positive relationships with practitioners. These help to give patients confidence in the care they are receiving; 2) patients want to feel in control of their condition and tend to refuse interventions as a way of gaining control; 3) patients want to be given clear explanations during consultations, and want information in oral and written forms; 4) patients want to be able to access practitioners between scheduled appointments as a way of gaining reassurance; and 5) patients want to feel valued by society through having their difficulties appreciated and understood by others. CONCLUSION: This research adds to the body of evidence on what patients want from their rheumatology care, and each theme has clear implications for future practice.