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.

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.

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.

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.

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.

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.

Locating the evidence base for musculoskeletal nursing: an overview of the rheumatology nursing literature.

The main aim of this study was to locate and classify publications, particularly research publications, produced by nurses working and/or researching in the area of rheumatology in order to develop a research strategy for a newly established academic and clinical nursing unit. Database searches were undertaken to identify journal articles. Theses, dissertations, research reports, conference abstracts and books were also included in the study. The publications once located were entered into a Reference Manager electronic database and the facilities of this package were used to analyse and classify the data. The findings of the study demonstrated that over the past 40 years nurses have been steadily increasing the publication output in this area and in the last 10 years there has been a substantial increase in all publications, but particularly research and investigative articles. However there is a lack of clinical research in this area and this needs to be addressed in future as nurses develop more advanced roles in this speciality. The main limitations was the difficulty in accurately identifying nursing publications because of inadequate details of authorship.

The management of osteoarthritis and rheumatoid arthritis.

The scale of arthritis is often underestimated as the term covers about 200 different diseases. The two most common conditions are osteoarthritis and rheumatoid arthritis. Nurses' pivotal role in the care of patients with arthritis requires a combination of knowledge, understanding and expertise.

Arthritis in the older person: Part 2.

Part 1 of this article, in last month's Nursing Older People, identified the major musculoskeletal disorders affecting older people, the signs and symptoms of these and drug therapies available. Part 2 discusses non-pharmacological treatment options, patient education, multi-disciplinary support and how people living with musculoskeletal disorders can be helped to achieve quality of life

Arthritis in the older person: part 1.

Part 1 of this two-part article identifies the major musculoskeletal disorders affecting older people, the signs and symptoms of these disorders and the available drug therapies.

Clinical skills: evidence-based nursing care of people with rheumatoid arthritis.

Rheumatoid arthritis is a complex inflammatory disease with an unknown cause, uncertain prognosis and no known cure. The physical symptoms of this chronic disease can impact on the patient's psychological state and also affect the family unit and social/economic viability. Nursing patients with such a multifaceted illness is a skilled and complex task and it is imperative that the care provided is optimal, timely and underpinned by patient education. Evidence-based nursing care founded on an in-depth knowledge of the disease and its treatments will help to achieve optimal patient outcome.

An overview of education for patients with rheumatic diseases.

Patient education is central to enabling patients with rheumatic diseases to manage their lives and live as fully and independently as possible. This education can be provided in a range of formats including individual or group sessions, through an arthritis self-management programme and opportunity education, which is informally taught by health professionals. The format selected should be suitable to the individual patient at the particular time it is delivered, and the education should include both topics that health professionals know are relevant and those that patients have cited as being important to them.

The impact of rheumatoid arthritis on patients' sex lives.

Rheumatoid arthritis is a chronic systemic disease that has the potential to affect all aspects of patients' lives, including their sexual activities and relationships. This article reports on a review of the literature assessing the problems that patients experience and whether they are addressed by health professionals. The literature indicates that many patients experience problems and that symptoms such as fatigue and pain impact negatively on sexual function. Some relationships suffer as a result but most partners are sympathetic. Poor communication between patient and health professionals is a common problem that needs to be addressed.

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.

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.