Rheumatology Nurses Research Articles

Comorbidités dans le rhumatisme psoriasique : comment les évaluer en pratique ?

Psoriatic arthritis is a heterogeneous disease including various rheumatologic and skin manifestations. Frequent comorbidities contribute to impaired quality of life and increased morbidity and mortality. Metabolic and cardiovascular comorbidities, represented by cardiovascular diseases, metabolic syndrome, type 2 diabetes and non-alcoholic fatty liver disease, account for a considerable burden. Beyond the role of inflammation in the development of cardiovascular diseases during chronic inflammatory rheumatic diseases, adipose tissue and the production of adipokines may play a critical role. Moreover, anxiety, depression, and fibromyalgia are also major comorbidities that need to be addressed. Recommendations for the management of comorbidities common to chronic inflammatory rheumatic diseases (cancers, infections) have been proposed and are now part of good practice. Fewer studies have addressed emerging comorbidities (sleep apnea syndrome, chronic obstructive bronchitis, sexual dysfunction) and they will require a better evaluation to improve the holistic management of patients. Systematic screenings and management recommendations have been found to be useful for patients but raise the question of implementation of recommendation and clinical inertia. The involvement of rheumatology nurses and the development of advanced practice nurses are important issues for improving prevention and overall management of patients with chronic diseases.

Self-risk assessment for patients with rheumatic disease during the COVID-19 pandemic.

Self-risk assessment for patients with rheumatic disease during the COVID-19 pandemic.

OP0257-PARE USING PATIENT HEALTH LITERACY PROFILES TO IDENTIFY SOLUTIONS TO CHALLENGES FACED IN RHEUMATOLOGY CARE

Background:The prevalence of limited health literacy (i.e. cognitive and social resources of individuals to access, understand and apply health information to promote and maintain good health) in the Netherlands is estimated to be over 36% [1]. Access to and outcomes of rheumatological care may be compromised by limited patient health literacy, yet little is known about how to address this, thus action is required. As influencing individual patients’ health literacy in the rheumatology context is often unrealistic, it is paramount for the health system to be tailored to the health literacy needs of its patients. The OPtimising HEalth LIteracy and Access (Ophelia) process offers a method to inform system change [2].Objectives:Following the Ophelia approach:a. Identify health literacy profiles reflecting strengths and weaknesses of outpatients with RA, SpA and gout.b. Use the health literacy profiles to facilitate discussions on challenges for patients and professionals in rheumatological care and identify possible solutions the health system could offer to address these challenges.Methods:Patients with RA, SpA and gout attending outpatient clinics in three centres in the Netherlands completed the Health Literacy Questionnaire (HLQ) and questions on socio-demographic and health-related characteristics. Hierarchical cluster analysis using Ward’s method identified clusters based on the nine HLQ domains. Three researchers jointly examined 24 cluster solutions for meaningfulness by interpreting HLQ domain scores and patient characteristics. Meaningful clusters were translated into health literacy profiles using HLQ patterns and demographic data. A patient research partner confirmed the identified profiles. Patient vignettes were designed by combining cluster analyses results with qualitative patient interviews. The vignettes were used in two two-hour co-design workshops with rheumatologists and nurses to discuss their perspective on health literacy-related challenges for patients and professionals, and generate ideas on how to address these challenges.Results:In total, 895 patients participated: 49% female, mean age 61 years (±13.0), 25% lived alone, 18% had a migrant background, 6.6% did not speak Dutch at home and 51% had low levels of education. Figure 1 shows a heat map of identified health literacy profiles, displaying the score distribution per profile across nine health literacy domains. Figure 2 shows an excerpt of a patient vignette, describing challenges for a patient with profile number 9. The workshops were attended by 7 and 14 nurses and rheumatologists. Proposed solutions included health literacy communication training for professionals, developing and improving (visual) patient information materials, peer support for patients through patient associations or group consultations, a clear referral system for patients who need additional guidance by a nurse, social worker, lifestyle coach, pharmacist or family doctor, and more time with rheumatology nurses for target populations. Moreover, several system adaptations to the clinic, such as a central desk for all patient appointments, were proposed.Conclusion:This study identified several distinct health literacy profiles of patients with rheumatic conditions. Engaging with health professionals in co-design workshops led to numerous bottom-up ideas to improve care. Next steps include co-design workshops with patients, followed by prioritising and testing proposed interventions.

The Asia-Pacific Initiative for Rheumatology Nurse Education: Current gaps, programme development and future outlook.

No abstract available Keywords: Asia Pacific; nurse education; rheumatology; rheumatology nurse.

P99 National competency framework for rheumatology nurse specialists

Abstract Background The first edition of the RCN Competency Framework for Rheumatology Nurse Specialists (RNS) will be published in February 2019. The role of the RNS is highly complex and several issues have driven the need for this work. The importance of RNS was highlighted by the National Rheumatoid Arthritis Society (NRAS 2017). The British Society for Rheumatology (BSR) outlined the need for education, training supervision and work force development. There are no overarching paediatric rheumatology nurse competencies other than the biologic competencies (BSPAR 2019). Education for rheumatology nurses is not currently centralised but is key to improving skills and developing our workforce for the future improving services. Both RNS and rheumatologists are in short supply resulting in problems of access to services and delays in care (BSR 2019). In all four UK nations the titles of RNS roles and proficiency vary greatly (Titrate trial 2019) which is likely to have an impact on patient experience and outcomes. The European League Against Rheumatism (EULAR) developed recommendations for the role of the RNS in the management of chronic inflammatory arthritis which were recently updated (Bech et al, 2019). They outline three key overarching principles and 8 key recommendations. This framework maps all of these requirements. Methods Online data sources were searched for the most relevant and current evidence. Where research evidence wasn’t available, existing and new knowledge was utilised from a consensus of clinical expert and patient opinions, several rounds of consensus discussions took place virtually and face to face. RCN Rheumatology Nurse Forum Workshop attendees in June 2019 also answered a questionnaire to elicit views and demographic information regarding roles. Results The workshop questionnaire results demonstrated 100% (n37) agreement with the development of the framework and that only 2 respondents had completed a competency process. 60% were RNS. Of these 52% (n13) were band 6, 47% (n9) were band 7, and 1% were band 8 consultant nurses. The questionnaire highlighted the need to develop the framework. Results were fed back to the working party to inform the domains to be included. Conclusion We will launch the document at BSR 2020 having successfully submitted a session proposal and also hope to disseminate updates on the impact of the document at subsequent events. Evaluation will begin with a call for expressions of interest. We will use 4 pilot sites (in all 4 nations) designing a questionnaire. We measure dissemination success using a variety of methods including membership Facebook pages and the questionnaire at point of download request. We will measure where and how the competency is being used and adoption of the framework throughout the UK at 6 -12 months from the launch. We hope this abstract submission will increase dissemination opportunities. Disclosures D.I. Finney Honoraria; DF has received an honorarium for presenting at a symposium. L. Parker None. H. Smith None. L. Howie None. T. Cornell Corporate appointments; Trish Cornell is a consultant nurse working for Abbvie ltd. J. Begum None. P. Livermore None. R. Wyllie None.

P04 A quality improvement initiative to improve influenza and pneumococcal vaccination rates in patients receiving biological DMARDS (bDMARDs) in the mid-west of Ireland

Abstract Background bDMARDs have been the panacea for rheumatic diseases but their use may increase the risk of infection. Morbidity and mortality in patients with chronic disease can be prevented with influenza and pneumococcal (PCV) vaccinations. Methods We implemented a multifaceted quality improvement (QI) approach at our infusion unit using the Plan-Do-Study-Act methodology. Interventions included training of rheumatology nurses, individual patient consultations and distribution of Arthritis UK booklet on vaccination. During the first cycle, patients on bDMARDs attending the rheumatology infusion unit between January to April 2018 were recruited. Initial data included patients’ demographics, diagnosis, bDMARD, their influenza and PCV vaccination statuses with reasons for not having vaccination. The second cycle was carried out from January to April 2019. Results 92 patients were recruited in the first cycle; mean age was 53.2 years with 63 (68.5%) females. The uptake of vaccination was 52 (56.5%) for influenza and 31 (33.7%) for PCV. More importantly, 39 (42.4%) patients did not receive either vaccination. Of the 18 (19.6%) patients aged ≥65 years, 5 (27.8%) received influenza vaccination alone and 8 (44.4%) received both. The most common diagnosis from our cohort was rheumatoid arthritis (37%), followed by spondylarthritis (13%), Behçet’s disease (9.8%) and others (40.2%). 48 (52.2%) were on rituximab, 37 (40.2%) on infliximab, 6 (6.5%) were on tocilizumab and 1 (1.1%) was on abatacept. 40 (43.5%) who did not receive the influenza vaccination stated that they were either unaware (45%), uninterested (25%), afraid of SEs (12.5%), forgotten (5%), unaware it was recommended (5%). Of the 61 (66.3%) patients who did not receive the PCV, 44 (72.1%) were unaware of its availability, 6 (9.8%) were uninterested, 8 (13.2%) were fearful of side effects (SEs) and 3 (4.9%) were unaware it was recommended. Patients who did not have vaccination were interviewed again during second cycle after QI interventions. There was satisfactory improvement in the vaccination rate of influenza vaccination (71.7%) and PCV (56.5%). The most common reason for the lack of vaccination were fear of SEs for influenza vaccination and unaware of its availability for PCV. 6 (9.7%) had serious infections in the preceding year requiring hospital admission; 3 had chest infections, 1 had urinary tract infection, 1 had cellulitis and 1 had necrotising fasciitis. Conclusion Although the baseline vaccination rate was suboptimal in our cohort, there was a significant improvement after the QI interventions. The lack of awareness is the main reason for failure to be vaccinated. There is a need of a more robust action plan involving both the rheumatology team and primary care physicians to ensure adequate vaccination in immunocompromised patients. In the next step, we also aim to implement these QI interventions to the immunocompromised patients attending outpatient clinics. Disclosures W. Ng None. A. Anjum None. A. Sebastian None. J. Devlin None. A. Fraser None.

P94 Development of a methotrexate digital media card and methotrexate website

Abstract Background Methotrexate (MTX) remains the standard treatment for inflammatory arthritis. For patients prescribed MTX they tell us that they find it difficult to source correct information. Patients require this at different time points in their disease and in different formats that encompass literacy and language challenges. Patients are usually given instruction about MTX at the time of their diagnosis when they are faced with absorbing a lot of information in a very short time frame, yet the majority of patients are required to take MTX for the duration of their disease. Methods Following on from the development of the MTX patient education guide in Ireland in 2017 we looked at developing the content into a different format. In partnership with a digital media company and the pharmaceutical industry the content was converted into a digital media card and website for use in the clinical setting. The content was designed as an additional support to patients prescribed MTX. The animation consists of both audio and images and provides the viewer with essential information and key messages required when taking MTX. The animation guides the patient through MTX, outlines how it works, how to take MTX, and highlights the important safety issues and monitoring required when taking MTX. Audio content was written by the author and designed in collaboration with a digital media company. The digital media card and website was launched nationally in September 2018 with the support of the Irish Rheumatology Nursing Forum and Arthritis Ireland. Rheumatology departments nationally were provided with copies of the digital media card and details of the website. Patients can use the digital media card and be signposted patients to www.methotrexate.ie. Results Since the launch of both the website and the digital media card there has been 1.5 K sessions, and 1.4K users on the website. The website has been accessed globally with over 781 users from Ireland, 220 from the United States and 144 from the United Kingdom. The website is accessed predominately by mobile device followed by tablet device. Conclusion To date the website continues to be accessed by patients and we have received very positive feedback. The digital media card has been adopted nationally and has become incorporated as part of the education of patients about MTX. Both the website and the digital media card are designed to support and enhance the education about MTX and not replace the formal education that nurses give to patients about MTX. The next step is to survey both the patients and healthcare professionals using the tools and identify what additions may enhance these tools. For further information go to www.methotrexate.ie to access the website and view the animation. Disclosures U.E.S. Martin Honoraria; U.M has received honoraria from Novartis, Abbvie Ireland. Grants/research support; U.M has received educational grants from Novartis, Janssen, Abbvie, Pfizer.

The value, impact and role of nurses in rheumatology outpatient care: Critical review of the literature.

As rheumatology nurses make substantial contributions to intensive management programmes following 'treat to target' principles of people with rheumatoid arthritis (RA), there is a need to understand the impacts of their involvement. A structured literature review was undertaken of qualitative studies, clinical trials and observational studies to assess the impacts of rheumatology nurses on clinical outcomes and the experiences of patients with RA and to examine the skills and training of the nurses involved. A structured literature review was conducted to examine the value, impact and professional role of nurses in RA management. The literature search identified 657 publications, and 20 of them were included comprising: seven qualitative studies (242 patients), nine trials (a total of 2,440 patients) and four observational studies (1,234 patients). In clinical trials, nurses achieved similar patient clinical outcomes to doctors, and nurses also enhanced patients' satisfaction of received care and self-efficacy. In the qualitative studies reviewed, the nurses increased patients' knowledge and promoted their self-management. The observational studies studied examined found that nursing care led to improved patients' global functioning. The nurses in the various studies had a wide range of titles, experiences and training. Our structured literature review provides strong evidence that rheumatology nurses are effective in delivering care for RA patients. However, their titles, experience and training were highly variable. There is a convincing case to maintain and extend the role of nurses in managing RA, but further work is needed on standardisation of their titles and training.

Nurse-led care versus physician-led care in the management of rheumatoid arthritis and psoriatic arthritis (StaerkeR): study protocol for a multi-center randomized controlled trial

BackgroundIn Germany, the care of patients with inflammatory arthritis could be improved. Although specialized rheumatology nurses could take over substantial aspects of patient care, this hardly occurs in Germany. Thus, the aim of the study is to examine structured nursing consultation in rheumatology practices.Methods/designIn total, 800 patients with a stable course of rheumatoid arthritis or psoriatic arthritis in 20 centers in North Rhine–Westphalia and Lower Saxony will be randomized to either nurse-led care or standard care. Participating nurses will study for a special qualification in rheumatology and trial-specific issues. It is hypothesized that nurse-led care is non-inferior to standard care provided by rheumatologists with regard to a reduction of disease activity (DAS28) while it is hypothesized to be superior regarding changes in health-related quality of life (EQ-5D-5L) after 1 year. Secondary outcomes include functional capacity, patient satisfaction with treatment, and resource consumption.DiscussionSince there is insufficient care of rheumatology patients in Germany, the study may be able to suggest improvements. Nurse-led care has the potential to provide more efficient and effective patient care. This includes a more stringent implementation of the treat-to-target concept, which may lead to a higher percentage of patients reaching their treatment targets, thereby improving patient-related outcomes, such as quality of life, functional capacity, and participation. Additionally, nurse-led care may be highly cost-effective. Finally, this project may form the basis for a sustainable implementation of nurse-led care in standard rheumatology care in Germany.Trial registrationGerman Clinical Trials Register, DRKS00015526. Registered on 11 January 2019.

Development of ReproKnow, a reproductive knowledge assessment for women with rheumatic diseases

BackgroundThe objective of this study was to develop an assessment tool, ReproKnow, to evaluate the reproductive health knowledge of women with a wide range of rheumatic diseases.MethodsThe 10-item multiple-choice questionnaire was developed with feedback from a panel of content experts and female patients with rheumatic diseases. Construct validity using known-groups analysis was evaluated through comparison of median total ReproKnow scores between rheumatology fellows and nurses. Female patients aged 18–50 years were recruited to take ReproKnow and demographic questionnaires in two outpatient clinics. Associations between patients’ mean total knowledge scores and demographic characteristics were assessed using independent-sample t-tests. Questions were also categorized by topical area, and the percentages were calculated.ResultsThe completion rate of questions in ReproKnow was 100% across all users. Median ReproKnow scores were significantly higher among rheumatology fellows than among nurses (p = 0.045). The 153 patients recruited to the study had at least one of 15 rheumatic diseases. Patients’ mean knowledge score was 5.05 (SD 2.24) out of a possible high score of 10. Patients who were younger, White, and more educated had significantly higher scores than did other patients (p’s < 0.05). Patients who bore children after their disease diagnosis had higher knowledge scores than did women whose children were born prior to their diagnosis; in contrast, women with histories of surgical sterilization or hysterectomy had lower knowledge scores than other women. Knowledge scores of women who used potentially fetotoxic medications did not vary from the remainder of the sample. Patients demonstrated gaps in knowledge about birth outcomes, contraceptive efficacy, and breastfeeding safety.ConclusionsInitial testing of ReproKnow suggests that it may be a promising tool to assess the reproductive health knowledge of women with diverse rheumatic diseases. Specific knowledge deficits elicited from ReproKnow may be important targets for future educational interventions.

Training and delivery of a novel fatigue intervention: a qualitative study of rheumatology health-care professionals' experiences.

ObjectivesSuccessful, non-pharmacological research interventions are challenging to implement in clinical practice. The aim of the study was to understand the experiences of rheumatology nurses and occupational therapists (tutors) delivering a novel fatigue intervention in a trial setting, and their views on requirements for clinical implementation. After training, tutors delivered courses of a manualized group cognitive-behavioural intervention to patients with RA in a seven-centre randomized controlled trial [Reducing Arthritis Fatigue by clinical Teams using cognitive-behavioural approaches (RAFT)], which demonstrated reduced fatigue impact at 2 years.MethodsFourteen tutors participated in interviews, and eight tutors also participated in a focus group. Data were audio-recorded, transcribed and analysed using inductive thematic analysis.ResultsThe following five main themes were identified: ‘exciting but daunting’ reflected the mixture of excitement and anxiety in intervention training and delivery; ‘skills practice and demonstrations were essential’ captured the value of learning and practising together, even though the process could be uncomfortable; ‘an individual approach to a standardized intervention’ showed how tutors negotiated adherence to the manual with delivery using their own words; ‘becoming a better practitioner’ described how participation enhanced tutors’ wider clinical practice; and ‘pragmatic and flexible’ highlighted practical adaptations to facilitate training and intervention roll out.ConclusionThese insights inform strategies for clinical implementation of an evidence-based intervention that addresses a patient priority, with implications for other successful research interventions. Tutors believed that the skills acquired during RAFT enhanced their wider clinical practice, which highlights the benefits of upskilling members of clinical teams to provide self-management support to patients.

A nurse-led rheumatology telephone advice line: service redesign to improve efficiency and patient experience.

nurse-led telephone advice line (TAL) services have been endorsed by the Royal College of Nursing (RCN) and provide patients and their carers with expert advice and self-management strategies. Identified helpline shortfalls in one rheumatology TAL included a high number of inappropriate calls, calls not recorded in patients' records, and no formal process for assigning calls to nurses. Using RCN guidelines, the service was redesigned by specialist rheumatology nurses to address these issues. troubleshooting sessions were used to identify solutions to shortcomings in the helpline processes. Following service redesign, nurse/user feedback was collated, and efficiency savings achieved from reducing face-to-face appointments were calculated. the new TAL received fewer inappropriate calls, was received positively by staff and patients, and saved approximately £354 890 a year for the local clinical commissioning group. rheumatology nurses successfully improved a TAL using RCN guidance. The approach could be used by other trusts to improve patient helplines and contribute to the NHS drive for efficiency.

An exploration of the experiences of rheumatology nurses counselling patients on methotrexate therapy.

Methotrexate is commonly used to treat patients with inflammatory arthritis. A key role of a rheumatology nurse is to educate patients on how to take this drug safely prior to the commencement of treatment. The objective of the present study was to explore the experiences of rheumatology nurses conducting this role, focusing on the content of the consultation and training received to perform the role. A qualitative phenomenological approach was used. Six semi-structured interviews were performed with nurses from two hospitals who regularly counsel patients prior to starting methotrexate. The interviews were thematically analysed by two researchers and themes extracted. Four main themes were identified: (a) using written information to structure the content of the consultation; (b) patients have different information needs; (c) time pressures; and (d) training and evolution of practice. All participants described a lack of confidence when they first started counselling patients commencing methotrexate, with a wide variation in training. Participants reported that patients required different information depending on whether they were commencing this agent on its own or in combination with other drugs. All participants experienced some time pressure. Participants reported that the majority of the consultation focused on conveying information, with little opportunity for patient interaction and questions. We suggest that there is a clear need for further exploration of these consultations, to identify possible training needs. Participants also used standard written information to guide both the structure and content of the consultation limiting patients'; opportunities to ask questions.

276 As a practitioner I feel enriched: rheumatology tutors’ experiences of delivering a manualised group cognitive-behavioural fatigue programme to patients with rheumatoid arthritis

Background: Reducing Arthritis Fatigue by clinical Teams using cognitive-behavioural approaches (RAFT) is a seven-centre RCT of a manualised group cognitive-behavioural (CB) programme to reduce fatigue impact. After four days training plus a delivery observed by clinical supervisors, tutor pairs (rheumatology nurses and occupational therapists (OTs)) delivered the programme four times to patients with RA. Quality assurance observations confirmed tutors used CB approaches and RAFT results show the programme reduced patients’ fatigue impact at 26 weeks. The aim of the current study was to understand tutors’ experiences of RAFT training and delivery to inform future programme roll out. Methods: 14 RAFT tutors (nine nurses; five OTs) participated in one-to-one interviews, which were audio-recorded and transcribed. Data were analysed by ED, SH, and AH using inductive thematic analysis. Results: Four main themes were identified. Theme 1: It’s quite daunting - Delivering a complex programme that was “quite different to what any of us had done before” required time and effort (“I couldn’t really make sense of it without actually doing a lot of work around it”). Initially, training with clinical supervisors (experts) who are “so good at what they do” challenged tutors’ confidence (“the anxiety is are we going to deliver it the way they did?”). Theme 2: Most useful was actually getting to practice the sessions - Tutors valued watching clinical supervisors demonstrate programme sessions during training (“professionals who have shown us how to do it”) plus the opportunity to practice themselves (“role playing the sessions was really helpful”). Theme 3: Putting it in a way that was still true to the message - the RAFT manual was “very valuable” and “it had to be adhered to”; however, tutors wrote individual crib notes (“our own manual in our own words”) to consolidate information, deepen understanding, and gain confidence. The process was supported by “positive and constructive criticism” in the observed delivery (“the supervisor kept putting us back on track”). Theme 4: As a practitioner I feel enriched - CB skills acquired during RAFT impacted tutors' wider work (“making a massive difference to my clinical practice”), and enhanced the self-management support they offered patients, including “the particular ability to draw things out from people” and “learning when to listen and stand back and try and get the patients to find the answers”. Conclusion: Initially, RAFT training and delivery were a challenge for tutors because the CB approach was a new way of working. Individually adapting RAFT manual wording plus feedback from supervisors increased tutors’ confidence. Tutors believed the CB skills acquired during RAFT enhanced their wider clinical practice and the self-management support they offered patients. Future training should include RAFT session demonstrations and skills practice for tutors, with feedback from clinical supervisors.

Development of a Scale to Evaluate Core Competencies of Rheumatology Nurse Practice

Development of a Scale to Evaluate Core Competencies of Rheumatology Nurse Practice

A national survey of nurse training: Confidence and competence in educating patients commencing methotrexate therapy.

Methotrexate is routinely used to treat active disease in inflammatory arthritis. There have previously been patient safety concerns associated with methotrexate usage in practice. Most patients commencing methotrexate treatment are seen by the rheumatology nurse, to receive education (often referred to as drug counselling) on this agent prior to starting treatment. Yet, there are no recommended criteria regarding education or experience to ensure minimum competence of the rheumatology nurse. The objectives of the present survey were, firstly, to identify the relevant training experience of rheumatology nurses who provide methotrexate education and, secondly, to explore their confidence and competence in undertaking this role. A national electronic survey of rheumatology nurses, identified via the Royal College of Nursing Rheumatology Forum, national meetings and personal contacts, in order to access nurses who counsel patients on methotrexate, was carried out. A total of 104 nurses completed the survey. Reported training was highly variable, ranging from very little to having undertaken MSc courses. Knowledge of the drug was rated as the most important requirement. Confidence was largely very good and was reported to develop with experience, with 80% of participants reporting being confident after 1 year in the role. A small number of participants (four) indicated that they were 'not at all confident'. Aspects of competence and knowledge were assessed using questions on clinical situations; knowledge appeared to be good, with the exception of a question on shingles. Confidence correlated with knowledge (r = 0.21; p = 0.05), amount of training (r = 0.24; p = 0.03) and most strongly with time in the role (r = 0.74; p = 0.00001). The amount of training correlated with confidence but not with knowledge. All participants used written information, often using more than one source, with 87% of participants favouring the Arthritis Research UK information leaflet on methotrexate. There was a wide variety of training for this role. Confidence seemed to come with experience, training and knowledge, and took many months to develop. A training package in this area may be helpful. Reassuringly, confidence and knowledge were related.

Drs. Sheth and Aggarwal reply

To the Editor: We were delighted to read the letter by Thakran, et al 1 and learn of the different interventions toward the same goals. It is impressive that the use of specialist rheumatology nurses improved the vaccination rate to 52%, which is similar to our results of 51.7%2. Specialist nurses can be helpful in clinical rheumatology practice. In general, we agree with Thakran, et al 1 regarding the risk of developing herpes zoster (HZ) with medications and their intervention of intense counseling, clarifying misconceptions, and emphasizing the importance of HZ vaccine by a specialty nurse. Such interventions are effective, but not sustainable or affordable to … Address correspondence to Dr. H. Sheth, University of Pittsburgh, Medicine, 3504 Fifth Ave., Suite 200, Pittsburgh, Pennsylvania 15217, USA. E-mail: hss2{at}pitt.edu

Patient experiences, attitudes and expectations towards receiving information about anti-TNF medication: a quantitative study

The objective of the study was to measure patient attitudes and experience of information received during drug counselling for rheumatoid arthritis (RA) medications. This is a cross-sectional UK postal questionnaire study. Three RA patient groups—disease-modifying antirheumatic drugs (DMARDs) only, first anti-tumour necrosis factor (anti-TNF) and failed anti-TNF—were sent postal questionnaires. Data on patient history/demographics, drug counselling experience, knowledge of drug side effects, attitudes to vaccinations, cancer screening and blood borne virus testing was collected; 264/679 (39%) patients responded (median age 65 years, 66% female, median disease duration 15 years). Drug information from rheumatology nurses, rheumatology doctors and information leaflets was most useful. Thirty-eight percent of respondents felt reassured by information received, but 37% felt more worried. Forty percent of participants were aware of important drug side effects. Although 42–65% of patients understood they should temporarily halt anti-TNF therapy with concurrent infection, 75% of patients recalled continuing therapy despite infection. Thirteen percent believed that all vaccinations (including travel vaccinations) were safe while taking anti-TNF. Uptake of UK cancer screening programmes was between 87 and 94%, except prostate screening (47%). Most participants were not aware that they may need to discontinue their anti-TNF if they developed cancer. The majority of participants felt neutral/reassured by the prospect of viral hepatitis (95%) and HIV (91%) testing. Although drug counselling is a well-established part of clinical care, there is potential for further improvement to ensure that patients’ knowledge empowers them to act safely. Particular areas for improvement included the following: patients halting DMARDs/anti-TNF therapy during infections, knowledge regarding vaccinations and prostate cancer screening uptake.

The Activity of Rheumatology Nurses in Spain

ObjectiveDescribe and analyze nursing activity in rheumatology. Material and methodsA cross-sectional study was performed in Spanish rheumatology departments. Results were based on surveys administered to rheumatology nurses. We included variables on socio-demographics, the setting and available resources, and the activities they carried out. Each activity was compared in terms of workplace, available resources and dedication exclusively to one field. ResultsSixty-seven surveys were collected from 57 hospitals in 17 Spanish autonomous communities. 97% of the nurses were women, with an average age of 48.9 years and an average nursing experience of 6 years. 56% of the professionals had gained their experience in outpatient clinics, 35% in day hospitals and 9% in inpatient and primary care. As for the availability of resources, 59% had their own office, 77.3% had a phone listing and 60% scheduled and conducted patient visits. Of the 19 activities included, those performed by the highest number of nurses were managing, monitoring and coordinating the use of biological drugs (90.9%), therapy monitoring (89.4%) and training patients in self-medication (89.4%).The activity in which nurses most frequently collaborated with physicians was the administration of local injections (51.5%). Other activities were teaching (50%) and research (78.8%) in their departments and studies in the nursing field (51.5%). Work in outpatient clinics vs day hospitals showed statistically significant differences for health education, nutrition, splinting and bandaging, and collaboration in ultrasound studies. ConclusionThese professionals performed a greater number of activities when they worked in outpatient clinics, had their own office and worked exclusively in rheumatology.

Survey of parent and carer experiences and expectations of paediatric rheumatology care in New South Wales.

Objective The aim of the present survey of parent and carers was to document the level of care and services currently provided to children diagnosed with rheumatic diseases (RD) in New South Wales (NSW), Australia. Methods The survey included parents and carers of children presenting to paediatric rheumatology (PR) services in NSW. Subjects attending PR clinics in both public and private settings were invited to participate in an online or paper survey. Results Overall, 148 surveys were completed. The process of obtaining the diagnosis of RD was described as being 'difficult' or 'very difficult' by 56.1% (n=83) of the surveyed cohort, and 41.2% (n=61) saw four or more different clinicians before diagnosis. Between symptom onset and final diagnosis, 42.6% (n=63) of participants reported a delay of 5 months or more, and 16.9% (n=25) waited longer than 12 months. Eventually, 91% (n=134) were referred to a paediatric rheumatologist and 63.5% (n=94) were seen within 4 weeks from initial referral. More than half the respondents felt that general practitioners (GPs) and general paediatricians were not aware of RD. Overall, respondents felt that improved knowledge of PR diseases among GPs, improved access to PR clinics, improved educational materials for patients and families, access to speciality rheumatology nurses and coordinated rheumatology teams would have significantly improved the experience of their child's disease. Conclusions Children with RD in NSW still experience significant delays from symptom onset to final diagnosis through consultations with multiple healthcare professionals. Multidisciplinary team care was not the norm for this patient group, despite established national and international management standards. What is known about the topic? Early diagnosis and management by a multidisciplinary team is the gold standard in PR management. Delays in diagnosis may significantly impair the outcomes of children diagnosed with RD, with reduced quality of life, increased pain level and worse long-term prognosis. What does this paper add? Children diagnosed with RD in NSW endure significant delays from symptom onset until a final diagnosis is made, with multiple consultations with different healthcare professionals. When the referral to PR services in NSW is made, RD children are mostly seen within 4 weeks, faster than other international standards. GPs and paediatric rheumatologists in NSW helped improve the children's and their family's experience of the diagnosis and treatment of a rheumatic condition and better informed them using appropriate educational materials. What are the implications for practitioners? This paper provides new evidence to practitioners to increase their knowledge of the current experiences and expectation of the paediatric rheumatology care in NSW.