Nurse-led care for people with early rheumatoid arthritis: Interview study with thematic analysis.

AIMS: To develop an understanding of what comprises nurse-led care in early rheumatoid arthritis from the perspective of rheumatology nurse specialists in England. DESIGN: Qualitative study. METHODS: Semi-structured telephone interviews with rheumatology nurse specialists in England were conducted in Summer 2020. Interviews were audio-recorded, transcribed verbatim and analysed using reflexive thematic analysis. Reporting follows the appropriate elements of consolidated criteria for reporting qualitative research. RESULTS: Sixteen nurses were recruited and interviews lasted 30-60 min. Four themes with 14 subthemes were identified. A SPECIALIST SERVICE DELIVERED BY EXPERIENCED RHEUMATOLOGY NURSES: Specialist care is provided by experienced nurse specialists with a high degree of autonomy in the rheumatology multidisciplinary team context. ADDRESSING PATIENTS' COMPLEX CARE NEEDS: Care is evidence-based and aims to start treatment, keep in treatment, educate and support. Access to psychology expertise is needed. CARE WITH COMPASSION USING PERSON-CENTRED, HOLISTIC AND EMPATHETIC APPROACHES: Nurses create patient relationships and a positive therapeutic environment. Nurse-led telephone advice lines are essential for treatment adjustment, patient support and empowerment. CONTINUED EVALUATION AND DEVELOPMENT OF THE SERVICE: Consultations are reviewed, and patients are asked for feedback. The COVID-19 pandemic caused disruption, but changes streamlined procedures and improved documentation and communication. CONCLUSION: Nurse-led care in early rheumatoid arthritis is a specialist service delivered with compassion, addressing complex care needs and using person-centred approaches. This study identifies key aspects of care in early disease from the nurse perspective.

Systematic co-development and testing of a digital behaviour change intervention for osteoarthritis and physical activity: Theoretical mapping and acceptability study.

Objective: Osteoarthritis (OA) affects 8.75 million people in the UK. Physical activity (PA) is recommended as a core treatment, yet nearly half of people with OA are inactive. Accessible and user-friendly interventions are needed to motivate people with OA to be active. Digital behaviour change interventions (DBCIs) might help to support people with OA to self-manage their own levels of PA. The aim of this project was to co-develop and test a DBCI to motivate people with OA to be active. Methods: A mixed methods design was adopted to build the theoretical foundations, develop, and test a complex DBCI. Two patient research partners with lived experience of OA were recruited onto the project team to assist with intervention development, which was guided by the intervention mapping (IM) approach. Interviews and think-aloud sessions were then used to explore attitudes, values, and perceived effectiveness of the website. Results: The IM approach enabled the development of a prototype website to be illustrated in a clear and transparent way, showing a link between the practical materials adopted within the website and the theoretical constructs they were attempting to change. Potential users highlighted the importance of clear, easy-to-understand information, focusing on enjoyment and social connectedness. Conclusions: DBCI development should be based on theory, adequately described, and thoroughly tested with potential users to understand how they might choose to integrate digital interventions into everyday life.

Beliefs, motives and gains associated with physical activity in people with osteoarthritis.

OBJECTIVES: Osteoarthritis (OA) affects approximately 8.75 million people in the United Kingdom. Physical activity is recommended as a core treatment, yet 44% of people with OA are inactive. Motivation and self-efficacy for exercise are considered to be key factors contributing to sustained engagement with physical activity. The aim of this study was to explore the beliefs, motives (what an individual aims to attain through participating in physical activity) and gains (what people feel they might get from participation) associated with physical activity engagement in a group of people with OA. DESIGN AND METHOD: This study adopted a cross-sectional survey research design, using two validated questionnaires: the Exercise Motives and Gains Inventory and the Exercise Self-Efficacy Scale. RESULTS: Data were gathered from 262 people with OA between August 2015 and January 2016. Those who were most active reported higher levels of both motivation and self-efficacy and were active for enjoyment, to avoid negative health, and for health and fitness reasons. A comparison of motives and gains revealed higher gain scores for social engagement and enjoyment, compared with associated motive scores. CONCLUSION: This study provides evidence of the central role that motives, gains and self-efficacy play in facilitating engagement with physical activity in this population. Future interventions should aim to foster increased self-efficacy for physical activity and promote autonomous forms of motivation by emphasising the importance of choosing activities which are enjoyable, as well as highlighting the value of social engagement.

Sensory Function and Pain Experience in Arthritis, Complex Regional Pain Syndrome, Fibromyalgia Syndrome, and Pain-Free Volunteers: A Cross-Sectional Study.

OBJECTIVES: This study aimed to identify relationships between sensory function and pain in 3 common pain conditions (arthritis, Complex Regional Pain Syndrome [CRPS] and fibromyalgia syndrome [FMS]) and pain-free participants. Sensory abnormalities are known to be concomitant with some types of chronic pain but comparison across pain conditions using existing research is difficult due to methodological differences. Pragmatic Quantitative Sensory Testing (QST) methods were used. MATERIALS AND METHODS: Hot and cold sensitivity, light touch threshold (LTT), two-point discrimination and pain threshold were assessed in 143 participants (n=37 pain-free, n=34 arthritis, n=36 CRPS, n=36 FMS). Outcomes were assessed in the index ("affected" or right) and contralateral arm. Participants also completed the Brief Pain Inventory and the McGill Pain Questionnaire. RESULTS: There were statistically significant differences between groups for all QST outcomes except two-point discrimination. Relative to pain-free participants, FMS displayed heat hyperesthesia in both arms and cold hyperesthesia in the contralateral arm. CRPS demonstrated no changes in thermal sensitivity. Both CRPS and FMS exhibited bilateral pressure hyperalgesia. LTT hypoesthesia was observed bilaterally for CRPS but only in the contralateral arm for FMS. CRPS and FMS had pressure hyperalgesia in the index arm relative to arthritis patients. There were no differences between arthritis and pain-free participants for any QST outcome. In CRPS, there were significant correlations between LTT and pain outcomes bilaterally. DISCUSSION: People with FMS and CRPS demonstrate extensive sensory dysfunction. Arthritis patients had sensory profiles closer to pain-free participants. LTT may provide a clinically relevant and accessible assessment for CRPS.

Standards for the diagnosis and management of complex regional pain syndrome: Results of a European Pain Federation task force.

BACKGROUND: Complex regional pain syndrome is a painful and disabling post-traumatic primary pain disorder. Acute and chronic complex regional pain syndrome (CRPS) are major clinical challenges. In Europe, progress is hampered by significant heterogeneity in clinical practice. We sought to establish standards for the diagnosis and management of CRPS. METHODS: The European Pain Federation established a pan-European task force of experts in CRPS who followed a four-stage consensus challenge process to produce mandatory quality standards worded as grammatically imperative (must-do) statements. RESULTS: We developed 17 standards in 8 areas of care. There are 2 standards in diagnosis, 1 in multidisciplinary care, 1 in assessment, 3 for care pathways, 1 in information and education, 4 in pain management, 3 in physical rehabilitation and 2 on distress management. The standards are presented and summarized, and their generation and consequences were discussed. Also presented are domains of practice for which no agreement on a standard could be reached. Areas of research needed to improve the validity and uptake of these standards are discussed. CONCLUSION: The European Pain Federation task force present 17 standards of the diagnosis and management of CRPS for use in Europe. These are considered achievable for most countries and aspirational for a minority of countries depending on their healthcare resource and structures. SIGNIFICANCE: This position statement summarizes expert opinion on acceptable standards for CRPS care in Europe.

Cost-utility of maintained physical activity and physiotherapy in the management of distal arm pain: an economic evaluation of data from a randomized controlled trial.

BACKGROUND: Arm pain is common, costly to health services and society. Physiotherapy referral is standard management, and while awaiting treatment, advice is often given to rest, but the evidence base is weak. OBJECTIVE: To assess the cost-effectiveness of advice to remain active (AA) versus advice to rest (AR); and immediate physiotherapy (IP) versus usual care (waiting list) physiotherapy (UCP). METHODS: Twenty-six-week within-trial economic evaluation (538 participants aged ≥18 years randomized to usual care, i.e. AA (n = 178), AR (n = 182) or IP (n = 178). Regression analysis estimated differences in mean costs and Quality-Adjusted Life Years (QALYs). Incremental cost-effectiveness ratios (ICERs) and cost-effectiveness acceptability curves were generated. Primary analysis comprised the 193 patients with complete resource use (UK NHS perspective) and EQ-5D data. Sensitivity analysis investigated uncertainty. RESULTS: Baseline-adjusted cost differences were £88 [95% confidence interval (CI): -14, 201) AA versus AR; -£14 (95% CI: -87, 66) IP versus UCP. Baseline-adjusted QALY differences were 0.0095 (95% CI: -0.0140, 0.0344) AA versus AR; 0.0143 (95% CI: -0.0077, 0.0354) IP versus UCP. There was a 71 and 89% probability that AA (versus AR) and IP (versus UCP) were the most cost-effective option using a threshold of £20,000 per additional QALY.  The results were robust in the sensitivity analysis. CONCLUSION: The difference in mean costs and mean QALYs between the competing strategies was small and not statistically significant. However, decision-makers may judge that IP was not shown to be any more effective than delayed treatment, and was no more costly than delayed physiotherapy. AA is preferable to one that encourages AR, as it is more effective and more likely to be cost-effective than AR.

'To suddenly have a name for this thing was wonderful': the patient's experience of receiving a diagnosis of systemic lupus erythematosus.

OBJECTIVES: The aim of this study was to explore the patient's perception of receiving a diagnosis of systemic lupus erythematosus (lupus) and reports on their experience of the period between onset of symptoms and receiving a definitive diagnosis. METHODS: Focus groups were conducted in seven rheumatology centres. Forty-three participants were purposively selected and data were subjected to thematic deductive analysis. RESULTS: Focus group data generated three major themes. 'Diagnostic uncertainty and misdiagnosis' describes the frustration for many of experiencing years of often debilitating symptoms that have gone unacknowledged by health professionals and misunderstood by themselves. Some experienced the trauma of being misdiagnosed, which impacted on how they adjusted to their final diagnosis of lupus. 'Consequences of receiving a diagnosis' highlights the feelings of relief for participants at finally having a diagnosis, despite its implications. However, the manner in which this knowledge was delivered was often inappropriate and unsupported, affecting how they adjusted to future management of their condition. 'Impact on individuals' lives' explores how many felt empowered by finally receiving recognition for their symptoms, but the diagnosis of a relatively unknown condition with often invisible symptoms impacted on the response and support they received from those around them. CONCLUSION: It is essential health professionals have a greater understanding of the patient experience prior to receiving a diagnosis of lupus. The individual experience from symptom onset to diagnosis has a direct impact on the patient's subsequent acceptance of their diagnosis and response to management and therefore justifies the need for further research in this field.

Rheumatology telephone helplines: patient and health professionals' requirements.

OBJECTIVES: The aim of this study was to ascertain patients' and health professionals' requirements from a rheumatology helpline and how such a service should be delivered. METHODS: Self-completed questionnaires were administered to both users of rheumatology helplines, patients and health professionals (HPs), and providers of rheumatology services at five UK NHS trusts. Additional data were sought from experts in the field. Information was elicited on access to the service, preferred waiting time for response to a call, acceptability of an answerphone and choice of HP responding. Quantitative data were analysed using percentages and Chi-squared tests. Open questions were analysed as free text responses, and organized into clusters of themes. RESULTS: A total of 607 questionnaires were returned, 523 from users (411 patients, 112 health professionals) and 84 from providers. There were no significant differences across the five Trusts. The top six reasons for patients contacting the helpline were: advice on changes in condition, drug information, understanding symptoms, blood results, information on diagnosis, and appointment queries. All groups recommended a return call on the same day and were happy to leave an answerphone message. HP users requested additional access via e-mail and fax. Rheumatology practitioners were deemed the most appropriate personnel to staff a helpline. CONCLUSIONS: The findings of this study have contributed a valuable insight into the essential components of a rheumatology helpline service from a user and provider perspective. These data will add to existing recommendations for the management of a rheumatology helpline service and ultimately contribute to a proposal for national guidelines.

The impact of group education on participants' management of their disease in lupus and scleroderma.

OBJECTIVES: The aim of this study was to investigate the impact of the pilot education programmes, entitled 'Focus on Lupus' and 'Focus on Scleroderma', upon participants' management of their disease. METHODS: Five people with lupus and five with scleroderma were invited to take part in individual semi-structured interviews. Qualitative analysis of transcripts was performed using a framework approach. Views relating to changes in knowledge and behaviour, increased empowerment, meeting others and the format and delivery of the programmes were explored. RESULTS: Analysis of the interviews revealed overall satisfaction with both programmes, however people with lupus had more positive feelings about their attendance. Both disease groups considered it valuable to meet others with the same disease and welcomed the involvement of a patient educator within the programme planning team. The main difference between the two groups concerned behaviour change. The lupus group revealed more definite life changes. Participants unanimously regarded the format of the programme highly and most were satisfied with the content.