“Delivering knowledge and advice”: Healthcare providers’ experiences of their interaction with patients’ management of rheumatoid arthritis

Rheumatic diseases are often chronic and involve a lifetime of suffering. The focus of rheumatology care is to support patients to manage their lives and master their disease. Healthcare providers and patients have different views on the consequences of living with rheumatic diseases and patients are reporting unmet healthcare needs. There is a need to integrate providers’ perspective to develop the quality of rheumatology care. The aim was to explore healthcare providers’ experiences of their interaction with patients in their management of RA. Interviews with 18 providers from different clinical settings were analysed in accordance with the grounded theory method. A core category; Delivering knowledge and advice was found to be the most important task and involved providing the patient with information about the disease and appropriate forms of treatment. Healthcare providers’ attitudes and patients’ responses influenced the outcome of the delivery of knowledge and advice and three dimensions emerged; completed delivery, adjusted delivery and failed delivery. There were differences in the providers’ experiences in their interaction with patients as well as in reflections on their role as the delivering part. There could be difficulties in the interaction when patients’ expectations and preferences were not taken into account when giving advice. These findings highlight the importance of developing rheumatology care, as no provider or patient benefits if the delivery of knowledge and advice becomes a failed delivery. The healthcare organization must acknowledge the difficulties involved in the interaction with patients in their management of RA and find methods to develop a more person-centred approach to care

“Striving for a Good Life” – The Management of Rheumatoid Arthritis as Experienced by Patients

Aim: To generate a theoretical model how patients experience their management of rheumatoid arthritis (RA) in everyday life.Method: An explorative design with the grounded theory approach was used by interviewing 16 informants with RA.Results: The generated theoretical model emerged in a core category- Striving for a good life with two categories; making use of personal resources and grasping for support from others, which formed the base of managing RA. When relating these categories together, four dimensions emerged which characterised patients’ different ways of managing RA: mastering, relying, struggling and being resigned.Discussion: The management of RA incorporated the use of personal resources and the grasping for support from others. Both self-management strategies and patients’ need of support were highlighted as aspects that were of importance when managing RA. Patients’ experiences of their need of support to manage RA give extended knowledge that is of importance for nurses and other healthcare providers. The relationship between patients and healthcare providers is always the key to a good encounter. Interventions to increase self-management in RA have to incorporate this knowledge when trying to increase patients’ self-efficacy and with their experience of suppor

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

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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.</p> <p>Results</p> <p>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 (X²= 977.055, DF = 351, p = 0.000, PSI = 0.976). Again, most items within domains were found to be locally dependent, significantly affecting the fit. Consequently each domain was treated as a unit (i.e. testlet) and the ENAT was re-analysed as a seven-testlet scale resulting into a good fit to the Rasch model (X²= 71.909; DF = 63; p = 0.207, PSI = 0.951). A test of strict unidimensionality confirmed that all domains contributed to measuring a single construct. Cross-cultural non-invariance was discounted by splitting domains for DIF maintaining an excellent fit to the Rasch model. This allowed calibration of the ENAT into an interval scale.</p> <p>Conclusion</p> <p>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.</p

Fatigue vid fibromyalgi - icke-farmakologiska interventioner som kan lindra

Fibromyalgi (FM) är ett tillstånd av kronisk smärta, förutom smärtan karaktäriseras sjukdomen även av sömnstörningar, extrem trötthet och kognitiva störningar. Att ständigt leva med smärta innebär en stor stressfaktor och både fysiska, psykiska och stressrelaterade symtom är vanliga. Den ständigt närvarande upplevelsen av fatigue liknar den som beskrivs vid kroniskt trötthetssyndrom. Fatigue definieras som ett tillstånd av onaturlig och onormal eller extrem trötthet i hela kroppen, som inte är relaterat till aktivitet eller ansträngning. Syftet med studien var att beskriva vilka icke-farmakologiska interventioner som förekommer för att lindra fatigue hos patienter med FM. Metoden som användes var en litteraturstudie. Tolv vetenskapliga artiklar granskades och sammanställdes. Resultatet visade att interventioner som kombinerade träning och kognitiv inriktning hade bäst effekt för att lindra fatigue under en längre tid. Vikten av tro på patientens upplevelse av både smärta och fatigue visades sig vara betydelsefullt för att komma vidare i livet. Att stödja patienten med kunskap och engagemang från flera yrkeskategorier belystes som viktiga delar i vården av patienter med FM. Vidare forskning kring teambaserad vård behövs för att tydliggöra resultatet ytterligare

Patients' and healthcare providers' experiences of the cause, management and interaction in the care of rheumatoid arthritis

Aim: The overall aim of this thesis was to explore and describe patients’ and healthcare providers’ experiences of the causes, management and interaction in the care of rheumatoid arthritis (RA). Method: The thesis is based on four studies. Studies I and II contain data from an epidemiologic project involving patients who were recently diagnosed with RA. The patients answered an open-ended question about their conception of the cause of their RA (Study I). Qualitative data from 38 patients were analysed using the phenomenographic approach in order to identify variation in conceptions. The results of Study I formed the basis for categorizing the conceptions of 785 patients in the search for patterns of background factors (Study II). Study III aimed to explore how patients experienced their management of RA in everyday life. Data were collected by interviews with 16 patients and analysed according to Grounded Theory (GT). In study IV, the aim was to explore healthcare providers’ experiences of their interaction with patients’ management of RA. Data were collected by interviews with 18 providers representing different professions and analysed using GT. Findings:  Patients’ conceptions of the cause of their RA revealed new aspects from the patient perspective that can complement pathogenetic models. Two descriptive categories emerged: consequences beyond personal control and overloaded circumstances, which included six categories of conceptions (Study I). The most common conceptions of the cause of RA were unexpected effects of events followed by work and family-related stress (Study II). Background factors that influenced the conceptions of the cause were age, sex and educational level. Patient management of RA involved using personal resources together with grasping for support from others in their striving for a good life. When linking these aspects together, four ways of management emerged: mastering, struggling, relying and being resigned (Study III). Healthcare providers’ experiences of their interaction with patients’ management shed light upon the important issue of delivering knowledge and advice. The providers’ attitudes constituted one cornerstone and patients’ responses the other. The providers reported that the interaction led to different outcomes: completed delivery, adjusted delivery and failed delivery. Conclusions: The findings contribute new knowledge from both patients’ and healthcare providers’ perspectives, which could be used to develop a more person-centred approach in rheumatology care. Person-centred care involves taking patients’ beliefs and values into account in addition to creating a trusting relationship between patient and provider. A successful person-centred approach requires an organisation that supports the person-centred framework

Fatigue vid fibromyalgi - icke-farmakologiska interventioner som kan lindra

Fibromyalgi (FM) är ett tillstånd av kronisk smärta, förutom smärtan karaktäriseras sjukdomen även av sömnstörningar, extrem trötthet och kognitiva störningar. Att ständigt leva med smärta innebär en stor stressfaktor och både fysiska, psykiska och stressrelaterade symtom är vanliga. Den ständigt närvarande upplevelsen av fatigue liknar den som beskrivs vid kroniskt trötthetssyndrom. Fatigue definieras som ett tillstånd av onaturlig och onormal eller extrem trötthet i hela kroppen, som inte är relaterat till aktivitet eller ansträngning. Syftet med studien var att beskriva vilka icke-farmakologiska interventioner som förekommer för att lindra fatigue hos patienter med FM. Metoden som användes var en litteraturstudie. Tolv vetenskapliga artiklar granskades och sammanställdes. Resultatet visade att interventioner som kombinerade träning och kognitiv inriktning hade bäst effekt för att lindra fatigue under en längre tid. Vikten av tro på patientens upplevelse av både smärta och fatigue visades sig vara betydelsefullt för att komma vidare i livet. Att stödja patienten med kunskap och engagemang från flera yrkeskategorier belystes som viktiga delar i vården av patienter med FM. Vidare forskning kring teambaserad vård behövs för att tydliggöra resultatet ytterligare

Cardiovascular risk factors in gout, psoriatic arthritis, rheumatoid arthritis and ankylosing spondylitis: a cross-sectional survey of patients in Western Sweden

Objectives We aimed to compare traditional (trad) cardiovascular risk factors (CVRFs) among patients with gout, psoriatic arthritis (PsA), rheumatoid arthritis (RA) and ankylosing spondylitis (AS) stratified by sex.Methods A survey was sent to patients with gout (n=1589), PsA (n=1200), RA (n=1246) and AS (n=1095). Patients were retrieved from Sahlgrenska University Hospital, the hospitals of Uddevalla and Skövde, and 12 primary care centres in Western Sweden. The prevalence of self-reported trad-CVRFs was compared between diagnoses by age standardisation with the 2018 population of Sweden as the standard population.Results In total, 2896 (56.5%) of 5130 patients responded. Hypertension was the most frequently found comorbidity, reported by 65% of patients with gout, 41% with PsA, 43% with RA and 29% with AS. After age standardisation, women and men with gout had significantly more obesity (body mass index ≥30 kg/m2), hypertension, diabetes, hyperlipidaemia and multiple trad-CVRFs, compared with those with PsA, RA and AS. Obesity was significantly more common in PsA than in RA. In women, obesity, hypertension and multiple trad-CVRFs were more frequently reported in PsA than in RA and AS, whereas similar prevalence of CVRFs and coexistence of multiple trad-CVRFs were found in men with PsA, RA and AS.Conclusions Women and men with gout had the highest prevalence of trad-CVRFs. Differences in occurrence of CVRFs by sex were found in patients with PsA, RA and AS. In women, patients with PsA had higher occurrence of trad-CVRFs than those with RA and AS, whereas in men the distribution of CVRFs was similar in PsA, RA and AS

Professionals' perspectives on existing practice and conditions for nurse-led gout care based on treatment recommendations : a qualitative study in primary healthcare

BACKGROUND: Gout affects nearly 2 % of the population and is associated with repeated painful flares of arthritis. Preventive urate-lowering therapy is widely available, but only one third of patients receive adequate treatment. Lack of knowledge among healthcare professionals and patients within primary healthcare are implicated as partial explanations for this undertreatment. Nurse-led care has proved to be an effective model when treating patients with gout, but there is a need for more knowledge about factors that can be expected to influence the future implementation of such care. The aim of this study was to describe factors influencing existing gout care in primary healthcare and the conditions for a future implementation of nurse-led gout care based on national treatment recommendations. METHODS: In this qualitative study, focus group discussions with 56 nurses and physicians and individual interviews with eight managers were conducted at nine primary healthcare units in central Sweden. A deductive qualitative content analysis based on the main constructs of the framework Integrated Promoting Action on Research Implementation in Health Services was followed by an inductive analysis within the frames of the main constructs: innovation, recipients and context. RESULTS: Gout-related contacts with primary healthcare was described as being patient initiated, diagnostics was in some respects complex and nurse-led care was experienced as a favourable primary healthcare model in general (innovation). Gout was seen as a low-priority condition with acute flares and there was inadequate knowledge of gout, including preventive treatment (recipients). Primary healthcare was perceived as having a holistic but fragmented responsibility for gout care, recommendations against keeping waiting lists complicated follow-up appointments and a need for motivation and support when introducing new practices was emphasised (context). CONCLUSION: In this study, investigating the perspective of professionals, several factors were found to influence existing gout care. It will be crucial to target these factors in the development of a future implementation strategy