Gender differences in illness perceptions and disease management in patients with gout, results from a questionnaire study in Western Sweden.

BACKGROUND: Aims were to examine gender differences in patients with gout with regard to a) self-reported gout severity, b) illness perceptions (IP), c) impact on daily activities and Quality of Life (QoL), d) advice from healthcare professionals, e) having changed dietary- or alcohol habits. METHODS: Adult patients with gout identified in primary and secondary care in Sweden between 2015 and 2017 (n = 1589) were sent a questionnaire about demographics, gout disease severity, IP (using the Brief Illness Perception Questionnaire, (B-IPQ)) and disease management. T-tests, Chi square tests, ANalysis Of VAriance (ANOVA) and linear regression models were used for gender comparisons. RESULTS: Eight hundred sixty-eight patients responded to the questionnaire. Women, n = 177 (20%), experienced more severe gout symptoms (p = 0.011), albeit similar frequencies of flares compared to men. Women experienced modest but significantly worse IP with regard to consequences, identity, concerns and emotional response (p < 0.05) as well as daily activities such as sleeping (p < 0.001) and walking (p = 0.042) and QoL (p = 0.004). Despite this and a higher frequency of obesity in women (38 vs 21%, P < 0.001) and alcohol consumption in men (p < 0.001), obese women had received significantly less advice regarding weight reduction (47 vs 65%, p = 0.041) compared to obese men. On the other hand, women reported having acted on dietary advice to a larger degree. CONCLUSIONS: Despite only modestly worse gout severity and perception, women appear to have been given less information regarding self-management than men. These gender differences should be given attention and addressed in clinical care.

"Togetherness in loneliness" - experiences of a group activity for families with a child suffering from cancer as described from the parents' perspective.

BACKGROUND: When a child is afflicted by a life-threatening disease, it places a huge burden on the family. AIM: To gain a deeper understanding of parents' experiences of psycho-social support in a group activity for families with children and adolescents suffering from cancer. METHOD: Data were collected by means of focus group interviews with 10 parents from eight families with children treated for cancer during the period 2011-2017. The interviews were transcribed and analysed in accordance with qualitative content analysis. RESULTS: An overarching theme"Togetherness in loneliness" emerged, highlighting the importance of sharing experiences, based on the main categories: "a clearing house" and "a meeting place". A clearing house was described as a place for sharing experiences on equal terms and a short cut to care contacts. A meeting place was depicted as a temporary home, a place for recuperation, but that sharing also had a cost. DISCUSSION: The results revealed that the parents of children suffering from cancer experienced the group activity for such families as an important support during the treatment period. The group served as an arena for mutual support and exchange of experiences, but it was also an easy way for the participants to access psychosocial support at an early stage of the cancer treatment. There was a risk that the participants would be unable to cope with sharing the anxiety and setbacks experienced by others, something that might be difficult to foresee when joining the group.

"Aha, so that's how it's done!" - parents' voices on an early language and literacy intervention.

The early intervention Språkstart Halland targets children aged 0-3 years. During home visits at 6 and 11 months, library staff deliver gift-packs containing books, toys, songs, and rhymes to promote early language stimulation. Parents are encouraged to engage in 'talk, play, sing, read' activities to support language development. The aim of the present study was to examine parents' experiences of the 6- and 11-month visits and develop an understanding of their general impressions and thoughts regarding the perceived impact of the visits. Parents (n = 15) were interviewed in four focus groups and two one-on-one interviews. Data was analysed using qualitative content analysis. The findings show that the intervention changed the parents' mindset and increased their knowledge regarding early language stimulation. Tools and strategies benefitting the parent-child interaction were gained. A positive experience and personal guidance created motivation for the parents to carry out the language stimulating activities after the visit. Social gains were described. The findings imply usefulness of the intervention in supporting children's language and literacy development.

Individuals' Experiences of Being Screened for Hypertension in Dental Health Care - "No Big Deal".

Background: Hypertension is a common disease globally that accounts for the highest number of lost healthy life years and strongly associated with sequelae such as stroke and myocardial infarction. Early detection of individuals with high blood pressure can be ensured by screening also those who consider themselves "healthy". Screening has both positive and negative effects where a diagnosis of hypertension can lead to worry about the future. These effects need to be elucidated in order to balance between benefit and harm before screening is introduced. The aim of the study was to describe individuals' experiences of being screened for hypertension in dental health care. Methods: Data from individual semi-structured interviews, with twenty participants screened for cardiovascular risk factors in connection with dental examination and aged 55-80 years, were analysed by means of qualitative content analysis. Results: The results describe individuals' experiences of blood pressure screening in dental health care by means of the following theme: "No big deal" based on two categories: "Convenient way of measuring blood pressure" and "Increased awareness of health". Conclusion: The overall message from the interviews was that having one's blood pressure measured when visiting the dentist was convenient, easy and "No big deal". Blood pressure screening did not create any major concerns and contributed to an increased awareness of health.

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.

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.

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.

[Large health benefits can be achieved by better treatment of gout]. / Stora hälsovinster att uppnå med bättre behandling av gikt.

Urate lowering therapy (ULT) should, according to recent guidelines, be initiated in the majority of cases already after the first attack of gout. Allopurinol is the first line choice of ULT and should be started with low dose, which is increased until the treatment target is reached. The treatment target should be a blood urate of < 360 µmol/l or < 300 µmol/l (in the presence of topfi), which should be maintained until topfi have resolved. NSAID/cox-inhibitors, colchicine and glucocorticoids are all valid short-term treatments of gout attacks. ULT should not be paused/terminated during attacks and can be initiated during an attack that is adequately treated. Recent RCTs of ULT treatment have demonstrated the importance of thorough and adequate information to the patient and regular follow-up until treatment targets are reached. Such a strategy improve both compliance and outcomes of ULT treatment.

A randomized study comparing regular care with a nurse-led clinic based on tight disease activity control and person-centred care in patients with rheumatoid arthritis with moderate/high disease activity: A 6-month evaluation.

INTRODUCTION: A recent survey showed that 27% of rheumatoid arthritis (RA) patients had inadequately controlled disease activity. Hence, there is a need for new strategies aiming at improving patient outcomes. The aim of the present study was to evaluate the effect of a nurse-led clinic with frequent visits, treat-to-target and person-centred care of patients with established RA and moderate-to-high disease activity compared with patients receiving regular care. METHODS: The study was a randomized, controlled trial over 26 weeks, with a nonrandomized extension to week 50. Patients were randomized to an intervention group (IG; nurse-led clinic) based on person-centred care, frequent visits and "treat to target", or to a control group (CG) which visited the clinic according to care as usual. The primary outcome was the difference in the DAS28 change between the IG and the CG groups. RESULTS: A total of 332 patients were screened for eligibility, of which 70 were randomly assigned to either the IG (n = 36) or the CG (n = 34) group. The primary outcome was not met, although patients in the IG group tended to improve more than those in the CG group (difference: 0.43 (95% confidence interval [CI] -0.27, 1.13). In both the IG and CG groups, delta-DAS28 improved significantly. The European League Against Rheumatology moderate or good response was achieved by 76% (95% CI 58, 89) in the IG and 49% (95% CI 32, 65) in the CG group. CONCLUSIONS: Disease activity tended to improve more with the nurse-led intervention compared with regular care, although the difference was not significant, probably partly due to the lack of statistical power.

The Validity of Gout Diagnosis in Primary Care: Results from a Patient Survey.

OBJECTIVE: Validate primary care diagnosis of gout by the Mexico and the Netherlands classification criteria. METHODS: Questionnaires on gout characteristics were sent to all individuals aged ≥ 18 with ≥ 1 International Classification of Diseases, 10th ed. diagnosis of gout at 12 primary care centers. RESULTS: Positive predictive values for gout diagnosis ranged from 71% for the Netherlands criteria to 80% for the Mexico criteria. Maximum inflammation within 24 h was the most common reported symptom (86%). CONCLUSION: The vast majority of gout cases in primary care fulfill classification criteria and are valid for research purposes.

Patients' experiences of frequent encounters with a rheumatology nurse-A tight control study including patients with rheumatoid arthritis.

BACKGROUND: Rheumatoid arthritis (RA) is a chronic inflammatory disease that is treated with both pharmacological and nonpharmacological methods. The treatment works well for patients who are knowledgeable about their disease and situation. However, this may be different for others as, among other things, it depends on how well informed the patients are in relation to their condition. Available research primarily focuses on patients in remission. One way of supporting and strengthening the group who experience a lack of well-being due to their disease and providing them with increased knowledge about their situation can be to give them access to a nurse-led clinic based on person-centred care. AIM: The aim of the study was to describe the experience of patients with RA attending person-centred, nurse-led clinics over a 12-month period. METHODS: A qualitative method was employed to deepen the understanding of the phenomenon. Fifteen participants were interviewed, and the text of the interviews was analysed using the phenomenographic method. RESULTS: The analysis resulted in three categories that described participants' experiences of their encounters with a nurse. The three categories describe a process with interrelated concepts: first, Encountering competence, followed by Experiencing a sustainable relationship and, finally, Making a personal journey. CONCLUSION: Patients with RA who had frequent meetings with a nurse experienced being strengthened on several levels and having gained increased knowledge about their disease. The person-centred approach made them feel that they had been met on their own level, in accordance with their needs and level of knowledge.

The nurse's role in addressing unmet treatment and management needs of patients with rheumatoid arthritis: Delphi-based recommendations.

PURPOSE: Evaluate nurse's role in management of patients with rheumatoid arthritis (RA). METHODS: Modified Delphi with two rounds of questionnaires, followed by in-person meeting. International group of 12 nurses experienced with RA patients receiving biologic therapy. FINDINGS: Nurses often spend more time with patients than doctors do. Nurse is in unique position to explore patient needs; educate about treatment, administration, product storage, and self-injection technique; determine readiness for and understanding of treatment; monitor safety and progress; and coordinate care within multidisciplinary setting. CONCLUSIONS: Nurse's role is complex and vitally important to optimal RA patient care. Additional nurse involvement may address unmet needs. IMPLICATIONS FOR NURSING PRACTICE: Rheumatology nurses can address unmet patient needs by expanding current roles and by adopting additional functions.

The Nurse's Role in Addressing Unmet Treatment and Management Needs of Patients With Rheumatoid Arthritis: Delphi-Based Recommendations.

PURPOSE: Evaluate nurse's role in management of patients with rheumatoid arthritis (RA). METHODS: Modified Delphi with two rounds of questionnaires, followed by in-person meeting. International group of 12 nurses experienced with RA patients receiving biologic therapy. FINDINGS: Nurses often spend more time with patients than doctors do. Nurse is in unique position to explore patient needs; educate about treatment, administration, product storage, and self-injection technique; determine readiness for and understanding of treatment; monitor safety and progress; and coordinate care within multidisciplinary setting. CONCLUSIONS: Nurse's role is complex and vitally important to optimal RA patient care. Additional nurse involvement may address unmet needs. IMPLICATIONS FOR NURSING PRACTICE: Rheumatology nurses can address unmet patient needs by expanding current roles and by adopting additional functions.

Patient-reported events preceding the onset of rheumatoid arthritis: possible clues to aetiology.

AIMS: Patients with rheumatoid arthritis (RA) often report events that they believe may have caused their disease. We attempted to characterize such causal events and the possible relationship between these and outcomes. METHODS: Between 1996 and 2004, 1,787 adult patients were included in the Better Anti-Rheumatic FarmacOTherapy (BARFOT) early RA study in Sweden. Six possible causal events at baseline were predefined. Disease Activity Score 28-joint count (DAS28) and treatment were registered at inclusion and at three, six and 12 months. The European League against Rheumatism (EULAR) response criteria were used. RESULTS: A total of 1,652 patients (92%) answered the question about possible causal events. Thirty per cent (490) of the patients believed that some event in particular had caused their RA. Sixteen per cent of the patients thought that infection, 4.4% psychological trauma, 4.1% physical trauma, 2.8% surgery, 1.5% pregnancy and 1.2% vaccination had been the cause. Younger patients attributed previous infection to their RA more often than older patients. There were no differences in EULAR response up to one year between patients who reported some event or infection and patients who did not. RA thought to be caused by infection showed a seasonal trend in the month of onset. Women reported that trauma had been a cause of their RA more often than men. CONCLUSION: Thirty per cent of the patients reported some causal event and 16% reported infection to be the cause of their RA. There were differences in gender and age in what patients reported as the cause of their RA.

"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 support.

Patterns of background factors related to early RA patients' conceptions of the cause of their disease.

The aim of the present study was to identify patterns of background factors related to the early RA patients' conceptions of the cause of the disease. Conceptions from a qualitative study formed the basis for the stratification of 785 patients from the Swedish EIRA study answering a question about their own thoughts about the cause to RA. Logistic regression analyses were used to explore the associations between patients' conceptions and relevant background factors: sex, age, civil status, educational level, anti-cyclic citrullinated peptide antibody (anti-CCP) and smoking habits. The results were presented as odds ratios (OR) with 95% confidence intervals (CI). A conception of family-related strain was strongly associated with being young (OR 0.50; 95% CI 0.33-0.78 for age 58-70 vs. 17-46), female (OR 0.38; 95% CI 0.25-0.60 for male vs. female) and having a high level of education (OR 2.15; 95% CI 1.54-3.01 for university degree vs. no degree). A conception of being exposed to climate changes was associated with being male (OR 1.99; 95% CI 1.24-3.22 for male vs. female), having a low level of education (OR 0.33; 95% CI 0.18-0.58 for university degree vs. no degree) and positive Anti-CCP (OR 1.72; 95% CI 1.03-2.87 for positive vs. negative Anti-CCP). Linking patients' conceptions of the cause of their RA to background factors potentially could create new opportunities for understanding the complexity of the aetiology in RA. Furthermore, this information is important and relevant in the care of patients with early RA.

Patients' conceptions of the cause of their rheumatoid arthritis: a qualitative study.

BACKGROUND: Patients' perspective of the causes and consequences of rheumatoid arthritis (RA) can conflict with that of healthcare professionals and lead to misunderstanding, difficulties in management and a poorer outcome. OBJECTIVES: The aim of this study was to describe the variation in how patients conceive the cause of their RA. METHODS: An open written question from the Epidemiological Investigation of Rheumatoid Arthritis (EIRA) study, aimed at patients recently diagnosed with RA, was answered by 38 strategically selected patients during 2003 and analysed using the phenomenographic approach. RESULTS: Two descriptive categories and six concepts emerged: the category 'consequences beyond personal control' comprised not having a clue, being exposed to climatic change, being genetically exposed and unexpected effects of events; the category 'overloaded circumstances' involved work and family-related strain. Consequences beyond personal control implied that the patients could not prevent the disease and expressed their lack of understanding as to why they contracted it. Overloaded circumstances were described as strained situations that were both work and family related and could be influenced by the patient. CONCLUSIONS: The patient's perspective of the cause of their RA includes aspects that complement the current pathogenetic models and should therefore be considered in the management of the disease. When dealing with rheumatic diseases, it is necessary to be aware of the patient's perspectives in order to new management strategies. In addition to epidemiological studies, further studies of patients' own experience are needed in order to achieve a more tailored care model.

Perception of tactile massage as a complement to other forms of pain relief in rheumatic disease.

OBJECTIVE: To investigate how patients with rheumatic disease perceive tactile massage as a complement to other pain alleviation methods. METHODS: A phenomenographic approach with semi-structured interviews was employed on a strategic sample of 14 patients with various rheumatic diseases, both inflammatory and non-inflammatory, who had been admitted to Spenshult Rheumatic Hospital. RESULTS: Three descriptive categories with a total of nine conceptions emerged. The descriptive categories were: experiencing alleviation, experiencing trust, and gaining insight. Experiencing alleviation described how patients experience relaxation, pleasure and respite. Experiencing trust described how patients experience a sense of security, confirmation and inner peace. Gaining insight described how patients get to know themselves, see possibilities, and experience wholeness. CONCLUSIONS: When caring for patients who have a chronic illness involving considerable changes to their lives, it is important for health professionals not only to be aware of their physical needs but also to take account of the whole person. This study demonstrates the importance of offering patients a complement to conventional treatment. Tactile massage is a method that promotes a holistic view of patients with chronic pain as well as allowing them to find a new focus in terms of the disease and how they cope with it in their daily lives.