A personal and professional journey - experiences of being trained online to be a supervisor in professional supervision in nursing.

BACKGROUND: Nurses often work alone in complex environments with ambiguous responsibilities and need ensured access to supervision.Online supervision has become common and has potential to support supervision in rural areas. AIM: To explore the experiences of registered nurses (RNs) learning online to be a supervisor in professional supervision in nursing. DESIGN: A longitudinal qualitative design was used. METHODS: A total of six focus group discussions, with 15 RNs divided in two groups, were conducted before, during, and after the training. Data underwent qualitative content analysis. RESULTS: Results showed that the participants experienced learning to be a supervisor online as a personal and professional journey, and learning online was an advantage rather than a disadvantage. Initially, they focused on themselves, then on themselves within the group, and finally on themselves and the group. Both the group and the internet environment were described as safe places. Online tutoring needs to include the creation of a social presence within the group.

The influence of lifestyle habits on quality of life in patients with established rheumatoid arthritis-A constant balancing between ideality and reality.

INTRODUCTION: Rheumatoid arthritis (RA) is a chronic, inflammatory, and systemic disease with symptoms that limit activities and affect quality of life. RA is associated with an increased risk of developing comorbidities, some of which are also known to be associated with lifestyle habits such as physical activity, diet, smoking, and alcohol. There has been an augmented focus on the implementation and maintenance of healthy lifestyle habits even for patients with RA in the past decade, but little is known about the link between patients' experiences of lifestyle habits and quality of life. The aim of the study was thus to describe and explore how patients with established RA experience the influence of lifestyle habits on quality of life. METHODS: The study had a descriptive and explorative design, based on qualitative content analysis. Strategic sampling was used in order to achieve variations in experiences. Twenty-two patients with RA (14 women and 8 men) from 30 to 84 years old, with a disease duration ranging from 8 to 23 years, were interviewed. RESULTS: The analysis of the influence of lifestyle habits on quality of life resulted in the theme balancing between ideality and reality. Three categories emerged about how lifestyle habits influenced quality of life by limitations (including insufficiency and adaptation), self-regulation (including guilt and motivation), and companionship (including belonging and pleasure). CONCLUSIONS: Quality of life for patients with established RA was influenced by the balance between ideality and reality in the lifestyle habits: physical activity, diet, smoking, and alcohol. This is important new knowledge for health professionals when discussing lifestyle habits with RA patients.

A nurse-led rheumatology clinic versus rheumatologist-led clinic in monitoring of patients with chronic inflammatory arthritis undergoing biological therapy: a cost comparison study in a randomised controlled trial.

BACKGROUND: Recommendations for rheumatology nursing management of chronic inflammatory arthritis (CIA) from European League Against Rheumatism (EULAR) states that nurses should take part in the monitoring patients' disease and therapy in order to achieve cost savings. The aim of the study was to compare the costs of rheumatology care between a nurse-led rheumatology clinic (NLC), based on person-centred care (PCC), versus a rheumatologist-led clinic (RLC), in monitoring of patients with CIA undergoing biological therapy. METHODS: Patients with CIA undergoing biological therapy (n = 107) and a Disease Activity Score of 28 ≤ 3.2 were randomised to follow-up by either NLC or RLC. All patients met the rheumatologist at inclusion and after 12 months. In the intervention one of two annual monitoring visits in an RLC was replaced by a visit to an NLC. The primary outcome was total annual cost of rheumatology care. RESULTS: A total of 97 patients completed the RCT at the 12 month follow-up. Replacing one of the two annual rheumatologist monitoring visits by a nurse-led monitoring visit, resulted in no additional contacts to the rheumatology clinic, but rather a decrease in the use of resources and a reduction of costs. The total annual rheumatology care costs including fixed monitoring, variable monitoring, rehabilitation, specialist consultations, radiography, and pharmacological therapy, generated € 14107.7 per patient in the NLC compared with € 16274.9 in the RCL (p = 0.004), giving a € 2167.2 (13 %) lower annual cost for the NLC. CONCLUSIONS: Patients with CIA and low disease activity or in remission undergoing biological therapy can be monitored with a reduced resource use and at a lower annual cost by an NLC, based on PCC with no difference in clinical outcomes. This could free resources for more intensive monitoring of patients early in the disease or patients with high disease activity. TRIAL REGISTRATION: The trial is registered as a clinical trial at the ClinicalTrials.gov (NCT01071447). Registration date: October 8, 2009.

Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy.

AIM: To compare and evaluate the treatment outcomes of a nurse-led rheumatology clinic and a rheumatologist-led clinic in patients with low disease activity or in remission who are undergoing biological therapy. BACKGROUND: Patients with chronic inflammatory arthritis treated with biological therapy are usually monitored by rheumatologists. Nurse-led rheumatology clinics have been proposed in patients with low disease activity or in remission. DESIGN: Randomized controlled trial. METHODS: A 12-month follow-up trial was conducted between October 2009 and August 2011, where 107 patients were randomized into two groups with a 6-month follow-up to a nurse-led rheumatology clinic based on person-centred care (intervention group; n = 53) or to a rheumatologist-led clinic (control group; n = 54). The hypothesis was that the nurse-led clinic outcomes would not be inferior to those obtained from a rheumatologist-led clinic at the 12-month follow-up. The primary outcome was disease activity measured by Disease Activity Score 28. RESULTS: A total of 47 patients in the intervention group and 50 in the control group completed the 12-month trial. The trial revealed no statistically significant differences between groups in mean change of Disease Activity Score 28, Visual Analogue Scales for pain, the Health Assessment Questionnaire, satisfaction with or confidence in obtaining rheumatology care. CONCLUSION: Patients with stable chronic inflammatory arthritis undergoing biological therapy could be monitored by a nurse-led rheumatology clinic without difference in outcome as measured by the Disease Activity Score 28.

Effects of a self-care promoting problem-based learning programme in people with rheumatic diseases: a randomized controlled study.

AIM: To evaluate the effects of a self-care promoting problem-based learning programme for people with rheumatic diseases in terms of health-related quality of life, empowerment, and self-care ability. BACKGROUND: Individuals with rheumatoid arthritis express a great need for education and support in adapting to the disease, but the average qualities of studies about patient education interventions are not high. There is no evidence of long-term benefits of patient education. DESIGN: Randomized controlled trial. METHODS: A randomized controlled design was selected with test at baseline, 1-week and 6-month post-interventions after completed the 1-year programme. The tests consisted of validity and reliability tested instruments. The participants were randomly assigned in spring 2009 to either the experimental group (n = 54) or the control group (n = 148). The programme was running alongside the standard care the participants received at a rheumatology unit. Parametric and non-parametric tests were used in the analyses. RESULTS: The participants in the experimental group had statistically significant stronger empowerment after participation in the self-care promoting problem-based learning programme compared with the control group, at the 6-month post-intervention. Approximately, two-thirds of the participants in the experimental group stated that they had implemented lifestyle changes due to the programme. CONCLUSION: The self-care promoting problem-based learning programme enabled people with rheumatic diseases to improve their empowerment compared with the control group. It is important to continue to develop problem-based learning in patient education to find the very best way to use this pedagogical method in rheumatology care.

Nurses' various ways of conceiving their learning process as doctoral students: a phenomenographic study.

AIM: The aim was to describe variations in how doctoral students conceive their learning process to become researchers in the light of their professional background as nurses. BACKGROUND: Nursing research is an emerging discipline and the number of nurses who acquire a doctor's degree is increasing. METHOD: The study had a descriptive, qualitative design with a phenomenographic approach and was carried out by means of 20 interviews. RESULTS: Three different description categories emerged: (1) A learning process that provides a synthesis of different parts of the research process aimed at developing preparedness for action within the nursing profession. (2) A learning process where practical problems are integrated with and problematised in relation to scientific theories. (3) A learning process involving the transformation from nurse to researcher. CONCLUSIONS: The description categories revealed that the focus was on solving problems that occur in health care and synthesising them by means of research tools. Furthermore, the doctoral students explored different ways of understanding and developing their awareness of the nature of research. Focus was also on the nursing profession and practice and a shift towards the role of a researcher was evident.

Patients' experiences of a nurse-led rheumatology clinic in Sweden: a qualitative study.

In this study, patients' experiences of a nurse-led rheumatology clinic for those undergoing biological therapy are discussed. The study had an explorative design, based on a qualitative content analysis with an inductive approach. Strategic sampling was used in order to achieve variations in experiences of a nurse-led clinic. Interviews were conducted with 20 participants, and the analysis resulted in the theme "the nurse-led rheumatology clinic provided added value to patient care". The participants' experiences of the encounter with the nurse led to a sense of security (due to competence and accessibility), familiarity (due to confirmation and sensitivity), and participation (due to exchange of information and involvement). Replacing every second visit to a rheumatologist with one to a nurse added value to the rheumatology care, making it more complete. Nurses and rheumatologists complemented each other, as they approached patients from different perspectives. This study suggests that a nurse-led rheumatology clinic adds value to the quality of care for patients in rheumatology units.

Psychometric properties of the Swedish Rheumatic Disease Empowerment Scale, SWE-RES-23.

INTRODUCTION: Empowerment is a central concept in both rheumatology and diabetes care. A Swedish empowerment instrument for patients with rheumatic diseases has not been created before now. The aim of the present study was to determine the psychometric properties of the Swedish Rheumatic Disease Empowerment Scale, SWE-RES-23, such as construct validity, internal consistency reliability, inter-item correlations and discriminant validity. METHODS: The already existing instrument, the Swedish Diabetes Empowerment Scale (SWE-DES-23), was adapted for use in patients with rheumatic diseases. The adapted instrument was called the SWE-RES-23. In 2009, 260 patients with rheumatic diseases from a rheumatology unit in Sweden completed the instrument. Construct validity was tested by using exploratory factor analysis. Internal consistency reliability was tested by the use of Cronbach's α-coefficient. In order to determine unidimensionality of the empowerment subscales, inter-item correlations were calculated. To establish discriminant validity, an item about self-perceived health from the Short Form (SF) 36 was used in addition to the SWE-RES-23. RESULTS: The exploratory factor analysis resulted in five factors (empowerment subscales) with eigenvalues >1, explaining 64.1% of the total variance: Goal achievement and overcoming barriers to goal achievement; Self-knowledge; Managing stress; Assessing dissatisfaction and readiness to change; and Support for caring. Cronbach's α values ranged from 0.59 to 0.91, and the value for the total score was 0.92. CONCLUSION: The results support the possibility of adapting the SWE-DES-23 for use in patients with rheumatic diseases. The SWE-RES-23 shows acceptable psychometric properties, in terms of construct validity and internal consistency reliability. To validate the SWE-RES-23 fully, further studies are needed, with a focus on test-retest correlations.

Nurses' conceptions of how an alternative supervision model influences their competence in assessment of nursing students in clinical practice.

AIM: The aim of the study was to describe variations in clinical nurses' conceptions of how an alternative supervision model influences their competence in assessing nursing students in clinical practice. BACKGROUND: Nursing education programme in Norway includes 50 weeks of clinical studies. Due to changes in the education system and increased focus on evidence-based practice, alternative models of supervision and assessment have been developed. METHOD: The study has a qualitative and descriptive design using a phenomenographic approach. Informants were 49 clinical nurses from five different nursing homes. RESULTS: The clinical nurses' experiences are described through three description categories: 'pressure', 'encouragement' and 'development'. The informants experienced demands from the University College and colleagues, but personal and professional development was encouraged through group supervision and written information from the University College. CONCLUSIONS: The alternative supervision model supported the clinical nurses in the assessment of the nursing students, and their role as educators. The alternative supervision model also seems to strengthen the relationship between field of practice and University College.

"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.

"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.

Factors promoting health-related quality of life in people with rheumatic diseases: a 12 month longitudinal study.

BACKGROUND: Rheumatic diseases have a significant adverse impact on the individual from physical, mental and social aspects, resulting in a low health-related quality of life (HRQL). There is a lack of longitudinal studies on HRQL in people with rheumatic diseases that focus on factors promoting HRQL instead of risk factors. The aim of this study was to investigate the associations between suggested health promoting factors at baseline and outcome in HRQL at a 12 month follow-up in people with rheumatic diseases. METHODS: A longitudinal cohort study was conducted in 185 individuals with rheumatic diseases with questionnaires one week and 12 months after rehabilitation in a Swedish rheumatology clinic. HRQL was assessed by SF-36 together with suggested health factors. The associations between SF-36 subscales and the health factors were analysed by multivariable logistic regressions. RESULTS: Factors predicting better outcome in HRQL in one or several SF-36 subscales were being younger or middle-aged, feeling painless, having good sleep structure, feeling rested after sleep, performing low effort of exercise more than twice per week, having strong sense of coherence (SOC), emotional support and practical assistance, higher educational level and work capacity. The most important factors were having strong SOC, feeling rested after sleep, having work capacity, being younger or middle-aged, and having good sleep structure. CONCLUSIONS: This study identified several factors that promoted a good outcome in HRQL to people with rheumatic diseases. These health factors could be important to address in clinical work with rheumatic diseases in order to optimise treatment strategies.

Experiences of health-promoting self-care in people living with rheumatic diseases.

AIM: This paper is a report of a study that explores and describes the meaning of the phenomenon of health-promoting self-care as experienced by people living with rheumatic diseases. BACKGROUND: People with rheumatic diseases estimate health status as low and health belief and health status influence self-care behaviours. Several self-care behaviours are used in the efforts to mitigate the diseases. METHOD: The study had a descriptive phenomenological approach based on a reflective life-world perspective. Data were gathered in 2007 by unstructured open-ended interviews with 12 individuals living with rheumatic diseases. FINDINGS: The meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care takes place against a background of continual hope and belief to influence health in positive ways. Self-care was a way of life and implied being ready to understand and respond to signals from the body. Three inter-related constituents elucidated their experiences: dialogue, power struggle and choice. Self-care was experienced as dialogues with the body and with the immediate environment. In order to respond to signals from the body, power struggles were required to be entered into when fighting the diseases. Choices were required to be made and things that were beneficial for the body were prioritized. CONCLUSION: In this study, the meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care was a way of life. This meant to be ready to understand and respond to signals from the body. Self-care required dialogues, power struggles and choices.

Sickness absence in musculoskeletal disorders - patients' experiences of interactions with the social insurance agency and health care. A qualitative study.

BACKGROUND: Sickness absence has represented a growing public health problem in many Western countries over the last decade. In Sweden disorders of the musculoskeletal system cause approximately one third of all sick leave. The Social Insurance Agency (SIA) and the health care system are important actors in handling the sickness absence process. The objective was to study how patients with personal experience of sickness absence due to musculoskeletal disorders perceived their contact with these actors and what they considered as obstructing or facilitating factors for recovery and return to work in this situation. METHODS: In-depth interviews using open-ended questions were conducted with fifteen informants (aged 33-63, 11 women), all with experience of sickness absence due to musculoskeletal disorders and purposefully recruited to represent various backgrounds as regards diagnosis, length of sick leave and return to work. The interviews were audio-recorded, transcribed verbatim and analysed using content analysis. RESULTS: The informants' perceived the interaction with the SIA and health care as ranging from coherent to fragmented. Being on sick leave was described as going through a process of adjustment in both private and working life. This process of adjustment was interactive and included not only the possibilities to adjust work demands and living conditions but also personal and emotional adjustment. The informants' experiences of fragmented interaction reflected a sense that their entire situation was not being taken into account. Coherent interaction was described as facilitating recovery and return to work, while fragmented interaction was described as obstructing this. The complex division of responsibilities within the Swedish rehabilitation system may hamper sickness absentees' possibilities of taking responsibility for their own rehabilitation. CONCLUSIONS: This study shows that people on sick leave considered the interaction with the SIA and health care as an important part of the rehabilitation process. The contact with these actors was perceived as affecting recovery and return to work. Working for a more coherent process of rehabilitation and offering professional guidance to patients on sick leave might have an empowering effect.

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' independence of a nurse for the administration of subcutaneous anti-TNF therapy: A phenomenographic study.

Rheumatology nursing supports patients to manage their lives and live as independently as possible without pain, stiffness and functional restrictions. When conventional drugs fail to delay the development of the rheumatic disease, the patient may require biological treatment such as self-administered subcutaneous anti-tumour necrosis factor (TNF) therapy. It is therefore important that the patient perspective focuses on the life-changing situation caused by the administration of regular subcutaneous injections. The aim of this study was to describe variations in how patients with rheumatic diseases experience their independence of a nurse for administration of subcutaneous anti-TNF therapy. The study had a descriptive, qualitative design with a phenomenographic approach and was carried out by means of 20 interviews. Four ways of understanding the patients' experience of their subcutaneous anti-TNF therapy and independence of a nurse emerged: the struggling patient; the learning patient; the participating patient; the independent patient. Achieving independence of a nurse for subcutaneous anti-TNF injections can be understood by the patients in different ways. In their strive for independence, patients progress by learning about and participating in drug treatment, after which they experience that the injections make them independent.

Patients' perceptions of drug information given by a rheumatology nurse: a phenomenographic study.

BACKGROUND: Pain, stiffness and functional restriction of the joints are the main problems experienced by patients with inflammatory rheumatic conditions. The majority of patients with rheumatic diseases require several drugs every day. Adherence is highest among patients who have repeatedly been given drug information by a nurse from the start of the treatment. When developing patient information, it is essential to utilize patients' experiences. OBJECTIVES: The purpose of this study was to describe variations in how patients with rheumatic diseases perceive drug information given by a rheumatology nurse. METHODS: The study had a descriptive qualitative design with a phenomenographic approach. Fifteen inpatients with rheumatic diseases who had received a new drug agreed to take part in the study and were interviewed. RESULTS: Three descriptive categories emerged: autonomy, power and security. Autonomy was based on patients' experiences of taking responsibility and participating. Power meant gaining knowledge and being motivated to take the drug. Security involved trust, experiencing care and access to a rheumatology nurse. CONCLUSIONS: For patients with a rheumatic disease, drug information from a rheumatology nurse gave them autonomy, power and security. These factors could explain why information from a nurse increases adherence to drug treatment.

Perception of multimodal cognitive treatment for people with chronic widespread pain--changing one's life plan.

PURPOSE: The aim of this study was to gain a deeper understanding of chronic widespread pain patients' perception of a multimodal treatment with a cognitive approach. METHODS: A reformulated grounded theory study based on interviews with 16 participants in the programme was conducted at the end of a 6-month treatment period. RESULTS: The result describes a conceptual model of the informants' perception of the treatment. The core category 'changing one's life plan' comprised of three categories: 'changing one's perception of life', 'depending on support' and 'managing one's life'. Changing one's perception of life could be deep and overwhelming 'overall life changes' or more superficial 'life adjustments'. Support by health professionals and the patient group were of importance. At the end of the rehabilitation program managing one's life was perceived as either 'reorientation' or 'stagnation'. The informants who experienced overall life changes achieved reorientation with support by others, while those who experienced life adjustments did not change their way of managing one's life to any great extent. CONCLUSION: The core category changing one's life plan included the categories; changing one's perception of life, depending on support and managing one's life. Informants experiencing overall life changes were more likely to achieve reorientation than those who experienced life adjustments.

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.

Reliability, validity and responsiveness of a new leisure index: the Patient-Specific Leisure Scale (PSLS).

OBJECTIVES: To investigate the reliability, validity and responsiveness of a new Patient-Specific Leisure Scale (PSLS), constructed to identify goals and outcomes for individual patients with rheumatoid arthritis (RA). METHODS: Forty-nine patients with RA were used to evaluate test-retest reliability, and 100 consecutive RA patients were used for construct validity. Twenty-five RA patients, commencing with treatment on tumour necrosis factor (TNF) inhibitors, were evaluated before the start and after three months of therapy, to test responsiveness. The most important leisure activity (as judged by the patients) was used when evaluating reliability and validity. The perceived difficulty with each activity was scored from 0 to 10 (0 = able to perform activity without difficulty, 10 = unable to perform activity). RESULTS: Test-retest reliability indicated a good agreement (0.62-0.87) using weighted kappa. Construct validity was demonstrated by modest positive correlation between leisure activity and Health Assessment Questionnaire (HAQ) (r(s) = 0.27, p = 0.005) visual analogue scale (VAS) pain (r(s) = 0.28, p = 0.004) VAS global (r(s) = 0.22, p = 0.027), VAS fatigue (r(s) = 0.24, p = 0.013), joint index of 28 swollen joints (r(s) = 0.22, p = 0.027) and negative correlations with short-form-36 (SF-36) physical functioning (r(s) = -0.18, p = 0.008), bodily pain (r(s) = -0.31, p < 0.001), general health (r(s) = -0.23, p = 0.019), vitality (r(s) = -0.31, p < 0.001), social function (r(s) = -0.24, p = 0.016) and role-emotional (r(s) = -0.28, p = 0.005). Mean improvement for the most important leisure activity was 1.36, (p = 0.036, 95% confidence interval 0.10-2.62). Standardized response mean and effect size for the most important activity in PSLS was 1.05 and 0.72, respectively, and for HAQ 0.34 and 0.28, respectively. CONCLUSIONS: PSLS appears to be feasible, reliable, valid and responsive for measuring leisure activities in RA. It provides both an individual result which is useful in clinical work, and results at a group level.