Bakgrund 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 utilise patients' experiences. The aim of this study was to describe variations in how patients with rheumatic diseases conceive drug information given by a rheumatology nurse.

Metod Fifteen informants who had been prescribed one or several new drugs during the period of hospitalisation were approached, agreed to take part in the study and were interviewed. Strategic sampling was carried out in order to achieve variation in conceptions of the phenomenon in terms of sex, age, marital status, education, type of rheumatic disease, disease duration and type of new drug

Resultat Three descriptive categories comprising seven conceptions emerged and revealed how the patients conceived the information about new medication provided by a nurse. Drug information led to Autonomy, Power and Security. Autonomy was based on the 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.

Sammanfattning Patients with a rheumatic disease experienced that drug information from a rheumatology nurse gave them autonomy, power and security. These factors could explain why information from a nurse increases drug treatment adherence.

Background: In person-centred care (PCC) a holistic approach, individualized care, empowerment and self-management are cornerstones. Patients are seen as persons with resources and are encouraged to take an active role in their own health care to become skilled or effective consumers of health care. Little is known of the impact of PCC vs. regular care on patients’ skills as health care consumers.

Objectives: To study the impact on effective consumers’ skills over 12 months in patients undergoing biological therapy and randomly assigned to either a nurse-led rheumatology clinic (NLC) based on PCC or to a rheumatologist-led clinic (RLC) as measured by the Effective Consumer Scale (EC17).

Methods: A 12 month RCT in 107 patients with chronic inflammatory arthritis.¹ Inclusion criteria were ongoing biological therapy and a DAS28 ≤3.2. All patients met a rheumatologist at inclusion and after 12 months, while the 6 month follow-up was performed in the assigned group, either at a NLC (PCC) or at an RLC (regular care). Outcome measure was the EC17, developed and endorsed by the OMERACT to measure skills in decision-making, navigation and negotiation with health care professionals (0-100, worse to best). Minimally Important Difference (MID) of EC17 was calculated (≥ 0.5 SD of the mean baseline score)² and patients categorized in three EC17 groups: improvement, no change or deterioration of consumer skills. Differences between intervention groups and EC17 groups were calculated with Chi². Global health, pain and HAQ were measured for descriptive purposes.

Results: A total of 101 patients completed the EC17 at baseline (mean 84 SD 10) and after 12 months. Twelve patients had baseline scores higher than 95 and a MID in improvement could not be measured why they were excluded, leaving 89 patients in the trial (mean age 53 SD 12 years, mean disease duration 16 SD 11 years, 54% women, RLC n=44, NLC n=45). At baseline mean (SD) DAS28 was 2.05 (0.68), global health 22 (17), pain 23 (18) and HAQ 0.55 (0.51). A larger proportion of patients improved according to EC17 in the NLC compared with the RLC (42% vs. 23%), and a smaller proportion deteriorated (16% vs. 23%; table). The differences were not statistically significant (p=0.14), probably due to a small sample size.

Table. Proportion of patients who deteriorated (≥5 units), remained stable or improved (≥5 units) in EC17 over 12 months monitored at a NLC or an RLC, total n= 89.

EC17 deterioration

NLC 16%   (n=7)

RLC 23%    (n=10)

EC17 stable

NLC 42%   (n=19)

RCL 54%   (n=24)

EC17 improvement

NLC 42%   (n=19)

RLC 23%   (n=10)

Conclusions: A nurse-led rheumatology clinic based on person-centred care resulted in a greater proportion of patients who reported a long term improvement in skills as consumers of health services compared with patients monitored by a rheumatologist-led clinic. Larger studies are needed to confirm the result.

References: 1. Larsson I, et al. Randomized controlled trial of a nurse-led rheumatology clinic for monitoring biological therapy. J Adv Nurs 2014;70(1):164-75.

2. Strand V, et al. It's good to feel better but it's better to feel good and even better to feel good as soon as possible for as long as possible. Response criteria and the importance of change at OMERACT 10. J Rheumatol 2011;38(8):1720-7.

Background: Pain, stiffness and functional restrictions of the joints are the main problems for patients with inflammatory rheumatic diseases. When conventional drugs fail to delay the development of the disease the patients may require biological therapy. These patients usually have rheumatologist follow-up twice a year. Nurse-led clinics have been proposed for patients treated with biological therapy that are in low disease activity or remission (Disease Activity Score, DAS <3.2). In an ongoing study at a Swedish rheumatology clinic every other rheumatologist follow-up has been replaced by a rheumatology nurse-led follow-up. At the nurse-led follow-up the patients' disease activity is assessed by examining tender or swollen joints and laboratory tests.Objectives: The purpose of this study was to describe patients' experiences of nurse-led follow-up in biological therapy.Methods: The study had a descriptive design with a qualitative content analysis approach. In qualitative content analysis the interpretations vary in depth and level of abstraction: the manifest content describes the visible, what the text says and creating categories, the latent content involves an interpretation of the underlying meaning of the text, what the text talks about and creating a theme. Seventeen interviews were conducted based on a strategic sampling in order to achieve variation in experiences of nurse-led follow-up in terms of sex, age, civil status, education, duration of disease and therapy and ways of administration.Results: The content analysis of the interviews resulted in the theme "The rheumatology nurse promotes patients with added value" which was based on four categories: familiarity, security, availability and participatory: Familiarity meant that it was easier to ask the rheumatology nurse about disease, treatment and how to live with a chronic disease than the rheumatologist. Patients experienced security in the rheumatology nurse's knowledge and skill. Availability meant that it was easy to contact the rheumatology nurse who spent time to patients' needs. Patients experienced being participatory in their biological therapy and in the rheumatology nurse's examination of the disease activity.Conclusions: The rheumatology nurse follow-up resulted in that patients experienced familiarity, security, availability and being participatory in their biological therapy. The rheumatology nurse promoted patients from another perspective, than the rheumatologist, in the rheumatology care. By replacing every other rheumatologist follow-up with a rheumatology nurse-led follow-up for patients with biological therapy, who are in low disease activity or remission, the rheumatology care will be more complete. A rheumatology nurse and a rheumatologist have different perspectives and complement each other. When patients are given the opportunity to meet both professions regularly they are able to receive optimal rheumatology care.

Disclosure of Interest: None Declared

Citation: Ann Rheum Dis 2011;70(Suppl3):755

Bakgrund Nurse-led clinics have been proposed for patients with rheumatic diseases treated with biological therapy who are in low disease activity or remission (Disease Activity Score, DAS <3.2). In an ongoing study at a Swedish rheumatology clinic every other rheumatologist follow-up has been replaced by a rheumatology nurse-led follow-up. At the nurse-led follow-up the patients´ disease activity is assessed by examining tender or swollen joints and laboratory tests. The purpose of this study was to describe patients´ experiences of rheumatology nurse-led follow-up in biological therapy.

Metod The study had a descriptive design with a qualitative content analysis approach. Strategic sampling was carried out in order to achieve variation in experiences of nurse-led follow-up. Interviews were conducted with 20 patients (10 males and 10 females, 10 i.v infusions and 10 s.c injections as way of administration, 34-76 years of age, and duration of illness 3-41 years).

Resultat The content analysis of the interviews resulted in the theme "The rheumatology nurse promotes patients with added value" Which was based on four categories: familiarity, security, availability and participatory: Familiarity meant that it was easier to ask the rheumatology nurse about disease, treatment and how to live with a chronic disease than the rheumatologist. Patients experienced security in the rheumatology nurse’s knowledge and skill. Availability meant that it was easy to contact the rheumatology nurse who spent time to patients' needs. Patients experienced being participatory in the biological therapy and in the rheumatology nurse’s examination of the disease activity.

Sammanfattning The rheumatology nurse-led follow-up resulted in that patients experienced familiarity, security, availability and being participatory in their biological therapy. The rheumatology nurse promoted patients from another perspective, than the rheumatologist. By replacing every other rheumatologist follow-up with a rheumatology nurse-led follow-up for patients with biological therapy, who are in low disease activity or remission, the rheumatology care will be more complete. A rheumatology nurse and a rheumatologist have different perspectives and complement each other. When patients are given the opportunity to meet both professions regularly they are able to receive optimal rheumatology care.

Background: Pain, stiffness and functional restrictions of the joints are the main problems for patients with inflammatory rheumatic diseases. When conventional drugs fail to delay the development of the disease the patient may require biological treatment such as anti-TNF therapy. Some biological drugs are administered in the form of subcutaneous injections by patients themselves. It is therefore important that the patient perspective is focused upon the life-changing situation due to the administration of regular subcutaneous injections.

Objectives: The purpose of this study was to describe variations in how patients with rheumatic diseases conceive their independence of a nurse for the administration of their subcutaneous anti-TNF therapy.

Methods: The study had a descriptive qualitative design with a phenomenographic approach. Twenty interviews were conducted based on a strategic sampling in order to achieve variation in conceptions of the phenomenon in terms of sex, age, marital status, education, illness duration, duration of medication, distance between home-hospital, and experience of intravenous infusions.

Results: Four descriptive categories emerged: 1. Struggling for independence: The patients experienced a struggle and limitations in their lives by the self-administration of the subcutaneous injections. 2. Learning for independence: Patients experienced a learning process by the self-administration of the subcutaneous injections. 3. Participating for independence; Patients experienced control over their lives by themselves administers the subcutaneous injections. 4. Freedom through independence: Patients experienced that they could manage their lives and live as independently as possible by the self-administration of the subcutaneous injections.

Conclusion: Independence of a nurse at the subcutaneous anti-TNF injections is a process. There is a striving for independence in which patients are taking themselves further by learning and participating in drug treatment and then experience the injection provides independence. Patients under treatment with subcutaneous anti-TNF injections are at different phases in the process of independence; this is not depending on how long they have self-administered subcutaneous injections.

Disclosure of Interest: None declared

Citation: Ann Rheum Dis 2010;69(Suppl3):730

Nursing

Background: Fatigue, pain, stiffness, impaired muscle function and impaired physical function are some of the most pronounced symptoms in rheumatoid arthritis (RA) and these may be related to lifestyle habits such as physical activity, diet, smoking and alcohol.There is limited knowledge about how patient with longstanding RA understand their lifestyles habits in relation to their disease and quality of life.

Objectives: To describe experiences of how lifestyle habits relate to quality of life in patients with longstanding RA.

Methods: A qualitative study with a deductive content analysis design, including 17 patients from the Swedish BARFOT (Better Anti-Rheumatic FarmacoTherapy) cohort. BARFOT is a long time follow up study of early RA. Informants were strategically selected by gender (ten women and seven men), age (range 30-84 years), disease duration (8-23 years), function as measured by HAQ, and quality of life as measured by EQ5D. Semi-structured interviews focused on four lifestyle habits (main categories); Physical activity, Diet, Smoking, and Alcohol. The interviews were recorded, transcribed verbatim and coded into subcategories within each of the four main categories.

Results: In patients with longstanding RA quality of life was related to the four given main categories (lifestyle habits). Each main category included two to three subcategories; (1) Physical activity means barrier, opportunities and well-being, (2) Diet means shame, well-being and social relationship, (3) Smoking means reward and fear, and (4) Alcohol means ambivalence and social relationship.

Conclusions: In longstanding RA, lifestyle habits relates to quality of life through both positive and negative experiences. This has to be taken into account in clinical care for a better understanding of how patients conceive and adherer to advice on lifestyle.

References: Scott DL, Wolfe F, Huizinga TW. Rheumatoid arthritis. Lancet. 2010;376(9746):1094-108.

Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qualitative health research. 2005;15(9):1277-88.