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Patient Education in Spondyloarthritis Should be Guiding, Reliable and Available and Presented in Varied Formats
Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS). Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden.ORCID iD: 0000-0002-1445-5247
Halmstad University, School of Business, Engineering and Science, Biological and Environmental Systems (BLESS), Biomechanics and Biomedicine. Lund University, Lund, Sweden & Spenshult Research and Development Center, Halmstad, Sweden.ORCID iD: 0000-0002-8081-579X
Lund University, Lund, Sweden; Spenshult Research and Development Center, Halmstad, Sweden & The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID iD: 0000-0002-6294-538X
Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health promotion and disease prevention. Spenshult Research and Development Center, Halmstad, Sweden.ORCID iD: 0000-0002-4341-660X
2015 (English)In: Arthritis & Rheumatology, ISSN 2326-5191, E-ISSN 2326-5205, Vol. 67, no Suppl. S10, 1196Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Background/Purpose:

The treatment target for axial spondyloarthritis (SpA) is to maximize health-related quality of life (HRQoL) by controlling disease activity and improving functioning. The treatment cornerstones are a combination of patient education, pharmacological and non-pharmacological treatment. Health professionals are familiar with providing patient education but the knowledge is scarce concerning how this education is experienced by the patients.

The aim was to describe patients’ experiences of education in SpA management.

Methods:

The study had a descriptive design with a qualitative conventional content analysis approach performed in seven steps in accordance with Graneheim & Lundman (1). The analysis aimed to describe and preserve contextual meanings. After coding and subgrouping meaningful parts of the text were merged into categories. Eleven interviews were conducted between 2014-2015 in patients with SpA based on a strategic sampling in order to achieve variation with regard to sex (7 men, 4 women), age (38-66 years), subdiagnoses (5 patients with AS, 6 with USpA), quality of life (EQ5D 0.29-1.0), disease activity (BASDAI 1-6), physical function (BASFI 0-5), and global health (BASG 0-7) .

Results:

Three categories representing patients’ experiences of patient education in disease management emerged; guiding education, reliable education and available education. Guiding education comprised SpA management including disease knowledge such as symptoms, prognosis, treatment, self-management, climate impact, heredity, and assisting devices. Reliable education meant how and by whom the education was communicated and was considered reliable if it was based on science and communicated by specialists, for example by physician, nurse, PT, dietician and senior patients with experience of rheumatic diseases. The patients experienced difficulties in assessing the large flow of education coming from various sources. Individualized education also increased the reliability. Available education meant that the education can and should be presented in varied formats, and that the amount of information could be chosen. The education could be given orally (through meetings, videos, lectures), in writing (by pamphlets, e-mails, journals, webpages) or obtained through own personal experiences. There were requests to utilize newer media like skype, video and chat forums. Furthermore, individual contacts with healthcare professionals when needed were of importance.

Conclusion:

This study highlights the importance of obtaining a guiding, reliable and available patient education for management of SpA. Health care professionals need to consider the importance of presenting varied formats of education based on patients’ experiences and expectations.

References:

1.Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse education today 2004;24(2):105-12.

Place, publisher, year, edition, pages
Hoboken, NJ: John Wiley & Sons, 2015. Vol. 67, no Suppl. S10, 1196
Keyword [en]
Education, management, patient, qualitative, spondylarthritis
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hh:diva-29846DOI: 10.1002/art.39448ISI: 000370860202460OAI: oai:DiVA.org:hh-29846DiVA: diva2:875162
Conference
2015 ACR/ARHP Annual Meeting, San Francisco, CA, USA, November 6-11, 2015
Available from: 2015-11-30 Created: 2015-11-30 Last updated: 2016-11-24Bibliographically approved

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