Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
BMC Musculoskeletal Disorders
Published in: BMC Musculoskeletal Disorders 1/2017

Open Access 01-12-2017 | Research article

Educational needs in patients with spondyloarthritis in Sweden – a mixed-methods study

Authors: Emma Haglund, Ann Bremander, Stefan Bergman, Ingrid Larsson

Published in: BMC Musculoskeletal Disorders | Issue 1/2017

Login to get access

Abstract

Background

There is a demand for a flexible and individually tailored patient education to meet patients’ specific needs and priorities, but this area has seldom been studied in patients with spondyloarthritis (SpA), a family of inflammatory rheumatic diseases. The aim of the present study was to identify needs and priorities in patient education in patients with SpA. A second aim was to investigate patients’ experiences and preferences of receiving patient education.

Methods

Data collection included a questionnaire survey with the Educational Needs Assessment Tool (ENAT) and interviews, using a mixed-methods design. Patients were identified through a specialist clinic register. Descriptive data are presented as mean with standard deviation, or frequencies. Chi-square test and independent-samples t-test were used for group comparisons. A manifest qualitative conventional content analysis was conducted to explore patients’ experiences and needs in patient education, based on two focus groups (n = 6) and five individual interviews.

Results

Almost half (43%) of the 183 SpA patients had educational needs, particularly regarding aspects of self-help, feelings, and the disease process. More educational needs were reported by women and in patients with higher disease activity, while duration of disease did not affect the needs. The qualitative analysis highlighted the importance of obtaining a guiding, reliable, and easily available patient education for management of SpA. Individual contacts with healthcare professionals were of importance, but newer media were also requested.

Conclusion

There are considerable educational needs in patients with SpA, and education concerning self-help, feelings, and the diseases process were raised as important issues. Healthcare professionals need to consider the importance of presenting varied formats of education based on the experiences and preferences of patients with SpA.
Literature
1.
Newman S, Steed L, Mulligan K. Self-management interventions for chronic illness. Lancet. 2004;364(9444):1523–37.CrossRef
2.
Zangi HA, Ndosi M, Adams J, Andersen L, Bode C, Boström C, et al. EULAR recommendations for patient education for people with inflammatory arthritis. Ann Rheum Dis. 2015;74(6):954–62.CrossRefPubMed
3.
Hoving C, Visser A, Mullen PD, van den Borne B. A history of patient education by health professionals in Europe and North America: from authority to shared decision making education. Patient Educ Couns. 2010;78(3):275–81.CrossRefPubMed
4.
Ndosi M, Bremander A, Hamnes B, Horton M, Kukkurainen ML, Machado P, et al. Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries. Ann Rheum Dis. 2014;73(12):2122–9.CrossRefPubMed
5.
6.
Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns. 2012;86(1):9–18.CrossRefPubMed
7.
Radford S, Carr M, Hehir M, Davis B, Robertson L, Cockshott Z, et al. It's quite hard to grasp the enormity of it': perceived needs of people upon diagnosis of rheumatoid arthritis. Musculoskeletal Care. 2008;6(3):155–67.CrossRefPubMed
8.
Gronning K, Rannestad T, Skomsvoll JF, Rygg LO, Steinsbekk A. Long-term effects of a nurse-led group and individual patient education programme for patients with chronic inflammatory polyarthritis - a randomised controlled trial. J Clin Nurs. 2014;23(7–8):1005–17.CrossRefPubMed
9.
10.
Abaidoo B, Larweh BT. Consumer health informatics: the application of ICT in improving patient-provider Partnership for a Better Health Care. Online J Public Health Inform. 2014;6(2):e188.CrossRefPubMedPubMedCentral
11.
Jafari J, Karimi Moonaghi H, Zary N, Masiello I. Exploring educational needs and design aspects of internet-enabled patient education for persons with diabetes: a qualitative interview study. BMJ Open. 2016;6(10):e013282.CrossRefPubMedPubMedCentral
12.
13.
Haglund E, Bremander AB, Petersson IF, Strombeck B, Bergman S, Jacobsson LT, et al. Prevalence of spondyloarthritis and its subtypes in southern Sweden. Ann Rheum Dis. 2011;70(6):943–8.CrossRefPubMed
14.
Dagfinrud H, Mengshoel AM, Hagen KB, Loge JH, Kvien TK. Health status of patients with ankylosing spondylitis: a comparison with the general population. Ann Rheum Dis. 2004;63(12):1605–10.CrossRefPubMedPubMedCentral
15.
Ozgul A, Peker F, Taskaynatan MA, Tan AK, Dincer K, Kalyon TA. Effect of ankylosing spondylitis on health-related quality of life and different aspects of social life in young patients. Clin Rheumatol. 2006;25(2):168–74.CrossRefPubMed
16.
Hamilton-West KE, Quine L. Living with Ankylosing Spondylitis: the patient's perspective. J Health Psychol. 2009;14(6):820–30.CrossRefPubMed
17.
Haglund E, Bergman S, Petersson IF, Jacobsson LT, Strombeck B, Bremander A. Differences in physical activity patterns in patients with spondyloarthritis. Arthritis Care Res (Hoboken). 2012;64(12):1886–94.CrossRef
18.
Haglund E, Bremander A, Bergman S, Jacobsson LT, Petersson IF. Work productivity in a population-based cohort of patients with spondyloarthritis. Rheumatology (Oxford). 2013;52(9):1708–14.CrossRef
19.
Meesters JJL, Petersson IF, Bergman S, Haglund E, Jacobsson LTH, Bremander A. Sociodemographic and disease-related factors are associated with patient-reported anxiety and depression in spondyloarhtritis patients in the Swedish SpAScania cohort. Clin Rheumatol. 2014;33(11):1649–56.CrossRefPubMed
20.
Combe B, Landewe R, Lukas C, Bolosiu HD, Breedveld F, Dougados M, et al. EULAR recommendations for the management of early arthritis: report of a task force of the European standing Committee for International Clinical Studies Including Therapeutics (ESCISIT). Ann Rheum Dis. 2007;66(1):34–45.CrossRefPubMed
21.
Dagfinrud H, Kvien TK, Hagen KB. Physiotherapy interventions for ankylosing spondylitis. Cochrane Database Syst Rev. 2008;23(1):CD002822.
22.
Braun J, van den Berg R, Baraliakos X, Boehm H, Burgos-Vargas R, Collantes-Estevez E, et al. 2010 update of the ASAS/EULAR recommendations for the management of ankylosing spondylitis. Ann Rheum Dis. 2011;70(6):896–904.CrossRefPubMedPubMedCentral
23.
van den Berg R, Baraliakos X, Braun J, van der Heijde D. First update of the current evidence for the management of ankylosing spondylitis with non-pharmacological treatment and non-biologic drugs: a systematic literature review for the ASAS/EULAR management recommendations in ankylosing spondylitis. Rheumatology (Oxford). 2012;51(8):1388–96.CrossRef
24.
Barlow JH, Barefoot J. Group education for people with arthritis. Patient Educ Couns. 1996;27(3):257–67.CrossRefPubMed
25.
Barlow JH, Turner AP, Wright CC. A randomized controlled study of the arthritis self-management programme in the UK. Health Educ Res. 2000;15(6):665–80.CrossRefPubMed
26.
Kjeken I, Dagfinrud H, Mowinckel P, Uhlig T, Kvien TK, Finset A. Rheumatology care: involvement in medical decisions, received information, satisfaction with care, and unmet health care needs in patients with rheumatoid arthritis and ankylosing spondylitis. Arthritis Rheum. 2006;55(3):394–401.CrossRefPubMed
27.
Giraudet-Le Quintrec JS, Mayoux-Benhamou A, Ravaud P, Champion K, Dernis E, Zerkak D, et al. Effect of a collective educational program for patients with rheumatoid arthritis: a prospective 12-month randomized controlled trial. J Rheumatol. 2007;34(8):1684–91.PubMed
28.
Arvidsson S, Bergman S, Arvidsson B, Fridlund B, Tops AB. Experiences of health-promoting self-care in people living with rheumatic diseases. J Adv Nurs. 2011;67(6):1264–72.CrossRefPubMed
29.
Rodriguez-Lozano C, Juanola X, Cruz-Martinez J, Pena-Arrebola A, Mulero J, Gratacos J, et al. Outcome of an education and home-based exercise programme for patients with ankylosing spondylitis: a nationwide randomized study. Clin Exp Rheumatol. 2013;31(5):739–48.PubMed
30.
Quinones AR, Richardson J, Freeman M, Fu R, O'Neil ME, Motu'apuaka M, et al. Educational group visits for the management of chronic health conditions: a systematic review. Patient Educ Couns. 2014;95(1):3–29.CrossRefPubMed
31.
Ndosi M, Johnson D, Young T, Hardware B, Hill J, Hale C, et al. Effects of needs-based patient education on self-efficacy and health outcomes in people with rheumatoid arthritis: a multicentre, single blind, randomised controlled trial. Ann Rheum Dis. 2016;75(6):1126–32.CrossRefPubMed
32.
Dragoi RG, Ndosi M, Sadlonova M, Hill J, Duer M, Graninger W, et al. Patient education, disease activity and physical function: can we be more targeted? A cross sectional study among people with rheumatoid arthritis, psoriatic arthritis and hand osteoarthritis. Arthritis Res Ther. 2013;15(5):R156.CrossRefPubMedPubMedCentral
33.
Cooksey R, Brophy S, Husain MJ, Irvine E, Davies H, Siebert S. The information needs of people living with ankylosing spondylitis: a questionnaire survey. BMC Musculoskelet Disord. 2012;13:243.CrossRefPubMedPubMedCentral
34.
Giacomelli R, Gorla R, Trotta F, Tirri R, Grassi W, Bazzichi L, et al. Quality of life and unmet needs in patients with inflammatory arthropathies: results from the multicentre, observational RAPSODIA study. Rheumatology (Oxford). 2015;54(5):792–7.CrossRef
35.
Kang R, Passalent L, Morton R, Hawke C, Blair J, Lake A, et al. Utilization of an informational needs assessment to develop an education program for patients with ankylosing spondylitis and related axial spondyloarthritis. In: The European league against rheumatism (EULAR), Madrid, Spain: Annals of the Rheumatic Disease; 2013. Abstract number 991.
36.
Tashakkori A, Teddlie C. Mixed methodology. Thousand Oaks: Sage Publications; 1998.
37.
Tashakkori A, Teddlie C. SAGE Handbook of Mixed Methods in Social & Behavioral Research. Thousand Oaks: SAGE Publications, Inc.; 2010.
38.
Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–12.CrossRefPubMed
39.
Hardware B, Lacey E, Shewan J. Towards the development of a tool to assess educational needs in patiens with arthritis. Clinincal Effectiveness Nurs. 2004;8:111–7.CrossRef
40.
Ndosi M, Tennant A, Bergsten U, Kukkurainen ML, Machado P, de la Torre-Aboki J, et al. Cross-cultural validation of the educational needs assessment tool in RA in 7 European countries. BMC Musculoskelet Disord. 2011;12:110.CrossRefPubMedPubMedCentral
41.
Garrett S, Jenkinson T, Kennedy LG, Whitelock H, Gaisford P, Calin A. A new approach to defining disease status in ankylosing spondylitis: the bath Ankylosing Spondylitis disease activity index. J Rheumatol. 1994;21(12):2286–91.PubMed
42.
Calin A, Garrett S, Whitelock H, Kennedy LG, O'Hea J, Mallorie P, et al. A new approach to defining functional ability in ankylosing spondylitis: the development of the bath Ankylosing Spondylitis functional index. J Rheumatol. 1994;21(12):2281–5.PubMed
43.
Meesters JJ, Vliet Vlieland TP, Hill J, Ndosi ME. Measuring educational needs among patients with rheumatoid arthritis using the Dutch version of the educational needs assessment tool (DENAT). Clin Rheumatol. 2009;28(9):1073–7.CrossRefPubMedPubMedCentral
44.
TheEuroQulGroup. EuroQol - a new facility for the measurement of health-Related Quality of Life. Health Policy. 1990;16(3):199–208.
45.
Kvale S, Brinkmann S. InterViews: learning the craft of qualitative research interviewing. Los Angeles: Sage Publications; 2015.
46.
Bremander A, Haglund E, Bergman S, Ndosi M. The educational needs of patients with undifferentiated spondyloarthritis. In: Poster presentation EULAR; 2017. FRI0733_HRP.
47.
Bergsten U, Bergman S, Fridlund B, Arvidsson B. "Delivering knowledge and advice": Healthcare providers' experiences of their interaction with patients' management of rheumatoid arthritis. Int J Qual Stud Health Well-being. 2011;6(4). doi:10.​3402/​qhw.​v6i4.​8473.
48.
Roussou E, Sultana S. Spondyloarthritis in women: differences in disease onset, clinical presentation, and bath Ankylosing Spondylitis disease activity and functional indices (BASDAI and BASFI) between men and women with spondyloarthritides. Clin Rheumatol. 2011;30(1):121–7.CrossRefPubMed
49.
Richter JG, Becker A, Koch T, Nixdorf M, Schacher B, Monser R, et al. Internet use in rheumatology outpatients in 2006: gender less important. Clin Exp Rheumatol. 2009;27(1):15–21.PubMed
50.
Polit DF, Beck CT. Is there still gender bias in nursing research? An update. Res Nurs Health. 2013;36(1):75–83.CrossRefPubMed
Metadata
Title
Educational needs in patients with spondyloarthritis in Sweden – a mixed-methods study
Authors
Emma Haglund
Ann Bremander
Stefan Bergman
Ingrid Larsson
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Musculoskeletal Disorders / Issue 1/2017
Electronic ISSN: 1471-2474
DOI
https://doi.org/10.1186/s12891-017-1689-8

Other articles of this Issue 1/2017

BMC Musculoskeletal Disorders 1/2017 Go to the issue

Research article

Comparison of continuous infusion versus bolus injection of factor concentrates for blood management after total knee arthroplasty in patients with hemophilia

Research article

Associations between multimorbidity and additional burden for working-age adults with specific forms of musculoskeletal conditions: a cross-sectional study

Research article

Finite Element Analysis of porously punched prosthetic short stem virtually designed for simulative uncemented Hip Arthroplasty

Research article

Metacarpal bone loss in patients with rheumatoid arthritis estimated by a new Digital X-ray Radiogrammetry method – initial results

Research article

Comparison and analysis of reoperations in two different treatment protocols for trochanteric hip fractures – postoperative technical complications with dynamic hip screw, intramedullary nail and Medoff sliding plate

Research article

Accuracy of clinical neurological examination in diagnosing lumbo-sacral radiculopathy: a systematic literature review