Top

02-04-2018 | Quality of life | Review | Article

How do patients with systemic autoimmune rheumatic disease perceive the use of their medications: a systematic review and thematic synthesis of qualitative research

Journal: BMC Rheumatology

Authors: Hans Haag, Tim Liang, J. Antonio Avina-Zubieta, Mary A. De Vera

Publisher: BioMed Central

Abstract

Background

Pharmacotherapy is paramount to the management of systemic autoimmune rheumatic diseases (SARDs), yet there is sub-optimal adherence and limited adherence interventions. To understand how to better support patients’ medication use, our two-fold objectives were: 1) to conduct a systematic review of qualitative research studies of medication taking among SARD patients; and 2) to thematically synthesize qualitative research studies to obtain SARD patients’ perspectives and experiences with medication use.

Methods

We conducted a search of MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, and Social Sciences Citation Index databases to identify qualitative research studies exploring views on medication use among patients with SARDs, their healthcare providers, or caregivers. We used thematic synthesis to combine data from selected studies, and identify analytical themes on SARD patients’ perspectives and experiences with medication use.

Results

Our systematic review identified 18 studies. Thematic synthesis identified seven analytical themes: 1) effects of medications on emotional and social well-being, 2) impacts of healthcare provider relationships on treatment, 3) gaining control over treatment, 4) fear and concern with side effects of treatment, 5) understanding the importance of treatment, 6) practical barriers to taking medication, and 7) motivation towards adherence to treatment.

Conclusion

This systematic review and thematic synthesis contributes to better understanding of SARDs patients’ perspectives on medication use. Given the paucity of existing adherence interventions targeting this patient population, our study has certain practical implications for care, namely the need to address emotional and social impacts of medication use and the necessity of establishing a meaningful and trusting professional relationship with patients.

Firestein GS, Kelley WN, Sherine GE, McInnes IB, O’Dell JR. Kelley’s textbook of rheumatology. 9th ed. Philadelphia: Elsevier/Saunders; 2013.

Bertsias GK, Tektonidou M, Amoura Z, Aringer M, Bajema I, Berden JHM, Boletis J, Cervera R, Dörner T, Doria A, et al. Joint European League Against Rheumatism and European Renal Association–European Dialysis and Transplant Association (EULAR/ERA-EDTA) recommendations for the management of adult and paediatric lupus nephritis. Ann Rheum Dis. 2012;71(11):1771–82.CrossRefPubMedPubMedCentral

Kowal-Bielecka O, Fransen J, Avouac J, Becker M, Kulak A, Allanore Y, Distler O, Clements P, Cutolo M, Czirjak L, et al. Update of EULAR recommendations for the treatment of systemic sclerosis. Ann Rheum Dis. 2017;76(8):1327–39.CrossRefPubMed

Mehat P, Atiquzzaman M, Esdaile JM, Avina-Zubieta A, De Vera MA. Medication non-adherence in systemic lupus erythematosus: a systematic review. Arthritis Care Res. 2017;69(11):1706–13.CrossRef

Hromadkova L, Soukup T, Cermakova E, Vlcek J. Drug compliance in patients with systemic scleroderma. Clin Rheumatol. 2012;31(11):1577–83.CrossRefPubMed

Iudici M, Russo B, Mitidieri M, Cuomo G, Valentini G. Glucocorticoids in systemic sclerosis: patients’ beliefs and treatment adherence. Scand J Rheumatol. 2015;44(3):229–37.CrossRefPubMed

Galo JS, Mehat P, Rai SK, Avina-Zubieta A, De Vera MA. What are the effects of medication adherence interventions in rheumatic diseases: a systematic review. Ann Rheum Dis. 2016;75(4):667–73.CrossRefPubMed

Feldman CH, Yazdany J, Guan H, Solomon DH, Costenbader KH. Medication nonadherence is associated with increased subsequent acute care utilization among medicaid beneficiaries with systemic lupus erythematosus. Arthritis Care Res. 2015;67(12):1712–21.CrossRef

Julian LJ, Yelin E, Yazdany J, Panopalis P, Trupin L, Criswell LA, Katz P. Depression, medication adherence, and service utilization in systemic lupus erythematosus. Arthritis Care Res. 2009;61(2):240–6.CrossRef

10.

Pyne JM, Fischer EP, Gilmore L, McSweeney JC, Stewart KE, Mittal D, Bost JE, Valenstein M. Development of a patient-centered antipsychotic medication adherence intervention. Health Educ Behav. 2014;41(3):315–24.CrossRefPubMed

11.

Marshall IJ, Wolfe CD, McKevitt C. Lay perspectives on hypertension and drug adherence: systematic review of qualitative research. BMJ. 2012;345:e3953.CrossRefPubMedPubMedCentral

12.

Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8(1):45.CrossRefPubMedPubMedCentral

13.

Ring N, Jepson R, Ritchie K. Methods of synthesizing qualitative research studies for health technology assessment. Int J Technol Assess Health Care. 2011;27(4):384–90.CrossRefPubMed

14.

Sutanto B, Singh-Grewal D, McNeil HP, O’Neill S, Craig JC, Jones J, Tong A. Experiences and perspectives of adults living with systemic lupus erythematosus: thematic synthesis of qualitative studies. Arthritis Care Res. 2013;65(11):1752–65.CrossRef

15.

Steiner JF, Earnest MA. The language of medication-taking. Ann Int Med. 2000;132(11):926–30.CrossRefPubMed

16.

Mishra S, Satapathy SK, Mishra D. Improved search technique using Wildcards or Truncation. Chennai: International Conference on Intelligent Agent & Multi-Agent Systems; 2009. p. 1–4. https://doi.org/10.1109/IAMA.2009.5228080.

17.

Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol. 2009;9:59.CrossRefPubMedPubMedCentral

18.

Persell SD, Kho AN, Thompson JA, Baker DW. Improving hypertension quality measurement using electronic health records. Med Care. 2009;47(4):388–94.CrossRefPubMed

19.

Applebaum MA, Lawson EF, Von Scheven E. Perception of transition readiness and preferences for use of technology in transition programs: Teens’ ideas for the future. Int J Adolesc Med Health. 2013;25(2):119–25.CrossRefPubMed

20.

Carpenter DM, Meador AE, Elstad EA, Hogan SL, DeVellis RF. The impact of vasculitis on patients’ social participation and friendships. Clin Exp Rheumatol. 2012;30(1):S15–21.PubMedPubMedCentral

21.

Cleanthous S, Newman SP, Shipley M, Isenberg DA, Cano SJ. What constitutes uncertainty in systemic lupus erythematosus and rheumatoid arthritis? Psychol Health. 2013;28(2):171–88.CrossRefPubMed

22.

Feldman CH, Bermas BL, Zibit M, Fraser P, Todd DJ, Fortin PR, Massarotti E, Costenbader KH. Designing an intervention for women with systemic lupus erythematosus from medically underserved areas to improve care: a qualitative study. Lupus. 2013;22(1):52–62.CrossRefPubMed

23.

Hale ED, Radvanski DC, Hassett AL. The man-in-the-moon face: a qualitative study of body image, self-image and medication use in systemic lupus erythematosus. Rheumatology (Oxford). 2015;54(7):1220–5.CrossRef

24.

Knight A, Vickery M, Fiks AG, Barg FK. The illness experience of youth with lupus/mixed connective tissue disease: a mixed methods analysis of patient and parent perspectives. Lupus. 2016;25(9):1028–39.CrossRefPubMed

25.

Lackner A, Ficjan A, Stradner MH, Hermann J, Unger J, Stamm T, Stummvoll G, Dur M, Graninger WB, Dejaco C. It’s more than dryness and fatigue: the patient perspective on health-related quality of life in Primary Sjogren’s Syndrome - a qualitative study. PLoS One. 2017;12(2):12.CrossRef

26.

Larsson I, Arvidsson S, Bergman S, Arvidsson B. Patients’ perceptions of drug information given by a rheumatology nurse. Musculoskelet. 2010;8(1):36.CrossRef

27.

Mathias SD, Berry P, De Vries J, Askanase A, Pascoe K, Colwell HH, Chang DJ. Development of the Systemic Lupus Erythematosus Steroid Questionnaire (SSQ): a novel patient-reported outcome tool to assess the impact of oral steroid treatment. Health Qual Life Outcomes. 2017;15:1–9.CrossRef

28.

Mathias SD, Berry P, Pascoe K, de Vries J, Askanase AD, Colwell HH, Chang DJ. Treatment satisfaction in systemic lupus erythematosus: development of a patient-reported outcome measure. J Clin Rheumatol. 2017;23(2):94–101.CrossRefPubMedPubMedCentral

29.

Mazzoni D, Cicognani E. Problematic social support from patients’ perspective: the case of systemic lupus erythematosus. Soc Work Health Care. 2014;53(5):435–45.CrossRefPubMed

30.

Mooney J, Poland F, Spalding N, Scott DGI, Watts RA. In one ear and out the other – it’s a lot to take in’: a qualitative study exploring the informational needs of patients with ANCA-associated vasculitis. Musculoskelet. 2013;11(1):51–9.CrossRef

31.

Neville C, Da Costa D, Mill C, Rochon M, Avina-Zubieta JA, Pineau CA, Eng D, Fortin PR. The needs of persons with lupus and health care providers: a qualitative study aimed toward the development of the Lupus Interactive Navigator (TM). Lupus. 2014;23(2):176–82.CrossRefPubMed

32.

Singh JA, Qu H, Yazdany J, Chatham W, Shewchuk R. Minorities with lupus nephritis and medications: a study of facilitators to medication decision-making. Arthritis Res Ther. 2015;17(1):367.CrossRefPubMedPubMedCentral

33.

Suarez-Almazor M, Maria ES-A, Michael AK, Aimee KR, Maureen M. Disease and symptom burden in systemic sclerosis: a patient perspective. J Rheumatol. 2007;34(8):1718.PubMed

34.

Tunnicliffe DJ, Singh-Grewal D, Chaitow J, MacKie F, Manolios N, Lin MW, O’Neill SG, Ralph AF, Craig JC, Tong A. Lupus means sacrifices: perspectives of adolescents and young adults with systemic lupus erythematosus. Arthritis Care Res. 2016;68(6):828–37.CrossRef

35.

Alparslan GB, Kapucu SS. The changes and difficulties experienced by patients using steroids. J Renal Care. 2010;36(2):81–9.CrossRef

36.

Brennan KA, Creaven AM. Living with invisible illness: social support experiences of individuals with systemic lupus erythematosus. Qual Life Res. 2016;25(5):1227–35.CrossRefPubMed

37.

Backman CL, Smith LDF, Smith S, Montie PL, Suto M. Experiences of mothers living with inflammatory arthritis. Arthritis Care Res. 2007;57(3):381–8.CrossRef

38.

Beckerman NL. Living with lupus: a qualitative report. Soc Work Health Care. 2011;50(4):330–43.CrossRefPubMed

39.

Carder PC, Vuckovic N, Green CA. Negotiating medications: patient perceptions of long-term medication use. J Clin Pharm Ther. 2003;28(5):409–17.CrossRefPubMed

40.

Chambers SA, Raine R, Rahman A, Isenberg D. Why do patients with systemic lupus erythematosus take or fail to take their prescribed medications? A qualitative study in a UK cohort. Rheumatology (Oxford). 2009;48(3):266–71.CrossRef

41.

Gallop K, Nixon A, Swinburn P, Sterling KL, Naegeli AN, Silk MET. Development of a conceptual model of health-related quality of life for systemic lupus erythematosus from the patient’s perspective. Lupus. 2012;21(9):934–43.CrossRefPubMed

42.

Garcia Popa-Lisseanu MG, Greisinger A, Richardson M, O’Malley KJ, Janssen NM, Marcus DM, Tagore J, Suarez-Almazor ME. Determinants of treatment adherence in ethnically diverse, economically disadvantaged patients with rheumatic disease. J Rheumatol. 2005;32(5):913–9.PubMed

43.

Karlen A. Positive sexual effects of chronic illness: case studies of women with lupus (SLE). Sex Disabil. 2002;20(3):191–208.CrossRef

44.

Kumar K, Gordon C, Barry R, Shaw K, Horne R, Raza K. It’s like taking poison to kill poison but i have to get better’: a qualitative study of beliefs about medicines in rheumatoid arthritis and systemic lupus erythematosus patients of South Asian origin. Lupus. 2011;20(8):837–44.CrossRefPubMed

45.

Mattsson M, Moller B, Stamm T, Gard G, Bostrom C. Uncertainty and opportunities in patients with established systemic lupus erythematosus: a qualitative study. Musculoskelet. 2012;10(1):1–12.CrossRef

46.

McElhone K, Abbott J, Gray J, Williams A, Teh LS. Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study. Lupus. 2010;19(14):1640–7.CrossRefPubMed

47.

Mendelson C. Gentle hugs: women living with lupus...proceedings of the communicating nursing research conference and WIN assembly, ‘Responding to societal imperatives through discovery and innovation’, held April 10-12, 2003, Scottsdale, Arizona. Commun Nurs Res. 2003;36:210. 211p

48.

Mendelson C. Managing a medically and socially complex life: women living with lupus. Qual Health Res. 2006;16(7):982–97.CrossRefPubMed

49.

Miles A. Of butterflies and wolves: enacting lupus transformations on the internet. Anthropol Med. 2009;16(1):1–12.CrossRefPubMed

50.

Mendelson C. Diagnosis: a liminal state for women living with lupus. Health Care Women Int. 2009;30(5):390–407.CrossRefPubMed

51.

Chambers S, Raine R, Rahman A, Hagley K, De Ceulaer K, Isenberg D. Factors influencing adherence to medications in a group of patients with systemic lupus erythematosus in Jamaica. Lupus. 2008;17(8):761–9.CrossRefPubMed

52.

Waldron N, Brown S, Hewlett S, Elliott B, McHugh N, McCabe C. It’s more scary not to know’: a qualitative study exploring the information needs of patients with systemic lupus erythematosus at the time of diagnosis. Musculoskelet. 2011;9(4):228–38.CrossRef

53.

Mancuso C, Perna M, Sargent A, Salmon J. Perceptions and measurements of physical activity in patients with systemic lupus erythematosus. Lupus. 2011;20(3):231–42.CrossRefPubMed

54.

Goodman D, Morrissey S, Graham D, Bossingham D. Illness representations of systemic lupus erythematosus. Qual Health Res. 2005;15(5):606–19.CrossRefPubMed

55.

Baker JA, Wiginton K. Perceptions and coping among women living with lupus. Am J Health Behav. 1997;21(2):129–36.

56.

Ow YLM, Thumboo J, Cella D, Cheung YB, Fong KY, Wee HL. Domains of health-related quality of life important and relevant to multiethnic English-speaking Asian systemic lupus erythematosus patients: a focus group study. Arthritis Care Res (Hoboken). 2011;63(6):899–908.CrossRef

57.

Hale ED, Treharne GJ, Norton Y, Lyons AC, Douglas KMJ, Erb N, Kitas GD. ‘Concealing the evidence’: the importance of appearance concerns for patients with systemic lupus erythematosus. Lupus. 2006;15(8):532–40.CrossRefPubMed

58.

Kahana S, Drotar D, Frazier T. Meta-analysis of psychological interventions to promote adherence to treatment in pediatric chronic health conditions. J Pediatr Psychol. 2008;33(6):590–611.CrossRefPubMed

59.

Cabassa LJ, Camacho D, Velez-Grau CM, Stefancic A. Peer-based health interventions for people with serious mental illness: a systematic literature review. J Psychiatr Res. 2017;84:80–9.CrossRefPubMed

60.

Webel AR, Okonsky J, Trompeta J, Holzemer WL. A systematic review of the effectiveness of peer-based interventions on health-related behaviors in adults. Am J Public Health. 2010;100(2):247–53.CrossRefPubMedPubMedCentral

61.

Kur J, Koehler B. Rheumatologist demographics in British Columbia: a looming crisis. BC Med J. 2011;53(2):128–31.

62.

Carroll C, Booth A. Quality assessment of qualitative evidence for systematic review and synthesis: is it meaningful, and if so, how should it be performed? Res Synth Methods. 2015;6(2):149–54.CrossRefPubMed

63.

Doyle LH. Synthesis through meta-ethnography: paradoxes, enhancements, and possibilities. Qual Res. 2003;3(3):321–44.CrossRef