Improvement of medication adherence in adolescents and young adults with SLE using web-based education with and without a social media intervention, a pilot study

Pediatric Rheumatology

Volumn 16, Issue 1, 2018, Pages

  Scalzi, Lisabeth V ^a   Hollenbeak, Christopher S ^a   Mascuilli, Emily ^a   Olsen, Nancy ^a  

^a PENNSYLVANIA STATE UNIVERSITY   (United States)

Author keywords

Feasibility; Medication adherence; Self management; Social media; Systemic lupus erythematosus

Indexed keywords

CALCINEURIN INHIBITOR; DIPEPTIDYL CARBOXYPEPTIDASE INHIBITOR; HYDROXYCHLOROQUINE; MYCOPHENOLATE MOFETIL; PREDNISONE; ANTIRHEUMATIC AGENT;

ADOLESCENT; ADULT; ARTICLE; CLINICAL ARTICLE; COHORT ANALYSIS; CONTROLLED STUDY; EDUCATION PROGRAM; FEMALE; FOLLOW UP; HEALTH SURVEY; HUMAN; INTERNET; MALE; MEDICATION COMPLIANCE; ONLINE SYSTEM; OUTCOME ASSESSMENT; PATIENT COMPLIANCE; PILOT STUDY; PRIORITY JOURNAL; QUESTIONNAIRE; RANDOMIZED CONTROLLED TRIAL; SELF CONCEPT; SOCIAL MEDIA; SYSTEMIC LUPUS ERYTHEMATOSUS; WEB BASED EDUCATION; YOUNG ADULT; EDUCATION; FEASIBILITY STUDY; PATIENT EDUCATION; PROCEDURES; PROGRAM EVALUATION; RETROSPECTIVE STUDY; STATISTICS AND NUMERICAL DATA;

ADOLESCENT; ANTIRHEUMATIC AGENTS; EDUCATION, DISTANCE; FEASIBILITY STUDIES; FEMALE; HUMANS; HYDROXYCHLOROQUINE; INTERNET; LUPUS ERYTHEMATOSUS, SYSTEMIC; MALE; MEDICATION ADHERENCE; PATIENT EDUCATION AS TOPIC; PILOT PROJECTS; PROGRAM EVALUATION; RETROSPECTIVE STUDIES; SELF EFFICACY; SOCIAL MEDIA; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 85043776860     PISSN: None     EISSN: 15460096     Source Type: Journal    
DOI: 10.1186/s12969-018-0232-2     Document Type: Article

References (42)

1. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48:177-87.
2. Koneru S, Shishov M, Ware A, Farhey Y, Mongey AB, Graham TB, Passo MH, Houk JL, Higgins GC, Brunner HI. Effectively measuring adherence to medications for systemic lupus erythematosus in a clinical setting. Arthritis Rheum. 2007;57:1000-6.
3. Daleboudt GM, Broadbent E, McQueen F, Kaptein AA. Intentional and unintentional treatment nonadherence in patients with systemic lupus erythematosus. Arthritis Care Res (Hoboken). 2011;63(3):342-50.
4. Ruperto N, Buratti S, Duarte-Salazar C, Pistorio A, Reiff A, Bernstein B, Maldonado-Velazquez MR, Beristain-Manterola R, Maeno N, Takei S, et al. Health-related quality of life in juvenile-onset systemic lupus erythematosus and its relationship to disease activity and damage. Arthritis Rheum. 2004;51:458-64.
5. Ayme S, Kole A, Groft S. Empowerment of patients: lessons from the rare diseases community. Lancet. 2008;371:2048-51.
6. Pagliarello C, Di Pietro C, Paradisi A, Abeni D, Tabolli S. Measuring empowerment in patients with psoriasis: the psoriasis empowerment enquiry in the routine practice (PEER) questionnaire. Eur J Dermatol. 2010;20:200-4.
7. Samoocha D, Bruinvels DJ, Elbers NA, Anema JR, van der Beek AJ. Effectiveness of web-based interventions on patient empowerment: a systematic review and meta-analysis. J Med Internet Res. 2010;12:e23.
8. Stavrositu C, Sundar SS. Can blogs empower women? Designing agencyenhancing and community-building interfaces, Proceedings of CHI'08 extended abstracts on human factors in computing systems, vol. 26; 2008. p. 2781-6.
9. McMillan DW, Chavis DM. Sense of community: a definition and theory. J Community Psychol. 1986;14:6-23.
10. Murray E, Burns J, See TS, Lai R, Nazareth I. Interactive health communication applications for people with chronic disease. Cochrane Database Syst Rev. 2005;19:CD004274.
11. Facing Lupus Together. [ http://www.facinglupustogether.com /].
12. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42:377-81.
13. Yazdany J, Yelin EH, Panopalis P, Trupin L, Julian L, Katz PP. Validation of the systemic lupus erythematosus activity questionnaire in a large observational cohort. Arthritis Rheum. 2008;59:136-43.
14. Karlson EW, Daltroy LH, Rivest C, Ramsey-Goldman R, Wright EA, Partridge AJ, Liang MH, Fortin PR. Validation of a systemic lupus activity questionnaire (SLAQ) for population studies. Lupus. 2003;12:280-6.
15. Balkrishnan R, Rajagopalan R, Camacho FT, Huston SA, Murray FT, Anderson RT. Predictors of medication adherence and associated health care costs in an older population with type 2 diabetes mellitus: a longitudinal cohort study. Clin Ther. 2003;25:2958-71.
16. Siegel D, Lopez J, Meier J. Antihypertensive medication adherence in the Department of Veterans Affairs. Am J Med. 2007;120:26-32.
17. Finley PR, Rens HR, Pont JT, Gess SL, Louie C, Bull SA, Bero LA. Impact of a collaborative pharmacy practice model on the treatment of depression in primary care. Am J Health Syst Pharm. 2002;59:1518-26.
18. Andrade SE, Kahler KH, Frech F, Chan KA. Methods for evaluation of medication adherence and persistence using automated databases. Pharmacoepidemiol Drug Saf. 2006;15:565-74. discussion 575-567
19. Samson CM, Mager D, Frazee S, Yu F. Remission in pediatric inflammatory bowel disease correlates with prescription refill adherence rates. J Pediatr Gastroenterol Nutr. 2017;64:575-9.
20. Ringold S, Grant S, Girdish C, Wallace CA, Sullivan SD. Methotrexate and injectable tumor necrosis factor-alpha inhibitor adherence and persistence in children with rheumatic diseases. J Rheumatol. 2013;40:80-6.
21. Caro JJ, Ishak KJ, Huybrechts KF, Raggio G, Naujoks C. The impact of compliance with osteoporosis therapy on fracture rates in actual practice. Osteoporos Int. 2004;15:1003-8.
22. Kocalevent RD, Levenstein S, Fliege H, Schmid G, Hinz A, Brahler E, Klapp BF. Contribution to the construct validity of the perceived stress questionnaire from a population-based survey. J Psychosom Res. 2007;63:71-81.
23. Barlow JH, Shaw KL, Wright CC. Development and preliminary validation of a children's arthritis self-efficacy scale. Arthritis Rheum. 2001;45:159-66.
24. Moorthy LN, Peterson MG, Baratelli M, Harrison MJ, Onel KB, Chalom EC, Haines K, Hashkes PJ, Lehman TJ. Multicenter validation of a new quality of life measure in pediatric lupus. Arthritis Rheum. 2007;57:1165-73.
25. McMillan DW. Sense of community. J. Community Psychol. 1996;24:315-25.
26. van Uden-Kraan CF, Drossaert CH, Taal E, Seydel ER, van de Laar MA. Participation in online patient support groups endorses patients' empowerment. Patient Educ Couns. 2009;74:61-9.
27. Stinson J, Wilson R, Gill N, Yamada J, Holt J. A systematic review of internet-based self-management interventions for youth with health conditions. J Pediatr Psychol. 2009;34:495-510.
28. Wantland DJ, Portillo CJ, Holzemer WL, Slaughter R, EM MG. The effectiveness of web-based vs. non-web-based interventions: a meta-analysis of behavioral change outcomes. J Med Internet Res. 2004;6:e40.
29. McDonagh JE, Shaw KL, Prescott J, Smith FJ, Roberts R, Gray NJ. "sometimes I feel like a pharmacist": identity and medication use among adolescents with juvenile arthritis. Pediatr Rheumatol Online J. 2016;14:57.
30. Stinson JN, McGrath PJ, Hodnett ED, Feldman BM, Duffy CM, Huber AM, Tucker LB, Hetherington CR, Tse SM, Spiegel LR, et al. An internet-based self-management program with telephone support for adolescents with arthritis: a pilot randomized controlled trial. J Rheumatol. 2010;37:1944-52.
31. Jones PS, Meleis AI. Health is empowerment. ANS Adv Nurs Sci. 1993;15:1-14.
32. van Uden-Kraan CF, Drossaert CH, Taal E, Shaw BR, Seydel ER, van de Laar MA. Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qual Health Res. 2008;18:405-17.
33. Aardoom JJ, Dingemans AE, Boogaard LH, Van Furth EF. Internet and patient empowerment in individuals with symptoms of an eating disorder: a cross-sectional investigation of a pro-recovery focused e-community. Eat Behav. 2014;15:350-6.
34. Bartlett YK, Coulson NS. An investigation into the empowerment effects of using online support groups and how this affects health professional/patient communication. Patient Educ Couns. 2011;83:113-9.
35. Yeh HY, Ma WF, Huang JL, Hsueh KC, Chiang LC. Evaluating the effectiveness of a family empowerment program on family function and pulmonary function of children with asthma: a randomized control trial. Int J Nurs Stud. 2016;60:133-44.
36. Nieuwenhuis MM, Jaarsma T, van Veldhuisen DJ, van der Wal MH. Self-reported versus 'true' adherence in heart failure patients: a study using the medication event monitoring system. Neth Heart J. 2012;20:313-9.
37. Simoni JM, Huh D, Wang Y, Wilson IB, Reynolds NR, Remien RH, Goggin K, Gross R, Rosen MI, Schneiderman N, et al. The validity of self-reported medication adherence as an outcome in clinical trials of adherence-promotion interventions: findings from the MACH14 study. AIDS Behav. 2014;18:2285-90.
38. Guénette L, Moisan J, Préville M, Boyer R. Measures of adherence based on self-report exhibited poor agreement with those based on pharmacy records. J Clin Epidemiol. 2005;58:924-33.
39. Bender B, Wamboldt FS, O'Connor SL, Rand C, Szefler S, Milgrom H, Wamboldt MZ. Measurement of children's asthma medication adherence by self report, mother report, canister weight, and Doser CT. Ann Allergy Asthma Immunol. 2000;85:416-21.
40. Modi AC, Lim CS, Yu N, Geller D, Wagner MH, Quittner AL. A multi-method assessment of treatment adherence for children with cystic fibrosis. J Cyst Fibros. 2006;5:177-85.
41. Koneru S, Kocharla L, Higgins GC, Ware A, Passo MH, Farhey YD, Mongey AB, Graham TB, Houk JL, Brunner HI. Adherence to medications in systemic lupus erythematosus. J Clin Rheumatol. 2008;14:195-201.
42. White M, Stinson JN, Lingley-Pottie P, McGrath PJ, Gill N, Vijenthira A. Exploring therapeutic alliance with an internet-based self-management program with brief telephone support for youth with arthritis: a pilot study. Telemed J E Health. 2012;18:271-6.