Common elements and features of a mobile-based self-management system for people living with HIV

Authors

  • Reza Safdari Ph.D. of Health Information Management, Professor, Department of Health Information Management, Tehran University of Medical Sciences, Tehran, Iran

Keywords:

Data element, Technical, Self-management, HIV, AIDS

Abstract

Background: In recent years, mobile-based applications have become important technologies to the delivery of healthcare around the world. Mobile-based self-management systems with standard features for providing, evaluating, and improving HIV care are significantly required in developing countries.  Objective: To determine the common elements of a mobile-based self-management system for people living with HIV (PLWH). Methods: This cross-sectional study was done in two main phases in 2017. In the first phase, a review was conducted in relevant databases such as; PubMed, Scopus, Up To Date, and Web of Science. The keywords used to search for resources were as follows; Self-care, Self-management, Data elements, Minimum data set, Mobile application, Mobile health, and HIV/AIDS. In the second phase, the infectious diseases specialists and health information managers affiliated with Tehran University of Medical Sciences were consulted to score identified elements by a questionnaire. Frequency and mean of collected data were calculated using SPSS software (version 19).  Results: By full-text reviewing of 9 related articles, the identified elements were justified in 3 main categories and 37 subcategories including: clinical data elements (17), technical capabilities (12) and demographic data elements (8). According to the findings, among the clinical category, 11 data elements were selected by the statistical population. Among the identified technical capabilities, 11 features were selected. Moreover, 6 data elements were selected as the demographic category.  Conclusion: We obtained data elements and technical capabilities of a mobile-based self-management system for people living with HIV. Using these elements and features, designing of self-management system architecture will be possible. Self-management skills of PLWH and their communication with healthcare providers will improve by using this system.

References

Joint United Nations Programme on HIV/AIDS (UNAIDS) 2010. UNAIDS Report on the global AIDS

epidemic 2010. WHO Library Cataloguing-in-Publication Data. Available from: http: www.unaids.org.

Kramer A, Kretzschmar M, Krickeberg K. Modern infectious disease epidemiology: Concepts, methods,

mathematical models, and public health. Springer Science & Business Media; 2010.

HIV/AIDS fact sheet. World Health Organization. Available from:

http://www.who.int/mediacentre/factsheets/fs360/en/. doi: 10.1007/978-0-387-93835-6.

About HIV/AIDS. Centers for disease control and prevention. Available from:

https://www.cdc.gov/hiv/basics/whatishiv.html.

Stewart NM. Self-management programs for people with HIV. HIV Australia, 2010; 8(1): 1-6.

Millard T, McDonald K, Elliott J, Slavin S, Rowell S, Girdler S. Informing the development of an online

self-management program for men living with HIV: a needs assessment. BMC Public Health. 2014;

(1209): 1-9. doi: 10.1186/1471-2458-14-1209.

Sullivan KM, Inouye J. Feasibility of a Group-Based Self-Management Program for Ethnically Diverse

People with HIV/AIDS in Hawaii. Asian / Pacific Island Nursing Journal, 2015; 1(2): 1-11.

Igodan CE, Akinyokun OC, Olatubosun O. Online Fuzzy-Logistic Knowledge Warehousing and Mining

Model for the Diagnosis and Therapy of HIV/AIDS. International Journal of Computational Science and

Information Technology. 2013; 1(3): 27-40. doi: 10.5121/ijcsity.2013.1304.

Iribarren S, Siegel K, Hirshfield S, Olender S, Voss J, Krongold J, et al. Self-Management Strategies for

Coping with Adverse Symptoms in Persons Living with HIV with HIV Associated Non-AIDS Conditions.

AIDS and Behavior. 2017. doi: 10.1007/s10461-017-1786-6.

Mohammadzadeh N, Safdari R. Patient monitoring in mobile health: opportunities and challenges. Medical

Archives. 2014; 68(1): 57. doi: 10.5455/medarh.2014.68.57-60. PMID: 24783916, PMCID: PMC4272470.

Mehraeen E, Ayatollahi H, Ahmadi M. Health Information Security in Hospitals: the Application of

Security Safeguards. Acta Inform Med. 2016; 24(1): 47-50. doi: 10.5455/aim.2016.24.47-50. PMID:

, PMCID: PMC4789743.

Mohammadzadeh N, Safdari R, Rahimi A. Cancer care management through a mobile phone health

approach: key considerations. Asian Pacific Journal of Cancer Prevention. 2013; 14(9): 4961-4. doi:

7314/APJCP.2013.14.9.4961. PMID: 24175759.

Kirk GD, Himelhoch SS, Westergaard RP, Beckwith CG. Using mobile health technology to improve HIV

care for persons living with HIV and substance abuse. AIDS Research and Treatment. 2013; 194613: 1-4.

doi: 10.1155/2013/194613.

Parmanto B, Pramana G, Daihua XY, Fairman AD, Dicianno BE. Development of mHealth system for

supporting self-management and remote consultation of skincare. BMC Medical Informatics and Decision

Making. 2015; 15(114): 1-8. doi: 10.1186/s12911-015-0237-4.

Mavhemwa PM, Muzurura O. Evaluating the effectiveness of m-health based Diabetes Self-Management

and community based networking. International Journal of Emerging Trends & Technology in Computer

Science. 2013; 2(4): 166-184.

Mbuagbaw L, Mursleen S, Lytvyn L, Smieja M, Dolovich L, Thabane L. Mobile phone text messaging

interventions for HIV and other chronic diseases: an overview of systematic reviews and framework for

evidence transfer. BMC Health Services Research,.2015; 15(33): 1-16. doi: 10.1186/s12913-014-0654-6.

Ramanathan N, Swendeman D, Comulada WS, Estrin D, Rotheram-Borus MJ. Identifying preferences for

mobile health applications for self-monitoring and self-management: Focus group findings from HIV- positive persons and young mothers. International journal of medical informatics. 2013; 82(4): e38-46.

Abdelhak M, Grostick S, Hanken MA. Health Information: Management of a Strategic Resource. 3rd ed

Philadelphia: Elsevier; 2007.

Fjeldsoe BS, Marshall AL, Miller YD. Behavior change interventions delivered by mobile telephone short- message service. Am J Prev Med. 2009; 36(2): 165–73. doi: 10.1016/j.amepre.2008.09.040. PMID:

Cole-Lewis H, Kershaw T. Text messaging as a tool for behavior change in disease prevention and

management. Epidemiol Rev. 2010; 32(1): 56–69. doi: 10.1093/epirev/mxq004. PMID: 20354039,

PMCID: PMC3082846.

Belzer ME, Naar-King S, Olson J, Sarr M, Thornton S, Kahana SY, et al. Adolescent Medicine Trials

Network for HIV/AIDS Interventions. The use of cell phone support for non-adherent HIV-infected youth

and young adults: an initial randomized and controlled intervention trial. AIDS and Behavior. 2014; 18(4):

-96. doi: 10.1007/s10461-013-0661-3. PMID: 24271347, PMCID: PMC3962719.

Johns ML. Health Information Management Technology: An Applied Approach. Chicago: Am Health Info

Manage Assoc; 2002.

Hosseini AS, Moghaddasi H, Jahanbakhsh M. designing minimum data sets of diabetes mellitus: basis of

effectiveness indicators of diabetes management. Health Info Manage. 2010; 7(3): 330–40.

New Zealand Health Information Service. National Minimum Dataset (Hospital Events): NMDS; 2010.

Available from: www.moh. govt.nz/moh.nsf/indexmh/dataandstatistics-technicalnmds/.

Guidelines for the establishment and management of clinical registries. Australian Commission on Safety

and Quality in Health Care. Sydney, Australia; 2009.

Tierney WM, Beck EJ, Gardner RM, Musick B, Shields M, Shiyonga NM, et al. Viewpoint: a pragmatic

approach to constructing a minimum data set for care of patients with HIV in developing countries. J Am

Med Inform Assoc. 2006; 13(3): 253–60. doi: 10.1197/jamia.M2005. PMID: 16501175, PMCID:

PMC1513663.

Ahmadi M, Mohammadi A, Chraghbaigi R, Fathi T, Baghini MS. Developing a Minimum Data Set of the

Information Management System for Orthopedic Injuries in Iran. Iran Red Crescent Med J. 2014; 16(7):

e17020.

Tierney WM, Beck EJ, Gardner RM, Musick B, Shields M, Shiyonga NM, Spohr MH. a pragmatic

approach to constructing a minimum data set for care of patients with HIV in developing countries. Journal

of the American Medical Informatics Association. 2006; 13(3): 253-60.

Fleishman JA, Yehia BR, Moore RD, Gebo KA, HIV Research Network. The economic burden of late

entry into medical care for patients with HIV infection. Medical care. 2010; 48(12): 1071. doi:

1097/MLR.0b013e3181f81c4a. PMID: 21063228, PMCID: PMC3022268.

Chen RY, Accortt NA, Westfall AO, Mugavero MJ, Raper JL, Cloud GA, et al. Distribution of health care

expenditures for HIV-infected patients. Clinical Infectious Diseases. 2006; 42(7): 1003-10. doi:

1086/500453. PMID: 16511767.

Nematollahi M, Khalesi N, Moghaddasi H. A Comparative Study of Management Information System for

HIV / AIDS in selected countries. Payesh. 2012; 11(4): 425-33.

Blackstock OJ, Patel VV, Cunningham CO. Use of technology for HIV prevention among adolescent and

adult women in the United States. Curr HIV/AIDS Rep. 2015; 12(4): 489-99. doi: 10.1007/s11904-015- 0287-3. PMID: 26412086, PMCID: PMC4643397.

Thompson MA, Mugavero MJ, Amico KR, Cargill VA, Chang LW, Gross R, et al. Guidelines for

improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence- based recommendations from an International Association of Physicians in AIDS Care panel. Annals of

internal medicine. 2012; 156(11): 817-33. doi: 10.7326/0003-4819-156-11-201206050-00419. PMID:

, PMCID: PMC4044043.

Fan V, Duran D, Silverman R, Glassman A. HIV/AIDs intervention packages in five countries: a review of

budget data. Center for Global Development Policy Paper. 2013; (33).

Tierney WM, Beck EJ, Gardner RM, Musick B, Shields M, Shiyonga NM, et al. A pragmatic approach to

constructing a minimum data set for care of patients with HIV in developing countries. Journal of the

American Medical Informatics Association. 2006; 13(3): 253-60. doi: 10.1197/jamia.M2005. PMID:

, PMCID: PMC1513663.

Tierney WM, Rotich JK, Hannan TJ, Siika AM, Biondich PG, Mamlin BW, et al. The AMPATH medical

record system: creating, implementing, and sustaining an electronic medical record system to support

HIV/AIDS care in western Kenya. Studies in health technology and informatics. 2007; 129(1): 372. PMID:

McDonald K, Slavin S, Pitts MK, Elliott JH, HealthMap Project Team. Chronic disease self-management

by People With HIV. Qualitative health research. 2016; 26(6): 863-70. doi: 10.1177/1049732315600415.

PMID: 26290540.

van Olmen J, Schellevis F, Van Damme W, Kegels G, Rasschaert F. Management of chronic diseases in

sub-Saharan Africa: cross-fertilisation between HIV/AIDS and diabetes care. Journal of tropical medicine.

; 2012.

Schnall R, Bakken S, Rojas M, Travers J, Carballo-Dieguez A. mHealth technology as a persuasive tool for

treatment, care and management of persons living with HIV. AIDS Behav. 2015; 19(2): 81-9. doi:

1007/s10461-014-0984-8. PMID: 25572830, PMCID: PMC4497931.

Henry BL, Moore DJ. Preliminary Findings Describing Participant Experience With iSTEP, an mHealth

Intervention to Increase Physical Activity and Improve Neurocognitive Function in People Living with

HIV. J Assoc Nurses AIDS Care. 2016; 27(4): 495-511. doi: 10.1016/j.jana.2016.01.001. PMID:

, PMCID: PMC4903897.

Niakan S, Mehraeen E, Noori T, Gozali E. Web and Mobile Based HIV Prevention and Intervention

Programs Pros and Cons – A Review. Studies in Health Technology and Informmatics. 2017; 236: 319-27.

PMID: 28508813.

Stoller EP, Webster NJ, Blixen CE, McCormick RA, Perzynski AT, Kanuch SW, et al. Lay management of

chronic disease: a qualitative study of living with hepatitis C infection. Am J Health Behav. 2009; 33(4):

-90. doi: 10.5993/AJHB.33.4.4. PMID: 19182983, PMCID: PMC2720158.

Phillips KA, Epstein DH, Mezghanni M, Vahabzadeh M, Reamer D, Agage D, et al. Smartphone delivery

of mobile HIV risk reduction education. AIDS Res Treat. 2013; 2013: 231956. doi: 10.1155/2013/231956.

PMID: 24159383, PMCID: PMC3789326.

Tierney WM, Beck EJ, Gardner RM, Musick B, Shields M, Shiyonga NM, et al. Viewpoint: a pragmatic

approach to constructing a minimum data set for care of patients with HIV in developing countries. J Am

Med Inform Assoc. 2006; 13(3): 253–60. doi: 10.1197/jamia.M2005. PMID: 16501175, PMCID:

PMC1513663.

Pakgaohar A, Sadegi Kia A. Analysis of accident data by decision trees. Traffic Manage Study. 2009; 3(8):

–47.

Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a Self-management Program on Patients

with Chronic Disease. Effective Clinical Practice. 2001; 4(6): 256–62. PMID: 11769298.

Donovan JL, Blake DR. Qualitative study of interpretation of reassurance among patients attending

rheumatology clinics: “just a touch of arthritis, doctor?” BMJ . 2000; 320: 541–4. doi:

1136/bmj.320.7234.541. PMID: 10688559, PMCID: PMC27296.

Arie S. Can mobile phones transform healthcare in low and middle income countries? BMJ. 2015; 350:

h1975. doi: 10.1136/bmj.h1975. PMID: 25902967.

Garofalo R, Kuhns LM, Hotton A, Johnson A, Muldoon A, Rice D. A randomized controlled trial of

personalized text message reminders to promote medication adherence among HIV-positive adolescents

and young adults. AIDS and Behavior. 2016; 20(5): 1049-59. doi: 10.1007/s10461-015-1192-x. PMID:

, PMCID: PMC4788595.

Nhavoto JA, Gronlund A, Chaquilla WP. SMSaude: Design, Development, and Implementation of a

Remote/Mobile Patient Management System to Improve Retention in Care for HIV/AIDS and Tuberculosis

Patients. JMIR Mhealth Uhealth. 2015; 3(1): e26. doi: 10.2196/mhealth.3854. PMID: 25757551, PMCID:

PMC437612.

Lai TY, Larson EL, Rockoff ML, Bakken S. User acceptance of HIV TIDES--Tailored Interventions for

Management of Depressive Symptoms in persons living with HIV/AIDS. J Am Med Inform Assoc. 2008;

(2): 217–26. doi: 10.1197/jamia.M2481. PMID: 18096915, PMCID: PMC2274800.

Tamblyn R, Huang A, Kawasumi Y, Bartlett G, Grad R, Jacques A, et al. The development and evaluation

of an integrated electronic prescribing and drug management system for primary care. J Am Med

Informatic. 2006; 13 (2): 148-59. doi: 10.1197/jamia.M1887. PMID: 16357357, PMCID: PMC1447542.

Miller CW, Himelhoch S. Acceptability of mobile phone technology for medication adherence

interventions among HIV-positive patients at an urban clinic. AIDS research and treatment. 2013. doi:

1155/2013/670525.

Belzer ME, Naar-King S, Olson J, Sarr M, Thornton S, Kahana SY, et al. The use of cell phone support for

non-adherent HIV-infected youth and young adults: an initial randomized and controlled intervention trial.

AIDS and behavior. 2014; 18(4): 686-96. doi: 10.1007/s10461-013-0661-3. PMID: 24271347, PMCID:

PMC3962719.

L'Engle KL, Green K, Succop SM, Laar A, Wambugu S. Scaled-Up Mobile Phone Intervention for HIV

Care and Treatment: Protocol for a Facility Randomized Controlled Trial. JMIR research protocols. 2015;

(1): e11.

Published

2021-12-24

Issue

Section

Articles