Prediction of (Non)Participation of Older People in Digital Health Research: Exergame Intervention Study

Arianna Poli, Susanne Kelfve, Leonie Klompstra, Anna Strömberg, Tiny Jaarsma, Andreas Motel-Klingebiel, Arianna Poli, Susanne Kelfve, Leonie Klompstra, Anna Strömberg, Tiny Jaarsma, Andreas Motel-Klingebiel

Abstract

Background: The use of digital technologies is increasing in health care. However, studies evaluating digital health technologies can be characterized by selective nonparticipation of older people, although older people represent one of the main user groups of health care.

Objective: We examined whether and how participation in an exergame intervention study was associated with age, gender, and heart failure (HF) symptom severity.

Methods: A subset of data from the HF-Wii study was used. The data came from patients with HF in institutional settings in Germany, Italy, the Netherlands, and Sweden. Selective nonparticipation was examined as resulting from two processes: (non)recruitment and self-selection. Baseline information on age, gender, and New York Heart Association Functional Classification of 1632 patients with HF were the predictor variables. These patients were screened for HF-Wii study participation. Reasons for nonparticipation were evaluated.

Results: Of the 1632 screened patients, 71% did not participate. The nonrecruitment rate was 21%, and based on the eligible sample, the refusal rate was 61%. Higher age was associated with lower probability of participation; it increased both the probabilities of not being recruited and declining to participate. More severe symptoms increased the likelihood of nonrecruitment. Gender had no effect. The most common reasons for nonrecruitment and self-selection were related to physical limitations and lack of time, respectively.

Conclusions: Results indicate that selective nonparticipation takes place in digital health research and that it is associated with age and symptom severity. Gender effects cannot be proven. Such systematic selection can lead to biased research results that inappropriately inform research, policy, and practice.

Trial registration: ClinicalTrial.gov NCT01785121, https://ichgcp.net/clinical-trials-registry/NCT01785121.

Keywords: exclusion; nonparticipation; recruitment; self-selection; technology.

Conflict of interest statement

Conflicts of Interest: None declared.

©Arianna Poli, Susanne Kelfve, Leonie Klompstra, Anna Strömberg, Tiny Jaarsma, Andreas Motel-Klingebiel. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 05.06.2020.

Figures

Figure 1
Figure 1
Probability of being in one of the 3 recruitment groups (ie, nonrecruited, decliner, participant) based on heart failure symptom severity.
Figure 2
Figure 2
Probability of being in one of the 3 recruitment groups (ie, nonrecruited, decliner, participant) based on age.

References

    1. Czaja SJ. The Potential Role of Technology in Supporting Older Adults. Public Policy & Aging Report. 2017;27(2):44–48. doi: 10.1093/ppar/prx006.
    1. Schulz R, Wahl H, Matthews JT, De Vito Dabbs A, Beach SR, Czaja SJ. Advancing the Aging and Technology Agenda in Gerontology. Gerontologist. 2015 Oct;55(5):724–734. doi: 10.1093/geront/gnu071.
    1. Lindeman D. Improving the Independence of Older Adults through Technology: Directions for Public Policy. Public Policy & Aging Report. 2017;27(2):49–52. doi: 10.1093/ppar/prx011.
    1. European Commission. 2018. [2020-05-22]. Communication on enabling the digital transformation of health and care in the Digital Single Market; empowering citizens and building a healthier society .
    1. World Health Organisation . Global Observatory for eHealth. Geneva: World Health Organization: World Health Organization; 2016. [2020-05-22]. Global diffusion of eHealth: Making universal health coverage achievable. Report of the third global survey on eHealth .
    1. Terraneo M. Inequities in health care utilization by people aged 50+: evidence from 12 European countries. Soc Sci Med. 2015 Feb;126:154–63. doi: 10.1016/j.socscimed.2014.12.028.
    1. People in the EU - statistics on an ageing society. Eurostat; 2017. [2020-05-22]. .
    1. Lee C, Czaja S, Moxley J, Sharit J, Boot W, Charness N, Rogers WA. Attitudes Toward Computers Across Adulthood From 1994 to 2013. Gerontologist. 2019 Jan 09;59(1):22–33. doi: 10.1093/geront/gny081.
    1. König R, Seifert A, Doh M. Internet use among older Europeans: an analysis based on SHARE data. Univ Access Inf Soc. 2018 Jan 19;17(3):621–633. doi: 10.1007/s10209-018-0609-5.
    1. Helsper EJ, Reisdorf BC. The emergence of a “digital underclass” in Great Britain and Sweden: Changing reasons for digital exclusion. New Media & Society. 2016 Mar 03;19(8):1253–1270. doi: 10.1177/1461444816634676.
    1. Olsson T, Samuelsson U, Viscovi D. At risk of exclusion? Degrees of ICT access and literacy among senior citizens. Information, Communication & Society. 2017 Jul 20;22(1):55–72. doi: 10.1080/1369118x.2017.1355007.
    1. Fang M, Canham S, Battersby L, Sixsmith J, Wada M, Sixsmith A. Exploring Privilege in the Digital Divide: Implications for Theory, Policy, and Practice. Gerontologist. 2019 Jan 09;59(1):e1–e15. doi: 10.1093/geront/gny037.
    1. Kim J, Lee HY, Christensen MC, Merighi JR. Technology Access and Use, and Their Associations With Social Engagement Among Older Adults: Do Women and Men Differ? J Gerontol B Psychol Sci Soc Sci. 2017 Sep 01;72(5):836–845. doi: 10.1093/geronb/gbw123.
    1. Gell NM, Rosenberg DE, Demiris G, LaCroix AZ, Patel KV. Patterns of technology use among older adults with and without disabilities. Gerontologist. 2015 Jun;55(3):412–21. doi: 10.1093/geront/gnt166.
    1. Vorrink SNW, Antonietti AMGEF, Kort HSM, Troosters T, Zanen P, Lammers JJ. Technology use by older adults in the Netherlands and its associations with demographics and health outcomes. Assist Technol. 2017;29(4):188–196. doi: 10.1080/10400435.2016.1219885.
    1. Siren A, Knudsen SG. Older Adults and Emerging Digital Service Delivery: A Mixed Methods Study on Information and Communications Technology Use, Skills, and Attitudes. J Aging Soc Policy. 2017;29(1):35–50. doi: 10.1080/08959420.2016.1187036.
    1. Wyatt S. Non-users also matter: The construction of non-users of the Internet. In: Oudshoorn N, Pinch T, editors. How Users Matter: The Co-construction of Users and Technology. Cambridge: MIT Press; 2003. pp. 67–79.
    1. Merkel S, Kucharski A. Participatory Design in Gerontechnology: A Systematic Literature Review. Gerontologist. 2019 Jan 09;59(1):e16–e25. doi: 10.1093/geront/gny034.
    1. Grates M, Heming A, Vukoman M, Schabsky P, Sorgalla J. New Perspectives on User Participation in Technology Design Processes: An Interdisciplinary Approach. Gerontologist. 2019 Jan 09;59(1):45–57. doi: 10.1093/geront/gny112.
    1. Epstein S. Inclusion, Diversity,Biomedical Knowledge Making: The Multiple Politics of Representation. In: Oudshoorn N, Pinch T, editors. How Users Matter: The Co-Construction of Users and Technology. Cambridge: MIT Press; 2003. pp. 173–90.
    1. Allemann H, Poli A. Designing and evaluating information and communication technology-based interventions? Be aware of the needs of older people. Eur J Cardiovasc Nurs. 2020 Jan 23;:1–3. doi: 10.1177/1474515119897398.
    1. Glasgow RE. eHealth evaluation and dissemination research. Am J Prev Med. 2007 May;32(5 Suppl):S119–26. doi: 10.1016/j.amepre.2007.01.023.
    1. Robinson L, Cotten SR, Ono H, Quan-Haase A, Mesch G, Chen W, Schulz J, Hale TM, Stern MJ. Digital inequalities and why they matter. Information, Communication & Society. 2015 Mar 16;18(5):569–582. doi: 10.1080/1369118X.2015.1012532.
    1. DiMaggio P, Garip F. Network Effects and Social Inequality. Annu. Rev. Sociol. 2012 Aug 11;38(1):93–118. doi: 10.1146/annurev.soc.012809.102545.
    1. Mair FS, Goldstein P, Shiels C, Roberts C, Angus R, O'Connor J, Haycox A, Capewell S. Recruitment difficulties in a home telecare trial. J Telemed Telecare. 2006;12 Suppl 1:26–8. doi: 10.1258/135763306777978371.
    1. Green BB, Anderson ML, Ralston JD, Catz S, Fishman PA, Cook AJ. Patient ability and willingness to participate in a web-based intervention to improve hypertension control. J Med Internet Res. 2011 Jan 20;13(1):e1. doi: 10.2196/jmir.1625.
    1. Dodge HH, Katsumata Y, Zhu J, Mattek N, Bowman M, Gregor M, Wild K, Kaye JA. Characteristics associated with willingness to participate in a randomized controlled behavioral clinical trial using home-based personal computers and a webcam. Trials. 2014 Dec 23;15:508. doi: 10.1186/1745-6215-15-508.
    1. Foster A, Horspool KA, Edwards L, Thomas CL, Salisbury C, Montgomery AA, O'Cathain A. Who does not participate in telehealth trials and why? A cross-sectional survey. Trials. 2015 Jun 05;16(1):258. doi: 10.1186/s13063-015-0773-3.
    1. Broendum E, Ulrik CS, Gregersen T, Hansen EF, Green A, Ringbaek T. Barriers for recruitment of patients with chronic obstructive pulmonary disease to a controlled telemedicine trial. Health Informatics J. 2018 Jun;24(2):216–224. doi: 10.1177/1460458216667166.
    1. Subramanian U, Hopp F, Lowery J, Woodbridge P, Smith D. Research in home-care telemedicine: challenges in patient recruitment. Telemed J E Health. 2004;10(2):155–61. doi: 10.1089/tmj.2004.10.155.
    1. Jaarsma T, Klompstra L, Ben Gal T, Boyne J, Vellone E, Bäck M, Dickstein K, Fridlund B, Hoes A, Piepoli MF, Chialà O, Mårtensson J, Strömberg A. Increasing exercise capacity and quality of life of patients with heart failure through Wii gaming: the rationale, design and methodology of the HF-Wii study; a multicentre randomized controlled trial. Eur J Heart Fail. 2015;17(7):743–8. doi: 10.1002/ejhf.305. doi: 10.1002/ejhf.305.
    1. Jaarsma T, Klompstra L, Ben Gal T, Ben Avraham B, Boyne J, Bäck M, Chialà O, Dickstein K, Evangelista L, Hagenow A, Hoes AW, Hägglund E, Piepoli MF, Vellone E, Zuithoff NP, Mårtensson J, Strömberg A. Effects of exergaming on exercise capacity in patients with heart failure: results of an international multicentre randomized controlled trial. Eur J Heart Fail. 2020:1–11. doi: 10.1002/ejhf.1754.
    1. Klompstra L, Jaarsma T, Strömberg A. Exergaming to increase the exercise capacity and daily physical activity in heart failure patients: a pilot study. BMC Geriatr. 2014 Nov 18;14(1):119. doi: 10.1186/1471-2318-14-119.
    1. Klompstra L, Jaarsma T, Strömberg A. An in-depth, longitudinal examination of the daily physical activity of a patient with heart failure using a Nintendo Wii at home: a case report. J Rehabil Med. 2013 Jun;45(6):599–602. doi: 10.2340/16501977-1151.
    1. Ponikowski P, Voors A, Anker S, Bueno H, Cleland J, Coats A, Falk V, González-Juanatey JR, Harjola VP, Jankowska EA, Jessup M, Linde C, Nihoyannopoulos P, Parissis JT, Pieske B, Riley JiP, Rosano GMC, Ruilope LM, Ruschitzka F, Rutten FH, van der Meer P, ESC Scientific Document Group 2016 ESC Guidelines for the diagnosis and treatment of acute and chronic heart failure: The Task Force for the diagnosis and treatment of acute and chronic heart failure of the European Society of Cardiology (ESC)Developed with the special contribution of the Heart Failure Association (HFA) of the ESC. Eur Heart J. 2016 Jul 14;37(27):2129–2200. doi: 10.1093/eurheartj/ehw128.
    1. Poli A, Kelfve S, Motel-Klingebiel A. A research tool for measuring non-participation of older people in research on digital health. BMC Public Health. 2019 Nov 08;19(1):1487. doi: 10.1186/s12889-019-7830-x.
    1. Dolgin M, New York Heart Association . Nomenclature and criteria for diagnosis of diseases of the heart and great vessels. In: Dolgin M, editor. The Criteria Committee of the New York Heart Association. Boston: Little, Brown; 1994. pp. 1–334.
    1. Williams R. Using the Margins Command to Estimate and Interpret Adjusted Predictions and Marginal Effects. The Stata Journal. 2018 Nov 19;12(2):308–331. doi: 10.1177/1536867x1201200209.
    1. Mood C. Logistic Regression: Why We Cannot Do What We Think We Can Do, and What We Can Do About It. European Sociological Review. 2009 Mar 09;26(1):67–82. doi: 10.1093/esr/jcp006.
    1. Provencher V, Mortenson WB, Tanguay-Garneau L, Bélanger K, Dagenais M. Challenges and strategies pertaining to recruitment and retention of frail elderly in research studies: a systematic review. Arch Gerontol Geriatr. 2014;59(1):18–24. doi: 10.1016/j.archger.2014.03.006.
    1. Taylor JS, DeMers SM, Vig EK, Borson S. The disappearing subject: exclusion of people with cognitive impairment and dementia from geriatrics research. J Am Geriatr Soc. 2012;60(3):413–9. doi: 10.1111/j.1532-5415.2011.03847.x.
    1. van Heuvelen MJG, Hochstenbach JBM, Brouwer WH, de Greef MHG, Zijlstra GAR, van Jaarsveld E, Kempen GIJM, van Sonderen E, Ormel J, Mulder T. Differences between participants and non-participants in an RCT on physical activity and psychological interventions for older persons. Aging Clin Exp Res. 2005 Jun;17(3):236–45. doi: 10.1007/BF03324603.
    1. Elskamp AB, Hartholt KA, Patka P, van Beeck EF, van der Cammen TJ. Why older people refuse to participate in falls prevention trials: a qualitative study. Exp Gerontol. 2012;47(4):342–5. doi: 10.1016/j.exger.2012.01.006.
    1. Harrison JM, Jung M, Lennie TA, Moser DK, Smith DG, Dunbar SB, Ronis DL, Koelling TM, Giordani B, Riley PL, Pressler SJ. Refusal to participate in heart failure studies: do age and gender matter? J Clin Nurs. 2016 Apr 23;25(7-8):983–91. doi: 10.1111/jocn.13135.
    1. Chatfield MD, Brayne CE, Matthews FE. A systematic literature review of attrition between waves in longitudinal studies in the elderly shows a consistent pattern of dropout between differing studies. J Clin Epidemiol. 2005 Jan;58(1):13–9. doi: 10.1016/j.jclinepi.2004.05.006.
    1. Thake M, Lowry A. A systematic review of trends in the selective exclusion of older participant from randomised clinical trials. Arch Gerontol Geriatr. 2017;72:99–102. doi: 10.1016/j.archger.2017.05.017.
    1. Cherubini A, Oristrell J, Pla X, Ruggiero C, Ferretti R, Diestre G, Clarfield AM, Crome P, Hertogh C, Lesauskaite V, Prada G, Szczerbinska K, Topinkova E, Sinclair-Cohen J, Edbrooke D, Mills GH. The persistent exclusion of older patients from ongoing clinical trials regarding heart failure. Arch Intern Med. 2011;171(6):550–6. doi: 10.1001/archinternmed.2011.31.
    1. Guha K, McDonagh T. Heart failure epidemiology: European perspective. Curr Cardiol Rev. 2013 May;9(2):123–7. doi: 10.2174/1573403x11309020005.
    1. Lazzarini V, Mentz RJ, Fiuzat M, Metra M, O'Connor CM. Heart failure in elderly patients: distinctive features and unresolved issues. Eur J Heart Fail. 2013 Jul;15(7):717–23. doi: 10.1093/eurjhf/hft028. doi: 10.1093/eurjhf/hft028.
    1. Gong IY, Tan NS, Ali SH, Lebovic G, Mamdani M, Goodman SG, Ko DT, Laupacis A, Yan AT. Temporal Trends of Women Enrollment in Major Cardiovascular Randomized Clinical Trials. Can J Cardiol. 2019 May;35(5):653–660. doi: 10.1016/j.cjca.2019.01.010.
    1. Pressler SJ. Women With Heart Failure Are Disproportionately Studied as Compared With Prevalence. The Journal of Cardiovascular Nursing. 2016;31(1):84–88. doi: 10.1097/jcn.0000000000000212.

Source: PubMed

3
S'abonner