Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer SurvivorsFunding This work was supported by grants from AHRQ (R18 HS017831) and CURE Childhood Cancer.
04 November 2016
Accepted: 08 January 2017
20 December 2017 (online)
Background and Objectivs: Survivors of pediatric and adolescent cancer are at an increased risk of chronic and debilitating health conditions and require life-long specialized care. Stand-alone electronic personal health records (ePHRs) may aid their self-management. This analysis characterizes young adult survivors and parents who meaningfully use an ePHR, Cancer SurvivorLinkTM, designed for survivors of pediatric and adolescent cancer.
Methods: This was a retrospective observational study of patients seen at a pediatric survivor clinic for annual survivor care. Young adult survivors and/or parent proxies for survivors <18 years old who completed ePHR registration prior to their appointment or within 90 days were classified as registrants. Registrants who uploaded or downloaded a document and/or shared their record were classified as meaningful users.
Results: Overall, 23.7% (148/624) of survivors/parents registered and 38% of registrants used SurvivorLink meaningfully. Young adult registrants who transferred to adult care during the study period were more likely to be meaningful users (aOR: 2.6 (95% CI: 1.1, 6.1)) and used the ePHR twice as frequently as those who continued to receive care in our institution’s pediatric survivor clinic. Among survivors who continued to receive care at our institution, being a registrant was associated with having an annual follow-up visit (aOR: 2.6 (95% CI: 1.2, 5.8)).
Conclusions: While ePHRs may not be utilized by all survivors, SurvivorLink is a resource for a subset and may serve as an important bridge for patients who transfer their care. Using SurvivorLink was also associated with receiving recommended annual survivor care.
- 1 Howlader N, Noone A, Krapcho M, Garshell J, Neyman N, Altekruse S, Kosary CL, Yu M, Ruhl J, Tatalovich Z, Cho H, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA. (eds). SEER Cancer Statistics Review, 1975-2010.. Besthesda, MD: [cited 2013 April]; Available from: http://seer.cancer.gov/csr/1975_2010/ based on November 2012 SEER data submission, posted to the SEER web site, April 2013.
- 2 Phillips SM, Padgett LS, Leisenring WM, Stratton KK, Bishop K, Krull KR, Alfano CM, Gibson TM, de Moor JS, Hartigan DB, Armstrong GT, Robison LL, Rowland JH, Oeffinger KC, Mariotto AB. Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiol Biomarkers Prev 2015; 24 (Suppl. 04) 653-663.
- 3 Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL. Childhood Cancer Survivor Study.. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 2006; 355 (Suppl. 15) 1572-1582.
- 4 Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, Green DM, Armstrong GT, Nottage KA, Jones KE, Sklar CA, Srivastava DK, Robison LL. Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 2013; 309 (Suppl. 22) 2371-2381.
- 5 Children’s Oncology Group.. Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers Version 4.0.. Version 4.0 ed2013.
- 6 Archer N, Fevrier-Thomas U, Lokker C, McKibbon KA, Straus SE. Personal health records: a scoping review. J Am Med Inform Assoc 2011; 18 (Suppl. 04) 515-522.
- 7 Kaelber DC, Jha AK, Johnston D, Middleton B, Bates DW. A research agenda for personal health records (PHRs). J Am Med Inform Assoc 2008; 15 (Suppl. 06) 729-736.
- 8 Kahn JS, Aulakh V, Bosworth A. What it takes: characteristics of the ideal personal health record. Health Aff (Millwood). 2009; 28 (Suppl. 02) 369-376.
- 9 Council on Clinical. Information T. Policy Statement--Using personal health records to improve the quality of health care for children. Pediatrics 2009; 124 (Suppl. 01) 403-409.
- 10 Sharp LK, Carvalho P, Southward M, Schmidt ML, Jabine LN, Stolley MR, Gerber BS. Electronic Personal Health Records for Childhood Cancer Survivors: An Exploratory Study. J Adolesc Young Adult Oncol 2014; 3 (Suppl. 03) 117-122.
- 11 Tom JO, Chen C, Zhou YY. Personal health record use and association with immunizations and well-child care visits recommendations. J Pediatr 2014; 164 (Suppl. 01) 112-117.
- 12 Zhou YY, Leith WM, Li H, Tom JO. Personal health record use for children and health care utilization: propensity score-matched cohort analysis. J Am Med Inform Assoc 2015; 22 (Suppl. 04) 748-754.
- 13 Byczkowski TL, Munafo JK, Britto MT. Variation in use of Internet-based patient portals by parents of children with chronic disease. Arch Pediatr Adolesc Med 2011; 165 (Suppl. 05) 405-411.
- 14 Williamson R, Meacham L, Cherven B, Hassen-Schilling L, Edwards P, Palgon M, Espinoza S, Mertens A. Predictors of successful use of a web-based healthcare document storage and sharing system for pediatric cancer survivors: Cancer SurvivorLink. J Cancer Surviv 2014; 8 (Suppl. 03) 355-363.
- 15 Centers for Medicare & Medicaid Services.. Electronic Health Records (EHR) Incentive Programs. 2016 [cited 2016 February 12]; Available from: https://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/index.html?redirect=/EHRIncentivePrograms/50_Registration.asp#TopOfPage.
- 16 Centers for Medicare & Medicaid Services. Merit-based Incentive Payment System (MIPS) and Alternative Payment Model (APM). Incentive under the Physician Fee Schedule, and Criteria for Physician-Focused Payment Models Executive Summary. [cited 13 December 2016]; Available from: https://qpp.cms.gov/docs/QPP_Executive_Summary_of_Final_Rule.pdf
- 17 Elliot DL, Lindemulder SJ, Goldberg L, Stadler DD, Smith J. Health promotion for adolescent childhood leukemia survivors: building on prevention science and ehealth. Pediatr Blood Cancer 2013; 60 (Suppl. 06) 905-910.
- 18 Henderson TO, Friedman DL, Meadows AT. Childhood cancer survivors: transition to adult-focused risk-based care. Pediatrics 2010; 126 (Suppl. 01) 129-136.
- 19 Nathan PC, Hayes-Lattin B, Sisler JJ, Hudson MM. Critical issues in transition and survivorship for adolescents and young adults with cancers. Cancer 2011; 117 (Suppl. 10) 2335-2341.
- 20 Dontje K, Corser W, Holzman G. Understanding Patient Perceptions of the Electronic Personal Health Record. J Nurse Pract 2014; 10 (Suppl. 10) 824-828.
- 21 Centers for Medicare & Medicaid Services. Stage 2 Overview Tipsheet.. 2012 [cited 2016 February 5]; Available from: https://www.cms.gov/Regulations-and-Guidance/Legislation/EHRIncentivePrograms/Downloads/Stage2Overview_Tipsheet.pdf.
- 22 Yamin CK, Emani S, Williams DH, Lipsitz SR, Karson AS, Wald JS, Bates DW. The digital divide in adoption and use of a personal health record. Arch Intern Med 2011; 171 (Suppl. 06) 568-574.
- 23 Price M, Bellwood P, Kitson N, Davies I, Weber J, Lau F. Conditions potentially sensitive to a personal health record (PHR) intervention, a systematic review. BMC Med Inform Decis Mak 2015; 15: 32.
- 24 Health Information Technology Resource Center (HITRC).. The Value of Personal Health Records and Web Portals to Engage Consumers and Improve Quality.. Robert Wood Johnson Foundation 2012 [cited 2016 February 11]; Available from: http://www.rwjf.org/content/dam/farm/reports/issue_briefs/2012/rwjf400251.
- 25 Otte-Trojel T, de Bont A, van de Klundert J, Rundall TG. Characteristics of patient portals developed in the context of health information exchanges: early policy effects of incentives in the meaningful use program in the United States. J Med Internet Res 2014; 16 (Suppl. 11) e258.
- 26 Ancker JS, Silver M, Kaushal R. Rapid growth in use of personal health records in New York, 2012-2013. J Gen Intern Med 2014; 29 (Suppl. 06) 850-854.
- 27 Cooley WC. Adolescent health care transition in transition. JAMA Pediatr 2013; 167 (Suppl. 10) 897-899.
- 28 Prior M, McManus M, White P, Davidson L. Measuring the “triple aim” in transition care: a systematic review. Pediatrics 2014; 134 (Suppl. 06) e1648-e1661.
- 29 Griffin A, Skinner A, Thornhill J, Weinberger M. Patient Portals: Who uses them?. What features do they use? And do they reduce hospital readmissions? Appl Clin Inform 2016; 7 (Suppl. 02) 489-501.
- 30 Clark SJ, Costello LE, Gebremariam A, Dombkowski KJ. A national survey of parent perspectives on use of patient portals for their children’s health care. Appl Clin Inform 2015; 6 (Suppl. 01) 110-119.