Appl Clin Inform 2017; 08(01): 250-264
DOI: 10.4338/ACI-2016-11-RA-0189
Research Article
Schattauer GmbH

Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors

Rebecca S Williamson
1  Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA
,
Brooke O Cherven
1  Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA
,
Jordan Gilleland Marchak
1  Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA
2  Department of Pediatrics, Emory University, Atlanta, GA, USA
,
Paula Edwards
3  HIMformatics, LLC, Atlanta, GA, USA
,
Michael Palgon
3  HIMformatics, LLC, Atlanta, GA, USA
,
Cam Escoffery
4  Rollins School of Public Health, Emory University, Atlanta, GA, USA
,
Lillian R Meacham
1  Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA
2  Department of Pediatrics, Emory University, Atlanta, GA, USA
,
Ann C Mertens
1  Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, Atlanta, GA, USA
2  Department of Pediatrics, Emory University, Atlanta, GA, USA
› Author Affiliations
Funding This work was supported by grants from AHRQ (R18 HS017831) and CURE Childhood Cancer.
Further Information

Correspondence to:

Rebecca Williamson, MPH
2015 Upper Gate Drive, 4th Floor
Atlanta, GA 30322
Phone: 404.785.9929   
Fax: 404.785.9248   

Publication History

Received: 04 November 2016

Accepted: 08 January 2017

Publication Date:
20 December 2017 (online)

 

Summary

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.


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Conflict of Interest Statement

The authors declare they have no conflict of interest relevant to this article to disclose.


Correspondence to:

Rebecca Williamson, MPH
2015 Upper Gate Drive, 4th Floor
Atlanta, GA 30322
Phone: 404.785.9929   
Fax: 404.785.9248