Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2019 Oct:85:105819.
doi: 10.1016/j.cct.2019.105819. Epub 2019 Aug 7.

Scalability of cancer SurvivorLink™: A cluster randomized trial among pediatric cancer clinics

Cam Escoffery  1 , Jordan Gilleland Marchak  2 , Regine Haardörfer  3 , Lillian Meacham  4 , Rebecca Williamson Lewis  5 , Hallie Udelson  6 , Paula Edwards  7 , Ann C Mertens  8
Affiliations

Scalability of cancer SurvivorLink™: A cluster randomized trial among pediatric cancer clinics

Cam Escoffery et al. Contemp Clin Trials. 2019 Oct.

Abstract

Background: Children diagnosed with cancer are living longer and the survivor population is growing. However, most survivors develop late effects of radiation and chemotherapy shortly to years after completion of therapy, and the receipt of follow-up visits that are recommended by the Children's Oncology Group (COG) is suboptimal nationally.

Aims: The aims of this study are to: 1) evaluate the impact of a patient-controlled electronic personal health record (ePHR) and system (SurvivorLink) on care visit attendance, risk-based surveillance, and other secondary outcomes (i.e., patient activation, quality of life (QOL)); 2) measure the use, acceptability, and perceived usefulness of, and satisfaction with SurvivorLink; and 3) assess facilitators and barriers to implementation.

Methods: This hybrid effectiveness-implementation, clustered randomized control trial (RCT) evaluates the effect of SurvivorLink among pediatric cancer survivors and their parents on receipt of follow-up cancer care. We will recruit 20 pediatric survivor clinics with half receiving the intervention and half acting as a waitlist control. Parents of survivors and survivors will complete baseline, 3 and 12 month surveys that assess SurvivorLink use, patient self-efficacy, and intentions to return for follow-up. We will use mixed methods and multi-informant assessment to assess implementation outcomes (i.e., acceptability, feasibility, appropriateness).

Discussion: New approaches are needed to facilitate the receipt of long-term follow-up care among pediatric cancer survivors. This study will assess whether SurvivorLink is effective in increasing receipt of follow-up cancer care. Moreover, it will explore the influences of context and other moderators of clinical practice change in pediatric cancer survivorship.

Keywords: Cancer survivor; Child; Health behavior; Health education; Medical records; Surveys and questionnaire.

PubMed Disclaimer

Conflict of interest statement

Competing interests

The authors declare that they have no competing interests.

Figures

Fig 1.
Fig 1.
Clustered RCT CONSORT flow diagram
Fig. 2.
Fig. 2.
Hybrid I effectiveness-implementation trial flowchart.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Howlader N, Noone A, Krapcho M, Garshell J, Neyman N, Altekruse S. SEER Cancer Statistics Review, 1975-2014. Bethesda, MD; 2016.
    1. Oeffinger KC, Hudson MM. Long-term complications following childhood and adolescent cancer: foundations for providing risk-based health care for survivors. CA Cancer J Clin. 2004;54(4):208–36. - PubMed
    1. Hudson MM, Mulrooney DA, Bowers DC, Sklar CA, Green DM, Donaldson SS, et al. High-risk populations identified in Childhood Cancer Survivor Study investigations: implications for risk-based surveillance. J Clin Oncol. 2009;27(14):2405–14. - PMC - PubMed
    1. Zeltzer LK, Recklitis C, Buchbinder D, Zebrack B, Casillas J, Tsao JC, et al. Psychological status in childhood cancer survivors: a report from the Childhood Cancer Survivor Study. J Clin Oncol. 2009;27(14):2396–404. - PMC - PubMed
    1. Ness KK, Hudson MM, Ginsberg JP, Nagarajan R, Kaste SC, Marina N, et al. Physical performance limitations in the Childhood Cancer Survivor Study cohort. J Clin Oncol. 2009;27(14):2382–9. - PMC - PubMed

Publication types