Paper-Based Survivorship Care Plans May be Less Helpful for Cancer Patients Who Search for Disease-Related Information on the Internet: Results of the Registrationsystem Oncological Gynecology (ROGY) Care Randomized Trial

Kim Ah Nicolaije, Nicole Pm Ezendam, Johanna Ma Pijnenborg, Dorry Boll, Maria Caroline Vos, Roy Fpm Kruitwagen, Lonneke V van de Poll-Franse, Kim Ah Nicolaije, Nicole Pm Ezendam, Johanna Ma Pijnenborg, Dorry Boll, Maria Caroline Vos, Roy Fpm Kruitwagen, Lonneke V van de Poll-Franse

Abstract

Background: The Institute of Medicine recommends Survivorship Care Plans (SCPs) for all cancer survivors. However, it is unclear whether certain patient groups may or may not benefit from SCPs.

Objective: The aim was to assess whether the effects of an automatically generated paper SCP on patients' satisfaction with information provision and care, illness perceptions, and health care utilization were moderated by disease-related Internet use.

Methods: Twelve hospitals were randomized to either SCP care or usual care in the pragmatic cluster randomized Registrationsystem Oncological GYnecology (ROGY) Care trial. Newly diagnosed endometrial cancer patients completed questionnaires after diagnosis (N=221; response: 74.7%, 221/296), 6 months (n=158), and 12 months (n=147), including patients' satisfaction with information provision and care, illness perceptions, health care utilization (how many times patients visited a medical specialist or primary care physician about their cancer in the past 6 months), and disease-related Internet use (whether patients used the Internet to look for information about cancer).

Results: In total, 80 of 221 (36.2%) patients used the Internet to obtain disease-related information. Disease-related Internet use moderated the SCP care effect on the amount of information received about the disease (P=.03) and medical tests (P=.01), helpfulness of the information (P=.01), and how well patients understood their illness (P=.04). All stratified analyses were not statistically significant. However, it appeared that patients who did not seek disease-related information on the Internet in the SCP care arm reported receiving more information about their disease (mean 63.9, SD 20.1 vs mean 58.3, SD 23.7) and medical tests (mean 70.6, SD 23.5 vs mean 64.7, SD 24.9), finding the information more helpful (76.7, SD 22.9 vs mean 67.8, SD 27.2; scale 0-100), and understanding their illness better (mean 6.6, SD 3.0 vs mean 6.1, SD 3.2; scale 1-10) than patients in the usual care arm did. In addition, although all stratified analyses were not significant, patients who did seek disease-related information on the Internet in the SCP care arm appeared to receive less information about their disease (mean 65.7, SD 23.4 vs mean 67.1, SD 20.7) and medical tests (mean 72.4, SD 23.5 vs mean 75.3, SD 21.6), did not find the information more helpful (mean 78.6, SD 21.2 vs mean 76.0, SD 22.0), and reported less understanding of their illness (mean 6.3, SD 2.8 vs mean 7.1, SD 2.7) than patients in the usual care arm did.

Conclusions: Paper SCPs appear to improve the amount of information received about the disease and medical tests, the helpfulness of the information, and understanding of the illness for patients who do not search for disease-related information on the Internet. In contrast, paper SCPs do not seem beneficial for patients who do seek disease-related information on the Internet.

Trial registration: ClinicalTrials.gov NCT01185626; https://ichgcp.net/clinical-trials-registry/NCT01185626 (Archived by WebCite at http://www.webcitation.org/6fpaMXsDn).

Keywords: Internet use; Survivorship Care Plan; endometrial neoplasms; information provision; patient-reported outcomes; pragmatic cluster randomized trial.

Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
CONSORT flow diagram of the progress of the hospitals and endometrial cancer patients through the phases of the ROGY Care trial. ITT: intention-to-treat analyses (comparing all respondents in the SCP care arm to all respondents in the usual care arm); PP: per protocol analyses (comparing the respondents in the SCP care arm who indicated that they received an SCP in the first questionnaire to all respondents in the usual care arm).
Figure 2
Figure 2
Patients’ reported amount of information received about their disease according to disease-related Internet use for the SCP care and the usual care arms. Crude means are reported. Error bars represent +1 SD. EORTC-QLQ-INFO25 scale ranges from 0-100 (higher scores reflect better perceived information received).
Figure 3
Figure 3
Patients’ reported amount of information received about their medical tests according to disease-related Internet use for the SCP care and the usual care arms. Crude means are reported. Error bars represent +1 SD. EORTC-QLQ-INFO25 scale ranges from 0-100 (higher scores reflect better perceived information received).
Figure 4
Figure 4
Patient-reported helpfulness of the information received according to disease-related Internet use for the SCP care arm and the usual care arm. Crude means are reported. Error bars represent +1 SD. EORTC-QLQ-INFO25 scale ranges from 0-100 (higher scores reflect better-perceived information received).
Figure 5
Figure 5
Patients’ reported understanding of their illness according to disease-related Internet use for the SCP care and the usual care arms. Crude means are reported. Error bars represent +1 SD. B-IPQ scale ranges from 1-10 (higher scores indicate more endorsement of that item).

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