Dataset Information

Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study.

ABSTRACT:

Background

As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors.

Objective

The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors.

Methods

Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor's Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method.

Results

CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information.

Conclusions

For CRC, survivors may find the greater value in a PHR's medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients' needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management.

SUBMITTER: Tarver WL

PROVIDER: S-EPMC6719487 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study.

Tarver Will L WL Robb Bruce W BW Haggstrom David A DA

JMIR cancer 20190820 2

<h4>Background</h4>As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors.<h4>Obj ...[more]

PMID: 31432780

Similar Datasets

Project description:BackgroundThere are currently an estimated 1.5 million individuals living in the United States with colorectal cancer (CRC), and although the 5-year survival rate has increased, survivors are at risk for recurrence, particularly within the first 2-3 years after treatment. National guidelines recommend continued surveillance after resection to identify recurrence early on. Adherence among survivors ranges from 23% to 94%. Novel interventions are needed to increase CRC survivors' knowledge and confidence in managing their cancer and thus to increase adherence to follow-up surveillance.ObjectiveThe objective of this study is to develop and test the feasibility and efficacy of a stand-alone, web-based personal health record (PHR) to increase surveillance adherence among CRC survivors, with patient beliefs about surveillance as secondary outcomes.MethodsA pre- and postintervention feasibility trial was conducted testing the efficacy of the colorectal cancer survivor (CRCS)-PHR, which had been previously developed using an iterative, user-centered design approach.ResultsThe average age of the sample was 58 (SD 9.9) years, with 57% (16/28) male and the majority married (20/28, 71%) and employed full-time (15/28, 54%). We observed a significant increase in adherence to colonoscopy (before: 11/21, 52% vs after: 18/21, 86%; P=.005) and CEA (14/21, 67% vs 20/21, 95%; P=.01), as well as a slight increase in CT scans (14/21, 67% vs 18/21, 86%; P=.10). The only significant impact on secondary outcome (patient beliefs) was benefits of CEA test (P=.04), as most of the beliefs were high at baseline.ConclusionsThis feasibility study lays the groundwork for continued development of the CRCS-PHR to increase CRC surveillance. Patient-centered technologies, such as the CRCS-PHR, represent an important potential approach to improving the receipt of guideline-concordant care and follow-up surveillance, and not just for CRC survivors. Researchers should continue to develop patient-centered health technologies with clinician implementation in mind to increase patient self-efficacy and surveillance adherence.

Project description:PURPOSE:Breast cancer survivorship care plans (SCP) have limited content addressing women's health issues. This trial tested if young breast cancer survivors who receive a web-based, women's health SCP were more likely to improve on at least one of the four targeted issues (hot flashes, fertility-related concerns, contraception, and vaginal symptoms) compared to attention controls. METHODS:A randomized controlled trial recruited female survivors ages 18-45 at diagnosis, 18-50 at enrollment, completed primary cancer treatment, and had a significant women's health issue: moderate or higher fertility-related concerns;???4 hot flashes/day with ??1 of moderate severity; ??1 moderate vaginal atrophy symptoms; or not contracepting/using less effective methods. Survivors underwent stratified, block randomization with equal allocation to intervention and control groups. The intervention group accessed the online SCP; controls accessed curated resource lists. In intention-to-treat analysis, the primary outcome of improvement in at least one issue by 24 weeks was compared by group. RESULTS:182 participants (86 intervention, 96 control), mean age 40.0?±?5.9 and 4.4?±?3.2 years since diagnosis, were randomized. 61 intervention group participants (70.9%) improved, compared to 55 controls (57.3%) (OR 1.82, 95% CI 0.99-3.4, p?=?0.057). The following issue-specific improvements were observed in the intervention versus control arms: fertility-related concerns (27.9% vs. 14.6%, OR 2.3, 95% CI 1.1-4.8); hot flashes (58.5% vs. 55.8%, OR 1.1, 95% CI 0.57-2.2); vaginal symptoms (42.5% vs. 40.7%, OR 1.1, 95% CI 0.6-2.0); contraception (50% vs. 42.6%, OR 1.4, 95% CI 0.74-2.5). CONCLUSIONS:In young breast cancer survivors, a novel, web-based SCP did not result in more change in the primary outcome of improvement in at least one of the four targeted women's health issues, than the attention control condition. The intervention was associated with improved infertility concerns, supporting efficacy of disseminating accessible, evidence-based women's health information to this population.

Dataset Information

Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study.

Background

Objective

Methods

Results

Conclusions

Publications

Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study.

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