Dataset Information

Impact of a Personal Health Record Intervention Upon Surveillance Among Colorectal Cancer Survivors: Feasibility Study.

ABSTRACT:

Background

There 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.

Objective

The 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.

Methods

A 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.

Results

The 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.

Conclusions

This 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.

SUBMITTER: Vachon E

PROVIDER: S-EPMC9412760 | biostudies-literature | 2022 Aug

REPOSITORIES: biostudies-literature

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Publications

Impact of a Personal Health Record Intervention Upon Surveillance Among Colorectal Cancer Survivors: Feasibility Study.

Vachon Eric E Robb Bruce W BW Haggstrom David A DA

JMIR cancer 20220811 3

<h4>Background</h4>There 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' knowledg ...[more]

PMID: 35969424

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Project description:BackgroundAs 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.ObjectiveThe 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.MethodsTwenty-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.ResultsCRC 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.ConclusionsFor 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.

Project description:BackgroundPersonal health record (PHR)-based health care management systems can improve patient engagement and data-driven medical diagnosis in a clinical setting.ObjectiveThe purpose of this study was (1) to demonstrate the development of an electronic health record (EHR)-tethered PHR app named MyHealthKeeper, which can retrieve data from a wearable device and deliver these data to a hospital EHR system, and (2) to study the effectiveness of a PHR data-driven clinical intervention with clinical trial results.MethodsTo improve the conventional EHR-tethered PHR, we ascertained clinicians' unmet needs regarding PHR functionality and the data frequently used in the field through a cocreation workshop. We incorporated the requirements into the system design and architecture of the MyHealthKeeper PHR module. We constructed the app and validated the effectiveness of the PHR module by conducting a 4-week clinical trial. We used a commercially available activity tracker (Misfit) to collect individual physical activity data, and developed the MyHealthKeeper mobile phone app to record participants' patterns of daily food intake and activity logs. We randomly assigned 80 participants to either the PHR-based intervention group (n=51) or the control group (n=29). All of the study participants completed a paper-based survey, a laboratory test, a physical examination, and an opinion interview. During the 4-week study period, we collected health-related mobile data, and study participants visited the outpatient clinic twice and received PHR-based clinical diagnosis and recommendations.ResultsA total of 68 participants (44 in the intervention group and 24 in the control group) completed the study. The PHR intervention group showed significantly higher weight loss than the control group (mean 1.4 kg, 95% CI 0.9-1.9; P<.001) at the final week (week 4). In addition, triglyceride levels were significantly lower by the end of the study period (mean 2.59 mmol/L, 95% CI 17.6-75.8; P=.002).ConclusionsWe developed an innovative EHR-tethered PHR system that allowed clinicians and patients to share lifelog data. This study shows the effectiveness of a patient-managed and clinician-guided health tracker system and its potential to improve patient clinical profiles.Trial registrationClinicalTrials.gov NCT03200119; https://clinicaltrials.gov/ct2/show/NCT03200119 (Archived by WebCite at http://www.webcitation.org/6v01HaCdd).

Project description:BackgroundThe increasing demand for personal health record (PHR) systems is driven by individuals' desire to actively manage their health care. However, the limited functionality of current PHR systems has affected users' willingness to adopt them, leading to lower-than-expected usage rates. The HL7 (Health Level Seven) PHR System Functional Model (PHR-S FM) was proposed to address this issue, outlining all possible functionalities in PHR systems. Although the PHR-S FM provides a comprehensive theoretical framework, its practical effectiveness and applicability have not been fully explored.ObjectiveThis study aimed to design and develop a tethered PHR prototype in accordance with the guidelines of the PHR-S FM. It sought to explore the feasibility of applying the PHR-S FM in PHR systems by comparing the prototype with the results of previous research.MethodsThe PHR-S FM profile was defined to meet broad clinical data management requirements based on previous research. We designed and developed a PHR prototype as a web application using the Fast Healthcare Interoperability Resources R4 (FHIR) and Logical Observation Identifiers Names and Codes (LOINC) coding system for interoperability and data consistency. We validated the prototype using the Synthea dataset, which provided realistic synthetic medical records. In addition, we compared the results produced by the prototype with those of previous studies to evaluate the feasibility and implementation of the PHR-S FM framework.ResultsThe PHR prototype was developed based on the PHR-S FM profile. We verified its functionality by demonstrating its ability to synchronize data with the FHIR server, effectively managing and displaying various health data types. Validation using the Synthea dataset confirmed the prototype's accuracy, achieving 100% coverage across 1157 data items. A comparison with the findings of previous studies indicated the feasibility of implementing the PHR-S FM and highlighted areas for future research and improvements.ConclusionsThe results of this study offer valuable insights into the potential for practical application and broad adoption of the PHR-S FM in real-world health care settings.

Project description:BackgroundIntelligent personal assistants such as Amazon Echo and Google Home have become increasingly integrated into the home setting and, therefore, may facilitate behavior change via novel interactions or as an adjunct to conventional interventions. However, little is currently known about their potential role in this context.ObjectiveThis feasibility study aims to develop the Intelligent Personal Assistant Project (IPAP) and assess the acceptability and feasibility of this technology for promoting and maintaining physical activity and other health-related behaviors in both parents and children.MethodsThis pilot feasibility study was conducted in 2 phases. For phase 1, families who were attending a community-based weight management project were invited to participate, whereas phase 2 recruited families not currently receiving any additional intervention. Families were randomly allocated to either the intervention group (received a smart speaker for use in the family home) or the control group. The IPAP intervention aimed to promote positive health behaviors in the family setting through utilization of the functions of a smart speaker and its linked intelligent personal assistant. Data were collected on recruitment, retention, outcome measures, intervention acceptability, device interactions, and usage.ResultsIn total, 26 families with at least one child aged 5 to 12 years were recruited, with 23 families retained at follow-up. Across phase 1 of the intervention, families interacted with the intelligent personal assistant a total of 65 times. Although device interactions across phase 2 of the intervention were much higher (312 times), only 10.9% (34/312) of interactions were coded as relevant (related to diet, physical activity or well-being). Focus groups highlighted that the families found the devices acceptable and easy to use and felt that the prompts or reminders were useful in prompting healthier behaviors. Some further intervention refinements in relation to the timing of prompts and integrating feedback alongside the devices were suggested by families.ConclusionsUsing intelligent personal assistants to deliver health-related messages and information within the home is feasible, with high levels of engagement reported by participating families. This novel feasibility study highlights important methodological considerations that should inform future trials testing the effectiveness of intelligent personal assistants in promoting positive health-related behaviors.Trial registrationISRCTN Registry ISRCTN16792534; http://www.isrctn.com/ISRCTN16792534.

Dataset Information

Impact of a Personal Health Record Intervention Upon Surveillance Among Colorectal Cancer Survivors: Feasibility Study.

Background

Objective

Methods

Results

Conclusions

Publications

Impact of a Personal Health Record Intervention Upon Surveillance Among Colorectal Cancer Survivors: Feasibility Study.

Similar Datasets

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