scholarly journals Usefulness and Usability of a Personal Health Record and Survivorship Care Plan for Colorectal Cancer Survivors: Survey Study (Preprint)

2018 ◽  
Author(s):  
Will L Tarver ◽  
Bruce W Robb ◽  
David A Haggstrom
Keyword(s):  
Colorectal Cancer ◽  
Health Care ◽  
Cancer Survivors ◽  
Personal Health Record ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Personal Health ◽  
Health Record ◽  
Survivorship Care ◽  
The Impact

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.

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

JMIR Cancer ◽  
10.2196/10692 ◽  
2019 ◽  
Vol 5 (2) ◽  
pp. e10692
Author(s):  
Will L Tarver ◽  
Bruce W Robb ◽  
David A Haggstrom
Keyword(s):  
Colorectal Cancer ◽  
Health Care ◽  
Cancer Survivors ◽  
Personal Health Record ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Personal Health ◽  
Health Record ◽  
Survivorship Care ◽  
The Impact

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.

scholarly journals Colorectal Cancer Survivors' Needs and Preferences for Survivorship Information

2014 ◽  
Vol 10 (4) ◽  
pp. e277-e282 ◽  
Author(s):  
Talya Salz ◽  
Shrujal S. Baxi ◽  
Victoria S. Blinder ◽  
Elena B. Elkin ◽  
Margaret M. Kemeny ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Cancer Survivors ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Cancer History ◽  
Colorectal Cancer Survivors

In the absence of a survivorship care plan, colorectal cancer survivors still generally understood their cancer history; however, many lacked knowledge of ongoing risks and prevention.

Cost Effectiveness of a Survivorship Care Plan for Breast Cancer Survivors

2014 ◽  
Vol 10 (2) ◽  
pp. e86-e92 ◽  
Author(s):  
Doug Coyle ◽  
Eva Grunfeld ◽  
Kathryn Coyle ◽  
Gregory Pond ◽  
Jim A. Julian ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Cost Effectiveness ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Cost Effective ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Effective Use

The authors conclude that this survivorship care plan would be costly to introduce and would not be a cost-effective use of scarce health care resources.

The impact of survivorship care plans on knowledge among breast cancer survivors.

2013 ◽  
Vol 31 (26_suppl) ◽  
pp. 124-124
Author(s):  
Kaleigh Bulloch ◽  
Melinda Irwin ◽  
Anees B. Chagpar ◽  
Nina Ruth Horowitz ◽  
Brigid K. Killelea ◽  
...  
Keyword(s):  
Side Effects ◽  
Cancer Survivors ◽  
Cancer Treatment ◽  
Specific Treatment ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Patient Knowledge ◽  
Survivorship Care ◽  
Care Plans ◽  
The Impact

124 Background: Despite the Institute of Medicine’s recommendation that all cancer survivors be provided with a survivorship care plan (SCP), there is limited information as to whether SCPs improve knowledge. The purpose of this study was to examine the impact of SCPs on patient knowledge regarding tumor stage, cancer treatment and potential risk of long-term side effects, surveillance recommendations, and perceived knowledge of their therapy. Methods: 75 English-speaking women over the age of 18 were enrolled in this prospective study. The participants’ treatment progress was tracked through the electronic medical record and used to create the SCP, which was given to them at the completion of treatment (defined as the time patients had completed radiation and/or chemotherapy treatments and initiated on hormonal therapy, if applicable). Knowledge of stage, treatments, potential side effects, and surveillance recommendations were assessed before receiving the SCP and again two months later. Accuracy of responses was compared using the McNemar test. Results: The median patient age was 56.8 ± 12.5 and 47.1% were stage I, 37.3% were stage II, and 15.7% were stage III. Participants were statistically more accurate in identifying their stage after receiving their SCP than at baseline (72.6% vs. 92.2%, p = 0.0016). While many patients were more accurate in the identification of the cancer treatment they received after SCP, the only significant improvement was in identifying 5-Fluorouracil as chemotherapy received (65.5% vs. 89.7%, p=0.0196). Patients were more accurate in identifying potential side effects but were only statistically more accurate at identifying leukemia as a risk factor (36.0% vs. 46.9%, p=0.0348). At baseline and follow up patients perceived that they had a high level of understanding as it related to their cancer stage (60.4%, and 66.7%), treatment (69.4%, and 71.4%), and surveillance recommendations (61.4%, and 54.6%). Conclusions: SCPs appear to improve patient knowledge in several important areas including basic and specific treatment details, surveillance recommendations, and potential side effects. Delivery of a SCPs is one strategy to improve knowledge of treatments received.

The impact of the survivorship care plan on health care use: 2-year follow-up results of the ROGY care trial

2017 ◽  
Vol 12 (1) ◽  
pp. 18-27 ◽  
Author(s):  
Mette Moustgaard Jeppesen ◽  
Nicole P. M. Ezendam ◽  
Johanna M. A. Pijnenborg ◽  
M. Caroline Vos ◽  
Dorry Boll ◽  
...  
Keyword(s):  
Health Care ◽  
Health Care Use ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
The Impact

scholarly journals Perspectives of Survivorship Care Plans Among Older Breast Cancer Survivors: A Pilot Study

2020 ◽  
Vol 27 (1) ◽  
pp. 107327482091720
Author(s):  
Jessica L. Krok-Schoen ◽  
Michelle J. Naughton ◽  
Anne M. Noonan ◽  
Janell Pisegna ◽  
Jennifer DeSalvo ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Care ◽  
Pilot Study ◽  
Focus Groups ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Care Providers ◽  
Term Care

The Commission on Cancer’s standard 3.3 represents a paradigm shift in the care of cancer survivors, recommending that survivors receive a treatment summary and survivorship care plan (SCPs). A focus on older breast cancer survivors is needed, as they are the majority of the breast cancer population and their experiences and perspectives of SCPs is limited in the literature. This pilot study utilized a mixed methods approach (focus groups and self-report questionnaire data) to gather information on older (≥65 years) breast cancer survivors’ perspectives of their SCPs, cancer survivorship, and communication with their health-care providers. The questionnaire was completed individually by the participants prior to the focus group and contained items on basic demographics and their health status following cancer treatment. The focus groups indicated that only a minority of women actually developed a SCP. Those who developed a SCP in collaboration with their providers valued the personal care and attention received. However, some participants reported poor communication with their providers and within their health-care team, resulting in frustration and confusion. Participants’ suggestions for ideal SCPs included better education and personalization, particularly in appropriate nutrition and exercise, and managing side effects and comorbidities. Lastly, the women believed that additional long-term care resources, such as health coaches, were important in improving their survivorship. These findings provide insight into enhancing the content, communication, and application of SCPs to improve the survivorship experience of older breast cancer survivors.

scholarly journals Developing a treatment summary and survivorship care plan responsive to African‐American breast cancer survivors

2015 ◽  
Vol 25 (6) ◽  
pp. 729-731 ◽  
Author(s):  
Kimlin Tam Ashing ◽  
Lily Lai ◽  
Shirley Brown ◽  
Kommah McDowell ◽  
DeBorrah Carter ◽  
...  
Keyword(s):  
Breast Cancer ◽  
African American ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
Treatment Summary
Sign in / Sign up

Export Citation Format

Share Document