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 ◽  
...  

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.

2018 ◽  
Author(s):  
Will L Tarver ◽  
Bruce W Robb ◽  
David A Haggstrom

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.


JMIR Cancer ◽  
10.2196/10692 ◽  
2019 ◽  
Vol 5 (2) ◽  
pp. e10692
Author(s):  
Will L Tarver ◽  
Bruce W Robb ◽  
David A Haggstrom

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.


2015 ◽  
Vol 25 (6) ◽  
pp. 729-731 ◽  
Author(s):  
Kimlin Tam Ashing ◽  
Lily Lai ◽  
Shirley Brown ◽  
Kommah McDowell ◽  
DeBorrah Carter ◽  
...  

2019 ◽  
Vol 13 (2) ◽  
pp. 180-186 ◽  
Author(s):  
L. Aubree Shay ◽  
Susanne Schmidt ◽  
Shayda I. Dioun ◽  
Allison Grimes ◽  
Leanne Embry

2011 ◽  
Vol 29 (15_suppl) ◽  
pp. 6082-6082 ◽  
Author(s):  
D. Coyle ◽  
E. Grunfeld ◽  
K. Coyle ◽  
J. A. Julian ◽  
G. R. Pond ◽  
...  

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 45-45
Author(s):  
Kaitlin Bomar ◽  
Nicole Vickery ◽  
Meagan Duggan ◽  
Tina Redenz ◽  
Tracey Lukker ◽  
...  

45 Background: In 1974, Giulio D' Angio,MD, stated “Cure Is Not Enough” and the concept of Survivorship was ignited. Multidisciplinary survivorship clinics have since become a mainstay of many pediatric cancer programs; few such clinics exist in adult cancer programs, especially in community practice. We report on the development of a survivorship care plan and a community-based clinic designed to provide guideline-driven after care for cancer survivors. Methods: An overview of the vision and mission of the Bone Secours St. Francis Cancer Center Survivorship Program is provided. Descriptive analysis of the components and metrics of success are provided, in the context of accrediting organizations requirements for current and future goals for survivorship care. Results: BSSF, which is a non-academic, community-based cancer program, and receives over 1300 referrals annually from a referral population of 1.32 million in 10 counties. St. Francis , accredited by both the Commission on Cancer and National Accreditation Program for Breast Centers, has been providing cancer‐related services to the Upstate South Carolina region for a decade. The survivorship program at St. Francis is a STAR‐certified program and is a patient‐centered service provided in a comprehensive and coordinated multidisciplinary team approach, including integrated psychologic care. A custom survivorship care plan was developed and efforts, including successes and barriers, to implementation of plans for all cancer survivors in accordance with CoC and NAPBC goals are addressed. Conclusions: The BSSF Cancer Center Survivorship Program has developed a practical, yet comprehensive SCP, which is risk-adapted and guideline-driven in order to provide customized survivorship education and monitoring. The MDC provides comprehensive evaluations and recommendations in order to maximize health and well-being of patients navigating life after cancer diagnosis and treatment. Our efforts have demonstrated that survivorship clinics of this nature can be established and successful in a non-academic community setting.


2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 58-58
Author(s):  
Claire Michelle Sutherby (Bennett)

58 Background: More than 15.5 million cancer survivors live in the United States. This number is expected to be over 20 million by 2026. Cancer survivors have increased risk of morbidity; therefore, preventive and on-going medical treatment requires close monitoring and coordination. The Institute of Medicine’s (IOM) 2005 report, Cancer Patient to Cancer Survivor: Lost in Transition, recommended health providers raise awareness of cancer survivors’ needs and establish cancer survivorship as a distinct phase of care. The IOM also recommended patients who complete primary treatment are provided a comprehensive summary and plan that is effectively explained. A survivorship care plan maps out and improves care related to accessibility of past diagnosis and treatment history, surveillance guidelines, and potential long term side effects. In 2012, the Commission on Cancer (CoC) added Standard 3.3 Survivorship Care Planto the program standards. This met the IOM’s objective of addressing potential patients that get “lost” as they transition from care they received during treatment through phases of their life or disease. Methods: The Cancer Committee within a CoC certified organization developed multiple strategies to address the IOM and CoC standards. Strategies included a process to disseminate a comprehensive care summary for cancer patients who are completing primary treatment, adoption of the American Society of Clinical Oncology’s Treatment Summary and Survivorship Care Plan template, and adding a survivorship nurse navigator to the interprofessional treatment team. The survivorship nurse navigator monitors and reviews survivorship care plans with patients, advises when to seek treatment for symptoms, discusses surveillance guidelines, navigates patients through therapies, and educates on prevention and screening. Results: Evaluation for quality of life and compliance with individualized surveillance guidelines is ongoing. Conclusions: The oncology nurse navigator role is uniquely positioned to lead care coordination and improve outcomes through the continuum of care. Providing patients with a summary of their treatment and a plan moving forward may decrease stress related to the transition from active treatment to survivorship.


2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 49-49
Author(s):  
Amy Eiko Leatherwood ◽  
Charles R. Thomas ◽  
Sara J Walker ◽  
Susan Hedlund

49 Background: The 2015 Commission on Cancer standard requires that cancer survivors receive a personalized survivorship care plan (SCP). There exists a gap in consistency of how and when this plan is delivered. There is a need to evaluate patient satisfaction with personalized care along with direct education regarding the SCP and follow up. The aim of the current study was to determine the 1) rate at which cancer survivors find in-person discussion of SCP helpful, and 2) the rate at which they find the in-person discussion more helpful than the alternatives. Methods: An anonymous questionnaire was routinely administered, for quality assurance purposes, to cancer patients who completed treatment in a radiation oncology setting at a NCI-Designated Cancer Center. The population consisted of survivors of breast, prostate, colon, anal, pancreatic, lung, and liver cancers. Patients were given the questionnaire at the conclusion of a survivorship visit with a nurse practitioner devoted to survivorship care. During the visit they received a SCP with full discussion and explanation of the content. The questionnaire asks two Yes/No questions: 1) Did you find the survivorship visit helpful and/or educational? 2) Was it more helpful to have the survivorship summary explained to you in person? Results: 71 survivorship visit patients were offered a questionnaire to complete at the end of their visit. 71 completed questionnaires were received from patients. Of these 71 questionnaires, 69/71 or 97% of responses were “yes” for question 1. For question 2, 68/71, or 96% of responses were “yes.” Conclusions: Our data show that the majority of patients are finding survivorship summaries to be a positive aspect of the care continuum. In addition, patients are also indicating that visits “in person,” with face-to-face explanation of survivorship summaries, are more helpful than receiving a summary without verbal involvement or explanation. These findings suggest that such in-person discussions could be considered important in quality cancer care. Future directions include investigating the effect of other individual, disease, or treatment characteristics on an individual’s preference for SCP delivery.


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