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

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

Supporting people with active and advanced disease: a rapid review of the evidence

1.1 Background: the NCSI AAD group The National Cancer Survivorship Initiative (NCSI, 2010) was set up in response to the NHS Cancer Reform Strategy (Department of Health, 2007) as a collaboration between Macmillan Cancer Support, the Department of Health and NHS Improvement, with the goal to achieve a better understanding of the experiences of cancer survivors and to advocate for the provision of services to support them. Within this broad remit, it was recognised that there was a particular group of patients whose needs were commonly neglected; people who were experiencing the ongoing effects of cancer beyond first-line treatment but who were not at end of life. The Active and Advanced Disease (AAD) working group was created to consider issues of relevance to such people. 1.2 Aims of this review This project set out to meet the following aim: To review the literature on selected cancers in order to identify implications for the development of services to support patients experiencing difficulties associated with active and advanced disease

An evaluation of the progress made towards the implementation of treatment summaries for cancer patients across Wessex

This report details an evaluation of the implementation of treatment summaries for cancer patients across the Wessex Deanery, encompassing Hampshire, Dorset and the Isle of Wight. The service evaluation commenced at the end of September 2015 and this report presents the progress made towards the implementation of cancer treatment summaries (CT) across the Wessex Deanery and service users’ experiences of receiving the TSs from two NHS Trusts in the catchment area. The survey results present the progress that has been made in the first six months of implementation and include descriptive data relating to the progress and process of implementation. The qualitative findings from an analysis of service user experience are presented and the findings from the evaluation are discussed in the context of national policy and the wider literature

Critical research gaps and recommendations to inform research prioritisation for more effective prevention and improved outcomes in colorectal cancer

OBJECTIVE: Colorectal cancer (CRC) leads to significant morbidity/mortality worldwide. Defining critical research gaps (RG), their prioritisation and resolution, could improve patient outcomes.DESIGN: RG analysis was conducted by a multidisciplinary panel of patients, clinicians and researchers (n=71). Eight working groups (WG) were constituted: discovery science; risk; prevention; early diagnosis and screening; pathology; curative treatment; stage IV disease; and living with and beyond CRC. A series of discussions led to development of draft papers by each WG, which were evaluated by a 20-strong patient panel. A final list of RGs and research recommendations (RR) was endorsed by all participants.RESULTS: Fifteen critical RGs are summarised below: RG1: Lack of realistic models that recapitulate tumour/tumour micro/macroenvironment; RG2: Insufficient evidence on precise contributions of genetic/environmental/lifestyle factors to CRC risk; RG3: Pressing need for prevention trials; RG4: Lack of integration of different prevention approaches; RG5: Lack of optimal strategies for CRC screening; RG6: Lack of effective triage systems for invasive investigations; RG7: Imprecise pathological assessment of CRC; RG8: Lack of qualified personnel in genomics, data sciences and digital pathology; RG9: Inadequate assessment/communication of risk, benefit and uncertainty of treatment choices; RG10: Need for novel technologies/interventions to improve curative outcomes; RG11: Lack of approaches that recognise molecular interplay between metastasising tumours and their microenvironment; RG12: Lack of reliable biomarkers to guide stage IV treatment; RG13: Need to increase understanding of health related quality of life (HRQOL) and promote residual symptom resolution; RG14: Lack of coordination of CRC research/funding; RG15: Lack of effective communication between relevant stakeholders.CONCLUSION: Prioritising research activity and funding could have a significant impact on reducing CRC disease burden over the next 5 years.</p

Do patients with long-term side effects of cancer treatment benefit from general practitioner support? A literature review

Background: Alongside specialist cancer clinics, general practitioners have an important role in cancer patients’ follow-up care, yet no literature summarises the nature, extent and impact of their involvement. This paper addresses this issue through a review of the literature. Methods: Studies were sourced from six academic databases - AustHealth (n = 202), CINAHL (n = 500), the Cochrane Library (reviews and trials; n = 200), Embase (n = 368), PHCRIS (n = 132) and PubMed/Medline (n = 410). Studies that focused on interventions designed for patients receiving follow-up care and reported cancer care provided by a general practitioner delivered alongside specialist care were reviewed. Results: A total of 19 papers were identified as relevant for this review (3 randomised control trials; 4 cross-sectional, 5 cohort and 3 qualitative studies, and 3 systematic reviews). The reviewed studies indicated that providing general practitioner-led supportive interventions for post-treatment care of cancer patients is feasible and acceptable to patients. General practitioner involvement resulted in improved physical and psychosocial well-being of patients and continuity of care, especially for patients with concomitant health conditions. Conclusion: Involving general practitioners in post-treatment cancer care is beneficial to patients. However, proactive initiatives that encourage and facilitate patients to consult their general practitioner about their needs or symptoms of recurrence should be considered

Psychometric Evaluation and Design of Patient-Centered Communication Measures for Cancer Care Settings

Objective To evaluate the psychometric properties of questions that assess patient perceptions of patient-provider communication and design measures of patient-centered communication (PCC). Methods Participants (adults with colon or rectal cancer living in North Carolina) completed a survey at 2 to 3 months post-diagnosis. The survey included 87 questions in six PCC Functions: Exchanging Information, Fostering Health Relationships, Making Decisions, Responding to Emotions, Enabling Patient Self-Management, and Managing Uncertainty. For each Function we conducted factor analyses, item response theory modeling, and tests for differential item functioning, and assessed reliability and construct validity. Results Participants included 501 respondents; 46% had a high school education or less. Reliability within each Function ranged from 0.90 to 0.96. The PCC-Ca-36 (36-question survey; reliability=0.94) and PCC-Ca-6 (6-question survey; reliability=0.92) measures differentiated between individuals with poor and good health (i.e., known-groups validity) and were highly correlated with the HINTS communication scale (i.e., convergent validity). Conclusion This study provides theory-grounded PCC measures found to be reliable and valid in colorectal cancer patients in North Carolina. Future work should evaluate measure validity over time and in other cancer populations. Practice implications The PCC-Ca-36 and PCC-Ca-6 measures may be used for surveillance, intervention research, and quality improvement initiatives

2016 - 2020 Colorado cancer plan : the roadmap to reducing the burden of cancer in Colorado

The Colorado Cancer Plan has guided the prevention, treatment and control of cancer statewide for more than 20 years. The 2016-20 state cancer plan continues in that tradition, providing a five-year framework to reduce the risk, incidence and mortality associated with cancer in Colorado. This plan represents a shared approach to overcoming Colorado\u2019s cancer challenges through primary prevention, early detection, effective treatment and support for survivors from the time of diagnosis until the end of life.This five-year plan is built on a strong foundation. It describes the state\u2019s cancer burden, including the disparate impact cancer has on Colorado\u2019s low-income, uninsured and racial/ethnic populations. It paints a picture of a state health care climate conducive to reducing that burden, building on the contributions and opportunities from health care reform. And it traces the history of cancer control in Colorado and the evolution of the collaborative statewide efforts to reduce the impact cancer has on Coloradans.Publication date from document properties.colorado_ccc_plan.pdfcooperative agreement 5U58DP00386