The views of bowel cancer survivors and health care professionals regarding survivorship care plans and post treatment follow up

Background Breast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits. Objective The overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes. Methods We will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors’ online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties. Results We have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years. Conclusions The results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management. International Registered Report Identifier (IRRID) PRR1-10.2196/23414

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Perceived value of cancer survivorship care among Asians and Native Hawaiian/Pacific Islanders.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e22522 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e22522-e22522

Author(s):

Jared David Acoba ◽

Sharon Tamashiro ◽

Marci Chock

Keyword(s):

Cancer Survivors ◽

Racial Differences ◽

Cancer Survivorship ◽

Native Hawaiian ◽

Care Plan ◽

Survivorship Care Plan ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Care Plans

e22522 Background: Numerous studies have evaluated the impact of cancer survivorship care. However, no study to date has focused on Asian or Native Hawaiian/Pacific Islander (NH/PI) cancer survivors. It has been well documented that Asian and NH/PI patients often suffer from inferior cancer outcomes compared to White patients, and differences in their experience with cancer survivorship care could contribute to this disparity. Methods: Surveys were sent to 1410 cancer survivors who were treated at a community cancer center with curative intent and who had received survivorship care plans between Jan 2014 and June 2018. The 26-item questionnaire evaluated patients’ perception of various aspects of their survivorship care plan and follow-up physician visits. All responses were anonymous. Results: Of the 360 patients who responded, 24% were White, 54% Asian, and 13% NH/PI. Compared to Whites, Asian and NH/PI patients were younger (p = 0.004), less educated (p = 0.004), and reported a lower income (p < 0.0005). Among all patients, 62% reported that the survivorship care plan was “very helpful” and 86% rated their satisfaction with physician follow-up visits as “very good” to “excellent.” There were no racial differences in satisfaction with either survivorship care plan or physician follow-up. In a multivariate binary logistic regression, Asians and NH/PI patients were significantly more likely to rate ongoing survivorship care as helpful compared to Whites, OR 4.08 (95%CI, 2.13-7.82). Conclusions: There were no racial differences in patient satisfaction with their survivorship care plans and follow-up care. However, Asian and NH/PI patients valued ongoing cancer survivorship care follow-up significantly more than White patients. Whether more extensive survivorship care would lead to improved outcomes among Asian and NH/PI cancer patients should be investigated further.

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Shared Care For Hematologic Malignancy Survivors: Challenges Between Primary Care Physicians and Hematologist/Oncologists

Blood ◽

10.1182/blood.v122.21.2958.2958 ◽

2013 ◽

Vol 122 (21) ◽

pp. 2958-2958

Author(s):

Haleh Kadkhoda ◽

Clare Karten ◽

Emily Van Laar ◽

Elisa Weiss ◽

Kevin C. Oeffinger ◽

...

Keyword(s):

Primary Care ◽

Cancer Survivors ◽

Primary Care Physicians ◽

Clinical Information ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Effective Management ◽

Treatment Summaries ◽

Care Plans

Abstract Background Many cancer patients are cured, or have a series of remissions interspersed with periods of re-treatment. In 2006, the Institute of Medicine's From Cancer Patient to Cancer Survivor: Lost in Transition recommended comprehensive treatment summaries and follow-up care plans for all cancer survivors. [Parry 2013] There were about 14 million cancer survivors in the US as of January 2012; this population is expected to be 18 million by 2022. [Siegel 2012] Among survivors, 64% have survived 5 years or more; 40% have survived 10 years or more; and 15% have survived 20 years or more after diagnosis. [de Moor 2013] Many survivors in this growing population experience physical, psychological, and/or financial long-term/ late effects. The complexities of managing cancer survivors suggest their care should not be conceived as a transition from the hematologist/oncologist to the primary care provider, but rather as an ongoing, flexible collaboration determined by individual survivor needs. Methods Polling surveys were conducted within the 2012 online education activity Sharing Care for Survivors of Hematologic Malignancies, developed by The Leukemia & Lymphoma Society and Medscape Oncology. Case-based education was delivered by an expert panel of hematologist/oncologists (Hem/Oncs) and primary care physicians (PCPs) to illustrate effective communication methods and critical communication points between (Hem/Oncs) and (PCPs). Results As of June 30, 116 Hem/Oncs and 171 PCPs overall responded to the polling surveys, which address current practices and barriers in shared care of cancer survivors. Responses were analyzed to identify gaps in continuity of care among specialties. A summary of responses shows the most significant barrier in effective management is the lack of survivorship care plans and treatment summaries (41% Hem/Oncs vs 51% PCPs). Only 8% and 5% of Hem/Oncs and PCPs, respectively, use survivorship care plans, although both Hem/Oncs and PCPs agreed that such plans and summaries are the most useful communication vehicle among professionals (73% Hem/Oncs vs 67% PCPs). PCPs used patient self-reported data more frequently to document cancer treatment, compared with Hem/Oncs (21% vs 7%, respectively); Hem/Oncs used caregiver reports more often than did PCPs (12% vs 3%, respectively). Similar numbers of Hem/Oncs and PCPs estimated that PCPs spend more than 4 hours of non-reimbursed time weekly researching issues related to patient care (47% Hem/Oncs vs 41% PCPs). Despite progress in electronic health records and widespread Internet access, these physicians most typically use the phone to communicate about the management of cancer survivors (64% Hem/Oncs vs 74% PCPs), followed by faxed/mailed letters, with email ranking as least used. Lack of prompt communication between Hem/Oncs and PCPs was the second highest barrier listed by respondents to effective management (22% and 27%, respectively). Conclusion Analysis of the Hem/Onc and PCP learner responses to the polling surveys point to clinical complexities and persistent challenges in the co-management of survivors of hematologic cancers. The challenges relate to communication, technological, healthcare system and healthcare coverage issues.Timely, ongoing communication of the right clinical information between Hem/Oncs and PCPs is essential for optimal management of the growing number of cancer survivors. Hem/Oncs and PCPs devote significant time each week to addressing the cancer survivors' needs; the lack of reimbursed time for PCPs may be an impediment to optimal care. Hem/Oncs and PCPs place a high value on the utility of survivorship care plans; however, they are not widely used. Phone calls are the current preferred communication mode. Until other technological solutions are more widely used to share clinical information, it is important to employ practical solutions, such as providing PCPs with information to help prioritize cancer survivors' follow-up care needs and providing patients/caregivers with brief cancer treatment summaries. Communication strategies to address potentially preventable causes of death, such as cardiac disease and second cancers, as well as acknowledgment and treatment for anxiety and depression related issues [Harrington 2010], which often accompany the uncertainty many cancer survivors live with, are critical. Disclosures: No relevant conflicts of interest to declare.

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Potential determinants of health-care professionals’ use of survivorship care plans: a qualitative study using the theoretical domains framework

Implementation Science ◽

10.1186/s13012-014-0167-z ◽

2014 ◽

Vol 9 (1) ◽

Cited By ~ 19

Author(s):

Sarah A Birken ◽

Justin Presseau ◽

Shellie D Ellis ◽

Adrian A Gerstel ◽

Deborah K Mayer

Keyword(s):

Health Care ◽

Qualitative Study ◽

Health Care Professionals ◽

Theoretical Domains Framework ◽

Determinants Of Health ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Care Plans

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Potential Benefits of Treatment Summaries for Survivors' Health and Information Needs: Results From a LIVESTRONG Survey

Journal of Oncology Practice ◽

10.1200/jop.2013.000973 ◽

2014 ◽

Vol 10 (1) ◽

pp. 75-78 ◽

Cited By ~ 11

Author(s):

Ruth Rechis ◽

Ellen B. Beckjord ◽

Stephanie Nutt

Keyword(s):

Health Care ◽

Cancer Survivors ◽

Information Needs ◽

Primary Treatment ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Health Care Teams ◽

Treatment Summaries ◽

Care Plans ◽

Potential Benefits

Cancer survivors cannot benefit from treatment summaries or survivorship care plans if health care teams are not able to execute them. The authors discuss aims to help bridge this gap and equip survivors with the best resources possible at the start of primary treatment.

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Exploring Interactive Survivorship Care Plans to Support Breast Cancer Survivors: Protocol for a Randomized Controlled Trial (Preprint)

10.2196/preprints.23414 ◽

2020 ◽

Author(s):

Akshat Kapoor ◽

Priya Nambisan

Keyword(s):

Breast Cancer ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Self Management ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Breast Cancer Survivorship ◽

Care Plans ◽

The Impact

BACKGROUND Breast cancer is the most common form of cancer among American women, accounting for 23% of all cancer survivors nationally. Yet, the availability of adequate resources and tools for supporting breast cancer survivors has not kept up with the rapid advancement in treatment options, resulting in unmet supportive care needs, particularly among low-income and minority populations. This study explores an alternative means of delivering breast cancer survivorship care plans (SCPs), with the aim of improving survivor morbidity, patient knowledge, and self-management of treatment-related symptoms, as well as addressing inconsistencies in follow-up care visits. OBJECTIVE The overall goal of this study is to improve the uptake of SCP recommendations via an educational intervention for breast cancer survivors, to improve treatment-related morbidity, patient knowledge, self-management, and adherence to follow-up visits. The specific aims of the study are to (1) evaluate the feasibility of the online SCP, and (2) assess the impact of the online SCP on survivorship outcomes. METHODS We will enroll 50 breast cancer survivors who have completed initial breast cancer treatment into a 2-armed, randomized, waitlist-controlled pilot trial, and collect data at baseline and 6 months. For the first aim, we will use mixed methods, including surveys and personal interviews among the intervention group, to determine the feasibility of providing an online, interactive SCP (called ACESO) based on the survivors’ online user experience and their short-term adoption. For the secondary aim, we will compare the 2 groups to assess the primary outcomes of survivor knowledge, self-efficacy for self-management, perceived peer support, and adherence to SCP-recommended posttreatment follow-up visits to oncology and primary care; and the secondary outcomes of treatment-related morbidity (body weight, fatigue, depression, anxiety, sexual function, distress, and sleep quality). We assess these outcomes by using measurements from validated instruments with robust psychometric properties. RESULTS We have developed and refined the online breast cancer survivorship plan, ACESO, with consultation from breast cancer oncologists, nurses, and survivors. Approval for the study protocol has been obtained from the Institutional Review Board. An advisory board has also been established to provide oversight and recommendations on the conduct of the study. The study will be completed over a period of 2 years. CONCLUSIONS The results of this pilot study will inform the feasibility and design of a larger-scale pragmatic trial to evaluate the impact of an online breast cancer SCP on treatment-related morbidity and self-efficacy for self-management. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/23414

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Provision and Discussion of Survivorship Care Plans Among Cancer Survivors: Results of a Nationally Representative Survey of Oncologists and Primary Care Physicians

Journal of Clinical Oncology ◽

10.1200/jco.2013.51.7540 ◽

2014 ◽

Vol 32 (15) ◽

pp. 1578-1585 ◽

Cited By ~ 104

Author(s):

Danielle Blanch-Hartigan ◽

Laura P. Forsythe ◽

Catherine M. Alfano ◽

Tenbroeck Smith ◽

Larissa Nekhlyudov ◽

...

Keyword(s):

Cancer Survivors ◽

Primary Care Physicians ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Factors Associated ◽

Care Plans ◽

Follow Up Care ◽

Nationally Representative ◽

Survivorship Care Planning

Purpose Survivorship care planning should involve discussions between providers and cancer survivors to address survivors' needs and optimize adherence. We examined the frequency and factors associated with oncologists' and primary care physicians' (PCPs) reports of provision of written survivorship care plans (SCPs) and discussion of survivorship care recommendations with survivors. Methods A nationally representative sample of 1,130 oncologists and 1,020 PCPs was surveyed about survivorship care practices with survivors. Logistic regression models predicted multilevel factors associated with providing SCPs or discussing recommendations with survivors. Results Although a majority of oncologists (64%) reported always/almost always discussing survivorship care recommendations with survivors, fewer also discussed who survivors should see for cancer-related and other follow-up care (32%); fewer still also provided a written SCP to the survivor (< 5%). Survivorship care recommendations and provider responsibility were not regularly discussed by PCPs and survivors (12%). Oncologists who reported detailed training about late and long-term effects of cancer were more likely to provide written SCPs (odds ratio [OR], 1.73; 95% CI, 1.22 to 2.44) and discuss survivorship care planning with survivors (OR, 2.02; 95% CI, 1.51 to 2.70). PCPs who received SCPs from oncologists were 9× more likely (95% CI, 5.74 to 14.82) to report survivorship discussions with survivors. Conclusion A minority of both PCPs and oncologists reported consistently discussing and providing SCPs to cancer survivors. Training and knowledge specific to survivorship care and coordinated care between PCPs and oncologists were associated with increased survivorship discussions with survivors. These nationally representative data provide a useful benchmark to assess implementation of new efforts to improve the follow-up care of survivors.

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