Assessing the impact of an online survivorship program.

e285 Background: In the report From Cancer Patient to Cancer Survivor: Lost in Transition (2006), the Institute of Medicine identified follow-up of cancer survivors as a missing link in cancer care and made recommendations to the medical establishment to fill that gap. So far, studies of recommendation effectiveness have revolved around survivorship care plan implementation. However, a 2013 study indicated that use of SCPs is still more the exception than the rule. Methods: We have created a unique online program that is intended to address two key mandates of the IOM report: 1) Educationfor theprevention of recurrent and new cancers, and 2) Self-carestrategiesto help deal with consequences of cancer and its treatment i.e. lymphedema, fatigue; [and] psychological distress. Dr. Helayne Waldman and Dr. Shani Foxhave fashioned an online, real time, 12 week education and support program for cancer survivors, the first of its type in the U.S. The focus of the content is on maintaining wellness after treatment and includes topics such as physical activity, dietary guidelines, inflammation control and stress management. The program also contains a coaching component, where participants track their activities and share information via live discussion and interactive blogs. Results: We have established a framework for gathering, analyzing and reporting our data. Our target sample size is 40-50 participants. At the program’s outset we will administer a 20 question self-assessment to test participants’ knowledge of self-care practices and attitudes about their current state of wellness. At the program’s end in December we'll readminister in order to measure the change in both knowledge and attitude. We’ll then conduct an analysis of the data, and will report our findings at the ASCO meeting in January. Conclusions: We believe that education and support for survivors is critical to their physical and emotional well-being. Unfortunately, there is currently no program available to do this in a live, interactive format from the comfort of one’s home. We believe PCPs, hospital support groups and other non-profits will find this type of program to be an invaluable resource in serving to educate and manage the concerns of cancer survivors and to move closer to realizing the promise of the IOM report.

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The Bon Secours St. Francis Cancer Survivorship Program: A model for community-based multidisciplinary survivorship care.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.3_suppl.45 ◽

2016 ◽

Vol 34 (3_suppl) ◽

pp. 45-45

Author(s):

Kaitlin Bomar ◽

Nicole Vickery ◽

Meagan Duggan ◽

Tina Redenz ◽

Tracey Lukker ◽

...

Keyword(s):

South Carolina ◽

Cancer Survivors ◽

Well Being ◽

Academic Community ◽

Care Plan ◽

Survivorship Care Plan ◽

Cancer Center ◽

Team Approach ◽

Survivorship Care ◽

Community Based

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.

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QOL assessment integrated into the clinical care of cancer survivors to identify needs and direct care.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.15_suppl.6611 ◽

2019 ◽

Vol 37 (15_suppl) ◽

pp. 6611-6611

Author(s):

Christian S. Adonizio ◽

Jamie Weeder ◽

Erin Benner ◽

Jesse Manikowski ◽

Julie Hergenrather ◽

...

Keyword(s):

High Risk ◽

Cancer Therapy ◽

Cancer Survivors ◽

Clinical Care ◽

Well Being ◽

Direct Care ◽

Care Plan ◽

Survivorship Care Plan ◽

Curative Intent ◽

Curative Therapy

6611 Background: Validated survey tools have been used to measure the quality of life (QOL) of patients treated for cancer, however, there are newer studies that have shown both an improvement in QOL, and improvement in overall survival using these tools. We integrated the Functional Assessment of Cancer Therapy – General Population (FACT-GP v.4) to direct the deployment of resources and interventions to improve the care of patients who have completed potentially curative therapy for cancer. Methods: This is an observational study of patients who received cancer therapy with curative intent in the last 18 months. The FACT-GP was administered by an RN via telephone. Patients contacted received and reviewed a Survivorship Care Plan (SCP) as defined by the American College of Surgeons Committee on Cancer. Patients who had a total score less than 60 on FACT-GP and/or had a score less than 12 on the Emotional Well-Being subscale (EWB) were considered high-risk and were referred to the Survivorship MDC for in-person evaluation. Results: From 10/1/2018 to 12/31/2018, 114 patients were referred to the cancer survivorship program. Of these, 64 (56%) patients had FACT-GP administered and were evaluated. 45 of these (70%) only completed the FACT-GP and received an SCP. 21 patients had a total score less than 60 and/or an EWB sub-score less than 12 and were identified as high-risk. 15 (72%) patients were seen in MDC, 4 (19%) patients were seen in conjunction with a scheduled appointment by the MDC team, 2 (9%) patients refused further evaluation. 66.7% of patients in the survivorship program were referred to Oncology Behavioral Health compared to 18.2% of all oncology patients. Survivorship patients in the cohort had a baseline utilization of the emergency department (ED) of 4.1% (10 of 241) from 1/1/2018 to 9/30/2018 and 0 (0 of 64) after the initiation of the intervention from 10/1/2018 to 12/31/2018. Conclusions: Integrating a validated QOL tool (FACT-GP) as a therapeutic intervention is feasible and may both identify needs and direct services for cancer survivors while possibly decreasing ED utilization. Clinical trial information: NCT03835052.

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Impact of a natural disaster on access to care and biopsychosocial outcomes among Hispanic/Latino cancer survivors

10.1101/19009704 ◽

2019 ◽

Author(s):

Mary Rodriguez-Rabassa ◽

Ruthmarie Hernandez ◽

Zindie Rodriguez ◽

Claudia B. Colon-Echevarria ◽

Lizette Maldonado ◽

...

Keyword(s):

Health Care ◽

Cancer Survivors ◽

Support Groups ◽

Inflammatory Cytokines ◽

Barriers To Care ◽

Community Support ◽

Well Being ◽

Health Care Facilities ◽

Post Traumatic ◽

The Impact

AbstractCancer is the leading cause of death in Puerto Rico (PR). Hurricane Maria (HM) and its aftermath lead to widespread devastation in the island, including the collapse of the healthcare system. Medically fragile populations, such as cancer survivors, were significantly affected. The goal of this study was to assess the impact of HM on barriers to care, emotional distress, and inflammatory biomarkers among cancer survivors in PR. This exploratory longitudinal study was conducted in health care facilities and community support groups from PR. Cancer survivors (n=50) and non-cancer participants (n=50) completed psychosocial questionnaires and provided blood samples that were used to assess inflammatory cytokines levels. Data were analyzed through descriptive, frequencies, correlational, and linear regression analyses. Cancer survivors that were affected by HM reported increased barriers in accessing medical care, which were directly associated with anxiety, perceived stress, and post-traumatic symptomatology. Moreover, being a cancer survivor, along with closeness in time from HM predicted more barriers to receiving health care. Several inflammatory cytokines, such as CD31, BDNF, TFF3, Serpin E-1, Vitamin D BP, VCAM-1, Osteopontin, Chitinase 3 like 1, MMP-9 and MIF were significantly upregulated in cancer survivors while BDNF, MMP9 and Osteopontin had significant positive correlations with barriers to care. HM significantly impacted Puerto Ricans psychosocial well-being. Cancer survivors had significant barriers to care and showed increased serum inflammatory cytokines, but didn’t show differences in anxiety, stress and post-traumatic symptoms compared to non-cancer participants.

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

10.2196/preprints.10692 ◽

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.

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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.

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

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.26_suppl.124 ◽

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.

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What do social media savvy cancer survivors tell us about the state of survivorship programs?

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.5_suppl.57 ◽

2017 ◽

Vol 35 (5_suppl) ◽

pp. 57-57

Author(s):

Diane Mary Radford ◽

Alicia C. Staley ◽

Jeffrey Landercasper ◽

Leah L. Dietrich ◽

Choua A Vang ◽

...

Keyword(s):

Social Media ◽

Cancer Survivors ◽

Care Plan ◽

Survivorship Care Plan ◽

Trend Test ◽

Patient Portal ◽

Institute Of Medicine ◽

Patient Reported ◽

Paper Form ◽

Armitage Trend Test

57 Background: Patients treated for cancer are surviving their disease in increasing numbers. The 2005 Institute of Medicine (IOM) report From Cancer Patient to Cancer Survivor - Lost in Transition resulted in a call to develop survivorship programs. The Commission on Cancer (CoC) standard 3.3 became effective in 1/2015 requiring the delivery of a survivorship care plan (SCP) at the completion of treatment. Many cancer patients use social media (SM) as a way to obtain support and information. We sought to determine if SM savvy patients have received a SCP. Methods: An IRB-approved survey was conducted via the online tool SurveyMonkey between 3/21/2016 and 4/2/2016. Patients were invited to participate via SM outlets reaching cancer-related communities including Twitter chats, Facebook groups, blogs, and targeted emails. Cochran-Armitage Trend test, exact version, was performed by year for % of survivors receiving a SCP. Results: A total of 312 patients responded. 63% had completed their treatment (excluding endocrine therapy). Of a total of 194 individuals only 11.8% (23) were given a SCP at the end of treatment. A breakdown by treatment completion year is given below. Of those who did not receive a care plan 65% (112/172) answered that it would still be helpful to receive one. Most SCPs (86%) were supplied in paper form. However, patient-reported preferences for SCP delivery were paper (50%), online patient portal (41%), and email (9%). Conclusions: Despite the IOM report and CoC standard 3.3, the majority of SM savvy cancer survivors (88.2%) do not receive SCPs. In the respondents to this survey, there was no significant increase from 2015 onwards, p = 0.11, confirming an Advisory Board survey that just over 1/3 of programs felt confident that they could implement 3.3 by 2015. The CoC has updated its standard such that 25% of eligible patients should receive a plan by 12/31/2016. According to these data, that goal of 25% may not be achieved. [Table: see text]

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Patients-centered SurvivorShIp care plan after Cancer treatments based on Big Data and Artificial Intelligence technologies (PERSIST): a multicenter study protocol to evaluate efficacy of digital tools supporting cancer survivors

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-021-01603-w ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Izidor Mlakar ◽

Simon Lin ◽

Ilona Aleksandraviča ◽

Krista Arcimoviča ◽

Jānis Eglītis ◽

...

Keyword(s):

Artificial Intelligence ◽

Big Data ◽

Cancer Survivors ◽

Self Efficacy ◽

Digital Tools ◽

Care Plan ◽

Survivorship Care Plan ◽

Control Group ◽

System Usability Scale ◽

The Impact

Abstract Background It is encouraging to see a substantial increase in individuals surviving cancer. Even more so since most of them will have a positive effect on society by returning to work. However, many cancer survivors have unmet needs, especially when it comes to improving their quality of life (QoL). Only few survivors are able to meet all of the recommendations regarding well-being and there is a body of evidence that cancer survivors’ needs often remain neglected from health policy and national cancer control plans. This increases the impact of inequalities in cancer care and adds a dangerous component to it. The inequalities affect the individual survivor, their career, along with their relatives and society as a whole. The current study will evaluate the impact of the use of big data analytics and artificial intelligence on the self-efficacy of participants following intervention supported by digital tools. The secondary endpoints include evaluation of the impact of patient trajectories (from retrospective data) and patient gathered health data on prediction and improved intervention against possible secondary disease or negative outcomes (e.g. late toxicities, fatal events). Methods/design The study is designed as a single-case experimental prospective study where each individual serves as its own control group with basal measurements obtained at the recruitment and subsequent measurements performed every 6 months during follow ups. The measurement will involve CASE-cancer, Patient Activation Measure and System Usability Scale. The study will involve 160 survivors (80 survivors of Breast Cancer and 80 survivors of Colorectal Cancer) from four countries, Belgium, Latvia, Slovenia, and Spain. The intervention will be implemented via a digital tool (mHealthApplication), collecting objective biomarkers (vital signs) and subjective biomarkers (PROs) with the support of a (embodied) conversational agent. Additionally, the Clinical Decision Support system (CDSS), including visualization of cohorts and trajectories will enable oncologists to personalize treatment for an efficient care plan and follow-up management. Discussion We expect that cancer survivors will significantly increase their self-efficacy following the personalized intervention supported by the m-HealthApplication compared to control measurements at recruitment. We expect to observe improvement in healthy habits, disease self-management and self-perceived QoL. Trial registration ISRCTN97617326. https://doi.org/10.1186/ISRCTN97617326. Original Registration Date: 26/03/2021.

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Correction to: Survivorship Care Plan Implementation in US Cancer Programs: a National Survey of Cancer Care Providers

Journal of Cancer Education ◽

10.1007/s13187-018-1450-5 ◽

2018 ◽

Vol 34 (3) ◽

pp. 623-623 ◽

Cited By ~ 1

Author(s):

Sarah A. Birken ◽

Sarah Raskin ◽

Yuqing Zhang ◽

Gema Lane ◽

Alexandra Zizzi ◽

...

Keyword(s):

National Survey ◽

Cancer Care ◽

Care Plan ◽

Survivorship Care Plan ◽

Survivorship Care ◽

Care Providers ◽

Plan Implementation

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Validation of questionnaire-reported chest wall abnormalities with a telephone interview in Swiss childhood cancer survivors

BMC Cancer ◽

10.1186/s12885-021-08425-z ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Rahel Kasteler ◽

Christa Lichtensteiger ◽

Christina Schindera ◽

Marc Ansari ◽

Claudia E. Kuehni ◽

...

Keyword(s):

Risk Factors ◽

Cancer Survivors ◽

Childhood Cancer ◽

Chest Wall ◽

Daily Life ◽

Well Being ◽

Childhood Cancer Survivors ◽

Thoracic Wall ◽

Medical Attention ◽

The Impact

Abstract Background Chest wall abnormalities are a poorly studied complication after treatment for childhood cancer. Chest wall abnormalities are not well-described in the literature, and little is known on the impact on daily life of survivors. Methods We investigated prevalence and risk factors of chest wall abnormalities in childhood cancer survivors in a nationwide, population-based cohort study (Swiss Childhood Cancer Survivor Study) with a questionnaire survey. We then interviewed a nested sample of survivors to validate types of chest wall abnormalities and understand their impact on the daily life of survivors. Results Forty-eight of 2382 (95%CI 2–3%) survivors reported a chest wall abnormality. Risk factors were older age at cancer diagnosis (16–20 years; OR 2.5, 95%CI 1.0–6.1), lymphoma (OR 3.8, 95%CI 1.2–11.4), and central nervous system tumors (OR 9.5, 95%CI 3.0–30.1) as underlying disease, and treatment with thoracic radiotherapy (OR 2.0, 95%CI 1.0–4.2), surgery to the chest (OR 4.5, 95%CI 1.8–11.5), or chemotherapy (OR 2.9, 95%CI 1.0–8.1). The nature of the chest wall abnormalities varied and included thoracic wall deformities (30%), deformations of the spine (5%) or both (55%), and scars (10%). Chest wall abnormalities affected daily life in two thirds (13/20) of those who reported these problems and necessitated medical attention for 15 (75%) survivors. Conclusion It is important that, during follow-up care, physicians pay attention to chest wall abnormalities, which are rare late effects of cancer treatment, but can considerably affect the well-being of cancer survivors.

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