Digital Solutions for Cancer Survivorship Care (Preprint)

2018 ◽  
Author(s):  
Ingrid Oakley-Girvan ◽  
Sharon Davis ◽  
Dale G. O'Brien ◽  
Lidia Schapira ◽  
Allison W. Kurian ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Informal Care ◽  
Cancer Survivorship ◽  
Care Coordination ◽  
Cancer Care ◽  
Mobile App ◽  
Clinical Staff ◽  
Survivorship Care ◽  
Convenience Sample ◽  
Care Partners

BACKGROUND Both the National Cancer Institute (NCI) and the National Academy of Medicine have stressed the importance of survivorship care plans (SCP) for cancer survivors and discussed the significance of input from survivors and their advocates. However, there are many barriers to cancer care coordination and the creation of SCPs, including oncology staff time required to write them. Although survivors valued SCPs and liked them, few survivors or care partners report receiving survivorship information. Digital platforms can support cancer survivorship care by integrating with the existing Electronic Health Record and presenting information in a dynamic and user-friendly format that improves coordination and communication. OBJECTIVE In this paper, we describe including medical staff, survivors, and informal care partners in developing a user-centered design for TOGETHERCareTM, (Track Outcomes & Guidance, Technology for Health & Effective Resources for Care) a smartphone mobile app envisioned to provide critical functionality, including planning and sharing the SCP among survivors, physicians, and informal care partners. METHODS Two interviewers conducted a total of nine semi-structured interviews, including a convenience sample of three clinical staff who work with cancer survivors, three cancer survivors, and three informal care partners currently caring for cancer survivors. The interviews with Spanish-speaking survivors and care partners were conducted with a translator. Notes from the interviews were transcribed into a prepared template. The results were compiled and coded by two members of the team. RESULTS We identified areas of consistency in responses between the three different groups in terms of how the mobile app should work, as well as areas of difference. Additional suggestions for features for the mobile app are also presented. Clinical teams focused on the efficiency of using the app, and features that would improve follow-up visits with survivors. Survivors and care partners were more focused on features that would provide assistance with at-home medical tasks and activities of daily living. Although all three groups agreed that there is currently no systematic way for specialists to keep in touch with survivors once they have moved to community care, and that SCPs would be useful, they currently do not receive or provide a SCP. Survivors, care partners, and clinical staff all agreed that they have smartphones and that a mobile app including the ability to communicate between the different groups, along with other features would be welcome and useful. CONCLUSIONS The ubiquity of smartphones and mobile app use provides an opportunity to incorporate patient outcomes and make information and survivorship plans more readily available to informal care partners and cancer survivors. Clinical teams, cancer survivors, and informal care partners all responded positively to a variety of features that could improve the efficiency of cancer care coordination and rapidly improve SCP provision. CLINICALTRIAL None.

Precision lung cancer survivorship care: Accrual to the Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 144-144
Author(s):  
Jamie L Studts ◽  
Keyword(s):  
Lung Cancer ◽  
Cancer Survivors ◽  
Cancer Survivorship ◽  
Cancer Care ◽  
Symptom Burden ◽  
Care Program ◽  
Electronic Record ◽  
Baseline Survey ◽  
Survivorship Care ◽  
Cancer Care Facilities

144 Background: Recent innovations in lung cancer care create an urgent need to generate survivorship care interventions that target lung cancer survivors and tailor content and services to this unique community. In addition to suffering significant distress and symptom burden, individuals diagnosed with lung cancer suffer the additional burden of stigma and bias and may not receive optimal social support. The Kentucky LEADS Collaborative Lung Cancer Survivorship Care Program adopts a precision survivorship approach by combining shared decision making and motivational interviewing to address specific threats to quality of life experienced by an individual facing lung cancer. Methods: A single-arm trial was conducted at nine cancer care facilities across Kentucky to assess intervention feasibility, acceptability, and preliminary efficacy. Eligible participants included individuals diagnosed with lung cancer who did not evince acute psychiatric or substance abuse issues. Upon consent, participants completed a baseline survey (T1) and medical data was extracted from the electronic record. Participants also completed the survey following intervention completion (T2) and six months post-baseline (T3). Analyses evaluate accrual and completion rates as well as participant demographics. Results: Over an approximately 12-month accrual period, nine sites accrued 142 participants. Three sites exceeded the accrual goal of 20. Of the participants accrued, 138 (97%) completed T1, 84 (58%) completed T2, 74 (52%) completed T3, and 70 (49%) provided complete data. The majority of participants were female (64%), the mean age was 63.4 (9.3) years, and nearly all participants were white/non-Hispanic (96%). Most participants had a high school degree or less (52%), described household incomes of $35K or less, but nearly all reported carrying health insurance (98%). Conclusions: The Kentucky LEADS program offers an intriguing approach to engaging lung cancer survivors by incorporating precision care strategies that may circumvent some of the more common challenges to reaching individuals diagnosed with lung cancer. Clinical trial information: NCT02989974.

scholarly journals Reducing Cancer Care Partner Burden: A User-Centered Design Approach for an mHealth App (Preprint)

2020 ◽  
Author(s):  
Ingrid Oakley-Girvan ◽  
Sharon Watkins Davis ◽  
Allison Kurian ◽  
Lisa G. Rosas ◽  
Jena Daniels ◽  
...  
Keyword(s):  
Cancer Patients ◽  
Informal Care ◽  
Cancer Care ◽  
Mobile App ◽  
Design Approach ◽  
Smartphone App ◽  
User Centered Design ◽  
Structured Interviews ◽  
Care Partners ◽  
User Centered

BACKGROUND Informal care partners are essential partners in the delivery of complex cancer care services at home, and about 25% of those caring for cancer patients spend more than 40 hours a week providing services. Care partners frequently suffer psychological, behavioral, and physiological effects that can not only affect the patients’ mental and physical health, but also impair the care partners’ health. OBJECTIVE In this paper, we describe a user-centered design approach to build an mHealth smartphone app to provide support and resources to informal care partners while enabling them to remotely monitor the cancer survivor’s health for unanticipated adverse events, thereby reducing burden for clinical staff. METHODS An iterative information gathering process was conducted that included a) potential customer discussions with 138 people to assess health care value propositions and corresponding benefit modules; b) semi-structured interviews with clinicians (N=3), cancer patients (N=3) and care partners (N=3) to identify needs and interests, and; c) a 28-day beta iOS user testing with feasibility and acceptability feedback from 7 care partners in two geographically different academic cancer centers (Duke and Stanford). This study was registered on clinicaltrials.gov (NCT04018677). RESULTS The interviews conducted prior to developing the mHealth app prototype identified areas of consistency in responses between different stakeholder groups in terms of how the mobile app should work, as well as areas of difference. The beta test of the prototype indicated satisfaction with the app’s usability. Care partners preferred to focus primarily on the patient’s health and not their own, and regular surveys on the patient’s symptoms helped educate care partners and reduce their anxiety. CONCLUSIONS This study describes the user-centered design process and demonstrates the feasibility and acceptability of TOGETHERCareTM, an iOS smartphone app for informal cancer care partners. Larger studies, in various oncology populations, are needed to establish the efficacy of the app in reducing care partner burden and to facilitate critical remote monitoring CLINICALTRIAL

Cancer Survivorship Care in Colombia: Review and Implications for Health Policy

2021 ◽  
pp. 154041532110015
Author(s):  
Oscar Yesid Franco-Rocha ◽  
Gloria Mabel Carillo-Gonzalez ◽  
Alexandra Garcia ◽  
Ashley Henneghan
Keyword(s):  
Health Care ◽  
Health Policy ◽  
Cancer Survivors ◽  
Cancer Survivorship ◽  
Policy Development ◽  
Care Delivery ◽  
Developed Countries ◽  
The United States ◽  
Survivorship Care ◽  
Cancer Symptoms

Introduction: The number of cancer survivors is increasing in Colombia, and health policy changes are necessary to meet their unmet needs and improve their health outcomes. Similar trends have been identified in developed countries, and positive changes have been made. Methods: We conducted a narrative review to provide an overview of Colombia’s social structure, health care system, and health care delivery in relation to cancer, with recommendations for improving cancer survivorship in Colombia based on the model of survivorship care in the United States. Results: We proposed general recommendations for improving cancer survivors’ care including (1) recognizing cancer survivorship as a distinct phase of cancer, (2) strengthening methods and metrics for tracking cancer survivorship, (3) assessing and monitoring cancer symptoms and quality of life of cancer survivors, (4) publishing evidence-based guidelines considering the social, economic, and cultural characteristics of Colombian population and cancer survivors’ specific needs. Conclusion: These recommendations could be used to inform and prioritize health policy development in Colombia related to cancer survivorship outcomes.

Abstract 2552: Adapting a novel cancer care delivery model: identifying barriers unique to care coordination for LGBTQ cancer survivors

2021 ◽  
Author(s):  
Nicolas Francone ◽  
Jonathan Alhalel ◽  
Will Dunne ◽  
Sankirtana Danner ◽  
Nihmotallahi Adebayo ◽  
...  
Keyword(s):  
Cancer Survivors ◽  
Care Coordination ◽  
Cancer Care ◽  
Care Delivery ◽  
Delivery Model ◽  
Care Delivery Model

Growing a cancer survivorship care plan program.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 58-58
Author(s):  
Claire Michelle Sutherby (Bennett)
Keyword(s):  
Cancer Survivors ◽  
Cancer Survivorship ◽  
The United States ◽  
Primary Treatment ◽  
Care Plan ◽  
Survivorship Care Plan ◽  
Close Monitoring ◽  
Survivorship Care ◽  
Oncology Nurse ◽  
Nurse Navigator

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.

A centralized, primary care medical home survivorship model at the GW Cancer Center.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 45-45
Author(s):  
Elizabeth Hatcher ◽  
Farzana L. Walcott ◽  
Cam Ha ◽  
April Barbour
Keyword(s):  
Primary Care ◽  
Physical Therapy ◽  
Cancer Survivors ◽  
Weight Management ◽  
Care Coordination ◽  
Medical Home ◽  
Survivorship Care Plan ◽  
Survivorship Care ◽  
The Impact ◽  
Primary Care Medical Home

45 Background: Models for survivorship care are often oncology-based. George Washington (GW) Adult Cancer Survivorship Clinic (ACS) has developed a unique, centralized model for survivorship care delivery staffed by internal medicine providers. The objective is to provide care to survivors that encompass the broad array of chronic issues they face, in addition to guidance on cancer surveillance and prevention. Methods: We implemented a centralized, primary care, consultative model of survivorship care, emphasizing care coordination. A personalized, evidence based survivorship care plan (SCP) is provided to each patient. Patients with complex needs may be seen for follow-up. A copy of the SCP is sent to the patient’s primary care provider (PCP). Referrals are made to our network of specialists within the GW system including: cardiology, neurology, weight management, genetic counseling, dermatology, physical therapy, integrative medicine, psycho-oncology, sexual health, and oncofertility. Referrals are tracked to specialty services using the electronic medical record (EMR). Results: Based on preliminary data, from January 2016 to October 2017, 261 cancer survivors were seen in the survivorship clinic. The majority were breast cancer survivors (166). Referral records were available for 225 patients. Most common were dermatology for baseline skin cancer screening (28%), physical therapy (16%), social work and psycho-oncology (15%), and weight management (15%). Conclusions: Our clinic is based on a primary care medical home model for each survivor, which includes care coordination and referral to specialty services. Limitations include inconsistent referral tracking methods with our EMR and incomplete data for all survivorship patients. Future research plans include assessing the impact of referrals on patient-reported outcomes and morbidity.

scholarly journals Cancer as a Chronic Illness in Colombia: A Normative Consensus Approach to Improving Healthcare Services for those Living with and beyond Cancer and Its Treatment

Healthcare ◽  
2021 ◽  
Vol 9 (12) ◽  
pp. 1655
Author(s):  
Cindy V. Mendieta ◽  
Maria Elizabeth Gómez-Neva ◽  
Laura Victoria Rivera-Amézquita ◽  
Esther de Vries ◽  
Martha Lucía Arévalo-Reyez ◽  
...  
Keyword(s):  
Cancer Survivorship ◽  
Cancer Care ◽  
Cancer Survival ◽  
Psychosocial Support ◽  
Cancer Recurrence ◽  
Healthcare Services ◽  
Survivorship Care ◽  
Consensus Approach ◽  
Care Needs ◽  
Normative Consensus

Cancer survivorship care in Colombia is of increasing importance. International survivorship initiatives and studies show that continuing symptoms, psychological distress, and late effects impact the quality of life for survivors. Priorities for quality survivorship according to Colombian patients and clinicians are unknown. We undertook a nominal consensus approach with 24 participants using virtual meeting technology to identify the priorities for cancer survivorship. We applied an iterative approach conducted over eight weeks with five workshops and one patient focus group followed by a priority setting survey. The consensus group established six main themes, which were subsequently evaluated by experts: (i) symptoms and secondary effects of cancer; (ii) care coordination to increase patient access and integration of cancer care; (iii) psychosocial support after cancer treatment; (iv) mapping information resources and available support services for long-term cancer care; (v) identifying socioeconomic and regional inequalities in cancer survival to improve care and outcomes; and (vi) health promotion and encouraging lifestyle change. The order of priorities differed between clinicians and patients: patients mentioned psychosocial support as the number one priority, and clinicians prioritized symptoms and surveillance for cancer recurrence. Developing survivorship care needs consideration of both views, including barriers such as access to services and socioeconomic disparities.

scholarly journals Identifying Determinants of Intervention Sustainability in Cancer Survivorship Care

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 95s-95s
Author(s):  
R. Urquhart ◽  
C. Kendell ◽  
E. Cornelissen ◽  
L.L. Madden ◽  
B.J. Powell ◽  
...  
Keyword(s):  
Cancer Survivorship ◽  
Cancer Care ◽  
Scientific Evidence ◽  
Evidence Base ◽  
World Health ◽  
Evidence Based ◽  
Theory Approach ◽  
Survivorship Care ◽  
Sustained Use ◽  
Health Organization

Background: Substantial gains could be made in reducing the cancer burden if current scientific evidence was applied in practice. The World Health Organization estimates that, worldwide, one-third of cancer cases could be prevented and another one-third cured if evidence was consistently implemented and sustained in cancer care. However, moving evidence-based interventions into care has proven a significant challenge. Even when interventions are put into practice, they often fail to become integrated into the long-term routines of organizations. This poor sustainability means many patients do not benefit from the best care possible. There is little empirical data on the factors that influence the sustainability of interventions in clinical settings. Aim: To identify the determinants of, and explore the processes that facilitate, sustainability of interventions in cancer care survivorship. Sustainability was defined as the continued use of an intervention and its associated components and/or the continued achievement of the intended benefits after the initial funding or support period. Methods: We first conducted an environmental scan to identify interventions in cancer survivorship care implemented in Canada. This was followed by a literature review to ascertain the evidence base for each intervention and identify those meeting the US National Cancer Institute's criteria for evidence-based interventions. We then recruited key individuals relevant to the evidence-based interventions for semistructured in-depth interviews to explore issues related to their sustainability. Interview data are being analyzed through an inductive grounded theory approach using constant comparative analysis. Results: Twenty-seven individuals participated in the interviews. Preliminary findings reveal five factors that influenced whether, and the extent to which, interventions were sustained in cancer survivorship care. Participants emphasized (1) access to sufficient resources and funding is critical to sustaining interventions after the initial funding period. The ability of a team or organization to (2) evaluate a new intervention and demonstrate its quality and usefulness was often perceived as necessary to obtain continued funding as well as ongoing buy in and support from key stakeholders. In addition, the (3) extent to which the intervention can be adapted, (4) support of senior management, and (5) existence of an on-the-ground champion to continuously promote, adapt, lead, and spread the intervention were perceived as important factors that contribute to an intervention's sustained use. Conclusion: Research into determinants and processes of sustainability is critical to ensure we plan and act in ways that maximize the sustained use of interventions shown to benefit patients and our cancer systems. Issues related to evaluation, adaptability, and ongoing moral and material supports should be considered before, during, and after implementation efforts.

scholarly journals Current practice patterns and gaps in guideline-concordant breast cancer survivorship care

2021 ◽  
Author(s):  
Eden R. Brauer ◽  
Elisa F. Long ◽  
Laura Petersen ◽  
Patricia A. Ganz
Keyword(s):  
Breast Cancer ◽  
Cancer Survivors ◽  
Cancer Survivorship ◽  
Late Effects ◽  
Breast Cancer Survivors ◽  
Practice Patterns ◽  
Survivorship Care ◽  
Care Guidelines ◽  
Composite Scores

Abstract Purpose Breast cancer-specific survivorship care guidelines for the more than 3.8 million survivors in the U.S. are available, but implementation in clinical practice remains challenging. We examined current practice patterns and factors associated with guideline-concordant survivorship care among oncologists. Methods A national sample of medical oncologists, recruited using two databases, participated in a survey focused on practice patterns for breast cancer survivorship care. A “survivorship care composite score” was calculated for each respondent based on provision of services recommended in the survivorship guidelines. Descriptive statistics and multivariable linear regression analyses examined associations between physician and practice characteristics and composite scores. Results The survey was completed by 217 medical oncologists, with an overall response rate of 17.9% and eligibility rate of 56.9% for those who responded. Oncologists reported high engagement in evaluation of disease recurrence (78%). Performed less frequently were the provision of survivorship care plans (46%), assessment of psychosocial long-term and late effects (34%), and screening for subsequent cancers (34%). Lack of survivorship care training (p = 0.038) and not routinely informing patients about potential late effects (p = 0.003) were significantly associated with poorer survivorship care composite scores. Conclusions Despite the availability of disease-specific survivorship care guidelines, adherence to their recommendations in clinical practice is suboptimal. Survey results identified key gaps in survivorship care for breast cancer survivors, particularly related to subsequent primary cancers and psychosocial long-term and late effects. Implications for Cancer Survivors Improving the delivery of comprehensive survivorship care for the growing population of breast cancer survivors is a high priority. Disease-specific clinical guidelines for cancer survivorship provide valuable recommendations, but innovative strategies are needed to integrate them into the care of long-term breast cancer survivors.

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