Quality Survivorship Care Research Articles

Advanced practice providers and survivorship care plans.

70 Background: The American College of Surgeons mandate in 2012 challenged organizations to create and develop quality survivorship care programs. The NCCN and Commission on Cancer set the standard for quality psychosocial care recognizing distress as part of the cancer continuum. In order to meet this challenge, community cancer care organizations are incorporating delivery of survivorship and psychosocial care into the Advanced Practice Provider (APP) role. APPs include Physician Assistants (PAs) and Advanced Practice Nurses (APNs). We describe the development and feasibility testing of an APP-led survivorship program in a large network of community oncology practices. Methods: A descriptive study design was used with ten practices participating in the implementation of a structured APP-led survivorship program. The goals of each survivorship visit were to: review recommendations for care and healthy lifestyle behaviors, review surveillance recommendations, and to reconnect patients with their primary care providers. Nineteen APPs in the study site practices offered survivorship management between October 2012 and May 2015 to female breast and colon cancers at all stages. Results: Study sites used structured process maps to identify and refer patients to survivorship visits. Evaluations of additional referral strategies are ongoing. Participating APPs reported high self-efficacy in delivering survivorship care plans and high patient satisfaction following visits. All female breast or colon cancer patients, regardless of stage at diagnosis, attended the appointment and received a complete care plan based upon the ASCO Survivorship Care Plan. Surveillance education was provided specific to diagnosis utilizing the NCCN guidelines delivering person-centered care. Visits lasted an average of 60 minutes and were billable as counseling and coordination. Conclusions: Patients diagnosed with breast or colon cancer make up the largest majority of cancer survivors. This project reveals that an APP-led survivorship program is feasible and can help to meet the ASCO and NCCN challenge of providing survivorship care to this large population.

Clinical tools to enhance survivorship cancer.

245 Background: Clear patient-centered recommendations for follow-up and health maintenance is a primary goal of ASCO’s model for survivorship and palliative care. The Commission on Cancer also sought to improve the quality of survivorship care by requiring accredited programs to implement survivorship care plans (SCPs) and treatment summaries by 2015. Our aim is to describe the SCP's components and metrics collected in 12 survivorship clinics of an academic cancer center. Methods: A multidisciplinary team was convened to develop clinical practice tools to guide providers on transitioning patients to a survivorship clinic. These tools were based on 4 IOM's domains: surveillance, risk reduction, late effects management, and emotional function.Algorithms are supported with a Passport Plan for Health (Passport) specifically designed for each disease. These clinical tools allowed clinicians to provide recommendations for each survivor. Tools were electronically available to survivors and their primary care providers. Descriptive statistics were used to summarize metrics in this analysis. Results: To date, 44 cancer-site specific algorithms and 19 Passports have been launched and used by clinicians in 12 survivorship clinics.Metrics collected are: a) number of Passports completed, b) providers’ completion of SCPs, and c) dates with counseling recommendations outlined in the treatment pathways. Since FY08, 25,912 Passports were distributed to 13,105 survivors. In FY14, 6,160 Passports were issued (80.7% provider completion rate). Passport completion varied by provider (7%-97%). Survivors were counseled for recommendations related to colonoscopy (97% of the time), skin screening (98%), mammogram (97%), gynecological screening (95%), and prostate screening (74%). Conclusions: Algorithms and SCPs serve as clinical tools to help providers and survivors manage physical and emotional issues. These tools increase standardization in the delivery of survivorship care, safety, quality, and promote communication among survivors and providers across clinical settings.

Cancer survivors’ receipt of treatment summaries and implications for patient-centered communication and quality of care

ObjectiveThe Institute of Medicine recommends cancer survivors completing treatment be provided with a treatment summary to facilitate delivery of patient-centered survivorship care. However, the relationship between treatment summary receipt and patient-centered communication (PCC) and overall quality of care (QOC) are not well understood. MethodsCancer survivors responding to the Health Information National Trends Survey reported treatment summary receipt, QOC, and experiences of six core functions of PCC. Multivariable logistic regression assessed the relationship between treatment summary receipt and PCC. The prevalence of survivors’ treatment summary receipt and demographic/clinical characteristics predictive of treatment summary receipt were also assessed. ResultsOf 359 respondents with a cancer history, 34.5% reported receiving a treatment summary. Greater treatment burden was associated with increased treatment summary receipt. Treatment summary receipt was associated with higher QOC and more PCC, both overall and for five of the six PCC functions. ConclusionThe receipt of cancer treatment summaries may improve PCC and QOC for survivors. Practice implicationsThe positive relationship between treatment summary receipt and survivors’ PCC experience substantiates continued efforts to provide treatment summaries to survivors transitioning from active treatment to survivorship care. Future research should characterize mechanisms by which treatment summary provision may enhance PCC.

Prostate cancer: Optimizing prostate cancer survivorship care.

Prostate cancer survivors face a myriad of unique physical, psychological and emotional challenges during the often lengthy survivorship experience. Efforts to better characterize the unmet needs of this large patient population will undoubtedly improve the quality of survivorship care we offer to our patients.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses.

Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n = 136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified: the first relating to the challenges nurses face in providing care ('care challenges') and the second relating to the challenges of providing survivorship care within contemporary health care systems ('system challenges'). Cancer nurses perceive the nature of haematological cancer and its treatment and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Addressing the issues identified will facilitate cancer nurses' provision of survivorship care and help address haematological survivors' needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Assuring Quality Cancer Survivorship Care: We've Only Just Begun.

Clinical practice guidelines, quality metrics, and performance improvement projects are the key tools of the national movement to improve and assure quality cancer care. Each of these evaluation instruments is intended to assess quality from a unique perspective, including that of the individual provider, the practice/hospital, and the health care system. A number of organizations have developed or endorsed quality measures specific to cancer, however, these have not formally included survivorship measures. Fortunately, the American Society of Clinical Oncology (ASCO), the National Comprehensive Cancer Network, the American Cancer Society, and the American College of Surgeons (ACoS) have taken a leadership role in developing survivorship guidelines and quality metrics. Both ASCO and ACoS have focused their efforts on the treatment summary and care plan, a document that was proposed in the 2006 Institute of Medicine report on cancer survivorship. ASCO has proposed a care plan template for implementation and incorporation into the electronic health records (EHR), which will lend itself to structure, process, and outcome measurement. ACoS, conversely, has included the care plan in its cancer program standards with annual evaluation metrics. In addition, ASCO has developed a number of key survivorship-relevant metrics as part of its Quality Oncology Practice Initiative (QOPI), a tool developed to measure quality cancer care and assess adherence to guidelines across academic and community practices. Together, these efforts will direct us to more effective ways to disseminate guideline recommendations and to better methods of assessing quality survivorship care nationally.

Provision of survivorship care for patients with haematological malignancy at completion of treatment: A cancer nursing practice survey study

PurposeMany haematological cancer survivors report long-term physiological and psychosocial effects, which persist far beyond treatment completion. Cancer services have been required to extend care to the post-treatment phase to implement survivorship care strategies into routine practice. As key members of the multidisciplinary team, cancer nurses' perspectives are essential to inform future developments in survivorship care provision. MethodsThis is a pilot survey study, involving 119 nurses caring for patients with haematological malignancy in an Australian tertiary cancer care centre. The participants completed an investigator developed survey designed to assess cancer care nurses' perspectives on their attitudes, confidence levels, and practice in relation to post-treatment survivorship care for patients with a haematological malignancy. ResultsOverall, the majority of participants agreed that all of the survivorship interventions included in the survey should be within the scope of the nursing role. Nurses reported being least confident in discussing fertility and employment/financial issues with patients and conducting psychosocial distress screening. The interventions performed least often included, discussing fertility, intimacy and sexuality issues and communicating survivorship care with the patient's primary health care providers. Nurses identified lack of time, limited educational resources, lack of dedicated end-of-treatment consultation and insufficient skills/knowledge as the key barriers to survivorship care provision. ConclusionCancer centres should implement an appropriate model of survivorship care and provide improved training and educational resources for nurses to enable them to deliver quality survivorship care and meet the needs of haematological cancer survivors.

Abstract CN03-03: Cancer survivorship and health equity research: Lessons learned from pediatric, adolescent, and young adult survivors

Abstract Pediatric, adolescent and young adult survivors of childhood cancer are at risk for premature morbidity and mortality due to their cancer treatment at a young age. They require lifetime follow-up care for targeted surveillance for late effects detection and risk-reduction counseling. Yet, disparities in the receipt of and access to high quality survivorship care can exist. In this session, we will describe outcomes by race/ethnicity in adult survivors of pediatric cancer. We will also characterize risks for disparities in the young adult childhood cancer survivor population. New research paradigms designed to outreach to minority childhood cancer survivors aimed at improving access to risk-based survivorship care will be described Citation Format: Jacqueline Casillas. Cancer survivorship and health equity research: Lessons learned from pediatric, adolescent, and young adult survivors. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr CN03-03. doi:10.1158/1538-7755.DISP13-CN03-03

From diagnosis through survivorship: health-care experiences of colorectal cancer survivors with ostomies

The journey from diagnosis through treatment to survivorship can be challenging for colorectal cancer (CRC) survivors with permanent ostomies. Memories of both the positive and negative health-care interactions can persist years after the initial diagnosis and treatment. The purpose of this paper is to describe the health-care experiences of long-term (>5 years) CRC survivors with ostomies. Thirty-three CRC survivors with ostomies who were members of Kaiser Permanente, an integrated care organization, in Oregon, southwestern Washington and northern California participated in eight focus groups. Discussions from the focus groups were recorded, transcribed, and analyzed for potential categories and themes. Health-care-related themes described CRC survivors' experiences with diagnosis, treatment decision-making, initial experiences with ostomy, and survivorship. Participants discussed both positive and negative health-care-related experiences, including the need for continued access to trained nurses for ostomy self-care, access to peer support, and resources related to managing persistent, debilitating symptoms. Long-term CRC survivors with ostomies have both positive and negative health-care experiences, regardless of health-related quality of life (HRQOL) and gender. Long-term support mechanisms and quality survivorship care that CRC survivors with ostomies can access are needed to promote positive adjustments and improved HRQOL. The current literature in CRC survivorship suggests that HRQOL concerns can persist years after treatment completion. The coordination of care to manage persistent late- and long-term effects are still lacking for CRC survivors living with an ostomy. Findings from this qualitative analysis will aid in the development of support strategies that foster more positive adjustments for CRC survivors living with an ostomy and support their ongoing ostomy-related needs.

Abstract P3-08-02: Breast cancer survivors’ outcomes and satisfaction following delivery of a survivorship care plan: Results of a multicenter trial

Abstract Introduction: Survivorship care plans (SCPs) have been suggested as a solution to the fragmentation of care and suboptimal outcomes experienced by the more than 13 million cancer survivors in the US. Provider and patient acceptance of SCPs is generally high, but trials to date have examined outcomes such as cancer-related distress rather than constructs more directly related to the purpose of SCPs, such as improving coordination of care, knowledge about survivorship issues, and perceived usefulness by patients. Moreover, little is known about processes by which SCPs are developed and delivered in practice – who is involved and the level of resources needed for implementation. This pilot study used a quasi-experimental, pre-test/post-test design to examine the process of delivering standardized SCPs and the outcomes achieved by post-treatment breast cancer survivors at seven cancer centers affiliated with the LIVESTRONG™ Survivorship Centers of Excellence Network. Method: Outcomes were assessed prior to SCP delivery and 3 months following and included survivors’ use of and satisfaction with SCPs, perceived knowledge about survivorship care and potential late effects, and survivors’ assessment of the quality and coordination of survivorship care. Process variables included type of provider delivering the SCP and time required to complete and deliver the SCP. Results: 139 breast cancer survivors completed baseline and follow-up measures and received a comprehensive, standardized SCP at a survivorship visit (Age M = 53.9 years, 3.4 years post-diagnosis, 90.6% Caucasian). Satisfaction with the SCP was high, with 90% of participants being at least ‘satisfied’ and 56% being ‘very’ or ‘extremely satisfied’. Perceived knowledge about survivorship care improved following SCP delivery (p < 0.001), as did survivor perception of quality of survivorship care received and coordination among providers (all p < 0.001). A trend toward improvement in satisfaction with the follow-up care provider was also noted (p = 0.11). Most participants (88%) reported reading their SCP carefully following delivery. In the 3 months following delivery, participants reported they most commonly used SCP materials to make decisions about appropriate exercise (69%), which tests to receive and when (65%), and to make dietary changes (65%), but only 23% shared the SCP with their primary care providers during that time frame. With respect to process, providers were predominately NPs and Pas (80%). Although implementation varied, time burden was consistently high (M = 72 minutes to prepare, M = 48 minutes to deliver). Discussion: This is the first known study to demonstrate significant improvements in perceived knowledge regarding and perceived quality of survivorship care following receipt of a comprehensive SCP. Survivors were satisfied with their SCP, and most frequently reported using SCPs in making decisions regarding behavioral changes. Results warrant further consideration in a randomized controlled trial, and approaches that maximize efficiency are needed given the time burden of providers to provide an SCP. SCPs have been recommended for all cancer survivors and these data provide preliminary support for this recommendation. Citation Information: Cancer Res 2013;73(24 Suppl): Abstract nr P3-08-02.

Risk-Based Health Care, the Cancer Survivor, the Oncologist, and the Primary Care Physician

Cancer survivors face substantial risks for morbidity, reduced quality of life, and premature mortality related to the cancer itself and/or the interventions undertaken to control cancer. Risk-based care that involves a personalized systematic plan of periodic screening, surveillance, and prevention relevant to the cancer experience is recommended to address the comprehensive health needs of the growing population of cancer survivors. Risk-based care and coordination between oncology and primary care providers have been identified as important metrics of quality cancer survivorship care. Various models of survivorship care, treatment summaries, and survivorship care plans have been promoted as methods to facilitate communication among providers across care transitions and improve survivor access to quality survivorship care. However, research supporting the feasibility of implementing these practices and their effectiveness in enhancing health outcomes is limited. This article reviews key concepts underpinning clinical and research initiatives endeavoring to improve access to quality care among long-term survivors and summarizes results of intervention studies implementing these elements in transitioning survivors from oncology to primary care providers for long-term follow-up care.

The Survivorship Care Model at MSKCC

The Survivorship Care Model at MSKCC

American Society of Clinical Oncology Statement: Achieving High-Quality Cancer Survivorship Care

American Society of Clinical Oncology Statement: Achieving High-Quality Cancer Survivorship Care

The LIVESTRONG essential elements of survivorship care: Advancing quality survivorship care in clinical care settings.

155 Background: The American College of Surgeons Commission on Cancer (COC) has set a 2015 deadline for oncology practices to comply with new patient-centered standards of care to maintain accreditation. Despite this mandate, there is not a strong evidence base on best practices, or guidance on how to implement quality survivorship care services. In September 2011, the Lance Armstrong Foundation (LAF) and the LIVESTRONG Survivorship Center of Excellence Network (Network) convened researchers, providers, advocates, and cancer survivors who identified and prioritized a list of 20 Essential Elements of survivorship care. LAF and the Network continued work to refine this list with input from stakeholders with the goal of disseminating a framework for survivorship care delivery and advancing a research agenda to strengthen the evidence base for implementing these elements as standard care. Methods: LAF and the Network have refined definitions of the Essential Elements through an iterative process and in late 2012 will facilitate a technology-mediated consensus-building process among a broad group of stakeholders. Results: Refinement of the Essential Elements included defining each element in such detail that “basic” and “enriched” levels of implementation are described to guide providers in real-world settings. This work outlines a research agenda aimed to strengthen the evidence-base of the Essential Elements’ effectiveness in improving survivors’ outcomes. In October 2012, the refined definitions will be disseminated to a broad stakeholder audience and subject to review. Details of this iterative process, resulting definitions, and open-forum feedback will be reported here. Conclusions: Once complete, the Essential Elements will represent a consensus-driven platform that provides the cancer care community with a blueprint for the development and implementation of high-quality survivorship care and research. Additionally, the finalized Essential Elements will further facilitate the broad adoption of the new COC standards including the provision of a treatment summary and survivorship care plans, palliative care, psychosocial distress screening, and care coordination.

The experience of information sharing among primary care clinicians with cancer survivors and their oncologists

Knowledge about information sharing among primary care clinicians, oncologists, and their cancer patients is critical given its importance in facilitating the delivery of quality care to the increasing number of cancer survivors. The purpose of our study was to provide a better understanding of the nature of interactions among primary care clinicians, patients, and oncologists throughout the cancer care continuum to better understand the transition to survivorship. Twenty-one qualitative in-depth interviews were conducted with 11 primary care physicians and 10 nurse practitioners. Themes were identified using content analysis. The following themes emerged from the data including: (1) a visit is worth a thousand written reports--primary care clinicians described the importance of patient visits during cancer treatment; (2) community vs. cancer center oncologists--primary care clinicians described differences in information sharing with community oncologists as compared with those in academic centers; (3) correcting for information deficits--primary care clinicians, unable to obtain regular progress reports directly from oncologists, developed indirect strategies to obtain information; (4) the deficiencies in post-treatment follow-up care plans; and (5) the panacea of electronic medical records and survivor care plans. The themes that emerged from this work describe in detail the absence of systematic information sharing among primary care clinicians, patients, and oncologists that is needed to support quality survivorship care in the primary care setting. The descriptions by primary care clinicians contribute to a deeper understanding of the daily challenges that both interfere and/or support primary care clinicians in their care of survivors of cancer. Managing the complex care of cancer survivors often requires the expertise of a number of skilled providers. Information sharing among these individuals is one of the most fundamental aspects of ensuring effective transitions in care. Our results indicate that systematic information sharing among providers caring for cancer survivors is lacking. Identifying strategies to enhance information sharing among and between providers is essential to facilitating the delivery of high-quality survivor care.

Trends in follow-up and preventive care for colorectal cancer survivors.

As cancer patients transition from treatment to survivorship, the responsibility of primary care providers (PCPs) versus oncology specialists is unclear. To explore (1) physician types (PCPs versus oncology specialists) survivors visit during survivorship year 1, (2) preventive care received, (3) how preventive care receipt relates to physician types visited, and (4) trends in physician types visited and preventive care received over time. Retrospective cross-sectional study of 5 cohorts of cancer survivors in survivorship year 1. Twenty thousand sixty-eight survivors diagnosed with stage 1-3 colorectal cancer between 1997 and 2001. Using the SEER-Medicare database, we assessed the mean number of visits to different physician types, the percentage of survivors receiving preventive services, how receipt of preventive services related to physician types visited, and trends over time in physician visits and preventive care. There was a trend over time of increased visits to all physician types, which was statistically significant for oncology specialists and other physicians (p < .001) but not PCPs. The percentage of survivors receiving preventive services remained relatively stable across the 5 cohorts, except for an increase in bone densitometry (p < .05). Survivors who visited both a PCP and oncology specialist were most likely to receive each preventive care service (p < .05). Oncology specialist follow-up in survivorship year 1 is intensifying over time. Survivors not being followed-up by both PCPs and oncology specialists were less likely to receive preventive care. Clarifying the roles of PCPs and oncology specialists during follow-up can improve the quality of care for survivors.