Developing innovative models of care for cancer survivors: use of implementation science to guide evaluation of appropriateness and feasibility.

PURPOSE: Limited understanding of factors affecting uptake and outcomes of different cancer survivorship care models hampers implementation of best practices. We conducted a formative evaluation of stakeholder-perceived acceptability and feasibility of an embedded primary care provider (PCP) survivorship care model. METHODS: We identified clinical, operational, and patient stakeholders within Kaiser Permanente Southern California and conducted semi-structured interviews. Analyses were guided by the Consolidated Framework for Implementation Research (CFIR), an integrated framework from the field of implementation science. Deductive thematic categories were derived a priori from CFIR domains; thematic sub-categories were developed inductively. RESULTS: We interviewed 12 stakeholders; multiple themes were identified. Acceptability: oncologists and operational leaders perceived that the model was an acceptable solution to issues of capacity and efficiency with the potential to improve quality; however, several oncologists perceived negative consequences including "[loss of] the joy of medicine." Patients were less enthusiastic, fearing the introduction of "[someone] who doesn't know me." Feasibility: confidence was high that this model can succeed, although there was concern about finding the right PCP and investment in training and staff support. Culture/climate: numerous system-level facilitators were identified, including encouragement of innovation and familiarity with developing new models. CONCLUSIONS: Formative evaluation is a critical pre-implementation process. Acceptability and feasibility for this model were high among oncologists and operational leaders but patients were ambivalent. Keys to successful implementation include training and support of engaged PCPs and a patient transition plan introduced early in the care trajectory.

Understanding Comorbidity Profiles and Their Effect on Treatment and Survival in Patients With Colorectal Cancer.

Background: Patients with colorectal cancer (CRC) commonly present at an older age with multiple comorbid conditions and complex care needs at the time of diagnosis. Clusters of comorbid conditions, or profiles, have not been systematically identified in this patient population. This study aimed to identify clinically distinct comorbidity profiles in a large sample of patients with CRC from an integrated healthcare system, and to examine the effect of comorbidity profiles on treatment and survival. Methods: In this retrospective cohort study, we used latent class analysis (LCA) to identify comorbidity profiles in a sample of 7,803 patients with CRC diagnosed between 2008 and 2013. We identified treatment received from electronic health records and used Cox proportional hazards analysis to examine the effect of comorbidity class on survival. We also examined the effect of comorbidity profile on receipt of guideline-recommended treatment. Results: Median age at diagnosis was 66 years, 52% of patients were male, and 48% were nonwhite. A plurality had stage 0-I disease (42%), with 22% stage II, 22% stage III, and 14% stage IV. More than half (59%) had ≤1 comorbid condition, whereas 19% had ≥4 comorbidities. LCA identified 4 distinct comorbidity classes. Classes were distinguished by the presence or absence of vascular and/or respiratory disease and diabetes with complications, as well as progressively greater Charlson comorbidity index scores. Comorbidity class was independently associated with treatment selection (P<.001) and survival (P<.001). Conclusions: Patients with CRC can be described by 4 distinct comorbidity profiles that are independent predictors of treatment and survival. These results provide insight into how comorbidities cluster within patients with CRC. This work represents a shift away from simple counting of comorbid conditions and toward a more nuanced understanding of how comorbidities cluster within groups of patients with CRC.

Integrating qualitative research methods into care improvement efforts within a learning health system: addressing antibiotic overuse.

BACKGROUND: Despite reports advocating for integration of research into healthcare delivery, scant literature exists describing how this can be accomplished. Examples highlighting application of qualitative research methods embedded into a healthcare system are particularly needed. This article describes the process and value of embedding qualitative research as the second phase of an explanatory, sequential, mixed methods study to improve antibiotic stewardship for acute sinusitis. METHODS: Purposive sampling of providers for in-depth interviews improved understanding of unwarranted antibiotic prescribing and elicited stakeholder recommendations for improvement. Qualitative data collection, transcription and constant comparative analyses occurred iteratively. RESULTS: Emerging themes and sub-themes identified primary drivers of unwarranted antibiotic prescribing patterns and recommendations for improving practice. These findings informed the design of a health system intervention to improve antibiotic stewardship for acute sinusitis. Core components of the intervention are also described. CONCLUSION: Qualitative research can be effectively applied in learning healthcare systems to elucidate quantitative results and inform improvement efforts.

Perceived positive impact of cancer among long-term survivors of childhood cancer: a report from the childhood cancer survivor study.

OBJECTIVE: Investigations examining psychosocial adjustment among childhood cancer survivors have focused primarily on negative effects and psychopathology. Emergent literature suggests the existence of positive impact or adjustment experienced after cancer, as well. The purpose of this study is to examine the distribution of Perceived Positive Impact (PPI) and its correlates in young adult survivors of childhood cancer. METHODS: 6425 survivors and 360 siblings completed a comprehensive health survey, inclusive of a modified version of the Post-traumatic Growth Inventory (PTGI) as a measure of PPI. Linear regression models were used to examine demographic, disease and treatment characteristics associated with PPI. RESULTS: Survivors were significantly more likely than siblings to report PPI. Endorsement of PPI was significantly greater among female and non-white survivors, and among survivors exposed to at least one intense therapy, a second malignancy or cancer recurrence. Survivors diagnosed at older ages and fewer years since diagnosis were more likely to report PPI. Income, education and marital/relationship status appeared to have varied relationships to PPI depending upon the subscale being evaluated. CONCLUSIONS: The existence and variability of PPI in survivors in this study suggest that individual characteristics, inclusive of race, gender, cancer type, intensity of treatment, age at diagnosis and time since diagnosis, have unique and specific associations with different aspects of perceived positive outcomes of childhood cancer.

Now what? Toward an integrated research and practice agenda in distress screening.

Significant gains have been made in the detection and treatment of cancer, contributing to increased survival, but a cancer diagnosis and treatment may be accompanied by physical and psychosocial after-effects. Distress screening has been championed as a mechanism to identify patients with high levels of psychosocial morbidity for subsequent assessment and psychosocial care delivery. However, implementation of distress screening has been variable, in scope and in the consistency and quality of metrics and methods used. This capstone article identifies challenges in the measurement and implementation of distress screening and examines future opportunities for research and implementation.

"You're too young for this": adolescent and young adults' perspectives on cancer survivorship.

Adolescent and young adult cancer survivors face unique challenges not systematically addressed by cancer clinicians. Four focus groups and two individual interviews were conducted with 19 survivors to profile experiences and identify key concerns for future interventions. The resultant themes reflect cancer care continuum challenges (such as delays in diagnosis, problems with adherence), psychosocial concerns (such as infertility and reproductive concerns, changing social relationships, financial burden), and the paradox of being diagnosed with cancer as a young adult. Future intervention development for adolescent and young adult survivors should involve patient voices at each stage of the research process.

What do 1281 distress screeners tell us about cancer patients in a community cancer center?

OBJECTIVE: The 2008 Institute of Medicine's Report, Cancer Care for the Whole Patient (IOM, 2008), recommends screening cancer patients for distress. Cancer programs throughout the United States are struggling to achieve this standard. The IOM report indicates that only 14% of 1000 randomly selected American Society of Clinical Oncology (ASCO) members and eight of 15 National Comprehensive Cancer Network (NCCN) centers reported screening for distress in at least some of their patients [J Natl Compr Cancer Netw 2007;5:99-103]. Without adequate screening, distress often goes unnoticed by cancer professionals and there is little information about the prevalence of distress. The main objective of this article is to present data from 1281 distress screenings completed by patients treated within a community cancer center. Specifically, this article reports the intensity of distress, frequency of problem endorsement, and requests for specific psychosocial providers by cancer patients. METHOD: Medical and radiation oncology patients completed a distress screener before their first physician appointment. The screening instrument included the Distress Thermometer, a symptom checklist, and a list of psychosocial providers that the patient could request to meet. RESULTS: Thirty-two percent of this sample rated distress above the threshold level. Worry was the most common problem endorsed followed by financial issues. Emotional concerns were endorsed by 59% of the sample. The cancer dietitian was the psychosocial professional most frequently requested by patients. CONCLUSION: Distress screening can be accomplished within a community cancer center but the provision of psychosocial services is difficult given the high volume of need.

Working without a net: leukemia and lymphoma survivors' perspectives on care delivery at end-of-treatment and beyond.

This study explored survivors' perspectives on care delivery and supportive care needs during reentry. Fifty-one individual interviews were conducted with adult leukemia and lymphoma survivors, 3 to 48 months from treatment cessation. Survivors reported poor continuity of care across the patient-survivor transition, difficulty finding appropriate information/services, lack of preparation, lack of support for survivorship issues, and inadequate or poorly timed follow-up as factors contributing to adjustment difficulties at end of treatment and beyond. Improved care coordination is needed after active treatment, including use of an exit interview and delivery of services that are more congruent and better timed to meet ongoing and emergent survivorship needs.

Further application of the care transitions intervention: results of a randomized controlled trial conducted in a fee-for-service setting.

The study objective was to test whether a self-care model for transitional care that has been demonstrated to improve outcomes in Medicare Advantage populations--The Care Transitions Intervention--could also improve outcomes in a Medicare fee-for-service population. Intervention patients were less likely to be readmitted to a hospital in general and for the same condition that prompted their index hospitalization at 30, 90, and 180 days versus control patients. Coaching chronically ill older patients and their caregivers to ensure that their needs are met during care transitions may reduce the rate of subsequent rehospitalization in a Medicare fee-for-service population.

The care transitions intervention: results of a randomized controlled trial.

BACKGROUND: Patients with complex care needs who require care across different health care settings are vulnerable to experiencing serious quality problems. A care transitions intervention designed to encourage patients and their caregivers to assert a more active role during care transitions may reduce rehospitalization rates. METHODS: Randomized controlled trial. Between September 1, 2002, and August 31, 2003, patients were identified at the time of hospitalization and were randomized to receive the intervention or usual care. The setting was a large integrated delivery system located in Colorado. Subjects (N = 750) included community-dwelling adults 65 years or older admitted to the study hospital with 1 of 11 selected conditions. Intervention patients received (1) tools to promote cross-site communication, (2) encouragement to take a more active role in their care and to assert their preferences, and (3) continuity across settings and guidance from a "transition coach." Rates of rehospitalization were measured at 30, 90, and 180 days. RESULTS: Intervention patients had lower rehospitalization rates at 30 days (8.3 vs 11.9, P = .048) and at 90 days (16.7 vs 22.5, P = .04) than control subjects. Intervention patients had lower rehospitalization rates for the same condition that precipitated the index hospitalization at 90 days (5.3 vs 9.8, P = .04) and at 180 days (8.6 vs 13.9, P = .046) than controls. The mean hospital costs were lower for intervention patients ($2058) vs controls ($2546) at 180 days (log-transformed P = .049). CONCLUSION: Coaching chronically ill older patients and their caregivers to ensure that their needs are met during care transitions may reduce the rates of subsequent rehospitalization.

Thematic evidence of psychosocial thriving in childhood cancer survivors.

Advances in medical treatment for childhood cancer have resulted in dramatically increased survival rates and a growing population of long-term survivors. Until recently, researchers reported primarily negative psychosocial sequelae of childhood cancer. Emergent conceptual frameworks propose that the assumption of pathology or long-term deficits in functioning might obscure an understanding of the full range of outcomes. Using qualitative interview data (N = 50), the authors explore how cancer can lead to positive psychosocial outcomes, including thriving. The findings suggest that processes of coping, meaning making, and psychospiritual growth are intimately related to long-term psychosocial well-being. The results suggest that in the aftermath of a trauma such as childhood cancer, many outcomes are possible, including thriving.

It takes a (virtual) village: crowdsourcing measurement consensus to advance survivorship care planning.

We report results from the use of an innovative tool (the Grid-Enabled Measures (GEM) database) to drive consensus on the use of measures evaluating the efficacy and implementation of survivorship care plans. The goal of this initiative was to increase the use of publicly available shared measures to enable comparability across studies. Between February and August 2012, research and practice communities populated the GEM platform with constructs and measures relevant to survivorship care planning, rated the measures, and provided qualitative feedback on the quality of the measures. Fifty-one constructs and 124 measures were entered into the GEM-Care Planning workspace by participants. The greatest number of measures appeared in the domains of Health and Psychosocial Outcomes, Health Behaviors, and Coordination of Care/Transitional Care. Using technology-mediated social participation, GEM presents a novel approach to how we measure and improve the quality of survivorship care.

Preparing patients and caregivers to participate in care delivered across settings: the Care Transitions Intervention.

OBJECTIVES: To test whether an intervention designed to encourage older patients and their caregivers to assert a more active role during care transitions can reduce rehospitalization rates. DESIGN: Quasi-experimental design whereby subjects receiving the intervention (n=158) were compared with control subjects derived from administrative data (n=1,235). SETTING: A large integrated delivery system in Colorado. PARTICIPANTS: Community-dwelling adults aged 65 and older admitted to the study hospital with one of nine selected conditions. INTERVENTION: Intervention subjects received tools to promote cross-site communication, encouragement to take a more active role in their care and assert their preferences, and continuity across settings and guidance from a transition coach. MEASUREMENTS: Rates of postdischarge hospital use at 30, 60, and 90 days. Intervention subjects' care experience was assessed using the care transitions measure. RESULTS: The adjusted odds ratio comparing rehospitalization of intervention subjects with that of controls was 0.52 (95% confidence interval (CI)=0.28-0.96) at 30 days, 0.43 (95% CI=0.25-0.72) at 90 days, and 0.57 (95% CI=0.36-0.92) at 180 days. Intervention patients reported high levels of confidence in obtaining essential information for managing their condition, communicating with members of the healthcare team, and understanding their medication regimen. CONCLUSION: Supporting patients and caregivers to take a more active role during care transitions appears promising for reducing rates of subsequent hospitalization. Further testing may include more diverse populations and patients at risk for transitions who are not acutely ill.

Embracing uncertainty: an exploration of the experiences of childhood cancer survivors.

Uncertainty is a central theme in the cancer survivorship and coping literature. Existing research on cancer-related uncertainty has primarily documented the adverse effects of existential uncertainty on survivors' well-being and located uncertainty within the stress and coping paradigm. Using in-depth qualitative interviews, the authors explores the paradoxical meanings and impact of uncertainty in the lives of long-term survivors of childhood cancer. The findings suggest that although uncertainty can be a source of distress, it can also be a catalyst for growth, a deepened appreciation for life, greater awareness of life purpose, development of confidence and resilience, and optimism. The results suggest that uncertainty is a dialectic phenomenon located within larger contexts of both stress and coping, and psychospiritual growth.

An action plan for translating cancer survivorship research into care.

To meet the complex needs of a growing number of cancer survivors, it is essential to accelerate the translation of survivorship research into evidence-based interventions and, as appropriate, recommendations for care that may be implemented in a wide variety of settings. Current progress in translating research into care is stymied, with results of many studies un- or underutilized. To better understand this problem and identify strategies to encourage the translation of survivorship research findings into practice, four agencies (American Cancer Society, Centers for Disease Control and Prevention, LIVE STRONG: Foundation, National Cancer Institute) hosted a meeting in June, 2012, titled: "Biennial Cancer Survivorship Research Conference: Translating Science to Care." Meeting participants concluded that accelerating science into care will require a coordinated, collaborative effort by individuals from diverse settings, including researchers and clinicians, survivors and families, public health professionals, and policy makers. This commentary describes an approach stemming from that meeting to facilitate translating research into care by changing the process of conducting research-improving communication, collaboration, evaluation, and feedback through true and ongoing partnerships. We apply the T0-T4 translational process model to survivorship research and provide illustrations of its use. The resultant framework is intended to orient stakeholders to the role of their work in the translational process and facilitate the transdisciplinary collaboration needed to translate basic discoveries into best practices regarding clinical care, self-care/management, and community programs for cancer survivors. Finally, we discuss barriers to implementing translational survivorship science identified at the meeting, along with future directions to accelerate this process.

Use of survivorship care plans in the United States: associations with survivorship care.

BACKGROUND: Survivorship care plans (SCPs), including a treatment summary and follow-up plan, intend to promote coordination of posttreatment cancer care; yet, little is known about the provision of these documents by oncologists to primary care physicians (PCPs). This study compared self-reported oncologist provision and PCP receipt of treatment summaries and follow-up plans, characterized oncologists who reported consistent provision of these documents to PCPs, and examined associations between PCP receipt of these documents and survivorship care. METHODS: A nationally representative sample of medical oncologists (n = 1130) and PCPs (n = 1020) were surveyed regarding follow-up care for breast and colon cancer survivors. All statistical tests were two-sided. Multivariable regression models identified factors associated with oncologist provision of treatment summaries and SCPs to PCPs (always/almost always vs less frequent). RESULTS: Nearly half of oncologists reported always/almost always providing treatment summaries, whereas 20.2% reported always/almost always providing SCPs (treatment summary + follow-up plan). Approximately one-third of PCPs indicated always/almost always receiving treatment summaries; 13.4% reported always/almost always receiving SCPs. Oncologists who reported training in late- and long-term effects of cancer and use of electronic medical records were more likely to report SCP provision (P < .05). PCP receipt of SCPs was associated with better PCP-reported care coordination, physician-physician communication, and confidence in survivorship care knowledge compared to receipt of neither treatment summaries nor SCPs (P < .05). CONCLUSIONS: Providing SCPs to PCPs may enhance survivorship care coordination, physician-physician communication, and PCP confidence. However, considerable progress will be necessary to achieve implementation of sharing SCPs among oncologists and PCPs.

Cancer survivors in the United States: prevalence across the survivorship trajectory and implications for care.

BACKGROUND: Cancer survivors represent a growing population, heterogeneous in their need for medical care, psychosocial support, and practical assistance. To inform survivorship research and practice, this manuscript will describe the prevalent population of cancer survivors in terms of overall numbers and prevalence by cancer site and time since diagnosis. METHODS: Incidence and survival data from 1975-2007 were obtained from the Surveillance, Epidemiology, and End Results Program and population projections from the United States Census Bureau. Cancer prevalence for 2012 and beyond was estimated using the Prevalence Incidence Approach Model, assuming constant future incidence and survival trends but dynamic projections of the U.S. population. RESULTS: As of January 1, 2012, approximately 13.7 million cancer survivors were living in the United States with prevalence projected to approach 18 million by 2022. Sixty-four percent of this population have survived 5 years or more; 40% have survived 10 years or more; and 15% have survived 20 years or more after diagnosis. Over the next decade, the number of people who have lived 5 years or more after their cancer diagnosis is projected to increase approximately 37% to 11.9 million. CONCLUSIONS: A coordinated agenda for research and practice is needed to address cancer survivors' long-term medical, psychosocial, and practical needs across the survivorship trajectory. IMPACT: Prevalence estimates for cancer survivors across the survivorship trajectory will inform the national research agenda as well as future projections about the health service needs of this population.

Identification and correlates of unmet service needs in adult leukemia and lymphoma survivors after treatment.

PURPOSE: To examine and characterize the psychosocial and health service needs of adult leukemia and lymphoma survivors who had completed active treatment within the past 4 years. METHODS: Self-report surveys were completed by 477 survivors, age 18 to 85 years, to identify areas and correlates of unmet psychosocial, health, and instrumental service needs. Unmet service needs were rank ordered, and nonparametric tests were run to assess relationships. RESULTS: The rate of unmet need was highest regarding sexual issues, handling medical and living expenses, emotional difficulties, employment, and health insurance. Women were more likely to report unmet child care needs than men; younger individuals were more likely to report needing help with emotional difficulties and family problems; and lower income was related to greater unmet need regarding medical and living expenses. Relationships were also observed among the service needs, suggesting overlapping areas of unmet need. CONCLUSION: Adult leukemia and lymphoma survivors demonstrated a diverse range of needs, many of which were related to the psychosocial and physical sequelae of cancer. The findings suggest directions for service provision and development of standards for quality care in this underserved post-treatment population.

Cancer survivors: a booming population.

BACKGROUND: In this first article of what is planned to be an annual series, we examine the history of cancer prevalence reporting and the role that these annual figures play in guiding the direction of cancer control research, and specifically the science of cancer survivorship. For this inaugural year, we focus on the confluence of the growing number of survivors and population aging, and the impact these combined trends will have on cancer survivorship in the future. METHODS: State or metro area-level cancer incidence and prevalence data were collected from 9 registries via the Surveillance, Epidemiology, and End Results Program. The complete prevalence method was used to estimate prevalence for 2008 and the Prevalence, Incidence Approach Model method was used to project prevalence data through 2020, assuming flat cancer incidence and survival trends but dynamic U.S. population projections. RESULTS: As of January 2008, the number of cancer survivors is estimated at 11.9 million. Approximately 60% of cancer survivors are age 65 or older, and by the year 2020, it is estimated that 63% of cancer survivors will be age 65 or older. CONCLUSIONS: Improved survival and population aging converge to generate a booming population of older adult cancer survivors, many of whom have multiple complex health conditions and unique survivorship needs. This demographic shift has important implications for future health care needs and costs of the U.S. population. IMPACT: The findings provide information critical for guiding cancer prevention and control research and service provision.

A comparison of two spirituality instruments and their relationship with depression and quality of life in chronic heart failure.

Spirituality is a multifaceted construct related to health outcomes that remains ill defined and difficult to measure. Spirituality in patients with advanced chronic illnesses, such as chronic heart failure, has received limited attention. We compared two widely used spirituality instruments, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) and the Ironson-Woods Spirituality/Religiousness Index (IW), to better understand what they measure in 60 outpatients with chronic heart failure. We examined how these instruments related to each other and to measures of depression and quality of life using correlations and principal component analyses. The FACIT-Sp measured aspects of spirituality related to feelings of peace and coping, whereas the IW measured beliefs, coping, and relational aspects of spirituality. Only the FACIT-Sp Meaning/Peace subscale consistently correlated with depression (r=-0.50, P<0.0001) and quality of life (r=0.41, P=0.001). Three items from the depression measure loaded onto the same factor as the FACIT-Sp Meaning/Peace subscale (r=0.43, -0.43, and 0.71), whereas the remaining 12 items formed a separate factor (Cronbach's alpha=0.82) when combined with the spirituality instruments in a principal component analysis. The results demonstrate several clinically useful constructs of spirituality in patients with heart failure and suggest that psychological and spiritual well-being, despite some overlap, remain distinct phenomena.