Lynne Padgett

Survivors of Childhood Cancer in the United States: Prevalence and Burden of Morbidity

Background: No studies have estimated the population-level burden of morbidity in individuals diagnosed with cancer as children (ages 0–19 years). We updated prevalence estimates of childhood cancer survivors as of 2011 and burden of morbidity in this population reflected by chronic conditions, neurocognitive dysfunction, compromised health-related quality of life, and health status (general health, mental health, functional impairment, functional limitations, pain, and fear/anxiety). Methods: Surveillance, Epidemiology, and End Results (SEER) Program data from 1975 to 2011 were used to update the prevalence of survivors of childhood cancers in the United States. Childhood Cancer Survivor Study data were used to obtain estimates of morbidity burden indicators, which were then extrapolated to SEER data to obtain population-level estimates. Results: There were an estimated 388,501 survivors of childhood cancer in the United States as of January 1, 2011, of whom 83.5% are ≥5 years after diagnosis. The prevalence of any chronic condition among ≥5-year survivors ranged from 66% (ages 5–19) to 88% (ages 40–49). Estimates for specific morbidities ranged from 12% (pain) to 35% (neurocognitive dysfunction). Generally, morbidities increased by age. However, mental health and anxiety remained fairly stable, and neurocognitive dysfunction exhibited initial decline and then remained stable by time since diagnosis. Conclusions: The estimated prevalence of survivors of childhood cancer is increasing, as is the estimated prevalence of morbidity in those ≥5 years after diagnosis. Impact: Efforts to understand how to effectively decrease morbidity burden and incorporate effective care coordination and rehabilitation models to optimize longevity and well-being in this population should be a priority. Cancer Epidemiol Biomarkers Prev; 24(4); 653–63. ©2015 AACR.

A Practice-Based Evaluation of Distress Screening Protocol Adherence and Medical Service Utilization

Background: This study examined the extent to which cancer programs demonstrated adherence to their own prescribed screening protocol, and whether adherence to that protocol was associated with medical service utilization. The hypothesis is that higher rates of service utilization are associated with lower rates of adherence to screening protocols. Methods: Oncology social workers at Commission on Cancer-accredited cancer programs reviewed electronic health records (EHRs) in their respective cancer programs during a 2-month period in 2014. Rates of overall adherence to a prescribed distress screening protocol were calculated based on documentation in the EHR that screening adherence and an appropriate clinical response had occurred. We examined documentation of emergency department (ED) use and hospitalization within 2 months after the screening visit. Results: Review of 8,409 EHRs across 55 cancer centers indicated that the overall adherence rate to screening protocols was 62.7%. The highest rates of adherence were observed in Community Cancer Programs (76.3%) and the lowest rates were in NCI-designated Cancer Centers (43.3%). Rates of medical service utilization were significantly higher than expected when overall protocol adherence was lacking. After controlling for patient and institutional characteristics, risk ratios for ED use (0.82) and hospitalization (0.81) suggest that when overall protocol adherence was documented, 18% to 19% fewer patients used these medical services. Conclusions: The observed associations between a mandated psychosocial care protocol and medical service utilization suggest opportunities for operational efficiencies and costs savings. Further investigations of protocol integrity, as well as the clinical care models by which psychosocial care is delivered, are warranted.

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

ABSTRACTWe 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.

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.

Leveraging Affective Science to Maximize the Effectiveness of Palliative Care

TO THE EDITOR: Two recently published articles clearly demonstrate the promise—and limitations—of early palliative care for patient with cancer and their caregivers. Taken together, findings suggest that palliative care may positively influence mortality and quality of life (QOL) among patients with cancer but not necessarily among caretakers. These articles raise three important questions: First, what mechanisms underlie the mortality benefits of palliative care interventions? Second, why don’t such interventions yield uniform improvements in patient and caregiver QOL? Third, why don’t such interventions improve the caregivers’ QOL? Affective science, or the study of affect (eg, emotion, stress, or mood), is relevant to these questions, because each question involves an examination of how affect contributes to the effectiveness of palliative care. Leveraging theoretical and methodological advances from affective science may help answer these questions and improve our understanding of mechanisms underlying the effectiveness, or lack thereof, of palliative care interventions. Better understanding could improve outcomes for patients with cancer and their caregivers. What mechanisms underlie the mortality benefits of palliative care interventions? Although it seems intuitive that improvements in affective well-being or decreases in depressive symptoms would play a role, evidence for these mechanisms is lacking. Although other factors may be implicated, it is equally likely that the conceptualization and measurement of these constructs decrease the likelihood of identification of affective mechanisms. First, the common practice of assessment of affect at regular post-intervention intervals, although an important preliminary step for identifying the mechanism of effect, may not adequately capture the complexity and temporal trajectory of emotional response. Instruments that capture discrete emotions (eg, fear, sadness, anger, and happiness) versus broader global constructs (eg, depression) allow researchers to examine the complexity of affective experience, which can be more predictive of outcomes. Techniques such as ecologic momentary assessment allow researchers to capture affective reactivity and recovery trajectories, which can be more predictive of outcomes than a static picture of overall affect. Although measurement precision must be viewed in the context of patient burden, the advent of personally available technologies (eg, smartphones) may make this type of administration feasible. Second, affective constructs extend beyond those commonly examined as mechanisms or outcomes in these or other palliative care intervention trials. Although QOL and depression are important outcomes, other affective factors with relevance to well-being and functioning exist. These include emotion regulation and coping, stress reactivity and resilience, and positive affect. Note that positive and negative affect can be experienced simultaneously and, as such, would not be captured with a scale of depressive symptoms. Positive affect may be a particularly promising mechanism to examine, given that it is associated with a number of beneficial outcomes. Moreover, measurement of clinical affective syndromes (eg, depression, or anxiety) and QOL may miss nuances related to the functional role of affect. For patients with cancer, emotions like sadness and fear, though distressing and negative, can motivate actions that improve outcomes. For example, sadness over one’s early death may motivate a patient to mend relationships. Thus, it is possible that palliative care interventions allow patients to come to terms with their negative affects, rather than changing them, and that this acceptance is what predicts better outcomes. Why are improvements in QOL not uniform? The exclusive focus on QOL and depressive symptoms also may account for mixed findings about QOL. For example, if acceptance of negative affect as normative is the mechanism that underlies intervention effectiveness, assessment of QOL rather than acceptance of negative affect may lack the needed precision to detect effects. Thus, acceptance of negative affect may sometimes, but not always, translate to improvements in QOL. In this example, assessment of QOL would result in mixed effects because of its inconsistent relationship with negative affect, but assessment of acceptance of negative affect would more precisely allow mechanism identification. Why don’t such interventions improve caregivers’ QOL? Caregivers may also be motivated by negative affect and, therefore, benefit from its experience. As a result, the question of improving the caregiver experience may be framed better as follows: Can we improve caregivers’ abilities to accept negative affect as normal and functional and promote resilience and emotional recovery when the caregiving relationship has ended? Moving forward, we need to identify mechanisms that underlie the effectiveness of palliative care interventions to improve the strategic intervention design for maximized effectiveness, efficiency, and dissemination. Although these set of findings highlight effectiveness and point to the promise of wider dissemination, large-scale trials that focus on identifying mechanisms of effectiveness are needed. Therefore, it is critical that palliative care researchers partner with affective scientists to ensure that they are capturing important nuances in affect responsible for the effectiveness of palliative care interventions. The National Cancer Institute seeks to facilitate such collaborations.

The Intersection of Rehabilitation and Palliative Care: Patients With Advanced Cancer in the Inpatient Rehabilitation Setting

Background Patients diagnosed with advanced cancer often differ from the traditional patient typically seen in the inpatient rehabilitation setting. Purpose To identify differences in care while highlighting the considerable similarities between the complementary specialties of palliative care and rehabilitation, and to provide rehabilitation clinicians with knowledge and skills to enhance care for palliative care patients and their families. Methodology Narrative literature review describing common functional losses in patients diagnosed with advanced cancer, followed by articulation of the intersection of palliative care with traditional rehabilitation approaches and goals. Conclusion The evidence supports implementation of a distinct body of skills and knowledge, referred to as “palliative rehabilitation,” among inpatient rehabilitation providers. Clinical Implications Implementing palliative rehabilitation skills can improve the quality of care within the inpatient rehabilitation setting for patients with advanced cancer.