Robin L. Whitney

Mental health needs and service use in a national sample of adult cancer survivors in the USA: has psychosocial care improved?

This study aims to estimate and test temporal differences in mental health (MH) need and service use among adult cancer survivors nationally before and after important policy recommendations for psychosocial cancer care.

Existing data sets to support studies of dementia or significant cognitive impairment and comorbid chronic conditions

Dementia or other significant cognitive impairment (SCI) are often comorbid with other chronic diseases. To promote collaborative research on the intersection of these conditions, we compiled a systematic inventory of major data resources.

Systematic Review of Hospital Readmissions Among Patients With Cancer in the United States

Purpose/Objectives: To review the existing literature on readmission rates, predictors, and reasons for readmission among adults with cancer. Data Sources: U.S.‐based empirical studies reporting readmission rates from January 2005 to December 2015 were identified using four online library databases—PubMed, CINAHL®, EconLit, and the online bibliography of the National Cancer Institute’s Surveillance Epidemiology and End Results Program. Some articles were identified by the authors outside the database and bibliography searches. Data Synthesis: Of the 1,219 abstracts and 271 full‐text articles screened, 56 studies met inclusion criteria. The highest readmission rates were observed in patients with bladder, pancreatic, ovarian, or liver cancer. Significant predictors of readmission included comorbidities, older age, advanced disease, and index length of hospital stay. Common reasons for readmission included gastrointestinal and surgical complications, infection, and dehydration. Conclusions: Clinical efforts to reduce the substantial readmission rates among adults with cancer may target high‐rate conditions, infection prevention, proactive management of nausea and vomiting, and nurse‐led care coordination interventions for older adult patients with multiple comorbid conditions and advanced cancer. Implications for Nursing: Commonly reported reasons for readmission were nursing‐sensitivepatient outcomes (NSPOs), amenable to nursing intervention in oncology settings. These findings underscore the important role oncology nurses play in readmission prevention by implementing evidence‐based interventions to address NSPOs and testing their impact in future research.

Coordination at the Point of Need

Abstract For individuals with chronic and prolonged conditions such as cancer, care is complicated, fragmented, and poorly coordinated. Individuals with cancer experience transitions from home to physician office, clinic, outpatient service, emergency department, inpatient hospital, and community-based settings attended by different practitioners and numerous specialists at each. Because health care systems have not addressed community-wide care coordination, the burden of coordinating is often left to the individual and their family to manage. Chronic disease care coordination frameworks help unpack the challenges and provide ways to understand how to intervene to improve care coordination for cancer. These frameworks elucidate the importance of the comprehensive person-centered, community-wide, and life span approach to coordination. Health information technology (HIT) is a critical enabler of solutions to these challenges. HIT-enabled care coordination is in a nascent stage in which most examples are within health care teams with limited interactions with patients. There are a number of examples of HIT solutions involving electronic health records, single-purpose mobile applications, or patient portals in chronic disease and fewer in cancer care coordination. There are few examples of platforms that support the comprehensive approaches needed. This offers great opportunity for collaboration among informatics, clinical, and patient participants to design, develop, implement, and evaluate HIT that effectively addresses the comprehensive nature of care coordination. This chapter offers an overview of care coordination frameworks, HIT functions needed for care coordination, examples of HIT-enabled care coordination, and opportunities to move the field forward.

Usability and acceptance of novel personal health technology to support early palliative care for patients with cancer and caregivers.

73 Background: Little research has assessed whether and how technology can support early palliative care. Our team developed a HIPAA-compliant, cloud-based Personal Health Network (PHN) with a secure, online network of family, caregivers, clinicians and service providers designated by the patient; symptom reporting/management resources; and support for communication among network members via audio/video conferencing, messaging, and document sharing. This study examines PHN usability and acceptance, and identifies additional functions for early palliative care. METHODS Patients undergoing chemotherapy in a Comprehensive Cancer Center (n = 19) and their caregivers (n = 17) watched video demonstrations of the technology, participated in semi-structured interviews, and completed surveys measuring computer self-efficacy, PHN usability and acceptance. RESULTS Most participants were male with college education; mean age was 58 years. Most had a tablet or desktop computer (75%), a mobile phone (94%) and believed that technology improves the security of medication information (66%). At the same time, only 44% used email to contact healthcare providers and 30% used the internet to connect with others for support and information. Most reported the PHN was easy to learn and use and was an efficient and useful tool for patient-driven social networking, team communication, care coordination and symptom management. Participants suggested adapting the PHN to support spiritual and emotional needs and advance care planning. Common concerns included skepticism about receipt of timely responses from providers to symptom reports and the need for ongoing support for older adults with limited technology experience. CONCLUSIONS These preliminary findings support adaption of the PHN to support palliative care components identified as important to patients and caregivers and further PHN usability and acceptance testing in larger, more diverse samples. The results also underscore the need for systems to support technology users, to clarify expectations of response time with patients and caregivers, and to assure these expectations can be met by healthcare providers.

Caregiver work modifications: A hidden cost of cancer care.

190 Background: Recent national reports highlight the dramatically rising costs of cancer care and its impact on financial hardship among survivors. Comparatively little attention, however, has been paid to the contributions of family and friends in unpaid caregiving roles-specifically, the impact of caregiving on caregivers jobs and work life. METHODS Using data collected in the 2012 LIVESTRONG Survey of People Affected by Cancer, we examined the prevalence of cancer survivors reporting that they had a friend or family member providing care to them during or after cancer treatment. Then, among those reporting they had a caregiver employed at that time, we used logistic regression to examine caregiver work modifications (i.e., paid time, unpaid time off, changing hours or duties, or making a change in employment status. All models controlled for survivor age at diagnosis, sex, race/ethnicity, income, education and employment status as potential predictors. RESULTS Of the respondents (n = 6310), 88% reported a family member or friend provided care as follows (in non-mutually exclusive categories): spouses (64%), friends (47%), parents (40%), siblings (31%), children (28%) or other family member (14%). Among survivors with employed caregivers (n = 4,984), 41% reported that their caregiver made a work modification; of these 57% took paid time off, 41% took unpaid time off, 4% switched from full time to part time and 3% took early retirement. Caregivers were more likely to make work modifications for survivors with low (versus high) income or education and for unemployed (versus employed) survivors. The age of the survivor was also a significant factor, with caregivers making more work modifications for younger survivors (ages 18-64) compared to older survivors (age > 65)-with ORs of caregiver work modfications increasing from 1.70 to 6.92 in a dose response by survivor age. CONCLUSIONS Family and friends provide care to a majority of individuals with cancer and many make substantial modifications to their work-contributions which are not routinely counted in estimates of the cost of cancer care. Interventions may be warranted to support caregivers, particular those of survivors with lower income, less education and those of younger age.

Work and financial disparities among adult cancer survivors in the United States.

238 Background: The prevalence of cancer in the US continues to increase, with 18.1 million projected survivors by 2020. Few recent population-based studies have examined cancer-related work and financial disparities in this growing population. METHODS Cancer-related work modifications (e.g., changing to a flexible schedule or less demanding job, early or delayed retirement, extended or unpaid time off) and financial difficulties (e.g., debt, worry about medical bills, bankruptcy) were examined in the 2011 Medical Expenditures Panel Survey Experiences with Cancer Survivorship Supplement (n=1,592). Survey-weighted logistic regression was used to model the odds of having any work modification or financial difficulty and negative binomial regression to model counts of these outcomes as functions of survivorship status (i.e., active treatment, <5 years post-treatment, and ≥5 post-treatment=reference) and socio-demographic covariates. Results are generalizable to the civilian, non-institutionalized US population. RESULTS Among survivors, 27% reported at least one financial difficulty and 37% reported making work modifications due to cancer. Significant predictors of work modifications included: active treatment (OR 2.9; 95% CI 1.7-4.9), with 40% more modifications than those ≥5 years post-treatment; females (OR 1.5; 95% CI 1.1-2.2), with 30% more modifications; and race/ethnicity other than white (OR 1.7; 95% CI 1.1-2.6,), with 54% more modifications. Significant predictors of financial difficulties included: active treatment (OR 3.2; 95% CI 2.1-5.0), with 92% more difficulties; age <65 years (OR 2.4; 95% CI 1.7-3.3), with 130% more difficulties; no insurance (OR 2.4; 95% CI 1.3-4.4), with 67% more difficulties; and race/ethnicity other than white (OR 1.6; 95% CI 1.1-2.3), with 41% more difficulties. CONCLUSIONS Significant work and financial disparities exist among US cancer survivors, particularly women, younger survivors, racial/ethnic minorities, and those without insurance. Active treatment predicted these concerns, but did not fully account for observed disparities. Screening and support for work and financial concerns is needed across the survivorship trajectory, with particular attention to groups at risk.

Psychosocial outcomes in active treatment through survivorship

The objective of the study is to understand potential differences in psychosocial outcomes from active treatment to survivorship.

Hospitalization Rates and Predictors of Rehospitalization Among Individuals With Advanced Cancer in the Year After Diagnosis

Purpose Among individuals with advanced cancer, frequent hospitalization increasingly is viewed as a hallmark of poor-quality care. We examined hospitalization rates and individual- and hospital-level predictors of rehospitalization among individuals with advanced cancer in the year after diagnosis. Methods Individuals diagnosed with advanced breast, colorectal, non-small-cell lung, or pancreatic cancer from 2009 to 2012 (N = 25,032) were identified with data from the California Cancer Registry (CCR). After linkage with inpatient discharge data, multistate and log-linear Poisson regression models were used to calculate hospitalization rates and to model rehospitalization in the year after diagnosis, accounting for survival. Results In the year after diagnosis, 71% of individuals with advanced cancer were hospitalized, 16% had three or more hospitalizations, and 64% of hospitalizations originated in the emergency department. Rehospitalization rates were significantly associated with black non-Hispanic (incidence rate ratio [IRR], 1.29; 95% CI, 1.17 to 1.42) and Hispanic (IRR, 1.11; 95% CI, 1.03 to 1.20) race/ethnicity; public insurance (IRR, 1.37; 95% CI, 1.23 to 1.47) and no insurance (IRR, 1.17; 95% CI, 1.02 to 1.35); lower socioeconomic status quintiles (IRRs, 1.09 to 1.29); comorbidities (IRRs, 1.13 to 1.59); and pancreatic (IRR, 2.07; 95% CI, 1.95 to 2.20) and non-small-cell lung (IRR, 1.69; 95% CI, 1.54 to 1.86) cancers versus colorectal cancer. Rehospitalization rates were significantly lower after discharge from a hospital that had an outpatient palliative care program (IRR, 0.90; 95% CI, 0.83 to 0.97) and were higher after discharge from a for-profit hospital (IRR, 1.33; 95% CI, 1.14 to 1.56). Conclusion Individuals with advanced cancer experience a heavy burden of hospitalization in the year after diagnosis. Efforts to reduce hospitalization and provide care congruent with patient preferences might target individuals at higher risk. Future work might explore access to palliative care in the community and related health care use among individuals with advanced cancer.

Psychosocial outcomes among cancer survivors who receive a treatment summary or survivorship care plan.

217 Background: Treatment summaries (TSs) and survivorship care plans (SCPs) were expected to bridge patient-provider communication challenges and better address the unique needs of cancer survivors. While interest in TSs and SCPs has been growing, acceptance and implementation has been slow and findings from studies of their effectiveness have been mixed, overall. Our study examines independent associations of receipt of TSs and SCPs with psychosocial outcomes of cancer survivors. METHODS The study sample included survivors completing the 2012 LIVESTRONG Survey for People Affected by Cancer (n = 5,156). Logistic regression was used to model three distinct psychosocial outcomes: having relationship concerns (yes/no), distress (defined as a rating of 6 or higher on the NCCN Distress Thermometer), and moderate or severe cancer-specific worry (yes/no) as functions of TS receipt, SCP receipt and important confounding variables (age, sex, race/ethnicity, marital status, employment, income, education and health insurance). RESULTS Among cancer survivors, only 51% received a TS and only 16% received a SCP. Survivors who received a TS or SCP had significantly lower odds of relationship concerns (TS: OR = 0.62; 95% CI 0.52, 0.75; SCP: OR = 0.73; 95% CI 0.57, 0.94); distress (TS: OR = 0.74; 95% CI 0.65, 0.85; SCP: OR = 0.81; 95% CI 0.68, 0.97); and moderate or severe cancer-specific worry (TS: OR = 0.76; 95% CI: 0.67-0.85; SCP: OR = 0.78; 95% CI: 0.67-0.92). Other covariates consistently associated with psychosocial concerns included younger age, being unemployed and income ≤