Informal/family caregivers are a fundamental source of care for cancer patients in the United States, yet the population of caregivers, their tasks, psychosocial needs and health outcomes are not well understood. Changes in the nature of cancer care and its delivery, along with the growing population of survivors and by consequence, their caregivers, warrant increased attention to the roles and demands of caregiving. This paper reviews current evidence presented in a two-day meeting to examine the state of the science of informal cancer caregiving convened by the National Cancer Institute and National Institute for Nursing Research. The meeting sought to define who is an informal cancer caregiver, summarize the state of the science in informal cancer caregiving, and describe both the kinds of interventions developed to address caregiving challenges and the various outcomes used to evaluate their impact. This paper offers recommendations for moving science forward in four areas: (1) improve estimation of the prevalence and burden of informal cancer caregiving; (2) advance development of interventions designed to improve outcomes in cancer patients, caregivers, and patient-caregiver dyads; (3) generate and test strategies to integrate caregivers into formal healthcare settings; and (4) promote use of technology to support informal cancer caregivers.

Objective This study sought to examine the relationship among the amount of stress, the perception that stress affects health, and health and mortality outcomes in a nationally-representative sample of U.S. adults. Methods Data from the 1998 National Health Interview Survey were linked to prospective National Death Index mortality data through 2006. Separate logistic regression models were used to examine the factors associated with current health status and psychological distress. Cox proportional hazard models were used to determine the impact of perceiving that stress affects health on all-cause mortality. Each model specifically examined the interaction between the amount of stress and the perception that stress affects health, controlling for sociodemographic, health behavior, and access to healthcare factors. Results 33.7% of nearly 186 million (n=28,753) U.S. adults perceived that stress affected their health a lot or to some extent. Both higher levels of reported stress and the perception that stress affects health were independently associated with an increased likelihood of worse health and mental health outcomes. The amount of stress and the perception that stress affects health interacted such that those who reported a lot of stress and that stress impacted their health a lot had a 43% increased risk of premature death (HR = 1.43, 95% CI [1.20, 1.71]). Conclusions High amounts of stress and the perception that stress impacts health are each associated with poor health and mental health. Individuals who perceived that stress affects their health and reported a large amount of stress had an increased risk of premature death.

Background Both shorter and longer telomeres in peripheral blood leukocyte (PBL) DNA have been associated with cancer risk. However, associations remain inconsistent across studies of the same cancer type. This study compares DNA preparation methods to determine telomere length from colorectal cancer patients. Methods We examined PBL relative telomere length (RTL) measured by quantitative PCR (qPCR) in 1,033 colorectal cancer patients and 2,952 healthy controls. DNA was extracted with Phenol/Chloroform, PureGene or QIAamp. Results We observed differences in RTL depending on DNA extraction method (p<0.001). Phenol/Chloroform extracted DNA had a mean RTL (T/S ratio) of 0.78 (range 0.01-6.54) ) compared to PureGene extracted DNA (mean RTL of 0.75; range 0.00-12.33). DNA extracted by QIAamp yielded a mean RTL of 0.38 (range 0.02-3.69). We subsequently compared RTL measured by qPCR from an independent set of 20 colorectal cancer cases and 24 normal controls in PBL DNA extracted by each of the three extraction methods. The range of RTL measured by qPCR from QIAamp-extracted DNA (0.17-0.58-) was smaller than from either PureGene or Phenol/Chloroform (ranges:0.04-2.67 and 0.32-2.81, respectively). Conclusions RTL measured by qPCR from QIAamp-extracted DNA was smaller than from either PureGene or Phenol/Chloroform (p<0.001). Impact Differences in DNA extraction method may contribute to the discrepancies between studies seeking to find an association between the risk of cancer or other diseases and RTL.

Purpose Perceived quality of care (QOC) is an increasingly important metric of care quality and can be affected by such factors among patients with cancer as quality of life and physician trust. This study sought to evaluate whether informal caregiver well-being was also associated with perceived QOC among patients with cancer and assessed potential pathways that link these factors. Methods This study used data from the Cancer Care Outcomes Research and Surveillance (CanCORS) consortium. Patients with lung and colorectal cancer enrolled in CanCORS (N = 689) nominated an informal caregiver to participate in a caregiving survey. Both groups self-reported sociodemographic, psychosocial, and caregiving characteristics; cancer characteristics were obtained from the CanCORS core data set. Multivariable logistic regression was used to assess the association between caregiver psychosocial factors and subsequent patient-perceived QOC, controlling for earlier patient-perceived QOC and covariates. Secondary analysis examined potential pathways that link these factors. Results Patients whose informal caregiver had higher levels of depressive symptoms were significantly more likely to report fair or poor QOC (odds ratio, 1.06; 95% CI, 1.01 to 1.13). When caregivers reported fair or poor self-rated health, patients were more than three times more likely to report fair or poor perceived QOC (odds ratio, 3.76; 95% CI, 1.76 to 9.55). Controlling for patient psychosocial factors and physician communication and coordination of medical care reduced the effect size and/or statistical significance of these relationships. Conclusion Informal caregivers are an important part of the care team and their well-being is associated with patient-perceived QOC. Engaging informal cancer caregivers as part of the care team and conducting ongoing risk stratification screening and intervention to optimize their health may improve patient-reported outcomes and QOC.

Purpose-To determine if caring for a child with cancer or a brain tumor affects parental health and mental health and if and to what extent stress mediates the relationship between case status and parental quality of life.Methods-In person interviewer-assisted surveys were administered to 74 case dyads (children diagnosed with cancer or a brain tumor and their parents) and 129 control dyads (children without health problems and their parents from a community sample) to assess health-related quality of life and perceived levels of stress.Results-Parents of children with cancer or a brain tumor had significantly worse health-related quality of life, including worse overall mental health. Overall physical health was no different between cases and controls. Staged multivariate analysis revealed that worse health-related quality of life is completely mediated by perceived stress in these parents.Conclusions-The experience of caring for a child with cancer is not in itself related to poor quality of life, but is related to an increased level of stress that may adversely impact parental mental health and quality of life.

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Objectives We sought to determine if and to what extent a woman’s exposure to stressful life events prior to conception (PSLEs) were associated with subsequent infant birth weight by using a nationally representative sample of US women. Methods We examined 9350 mothers and infants participating in the first wave of the Early Childhood Longitudinal Study-Birth Cohort in 2001. Weighted regressions estimated the effect of exposure on very low and low birth weight, adjusting for maternal sociodemographic and health factors and stress during pregnancy. Results Twenty percent of women experienced any PSLE. In adjusted analyses, exposed women were 38% more likely to have a very low birth weight infant than nonexposed women. Furthermore, the accumulation of PSLEs was associated with reduced infant birth weight. Conclusions This was the first nationally representative study to our knowledge to investigate the impact of PSLEs on very low and low birth weight in the United States. Interventions aimed to improve birth outcomes will need to shift the clinical practice paradigm upstream to the preconception period to reduce women’s exposure to stress over the life course and improve the long-term health of children.

Purpose Poor health of one spouse can adversely influence the partner’s health outcomes (“spillover”). This study aimed to estimate quality of life spillover among spouses, and to determine how presence of cancer influenced these effects. Methods We examined data on husband-wife dyads with cancer-related health problems, medical events, or disabilities (n=910) and matched comparison dyads from the 2004-2012 Medical Expenditures Panel Survey, a population-based survey of the U.S. Mental and physical health-related quality of life and depressed mood were reported at two time points (T1 and T2, 11 months apart on average). Dyadic multilevel models evaluated the cross-lagged impact of HRQoL and depressed mood at T1 on spouses’ HRQoL at T2, controlling for sociodemographics and health conditions. Results Small but statistically significant spillover was observed for mental and physical HRQoL among couples with cancer. Spillover occurred from both the spouse to the survivor, and from survivor to spouse. Depressed mood, in particular, showed stronger spillover effects from the spouse to the survivor than the inverse. Similar effects were not observed in dyads without cancer. Conclusions Screening for and treating poor HRQoL and depressed mood concurrently in both cancer survivors and their spouses may positively influence HRQoL outcomes. Future research is needed to further elucidate these findings and determine whether a concurrent approach to psychosocial care in survivors and their spouses may improve long-term outcomes.