Background Patients with advanced cancer who have dependent children are an important population with a life-limiting illness and high levels of psychological distress. Few studies have addressed the experience of being a parent with advanced cancer and their potential palliative needs. Aim To describe the experience of living with advanced cancer as a parent, including illness experience, parental concerns, and treatment decision-making and to explore whether these experiences differ by their functional status. Design We conducted a cross-sectional, qualitative study using in-depth, semi-structured interviews. Data were analyzed using thematic content analysis. Setting/participants 42 participants with metastatic cancer and with at least one child under the age of 18 years were recruited from a comprehensive cancer center. 25 participants were rated as having high functional status (the Eastern Cooperative Oncology Group [ECOG] performance status scale = 0–1) and 17 with low functional status (ECOG 2–4). Results We identified four themes regarding the experience of being a parent with advanced cancer: (1) parental concerns about the impact of their illness and death on their children; (2) “missing out” and losses of parental role and responsibilities; (3) maintaining parental responsibilities despite life-limiting illness; (4) and parental identity influencing decision-making about treatment. Parental functional status influenced not only physical responsibilities but also intensified parenting psychological concerns. Conclusions Parents with metastatic cancer may have unique palliative care needs as they experience parenting concerns while managing the psychological and physical demands of advanced cancer.

Objective Parents with life-limiting illness anticipate the loss of their parental role and the long-term consequences of their illness on their children. The purpose of this study was to examine relationships between parenting concerns, quality of life (QOL), and symptoms of depression and anxiety in parents with advanced cancer who have dependent children. Methods Sixty-three parents diagnosed with a Stage IV solid malignancy completed the Hospital Anxiety Depression Scale (HADS), Parenting Concerns Questionnaire (PCQ), and Functional Assessment of Cancer Therapy - General (FACT-G). The Medical Outcomes Study Social Support Survey (social support) and Eastern Cooperative Oncology Group (ECOG) performance status were assessed as potential covariates. We performed descriptive statistics and multivariable linear regression models for depression, anxiety, and QOL measures. Results Mean PCQ score was 2.3 (SD 0.9), reflecting mild to moderate parenting concerns. Average depression and anxiety scores were 6.0 (SD 4.2 and 8.2 (SD 3.9), respectively. PCQ scores were associated with depressive symptoms (r = 0.46, p < 0.001), anxiety symptoms (r = 0.52, p < 0.0001) and QOL scores (r = −0.60, p < 0.001). The relationship of PCQ scores to anxiety symptoms (B = 1.5 p = 0.016) and QOL (B = −5.7, p = 0.02) remained significant after controlling for ECOG status, social support, and treatment status. Conclusions Parenting concerns are associated with anxiety and depressive symptoms and worse QOL in parents diagnosed with advanced cancer. Further studies that evaluate how parental status affects coping and psychological distress in advanced cancer are needed.

Background The Institute of Medicine (2006) recommended that cancer survivors completing primary treatment receive a survivorship care plan (SCP) based on face validity. The state of scientific knowledge regarding SCP is unclear. We conducted an integrative review of existing evidence regarding SCP. Methods We searched MEDLINE /PubMed, EMBASE, and CINAHL for relevant studies published between 2006 – 2013 using a combination of keywords: ‘survivors,’ ‘survivorship,’ ‘care plans,’ ‘care planning,’ ‘treatment summaries’ and ‘cancer.’ Articles were included if they (1) reported results of an empirical study; (2) included cancer survivors diagnosed at age 18 or older; (3) related to SCP; and (4) were published in English. A total of 781 records were retrieved; 77 were duplicates, 665 were abstracts or presentations, did not relate to SCP for adults or were not empirical – leaving 42 for inclusion in this review. Results Studies regarding SCP fell into three categories: (a) content (n=14); (b) dissemination and implementation (n=14); and (c) survivor and provider outcomes (n=14). SCP were endorsed and associated with improved knowledge, but SCP use remains sporadic. Only 4 studies were randomized controlled trials (RCT) that avoided many biases associated with observational studies. Other limitations included cross-sectional or pre-post designs, limited generalizability due to lacking sample diversity, and lack of systematic testing of data collection tools. Conclusions The quantity and quality of SCP research is limited. SCP were endorsed, but evidence of improved outcomes associated with SCP is limited. Future research that addresses extant studies’ methodological concerns is needed regarding SCP use, content, and outcomes.

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Objective Effective physician communication about prognosis is a critical aspect of quality care for families affected by terminal illness. This is particularly important for spousal caregivers of terminally ill parents of dependent children, who may have unique needs for communication about anticipated death. The objective of this study was to explore end-of-life prognostic communication experiences reported by bereaved fathers whose wives died from cancer. Methods From October 2012 to November 2013 we surveyed widowed fathers whose wives died from cancer through an open-access educational website. The survey included the following open-ended questions regarding prognostic communication: “What is the most important thing you would like us to know about whether/how your wife's doctors communicated with you about her anticipated death? What do you wish had been different, if anything?” We performed traditional content analysis of responses. Two researchers coded and categorized the data. Results Two hundred forty-four men responded to the survey questions on prognostic communication. Major themes addressed by respondents were the importance of clear and honest communication and physician bedside manner. They also identified unmet information needs, including wanting to know prognosis sooner. Relevant sub-themes included death coming as a surprise, avoidance, and caregiver regret. Conclusions Surviving spouses due to cancer can provide important insights for health care providers about optimum prognostic communication at the end of life. Increased physician attention to the communication preferences of both patients and their partners may improve bereavement outcomes for family members.

Research institutions differ in their willingness to defer to a single, central institutional review board (IRB) for multicenter clinical trials, despite statements from the FDA, OHRP, and NIH in support of using central IRBs to improve the efficiency of conducting trials. The Clinical Trials Transformation Initiative (CTTI) supported this project to solicit current perceptions of barriers to the use of central IRBs and to formulate potential solutions. We held discussions with IRB experts, interviewed representatives of research institutions, and held an expert meeting with diverse stakeholder groups and thought leaders. We found that many perceived barriers relate to conflating responsibilities of the institution with the ethical review responsibilities of the IRB. We identified the need for concrete tools to help research institutions separate institutional responsibilities from ethical responsibilities required of the IRB. One such tool is a document we created that delineates these responsibilities and how they might be assigned to each entity, or, in some cases, both entities. This tool and project recommendations will be broadly disseminated to facilitate the use of central IRBs in multicenter trials. The ultimate goal is to increase the nation’s capacity to efficiently conduct the large number of high-quality trials.

Early supportive care may improve quality of life and end-of-life care among patients with cancer. We assessed racial disparities in early use of medications for common cancer symptoms (depression, anxiety, insomnia) and whether these potential disparities modify end-of-life care. MethodsWe used 2007 to 2012 SEER-Medicare data to evaluate use of supportive medications (opioid pain medications and nonopioid psychotropics, including antidepressants/anxiolytics and sleep aids) in the 90 days postdiagnosis among black and white women with stage IV breast cancer who died between 2007 and 2012. We used modified Poisson regression to assess the relationship between race and supportive treatment use and end-of-life care (hospice, intensive care unit, more than one emergency department visit or hospitalization 30 days before death, in-hospital death). ResultsThe study included 752 white and 131 black women. We observed disparities in nonopioid psychotropic use between black and white women (adjusted risk ratio [aRR], 0.51; 95% CI, 0.35 to 0.74) but not in opioid pain medication use. There were also disparities in hospice use (aRR, 0.86; 95% CI, 0.74 to 0.99), intensive care unit admission or more than one emergency department visit or hospitalization 30 days before death (aRR, 1.28; 95% CI, 1.01 to 1.63), and risk of dying in the hospital (aRR, 1.59; 95% CI, 1.22 to 2.09). Supportive medication use did not attenuate end-of-life care disparities. ConclusionWe observed racial disparities in early supportive medication use among patients with stage IV breast cancer. Although they did not clearly attenuate end-of-life care disparities, medication use disparities may be of concern if they point to disparities in adequacy of symptom management given the potential implications for quality of life.

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