Experience and Needs of Patients With Young-Onset Colorectal Cancer and Their Caregivers: A Qualitative Study.

PURPOSE: The incidence of young-onset colorectal cancer (YOCRC; defined as patients who are diagnosed with CRC before age 50 years) is rising rapidly, and CRC is predicted to be the leading cause of cancer death in this age group by 2030. Yet, there has been limited research into the experiences and needs of patients with YOCRC and their caregivers. The goal of this study was to better understand the experiences and needs of patients with YOCRC and their caregivers. PATIENTS AND METHODS: Semistructured focus groups were conducted with patients with YOCRC, caregivers of patients with YOCRC, and bereaved caregivers of patients with YOCRC. Focus group discussion guides addressed the experience and impact of diagnosis and treatment of YOCRC. Results were analyzed using a thematic analysis informed by framework analysis. RESULTS: Twenty patients and caregivers participated in three focus groups (eight patients, seven caregivers, and five bereaved caregivers). Four primary themes were identified: (1) feeling overwhelmed by the health care system and desiring patient navigation; (2) feeling isolated and wanting opportunities for peer support; (3) life disruption because of difficulty juggling multiple roles and desiring psychosocial support; and (4) enthusiasm about participation in research and genetic testing. CONCLUSION: This study identified and described the unique experiences and care needs of patients with YOCRC and their caregivers. The findings provide evidence that specialized models of care are needed. The results of this study informed the development of a center dedicated to the care of patients with YOCRC.

Cancer Caregivers' Prognostic and End-of-Life Communication Needs and Experiences and their Impact.

CONTEXT: Family caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers' communication experiences or the impact of these experiences on patients and caregivers at EOL. OBJECTIVES: Investigate cancer caregivers' communication experiences and potential impact on patient and caregiver outcomes. METHODS: Semistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes. RESULTS: Caregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating-often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers' and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers' abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement. CONCLUSION: Caregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients' communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.

The Grief of Parents After the Death of a Young Child.

Research demonstrates that severe forms of grief and grief-related pathology exist in the general population. Less attention, however, has been paid to the grief of parents following the death of a young, dependent child. In this review, we summarize a search of Pubmed, PsycINFO and Web of Science from 1995 to 2017, using the terms 'parental complicated grief', 'parental traumatic grief', and 'parent Prolonged Grief Disorder', specifically addressing parental grief and identified risk factors for complicated or prolonged grief. Forty-two studies met criteria and indicate a significant burden of complicated or prolonged grief in parents of children dying from virtually any cause. It appears that the empiric literature is undermined by great variability, including the composition of samples, the causes of death studied, the psychometric measures used, and post-loss intervals. We conclude that the uniform severity of grief experiences following the death of a young child is potentially a distinct subtype of grief, deserving of attention in its own right in future research and diagnostic formulations.

Advanced cancer as a risk for major depressive episodes.

OBJECTIVE: Major depression adversely affects health communication, quality of life, and survival in patients with advanced cancer. Prior research provides limited insight into how patients with advanced cancer differ from the general population in risk for developing a major depressive episode (MDE). This study aims to determine whether advanced cancer poses distinct risks for initial and recurrent MDEs. METHODS: Advanced cancer patients (N = 628) from Coping with Cancer were compared with propensity-weighted general population controls (N = 9282) from the National Comorbidity Survey Replication. RESULTS: Patients with advanced cancer were more likely than comparisons to have an initial MDE [OR = 27.3, 95% CI = (14.8-50.4); p < 0.001] but no more likely than comparisons to have a recurrent MDE [OR = 1.5, 95% CI = (0.9-2.6); p = 0.160]. Nearly two thirds (64.4%) of current MDEs in patients were initial onset; the vast majority (91.8%) of current MDEs in comparisons were recurrent. CONCLUSIONS: Advanced cancer increases risk of an initial MDE but appears not to enhance risk of a recurrent MDE. This suggests the importance of screening widely for depression in patients with advanced cancer as opposed to targeting screening to presumably high-risk subgroups of those with psychiatric histories.

Gender differences in the evolution of illness understanding among patients with advanced cancer.

BACKGROUND: Patient understanding of advanced metastatic disease is central to decisions about care near death. Prior studies have focused on gender differences in communication style rather than on illness understanding. OBJECTIVES: : To evaluate gender differences in terminal illness acknowledgement (TIA), understanding that the disease is incurable and the advanced stage of the disease. To evaluate gender differences in patients' reports of discussions of life expectancy with oncology providers and its effect on differences in illness understanding. METHODS: Coping with Cancer 2 patients (N = 68) were interviewed before and after a visit with their oncology providers to discuss scan results. RESULTS: At the prescan interview, there were no statistically significant gender differences in patient measures of illness understanding. At the postscan interview, women were more likely than men to recognize that their illness was incurable (Adjusted Odds Ratio, [AOR] = 5.29; P = .038), know that their cancer was at an advanced stage (AOR = 6.38; P = .013), and report having had discussions of life expectancy with their oncologist (AOR = 4.77; P = .021). Controlling discussions of life expectancy, women were more likely than men to report that their cancer was at an advanced stage (AOR = 9.53; P = .050). Controlling for gender, discussions of life expectancy were associated with higher rates of TIA (AOR = 4.65; P = .036) and higher rates of understanding that the cancer was incurable (AOR = 4.09; P = .085). CONCLUSIONS: Due largely to gender differences in communication, women over time have a better understanding of their illness than men. More frequent discussions of life expectancy should enhance illness understanding and reduce gender differences.