Kristina Newport

BACKGROUND: Most pediatric hospice patients receive services from agencies typically oriented to adults. Information regarding how pediatric hospice patients differ from adult hospice patients is lacking. OBJECTIVE: We aim to assess differences between pediatric and adult hospice patients regarding patient characteristics and outcomes. METHODS: We compiled a retrospective inception cohort of patients enrolled at nine hospices in the CHOICE network (Coalition of Hospices Organized to Investigate Comparative Effectiveness) between August 1, 2008 and June 30, 2012. Measurements included patient characteristics and outcomes, including discharge from hospice and site of death. RESULTS: Among 126,620 hospice patients, 986 (0.8%) were 18 years of age or younger. Pediatric patients were less likely to have an admitting diagnosis of cancer (odds ratio [OR] 0.62; 95% confidence interval [CI]: 0.54-0.72). Although children were less likely to use oxygen at enrollment (OR 0.31; 95% CI: 0.26-0.37), they were more likely to have an enteral feeding tube (OR 4.04; 95% CI: 3.49-4.67). Pediatric patients were half as likely as adults to have a do-not-resuscitate order (DNR) order upon hospice enrollment (OR 0.52; 95% CI: 0.46-0.59). The average hospice length of stay for pediatric patients was longer than that of adults (103 days versus 66 days, p<0.001). Children were more likely to leave hospice care (OR 2.59; 95% CI: 2.00-3.34), but among patients who died while enrolled in hospice, pediatric patients were more likely to die at home (OR 3.25; 95% CI: 2.27-3.88). CONCLUSIONS: Pediatric hospice patients differ from adult patients in their broader range of underlying diagnoses and their use of hospice services.

PURPOSE: Early integration of outpatient palliative care (OPC) benefits patients with advanced cancer and also the health care systems in which these patients are seen. Successful development and implementation of models of OPC require attention to the needs and values of both the patients being served and the institution providing service. SUMMARY: In the 2016 clinical guideline, ASCO recommended integrating palliative care early in the disease trajectory alongside cancer-directed treatment. Despite strong endorsement and robust evidence of benefit, many patients with cancer lack access to OPC. Here we define different models of care delivery in four successful palliative care clinics in four distinct health care settings: an academic medical center, a safety net hospital, a community health system, and a hospice-staffed clinic embedded in a community cancer center. The description of each clinic includes details on setting, staffing, volume, policies, and processes. CONCLUSION: The development of robust and capable OPC clinics is necessary to meet the growing demand for these services among patients with advanced cancer. This summary of key aspects of functional OPC clinics will enable health care institutions to evaluate their specific needs and develop programs that will be successful within the environment of an individual institution.

PURPOSE: Several studies have demonstrated that patients have a poor understanding of prognosis, survival, and effectiveness of chemotherapy, particularly in the setting of advanced cancer. This study examines oncology patients' understanding of their illness based on accurate reporting of stage at diagnosis and knowledge of cancer status (ie, free of cancer or in remission v active disease). MATERIALS AND METHODS: Two hundred eight patients with cancer previously treated at our large community-based cancer institute participated in the Consumer-Based Cancer Care Value Index field survey. Electronic medical record documentation of stage at diagnosis and cancer status was compared with patients' self-reported responses. Concordance of responses and variables influencing discordance were evaluated. RESULTS: In 51.0% of patients, self-reported cancer stage matched the abstracted stage, with the highest concordance in patients with advanced cancer (72%) versus patients with stage I to III disease (36.4% to 61.5%). Unexpectedly, discordance was lower among patients with advanced cancer compared with patients with stage I to III cancer ( P = .0528). Patients who were concordant for cancer stage at diagnosis were significantly more likely to be female ( P = .001), be younger than age 65 years ( P = .01), have an income > $60,000 ( P = .03), and have more education ( P = .02). In 64.4% of patients, self-reported cancer status (ie, free of cancer or in remission v active disease) matched the abstracted status. Nearly 30% of patients were not sure about their status, even when they were free of cancer or in remission. CONCLUSION: Our findings confirm that more than one quarter of patients with advanced cancer have poor illness understanding and highlight that an even greater number of patients with early stage I to III cancer have poor illness understanding. These observations highlight the need to improve illness understanding for patients across the entire cancer continuum.