Specialty Palliative Care and Symptom Severity and Control in Adolescents and Young Adults With Cancer

Abstract

ImportanceAdolescents and young adults (AYAs) with cancer experience substantial symptom burden. Specialty palliative care (SPC) is recommended but often not involved or involved late.ObjectivesTo determine whether patient-reported symptom severity was associated with subsequent SPC involvement and whether SPC was associated with symptom improvement in AYAs with cancer.Design, Setting, and ParticipantsThis cohort study comprised AYAs (aged 15-29 years) with primary cancer diagnosed between January 1, 2010, and June 30, 2018, in Ontario, Canada. Data, including self-reported Edmonton Symptom Assessment System (ESAS) scores, were obtained from health care databases. Specialty palliative care was identified through billing codes and validated algorithms. Final data analysis was performed on April 4, 2023.Main Outcomes and MeasuresAssociations of ESAS scores with subsequent SPC involvement were determined. A difference-in-differences approach was used for patients who died within 5 years of their cancer diagnosis. Case patients (SPC predeath, index date equals first SPC service) were matched 1:1 to control patients (no SPC at equivalent time before death). The study examined whether the difference between 90-day postindex and preindex mean ESAS scores was itself different between case and control patients.ResultsThis study included 5435 AYAs with cancer, with a median follow-up of 5.1 (IQR, 2.5-7.9) years for analyses of general palliative care. Their median age at cancer diagnosis was 25 (IQR, 22-27) years, and more than half were male (2809 [51.7%]). For all symptoms, moderate and severe ESAS scores were associated with an increased likelihood of SPC involvement compared with mild scores. The greatest magnitude of association was seen for pain scores (hazard ratio for severe vs mild, 7.7 [95% CI, 5.8-10.2]; P < .001). A total of 721 AYAs (13.3%) died within 5 years of diagnosis, and 612 of these patients (84.9%) had received SPC before death. Among 202 case-control pairs, SPC involvement was associated with improved pain trajectories (mean scores improved from 3.41 to 3.07 in case patients and worsened from 1.86 to 2.16 in control patients; P = .003). Other symptom trajectories were not affected.Conclusions and RelevanceIn this cohort study of AYAs with cancer, those reporting moderate or severe symptoms through a screening program were more likely to subsequently receive SPC. These findings suggest that SPC was associated with a subsequent decrease in pain severity but did not affect other symptoms. New interventions targeting other symptoms during treatment and particularly at the end of life are needed.

Longitudinal adherence to surveillance for late effects of cancer treatment: a population-based study of adult survivors of childhood cancer

“…We adhered to Statistics Canada’s recommendation not to report income quintiles in rural areas, owing to the variation of income within a single rural postal code, an approach that has been adopted by past studies. 25 – 28 …”

“…We adhered to Statistics Canada's recommendation not to report income quintiles in rural areas, owing to the variation of income within a single rural postal code, an approach that has been adopted by past studies. [25][26][27][28] Using the OHIP database, we identified all primary care physician and long-term follow-up clinic visits in the year before the start date of each surveillance lookback period. We categorized Johns Hopkins' Aggregated Diagnosis Groups (ADG) scores, representing measures of morbidity, 29,30 as none, low (1-5), intermediate (6)(7)(8)(9), and high (≥ 10).…”

Specialty Palliative Care for Adolescents and Young Adults With Cancer—Developmental Considerations and an Agenda for Future Research

“…This is an open access article distributed under the terms of the CC-BY License. Yet, it is always worth considering how we can improve current practice, so that fewer AYA who might benefit from palliative care miss out on receiving The findings from Gupta and colleagues 5 suggest an important role for the integration of systematic patient-reported outcome measures to prompt palliative care referrals as part of standard practice. We need research to test whether this kind of screening, linked with standardized prompts or time points for palliative care integration, enables symptoms to be addressed sooner and more effectively.…”

“…This analysis focused on palliative care only-with interdisciplinary, psychology, or allied health interventions not captured within this data set. Using linked health service data, Gupta and colleagues 5 showed that AYA who did not have their symptoms screened with the ESAS were less likely to receive palliative care involvement of any kind. AYA whose symptom screeners showed they had worse symptoms (moderate or severe) were most likely to be referred to palliative care.…”

“…Gupta and colleagues 5 noted the limitations for their analysis to examine the cumulative impact of specialist palliative care that may have transpired over time. Many health interventions require…”