Palliative care considerations and practices for adolescents and young adults with cancer

Upshaw, Naadira C.; Roche, Anna; Gleditsch, Katrina; Connelly, Erin; Wasilewski‐Masker, Karen; Brock, Katharine E.

doi:10.1002/pbc.28781

Cited by 16 publications

(18 citation statements)

References 69 publications

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“…41,42 Expansion-associated coverage gains may also translate to YAs' earlier use of palliative care to manage complex physical and psychological symptoms and improve quality of life, ultimately contributing to extending survival time, even in the setting of advanced-stage disease. 43,44 This mechanism is particularly relevant for patients with severe disease or with pre-existing comorbid conditions that complicate delivery of effective cancer treatment. 45 Furthermore, by reducing cost-related barriers to quality cancer care, expansion-associated insurance gains may mitigate financial distress, an independent driver of death among patients receiving cancer treatment.…”

Section: Discussionmentioning

confidence: 99%

Survival in Young Adults With Cancer Is Associated With Medicaid Expansion Through the Affordable Care Act

Shi

Mertens

et al. 2023

JCO

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PURPOSE Medicaid expansion through the Affordable Care Act (ACA) has been shown to improve insurance coverage and early diagnosis of cancer in young adults (YAs); whether these improvements translate to survival benefits remains unknown. We examined the association between Medicaid expansion under the ACA and 2-year overall survival among YAs with cancer. METHODS Using the National Cancer Database, we identified 345,413 YAs (age 18-39 years) diagnosed with cancer in 2010-2017. We applied the difference-in-differences (DD) method to estimate changes in 2-year overall survival after versus before Medicaid expansion in expansion versus nonexpansion states. RESULTS Among all YAs, 2-year overall survival increased more in expansion states (90.39% pre-expansion to 91.85% postexpansion) than in nonexpansion states (88.98% pre-expansion to 90.07% postexpansion), resulting in a net increase of 0.55 percentage points (ppt; 95% CI, 0.13 to 0.96). The expansion-associated survival benefit was concentrated in patients with female breast cancer (DD, 1.20 ppt; 95%CI, 0.27 to 2.12) when stratifying by cancer type and in patients with stage IV disease (DD, 2.56; 95%CI, 0.36 to 4.77) when stratifying by stage. In addition, greater survival benefit associated with Medicaid expansion was observed among racial and ethnic minoritized groups (DD, 1.01 ppt; 95% CI, 0.14 to 1.87) as compared with non-Hispanic White peers (DD, 0.41 ppt; 95% CI, –0.06 to 0.87) and among patients with a Charlson comorbidity score of ≥ 2 (DD, 6.48 ppt; 95% CI, 0.81 to 12.16) than those with a comorbidity score of 0 (DD, 0.44 ppt; 95% CI, 0.005 to 0.87). CONCLUSION Medicaid expansion under the ACA was associated with an improvement in overall survival among YAs with cancer, with survival benefits most pronounced among patients of under-represented race and ethnicity and patients with high-risk diseases.

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Section: Discussionmentioning

confidence: 99%

Survival in Young Adults With Cancer Is Associated With Medicaid Expansion Through the Affordable Care Act

Shi

Mertens

et al. 2023

JCO

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“…Twenty percent of patients presenting to an AYA-specific palliative care program reported a premorbid history of mental illness, with more than one-third endorsing clinically significant symptoms of anxiety and/or depression at their first clinic visit [ 54 ]. In the last month of life, AYAs most commonly endorse feelings of sadness, anxiety, fear of being alone, fear of dying, fear of pain, and guilt [ 55 ]. In addition to psychological symptoms, AYAs with advanced cancer also demonstrate a higher prevalence of complex pain and greater opioid usage when compared with older adults [ 55 ], further reflecting and contributing to overall symptom burden and total distress.…”

Section: Psychological Considerations At the End Of Lifementioning

confidence: 99%

“…In the last month of life, AYAs most commonly endorse feelings of sadness, anxiety, fear of being alone, fear of dying, fear of pain, and guilt [ 55 ]. In addition to psychological symptoms, AYAs with advanced cancer also demonstrate a higher prevalence of complex pain and greater opioid usage when compared with older adults [ 55 ], further reflecting and contributing to overall symptom burden and total distress.…”

Section: Psychological Considerations At the End Of Lifementioning

confidence: 99%

Psychological and Psychiatric Comorbidities in Youth with Serious Physical Illness

et al. 2022

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An estimated one in six children in the United States suffers from a mental disorder, including mood, anxiety, or behavioral disorders. This rate is even higher in children with chronic medical illness. This manuscript provides a concise review of the symptoms that comprise mental conditions often observed in children with chronic illness or at the end of life. It further provides some guidance to help clinicians distinguish normative from pathological presentations. Evidence-based psychotherapy interventions, potentially applicable to the acute inpatient setting, are briefly summarized. Broad recommendations are made regarding both psychotherapeutic as well as pharmacotherapeutic interventions, with a review of common or serious medication side effects. Finally, delirium recognition and management are summarized.

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“…Palliative care (PC) is an essential part of cancer care that should be integrated into treatment early in the disease course . Multiple studies have highlighted unique challenges in delivering PC to AYAs, given different developmental and psychosocial needs . Even among AYAs with cancer who die, PC is often not involved or involved late despite observed benefits such as a decreased likelihood of high-intensity care .…”

Section: Introductionmentioning

confidence: 99%

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

Gupta,

Li,

Kassam

et al. 2023

JAMA Netw Open

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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 &lt; .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.

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Palliative care considerations and practices for adolescents and young adults with cancer

Cited by 16 publications

References 69 publications

Survival in Young Adults With Cancer Is Associated With Medicaid Expansion Through the Affordable Care Act

Survival in Young Adults With Cancer Is Associated With Medicaid Expansion Through the Affordable Care Act

Psychological and Psychiatric Comorbidities in Youth with Serious Physical Illness

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

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