The Effect of Specialized Palliative Care on End-of-Life Care Intensity in AYAs with Cancer

Jewitt, Natalie; Rapoport, Adam; Gupta, Abha; Srikanthan, Amirrtha; Sutradhar, Rinku; Luo, Jin; Widger, Kimberley; Wolfe, Joanne; Earle, Craig C.; Gupta, Sumit; Kassam, Alisha

doi:10.1016/j.jpainsymman.2022.11.013

Cited by 6 publications

(7 citation statements)

References 59 publications

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“…For example, in a population-based Ontario decedent AYA cohort, PC involvement was associated with a 40% decrease in the odds of experiencing a composite measure of high-intensity EOL care and with a 65% decrease in the odds of mechanical ventilation at the EOL . Specialty PC involvement has been associated with decreased odds of high-intensity interventions, even compared with GPC …”

Section: Discussionmentioning

confidence: 99%

“… 13 Specialty PC involvement has been associated with decreased odds of high-intensity interventions, even compared with GPC. 35 …”

Section: Discussionmentioning

confidence: 99%

“…13 Specialty PC involvement has been associated with decreased odds of high-intensity interventions, even compared with GPC. 35 Although symptom control has been described as an essential component of PC and is a common reason for PC referrals, 9 it is still unclear whether PC involvement reduces symptom severity. Two systematic reviews examined the association between PC and symptom control among adults with various conditions.…”

Section: Jama Network Open | Oncologymentioning

confidence: 99%

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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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Section: Discussionmentioning

confidence: 99%

“… 13 Specialty PC involvement has been associated with decreased odds of high-intensity interventions, even compared with GPC. 35 …”

Section: Discussionmentioning

confidence: 99%

Section: Jama Network Open | Oncologymentioning

confidence: 99%

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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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“…Pediatric oncology nurses often find themselves walking the fine line between giving hope and explaining the reality of the situation (Dos Santos et al, 2023). This ethical dilemma continues to be an area that requires more support and training for pediatric oncology nurses (Jewitt et al, 2023; Richoux et al, 2022). In addition, individual and environmental factors significantly influence end‐of‐life experiences and interactions in pediatric oncology (Joren et al, 2023; Hirata et al, 2023; Vassileva et al, 2023).…”

Section: Discussionmentioning

confidence: 99%

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end‐of‐life period: A photovoice qualitative study

Özdemir Koyu,

Algül,

Kilicarslan Törüner

2023

Nursing & Health Sciences

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Effective communication in end‐of‐life care for pediatric cancer patients is crucial. Yet, limited research focuses on the communication experiences of pediatric oncology nurses during this period. This study aims to investigate the communication experiences and needs of these nurses with children and their families during the end‐of‐life period. A qualitative study design with photo voice methodology was followed. The research was conducted with 16 pediatric oncology nurses working in the pediatric oncology wards of a university hospital between January and May 2023. Data were collected the “Characteristic Information Form”, “Semi‐Structured Interview Form”, and photovoice methodology. Data were analyzed through reflexive thematic analysis. Most of the nurses are at the undergraduate level, and their working experience in pediatric oncology wards ranges from 4 months to 17 years. Seven main themes emerged: Optimistic Communication‐Interaction, Mindfulness, Active Coping, Behavioral Actions, Death Uncertainty Dilemma, Interpersonal and Environmental Factors, and Discrepancy between Ideals and Reality. The study sheds light on the importance of pediatric oncology nurses' ideals versus realities upstream approach in communicating with end‐of‐life children and their families, empowering pediatric oncology nurses on the journey to ideal end‐of‐life care.

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“…PC has been associated with lower medical intensity of end-of-life care for AYAs with cancer in multiple observational studies. [60][61][62][63] A single-institutional study of AYAs with cancer who died in the hospital found that PC consults more than 1 day before death were associated with fewer ICU deaths, more documentation of family meetings, more do not resuscitate orders, and longer overall survival. 64 Examination of existing PC programs found that AYAs were frequently anxious about receiving PC when it was first introduced, but they appreciated it once they started receiving services.…”

Section: Evidence For Pc In Ayas With Cancermentioning

confidence: 99%

Palliative Care in Adolescents and Young Adults With Cancer

Johnston,

Rosenberg

2024

JCO

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Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.

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The Effect of Specialized Palliative Care on End-of-Life Care Intensity in AYAs with Cancer

Cited by 6 publications

References 59 publications

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

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

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end‐of‐life period: A photovoice qualitative study

Palliative Care in Adolescents and Young Adults With Cancer

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