A Comparison of Young Adults With and Without Cancer in Concurrent Hospice Care: Implications for Transitioning to Adult Health Care
Oncology
Purpose: Concurrent hospice care provides important end-of-life care for youth under 21 years. Those nearing 21 years must decide whether to shift to adult hospice or leave hospice for life-prolonging care. This decision may be challenging for young adults with cancer, given the intensity of oncology care. Yet, little is known about their needs. We compared young adults with and without cancer in concurrent hospice care. Methods: Retrospective comparative design used data from 2011 to 2013 U.S. Medicaid data files. Decedents were included if they were 20 years of age, enrolled in Medicaid hospice care, and used nonhospice medical services on the same day as hospice care based on their Medicaid claims activity dates. Results: Among 226 decedents, 21% had cancer; more than half were female (60.6%), Caucasian (53.5%), non-Hispanic (77.4%), urban dwelling (58%), and had mental/behavioral disorder (53%). Young adults with cancer were more often non-Caucasian (68.7% vs. 40.4%), technology dependent (47.9% vs. 24.2%), had comorbidities (83.3% vs. 30.3%), and lived in rural (58.3% vs. 37.6%), southern (41.7% vs. 20.8%) areas versus peers without cancer. Those with cancer had significantly fewer live discharges from hospice (5.7 vs. 17.3) and sought treatment for symptoms more often from nonhospice providers (35.4% vs. 14.0%). Conclusions: Young adults in concurrent hospice experience medical complexity, even at end-of-life. Understanding care accessed at 20 years helps providers guide young adults and families considering options in adult-focused care. Clinical and demographic differences among those with and without cancer in concurrent care highlight needs for research exploring racial and geographic equity.
Mooney-Doyle K; Keim-Malpass J; Svynarenko R; Lindley LC
Journal of Adolescent and Young Adult Oncology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2021.0004" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0004</a>
Documentation of Palliative and End-of-Life Care Process Measures Among Young Adults Who Died of Cancer: A Natural Language Processing Approach
Oncology
Few studies have investigated palliative and end-of-life care processes among young adults (YAs), aged 18-34 years, who died of cancer. This retrospective study used a natural language processing algorithm to identify documentation and timing of four process measures in YA cancer decedents' medical records: palliative care involvement, discussions of goals of care, code status, and hospice. Among 2878 YAs, 138 had a recorded date of death. In this group, 54.3% had at least one process measure documented early (31-180 days before death), 18.0% had only late documentation of process measures (0-30 days), and 27.5% had none documented.
Poort H; Zupanc SN; Leiter RE; Wright AA; Lindvall C
Journal of Adolescent and Young Adult Oncology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2019.0040" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0040</a>
Advance Care Planning for Adolescents and Young Adults with Cancer: A Retrospective Case Note Audit from a Regional Specialist Center in the United Kingdom
Oncology
The extent of Advance Care Planning (ACP) among Adolescent and Young Adult (AYA) cancer patients is not well characterized. This retrospective case note audit scrutinized the records of all AYA patients (aged 16-25 years) known to a regional specialist center in the United Kingdom, and who died between 2013 and 2019, for evidence of ACP. Eighty-four patients were included. ACP was identified for 67% of patients. Sixty-four percent expressed a preferred place of death; actual place of death reflected this in 65% of cases. Creation of a bespoke document may help to standardize ACP and improve end-of-life care.
Murray H; Pettitt N; Tomas J
Journal of Adolescent and Young Adult Oncology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2020.0149" target="_blank" rel="noreferrer noopener">10.1089/jayao.2020.0149</a>
Evaluating Palliative Opportunities Across the Age Spectrum in Children and Adolescent Patients with Cancer
pediatric palliative care; age; end of life; palliative opportunity
Purpose: Adolescent patients with cancer experience unique stressors due to their developmental stage, with increased physical, emotional, and social distress. Palliative care (PC) serves an important role in pediatric cancer care. We examined "palliative opportunities," or events during a patient's cancer course where subspecialty PC would be warranted and compared opportunities between adolescents and younger patients. Methods: Patients from a single center, 0-18 years of age at cancer diagnosis, who died from January 1, 2012, to November 30, 2017, were included. In this secondary analysis, patients were divided into cohorts based on age at diagnosis: 0-12 and 13-18 years. Demographic, disease, and treatment data were collected. Descriptive statistics and modeling were performed. Number, type, and timing of palliative opportunities and PC consultation timing and reason were evaluated across cohorts. Results: Of the 296 patients included for analysis, 27.7% were 13-18 years (82/296) at diagnosis. Frequency of palliative opportunities did not differ by age (median 7.0 [interquartile range 4.0 and 10.0] in both cohorts). PC consultation occurred in 36.5% (108/296), with neither rate nor timing differing by age group. PC consultations in adolescents were more often for symptom management (pā=ā0.0001). Adolescent patients were less likely to have a do-not-resuscitate order placed before death (61.0%, 50/82) compared to younger patients (73.8%, 158/214, pā=ā0.03). Conclusion: Adolescent patients with cancer did not experience more palliative opportunities than younger patients in this cohort, although they often have challenging psychological, family, and social stressors that were not identified. Incorporating additional palliative opportunities could enhance identification of stress and symptoms in adolescents with cancer such that PC could be timed to meet their needs.
Labudde EJ; DeGroote NP; Ebelhar J; Massie AM; Allen KE; Castellino SM; Wasilewski-Masker K; Brock KE
Journal of Adolescent and Young Adult Oncology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2021.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0081</a>
Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients
Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for Healthcare Utilization, this study examined predisposing/enabling/need factors associated with hospice referral/enrollment among AYA patients diagnosed with cancer. Method(s): Data were drawn from medical records of AYA patients who died of cancer between January 2013 and December 2016 at three academic sites in the United States and were 15-39 years old at the time of death. Logistic regression was conducted (N=224). Result(s): Findings showed that hospice referral was strongly associated with hospice enrollment (odds ratio [OR]=69.68, p<0.0001). White patients were more likely to be referred to hospice care than non-White patients; the effect was, however, significant only among patients with private insurance (OR=3.44, p=0.040). Patients with public insurance were more likely to be referred to hospice than those with private insurance; the effect was, however, significant only among non-White patients (OR=5.66, p=0.005). Among those not receiving cancer treatment in the last month of life (LML), patients with hematologic malignancies were less likely to be referred to hospice than those with solid tumors (OR=0.19). Among patients with solid tumors, receiving cancer treatment in the LML lowered the odds of hospice referral (OR=0.50, p=0.043). Conclusion(s): Further research efforts are needed to investigate the role of race, insurance, cancer types, and treatments in hospice use among bigger samples of AYA patients diagnosed with cancer.
Noh H; Bui C; Mack JW
Journal of adolescent and young adult oncology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2021.0225" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0225</a>
Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Result(s): Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusion(s): Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.
Sisk BA; Keenan MA; Schulz GL; Bakitas M; Currie ER; Gilbertson-White S; Lindley LC; Roeland EJ; Mack JW
Journal of adolescent and young adult oncology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2021.0154" target="_blank" rel="noreferrer noopener">10.1089/jayao.2021.0154</a>
Palliative Care Referral Patterns for Adolescent and Young Adult Patients at a Comprehensive Cancer Center
palliative care; supportive care; cancer care continuum; referral patterns; symptom burden
Palliative care (PC) serves a valuable role throughout the disease trajectory for adolescents and young adults (AYAs) living with cancer. A 3-year retrospective chart review was performed to characterize AYA PC referral patterns in patients aged 18-39 years to identify strategies for improving PC access. Despite known benefits, AYA referrals to PC during oncologic treatment occurred only for a small percentage of eligible patients (8.4%), largely occurred in the inpatient setting (73%), and were more likely in specific cancer types with high symptom burden and/or poor survival, with the greatest penetrance noted in lung cancer (51%).
Lockwood B J; Ntukidem O L; Ehrman S E; Schnell P M; Klemanski D L; Bhatnagar B; Lustberg M
Journal of adolescent and young adult oncology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2020.0081" target="_blank" rel="noreferrer noopener">10.1089/jayao.2020.0081</a>
Identifying and Quantifying Adolescent and Young Adult Patient Preferences in Cancer Care: Development of a Conjoint Analysis-Based Decision-Making Tool
advance care planning; quality of life; end-of-life care; decision-making; communication; conjoint analysis
Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decision-making, and improved communication of their preferences with family members and the medical team will lead to increased provision of goal-concordant care and decreased intensity of EOL care. In this study, we describe the development of a novel tool that quantifies the relative importance of numerous factors considered by AYA patients with cancer, their parents, and health care providers when choosing between treatment options.
Snaman JM; Blazin L; Holder RL; Wolfe J; Baker JN
Journal of Adolescent and Young Adult Oncology
2018
<a href="http://doi.org/%2010.1089/jayao.2018.0116" target="_blank" rel="noreferrer noopener">10.1089/jayao.2018.0116</a>
Contributors and Inhibitors of Resilience Among Adolescents and Young Adults with Cancer
Purpose: Self-perceived resilience may enable coping and mitigate poor psychosocial outcomes among adolescent and young adult (AYA) patients with cancer. In order to inform the development of resilience-promoting interventions, we aimed to: (1) describe AYA patient-reported resilience and (2) identify AYA patient-reported contributors and inhibitors of resilience. Methods: The "Resilience in Adolescents and Young Adults with Cancer" study was a prospective longitudinal mixed-methods study. Consecutive Caucasian patients aged 14-25 years old enrolled 14-60 days following their diagnosis of cancer and completed one-on-one semi-structured interviews both at the time of enrollment and 3-6 months later. Constant comparative analyses identified salient themes describing modifiable contributors and inhibitors to patient-perceived resilience. Results: Seventeen patients (85% of those approached) enrolled in the study. The mean age was 17 years (SD=2.6) and 53% were female. All patient definitions of resilience inferred an ability to handle adversity. Five themes emerged as predominant contributors or inhibitors of resilience: (1) stress and coping; (2) goals, purpose, and planning; (3) optimism; (4) gratitude and meaning; and (5) connection and belonging. Merged analyses suggested that AYA resilience was a balance that may be enabled by promoting certain skills. Conclusion: AYA patients with cancer perceive resilience as a balance. Learned skills in stress management, goal-setting, and benefit-finding may empower AYAs during their cancer experience, in turn improving long-term psychosocial outcomes.
2014-12
Rosenberg AR; Yi-Frazier JP; Wharton C; Gordon K; Jones BL
Journal Of Adolescent And Young Adult Oncology
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jayao.2014.0033" target="_blank" rel="noreferrer">10.1089/jayao.2014.0033</a>
Trailblazers in Adolescent and Young Adult Oncology
Bleyer A; Albritton KH; Barr R; Lewis IJ; Sender LS
Journal Of Adolescent And Young Adult Oncology
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jayao.2011.1500" target="_blank" rel="noreferrer">10.1089/jayao.2011.1500</a>
Experiences of Parents and General Practitioners with End-of-Life Care in Adolescents and Young Adults with Cancer
Kaal SEJ; Kuijken NMJ; Verhagen CAHHVM; Jansen R; Servaes P; Van Der Graaf WTA
Journal Of Adolescent And Young Adult Oncology
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2015.0009" target="_blank" rel="noreferrer">10.1089/jayao.2015.0009</a>
Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis
To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore, it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end-of-life experiences and preferences for young adults with cancer and their informal carers.
Ngwenya N; Kenten C; Jones L; Gibson F; Pearce S; Flatley M; Hough R; Stirling LC; Taylor RM; Wong G; Whelan J
Journal Of Adolescent And Young Adult Oncology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2016.0055" target="_blank" rel="noreferrer">10.1089/jayao.2016.0055</a>
Advance Care Planning Discussions with Adolescent and Young Adult Cancer Patients Admitted to a Community Palliative Care Service: A Retrospective Case-Note Audit
Advance Care Planning; Cardiopulmonary Resuscitation; Do Not Resuscitate; End-of-life
PURPOSE: Adolescents and young adults (AYA) with cancer are a cohort requiring specialized healthcare models to address unique cognitive and physical challenges. Advance care planning (ACP) discussions likely warrant age-appropriate adaptation, yet, there is little Australian research data available to inform best practice for this group. The goal of this work is to inform future models of ACP discussions for AYA. METHODS: Retrospective medical record audit of AYA patients and an adult comparison group, diagnosed with a malignancy and referred to a community hospice service, in Western Australia, in the period between January 1, 2012 and December 1, 2015. Information was collected regarding end-of-life care discussions, documentation of agreed plan of care, and care received. RESULTS: Twenty-seven AYA and 37 adult medical records were reviewed. Eighteen (66.7%) AYA patients died at home, compared with 19 (51.4%) adults (p = 0.028). Desire to pursue all available oncological therapies, including clinical trials, was documented for 14 (51.9%) AYA patients compared with 9 (24.3%) of the adult group (p = 0.02). Eleven AYA patients (40.7%) received chemotherapy during the last month of life compared with two (5.4%) adults (p = 0.001). CONCLUSIONS: The results indicate that end-of-life care preferences for this unique cohort may differ from those of the adult population and need to be captured and understood. An ACP document incorporating a discussion regarding goals of care, preferred location of care, preference for place of death, and consent to future intervention, including cardiopulmonary resuscitation and prompts for review, could assist in pursuing this objective.
Fletcher S; Hughes R; Pickstock S; Auret K
Journal Of Adolescent And Young Adult Oncology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jayao.2017.0032" target="_blank" rel="noreferrer">10.1089/jayao.2017.0032</a>