scholarly journals Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives

2021 ◽  
Vol 19 (5) ◽  
pp. 528-533
Author(s):  
Jennifer W. Mack ◽  
Erin R. Currie ◽  
Vincent Martello ◽  
Jordan Gittzus ◽  
Asisa Isack ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Emotional Support ◽  
Poor Prognosis ◽  
Care Delivery ◽  
Qualitative Interviews ◽  
Adolescents And Young Adults ◽  
Eol Care

Background: Adolescents and young adults (AYAs; aged 15–39 years) with cancer frequently receive intensive measures at the end of life (EoL), but the perspectives of AYAs and their family members on barriers to optimal EoL care are not well understood. Methods: We conducted qualitative interviews with 28 bereaved caregivers of AYAs with cancer who died in 2013 through 2016 after receiving treatment at 1 of 3 sites (University of Alabama at Birmingham, University of Iowa, or University of California San Diego). Interviews focused on ways that EoL care could have better met the needs of the AYAs. Content analysis was performed to identify relevant themes. Results: Most participating caregivers were White and female, and nearly half had graduated from college. A total of 46% of AYAs were insured by Medicaid or other public insurance; 61% used hospice, 46% used palliative care, and 43% died at home. Caregivers noted 3 main barriers to optimal EoL care: (1) delayed or absent communication about prognosis, which in turn delayed care focused on comfort and quality of life; (2) inadequate emotional support of AYAs and caregivers, many of whom experienced distress and difficulty accepting the poor prognosis; and (3) a lack of home care models that would allow concurrent life-prolonging and palliative therapies, and consequently suboptimal supported goals of AYAs to live as long and as well as possible. Delayed or absent prognosis communication created lingering regret among some family caregivers, who lost the opportunity to support, comfort, and hold meaningful conversations with their loved ones. Conclusions: Bereaved family caregivers of AYAs with cancer noted a need for timely prognostic communication, emotional support to enhance acceptance of a poor prognosis, and care delivery models that would support both life-prolonging and palliative goals of care. Work to address these challenges offers the potential to improve the quality of EoL care for young people with cancer.

Prevalence and predictors of high-intensity end-of-life care among adolescents and young adults with cancer in Ontario: a population-based study using the IMPACT cohort.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 10559-10559
Author(s):  
Hallie Coltin ◽  
Adam Rapoport ◽  
Chenthila Nagamuthu ◽  
Nancy N. Baxter ◽  
Paul C. Nathan ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Young Adults ◽  
End Of Life ◽  
Rural Areas ◽  
High Intensity ◽  
Early Period ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Eol Care ◽  
The Impact

10559 Background: End-of-life (EOL) care in adolescents and young adults (AYA) with cancer is poorly characterized, though this group may be at risk of elevated rates of high-intensity (HI) care and consequently, increased EOL suffering. Few population-based studies exist, and are limited by incomplete clinical information. AYA care patterns can vary by locus of care (LOC – pediatric v. adult), but LOC disparities in AYA EOL care are unstudied. Methods: We conducted a retrospective decedent population-based cohort study of all Ontario AYA diagnosed between 15-21 years of age with 6 prevalent primary cancers between 1992-2012, who died ≤5 years from diagnosis. Chart-abstracted clinical data were linked to health services data. The primary composite outcome (HI-EOL care) included any of: intravenous chemotherapy ≤14 days from death; > 1 emergency department visit ≤30 days from death; or > 1 hospitalization or intensive care unit (ICU) admission ≤30 days from death. Secondary outcomes included measures of the most invasive (MI) EOL care: mechanical ventilation ≤14 days from death, and death in the ICU. Factors associated with HI-EOL were examined. Results: Of 483 patients, 292 (60.5%) experienced HI-EOL care, 98 (20.3%) were mechanically ventilated ≤14 days from death, and 110 (22.8%) died in the ICU. Patients with hematological malignancies (v. solid tumors) were at greatest risk of HI-EOL care (OR, 2.3; 95CI, 1.5-3.5, p < 0.01), mechanical ventilation (OR, 5.4; 95CI, 3.0-9.7, p < 0.01), and death in an ICU (OR, 4.9; 95CI, 2.8-8.5, p < 0.01). AYA who died in a pediatric center were substantially more likely to experience MI-EOL measures compared to those dying in adult centers (mechanical ventilation, OR 3.2, 95CI 1.3-7.6, p = 0.01). Assessment of interactions showed LOC-based disparities widening over the study period (ICU death in pediatric v. adult centres: early period OR 0.9, 95CI 0.3-2.9, p = 0.91; late period OR 3.3, 95CI 1.2-9.2, p = 0.02; interaction term p = 0.04). AYA living in rural areas were also at higher risk of experiencing mechanical ventilation (OR, 2.0; 95CI, 1.0-3.8, p = 0.04) and death in ICU (OR, 2.1; 95CI, 1.1-4.0, p = 0.02). Conclusions: AYA with cancer experience high rates of HI-EOL care, with patients in pediatric centers and those living in rural areas at highest risk of MI-EOL care. Our study is the first to identify LOC-based disparities in AYA EOL care. Future studies should explore mechanisms underlying these disparities, including potential differences in palliative care services.

Care at the end of life during the COVID-19 pandemic: A CancerLinQ Discovery (CLQD) analysis.

2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 310-310
Author(s):  
Gabrielle Betty Rocque ◽  
Mark Riffon ◽  
Electra D. Paskett ◽  
Abdul-Rahman Jazieh ◽  
Jennifer C. King ◽  
...  
Keyword(s):  
End Of Life ◽  
Care Delivery ◽  
Geographic Region ◽  
Outpatient Services ◽  
Patients With Cancer ◽  
Clinical Encounters ◽  
Hispanic Patients ◽  
Vulnerable Patient ◽  
Eol Care

310 Background: For patients with cancer approaching end-of-life (EOL) during the COVID-19 pandemic, the changes in service availability and transition to telehealth may impact care delivery. Little is known about how the COVID-19 pandemic impacted EOL encounters with the healthcare system, particularly for vulnerable patient populations. Methods: This retrospective cohort study included patients with cancer who died from 1/2019-9/2020 in the CLQD electronic health record-based dataset. Descriptive statistics were generated for demographic characteristics and for clinical encounters (telehealth/in person/no encounter) in the last 3 months of life (EOL) among patients deceased in the year. Results were stratified by age, race, ethnicity, and geographic region. Results: Among the 49,688 deceased patients, 27% were under 65, 29% were 65-74, and 44% were 75+. The majority were Non-Hispanic White, with 5% Hispanic, 12% Black. In 2020, patients who were age 75+, White, Non-Hispanic, and/or living in the Midwest or Northeast had lower rates of in person encounters and higher rates of no encounter at EOL than those <65, Black, Hispanic, and/or living in the South (Table). Telehealth use at EOL increased from 2019 to 2020, with highest use amongst those in the West and Hispanic patients (Table). Conclusions: During the pandemic, telehealth use was limited at EOL compared to the 14% reported use for all cancer patients (data not shown). Black and Hispanic patients had slightly higher provider encounters at EOL, which may be due to differences in intensity of EOL care or death capture within the database. Further research is needed to evaluate the quality of EOL care and to assess opportunities to leverage telehealth where patients are unable to access outpatient services.[Table: see text]

Patterns of intensity of end-of-life care for adolescents and young adults with cancer: A population-based study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 132-132 ◽  
Author(s):  
Emily E. Johnston ◽  
Elysia Marie Alvarez ◽  
Olga Saynina ◽  
Lee Sanders ◽  
Smita Bhatia ◽  
...  
Keyword(s):  
Young Adults ◽  
End Of Life ◽  
Solid Tumors ◽  
Health Planning ◽  
Hematologic Malignancies ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Secondary Neoplasms ◽  
Factors Associated ◽  
Eol Care

132 Background: Cancer is the leading cause of non-accidental death amongst adolescents and young adults (AYA), aged 15-39, in the U.S. It is critical to understand end of life (EOL) care of AYA cancer decedents, including use of medically intense interventions like intubation. Although desired by some, most patients prefer a natural death. We sought to determine rates of medically intense interventions at end of life for AYA cancer decedents and associated factors. Methods: Using the California Office of Statewide Health Planning and Development private administrative database linked to death certificates, we performed a retrospective population based analysis of patients aged 15-39 with cancer who died between 2000-2010. We used previously defined administrative codes indicative of intense EOL care: intubation, CPR, hospital re-admission, and ICU admission in the last 30 days of life, and location of death. The frequencies of each intense item were calculated and multivariate logistic regression was used to determine clinical (including treatment at specialty center vs non) and socio-demographic factors associated with each item and receipt of ≥ 2 items. Results: The 8,978 AYA cancer decedents were 46% non-Hispanic white, 29% Hispanic, 10% non-Hispanic black, 11% Asian; 21% had hematologic malignancies, 70% had solid tumors, and 9% had secondary neoplasms; 58% were hospitalized only at non-specialty centers in the last 6 months of life. 62% received ≥ 1 medically intense EOL care intervention, and 32% received > 2. Factors associated with > 2 intense EOL care interventions were: non-Hispanic black (OR 1.38, 95% CI 1.16-1.65), Hispanics (1.19, 1.06-1.35), Asians (1.30, 1.10-1.52); those sometimes (2.19, 1.87-2.56) or never (1.44, 1.26-1.65) seen at specialty centers; hematologic malignancies (1.77, 1.57-2.00 ref grp: solid tumors) whereas secondary malignancies were not associated with > 2 intense markers (0.68, 0.56-0.83). Conclusions: Nearly two-thirds of the AYA cancer decedents received medically intense EOL interventions and disparities exist in receipt of such care. Further research needs to determine if the disparities are due to healthcare system, patient preference, or other factors.

scholarly journals Caregiver perceptions of end-of-life care in patients with high-grade glioma

2020 ◽  
Vol 8 (2) ◽  
pp. 171-178
Author(s):  
John T Fortunato ◽  
Meredith Van Harn ◽  
Sameah A Haider ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Care Planning ◽  
High Grade ◽  
Life Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract Background Patients dying from high-grade gliomas (HGG) suffer from high symptom burden in the end-of-life (EoL) phase. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess caregiver perception on quality of EoL care of HGG patients. Methods Caregivers prospectively participated in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care (TIME survey). This validated survey assesses EoL care in areas such as physical comfort and emotional support, advance care planning, focus on the individual, attention to family, and coordination of care. The quality of EoL care was measured by domain scores (0 = care was always optimal, 1 = care was always suboptimal) or with a 0-10 scale. Results Of the 55 enrolled family caregivers, 44 completed the interview and rated the overall care high (8.90 ± 1.36/10), perceived that patients’ wishes were respected (9.46 ± 0.95) and that they died in dignity (9.65 ± 0.98). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16), and care coordination (0.11). Attention to family (0.25) needed improvement. Only 41% of caregivers were confident that they knew what to do at the time of death and 46% felt that the healthcare team did not provide them with someone to turn to in distress. Conclusions Caregivers reported high overall satisfaction with EoL HGG care, though attention to family and communication needed improvement. Focus should therefore be on improved caregiver communication to improve EoL care, caregiver burnout, and bereavement in HGG populations.

scholarly journals Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review

2021 ◽  
pp. 1-13
Author(s):  
Shih-Chun Lin ◽  
Mei-Chih Huang ◽  
Deni Yasmara ◽  
Huey-Lan Wuu
Keyword(s):  
Palliative Care ◽  
Young Adults ◽  
Length Of Stay ◽  
End Of Life ◽  
Adolescents And Young Adults ◽  
Place Of Death ◽  
Current Evidence ◽  
Cochrane Library ◽  
Medical Setting ◽  
Eol Care

Abstract Objective To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions. Method Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC. Results Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths. Significance of results Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.

scholarly journals QOLP-14. CAREGIVER PERCEPTIONS OF END OF LIFE CARE IN PATIENTS WITH HIGH GRADE GLIOMA

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi200-vi200
Author(s):  
John Fortunato ◽  
Lonni Schultz ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
High Grade ◽  
Life Care ◽  
Coordination Of Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract INTRODUCTION Patients dying from high-grade gliomas (HGG) often suffer from a high symptom burden in the end-of-life (EoL) phase. Since patients with HGG typically do not follow up with providers in the EoL phase, information about quality of life and symptom management is sparse. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess the quality of EoL care of HGG patients from the caregiver perspective. METHODS Caregivers participated in the Toolkit After-Death Bereaved Family Member Interview (TIME survey). This validated survey assesses EoL care by calculating “domain scores” (DS) in five different areas: 1) physical comfort and emotional support, 2) advance care planning, 3) focus on the individual, 4) attention to family, and 5) coordination of care. Caregivers also rated aspects of care using a 10 point Likert scale. RESULTS In a prospective study, 40 of 55 enrolled family caregivers completed the interview a median of 26 days after death. 68% of caregivers were female. DS indicate the quality of care. (0 = no opportunity to improve care, 1 = care was always sub-optimal). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16) and coordination of care (0.11). Attention to family (0.25) was not as well rated. Caregivers rated the overall care 8.90 ±1.36/10 on a 0–10 scale. CONCLUSIONS Caregivers reported a high overall satisfaction with EoL care provided, though attention to family could be improved. While previous research suggests the importance of good physician communication in allowing patients to die with dignity, more focus should be on the caregiver in the EoL phase to improve end of life care, caregiver burnout and bereavement.

Family Perspectives on End-of-Life Care at the Last Place of Care (DRAFT)

2018 ◽  
Author(s):  
Esmé Finlay ◽  
Erin FitzGerald
Keyword(s):  
End Of Life ◽  
Home Environment ◽  
Emotional Support ◽  
The United States ◽  
Coordinated Care ◽  
Care Outcomes ◽  
Medical Teams ◽  
Eol Care ◽  
Family Informants

Assessing quality of end-of-life (EOL) care is a challenging but essential task in hospice and palliative medicine. Patients die in diverse settings, and patients and families experience EOL care differently. Using a mortality follow-back methodology, this study assessed family/informants of patients who died in the United States in 2000. Informants were asked about EOL care outcomes, including whether patients received physical and emotional support, were treated with respect, received well-coordinated care, participated in shared decision-making with medical teams, and whether family received adequate information and support. The results showed that families of patients who died with hospice services were better supported and perceived that the decedents had fewer unmet needs, were more likely to be treated with respect, and received highly rated care. Patients and families who received hospice support in a home environment had better EOL care experiences than those who died in other settings.

Impact of Palliative Care Involvement on End-of-Life Care Patterns Among Adolescents and Young Adults With Cancer: A Population-Based Cohort Study

2021 ◽  
pp. JCO.20.03698
Author(s):  
Alisha Kassam ◽  
Abha Gupta ◽  
Adam Rapoport ◽  
Amirrtha Srikanthan ◽  
Rinku Sutradhar ◽  
...  
Keyword(s):  
Mechanical Ventilation ◽  
Palliative Care ◽  
Young Adults ◽  
End Of Life ◽  
Population Level ◽  
Hematologic Malignancies ◽  
Population Based ◽  
Adolescents And Young Adults ◽  
Eol Care ◽  
The Impact

PURPOSE Evidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AYAs with cancer in Ontario, Canada. A secondary aim was to evaluate the impact of PC physicians on the intensity of EOL care in AYAs. METHODS A retrospective decedent cohort of AYAs with cancer who died between 2000 and 2017 in Ontario, Canada, was assembled using a provincial registry and linked to population-based health care data. On the basis of previous studies, the primary composite measure HI-EOL care included any of the following: intravenous chemotherapy < 14 days from death, more than one emergency department visit, and more than one hospitalization or intensive care unit admission < 30 days from death. Secondary measures included the most invasive (MI) EOL care (eg, mechanical ventilation < 14 days from death) and PC physician involvement. We determined predictors of outcomes using appropriate regression models. RESULTS Of 7,122 AYAs, 43.8% experienced HI-EOL care. PC physician involvement (odds ratio [OR], 0.57; 95% CI, 0.51 to 0.63) and older age at death (OR, 0.60; 95% CI, 0.48 to 0.74) were associated with a lower risk of HI-EOL care. AYAs with hematologic malignancies were at highest risk for HI and MI-EOL care. PC physician involvement substantially reduced the odds of mechanical ventilation at EOL (OR, 0.36; 95% CI, 0.30 to 0.43). CONCLUSION A large proportion of AYAs with cancer experience HI-EOL care. Our study provides strong evidence that PC physician involvement can help mitigate the risk of HI and MI-EOL care in AYAs with cancer.

scholarly journals Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): study protocol of a randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Shosha H. M. Peersmann ◽  
Annemieke van Straten ◽  
Gertjan J. L. Kaspers ◽  
Adriana Thano ◽  
Esther van den Bergh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cognitive Behavioral Therapy ◽  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Behavioral Therapy ◽  
Cognitive Behavioral ◽  
Adolescents And Young Adults ◽  
Randomized Controlled

Abstract Background Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26–29%) and negatively impacts quality of life, fatigue, pain, and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months (n = 70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12–30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive and anxiety symptoms, and intervention acceptability. Discussion Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration NL7220 (NTR7419; Netherlands Trial register). Registered on 2 August 2018

Quality of life in adolescents and young adults with CHD is not reduced: a systematic review and meta-analysis

2015 ◽  
Vol 26 (3) ◽  
pp. 415-425 ◽  
Author(s):  
Morten Schrøder ◽  
Kirsten A. Boisen ◽  
Jesper Reimers ◽  
Grete Teilmann ◽  
Jesper Brok
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Young Adults ◽  
Meta Analysis ◽  
Adolescents And Young Adults ◽  
Analysis Model ◽  
Significant Difference ◽  
Newcastle Ottawa Scale ◽  
First Time

AbstractPurposeWe performed a systematic review and meta-analysis of observational studies assessing quality of life in adolescents and young adults born with CHD compared with age-matched controls.MethodsWe carried out a systematic search of the literature published in Medline, Embase, PsychINFO, and the Cochrane Library’s Database (1990–2013); two authors independently extracted data from the included studies. We used the Newcastle–Ottawa scale for quality assessment of studies. A random effects meta-analysis model was used. Heterogeneity was assessed using the I2-test.ResultsWe included 18 studies with 1786 patients. The studies were of acceptable-to-good quality. The meta-analysis of six studies on quality of life showed no significant difference – mean difference: −1.31; 95% confidence intervals: −6.51 to +3.89, I2=90.9% – between adolescents and young adults with CHD and controls. Similar results were found in 10 studies not eligible for the meta-analysis. In subdomains, it seems that patients had reduced physical quality of life; however, social functioning was comparable or better compared with controls.ConclusionFor the first time in a meta-analysis, we have shown that quality of life in adolescents and young adults with CHD is not reduced when compared with age-matched controls.

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