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1.
Pediatr Radiol ; 54(5): 663-670, 2024 05.
Article in English | MEDLINE | ID: mdl-38326566

ABSTRACT

Effective communication is an important aspect of providing quality healthcare. Radiology staff may be called upon to communicate results, even when it is difficult. Simple, efficient communication models can be learned to reduce clinician distress and support patients and families through stressful times. These practical tips ensure essential communication elements are met, including assessing patient and family perspectives, clearly delivering medical information, responding with empathy, and collaborating around next steps. Models such as "Ask-Tell-Ask," "SPIKES," and "NURSE" can be used to disclose results, communicate serious news, and respond to emotion. Lastly, clinicians can also utilize "I wish… I worry… I wonder" statements to align with a patient's hopes and acknowledge a family's concerns, ultimately allowing healthcare professionals to support and guide families through challenging situations.


Subject(s)
Communication , Pediatrics , Professional-Family Relations , Humans , Truth Disclosure , Radiology , Physician-Patient Relations , Child
2.
J Natl Compr Canc Netw ; 21(12): 1243-1250, 2023 12.
Article in English | MEDLINE | ID: mdl-38081124

ABSTRACT

BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population. PATIENTS AND METHODS: This qualitative secondary analysis of semistructured interviews was conducted across 3 institutions and 1 online support community among AYA patients with advanced cancer, family caregivers, and health care providers who cared for living or recently deceased AYAs. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software for primary analysis, and previously coded excerpts were screened for references to QoL. Relevant excerpts were sorted into organizing domains. RESULTS: Participants included 23 AYA patients, 28 family caregivers, and 29 health care providers (including physicians, nurses, nurse practitioners, social workers, and psychologists). Four domains of QoL were identified: psychosocial and physical well-being, dignity, normalcy, and personal and family relationships. Within each domain there was agreement across AYAs, caregivers, and health care providers, with nuanced perspectives provided by AYAs of different ages. Personal and family relationships was the most frequently referenced domain of QoL among all participants. A common feature of each domain was that adaptation to current circumstances impacted perspectives on QoL. Patients valued active participation in the development of a care plan that supported these domains. CONCLUSIONS: AYAs with advanced cancer, their caregivers, and health care providers agree on several broad domains of QoL in this population. To provide high-quality, patient-centered care, care plans should integrate these domains to enable AYAs to maximize their QoL throughout their advanced cancer care.


Subject(s)
Neoplasms , Terminal Care , Humans , Adolescent , Young Adult , Quality of Life , Neoplasms/therapy , Neoplasms/psychology , Health Personnel , Caregivers/psychology
3.
Pediatr Blood Cancer ; 70(1): e30081, 2023 01.
Article in English | MEDLINE | ID: mdl-36377714

ABSTRACT

BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities across leukemia/lymphoma (LL), solid tumors (ST), and central nervous system (CNS) tumor groups. PROCEDURE: A priori, nine palliative opportunities were defined: disease progression/relapse, hematopoietic stem cell transplant, phase 1 trial enrollment, admission for severe symptoms, social concerns or end-of-life (EOL) care, intensive care admission, do-not-resuscitate (DNR) status, and hospice enrollment. A single-center retrospective review was completed on 0-18-year olds with cancer who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated from diagnosis to death and across disease groups. RESULTS: Included patients (n = 296) had LL (n = 87), ST (n = 114), or CNS tumors (n = 95). Palliative opportunities were more frequent in patients with ST (median 8) and CNS tumors (median 7) versus LL (median 5, p = .0005). While patients with ST had more progression/relapse opportunities (p < .0001), patients with CNS tumors had more EOL opportunities (p < .0001), earlier PC consultation, DNR status, and hospice enrollment. Palliative opportunities increased toward the EOL in all diseases (p < .0001). PC was consulted in 108 (36%) patients: LL (48%), ST (30%), and CNS (34%, p = .02). CONCLUSIONS: All children with cancer incur many events warranting PC support. Patients with ST and CNS tumors had more palliative opportunities than LL, yet received less subspecialty PC. Understanding palliative opportunities within each disease group can guide PC utilization to ease patient and family stress.


Subject(s)
Leukemia , Lymphoma , Neoplasms , Terminal Care , Child , Humans , Neoplasms/therapy , Palliative Care , Quality of Life , Recurrence , Retrospective Studies , Terminal Care/psychology , Infant, Newborn , Infant , Child, Preschool , Adolescent , Clinical Trials, Phase I as Topic
4.
Pediatr Blood Cancer ; 70(1): e30035, 2023 01.
Article in English | MEDLINE | ID: mdl-36308744

ABSTRACT

BACKGROUND: Adolescents and young adults (AYAs) with advanced cancer identify normalcy as an important component of quality end-of-life care. We sought to define domains of normalcy and identify ways in which clinicians facilitate or hinder normalcy during advanced cancer care. PROCEDURE: This was a secondary analysis of a qualitative study that aimed to identify priority domains for end-of-life care. Content analysis of semi-structured interviews among AYAs aged 12-39 years with advanced cancer, caregivers, and clinicians was used to evaluate transcripts. Coded excerpts were reviewed to identify themes related to normalcy. RESULTS: Participants included 23 AYAs with advanced cancer, 28 caregivers, and 29 clinicians. Participants identified five domains of normalcy including relationships, activities, career/school, milestones, and appearance. AYAs and caregivers identified that clinicians facilitate normalcy through exploration of these domains with AYAs, allowing flexibility in care plans, identification of short-term and long-term goals across normalcy domains, and recognizing losses of normalcy that occur during cancer care. CONCLUSIONS: AYAs with cancer experience multiple threats to normalcy during advanced cancer care. Clinicians can attend to normalcy and improve AYA quality of life by acknowledging these losses through ongoing discussions on how best to support domains of normalcy and by reinforcing AYA identities beyond a cancer diagnosis.


Subject(s)
Neoplasms , Quality of Life , Young Adult , Adolescent , Humans , Life Change Events , Neoplasms/therapy , Qualitative Research , Caregivers
5.
Curr Oncol Rep ; 24(2): 161-174, 2022 02.
Article in English | MEDLINE | ID: mdl-35061198

ABSTRACT

PURPOSE OF REVIEW: To summarize pediatric palliative care (PPC) research from 2016 to 2021 as it intersects with pediatric oncology and hematopoietic stem cell transplantation (HSCT). RECENT FINDINGS: Children and adolescents with cancer who receive PPC have improved quality of life (QOL), symptom burden, advance care planning discussions, rates of hospice enrollment, home deaths, and receive less intensive therapy at the end-of-life (EOL). Parents report improved QOL and preparation for EOL. Though barriers to PPC utilization exist, new clinical models, oncology team education, and growing family awareness are leading to culture change. PPC within pediatric oncology is considered a standard of care. Families are accepting of PPC, as most wish for their children to live as well as possible for as long as possible. Although PPC remains underutilized, PPC should work collaboratively with pediatric oncology and HSCT teams to improve QOL and EOL outcomes of patients with cancer and their families.


Subject(s)
Hematopoietic Stem Cell Transplantation , Hospice Care , Neoplasms , Terminal Care , Adolescent , Child , Humans , Neoplasms/therapy , Palliative Care , Quality of Life
6.
Support Care Cancer ; 30(1): 923-930, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34409499

ABSTRACT

PURPOSE: Pediatric palliative care (PPC) improves quality of life for children and adolescents with cancer. Little is known about disparities between different racial and ethnic groups in the frequency and timing of PPC referrals. We evaluated the impact of race and ethnicity on the frequency and timing of PPC referral after initiation of an embedded PPO clinic where no formal consultation triggers exist. METHODS: Patients with cancer between 0 and 25 years at diagnosis who experienced a high-risk event between July 2015 and June 2018 were eligible. Demographic, disease, and PPC information were obtained. Descriptive statistics and logistic regression were used to assess likelihood of receiving PPC services by race/ethnicity. RESULTS: Of 426 patients who experienced a high-risk event, 48% were non-Hispanic White, 31% were non-Hispanic Black, 15% were Hispanic of any race, and 4% were non-Hispanic Asian. No significant differences were found between race/ethnicity and age at diagnosis/death, sex, and diagnosis. PPC consultation (p = 0.03) differed by race. Non-Hispanic Black patients were 1.7 times more likely than non-Hispanic White patients to receive PPC after adjustment (p = 0.01). White patients spent less days in the hospital in the last 90 days of life (3.0 days) compared with Black (8.0), Asian (12.5), or Hispanic patients (14.0, p = 0.009) CONCLUSION: Disparities exist in patients receiving pediatric oncology and PPC services. Cultural tendencies as well as unconscious and cultural biases may affect PPC referral by race and ethnicity. Better understanding of cultural tendencies and biases may improve end-of-life outcomes for children and young adults with cancer.


Subject(s)
Hospice and Palliative Care Nursing , Neoplasms , Adolescent , Child , Ethnicity , Humans , Neoplasms/therapy , Palliative Care , Quality of Life , Young Adult
7.
Pediatr Blood Cancer ; 68(1): e28781, 2021 01.
Article in English | MEDLINE | ID: mdl-33089627

ABSTRACT

The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with life-threatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement.


Subject(s)
Neoplasms/therapy , Palliative Care/methods , Practice Guidelines as Topic/standards , Adolescent , Adult , Humans , Neoplasms/psychology , Young Adult
8.
Support Care Cancer ; 29(4): 1849-1857, 2021 Apr.
Article in English | MEDLINE | ID: mdl-32783177

ABSTRACT

BACKGROUND: Most pediatric palliative care (PPC) services are inpatient consultation services and do not reach patients and families in the outpatient and home settings, where a vast majority of oncology care occurs. We explored whether an embedded pediatric palliative oncology (PPO) clinic is associated with receipt and timing of PPC and hospital days in the last 90 days of life. METHODS: Oncology patients (ages 0-25) with a high-risk event (death, relapse/progression, and/or phase I/II clinical trial enrollment) between 07/01/2015 and 06/30/2018 were included. PPO clinic started July 2017. Two cohorts were defined: pre-PPO (high-risk event(s) occurring 07/01/2015-06/30/2017) and post-PPO (high-risk event(s) occurring 07/01/2017-06/30/2018). Descriptive statistics were performed; demographic, disease course, and outcomes variables across cohorts were compared. RESULTS: A total of 426 patients were included (pre-PPO n = 235; post-PPO n = 191). Forty-seven patients with events in both pre- and post-PPO cohorts were included in the post-PPO cohort. Mean age at diagnosis was 8 years. Diagnoses were evenly distributed among solid tumors, brain tumors, and leukemia/lymphoma. Post-PPO cohort patients received PPC more often (45.6% vs. 21.3%, p < 0.0001), for a longer time before death than the pre-PPO cohort (median 88 vs. 32 days, p = 0.027), and spent fewer days hospitalized in the last 90 days of life (median 3 vs. 8 days, p = 0.0084). CONCLUSION: A limited-day, embedded PPO clinic was associated with receipt of PPC and spending more time at home in patients with cancer who had high-risk events. Continued improvements to these outcomes would be expected with additional oncology provider education and PPO personnel.


Subject(s)
Hospice and Palliative Care Nursing/organization & administration , Neoplasms/therapy , Palliative Care/methods , Child , Female , Humans , Male
9.
J Pediatr Nurs ; 61: 454-456, 2021.
Article in English | MEDLINE | ID: mdl-34452795

ABSTRACT

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction).


Subject(s)
Hospice Care , Neoplasms , Terminal Care , Adolescent , Child , Communication , Death , Humans , Neoplasms/therapy , Palliative Care , Young Adult
10.
Pediatr Blood Cancer ; 67(10): e28363, 2020 10.
Article in English | MEDLINE | ID: mdl-32706495

ABSTRACT

BACKGROUND: Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown. METHODS: A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end-of-life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do-not-resuscitate status). A single-center retrospective review was conducted on patients aged 0-18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death. RESULTS: Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities. CONCLUSIONS: Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end-of-life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.


Subject(s)
Hospitalization/statistics & numerical data , Palliative Care/methods , Quality of Life , Referral and Consultation/statistics & numerical data , Resuscitation Orders/psychology , Sarcoma/therapy , Adolescent , Child , Child, Preschool , Female , Follow-Up Studies , Humans , Infant , Infant, Newborn , Male , Prognosis , Retrospective Studies , Survival Rate
13.
Pediatr Blood Cancer ; 63(3): 516-22, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26513237

ABSTRACT

BACKGROUND: Decisions about end-of-life care may be influenced by cultural and disease-specific features. We evaluated associations of demographic variables (race, ethnicity, language, religion, and diagnosis) with end-of-life characteristics (Phase I enrollment, do-not-resuscitate (DNR) orders, hospice utilization, location of death), and trends in palliative care services delivered to pediatric hematology, oncology, and stem cell transplant (SCT) patients. PROCEDURE: In this single-center retrospective cohort study, inclusion criteria were as follows: patients aged 0-35 who died between January 1, 2002 and March 1, 2014, and had been cared for in the pediatric hematology, oncology, and SCT divisions. The era of 2002-2014 was divided into quartiles to assess trends over time. RESULTS: Of the 445 included patients, 64% of patients had relapsed disease, 45% were enrolled in hospice, and 16% had received palliative care consultation. Patients with brain or solid tumors enrolled in hospice (P < 0.0001) and died at home more frequently than patients with leukemia/lymphoma (P < 0.0001). Patients who received Phase I therapy or identified as Christian/Catholic religion enrolled in hospice more frequently (P < 0.0001 and P = 0.03, respectively). When patient deaths were analyzed over quartiles, the frequency of DNR orders (P = 0.02) and palliative care consultation (P = 0.04) increased over time. Hospice enrollment, location of death, and Phase I trial enrollment did not change significantly. CONCLUSIONS: Despite increases in palliative care consultation and DNR orders over time, utilization remains suboptimal. No increase in hospice enrollment or shift in death location was observed. These data will help target future initiatives to achieve earlier discussions of goals of care and improved palliative care for all patients.


Subject(s)
Hematology/trends , Medical Oncology/trends , Pediatrics/trends , Stem Cell Transplantation/trends , Terminal Care/trends , Adolescent , Child , Child, Preschool , Demography , Female , Hospices/statistics & numerical data , Humans , Infant , Infant, Newborn , Leukemia/therapy , Lymphoma/therapy , Male , Palliative Care/statistics & numerical data , Religion , Resuscitation Orders
14.
J Pain Symptom Manage ; 67(3): 250-259.e5, 2024 Mar.
Article in English | MEDLINE | ID: mdl-38065424

ABSTRACT

CONTEXT: Pediatric palliative care (PPC) improves end-of-life (EOL) outcomes for children with cancer. Though PPC visits are the 'intervention' in studies focused on EOL care, the content of PPC visits within pediatric oncology is poorly understood. OBJECTIVES: This study aimed to understand the scope of PPC practice during visits for children with cancer and their families. METHODS: This was a retrospective cohort study of patients 0-27 years with cancer seen in PPC clinic within an academic pediatric oncology center between 2017 and 2022. During each PPC visit, documenting providers chose the domains discussed or managed (goals of care, symptom management, and care coordination with respective subdomains). Data was abstracted from the electronic health record, PPC clinic database, and Cancer Registry. The differences in frequency and addressed domains were analyzed by demographics, visit type, diagnosis group, and proximity to EOL. RESULTS: Across 351 patients, 1919 outpatient PPC visits occurred. Median domains were higher in visits <90 days vs. 91+ days from EOL (12.0 vs. 10.0; p < 0.0001); pain and hospice collaboration were particularly discussed closer to EOL. Psychological symptoms like anxiety (30.7% vs. 21.1%; p < 0.001) were addressed more in follow-ups than initial visits. Compared to brain tumor or leukemia/lymphoma visits, solid tumor visits addressed more symptom management subdomains, especially pain (79.9%; p < 0.0001). CONCLUSION: The scope of PPC practice is broad and varied. Each visit encompasses many subdomains, the most common being care coordination with oncology teams and helping patients/families cope with the disease. More domains were addressed in solid tumor visits and near EOL.


Subject(s)
Brain Neoplasms , Neoplasms , Terminal Care , Child , Humans , Retrospective Studies , Scope of Practice , Palliative Care/psychology , Neoplasms/therapy , Death , Pain
15.
J Pain Symptom Manage ; 68(1): 32-42.e1, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38561131

ABSTRACT

BACKGROUND AND AIMS: Telehealth can improve care for patients with progressive cancer enrolling in hospice. Coordinated telehealth visits (patient/family-hospital-hospice) may improve communication, satisfaction with and interdisciplinary hospice collaboration. This pilot examines the impact of three coordinated telehealth visits on these outcomes. METHODS: This is a prospective pilot study of 0-29-year-old patients with cancer initiating hospice care between 2021-2023. Adult patients, caregivers, oncology and palliative care clinicians, hospice nurses and administrators were surveyed about feasibility and acceptability with telehealth (Technology Acceptance Model 2) after first and third telehealth visits. Hospice satisfaction (Consumer Assessment of Healthcare Providers and Systems) was completed by caregivers after visit 3 and during bereavement. Healthcare professionals completed the Assessment of Interprofessional Team Collaboration Scale II (AITCS-II). Survey responses were summarized and differences in scores were analyzed. RESULTS: Of 40 eligible patients, 24 enrolled, 19 completed visit 1, and 13 completed visit 3. Fourteen caregivers and two adult patients completed visit 1 surveys; nine caregivers and two adult patients completed visit 3 surveys. Participants highly rated telehealth acceptability after visit 1 (Median: 4.5, IQR: 4.0-4.7) and 3 (Median: 4.4, IQR: 4.0-4.7). Hospice services were rated as highly satisfactory at visit 3 (Median: 4.0, IQR: 3.7-4.0) and during bereavement (Median: 3.7, IQR: 3.5-4.0). Healthcare professionals (n = 85 surveys) reported excellent interprofessional collaboration (Hospital clinicians median: 99/115 and hospice teams 111/115). CONCLUSIONS: Participants found coordinated telehealth visits to be feasible, acceptable, and satisfactory. Telehealth may be utilized as an acceptable alternative to clinic visits and fosters hospital-hospice collaboration.


Subject(s)
Hospice Care , Neoplasms , Telemedicine , Humans , Pilot Projects , Neoplasms/therapy , Female , Male , Adult , Prospective Studies , Hospice Care/methods , Young Adult , Adolescent , Child , Patient Satisfaction , Child, Preschool , Caregivers , Infant , Feasibility Studies , Infant, Newborn
17.
J Palliat Med ; 26(11): 1466-1473, 2023 11.
Article in English | MEDLINE | ID: mdl-37222727

ABSTRACT

Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.


Subject(s)
Neoplasms , Terminal Care , Humans , Child , Palliative Care , Retrospective Studies , Outpatients , Neoplasms/therapy , Referral and Consultation , Death
18.
Cancer Rep (Hoboken) ; 6(1): e1665, 2023 01.
Article in English | MEDLINE | ID: mdl-35792092

ABSTRACT

BACKGROUND: Transfusion of blood products is a necessary part of successful delivery of myelosuppressive regimens in pediatric cancer. There is a paucity of literature characterizing outcomes or management of pediatric patients with cancer when transfusion is declined. AIMS: The objective of this paper is to describe the clinical characteristics, care, and outcomes of patients with cancer at risk for declining transfusion. METHODS AND RESULTS: A retrospective cohort of patients aged 0-21 years with cancer managed at Children's Healthcare of Atlanta between 2006 and 2020 and with ICD-9 codes indicating risk of "transfusion refusal" or Jehovah's witness (JW) religion was identified. Demographics, disease, and management were abstracted. Descriptive statistics were performed to examine associations with transfusion receipt. Among 35 eligible patients identified as at risk for declining transfusion, 89% had primary guardians who identified as JW, and 45.7% identified as Black, non-Hispanic. Only 40% of guardians actively declined transfusion. Transfusion recipients had significantly lower hemoglobin (g/dl) and platelet counts (1000/µl) at initial presentation (9.6 vs. 11.9, p < .002 and 116.0 vs. 406.5, p = .001, respectively) and at nadir (5.9 vs. 8.7, p < .001 and ≤ 10 vs. 154, p < .001, respectively) than non-recipients. Legal intervention was required in 36.4% of those who ultimately received a transfusion. CONCLUSION: Among pediatric cancer patients whose medical record initially indicated a preference for no transfusion, 60% of guardians accepted blood products when prescribed for oncology care. Guidelines for systematic management and transfusion sparing approaches are needed to honor guardian's preferences when possible yet while maintaining equitable cancer outcomes in this population.


Subject(s)
Jehovah's Witnesses , Humans , Child , Retrospective Studies , Blood Transfusion
19.
JAMA Netw Open ; 6(8): e2328153, 2023 08 01.
Article in English | MEDLINE | ID: mdl-37556137

ABSTRACT

Importance: The patient-clinician therapeutic alliance is an important aspect of high-quality cancer care. However, components of the therapeutic alliance in adolescents and young adults (AYAs, aged 12-39 years) with cancer have not been defined. Objective: To identify components of and barriers to the therapeutic alliance between AYAs, caregivers, and clinicians from the perspective of all key stakeholders. Design, Setting, and Participants: In this qualitative study, semistructured in-depth interviews with patients, caregivers, and clinicians were conducted from 2018 to 2021 with no additional follow-up, with content analysis of resulting transcripts. Participants were recruited from Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an online cancer support community (Cactus Cancer Society). Eligible participants were English- or Spanish-speaking. Eligible patients were aged 12 to 39 years with stage IV or recurrent cancer. Eligible caregivers cared for an AYA living with advanced cancer or one who had died within 5 years. Eligible clinicians routinely provided care for AYAs with cancer. Main Outcomes and Measures: Perspectives on therapeutic alliance. Results: Interviews were conducted with 80 participants: 23 were patients (48% were female; 78% were White), 28 were caregivers (82% were female; 50% were White), and 29 were clinicians (69% were female; 45% were White). The mean (SD) age of patients was 29 (7.3) years. Interviews identified 6 components of therapeutic alliance: (1) compassion; (2) sense of connection; (3) clinician presence; (4) information sharing; (5) shared goals; and (6) individualization of care. While some domains were represented in prior models of therapeutic alliance, a unique domain was identified related to the need for individualization of the approach to care for AYA patients and their caregivers. Interviews also identified potential barriers to building the therapeutic alliance specific to the AYA population, including managing discordant needs between patients and caregivers and communication challenges at the end of life. Conclusions and Relevance: This study identified core components and barriers to building therapeutic alliance in the AYA advanced cancer population from the perspective of all the key stakeholders in the relationship. A novel component highlighting the need for individualization was identified. This model enables a deeper understanding of how to build therapeutic alliance in the AYA advanced cancer population, which may guide clinician training and facilitate improved care for this vulnerable population.


Subject(s)
Neoplasms , Therapeutic Alliance , Humans , Young Adult , Adolescent , Female , Male , Caregivers , Neoplasms/therapy , Communication
20.
J Natl Cancer Inst ; 114(6): 895-906, 2022 06 13.
Article in English | MEDLINE | ID: mdl-35262708

ABSTRACT

BACKGROUND: Pediatric cancer survivors often have pain, which may be managed with opioids. We examined the prevalence of opioid prescriptions, potential misuse, and substance use disorders (SUDs) among pediatric cancer survivors during the first year posttherapy. METHODS: Using MarketScan Commercial Database, we identified 8969 survivors (aged 21 years or younger at diagnosis) who completed cancer therapy in 2009-2018 and remained continuously enrolled for at least 1 year posttherapy and 44 845 age-, sex-, and region-matched enrollees without cancer as a comparison group. Outcomes included opioid prescriptions, any indicator of potential prescription opioid misuse, and SUDs within 1 year posttherapy. Outcomes were compared between survivors and noncancer peers in bivariate and adjusted analyses, stratified by off-therapy age (children: 0-11 years; adolescents: 12-17 years; young adults: 18-28 years). All statistical tests were 2-sided. RESULTS: A higher proportion of survivors than noncancer peers filled opioid prescriptions (children: 12.7% vs 2.0%; adolescents: 22.9% vs 7.7%; young adults: 26.0% vs 11.9%). In models adjusting for sociodemographic factors and health status, survivors remained 74.4%-404.8% more likely than noncancer peer to fill opioid prescriptions (P < .001). The prevalence of potential misuse or SUDs was low, with 1.4% of child, 4.7% of adolescent, and 9.4% of young adult survivors fulfilling at least 1 criterion; however, it was higher than noncancer peers (0.1%, 1.4%, and 4.3%, respectively). In adjusted models, the likelihood of potential misuse among survivors remained at least 2 times higher than that among noncancer peers (P < .001), and the difference in SUDs became nonstatistically significant. CONCLUSION: Statistically significantly higher rates of opioid prescriptions and potential misuse were found among pediatric cancer survivors within 1 year posttherapy as compared with peers without cancer.


Subject(s)
Cancer Survivors , Neoplasms , Opioid-Related Disorders , Adolescent , Analgesics, Opioid/therapeutic use , Child , Humans , Neoplasms/drug therapy , Neoplasms/epidemiology , Opioid-Related Disorders/epidemiology , Prescriptions , Survivors , Young Adult
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