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1.
J Pediatr ; 271: 114038, 2024 Mar 28.
Artigo em Inglês | MEDLINE | ID: mdl-38554745

RESUMO

OBJECTIVE: To determine which groups of children with cancer for whom to apply the newly developed quality measures (QMs) for end-of-life (EOL) care. STUDY DESIGN: In a series of nominal groups, panelists answered the question: "Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?" In each group, individual panelists proposed answers to the question. After collating individual responses, each panelist ranked their 5 top answers and points were assigned (5 pts for the best answer, 4 pts the second best, etc.). A team of pediatric oncology and palliative care clinician-scientists developed and applied a coding structure for responses and associated themes and subthemes for responses. RESULTS: We conducted 5 nominal groups with a total of 44 participants. Most participants identified as female (88%) and non-Hispanic White (86%). Seventy-nine percent were clinicians, mainly in pediatric palliative care, pediatric oncology, or hospice; 40% were researchers and 12% were bereaved parents. Responses fell into 5 themes: (1) poor prognosis cancer; (2) specific treatment scenarios; (3) certain populations; (4) certain symptoms; and (5) specific utilization scenarios. Poor prognosis cancer and specific treatment scenarios received the most points (320 pts [49%] and 147 pts [23%], respectively). CONCLUSIONS: Participants developed a framework to identify which children should be included in EOL QMs for children with cancer. The deliberate identification of the denominator for pediatric QMs serves as a potent tool for enhancing quality, conducting research, and developing clinical programs.

2.
J Pediatr ; 268: 113930, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38309525

RESUMO

OBJECTIVE: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. STUDY DESIGN: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. RESULTS: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. CONCLUSIONS: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.


Assuntos
Disparidades em Assistência à Saúde , Doenças do Sistema Nervoso , Cuidados Paliativos , Encaminhamento e Consulta , Humanos , Cuidados Paliativos/estatística & dados numéricos , Masculino , Feminino , Estudos Retrospectivos , Encaminhamento e Consulta/estatística & dados numéricos , Criança , Disparidades em Assistência à Saúde/etnologia , Disparidades em Assistência à Saúde/estatística & dados numéricos , Pré-Escolar , Doenças do Sistema Nervoso/terapia , Doenças do Sistema Nervoso/etnologia , Lactente , Estados Unidos , Adolescente , Negro ou Afro-Americano/estatística & dados numéricos , Fatores Socioeconômicos , Medicaid/estatística & dados numéricos , Racismo
3.
J Pediatr ; 261: 113598, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37402439

RESUMO

OBJECTIVE: To characterize symptom frequency and symptom-directed treatment approaches in patients who died with advanced Duchenne muscular dystrophy (DMD). STUDY DESIGN: This was a retrospective cohort study of patients in a multidisciplinary DMD program who died between January 1, 2013, and June 30, 2021. Inclusion criteria were patients who died with advanced DMD in the time period studied; exclusion criteria were low exposure to palliative care (<2 encounters). Demographic, symptom, and end-of-life data, as well as medications used for symptom management, were abstracted from the electronic medical record. RESULTS: In total, 15 patients were eligible for analysis. The median age of death was 23 years (range 15-30 years). One (6.7%) experienced a full code at death, 8 (53.3%) had do-not-resuscitate orders, and 4 (26.7%) had limited do-not-resuscitate orders. Mean palliative care exposure was 1280 days. All 15 (100%) had pain and dyspnea; 14 (93.3%) anorexia, constipation, and sleep difficulty; 13 (86.7%) wounds; and 12 (80%) anxiety and nausea/vomiting. Multiple medications and drug classes were used to target symptoms. CONCLUSIONS: We found significant polysymptomatology and polypharmacy in patients who died with advanced DMD. Clinicians who care for patients with advanced DMD should clarify goals of care and document advance care planning. Given the complexity of multisystem disease progression, palliative care should provide subspecialty pain management and assist with psychosocial burdens.


Assuntos
Distrofia Muscular de Duchenne , Humanos , Adolescente , Adulto Jovem , Adulto , Distrofia Muscular de Duchenne/tratamento farmacológico , Distrofia Muscular de Duchenne/diagnóstico , Estudos Retrospectivos , Polimedicação , Cuidados Paliativos , Morte
4.
J Perinatol ; 43(7): 889-894, 2023 07.
Artigo em Inglês | MEDLINE | ID: mdl-37005452

RESUMO

OBJECTIVE: Perinatal palliative care (PPC) is the coordinated application of palliative care principles to the care of families, fetuses and newborns with suspected life-limiting conditions. This approach relies on continuity of care that spans pregnancy, birth and beyond. The goal of this retrospective cohort study was to evaluate outcomes and PPC continuity in infants born to families who received PPC at a quaternary care pediatric hospital, and to identify targets to improve care continuity. STUDY DESIGN: PPC patients seen between July 2018 and June 2021 were identified via local PPC registry. Demographic, outcome, and continuity data were gathered from the electronic medical record. Descriptive statistics were used to calculate the rate of postnatal palliative consult and infant mortality rates. RESULTS: 181 mother-infant dyads were identified as having a PPC consultation and had available data following birth. Overall perinatal mortality was 65%; 59.6% of all liveborn infants died prior to discharge. Only 47.6 % of liveborn infants, who did not die in the perinatal period, received postnatal palliative care. Location of birth (primary versus non-network hospital) was significantly associated with postnatal PPC consult rate (p = 0.007). CONCLUSION: Continuation of palliative care after birth in families who received perinatal palliative care is inconsistently achieved. Creating reliable systems for PPC continuity will depend on location of care.


Assuntos
Hospitais Pediátricos , Cuidados Paliativos , Lactente , Gravidez , Feminino , Criança , Humanos , Recém-Nascido , Estudos Retrospectivos , Cuidado Pré-Natal , Assistência Perinatal , Feto
5.
J Pain Symptom Manage ; 65(5): e483-e495, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36736860

RESUMO

Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined, 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities, 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures, 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement, and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Criança , Humanos , Cuidados Paliativos/métodos , Qualidade da Assistência à Saúde , Política de Saúde
6.
Pediatrics ; 150(6)2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-36437228

RESUMO

BACKGROUND AND OBJECTIVES: Children with complex chronic conditions (CCCs) and their families deserve high-quality pediatric palliative care (PPC) throughout their illness trajectory, including at end of life (EOL). Standard EOL quality measures (QM) have only recently been proposed, require surveys and/or manual chart review, and focus on children with cancer. Therefore, we aimed to develop expert-endorsed, hospital-based, primary PPC quality measures for EOL care for all children with CCCs that could be automatically abstracted from the electronic health record (EHR). METHODS: We followed a modified Delphi approach for expert opinion gathering, including: (1) a comprehensive literature review of existing adult and pediatric measures (>200 measures); (2) formation of a multidisciplinary expert panel (n = 9); (3) development of a list of candidate measures (20 measures); (4) national survey to assess each QM's importance and abstraction feasibility and propose new measures (respondents = 95); and (5) final expert panel endorsement. RESULTS: Seventeen EHR-abstractable QM were endorsed in 5 domains: (1) health care utilization: 4 measures (eg, <2 emergency department visits in the last 30 days of life); (2) interprofessional services: 4 measures (eg, PPC in the last 30 days of life); (3) medical intensity: 5 measures (eg, death outside the ICU); (4) symptom management: 2 measures (eg, documented pain score within 24 hours of admission); and (5) communication: 2 measures (eg, code status documentation). CONCLUSIONS: This study developed a list of EHR-abstractable, hospital-based primary PPC EOL QM, providing a foundation for quality improvement initiatives and further measure development in the future.


Assuntos
Cuidados Paliativos , Assistência Terminal , Adulto , Humanos , Criança , Qualidade de Vida , Qualidade da Assistência à Saúde , Hospitais
7.
J Pain Symptom Manage ; 64(3): e123-e131, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35577143

RESUMO

CONTEXT: Children with serious illness deserve high-quality pediatric palliative care (PPC). With expansion of PPC provision, it is important to understand the quality improvement (QI) activities of PPC clinicians and programs. OBJECTIVES: To describe the 1) background, education/training, and activities in QI and 2) perceived barriers to QI efforts among PPC clinicians and programs nationally. METHODS: An electronic survey was sent to members of the Pediatric Palliative Improvement Network, the National Coalition for Hospice and Palliative Care Pediatric Task Force, and the PPC Research Network as part of a study to develop hospital-based, primary PPC quality measures. Surveys queried participants' background, education/training, individual/team QI efforts, and barriers to QI work. Results were summarized descriptively. RESULTS: Of the 95 respondents; most were female (84 [88%]) and/or white (84 [88%]). The majority (57 [54%]) were physicians, although participants represented a variety of clinical disciplines, researchers (10 [9%]), and administrators (6 [6%]). One-quarter (25 [26%]) reported having <10 hours total of training in QI, yet two-third (63 [66%]) participated in QI work. About one-third (35 [37%]) reported that their program had no dedicated staff for QI activities, yet over half (56 [59%]) of participants reported that their team participated in QI work. Participants reported that lack of personnel/time, standardized measures/tools, education/training/mentoring in QI, systems to promote QI work, and financing/grants were barriers. CONCLUSION: Over half of PPC participants in this study reported involvement in QI activities despite limited staffing/time, QI training, and standardized measures, which presents challenges to this work.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Criança , Feminino , Humanos , Masculino , Cuidados Paliativos , Melhoria de Qualidade , Inquéritos e Questionários
8.
Curr Oncol Rep ; 24(8): 961-973, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35353347

RESUMO

PURPOSE OF REVIEW: Approximately 15,600 children are diagnosed with cancer annually. Many of these children have cancer-related pain that improves with cancer treatment, but some develop intractable pain from cancer progression or sequelae from treatment modalities. The purpose of this paper is to provide a critical evaluation of the literature relevant to pain management in children with cancer. We intend to emphasize important and up-to-date findings in pharmacology, interventional pain management, and complementary and alternative medicine. RECENT FINDINGS: Alternative medications and routes of administration, complementary and alternative medicine techniques, and interventional pain procedures offer possible routes for a multi-pronged pediatric cancer pain management plan, although high-level data is often lacking. To improve pediatric cancer pain management, a multifaceted approach embracing the biopsychosocial model of pain is recommended, incorporating evidence-based pharmacology, complementary and alternative medicine techniques, and if needed, interventional pain procedures.


Assuntos
Dor Crônica , Terapias Complementares , Neoplasias , Criança , Humanos , Neoplasias/complicações , Neoplasias/terapia , Dor/etiologia , Manejo da Dor/métodos
10.
J Pain Symptom Manage ; 63(1): 131-139, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34186121

RESUMO

CONTEXT AND OBJECTIVES: Although multiple national organizations have created consensus guidelines and metrics for pediatric palliative care (PPC), standardized implementation and measurement has been challenging. In 2016, 6 PPC physician-experts in program development and quality improvement (QI) formed a healthcare learning collaborative network entitled the Pediatric Palliative Improvement Network (PPIN). METHODS: The primary drivers identified were 1) Feasibility of a national learning network demonstrated through the completion of one small QI project, 2) Standard education in QI methodology and 3) Salient pediatric palliative care operational, clinical and satisfaction metrics clearly defined. RESULTS: PPIN now includes146 members representing 51 organizations. In 2019 the group completed a national collaborative QI project focused on pain assessment at the time of initial consult, demonstrating a national increase in pain assessment from 75.8% to >90% over 12 months. PPIN has hosted two national QI workshops training more than 50 PPC clinicians in QI, with a 2-hour webinar provided in 2020 due to COVID. Monthly calls since 2017 provide QI methods "refreshers", share local works in progress, and provide infrastructure for future collaborative projects. CONCLUSIONS: PPIN has become a sustainable organization which improves the quality of PPC through focus on national QI methods training, successful collaborative projects, and the creation of a learning and peer support community with regular calls. With the advent of the Palliative Care Quality Collaborative in 2020, PPIN provides critical educational and organizational infrastructure to inform ongoing quality efforts in PPC, now and in the future.


Assuntos
COVID-19 , Cuidados Paliativos , Criança , Atenção à Saúde , Humanos , Melhoria de Qualidade , SARS-CoV-2
11.
J Palliat Med ; 24(11): 1725-1731, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34726519

RESUMO

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.


Assuntos
Planejamento Antecipado de Cuidados , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Criança , Comunicação , Humanos , Lactente , Cuidados Paliativos , Pais , Adulto Jovem
12.
Pediatrics ; 148(1)2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34183362

RESUMO

BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.


Assuntos
Administração Hospitalar , Cuidados Paliativos/organização & administração , Esgotamento Profissional , Criança , Número de Leitos em Hospital , Humanos , Corpo Clínico Hospitalar/psicologia , Cuidados Paliativos/normas , Equipe de Assistência ao Paciente , Admissão e Escalonamento de Pessoal , Qualidade da Assistência à Saúde , Sistema de Registros , Estados Unidos
13.
J Palliat Med ; 24(11): 1689-1696, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34160293

RESUMO

Background: The COVID-19 pandemic has spurred unprecedented need for specialty palliative care. The Palliative Care Quality Collaborative (PCQC) provides unique infrastructure for rapid data collection and analysis. Objectives: To capture and describe real-time, real-world experiences of specialty palliative care professionals caring for patients with COVID-19 through a rapid reporting tool and registry. Setting: Palliative care clinicians consulted for patients either positive for COVID-19, under investigation for COVID-19, or recovered from COVID-19. Design: The PCQC created a 13-item COVID-19 case report form (CRF), modeled after the PCQC core dataset for specialty palliative care quality measurement. Twelve items offered discrete answer choices and one was open-ended. The CRF was publicized widely (e.g., social media, e-mail list serves) and completed through a link on the PCQC website. Results: Three hundred six reports (298 adult, 8 pediatric) were submitted between April 6, 2020 and October 7, 2020. The majority of patients (83%) were 50 years or older; 25% were 80 or older, and 78% were COVID-19 positive. Male gender identity was significantly more prevalent than female (58% vs. 40%, p < 0.002). The most common comorbidity was cardiovascular disease (23%). Of adult hospital-based patients, 69% were full code before palliative care consultation versus 28% after (p < 0.05). All pediatric patients were full code before and after palliative care consult. Qualitative themes were strained communication with patients, family visitation challenges, communication barriers between clinicians and families, rapid changes in palliative care medical management, community care options difficult to find, lack of testing in community-based settings, and guardianship and legal challenges. Conclusion: Preliminary data from the first 306 patients reported to the PCQC COVID-19 Registry describe palliative care use concentrated among older and higher risk patients and challenges to the provision of palliative care during this pandemic.


Assuntos
COVID-19 , Cuidados Paliativos , Adulto , COVID-19/terapia , Criança , Feminino , Humanos , Masculino , Pandemias
14.
J Pediatr ; 225: 152-156, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32532649

RESUMO

OBJECTIVE: To describe the demographic and clinical characteristics of a cohort of patients referred to pediatric hospice and home-based palliative care (HBPC) programs across Ohio in 2016. STUDY DESIGN: Retrospective cohort study of patients referred to hospice/HBPC from 3 pediatric palliative care programs in Ohio in 2016. Demographic and clinical data were extracted from the medical record and analyzed with descriptive statistics. RESULTS: There were 209 patients referred: 49 (24%) to hospice and 160 (77%) to HBPC. The most common diagnoses were genetic/chromosomal syndromes (23%), neurologic or neurodegenerative conditions (23%), and cancer (21%). Durable medical equipment use was frequent (85%), with gastrostomy or jejunostomy tubes (22%) the most common. Most patients (64%) retained full-code resuscitation status. Fifty-seven patients (27%) died before July 1, 2018: 37 in hospice (18% of the overall cohort, 65% of decedents) and 20 in HBPC (10% of the overall cohort, 35% of decedents). Sixty-seven percent of hospice and 40% of HBPC patients died at home. CONCLUSIONS: Pediatric hospice and HBPC programs serve a diverse cohort of patients. Patients referred to pediatric HBPC programs commonly die and are likely to die at home despite not being enrolled in hospice care. The high proportion of decedent HBPC patients indicates that the notion of hospice vs palliative care may present a false dichotomy in many children with life-limiting conditions. Reimbursement models for HBPC should reflect the clinical similarity to hospice in the care of children with life-limiting illnesses.


Assuntos
Serviços de Assistência Domiciliar/organização & administração , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos/métodos , Adolescente , Criança , Pré-Escolar , Doença Crônica/mortalidade , Estudos de Coortes , Feminino , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Masculino , Ohio/epidemiologia , Cuidados Paliativos/estatística & dados numéricos , Estudos Retrospectivos
15.
J Palliat Med ; 23(6): 767-776, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-31880492

RESUMO

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective: The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Methods: This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Results: Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusions: Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Criança , Humanos , Ohio , Cuidados Paliativos , Pais
16.
J Palliat Med ; 22(10): 1289-1292, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31058565

RESUMO

A 14-year-old girl with a history of complex congenital heart disease in end-stage heart failure and with cyclic vomiting was admitted to our hospice program in 2012. Before hospice enrollment, she had required intermittent infusions of dexmedetomidine to abort cyclic vomiting episodes after cardiac catheterization procedures. Following a hospital admission in November 2013, she was discharged home in the care of our hospice on a continuous dexmedetomidine infusion. She remained on this infusion at varying doses (range of 0.1-0.38 mcg/kg/hour) for nearly three years, until her death in September 2016. This report describes the palliative use of dexmedetomidine in this patient and difficulties related to the use of this medication during the course of her care.


Assuntos
Dexmedetomidina/uso terapêutico , Cardiopatias Congênitas/complicações , Hipnóticos e Sedativos/uso terapêutico , Cuidados Paliativos/métodos , Vômito/tratamento farmacológico , Adolescente , Feminino , Cardiopatias Congênitas/terapia , Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Humanos
17.
J Adolesc Young Adult Oncol ; 8(4): 417-422, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31013460

RESUMO

Background: Location of death (LOD) is an important aspect of end-of-life (EOL) care. Adolescents and young adults (YAs) with pediatric malignancies are increasingly treated in pediatric institutions. YAs, generally defined as 18-39 years old, deserve specific attention because adults have unique developmental and social considerations compared with younger patients. Objective: The goal of this retrospective cohort study was to understand the effect of treatment by a pediatric oncology program on EOL experiences for YAs. Specifically, we examined LOD, hospice, and palliative care (PC) involvement in a cohort of YAs who died of cancer in a large, quaternary care pediatric hospital. Methods: This was a retrospective cohort study of patients ≥18 years of age, who died of cancer between January 1, 2010, and December 31, 2017. Standardized data were abstracted from the institutional cancer registry and the electronic medical record. Results: YAs in this cohort more commonly died in the hospital (54.9%). Lack of hospice involvement and the presence of a documented do-not-resuscitate (DNR) order were significantly associated with inpatient death. The majority of patients had long-standing PC involvement (95.8%, median 318 days), a DNR order (78.9%), and had enrolled in hospice care (60.6%) before death. Conclusions: These results suggest that a significant proportion of YAs with cancer remain inpatient for EOL care. Pediatric oncologists and PC teams may benefit from additional training in the unique psychosocial needs of YAs to optimize EOL care for these older patients.


Assuntos
Comportamento de Escolha , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Hospitais Pediátricos/estatística & dados numéricos , Neoplasias/mortalidade , Neoplasias/terapia , Assistência Terminal/estatística & dados numéricos , Adolescente , Adulto , Feminino , Seguimentos , Mortalidade Hospitalar , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Cuidados Paliativos/estatística & dados numéricos , Prognóstico , Estudos Retrospectivos , Adulto Jovem
18.
J Palliat Med ; 21(10): 1414-1435, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-29957100

RESUMO

BACKGROUND: In 2017, the Ohio Pediatric Palliative Care and End-of-Life Network (OPPEN) published nine domains of high-quality care for pediatric home-based hospice and palliative care (HBHPC). Eight domains established by the National Consensus Project (NCP) were validated for pediatric HBHPC, and a ninth domain of "Continuity and Coordination of Care" was added. OBJECTIVE: The aim of this study was to establish definition criteria for each of these domains. DESIGN AND SETTING: Using a modified Delphi technique, providers from the OPPEN were surveyed regarding definitions drawn from the NCP domain criteria. For the ninth domain, new definition criteria were generated de novo based on qualitative responses. RESULTS: Definition criteria were established for the nine domains of quality in HBHPC previously identified. In the course of analysis, Bereavement Care was established as a 10th domain of quality, and definition criteria generated. CONCLUSIONS: This is the first study to define domains of quality for pediatric HBHPC, and the second to leverage the infrastructure of a pediatric HPC statewide consortium toward this work. Future studies are needed to establish parent and patient-prioritized domains of quality in pediatric HBHPC, and to map indicators validated in pediatrics to these domains.


Assuntos
Atitude do Pessoal de Saúde , Serviços de Assistência Domiciliar/normas , Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos/normas , Pediatria/normas , Qualidade da Assistência à Saúde/normas , Assistência Terminal/normas , Consenso , Técnica Delphi , Humanos , Ohio
19.
J Palliat Med ; 21(3): 290-296, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-28937333

RESUMO

BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. OBJECTIVES: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC). DESIGN: Mixed methods design. SETTING/SUBJECTS: Providers from the Ohio Pediatric Palliative Care and End-of-life Network. MEASUREMENTS: Using a modified Delphi technique, providers were surveyed regarding the NCP quality domains for HPC. RESULTS: There was strong consensus on the applicability of each domain to the participants' practices (median scores ranged from 0.97 to 1.0 with interquartile ranges = 0). Consensus on the rank importance of the eight domains was not achieved. Qualitative data included challenges with NCP domain 3 (Psychological and Psychiatric Aspects of Care). It was recommended that titles should remain consistent with adult standards, but domain definitions should be broadened for pediatric HBHPC. Continuity and coordination of care should be added as a ninth domain of quality in pediatric HBHPC. CONCLUSIONS: All eight NCP domains were validated in pediatric HBHPC. A ninth domain, Continuity and Coordination of Care, was also added. Ranking the domains was not recommended as consensus indicated weighting them as equally integrated standards. Future studies are needed to evaluate parent- and patient-prioritized domains of quality in pediatric HBHPC and to validate and map pediatric-specific indicators to these domains.


Assuntos
Serviços de Assistência Domiciliar/normas , Cuidados Paliativos na Terminalidade da Vida/normas , Cuidados Paliativos/normas , Qualidade da Assistência à Saúde , Criança , Técnica Delphi , Humanos , Ohio
20.
Pediatrics ; 139(1)2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27980029

RESUMO

BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system to risk stratify patients for opioid misuse. METHODS: The global aim was safe opioid prescribing by the palliative care team. The specific, measurable, achievable, realistic, and timely aim was as follows: "In patients who present for follow up with PACT, we will use the "opioid bundle" to increase risk stratification for opioid misuse from 0% to 90% over 5 months." The opioid bundle includes a urine drug screen, Ohio Automated Rx Reporting System report, pill count, and screening history for drug abuse and mental health disorders. The setting was multiple CCHMC ambulatory clinics. Participants included all PACT members. RESULTS: Since implementing the new system, we have increased risk stratification for opioid misuse among outpatients from 0% to >90%. Results have been sustained for 12 months. Key processes have become reliable: obtaining informed consent and controlled substance agreements for all new patients and obtaining the opioid bundle to enable risk stratification in a consistent and timely fashion. A total of 34% of patients have been stratified as high risk, and an additional 27% have been stratified as moderate risk. CONCLUSIONS: A system to ensure safe opioid prescribing practices to all patients is critical for providers. Identifying key processes and executing them reliably has enabled the palliative care team at CCHMC to risk stratify >90% of patients receiving opioids in the ambulatory setting for opioid misuse.


Assuntos
Analgésicos Opioides/toxicidade , Analgésicos Opioides/uso terapêutico , Uso Indevido de Medicamentos sob Prescrição/prevenção & controle , Uso Indevido de Medicamentos sob Prescrição/estatística & dados numéricos , Melhoria de Qualidade/organização & administração , Medição de Risco/organização & administração , Adolescente , Criança , Feminino , Cuidados Paliativos na Terminalidade da Vida , Hospitais Pediátricos , Humanos , Masculino , Ohio , Cuidados Paliativos , Desvio de Medicamentos sob Prescrição/prevenção & controle , Desvio de Medicamentos sob Prescrição/estatística & dados numéricos , Centros de Atenção Terciária , Adulto Jovem
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