Advancing pediatric palliative care in a low-middle income country: an implementation study, a challenging but not impossible task.
ABSTRACT: BACKGROUND:The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for adults, leaving the pediatric population unaddressed. Examples of such services are scarce and should be portrayed in scientific literature to inform decision-makers and service providers on models of care available to tackle the burden of Pediatric Palliative Care (PPC) in Low-and middle-income countries (LMIC). The purpose of this study is to describe the implementation of a pediatric palliative care program, "Taking Care of You" (TCY), in a tertiary care, university hospital in Cali, Colombia. METHODS:A program's database was built with children between 0 to 18?years old and their families, from year 2017 to 2019. Descriptive analysis was carried out to evaluate the impact of the program and service delivery. A theory-based method was directed to describe the PPC program, according to the implementation of self-designed taxonomy, mapping theoretical levels and domains. Clinical outcomes in patients were included in the analysis. RESULTS:Since 2017 the program has provided PPC services to 1.965 children. Most of them had an oncologic diagnosis and were referred from hospitalization services (53%). The number of ambulatory patients increased by 80% every trimester between 2017 and 2018. A 50% increase was reported in hospitalization, emergency, and intensive care units during the same time period. CONCLUSIONS:The program addressed a gap in the provision of PPC to children in Cali. It shows effective strategies used to implement a PPC program and how the referral times, coordination of care, communication with other hospital services were improved while providing compassionate/holistic care to children with life-limiting and threatening diseases and in end-of-life. The implementation of this program has required the onset of specific strategies and arrangements to promote awareness and education proving it a hard task, yet not impossible.
Project description:CONTEXT:Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. OBJECTIVES:Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. METHODS:Funded through a U.S. $1.6 million National Institutes of Health/National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. RESULTS:The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. In addition, a one-day Professional Development Workshop was developed to teach EPEC-Pediatrics graduates, future "Trainers," thus becoming "Master Facilitators." Between 2012-May 2019, a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three Professional Development Workshops. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. Participants overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Trainers subsequently anticipated improvements in patient care for children with serious illness at their home institutions. CONCLUSION:EPEC-Pediatrics has developed into the most comprehensive PPC curriculum worldwide. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
Project description:Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care.A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis. Investigators in programs that had taken part in a prior study were invited to participate. New programs that met the inclusion criteria were identified through snowball sampling within pediatric palliative care networks. Program data were obtained via surveys with coinvestigators, and health record reviews were used to obtain information about the children who received care through the programs.All 13 programs identified, including 3 with a free-standing hospice, agreed to take part in the study. Of the 1401 children who received care, 508 (36.2%) were under 1 year of age, and 504 (36.0%) had a congenital illness or condition originating in the perinatal period. Of the 431 children who died in 2012, 105 (24.4%) died in a critical care setting. Programs with a hospice provided care to 517 children (36.9%). Children in this group tended to be older, more often had a neurologic illness and received care for a longer time than those who received care from programs without a hospice. Overall, 18.6% (95% confidence interval 17.1%-20.3%) of deceased children who might have benefitted from specialized pediatric palliative care based on diagnosis received such care, with 110 (25.2%) receiving care for less than 8 days.Program growth and changes in patients' demographic and clinical characteristics indicate improved reach of programs. However, barriers remain that prevent most children with life-threatening conditions from receiving specialized pediatric palliative care services.
Project description:Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in paediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children's Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented RP. This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (Pediatric Intensive Care Unit or home) influenced the development of resuscitation plans. Patients referred to the paediatric palliative care (PPC) service had a significantly longer time interval from documentation of a resuscitation plan to death and were more likely to die at home. All of the patients who died in the paediatric intensive care unit (PICU) had a RP that was documented within the last 48 h of life. Most RPs were not easy to locate. Documentation of discussions related to resuscitation planning should accommodate patient and family centered care based on individual needs. With varied diagnoses and settings of care, it is important that there is inter-professional collaboration, particularly involving PICU and PPC services, in developing protocols of how to manage this difficult but inevitable clinical scenario.
Project description:Background. There is a need for increased palliative care training during pediatric residency. Objective. In this pilot study, we created a comprehensive experiential model to teach palliative care skills to pediatric residents. Our Comfort Care Modules (CCMs) address pediatric palliative care (PPC) topics of breaking bad news, dyspnea, anxiety, pain management, and the dying child. We also evaluated a scoring system and gathered qualitative data. Methods. The CCMs are part of the University of California San Diego pediatric residency's second-year curriculum. Comparisons were made for statistical trends between residents exposed to the modules (n = 15) and those not exposed (n = 4). Results. Nineteen of 36 residents (52%) completed surveys to self-rate their preparedness, knowledge, and confidence about PPC before and after the intervention. Resident scores increased in all areas. All improvements reached statistical significance except confidence when breaking bad news. Overall, the resident feedback about the CCMs was positive. Conclusions. This study demonstrates that the CCMs can be performed effectively in an academic setting and can benefit residents' self-perception of preparedness, confidence, and knowledge about pediatric palliative care. In the future, we plan to implement the modules on a larger scale. We encourage their use in interprofessional settings and across institutions.
Project description:While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.
Project description:It is known that information regarding the quality of life of a patient is central to pediatric palliative care. This information allows professionals to adapt the care and support provided to children and their families. Previous studies have documented the major areas to be investigated in order to assess the quality of life, although it is not yet known what operational criteria or piece of information should be used in the context of pediatric palliative care. The present study aims to: 1) Identify signs of quality of life and evaluation methods currently used by professionals to assess the quality of life of children with cancer receiving palliative care. 2) Collect recommendations from professionals to improve the evaluation of quality of life in this context.We selected a qualitative research design and applied an inductive thematic content analysis to the verbal material. Participants included 20 members of the Department of Hematology-Oncology at CHU Sainte-Justine from various professions (e.g. physicians, nurses, psychosocial staff) who had cared for at least one child with cancer receiving palliative care in the last year.Professionals did not have access to pre-established criteria or to a defined procedure to assess the quality of life of children they followed in the context of PPC. They reported basing their assessment on the child's non-verbal cues, relational availability and elements of his/her environment. These cues are typically collected through observation, interpretation and by asking the child, his/her parents, and other members of the care. To improve the assessment of quality of life professionals recommended optimizing interdisciplinary communication, involving the child and the family in the evaluation process, increasing training to palliative care in hematology/oncology, and developing formalized measurement tools.The formulation of explicit criteria to assess the quality of life in this context, along with detailed recommendations provided by professionals, support the development of systematic measurement strategy. Such a strategy would contribute to the development of common care goals and further facilitate communication between professionals and with the family.
Project description:Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon.To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients.This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate.Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate.A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life.
Project description:Our objective was to evaluate children with metabolic diseases in paediatric palliative home care (PPC) and the process of decision-making. This study was conducted as single-centre retrospective cohort study of patients in the care of a large specialized PPC team.Between 01/2013 and 09/2016, 198 children, adolescents and young adults were in the care of our PPC team. Twenty-nine (14.6%) of these patients had metabolic conditions. Median age at referral was 2.6 years (0-24), median duration of care 352 days (3-2248) and median number of home visits 13 (1-80). Most patients are still alive (16; 55.2%). Median number of drugs administered was 5 (range 0-12), antiepileptics were given most frequently. Symptom burden was high in all children with metabolic disorders at referral and remained high throughout care. Predominant symptoms were gastrointestinal, respiratory and neurologic symptoms. Children with metabolic conditions, who were referred to PPC younger than 1 year of age had a shorter period of care and died earlier compared to those children, who were referred to PPC later in their lives (older than 10 years of age). Eleven (37.9%) of the children initially had no resuscitation restrictions and 7 (53.8%) of those who died, did so on ICU.About 15% of children with life-limiting conditions in PPC present with metabolic diseases. Symptom burden is high with neurologic, respiratory and gastrointestinal symptoms being the most frequent and most of those being difficult to treat. In these children, particular attention needs to be addressed to advance care planning.
Project description:BACKGROUND:The aim of this study was to explore expert professionals' opinions on service provision to children under six with life-limiting neurodevelopmental disabilities (LLNDD), including the goals of care and the integration and coordination of palliative care in general and specialist services. METHODS:A Delphi design was used with three questionnaire rounds, one open-ended and two closed response rounds. Primary data collected over a six-month period from expert professionals with five years' (or more) experience in pediatric, intellectual disability and/or palliative care settings. Ratings of agreement and prioritization were provided with agreement expressed as a median (threshold?=?80%) and consensus reported as interquartile ranges. Stability was measured using non-parametric tests. RESULTS:Primary goals of care were achievement of best possible quality of life, effective communication and symptom management. Service integration and coordination were considered inadequate, and respondents agreed that areas of deficiency included palliative care. Improvement strategies included a single care plan, improved communication and key worker appointments. CONCLUSIONS:The findings suggest that services do not serve this group well with deficiencies in care compounded by a lack of information on available services and sub-optimal communication between settings. Further research is needed to develop an expert-based consensus regarding the care of children with LLNDD.
Project description:BACKGROUND: Pediatric palliative care is a relatively new and evolving field, and the cost of pediatric palliative care programs is unclear. We conducted a systematic review to compare inpatient health care utilization and costs among children with life-threatening conditions who have accessed a pediatric palliative care program and those who have not. METHODS: We searched MEDLINE, Embase, CINAHL and LILACS databases from January 2000 to July 2013, as well as the grey literature, for experimental or observational studies that compared pediatric palliative care programs with usual care. Outcomes of interest included hospital admissions, length of stay and health care costs. RESULTS: Of the 5193 records identified, we reviewed 109 in full and included 11 in our study. The overall quality of the studies was moderate to low. We observed mixed results for all outcomes. Compared with patients receiving usual care, fewer patients in the palliative care group had hospital admissions and fewer of those with cancer had planned hospital admissions. In contrast, no effects were observed regarding the overall number of hospital, emergency or outpatient admissions. Conflicting results were observed with regards to critical care utilization. Studies showed a trend toward shorter lengths of stay in hospital in the palliative care group. However, a single study that also considered inpatient time in hospice facilities found an increase in total length of stay, which showed a shift in the setting of health care utilization. We observed no conclusive trend in the effects on cost. INTERPRETATION: Evidence suggests that pediatric palliative care programs may result in a shift of utilization to other health care settings beyond hospital care. These settings should be considered when measuring resource utilization and costs.