Most Children With Medical Complexity Do Not Receive Care in Well-Functioning Health Care Systems
children with special health care needs community pediatrics medical home
OBJECTIVES: To describe the access of children with medical complexity (CMC) to well-functioning health care systems. To examine the relationships between medical complexity status and this outcome and its component indicators. PATIENTS AND METHODS: Secondary analysis of children in the National Survey of Children's Health combined 2016-2017 data set who received care in well-functioning health systems. Secondary outcomes included this measure's component indicators. The χ(2) analyses were used to examine associations between child and family characteristics and the primary outcome. Adjusted multivariable logistic regression was used to examine relationships between medical complexity status and primary and secondary outcomes. Using these regression models, we examined the interaction between medical complexity status and household income. RESULTS: CMC accounted for 1.6% of the weighted sample (n = 1.2 million children). Few CMC (7.6%) received care in a well-functioning health care system. CMC were significantly less likely than children with special health care needs (CSHCN) (odds ratio, 0.3) of meeting criteria for this primary outcome. Attainment rates for secondary outcomes (families feeling like partners in care; receives care within a medical home; received needed health care) were significantly lower among CMC than CSHCN. Family income was significantly associated with likelihood of meeting criteria for primary and secondary outcomes; however, the relationships between medical complexity status and our outcomes did not differ by income level. CONCLUSIONS: CMC are less likely than other CSHCN to report receiving care in well-functioning health care systems at all income levels. Further efforts are necessary to better adapt current health care systems to meet the unique needs of CMC.
Yu JA; McKernan G; Hagerman T; Schenker Y; Houtrow AJ
Hospital Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/hpeds.2020-0182" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2020-0182</a>
Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
communication; pediatric palliative care; bereavement; telehealth
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.
Weaver MS; Jurgens A; Neumann ML; Schalley SM; Kellas JK; Navaneethan H; Tullis J
Journal of Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2020.0617" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0617</a>
Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment
children chronic conditions medical complexity neurological disorders
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence and timing of onset for those conditions in children with NI. METHODS: This longitudinal analysis included 6229 children born in 2009 and continuously enrolled in Medicaid through 2015 with a diagnosis of NI by age 3 in the IBM Watson Medicaid MarketScan Database. NI was defined with an existing diagnostic code set encompassing neurologic, genetic, and metabolic conditions that result in substantial functional impairments requiring subspecialty medical care. The prevalence and timing of co-occurring chronic conditions was assessed with the Agency for Healthcare Research and Quality Chronic Condition Indicator system. Mean cumulative function was used to measure age trends in multimorbidity. RESULTS: The most common type of NI was static (56.3%), with cerebral palsy (10.0%) being the most common NI diagnosis. Respiratory (86.5%) and digestive (49.4%) organ systems were most frequently affected by co-occurring chronic conditions. By ages 2, 4, and 6 years, the mean (95% confidence interval [CI]) numbers of co-occurring chronic conditions were 3.7 (95% CI 3.7-3.8), 4.6 (95% CI 4.5-4.7), and 5.1 (95% CI 5.1-5.2). An increasing percentage of children had ≥9 co-occurring chronic conditions as they aged: 5.3% by 2 years, 10.0% by 4 years, and 12.8% by 6 years. CONCLUSIONS: Children with NI enrolled in Medicaid have substantial multimorbidity that develops early in life. Increased attention to the timing and types of multimorbidity in children with NI may help optimize their preventive care and case management health services.
Thomson J; Hall M; Nelson K; Flores JC; Garrity B; DeCourcey DD; Agrawal R; Goodman DM; Feinstein JA; Coller RJ; Cohen E; Kuo DZ; Antoon JW; Houtrow AJ; Bastianelli L; Berry JG
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2020-009217" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-009217</a>
I grieve because I loved her: Bereaved parents' perceptions of a mindfulness-based retreat
bereaved parent coping death of a child mindfulness-based invervention qualitative interviews
Mindfulness-based interventions have recently been applied to grief-related distress. However, little is known about how bereaved participants experience them. This study explored bereaved parents' experiences of a mindfulness-based grief retreat through semi-structured interviews with 19 participants. Interview transcripts were thematically analyzed to gain an understanding of how participants experienced the retreat and its perceived effect on their lives. Four themes representing the perceived benefits of the retreat emerged: psychoeducation, mindfulness, mutual support and understanding, and relationships. The mindfulness-based retreat was generally experienced as beneficial in coping with the death of a child.
Thieleman K; Cacciatore J
Death Studies
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2021.1876791" target="_blank" rel="noreferrer noopener">10.1080/07481187.2021.1876791</a>
Prediction of Acquired Morbidity Using Illness Severity Indices in Pediatric Intensive Care Patients
Infant; Adolescent; Child; Humans; Risk Factors; Child Preschool; Severity of Illness Index; Retrospective Studies; Infant Newborn; Hospital Mortality; Singapore/epidemiology; Intensive Care Units Pediatric; Morbidity; Critical Care
OBJECTIVES: To assess the ability of two illness severity scores, Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3, in predicting PICU-acquired morbidity. DESIGN: Retrospective chart review conducted from April 2015 to March 2016. SETTING: Single-center study in a multidisciplinary PICU in a tertiary pediatric hospital in Singapore. PATIENTS: The study included all index admissions of patients 0-18 years old to the PICU during the study period. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Three outcomes were assessed at hospital discharge: mortality, survival with new morbidity defined as an increase in the Functional Status Scale score of greater than or equal to 3 points from baseline, and survival without morbidity. Of 577 consecutive admissions, 95 were excluded: 82 readmissions, 10 patients greater than or equal to 18 years old, two patients with missing baseline data, and one transferred to another PICU. Of 482 patients, there were 37 hospital deaths (7.7%) and 39 (8.1%) with acquired new morbidity. Median admission Pediatric Logistic Organ Dysfunction Score 2 and Pediatric Index of Mortality 3 scores differed among the three outcome groups. In addition, differences were found in emergency admission and neurologic diagnosis rates, PICU mechanical ventilation usage rates, and PICU length of stay. The highest proportion of neurologic diagnoses was observed in the new morbidity group. The final model simultaneously predicted risks of mortality, survival with new morbidity and survival without morbidity using admission Pediatric Logistic Organ Dysfunction Score 2 score, admission type, neurologic diagnosis, and preexisting chronic disease. Pediatric Logistic Organ Dysfunction Score 2 was superior to Pediatric Index of Mortality 3 in predicting risks of mortality and new morbidity, as indicated by volume under surface values of 0.483 and 0.362, respectively. CONCLUSIONS: Risk of mortality, survival with new morbidity, and survival without morbidity can be predicted simultaneously using admission Pediatric Logistic Organ Dysfunction Score 2, admission type, admission diagnosis, and preexisting chronic disease. Future independent studies will be required to validate the proposed model before clinical implementation.
Senna S; Ong C; Wong JJ; Allen JC Jr; Sultana R; Lee JH
Pediatric Critical Care Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/pcc.0000000000002417" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002417</a>
Implementation of a Multi-Modal Palliative Care Curriculum for Pediatric Residents
palliative care; resident education; medical education; curriculum
OBJECTIVES: To evaluate the feasibility and efficacy of a new multi-modal pediatric palliative care curriculum. We sought to determine the effect on comfort in palliative care, knowledge, and change in behavior by utilizing these skills with patients, and determine which modalities were most effective for residents. STUDY DESIGN: 25 pediatric residents were exposed to the 4-part curriculum. The modalities utilized in this curriculum included didactics, role-play, videos, case-discussion, small group activities, simulation, poetry and reflection. RESULTS: The pediatric residents self-reported an increase in comfort and knowledge of the components of pediatric palliative care after this curriculum. In addition, 74% of residents were able to identify a patient experience in which a component of the palliative care curriculum was utilized directly in patient care. The effectiveness of techniques utilized in this multimodal curriculum varied; residents reported that the poetry and reflection components were less effective, as compared with the role-play, simulation and other active learning components. CONCLUSIONS: Implementation of a multi-modal palliative care curriculum was effective in increasing knowledge in palliative care, comfort in breaking bad news, and caring for patients with palliative care needs. This can be translated into a change in behavior to utilize these new skills in the care of various patients in pediatrics. Among the various techniques used to teach this curriculum, residents reported that the techniques that most incorporated active learning and were directly applicable to the professional role of the resident were rated most valuable. This curriculum was well received, feasible and effective for pediatric residents.
Romanos-Sirakis E; Demissie S; Fornari A
American Journal of Hospice & Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909121990826" target="_blank" rel="noreferrer noopener">10.1177/1049909121990826</a>
Caring for Critically Ill Children With Suspected or Proven Coronavirus Disease 2019 Infection: Recommendations by the Scientific Sections' Collaborative of the European Society of Pediatric and Neonatal Intensive Care
Child; Humans; Infant Newborn; Critical Care; Intensive Care Neonatal; Covid-19; SARS-CoV-2; Critical Illness/therapy; Systemic Inflammatory Response Syndrome
OBJECTIVES: In children, coronavirus disease 2019 is usually mild but can develop severe hypoxemic failure or a severe multisystem inflammatory syndrome, the latter considered to be a postinfectious syndrome, with cardiac involvement alone or together with a toxic shock like-presentation. Given the novelty of severe acute respiratory syndrome coronavirus 2, the causative agent of the recent coronavirus disease 2019 pandemic, little is known about the pathophysiology and phenotypic expressions of this new infectious disease nor the optimal treatment approach. STUDY SELECTION: From inception to July 10, 2020, repeated PubMed and open Web searches have been done by the scientific section collaborative group members of the European Society of Pediatric and Neonatal Intensive Care. DATA EXTRACTION: There is little in the way of clinical research in children affected by coronavirus disease 2019, apart from descriptive data and epidemiology. DATA SYNTHESIS: Even though basic treatment and organ support considerations seem not to differ much from other critical illness, such as pediatric septic shock and multiple organ failure, seen in PICUs, some specific issues must be considered when caring for children with severe coronavirus disease 2019 disease. CONCLUSIONS: In this clinical guidance article, we review the current clinical knowledge of coronavirus disease 2019 disease in critically ill children and discuss some specific treatment concepts based mainly on expert opinion based on limited experience and the lack of any completed controlled trials in children at this time.
Rimensberger PC; Kneyber MCJ; Deep A; Bansal M; Hoskote A; Javouhey E; Jourdain G; Latten L; MacLaren G; Morin L; Pons-Odena M; Ricci Z; Singh Y; Schlapbach LJ; Scholefield BR; Terheggen U; Tissières P; Tume LN; Verbruggen S; Brierley J
Pediatric Critical Care Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/pcc.0000000000002599" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002599</a>
Development of a managed clinical network for children's palliative care - a qualitative evaluation
Children’s palliative care; Managed clinical network
BACKGROUND: Consistent evidence suggests that children's palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children's palliative care MCN, with an aim to identify barriers and enablers of successful implementation. METHODS: Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children's palliative care (September 2019-March 2020). RESULTS: The study explored health professionals' perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN's development was impeded by cross-cutting barriers including limited funding for the MCN and children's palliative care more generally, no shared technology, lack of standards and evidence base for children's palliative care, and shortage of palliative care staff. These barriers impacted on the MCN's ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. CONCLUSIONS: Key features of children's palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network's success.
Papworth A; Fraser L; Taylor J
BMC Palliative Care
2021
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<a href="http://doi.org/10.1186/s12904-021-00712-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00712-7</a>
Healthcare utilization and costs of pediatric home mechanical ventilation in Canada
Adult; Child; Female; Humans; Male; Child Preschool; Middle Aged; Quality of Life; Longitudinal Studies; Canada; Prospective Studies; pediatrics; Health Care Costs; Health Expenditures; Patient Acceptance of Health Care; Tracheostomy; healthcare costs; healthcare utilization; home mechanical ventilation; long-term mechanical ventilation; ventilator assisted individual; Ambulatory Care/economics; Caregivers/economics; Home Care Services/economics; Respiration Artificial/economics
BACKGROUND: Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private expenditures, including family caregiver time. Our objective was to examine public and private healthcare utilization and costs for children using HMV, and variables associated with highest costs. METHODS: Longitudinal, prospective, observational cost analysis study (2012-2014) collecting data on public and private (out-of-pocket, third-party insurance, and caregiving) costs every 2 weeks for 6 months using the Ambulatory Home Care Record. Functional Independence Measure (FIM), WeeFIM, and Caregiving Impact Scale (CIS) were measured at baseline and study completion. Regression modeling examined a priori selected variables associated with monthly costs using Andersen and Newman's framework for healthcare utilization, relevant literature, and clinical expertise. Data are reported in 2015 Canadian dollars ($1CAD = $0.78USD). RESULTS: Forty two children and their caregivers were enrolled. Overall median (interquartile range) monthly healthcare cost was $12 131 ($8159-$15 958) comprising $9929 (89%) family caregiving hours, $996 (9%) publicly funded, and $252 (2%) out-of-pocket (<1% third-party insurance) costs. With higher FIM score (lower dependency), median costs were reduced by 4.5% (95% confidence interval: 8.3%-0.5%), adjusted for age, sex, tracheostomy, and daily ventilation duration. Note: since the three cost categories did not sum to the total statistically derived median cost, the percentage of each category used the sum of median public + caregiver lost time + private out-of-pocket + third-party insurance as the denominator. CONCLUSIONS: For HMV children, most healthcare costs were due to family caregiving costs. More dependent children incur highest costs. The financial burden to family caregivers is substantial and needs to considered in future policy decisions related to pediatric HMV.
Nonoyama ML; Katz SL; Amin R; McKim DA; Guerriere D; Coyte PC; Wasilewski M; Zagorski B; Rose L
Pediatric Pulmonology
2020
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<a href="http://doi.org/10.1002/ppul.24923" target="_blank" rel="noreferrer noopener">10.1002/ppul.24923</a>
Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study
paediatrics; paediatric palliative care; community child health; primary care
OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis was conducted on all interview data relating to experiences of primary care. SETTING: West Midlands, UK. PARTICIPANTS: A total of 31 participants (10 children with life-limiting and life-threatening conditions and 21 family members) from 14 families. STUDY DESIGN AND SETTING: Secondary thematic analysis of qualitative interview data from a study carried out in the West Midlands, UK. METHOD: 41 serial interviews with 31 participants from 14 families: 10 children aged 5-18 years with life-limiting and life-threatening conditions, and 21 of their family members. RESULTS: Three key themes emerged: (1) poor experiences of general practice cause children and families to feel isolated, (2) children and families value support from general practice, and (3) there are practical ways through which general practice has the potential to provide important aspects of care. Children and families reported benefits from fostering their relationship with their general practice in order to access important aspects of care, including the assessment and management of acute illness, chronic disease and medication reviews, and holistic support. CONCLUSION: Children with life-limiting and life-threatening conditions and their families value the involvement of general practice in the care, alongside their paediatric specialists. Ways of developing and providing such support as part of an integrated system of care need to be developed.
Mitchell S; Harding S; Samani M; Slowther AM; Coad J; Dale J
BMJ Open
2021
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<a href="http://doi.org/10.1136/bmjopen-2020-041476" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-041476</a>
A Randomized Comparative Trial to Evaluate a PICU Navigator-Based Parent Support Intervention
Child; Humans; Communication; Parents; Personal Satisfaction; Intensive Care Units Pediatric; Terminal Care
OBJECTIVES: Communication breakdowns in PICUs contribute to inadequate parent support and poor post-PICU parent outcomes. No interventions supporting communication have demonstrated improvements in parental satisfaction or psychologic morbidity. We compared parent-reported outcomes from parents receiving a navigator-based parent support intervention (PICU Supports) with those from parents receiving an informational brochure. DESIGN: Patient-level, randomized trial. SETTING: Two university-based, tertiary-care children's hospital PICUs. PARTICIPANTS: Parents of patients requiring more than 24 hours in the PICU. INTERVENTIONS: PICU Supports included adding a trained navigator to the patient's healthcare team. Trained navigators met with parents and team members to assess and address communication, decision-making, emotional, informational, and discharge or end-of-life care needs; offered weekly family meetings; and did a post-PICU discharge parent check-in. The comparator arm received an informational brochure providing information about PICU procedures, terms, and healthcare providers. MEASUREMENTS AND MAIN RESULTS: The primary outcome was percentage of "excellent" responses to the Pediatric Family Satisfaction in the ICU 24 decision-making domain obtained 3-5 weeks following PICU discharge. Secondary outcomes included parental psychologic and physical morbidity and perceptions of team communication. We enrolled 382 families: 190 received PICU Supports, and 192 received the brochure. Fifty-seven percent (216/382) completed the 3-5 weeks post-PICU discharge survey. The mean percentage of excellent responses to the Pediatric Family Satisfaction in the ICU 24 decision-making items was 60.4% for PICU Supports versus 56.1% for the brochure (estimate, 3.57; SE, 4.53; 95% CI, -5.77 to 12.90; p = 0.44). Differences in secondary outcomes were not statistically significant. Most parents (91.1%; 113/124) described PICU Supports as "extremely" or "somewhat" helpful. CONCLUSIONS: Parents who received PICU Supports rated the intervention positively. Differences in decision-making satisfaction scores between those receiving PICU Supports and a brochure were not statistically significant. Interventions like PICU Supports should be evaluated in larger studies employing enhanced recruitment and retention of subjects.
Michelson KN; Frader J; Charleston E; Rychlik K; Aniciete DY; Ciolino JD; Sorce LR; Clayman ML; Brown M; Fragen P; Malakooti M; Derrington S; White D
Pediatric Critical Care Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/pcc.0000000000002378" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002378</a>
Use of standardized body composition measurements and malnutrition screening tools to detect malnutrition risk and predict clinical outcomes in children with chronic conditions
Adolescent; Child; Female; Humans; Male; Risk Factors; Child Preschool; Anthropometry; Chronic Disease; screening; Child Development; pediatric patients; body composition; Body Composition; clinical outcomes; malnutrition; nutritional risk; Child Nutrition Disorders/diagnosis
BACKGROUND: Better tools are needed to diagnose and identify children at risk of clinical malnutrition. OBJECTIVES: We aimed to compare body composition (BC) and malnutrition screening tools (MSTs) for detecting malnutrition on admission; and examine their ability to predict adverse clinical outcomes [increased length of stay (LOS) and complications] in complex pediatric patients. METHODS: This was a prospective study in children 5-18 y old admitted to a tertiary pediatric hospital (n = 152). MSTs [Pediatric Yorkhill Malnutrition Score (PYMS), Screening Tool for the Assessment of Malnutrition in Pediatrics (STAMP), and Screening Tool for Risk of Impaired Nutritional Status and Growth (STRONGkids)] were completed on admission. Weight, height, and BC [fat mass (FM) and lean mass (LM) by DXA] were measured (n = 118). Anthropometry/BC and MSTs were compared with each other and with clinical outcomes. RESULTS: Subjects were significantly shorter with low LM compared to reference data. Depending on the diagnostic criteria used, 3%-17% were classified as malnourished. Agreement between BC/anthropometric parameters and MSTs was poor. STAMP and STRONGkids identified children with low weight, LM, and height. PYMS, and to a lesser degree STRONGkids, identified children with increased LOS, as did LM compared with weight or height. Patients with complications had lower mean ± SD LM SD scores (-1.38 ± 1.03 compared with -0.74 ± 1.40, P < 0.05). In multivariable models, PYMS high risk and low LM were independent predictors of increased LOS (OR: 3.76; 95% CI: 1.36, 10.35 and OR: 3.69; 95% CI: 1.24, 10.98, respectively). BMI did not predict increased LOS or complications. CONCLUSIONS: LM appears better than weight and height for predicting adverse clinical outcomes in this population. BMI was a poor diagnostic parameter. MSTs performed differently in associations to BC/anthropometry and clinical outcomes. PYMS and LM provided complementary information regarding LOS. Studies on specific patient populations may further clarify the use of these tools and measurements.
Lara-Pompa NE; Hill S; Williams J; Macdonald S; Fawbert K; Valente J; Kennedy K; Shaw V; Wells JC; Fewtrell M
American Journal of Clinical Nutrition
2020
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<a href="http://doi.org/10.1093/ajcn/nqaa142" target="_blank" rel="noreferrer noopener">10.1093/ajcn/nqaa142</a>
Validation of an Electronic Pediatric Index of Mortality 2 Score in a Mixed Quaternary PICU
Infant; Child; Humans; Severity of Illness Index; Retrospective Studies; Hospital Mortality; Cohort Studies; Intensive Care Units Pediatric; Electronics
OBJECTIVE: To assess the validity of an electronic version of the Pediatric Index of Mortality 2 score. DESIGN: Retrospective observational study. SETTING: Pediatric and cardiac ICUs at a quaternary medical center. PATIENTS: Patients more than 60 days old admitted to the PICU or cardiac ICU between January 1, 2010, and December 31, 2014. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: After adapting the Pediatric Index of Mortality 2 score into a version applicable to retrospective electronic health record data, it was validated in a mixed-ICU cohort. A manually ascertained Pediatric Index of Mortality 2 score was directly compared with the electronically derived electronic version of the Pediatric Index of Mortality 2 score in 100 randomly selected patients with good agreement between score components with nine out of 11 components having an intraclass correlation coefficient or Cohen κ greater than or equal to 0.6. In assessing the electronic version of the Pediatric Index of Mortality 2 score in the entire cohort of 12,582 patient encounters, it had good discrimination with area under the receiver operating curve of 0.89, appropriate calibration with no significant difference between observed and expected deaths, and excellent predictive ability with a Brier score of 0.0135. CONCLUSIONS: The Pediatric Index of Mortality 2 score can be adapted to utilize retrospective electronic health record data with acceptable discrimination, calibration and accuracy a large mixed-ICU cohort.
Joyce EL; Crana CM; Yabes J; Kellum JA
Pediatric Critical Care Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/pcc.0000000000002347" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002347</a>
Starting out in haziness': Parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition in Ireland
Diagnosis; Children; Parents; Experience; Life-limiting
PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. FINDINGS: 'Starting out in haziness' was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: 'Entering a whole new world', 'Acquiring a learner permit' and 'Navigating the unknown territory'. CONCLUSION: Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.
Hurley F; Kiernan G; Price J
Journal of Pediatric Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2020.12.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.12.015</a>
Cold bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study
grief; paediatric palliative care; bereavement; Cold bedrooms; cold cot; cooling blanket; cooling facilities
BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children's hospices have a tradition of using 'cooling facilities' (cold bedrooms, cooled blanket/mattress) to extend this period of time by slowing deterioration of the body. AIMS: To describe: (1) type and use of cooling facilities in UK children's hospices, policies and practices regarding their use, and any changes over time. (2) Director of care's views on the purpose of cooling facilities and the rationale for hospice-specific practices. METHODS: An explanatory mixed-methods design consisting two phases: a crosssectional survey of directors of care of UK children's hospices (n = 52) followed by semi-structured telephone interviews with a sub-sample of respondents. Survey data were analysed using descriptive statistics and interview data using directed content analysis. RESULTS: 41/52 hospices completed the survey and 13 directors of care were interviewed. All hospices had cooling facilities. Some offered use of portable cooling facilities at home, though take-up appears low. Hospices differed in approaches to managing care and duration of use. Views on whether parents should observe deterioration informed the latter. Directors of care believed they provide families with time to say 'goodbye' and process their loss. Challenges for staff were reported.
Hackett J; Beresford B
Palliative Medicine
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216320984335" target="_blank" rel="noreferrer noopener">10.1177/0269216320984335</a>
Goals of Care Discussions and Moral Distress among Neonatal Intensive Care Unit Staff
Communication; Moral Distress; Ethics; Neonatal; End of Life
CONTEXT: The relationship between quality of Goals of Care (GOC) conversations and moral distress among NICU providers is not known. OBJECTIVES: We sought: 1) to explore levels of moral distress in providers, 2) to evaluate how staff moral distress changes in relation to GOC discussions and 3) to identify elements of GOC discussions associated with change in moral distress. We hypothesized that staff moral distress would change after GOC discussions and that that change would vary with presence of key discussion elements. METHODS: Prospective cohort study in a level IV NICU in an urban teaching hospital. We administered validated instruments at baseline and following GOC discussions including the Moral Distress Thermometer (MDT) and Williams Instrument (a measure of end-of-life care) to physicians, nurses, and social workers. RESULTS: We collected data on 79 GOC conversations over a one-year period from 2018-2019. Most providers experienced an increase in moral distress following a GOC discussion. Providers experienced an average increase in moral distress, as measured by the MDT, of 0.84 (+/-3.15) (p=.002). Physicians experienced an average change in moral distress of 1.1 (+/-3.52) (p= 0.01) while nurses experienced an average change of .55 (+/-2.66) (p= 0.07). Several elements of discussions were associated with the degree of increase in moral distress after the conversation. CONCLUSION: Change in moral distress among providers may be a useful metric of quality of GOC discussions. There are identifiable elements of GOC conversations that are associated with high quality discussions. These elements warrant further study.
Guttmann K; Flibotte J; Seitz H; Huber M; DeMauro SB
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.124" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.124</a>
Educational Perspectives: Palliative Care Education in Neonatal-Perinatal Medicine Fellowship
Humans; Infant Newborn; Internship and Residency; Palliative Medicine/education; Neonatology/education; Palliative Care/methods/standards; Infant Newborn Diseases/therapy; Perinatology/education
The neonatal period from birth to less than or equal to 28 days is one of increased risk of death. Congenital anomalies and prematurity are 2 of the most common risk factors for death at this early age. Many of these neonates will die in an intensive care unit, some with full resuscitative efforts being undertaken despite the understanding that these actions are highly unlikely to yield an outcome different from death. Palliative care allows curative therapies to be provided alongside supportive techniques such as enhanced family communication, attention to spirituality and the psychosocial health of the family, management of symptoms other than those specific to the underlying disease process, and enhancing comfort. The American Academy of Pediatrics has set forth recommendations related to pediatric palliative care for the various pediatric subspecialties; however, much of the focus is on disease processes and curing or mitigating various illnesses. Given the high preponderance of death in the neonatal period, neonatal-perinatal medicine training programs should be tasked with generating formal palliative care training. Such training should be geared to providing better care for neonatal patients with a life-limiting or life-altering illness, and better equipping future neonatologists with the tools needed to provide truly comprehensive care for their sickest patients at risk for death and disability. This article serves to review the concept of palliative care in neonates, discuss the paucity of formal education in palliative care, explore the general trend in palliative care education, review various ways in which palliative care education can be formalized, and define metrics of a successful educational program.
Forman KR; Thompson-Branch A
Neoreviews
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/neo.21-2-e72" target="_blank" rel="noreferrer noopener">10.1542/neo.21-2-e72</a>
Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal
children; hospital; nursing; pediatric palliative care; hope; qualitative research; therapeutic letters
PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters. The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed. FINDINGS: Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner-strengthening, recognition of parental skills, and promotion of self-efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope. PRACTICE IMPLICATIONS: To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope-based intervention to provide an evidence base from which to enhance the well-being of parental caregivers of children who have CCCs.
Fonseca R; Carvalho M; Querido A; Figueiredo MH; Bally J; Charepe Z
Journal for Specialists in Pediatric Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jspn.12325" target="_blank" rel="noreferrer noopener">10.1111/jspn.12325</a>
Prioritization of Pediatric Palliative Care Field-Advancement Activities in the United States: Results of a National Survey
pediatric; palliative care; funding; curriculum; quality of health care; financing
BACKGROUND: The field of pediatric palliative care (PPC) continues to encounter challenges and opportunities to improving access to high-quality PPC services. In early 2019, a workshop identified eleven potential "next step" actions, and subsequently a national survey-based poll of members of the PPC community was conducted to prioritize these potential actions in terms of their "actionable importance." METHODS: Invitations to the survey were distributed in October 2019 to interdisciplinary PPC health care professionals via email to two major listservs, one hosted by the Section of Hospice and Palliative Medicine of the American Academy of Pediatrics, the other by the Center to Advance Palliative Care. Respondents rated the "actionable importance" of items relative to each other via a discrete choice experiment. Median importance scores are reported for each item. RESULTS: 177 individuals responded to the survey. The majority (62.2%) were physicians, with nurses (16.4%), advanced practice nurses (7.9%), and social workers (7.3%) being the other most common responders. The top 5 potential actions, in descending rank order, were: Determine what parents value regarding PPC (median score of 17.8, out of a total score of all items of 100); Define and disseminate core primary PPC curriculum (median, 15.3); Develop PPC national representation strategy and tactics (median, 12.3); Create PPC-specific program development toolkit (median, 10.9); and, Analyze payment and financing ratios (median, 9.6). CONCLUSIONS: Those seeking to advance the field of PPC should take into account the findings from this study, which suggest that certain actions are more likely to have a beneficial impact on moving the field forward.
Feudtner C; Faerber JA; Rosenberg AR; Kobler K; Baker JN; Bowman BA; Wolfe J; Friebert S
Journal of Pain and Symptom Management
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2021.01.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.007</a>
Parent-Reported Symptoms and Medications Used Among Children With Severe Neurological Impairment
Infant; Child; Comorbidity; Female; Male; Child Preschool; Adolescence; Data Analysis Software; Human; Confidence Intervals; Descriptive Statistics; Record Review; Health Resource Utilization; Cross Sectional Studies; Funding Source; Scales; Severity of Illness; Central Nervous System Agents -- Therapeutic Use; Nervous System Diseases -- Epidemiology -- In Adolescence; Nervous System Diseases -- Epidemiology -- In Infancy and Childhood; Nervous System Diseases -- Symptoms; Peripheral Nervous System Agents -- Therapeutic Use; Polypharmacy
Key Points: Question: In children with severe neurological impairment (SNI) who cannot self-report, can comprehensive parent-reported symptom assessments inform medication use? Findings: In this cross-sectional study of 100 children with SNI and polypharmacy, parents reported that children experienced multiple concurrent high-distress symptoms, notably irritability (65.0%), insomnia (55.0%), and pain (54.0%). Although higher symptom burdens were associated with increasing polypharmacy, opportunities existed to optimize pharmacotherapy; for example, among 54.0% of children with pain, only 61.0% were prescribed an analgesic. Meaning: Comprehensive parent-reported symptom data paired with medication data could help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms. This cross-sectional study examines whether higher global symptom scores are associated with use of more medications and assesses associations between specific symptoms and medications among children with severe neurological impairment. Importance: Children with severe neurological impairment (SNI) often take multiple medications to treat problematic symptoms. However, for children who cannot self-report symptoms, no system exists to assess multiple symptoms and their association with medication use. Objectives: To assess the prevalence of 28 distinct symptoms, test whether higher global symptom scores (GSS) were associated with use of more medications, and assess the associations between specific symptoms and medications. Design, Setting, and Participants: This cross-sectional study was conducted between April 1, 2019, and December 31, 2019, using structured parent-reported symptom data paired with clinical and pharmacy data, at a single-center, large, hospital-based special health care needs clinic. Participants included children aged 1 to 18 years with SNI and 5 or more prescribed medications. Data analysis was performed from April to June 2020. Exposure: During routine clinical visits, parent-reported symptoms were collected using the validated 28-symptom Memorial Symptom Assessment Scale (MSAS) and merged with clinical and pharmacy data. Main Outcomes and Measures: Symptom prevalence, counts, and GSS (scored 0-100, with 100 being the worst) were calculated, and the association of GSS with medications was examined. To evaluate associations between symptom-medication pairs, the proportion of patients with a symptom who used a medication class or specific medication was calculated. Results: Of 100 patients, 55.0% were boys, the median (interquartile range [IQR]) age was 9 (5-12) years, 62.0% had 3 or more complex chronic conditions, 76.0% took 10 or more medications, and none were able to complete the MSAS themselves. Parents reported a median (IQR) of 7 (4-10) concurrent active symptoms. The median (IQR) GSS was 12.1 (5.4-20.8) (range, 0.0-41.2) and the GSS was 9.8 points (95% CI, 5.5-14.1 points) higher for those with worse recent health than usual. Irritability (65.0%), insomnia (55.0%), and pain (54.0%) were the most prevalent symptoms. Each 10-point GSS increase was associated with 12% (95% CI, 4%-19%) higher medication counts, adjusted for age and complex chronic condition count. Among the 54.0% of children with reported pain, 61.0% were prescribed an analgesic. Conclusions and Relevance: These findings suggest that children with SNI reportedly experience substantial symptom burdens and that higher symptom scores are associated with increased medication use. Paired symptom-medication data may help clinicians identify targets for personalized symptom management, including underrecognized or undertreated symptoms.
Feinstein JA; Feudtner C; Blackmer AB; Valuck RJ; Fairclough DL; Holstein J; Gregoire LA; Samay S; Kempe A
JAMA Network Open
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2020.29082" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.29082</a>
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
Child; Humans; Surveys and Questionnaires; Infant Newborn; Canada; Cross-Sectional Studies; Morals; Intensive Care Units Neonatal; Stress Psychological/diagnosis/epidemiology
OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral Distress Scale-Revised and by self-rating. Depersonalization was assessed on the subscale of the Maslach Burnout Inventory. Respondents reported their attendance at each of six hospital supports that may serve to mitigate moral distress in frontline staff. Analyses compared outcomes across respondent characteristics and hierarchical linear regression evaluated individual, ICU, hospital, and regional effects. SETTING: Eligible ICUs were PICUs and level-3 neonatal ICUs in Canada. SUBJECTS: Eligible participants had worked in the participating ICU for more than 3 months. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We identified 54 eligible ICUs from 31 hospitals. Forty-nine Canadian neonatal ICUs and PICUs (91%) contributed 2,852 complete responses for a 45.2% response rate. Most respondents were nurses (64.9%) or from a neonatal ICU (66.5%). The median and interquartile range Moral Distress Scale-Revised were 79 (52-113); 997 respondents (34.2%) had Moral Distress Scale-Revised scores greater than or equal to 100, and 234 respondents (8.3%) strongly agreed that work caused them significant moral distress. Nurses had a median (interquartile range) Moral Distress Scale-Revised score of 85 (57-121), 19 points higher than physicians and 8 points higher than respiratory therapists (p < 0.0001). Moral Distress Scale-Revised scores increased from 53 (35-79) for those working in ICU less than 1 year to 83 (54-120) in those working in ICU more than 30 years (p < 0.0001); 22.5% reported high degrees of depersonalization, which was associated with moral distress (p < 0.0001). Variability in Moral Distress Scale-Revised scores was explained by individual-level (92%), hospital-level (5%), and ICU-level effects (1%). Frequency of participation in potentially mitigating hospital supports had small effects (< 10 points) on mean Moral Distress Scale-Revised scores. CONCLUSIONS: Moral distress is common in clinicians working in ICUs for children. Addressing moral distress will require interventions tailored to individuals in higher-risk groups.
Dryden-Palmer K; Moore G; McNeil C; Larson CP; Tomlinson G; Roumeliotis N; Janvier A; Parshuram CS
Pediatric Critical Care Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/pcc.0000000000002189" target="_blank" rel="noreferrer noopener">10.1097/pcc.0000000000002189</a>
Insights into the Frequency and Distinguishing Features of Sleep Disorders in Pediatric Palliative Care Incorporating a Systematic Sleep Protocol
pediatrics; palliative care; sleep; neurobehavioral manifestations
Currently, no concrete figures on sleep disorders and sleep characteristics in children and adolescents with life-limiting conditions (LLC) and severe neurological impairment (SNI) based on pediatric palliative care professionals' assessment and following an official classification system such as the International Classification of Sleep Disorders (ICSD-3) exist. The ICSD-3 sleep disorders of inpatient children and adolescents with LLC and SNI (N = 70) were assessed by professionals using a recording sheet (two-year recruitment period). A systematic sleep protocol was applied to identify patients' sleep characteristics. Of these patients, 45.6% had sleep disorders, with the majority of them experiencing two different ones. Overall, the most frequently identified disorders were Chronic Insomnia and Circadian Sleep-Wake Disorder. Patients experiencing Chronic Insomnia showed more sleep phases during the daytime and more waking phases at nighttime than those unaffected. Patients with and without a Circadian Sleep-Wake Disorder additionally differed in the length of sleep phases during the daytime. Rapid changes between wakefulness and sleep were specifically characteristic of Hypersomnia. The study provides important insights into the prevalence and characteristics of individual ICSD-3 sleep disorders in pediatric palliative care. The findings may contribute to a targeted and efficient diagnosis and therapy of distressing sleep problems in seriously ill patients.
Dreier LA; Zernikow B; Stening K; Wager J
Children (Basel)
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children8010054" target="_blank" rel="noreferrer noopener">10.3390/children8010054</a>
Development of a Stakeholder Driven Serious Illness Communication Program for Advance Care Planning in Children, Adolescents, and Young Adults with Serious Illness
conversations guides decision making intervention development life-limiting illness life-threatening illness parents pediatric palliative care qualitative research stakeholder engagement
Objectives: To develop a generalizable advance care planning (ACP) intervention for children, adolescents, and young adults with serious illness using a multistage, stakeholder-driven approach. Study design: We first convened an expert panel of multidisciplinary health care providers (HCPs), researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents, and seriously ill adolescents and young adults to contextualize perspectives on ACP communication and our Pediatric Serious Illness Communication Program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content, and barriers for Pedi-SICP implementation. Expert panelists then reviewed, amended and finalized intervention components. Result(s): Stakeholders (34 HCPs, 9 parents, and 7 seriously ill adolescents and young adults) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation, including the need for HCP training, competing demands, uncertainty regarding timing, and documentation of ACP discussions. Conclusion(s): The finalized PediSICP intervention includes a structured HCP and family ACP communication occasion supported by a 3-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine the feasibility of the PediSICP and whether it improves care alignment with patient and family goals. Copyright © 2020 Elsevier Inc.
DeCourcey DD; Partin L; Revette A; Bernacki R; Wolfe J
Journal of Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2020.09.030" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.09.030</a>
Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
Child; Female; Humans; Male; Reproducibility of Results; Child Preschool; Canada; Prospective Studies; Predictive Value of Tests; Genetic Testing/statistics & numerical data; Somatoform Disorders/diagnosis; Whole Genome Sequencing/statistics & numerical data
IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reproductive planning. Conventional genetic testing strategies for CMC are often costly, time consuming, and ultimately unsuccessful. OBJECTIVE: To evaluate the analytical and clinical validity of genome sequencing as a comprehensive diagnostic genetic test for CMC. DESIGN, SETTING, AND PARTICIPANTS: In this cohort study of the prospective use of genome sequencing and comparison with standard-of-care genetic testing, CMC were recruited from May 1, 2017, to November 30, 2018, from a structured complex care program based at a tertiary care pediatric hospital in Toronto, Canada. Recruited CMC had at least 1 chronic condition, technology dependence (child is dependent at least part of each day on mechanical ventilators, and/or child requires prolonged intravenous administration of nutritional substances or drugs, and/or child is expected to have prolonged dependence on other device-based support), multiple subspecialist involvement, and substantial health care use. Review of the care plans for 545 CMC identified 143 suspected of having an undiagnosed genetic condition. Fifty-four families met inclusion criteria and were interested in participating, and 49 completed the study. Probands, similarly affected siblings, and biological parents were eligible for genome sequencing. EXPOSURES: Genome sequencing was performed using blood-derived DNA from probands and family members using established methods and a bioinformatics pipeline for clinical genome annotation. MAIN OUTCOMES AND MEASURES: The primary study outcome was the diagnostic yield of genome sequencing (proportion of CMC for whom the test result yielded a new diagnosis). RESULTS: Genome sequencing was performed for 138 individuals from 49 families of CMC (29 male and 20 female probands; mean [SD] age, 7.0 [4.5] years). Genome sequencing detected all genomic variation previously identified by conventional genetic testing. A total of 15 probands (30.6%; 95% CI 19.5%-44.6%) received a new primary molecular genetic diagnosis after genome sequencing. Three individuals had novel diseases and an additional 9 had either ultrarare genetic conditions or rare genetic conditions with atypical features. At least 11 families received diagnostic information that had clinical management implications beyond genetic and reproductive counseling. CONCLUSIONS AND RELEVANCE: This study suggests that genome sequencing has high analytical and clinical validity and can result in new diagnoses in CMC even in the setting of extensive prior investigations. This clinical population may be enriched for ultrarare and novel genetic disorders. Genome sequencing is a potentially first-tier genetic test for CMC.
Costain G; Walker S; Marano M; Veenma D; Snell M; Curtis M; Luca S; Buera J; Arje D; Reuter MS; Thiruvahindrapuram B; Trost B; Sung WWL; Yuen RKC; Chitayat D; Mendoza-Londono R; Stavropoulos DJ; Scherer SW; Marshall CR; Cohn RD; Cohen E; Orkin J; Meyn MS; Hayeems RZ
JAMA Network Open
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2020.18109" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.18109</a>
Independent hospices for children and young people; Hospices North East
children collaborative hospices England hospice
In 2012 more than 2000 children and young people (CYP) aged 1–19 died in England and Wales. For CYP, cancer, nervous system, respiratory, cardiovascular and congenital conditions account for about 60% of deaths. The nine independent hospices across North East England have formed a collaborative (Hospices North East, HNE) working together to enable collective description of the type and volume of services provided, and the patients and their families served. We describe the services provided for CYP.
Brown A; Newton J; Nicholson C; Fearing A; Gordon S; Wood P; Egdell A; McKean MC; Ellam J
Archives of Disease in Childhood
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2019-317861" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2019-317861</a>
Characteristics and outcomes of coronavirus disease 2019 (COVID-19) in critically ill pediatric patients admitted to the intensive care unit: A multicenter retrospective cohort study
Children; Mortality; SARS-CoV-2; Intensive care
BACKGROUND: Characteristics of critical Severe Acute Respiratory Syndrome-related Coronavirus 2 (SARS-CoV-2) infection in children is not well understood. This study described the clinical characteristics of children admitted to intensive care units (ICU) and explored factors associated with the need for invasive ventilation or mortality. METHODS: A multicenter, retrospective, cohort study was conducted over eight medical centers, including all patients younger than 18 years of age and admitted to the ICU due to a direct consequence of coronavirus disease 2019 (COVID-19). Patients who were admitted to the ICU for any alternate reason and tested positive for SARS-CoV-2 by screening test, and patients who were admitted due to multi-inflammatory syndrome in children, were excluded. Demographic, laboratory, imaging, and clinical data were collected. Descriptive statistics were used to compare survivors and non-survivors. Fine and Gray's hazard model was used to estimate the association between clinical variables and ICU death. RESULTS: During the study period, 25 pediatric COVID-19 patients received care in the ICUs. The median age was 2.78 years (IQR 0.21-8.51), and 60% were male. Only three patients were reported to be previously healthy at admission. Nine (36%) patients required invasive mechanical ventilation, including two were on extracorporeal membrane oxygenation. Four (16%) patients died during ICU care. In univariate analysis, the presence of comorbidity (HR 0.0001; 95%CI 0.00001-0.00016), platelets count (HR 0.99; 95% CI 0.98-0.99), elevated procalcitonin (HR 1.05; 95%CI 1.016-1.09), and circulatory compromise (HR 16.34; 95%CI 1.99-134.35), all at the time of ICU admission, were associated with in-ICU mortality. CONCLUSION: Our findings suggest that children admitted to the ICU with SARS-CoV-2 infection, generally, have a favorable outcome. Low platelets count, elevated procalcitonin, presence of comorbidity, and shock at the time of ICU admission were associated with death. This study may shed more light on the disease dynamics of critical pediatric COVID-19.
Alfraij A; Bin Alamir AA; Al-Otaibi AM; Alsharrah D; Aldaithan A; Kamel AM; Almutairi M; Alshammari S; Almazyad M; Macarambon JM; Alghounaim M
Journal of Infection and Public Health
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jiph.2020.12.010" target="_blank" rel="noreferrer noopener">10.1016/j.jiph.2020.12.010</a>
Informing mothers of neonatal death and the need for family-centered bereavement care: A phenomenological qualitative study
grief; neonatal death; bereavement; burial; funeral rites
PURPOSE: To understand the lived experience of mothers surrounding the time of being informed of neonatal deaths in intensive care units. DESIGN: A phenomenological qualitative approach was employed. METHODS: Twelve mothers (age 24-41 years) were identified from the neonatal mortality records of two large neonatal intensive care units with high neonate turnover rates in Amman, Jordan. Data were collected using semistructured interviews with the participants. Interpretive phenomenology was used to generate themes regarding the essence of the mother's experience. RESULTS: Critical analyses of mothers' accounts revealed three major themes: (a) Minimize the hurt, which described how mothers intuited overprotection by their families while the news was conveyed indirectly to them; (b) The striking reality of death, which captured mothers' distressing experiences while realizing the loss of their neonates; and (c) Farwell my baby, which accentuated mothers' needs and experiences while neonates' bodies were honored and prepared for burial per the cultural norms in Jordan. PRACTICE IMPLICATIONS: Our findings highlighted the complex dynamics of familial interactions and cultural influences on mothers' bereavement experiences at the time of neonatal death. The grieving mothers expressed unfulfilled needs of receiving professional bereavement support at the time of neonatal death. Strategies are needed to optimize the supportive role of specialized nurses in providing family-centered bereavement care to mothers and their families who experience neonatal death.
Abdel Razeq NM; Al-Gamal E
Journal for Specialists in Pediatric Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jspn.12328" target="_blank" rel="noreferrer noopener">10.1111/jspn.12328</a>
The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Emotions; Psychology; Communication; Bereavement; Survivors; Conflict (Psychology); Human; Coping; Parenting; Grief; Social Work; Parents -- Psychosocial Factors; Systematic Review; Parental Role; Family Role; Science
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial role. An integrative review of literature of 20 studies across psychology, nursing, communications, social work, and family sciences was undertaken to determine the current state of science regarding bereaved parenting. Results revealed three influential contexts: the general context of parental grief and bereavement, described as traumatic and life-changing experiences; the personal context of the resulting parental changes and coping strategies; and the relational context of the subsequent parenting of surviving children, an experience characterized by periodic conflict between personal and children's needs, emotional fluctuations, challenges with levels of protectiveness and control, and a heightened sense of responsibility within the parental role. Discussion of results and implications for research are presented.
Haylett WJ; Scott Tilley D
Omega: Journal of Death & Dying
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">10.1177/0030222818819350</a>