Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant.

OBJECTIVES: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2). METHODS: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge. A repeated measures design was used to assess change on a validated parenting stress inventory over the two timepoints (T1 and T2). Fifty-two parents (61 infants) participated at T1 and 44 (85%) at T2. RESULTS: On discharge (T1) stress was moderately high 3 months post discharge (T2) overall and domain-specific stress scores improved, except stress related to parent role functioning and participation in their child's medical care. Independent predictors of improvement in overall parenting stress scores (T2-T1) were being a younger parent and having experienced prior pregnancy-related loss. CONCLUSIONS FOR PRACTICE: The time of discharge from hospital to home is often stressful for parents of medically fragile infants. Improvements were found during the first 3 months at home, but improvement was minimal for stress related to role function and providing medical care. Past experience with pregnancy-related loss and being younger were associated with improvement in stress across theoretical domains. Screening for stress should be included as part of routine pre- and post-neonatal intensive care unit discharge psychosocial assessments of parents caring for infants with serious illness to ensure their unique support needs continue to be met over time.

What is already known about the topic? Stress in parents of sick infants is well-documented in the post-birth hospitalization period. Early management of parent stress after a child is born with a life-limiting/life-threatening condition is critical in promoting healthy infant attachment and development.What this study adds? Parents of medically fragile infants experience notable stress during the initial months at home. Pre-hospital discharge attention to medical and psychosocial characteristics of infants and parents may help health care teams anticipate post-discharge parenting challenges and facilitate personalized home support strategies aimed at minimizing parent stress and poor parent­child outcomes.

The Pediatric Palliative Care Quality Network: Palliative Care Consultation and Patient Outcomes.

BACKGROUND AND OBJECTIVES: Quality benchmarking in pediatric palliative care (PPC) helps identify gaps in care and guides quality improvement. Our study objective was to characterize inpatient PPC referral processes, interdisciplinary PPC delivery, and patient outcomes from a multisite PPC data repository. METHODS: Cross-sectional, administrative data analysis of 1587 PPC inpatient encounters at 5 US hospitals enrolled in the Pediatric Palliative Care Quality Network (2016-2022). PPC clinicians submitted data to a national repository for key quality indicators. Program and referral characteristics, care processes, and outcomes were examined descriptively. Time to referral, time on PPC service, and total hospital length of stay were compared by discharge disposition (alive or dead). RESULTS: Programs were in service for 13 (range 6-17) years on average. Most encounters involved children >1 year old (77%). Common diagnoses were solid tumor cancer (29%) and congenital or chromosomal conditions (14%). Care was often provided by ≤2 PPC team members (53%) until discharge (median = 7d, interquartile range 2-23). There were often multiple reasons for PPC referral, including psychosocial support (78%), goals of care discussions/advance care planning (42%), management of non-pain symptoms (34%), and pain (21%). Moderate-severe symptoms improved by second assessment for pain (71%), dyspnea (51%), fatigue (46%), and feeding issues (39%). CONCLUSIONS: Referrals to PPC were made early during hospitalization for psychosocial and physical symptom management. Moderate-severe symptom distress scores at initial assessment often improved. Findings highlight the need to ensure interdisciplinary PPC team staffing to meet the complex care needs of seriously ill children.

Education in Palliative and End-of-Life Care-Pediatrics: Curriculum Use and Dissemination.

CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: From 2011 to 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: About 172 of 786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across six continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.

A descriptive analysis of pediatric post-tonsillectomy pain and recovery outcomes over a 10-day recovery period from 2 randomized, controlled trials.

Pediatric tonsillectomy involves an often painful and lengthy recovery period, yet the extended recovery process is largely unknown. This article describes postoperative recovery outcomes for 121 children aged 4 to 15 (mean 6.6 years, SD = 2.3) years enrolled in 1 of 2 clinical trials of analgesia safety and efficacy after tonsillectomy. Postoperative analgesia included scheduled opioid analgesic plus acetaminophen/ibuprofen medication use (first 5 days) and "as-needed" use (last 5 days). Clinical recovery as measured daily by the Parents' Postoperative Pain Measure (PPPM; an observational/behavioral pain measure), children's self-reported pain scores, side-effect assessments, need for unanticipated medical care, and satisfaction with recovery over 10 days was assessed. Higher Parents' Postoperative Pain Measure scores were correlated with poorer sleep, receipt of breakthrough analgesics, distressing side effects, higher self-reported pain scores, and need for unanticipated medical care. Higher self-reported pain scores were associated with more distressing adverse events, including nausea, vomiting, insomnia, lower parent satisfaction, and unplanned medical visits and hospitalizations. Pain and symptoms improved over time, although 24% of the children were still experiencing clinically significant pain on day 10. Scheduled, multimodal analgesia and discharge education that sets realistic expectations is important. This study adds to the emerging body of literature that some children experience significant postoperative pain for an extended period after tonsillectomy.

Recent advances in pain treatment for children with serious illness.

Pain is a common distressing symptom in children receiving pediatric palliative care. Both in children with cancer, but especially in children with progressive neurodegenerative and chromosomal conditions with CNS impairment pain is common, and often under-recognized and undertreated. Multimodal analgesia for children with serious illness acts synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality. Successful pain treatment and prevention usually include integrative 'nonpharmacological' therapies, rehabilitation, psychology and spirituality in addition to pharmacology and regional anesthesia. This review article will address these effective components of multimodal pediatric analgesia and present starting doses of basic analgesia, opioids and adjuvants analgesia in infants, children and adolescents with serious illness.

Pain Experience in a US Children's Hospital: A Point Prevalence Survey Undertaken After the Implementation of a System-Wide Protocol to Eliminate or Decrease Pain Caused by Needles.

OBJECTIVES: Pain in hospitalized children remains under-assessed and undertreated. With this study, we aim to describe results from a repeat single-day, hospital-wide survey of children's pain and its treatment after the initiation of a hospital-wide quality improvement initiative used to reduce or eliminate pain caused by needle procedures. METHODS: All patients and parents listed on the inpatient morning census, in emergency department and outpatient surgery registration lists, were invited to participate in a brief single-day point prevalence survey of their experience with pain and its management in the hospital setting. Results were compared with a survey conducted 2 years earlier, before implementation of a system-wide Children's Comfort Promise needle pain treatment and prevention protocol. RESULTS: A total of 194 children and their parents participated in the current survey. A higher percentage of children reported having no pain compared with the previous survey (33% vs 24%; P = .07; not significant) and fewer experienced severe pain (score ≥7 out of 10). Fewer children identified pain caused by needles as the cause of the worst pain (21% vs 30%), although it remained the highest reported cause of the most painful experience overall. The number of pain management strategies administered and offered to children with needle pain (distraction, positioning, numbing cream, and sucrose and/or breastfeeding for infants) increased. CONCLUSIONS: The implementation of a mandatory Comfort Promise protocol used to minimize or prevent pain caused by elective needle procedures was associated with a significant reduction in overall pain prevalence and improved use of evidence-based practices for needle pain management.

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study.

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.

Tramadol versus codeine/acetaminophen after pediatric tonsillectomy: A prospective, double-blinded, randomized controlled trial.

OBJECTIVE: Tonsillectomy is one of the most common pediatric surgical procedures performed in the United States. The postoperative period can be particularly painful, and there is currently no consensus on an optimal analgesic regimen. The objective of this study was to evaluate efficacy and safety of the single drug tramadol versus codeine/acetaminophen post-tonsillectomy. DESIGN: Prospective, double-blinded, randomized controlled trial. SETTING: Large, Midwestern US pediatric hospital. PATIENTS: Eighty-four children aged 4-15 years who underwent a tonsillectomy (with or without adenoidectomy) procedure were randomized and 74 were included in the analysis. INTERVENTIONS: Group 1 received liquid codeine/acetaminophen for 10 days post-tonsillectomy (5 days scheduled, followed by 5 days as-needed). Group 2 received liquid tramadol for 10 days post-tonsillectomy (5 days scheduled, followed by 5 days as-needed). MAIN OUTCOME MEASURES: Efficacy and side effects were evaluated using a 10-day take-home diary that was completed by parents. RESULTS: Children in both study arms reported adequate post-tonsillectomy pain management without significant differences between groups in pain scores. Oversedation was significantly higher on the day of surgery in the codeine/acetaminophen group, and itching was experienced by significantly more children in the tramadol group during the postoperative period. CONCLUSIONS: As part of multimodal analgesia, scheduled plus as-needed tramadol may be considered for children in the postoperative setting due to its analgesic properties, low potential for side effects, and good safety profile.

Variations in evidence-based clinical practices in nine United States Veterans Administration opioid agonist therapy clinics.

BACKGROUND: Opioid agonist therapy (OAT) for opioid dependence has a strong evidence base, but clinical practice often does not conform to evidence-based practices. The goal of the OpiATE Initiative is to improve patient outcomes by implementing four evidence-based practices in United States Veterans Administration OAT clinics: (1) long-term maintenance orientation, (2) adequate dosing, (3) adequate counseling, and (4) use of contingency management. METHODS: The OpiATE monitoring system (OMS) was developed to help clinics assess concordance with evidence-based practices. For each patient, counselors record current agonist dose, recent counseling frequency, length of treatment, and urine toxicology results. For patients with sub-standard agonist doses, an algorithm was used to determine if the current dose was clinically appropriate. Maintenance orientation was assessed using the abstinence orientation scale. RESULTS: Concordance with counseling recommendations was uniformly high, concordance with maintenance orientation and dosing recommendations varied widely across clinics, and concordance with contingency management principles was low. Abstinence orientation scores were negatively correlated with dose and patient retention. Dose was negatively correlated with percent of urine screens positive for non-medical opioids and other illicit substances. CONCLUSIONS: The OMS was well accepted by clinic staff. Wide variability in clinical practices and outcomes across clinics supports the importance of individualizing quality improvement strategies to address specific performance gaps.