The Design of a Data Management System for a Multicenter Palliative Care Cohort Study.

CONTEXT: Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. OBJECTIVE: To describe the design and lessons learned regarding the data management system for the Pediatric Palliative Care Research Network's Shared Data and Research (SHARE) project, a multicenter prospective cohort study of children receiving pediatric palliative care (PPC) and their parents, and to describe important attributes of this system, with specific considerations for the design of future studies. METHODS: The SHARE study consists of 643 PPC patients and up to two of their parents who enrolled from April 2017 to December 2020 at seven children's hospitals across the United States. Data regarding demographics, patient symptoms, goals of care, and other characteristics were collected directly from parents or patients at 6 timepoints over a 24-month follow-up period and stored electronically in a centralized location. Using medical record numbers, primary collected data was linked to administrative hospitalization data containing diagnostic and procedure codes and other data elements. Important attributes of the data infrastructure include linkage of primary and administrative data; centralized availability of multilingual questionnaires; electronic data collection and storage system; time-stamping of instrument completion; and a separate but connected study administrative database used to track enrollment. CONCLUSIONS: Investigators planning future multicenter prospective cohort studies can consider attributes of the data infrastructure we describe when designing their data management system.

An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact.

CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. METHODS: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. RESULTS: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. CONCLUSION: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.

The Association of Perceived Social Support with Anxiety over Time in Parents of Children with Serious Illnesses.

Background: Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses. Objective: To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time. Design: Prospective cohort study. Setting/Subjects: Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia. Measurements: Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months. Results: The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling. Conclusions: Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.

Psychological Well-Being and Family Environment of Siblings of Children with Life Threatening Illness.

BACKGROUND: The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings. OBJECTIVE: We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings. METHODS: We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment. RESULTS: Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p < 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p < 0.05). DISCUSSION: Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported.

Problems and hopes perceived by mothers, fathers and physicians of children receiving palliative care.

BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'. METHOD: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. RESULTS: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). CONCLUSION: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children.

Parental explicit heuristics in decision-making for children with life-threatening illnesses.

OBJECTIVE: To identify and illustrate common explicit heuristics (decision-making aids or shortcuts expressed verbally as terse rules of thumb, aphorisms, maxims, or mantras and intended to convey a compelling truth or guiding principle) used by parents of children with life-threatening illnesses when confronting and making medical decisions. METHODS: Prospective cross-sectional observational study of 69 parents of 46 children who participated in the Decision-making in Pediatric Palliative Care Study between 2006 and 2008 at the Children's Hospital of Philadelphia. Parents were guided individually through a semistructured in-depth interview about their experiences and thoughts regarding making medical decisions on behalf of their ill children, and the transcribed interviews were qualitatively analyzed. RESULTS: All parents in our study employed explicit heuristics in interviews about decision-making for their children, with the number of identified explicit heuristics used by an individual parent ranging from tens to hundreds. The heuristics served 5 general functions: (1) to depict or facilitate understanding of a complex situation; (2) to clarify, organize, and focus pertinent information and values; (3) to serve as a decision-making compass; (4) to communicate with others about a complex topic; and (5) to justify a choice. CONCLUSIONS: Explicit heuristics played an important role in decision-making and communication about decision-making in our population of parents. Recognizing explicit heuristics in parent interactions and understanding their content and functions can aid clinicians in their efforts to partner with parents in the decision-making process.

Putting on a happy face: emotional expression in parents of children with serious illness.

CONTEXT: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions. OBJECTIVES: To explore emotion using the Linguistic Inquiry and Word Count (LIWC) and a self-report questionnaire to better understand the relationship between these two measures of emotion in a pediatric care context. METHODS: Sixty-nine parents of 47 children who were participants in the Decision Making in Pediatric Palliative Care Study at The Children's Hospital of Philadelphia took part in this study. Parents completed the Positive and Negative Affect Schedule (PANAS) and a semistructured interview about their children and experience with medical decision making. The transcribed interviews were analyzed with the LIWC program, which yields scores for positive and negative emotional expression. The association between LIWC and PANAS scores was evaluated using multivariate linear regression to adjust for potential confounders. RESULTS: Parents who used more positive words when speaking about the illnesses of their children and the experience of medical decision making were more likely to report lower levels of positive affect on the PANAS: increase in the standard deviation of positive emotional expression was associated with an unadjusted 7.4% decrease in the self-reported positive affect (P = 0.015) and an adjusted 7.0% decrease in the self-reported positive affect (P = 0.057) after modeling for potential confounders. Increase in the standard deviation of negative emotional expression was associated with an adjusted 9.4% increase in the self-reported negative affect (P = 0.036). CONCLUSION: The inverse relationship between parents' positive emotional expression and their self-reported positive affect should remind both researchers and clinicians to be cognizant of the possibilities for emotional miscues, and consequent miscommunication, in the pediatric care setting.

Parental decision-making preferences in the pediatric intensive care unit.

OBJECTIVE: To assess parental decision-making preferences in the high-stress environment of the pediatric intensive care unit and test whether preferences vary with demographics, complex chronic conditions, prior admissions to the pediatric intensive care unit, and parental positive and negative emotional affect. DESIGN: Institutional Review Board-approved prospective cohort study conducted between December 2009 and April 2010. SETTING: Pediatric intensive care unit at The Children's Hospital of Philadelphia. PARTICIPANTS: Eighty-seven English-speaking parents of 75 children either <18 yrs of age or cognitively incapable of making their own decisions and who were hospitalized in the pediatric intensive care unit for >72 hrs. INTERVENTIONS: Parents were interviewed in person and completed standardized instruments that assessed decision-making preferences and parental affect. MEASUREMENTS AND MAIN RESULTS: The majority of parents in the analytic sample preferred shared decision making with their doctors (40.0%) or making the final decision/mostly making the final decision on their own (41.0%). None of the child and parent characteristics in the analytic sample were found to be significantly associated with the top decision-making preference. Using shared decision making as a reference category, we determined whether positive or negative affect scores were associated with preferring other decision-making options. We found that parents with higher positive affect were less likely to prefer self/mostly self (autonomous decision making). Increased positive affect was also associated with a reduced likelihood of preferring doctor/mostly doctor (delegating the decision), but not to a significant degree. CONCLUSIONS: Most parents in the pediatric intensive care unit prefer their role in decision making to be shared with their doctor or to have significant autonomy in the final decision. A sizeable minority, however, prefer decision-making delegation. Parental emotional affect has an association with decision-making preference.

Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study.

OBJECTIVE: To test the hypothesis that hopeful patterns of thoughts and emotions of parents of pediatric patients receiving palliative care consultative services are related to subsequent decisions, specifically regarding limit of intervention (LOI) orders. DESIGN: Prospective cohort study. SETTING: Children's hospital and surrounding region. PARTICIPANTS: Thirty-three pediatric patients receiving palliative care consultative services who did not have LOI orders at time of cohort entry and their 43 parental adults. MAIN EXPOSURES: Parental levels at time of cohort entry of hopeful patterns of thinking and emotions, in conjunction with perceptions about patients' health trajectories. MAIN OUTCOME MEASURE: Enactment of an LOI order after entry into the cohort. RESULTS: During the 6 months of observation, 14 patients (42.4%) had an LOI order enacted. In adjusted analyses, higher levels of parental hopeful patterns of thinking were significantly associated with increased odds of enactment of an LOI order (adjusted odds ratio [AOR], 2.73; 95% confidence interval [CI], 1.04-7.22). Increased odds of LOI enactment were associated to nonsignificant degrees with lower levels of parental positive affect (AOR, 0.44; 95% CI, 0.17-1.12), higher levels of parental negative affect (AOR, 2.02; 95% CI, 0.98-4.16), and parental perceptions of worsening health over time (AOR, 1.72; 95% CI, 0.73-4.07). CONCLUSION: For pediatric patients receiving palliative care consultative services, higher levels of parents' hopeful patterns of thinking are associated with subsequent enactment of LOI orders, suggesting that emotional and cognitive processes have a combined effect on medical decision making.