To determine if hospitalizations for specific infectious exposures are associated with hospital admissions for Henoch-Schönlein purpura (HSP).
We conducted a retrospective cohort study using ...administrative data of children admitted to 40 children's hospitals between January 1, 2002, and December 31, 2008. We examined the association of standardized rates of group A ß-hemolytic Streptococcus (GABS), Staphylococcus aureus, parainfluenza, influenza, adenovirus, and respiratory syncytial virus (RSV)-associated hospital admissions with standardized rates of HSP hospital admissions on a month by month basis using autoregressive moving average process models to account for temporal autocorrelation and clustering by hospital.
Among the 3,132 admissions for HSP observed over the 7-year study period, hospital admissions were most frequent September through April, but with substantial variability between hospitals for each month. Accounting for these month by month differences within each hospital, the rate of HSP admissions in a given month increased significantly as the standardized rates of GABS (p = 0.01), S. aureus (p < 0.01), and parainfluenza (p = 0.03) admissions increased.
Our results demonstrate a local month by month temporal association between hospitalization for GABS, S. aureus, and parainfluenza and hospitalization for HSP. Future investigations will be required to determine causality.
Abstract Context Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. Objectives In a mixed-method prospective ...cohort of parental dyads of children with serious illness, to describe the major problems and hopes perceived for their child, examine the degree of concordance between parents, and assess whether prevalence and concordance change over time. Methods Eighty-four parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately. Results The most common major problem and hope domains at baseline were physical body, quality of life, future health and well-being, and medical care. Parental dyads demonstrated a moderately high percentage of concordance (69%) regarding reported problem domains and a slightly lower percentage of concordance on hopes (61%), with higher concordance for more common domains. Domain prevalence and concordance changed considerably at 24 months. Parents of children who later died showed markedly different patterns of domain prevalence and more extreme patterns of concordance. Conclusion Parents of children with serious illness may have different perspectives regarding major problems and hopes, and these perspectives change over time. Parents of sicker children are more likely to be in either complete agreement or disagreement regarding the problems and hopes they identify.
Objective To assess sources of support and guidance on which parents rely when making difficult decisions in the pediatric intensive care unit and to evaluate associations of sources of support and ...guidance to anxiety, depression, and positive and negative affect. Study design This was a prospective cohort study of 86 English-speaking parents of 75 children in the pediatric intensive care unit at The Children's Hospital of Philadelphia who were hospitalized greater than 72 hours. Parents completed standardized instruments and a novel sources of support and guidance assessment. Results Most parents chose physicians, nurses, friends, and extended family as their main sources of support and guidance when making a difficult decision. Descriptive analysis revealed a broad distribution for the sources of support and guidance items related to spirituality. Parents tended to fall into 1 of 2 groups when we used latent class analysis: the more-spiritual group (n = 47; 55%) highly ranked “what my child wants” ( P = .023), spouses ( P = .002), support groups ( P = .003), church community ( P < .001), spiritual leader ( P < .001), higher power ( P < .001), and prayer ( P < .001) compared with the less-spiritual group (n = 39; 45%). The more-spiritual parents had greater positive affect scores ( P = .005). Less-spiritual parents had greater depression scores ( P = .043). Conclusions Parents rely most on physicians, nurses, and friends and extended family when making difficult decisions for their critically ill child. Respondents tended to fall into 1 of 2 groups where the more-spiritual respondents were associated with greater positive affect and may be more resistant to depression.
Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose ...of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.
Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.
Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.
Objective To conduct a national survey of pediatricians' access to and experience with clinical ethics consultation. Study design We surveyed a randomly selected sample of 3687 physician members of ...the American Academy of Pediatrics. We asked about their experiences with ethics consultation, the helpfulness of and barriers to consultation, and ethics education. Using a discrete choice experiment with maximum difference scaling, we evaluated which traits of ethics consultants were most valuable. Results Of the total sample of 3687 physicians, 659 (18%) responded to the survey. One-third of the respondents had no experience with clinical ethics consultation, and 16% reported no access to consultation. General pediatricians were less likely to have access. The vast majority (90%) who had experience with consultation had found it helpful. Those with fewer years in practice were more likely to have training in ethics. The most frequently reported issues leading to consultation concerned end-of-life care and conflicts with patients/families or among the team. Intensive care unit physicians were more likely to have requested consultation. Mediation skills and ethics knowledge were the most highly valued consultant characteristics, and representing the official position of the hospital was the least-valued characteristic. Conclusion There is variability in pediatricians' access to ethics consultation. Most respondents reported that consultation had been helpful in the past. Determining ethically appropriate end-of-life care and mediation of disagreements are common reasons that pediatricians request consultation.
Care for U.S. children living with serious illness and their families at home is a complex and patchwork system. Improving home-based care for children and families requires a comprehensive, ...multilevel approach that accounts for and examines relationships across home environments, communities, and social contexts in which children and families live and receive care. We propose a multilevel conceptual framework, guided by Bronfenbrenner’s ecological model, that conceptualizes the complex system of home-based care into five levels. Levels 1 and 2 contain patient and family characteristics. Level 3 contains factors that influence family health, well-being, and experience with care in the home. Level 4 includes the community, including community groups, schools, and providers. Level 5 includes the broader regional system of care that impacts the care of children and families across communities. Finally, care coordination and care disparities transcend levels, impacting care at each level. A multilevel ecological framework of home-based care for children with serious illness and families can be used in future multilevel research to describe and test hypotheses about aspects of this system of care, as well as to inform interventions across levels to improve patient and family outcomes.
A Hand to Hold Feudtner, Chris
JAMA : the journal of the American Medical Association,
07/2016, Letnik:
316, Številka:
2
Journal Article
Recenzirano
Feudtner remembers the day his 85-year-old father died of metastatic renal cell cancer. The intervals between the breaths of his father became irregular. He settled his attention fully on his father, ...holding his hand, breathing in any trace of fear or anxiety or loneliness that might be within him, breathing out all the love and calmness he could summon. His dad was now not breathing more than he was breathing, the pauses had grown so long. He was surprised how quickly his father was succumbing, but then thought of how weak he had become. After a minute, he stood up and kissed his father. He let go of his hand, with the endless reluctance of a last good-bye, and turned to the door.
Abstract Context Pediatric palliative care randomized controlled trials (PPC-RCTs) are uncommon. Objectives To evaluate the feasibility of conducting a PPC-RCT in pediatric cancer patients. Methods ...This was a cohort study embedded in the Pediatric Quality of Life and Evaluation of Symptoms Technology Study (NCT01838564). This multicenter PPC-RCT evaluated an electronic patient-reported outcomes system. Children aged two years and older, with advanced cancer, and potentially eligible for the study were included. Outcomes included: pre-inclusion attrition (patients not approached, refusals); post-inclusion attrition (drop-out, elimination, death, and intermittent attrition (IA; missing surveys) over nine months of follow-up); child/teenager self-report rates; and, reasons to enroll/participate. Results Over five years, of the 339 identified patients, 231 were eligible (in 22, we could not verify eligibility); 84 eligible patients were not approached and 43 declined participation. Patients not approached were more likely to die or have brain tumors. We enrolled 104 patients. Average enrollment rate was one patient per site per month; shortening follow-up from nine to three months (with optional re-enrollment) increased recruitment by 20%. A total of 87 patients completed the study (24 died) and 17 dropped out. Median IA was 41% in the first 20 weeks of follow-up and more than 60% in the eight weeks preceding death. Child/teenager self-report was 94%. Helping others, low burden procedures, incentives, and staff attitude were frequent reasons to enroll/participate. Conclusion A PPC-RCT in children with advanced cancer was feasible, post-inclusion retention adequate; many families participated for altruistic reasons. Strategies that may further PPC-RCT feasibility include: increasing target population through large multicenter studies, approaching sicker patients, preventing exclusion of certain patient groups, and improving data collection at end of life.
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