Kenneth Pituch

Pediatric sleep questionnaire (PSQ): validity and reliability of scales for sleep-disordered breathing, snoring, sleepiness, and behavioral problems

Objective: To develop and validate questionnaire scales that can be used in research to investigate the presence of childhood SRBDs and prominent symptom complexes, including snoring, daytime sleepiness, and related behavioral disturbances.Background: Obstructive sleep-related breathing disorders (SRBDs) are common but usually undiagnosed among children. Methods to help identify SRBDs without the expense of polysomnography could greatly facilitate clinical and epidemiological research.Methods: Subjects were children aged 2-18 years who had polysomnographically-confirmed SRBDs (n=54) or appointments at either of two general pediatrics clinics (n=108). Parents completed a Pediatric Sleep Questionnaire which contained items under consideration for inclusion in desired scales.Results: Item reduction, based on data from a randomly selected 50% of the subjects (group A), produced a 22-item SRBD score that was strongly associated with diagnosis of an SRBD (P<0.0001) in a logistic regression model that accounted for age and gender. Diagnosis was also strongly associated with subscores for snoring (four items, P<0.0001), sleepiness (four items, P=0.0003), and behavior (six items, P<0.0001) among group A subjects. The scales performed similarly well among group B subjects, and among subjects of different ages and gender. In group A and B subjects, respectively, a selected criterion SRBD score produced a sensitivity of 0.85 and 0.81; a specificity of 0.87 and 0.87; and a correct classification for 86 and 85% of subjects. The scales showed good internal consistency and, in a separate sample (n=21), good test-retest stability.Conclusions: These scales for childhood SRBDs, snoring, sleepiness, and behavior are valid and reliable instruments that can be used to identify SRBDs or associated symptom-constructs in clinical research when polysomnography is not feasible.

Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*.

Objective: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. Design: Cross-sectional multicenter survey study of bereaved parents. Setting: Two tertiary care pediatric hospitals. Subjects: Parents of children younger than 21 years with primary cardiac diagnoses who died in the hospital 9 months to 4 years before the survey date. Parents were excluded if they were non-English speakers or had previously denied permission to contact. Intervention: The Survey for Caring for Children with Advanced Heart Disease was developed, piloted, and then sent to parents of all children who died at two sites. Measurements and Main Results: Fifty bereaved parents responded (39% response rate) a mean of 2.7 years after their child’s death. Median age at death was 6 months (3.6 d to 20.4 yr). At end-of-life, 86% of children were intubated and 46% were receiving mechanical circulatory support. Seventy-eight percent died during withdrawal of life-sustaining interventions and 16% during resuscitative efforts. Parents realized that their child had no realistic chance of survival a median of 2 days prior to death (0–30 d). According to parents, 47% of children suffered “a great deal,” “a lot,” or “somewhat” during the end-of-life period. The symptoms parents perceived to be causing the most suffering were breathing and feeding difficulties in children under 2 years and fatigue and sleeping difficulties in older children. Seventy-one percent of parents described the quality of life of their child during the last month of life as “poor” or “fair.” Most parents (84%) described the quality of care delivered as “very good” or “excellent.” Conclusions: According to their parents, many children with advanced heart disease experience suffering in the end-of-life care period. For most, realization that their child has no realistic chance of survival does not occur until late, some not until death is imminent. Once this realization occurs, however, parents perceive peacefulness, a “good death,” and excellent quality of care. Strategies for improved communication around symptom management, quality of life, prognosis, and advance care planning are needed for families of children with advanced heart disease.

Developing Competencies for Pediatric Hospice and Palliative Medicine

In 2006, hospice and palliative medicine (HPM) became an officially recognized subspecialty. This designation helped initiate the Accreditation Council of Graduate Medical Education Outcomes Project in HPM. As part of this process, a group of expert clinician–educators in HPM defined the initial competency-based outcomes for HPM fellows (General HPM Competencies). Concurrently, these experts recognized and acknowledged that additional expertise in pediatric HPM would ensure that the competencies for pediatric HPM were optimally represented. To fill this gap, a group of pediatric HPM experts used a product development method to define specific Pediatric HPM Competencies. This article describes the development process. With the ongoing evolution of HPM, these competencies will evolve. As part of the Next Accreditation System, the Accreditation Council of Graduate Medical Education uses milestones as a framework to better define competency-based, measurable outcomes for trainees. Currently, there are no milestones specific to HPM, although the field is designing curricular milestones with multispecialty involvement, including pediatrics. These competencies are the conceptual framework for the pediatric content in the HPM milestones. They are specific to the pediatric HPM subspecialist and should be integrated into the training of pediatric HPM subspecialists. They will serve a foundational role in HPM and should inform a wide range of emerging innovations, including the next evolution of HPM Competencies, development of HPM curricular milestones, and training of adult HPM and other pediatric subspecialists. They may also inform pediatric HPM outcome measures, as well as standards of practice and performance for pediatric HPM interdisciplinary teams.

IMPACT OF EARLY PALLIATIVE CARE INTERVENTION ON MATERNAL STRESS IN MOTHERS OF INFANTS PRENATALLY DIAGNOSED WITH SINGLE VENTRICLE HEART DISEASE: A RANDOMIZED CLINICAL TRIAL

Children with single ventricle (SV) cardiac defects requiring staged palliation have a high risk of mortality and receive invasive and complex care, resulting in significant maternal stress. In other complex, life-limiting illnesses among children, pediatric palliative care (PPC) may mitigate