A Narrative Review of Pediatric Respite Care Initiatives in the United States.

Families of children receiving palliative care depict lack of respite services as a top unmet need. Although the benefits of access to respite services are notable, little is known on a state-by-state basis about respite provision or funding. The study objective was to conduct a national evaluation of pediatric respite care programs to identify and describe how states provide and fund respite care for children. The study approach adhered to the Scale for the Assessment of Narrative Review Articles quality standards using multiple data sources including engagement with the existing literature, content analyses of public-facing websites, and conversations with 40 stakeholders from 15 states. States offered respite services in a variety of ways: Medicaid waivers used to fund respite care, state-funded programs that provide respite, and philanthropy-based respite facilities. This narrative review revealed the creativity involved in different settings to improve respite access, staffing, and reimbursement. Suggestions to address the unmet respite needs of families included establishing a respite home, improving Medicaid reimbursement, expanding Medicaid waiver eligibility, providing a respite benefit through Medicaid, implementing nursing workforce initiatives, and centralizing staffing databases.

Associations between symptoms of inattention, hyperactivity, restless legs, and periodic leg movements.

STUDY OBJECTIVES: Attention-deficit/hyperactivity disorder (ADHD) has shown associations with restless legs syndrome (RLS) and periodic leg movements during sleep (PLMS) among small samples of referred children, but whether RLS or PLMS are common more generally among hyperactive children has not been well studied. DESIGN: Cross-sectional survey. SETTING: Two university-affiliated but community-based general pediatrics clinics. PATIENTS: N=866 children (469 boys), aged 2.0 to 13.9 years (mean 6.8+/-3.2 years), with clinic appointments. INTERVENTIONS: N/A. MEASUREMENTS: A validated Pediatric Sleep Questionnaire assessed for PLMS (a 6-item subscale), restless legs, growing pains, and several potential confounds of an association between behavior and PLMS or RLS. Parents also completed two common behavioral measures, a DSM-IV-derived inattention/hyperactivity scale (IHS) and the hyperactivity index (HI, expressed as a t-score) of the Conners' Parent Rating Scale. RESULTS: Restless legs were reported in 17% (95% C.I. [15, 20]) of the subjects. Positive HI scores (>60) were found in 13% [11, 16] of all subjects, 18% [12, 25] of children with restless legs, and 11% [9, 14] of children without restless legs (chi-square p<0.05). Odds ratios between HI>60 and each of the following were: a one-s.d. increase in the overall PLMS score, 1.6 [1.4, 1.9]; restless legs, 1.9 [1.1, 3.2]; and growing pains, 1.9 [0.9, 3.6] (all age and sex-adjusted). Results were similar for high IHS scores (>1.25). The associations between each behavioral measure and the PLMS score retained significance after statistical adjustment for sleepiness, snoring, restless sleep in general, or stimulant use. CONCLUSIONS: Inattention and hyperactivity among general pediatric patients are associated with symptoms of PLMS and RLS. If either condition contributes to hyperactivity, the magnitude of association suggests an important public health problem.

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.

Predictors of depressive symptoms in parents of chronically ill children admitted to the pediatric intensive care unit.

OBJECTIVE: To identify factors in the pediatric intensive care unit (PICU) patient population that may result in increased risk of depressive symptoms in their parents. DESIGN: Six-month, prospective, observational study in a tertiary-level PICU on parents of chronically ill children admitted to PICU. Parents were assessed by background questionnaire and standardized depression scale. RESULTS: Data was compared to various markers such as child's diagnosis, admission reason, palliative care diagnosis type (ACT code), and course/length of disease. Incidence of depressive symptoms in parents was inversely correlated with duration of child's chronic illness. Parents of children admitted for planned postoperative management were more likely to report depressive symptoms compared to parents of children admitted for acute changes in health. CONCLUSION: Parents of certain chronically ill children may benefit from routine screening for depression.

Symptoms of sleep disturbances among children at two general pediatric clinics.

OBJECTIVE: We assessed the frequency of childhood sleep problems at 2 general pediatric clinics. STUDY DESIGN: Parents of 1038 unselected children (554 boys) aged 2.0 to 13.9 years completed a validated Pediatric Sleep Questionnaire while waiting for appointments. RESULTS: Habitual snoring was reported in 176 (17%) of the children. Criterion scores suggestive of sleep-disordered breathing were found in 115 (11%) of the children, in 29% of children at the clinic for neurologic indications, and in 21% of children at the clinic for noninfectious respiratory indications. Insomnia (ie, unrefreshing sleep or difficulty with sleep onset, sleep maintenance, or early morning awakening from sleep) was reported in 430 (41%) of the children; > or =2 symptoms were present in 191 (18%) of the children. Excessive daytime sleepiness was suggested in 148 (14%) of the children, and 390 (38%) had symptoms of sleep terrors, sleepwalking, or nocturnal bruxism. CONCLUSIONS: Sleep problems such as sleep-disordered breathing, insomnia, excessive sleepiness, and parasomnias are frequent among children seen at general pediatric practices.

Inattention, hyperactivity, and symptoms of sleep-disordered breathing.

OBJECTIVE: Inattention and hyperactivity are frequent among children with sleep-disordered breathing (SDB) and often improve when SDB is treated. However, the frequency of SDB symptoms among inattentive and hyperactive children has received little study. DESIGN: Cross-sectional survey. SETTING: Two university-affiliated but community-based general pediatrics clinics. PATIENTS: Patients consisted of N = 866 children (469 boys), aged 2.0 to 13.9 years (mean: 6.8 plus minus 3.2 years), with clinic appointments. MEASURES: A validated Pediatric Sleep Questionnaire assessed for habitual snoring (1 item), snoring severity (a 4-item subscale), sleepiness (4 items), and overall risk of SDB (16 items). Parents also completed 2 common behavioral measures, an inattention/hyperactivity scale (IHS) derived from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, and the hyperactivity index (HI, expressed as a t score) of the Conners' Parent Rating Scale. RESULTS: Habitual snoring was reported in 16% (95% confidence interval [CI]: 13, 19) of the participants. High HI scores (>60) were found in 13% (95% CI: 11, 16) of all participants, 22% (95% CI: 15, 29) of habitual snorers, and 12% (95% CI: 9, 14) of nonsnorers. Odds ratios between HI >60 and each of the following were: habitual snoring, 2.2 (95% CI: 1.4, 3.6); 1 additional positive symptom-item on the snoring scale, 1.3 (95% CI: 1.1, 1.5); 1 additional positive item on the sleepiness scale, 1.6 (95% CI: 1.4, 2.0); and a 1-standard deviation increase in the overall SDB score, 1.7 (95% CI: 1.4, 2.0; all odds ratios age- and sex-adjusted). Results were similar for high IHS scores (>1.25). Stratification by age and sex showed that most of the association with snoring (but not sleepiness) derived from boys <8 years old. CONCLUSIONS: Inattention and hyperactivity among general pediatric patients are associated with increased daytime sleepiness and---especially in young boys---snoring and other symptoms of SDB. If sleepiness and SDB do influence daytime behavior, the current results suggest a major public health impact.