Psychosocial functioning and quality of life in children and families affected by AEC syndrome.

Ankyloblepharon-ectodermal defects-cleft lip/palate (AEC) syndrome, also known as Hay-Wells syndrome, is a rare genetic condition that results in abnormalities of the skin, hair, nails, and teeth and requires frequent self-management and medical care. We sought to describe the psychological adjustment and quality of life in children and adolescents with AEC syndrome, as well as the impact of the child's illness on their families. The sample included 18 children and adolescents with AEC syndrome and their parents who attended the International Research Symposium on AEC syndrome.

Report from a multi-institutional randomized clinical trial examining computer-assisted problem-solving skills training for English- and Spanish-speaking mothers of children with newly diagnosed cancer.

Objectives: To evaluate the feasibility and efficacy of a handheld personal digital assistant (PDA)-based supplement for maternal Problem-Solving Skills Training (PSST) and to explore Spanish-speaking mothers' experiences with it.

Methods: Mothers (n = 197) of children with newly diagnosed cancer were randomized to traditional PSST or PSST + PDA 8-week programs. Participants completed the Social Problem-Solving Inventory-Revised, Beck Depression Inventory-II, Profile of Mood States, and Impact of Event Scale-Revised pre-, post-treatment, and 3 months after completion of the intervention.

The PedsQL Present Functioning Visual Analogue Scales: preliminary reliability and validity.

Background: The PedsQL Present Functioning Visual Analogue Scales (PedsQL VAS) were designed as an ecological momentary assessment (EMA) instrument to rapidly measure present or at-the-moment functioning in children and adolescents. The PedsQL VAS assess child self-report and parent-proxy report of anxiety, sadness, anger, worry, fatigue, and pain utilizing six developmentally appropriate visual analogue scales based on the well-established Varni/Thompson Pediatric Pain Questionnaire (PPQ) Pain Intensity VAS format.

Methods: The six-item PedsQL VAS was administered to 70 pediatric patients ages 5-17 and their parents upon admittance to the hospital environment (Time 1: T1) and again two hours later (Time 2: T2).

Pain, fatigue, and school functioning in children with cerebral palsy: a path-analytic model.

Objective: This study tests a model of how pain and fatigue, independently or in combination, relate to school functioning in pediatric cerebral palsy (CP).

Methods: One hundred eighty-nine parents of children with CP completed the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the PedsQL 3.

The PedsQL in pediatric cerebral palsy: reliability, validity, and sensitivity of the Generic Core Scales and Cerebral Palsy Module.

This investigation determined the measurement properties of the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cerebral Palsy (CP) Module. PedsQL 4.

Health-related quality of life of children and adolescents with cerebral palsy: hearing the voices of the children.

The aim of the study was to determine whether pediatric patients with cerebral palsy (CP; 24.3% hemiplegic, 30.4% diplegic, 38.

The PedsQL Family Impact Module: preliminary reliability and validity.

Background: The PedsQL Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL 4.0 Generic Core Scales were developed to be integrated with the PedsQL Disease-Specific Modules.

Evaluation of the built environment at a children's convalescent hospital: development of the Pediatric Quality of Life Inventory parent and staff satisfaction measures for pediatric health care facilities.

In preparation for the design, construction, and postoccupancy evaluation of a new Children's Convalescent Hospital, focus groups were conducted and measurement instruments were developed to quantify and characterize parent and staff satisfaction with the built environment of the existing pediatric health care facility, a 30-year-old, 59-bed, long-term, skilled nursing facility dedicated to the care of medically fragile children with complex chronic conditions. The measurement instruments were designed in close collaboration with parents, staff, and senior management involved with the existing and planned facility. The objectives of the study were to develop pediatric measurement instruments that measured the following: (1) parent and staff satisfaction with the built environment of the existing pediatric health care facility, (2) parent satisfaction with the health care services provided to their child, and (3) staff satisfaction with their coworker relationships.