Sandra A. Sherman

The PedsQL Family Impact Module: preliminary reliability and validity.

BackgroundThe 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. The newly developed PedsQL™ Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL™ Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships.MethodsThe 36-item PedsQL™ Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families.ResultsInternal consistency reliability was demonstrated for the PedsQL™ Family Impact Module Total Scale Score (α = 0.97), Parent HRQOL Summary Score (α = 0.96), Family Functioning Summary Score (α = 0.90), and Module Scales (average α = 0.90, range = 0.82 – 0.97). The PedsQL™ Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home.ConclusionsThe results demonstrate the preliminary reliability and validity of the PedsQL™ Family Impact Module in families with children with complex chronic health conditions. The PedsQL™ Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.

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, 38.5% quadriplegic) can self-report their health-related quality of life (HRQOL) with the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) Generic Core Scales. The PedsQL was administered to 148 families (84 males, 64 females; mean 10y, SD 3y 9mo, range 5 to 18y) recruited from a childrens hospital clinic and state medical therapy clinics. Sixty-nine children (47%) were able to self-report. Children with CP self-reported a significantly lower HRQOL (mean 65.9) than healthy children (mean 83.8). Children with CP self-reported a similar HRQOL to pediatric cancer patients receiving treatment (mean 68.9). Children diagnosed with quadriplegia (mean 49.4) self-reported more impaired HRQOL than children with diplegia (mean 69.1) and hemiplegia (mean 72.4). Parent-child concordance was lowest for emotional functioning. Providers and parents should obtain the childrens HRQOL perceptions whenever possible.

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 4.0 Generic Core Scales and 3.0 CP Module were administered to 245 families. Mean age of the 134 males and 107 females was 8 years 1 month (SD 4y 4mo; range 2-18y). The sample included children with hemiplegia (n=55), diplegia (n=84), and quadriplegia (n=85). Twenty eight children had a Gross Motor Function Classification System classification at Level I, 40 at Level II, 86 at Level III, 43 at Level IV, and 37 at Level V. Reliability was demonstrated for the PedsQL 4.0 (alpha=0.86 child, 0.89 parent) and CP Module (alpha=0.79 child, 0.91 parent). The PedsQL 4.0 distinguished between healthy children and children with CP. Construct validity of the CP Module was supported. Sensitivity of the PedsQL was demonstrated among children with different diagnostic categories and gross motor function.

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. The newly developed Pediatric Quality of Life Inventory™ scales demonstrated internal consistency reliability (average α = 0.92 parent report, 0.93 staff report) and initial construct validity. As anticipated, parents and staff were not satisfied with the existing facility, providing detailed qualitative and quantitative data input to the design of the planned facility and a baseline for postoccupancy evaluation of the new facility. Consistent with the a priori hypotheses, higher parent satisfaction with the built environment structure and aesthetics was associated with higher parent satisfaction with health care services (r = .54, p < .01; r = .59, p < .01, respectively). Higher staff satisfaction with the built environment structure and aesthetics was associated with higher coworker relationship satisfaction (r = .53; p < .001; r = .51; p < .01, respectively). The implications of the findings for the architectural design and evaluation of pediatric health care facilities are discussed.

The stress-reducing effects of art in pediatric health care: art preferences of healthy children and hospitalized children

Art is assumed to possess therapeutic benefits of healing for children, as part of patient-focused design in health care. Since the psychological and physiological well-being of children in health care settings is extremely important in contributing to the healing process, it is vitally important to identify what type of art supports stress reduction. Based on adult studies, nature art was anticipated to be the most preferred and to have stress-reducing effects on pediatric patients. Nature art refers to art images dominated by natural vegetation, flowers or water. The objective of this study was to investigate what type of art image children prefer, and what type of art image has potentially stress-reducing effects on children in hospitals. This study used a three-phase, multi-method approach with children aged 5—17 years: a focus group study (129 participants), a randomized study (48 participants), and a quasi-experimental study design (48 participants). Findings were evaluated from three phases.

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 childs 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. Parents completed standardized self‐report questionnaires about child and family functioning and participated in a semi‐structured interview about the childs cognitive and social functioning and the impact of AEC syndrome on the child and family. Children completed standardized self‐report questionnaires of psychosocial functioning and quality of life. Overall, results reflected a range of functioning across children and families, with some families reporting few ill effects of the condition and others describing reduced quality of life and negative impact on child and family. Identifying the domains that may be impacted should help clinicians better screen for problems in functioning of children affected by AEC syndrome and their families.