Michelle M Ernst1, Melissa Gardner2, Constance A Mara3, Emmanuèle C Délot4, Patricia Y Fechner5, Michelle Fox6, Meilan M Rutter7, Phyllis W Speiser8, Eric Vilain4, Erica M Weidler9,10, David E Sandberg2. 1. Department of Pediatrics, University of Cincinnati College of Medicine, and Disorders of Sex Development Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA, michelle.ernst@cchmc.org. 2. Department of Pediatrics and Communicable Diseases and the Child Health Evaluation and Research Center, University of Michigan Medical School, Ann Arbor, Michigan, USA. 3. Department of Pediatrics, University of Cincinnati College of Medicine, and Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA. 4. Center for Genetic Medicine Research, Children's National Medical Center, Washington, District of Columbia, USA. 5. Department of Pediatrics, University of Washington, Seattle Children's DSD Program, Seattle, Washington, USA. 6. Department of Pediatrics, UCLA School of Medicine, Los Angeles, California, USA. 7. Department of Pediatrics, University of Cincinnati College of Medicine, and Disorders of Sex Development Center, Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio, USA. 8. Department of Pediatrics, Cohen Children's Medical Center of New York and Zucker School of Medicine at Hofstra University, New Hyde Park, New York, USA. 9. Department of Pediatric Surgery, Phoenix Children's Hospital, Phoenix, Arizona, USA. 10. Accord Alliance, Whitehouse Station, New Jersey, USA.
Abstract
BACKGROUND/AIMS: Utilization of a psychosocial screener to identify families affected by a disorder/difference of sex development (DSD) and at risk for adjustment challenges may facilitate efficient use of team resources to optimize care. The Psychosocial Assessment Tool (PAT) has been used in other pediatric conditions. The current study explored the reliability and validity of the PAT (modified for use within the DSD population; PAT-DSD). METHODS: Participants were 197 families enrolled in the DSD-Translational Research Network (DSD-TRN) who completed a PAT-DSD during a DSD clinic visit. Psychosocial data were extracted from the DSD-TRN clinical registry. Internal reliability of the PAT-DSD was tested using the Kuder-Richardson-20 coefficient. Validity was examined by exploring the correlation of the PAT-DSD with other measures of caregiver distress and child emotional-behavioral functioning. RESULTS: One-third of families demonstrated psychosocial risk (27.9% "Targeted" and 6.1% "Clinical" level of risk). Internal reliability of the PAT-DSD Total score was high (α = 0.86); 4 of 8 subscales met acceptable internal reliability. A priori predicted relationships between the PAT-DSD and other psychosocial measures were supported. The PAT-DSD Total score related to measures of caregiver distress (r = 0.40, p < 0.001) and to both caregiver-reported and patient self-reported behavioral problems (r = 0.61, p < 0.00; r = 0.37, p < 0.05). CONCLUSIONS: This study provides evidence for the reliability and validity of the PAT-DSD. Given variability in the internal reliability across subscales, this measure is best used to screen for overall family risk, rather than to assess specific psychosocial concerns.
BACKGROUND/AIMS: Utilization of a psychosocial screener to identify families affected by a disorder/difference of sex development (DSD) and at risk for adjustment challenges may facilitate efficient use of team resources to optimize care. The Psychosocial Assessment Tool (PAT) has been used in other pediatric conditions. The current study explored the reliability and validity of the PAT (modified for use within the DSD population; PAT-DSD). METHODS:Participants were 197 families enrolled in the DSD-Translational Research Network (DSD-TRN) who completed a PAT-DSD during a DSD clinic visit. Psychosocial data were extracted from the DSD-TRN clinical registry. Internal reliability of the PAT-DSD was tested using the Kuder-Richardson-20 coefficient. Validity was examined by exploring the correlation of the PAT-DSD with other measures of caregiver distress and child emotional-behavioral functioning. RESULTS: One-third of families demonstrated psychosocial risk (27.9% "Targeted" and 6.1% "Clinical" level of risk). Internal reliability of the PAT-DSD Total score was high (α = 0.86); 4 of 8 subscales met acceptable internal reliability. A priori predicted relationships between the PAT-DSD and other psychosocial measures were supported. The PAT-DSD Total score related to measures of caregiver distress (r = 0.40, p < 0.001) and to both caregiver-reported and patient self-reported behavioral problems (r = 0.61, p < 0.00; r = 0.37, p < 0.05). CONCLUSIONS: This study provides evidence for the reliability and validity of the PAT-DSD. Given variability in the internal reliability across subscales, this measure is best used to screen for overall family risk, rather than to assess specific psychosocial concerns.
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