Psychosocial Screening in Disorders/Differences of Sex Development: Psychometric Evaluation of the Psychosocial Assessment Tool

被引:16
|
作者
Ernst, Michelle M. [1 ,2 ]
Gardner, Melissa [3 ,4 ]
Mara, Constance A. [1 ,5 ]
Delot, Emmanuele C. [6 ]
Fechner, Patricia Y. [7 ]
Fox, Michelle [8 ]
Rutter, Meilan M. [1 ,2 ]
Speiser, Phyllis W. [9 ,10 ]
Vilain, Eric [6 ]
Weidler, Erica M. [11 ,12 ]
Sandberg, David E. [3 ,4 ]
Delot, Emmanuele
Di-Sandro, Michael
Finlayson, Courtney
Gomez-Lobo, Veronica
Green, Janet
Rosenthal, Stephen
Shnorhavorian, Margarett
Speiser, Phyllis
van Leeuwen, Kathy
Chen, Diane
Devore, Tiger
Ferren, Peter
Foley, Carmel
Goldberg, Elaine
Kearns, Sue
Kennedy, Kim
Mazur, Tom
McCauley, Elizabeth
Muscarella, Miriam
Ramsdell, Linda
Rosario, Vernon
Sharp, Melissa
Yashar, Beverly
机构
[1] Univ Cincinnati, Coll Med, Dept Pediat, Cincinnati, OH USA
[2] Cincinnati Childrens Hosp Med Ctr, Disorders Sex Dev Ctr, Cincinnati, OH 45229 USA
[3] Univ Michigan, Sch Med, Dept Pediat & Communicable Dis, Ann Arbor, MI USA
[4] Univ Michigan, Sch Med, Child Hlth Evaluat & Res Ctr, Ann Arbor, MI USA
[5] Cincinnati Childrens Hosp Med Ctr, Div Behav Med & Clin Psychol, Cincinnati, OH 45229 USA
[6] Childrens Natl Med Ctr, Med Genet Res Ctr, Washington, DC 20010 USA
[7] Univ Washington, Dept Pediat, Seattle Childrens DSD Program, Seattle, WA 98195 USA
[8] Univ Calif Los Angeles, Sch Med, Dept Pediat, Los Angeles, CA 90024 USA
[9] Cohen Childrens Med Ctr New York, Dept Pediat, New Hyde Pk, NY USA
[10] Hofstra Univ, Zucker Sch Med, New Hyde Pk, NY USA
[11] Phoenix Childrens Hosp, Dept Pediat Surg, Phoenix, AZ USA
[12] Accord Alliance, Whitehouse Stn, NJ USA
来源
HORMONE RESEARCH IN PAEDIATRICS | 2018年 / 90卷 / 06期
关键词
Disorders of sex development; Interdisciplinary care; Intersex; Screening; Psychometric evaluation; QUALITY-OF-LIFE; DEVELOPMENT DSD; INTERDISCIPLINARY CARE; PEDIATRIC CANCER; DISORDERS; RISK; CHILDREN; HEALTH; PARENTS; MANAGEMENT;
D O I
10.1159/000496114
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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 (alpha = 0.86); 4 of 8 subscales met acceptable internal reliability. A priori predicted relationships between 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 (alpha = 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 sub-scales, this measure is best used to screen for overall family risk, rather than to assess specific psychosocial concerns. (c) 2019 S. Karger AG, Basel
引用
收藏
页码:368 / 380
页数:13
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