Adapting a quality of life scale for children and young people with Down syndrome in Chile

被引：1

作者：

Urrutia, Macarena Jofre ^{[1
]}

Bedregal, Paula ^{[2
]}

Lizama, Macarena ^{[1
,3
]}

机构：

[1] Pontificia Univ Catolica Chile, Sch Med, Dept Pediat, Santiago, Chile

[2] Pontificia Univ Catolica Chile, Sch Med, Publ Hlth Dept, Santiago, Chile

[3] Ctr UC Sindrome Down, Santiago, Chile

来源：

AMERICAN JOURNAL OF MEDICAL GENETICS PART A | 2024年 / 194卷 / 02期

关键词：

Down syndrome; psychometric; quality of life; INTELLECTUAL DISABILITIES; HEALTH; VALIDATION; WHOQOL; STATES;

D O I：

10.1002/ajmg.a.63414

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

In Chile, there are no validated instruments for the evaluation of quality of life (QoL) of people with Down syndrome (DS). To analyze construct validity and reliability of the KidsLife-Down scale in Chile to measure QoL in people with DS aged from 4 to 21 years. Families of boys, girls, and young people with DS between 4 and 21 years were invited to participate. The scale was answered by relatives or caregivers. To assess the internal consistency, reliability tests were performed using Cronbach's alpha coefficient. A confirmatory factor analysis was performed. The scale was answered by 531 relatives or caregivers. Cronbach's coefficient was greater than 0.7 in all the items. The confirmatory factor analysis of the scale allowed its validation for clinical use in the Chilean population. "Kids Life Down-Chile" scale has adequate psychometric properties to be used in clinical practice and to help us improve QoL with better support strategies.

引用

页码：233 / 242

页数：10

共 49 条

[1] Transcultural adaptation and validation of a satisfaction with life scale for chilean adolescents [J].

Alvarez, Carola A. ;

Briceno, Ana M. ;

Alvarez, Karla ;

Abufhele, Marcela ;

Delgado, Iris .

REVISTA CHILENA DE PEDIATRIA-CHILE, 2018, 89 (01) :51-58

[2]

[Anonymous], 1996, World Health Forum, V17, P354

[3]

Herrera OA, 2020, REV MED CHILE, V148, P279, DOI 10.4067/S0034-98872020000300279

[4] Quality of life from the point of view of Latin American families:: a participative research study [J].

Aznar, AS ;

Castañón, DG .

JOURNAL OF INTELLECTUAL DISABILITY RESEARCH, 2005, 49 :784-788

[5] Family Quality of Life Scale (FQLS): validation and analysis in a Chilean population [J].

Bello-Escamilla, Natalia ;

Rivadeneira, Joucelyn ;

Concha-Toro, Marcela ;

Soto-Caro, Ariel ;

Diaz-Martinez, Ximena .

UNIVERSITAS PSYCHOLOGICA, 2017, 16 (04) :1-10

[6] Quality of Life: Changes in Self-Perception in People with down Syndrome as a Result of Being Part of a Football/Soccer Team. Self-Reports and External Reports [J].

Camacho, Rocio ;

Castejon-Riber, Cristina ;

Requena, Francisco ;

Camacho, Julio ;

Escribano, Begona M. ;

Gallego, Arturo ;

Espejo, Roberto ;

De Miguel-Rubio, Amaranta ;

Aguera, Estrella, I .

BRAIN SCIENCES, 2021, 11 (02) :1-18

[7]

Carvajal A, 2011, AN SIST SANIT NAVAR, V34, P63, DOI 10.4321/s1137-66272011000100007

[8] Adjustment of the Integral Scale of life Quality in persons with intellectual disability and the development in Chilean population [J].

Castro, Lilian ;

Vallejos, Viviana ;

Casas, Jose A. ;

Cerda, Gamal ;

Sanchez, Sergio ;

Zuniga, Daniela .

TERAPIA PSICOLOGICA, 2017, 35 (03) :231-237

[9] Survey Outcomes and Cross-National Comparisons of Quality of Life With Respect to People With Intellectual Disabilities in Taiwan [J].

Chou, Yueh-Ching ;

Schalock, Robert .

JOURNAL OF POLICY AND PRACTICE IN INTELLECTUAL DISABILITIES, 2009, 6 (01) :7-10

[10] Stressors associated with the COVID-19 pandemic, disability, and mental health: Considerations from the Intermountain West [J].

Ciciurkaite, Gabriele ;

Marquez-Velarde, Guadalupe ;

Brown, Robyn Lewis .

STRESS AND HEALTH, 2022, 38 (02) :304-317

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