Linguistic validation of a disease-specific quality of life measure for children and teenagers with cardiac disease

Wray, Jo; Franklin, Rodney C. G.; Brown, Kate; Blyth, Jacqueline; Marino, Bradley S.

doi:10.1017/s1047951111000722

Cited by 10 publications

(15 citation statements)

References 8 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This was an ancillary study of the Pediatric Cardiac Quality of Life (PCQLI) validation study, a multicenter cross‐sectional survey assessing the QOL of pediatric patients with CHD and acquired heart disease . This sample consisted of patients enrolled from November 2004 to August 2009 at 9 tertiary care pediatric cardiovascular centers in the United States and the United Kingdom.…”

Section: Methodsmentioning

confidence: 99%

“…The PCQLI is a validated, disease‐specific QOL measure with patient self‐reporting and parent‐proxy reporting for pediatric patients (aged 8–18 years) with CHD or acquired heart disease . Higher PCQLI total score (0–100) and Disease Impact (DI) subscale (0–50), and Psychosocial Impact (PI) subscale (0–50) scores represent better respondent‐perceived patient QOL .…”

Section: Methodsmentioning

confidence: 99%

“…This was an ancillary study of the Pediatric Cardiac Quality of Life (PCQLI) validation study, a multicenter cross-sectional survey assessing the QOL of pediatric patients with CHD and acquired heart disease. 6,7,[15][16][17][18][19] This sample consisted of patients enrolled from November 2004 to August 2009 at 9 tertiary care pediatric cardiovascular centers in the United States and the United Kingdom. The institutional review boards and ethics committees of all participating institutions approved the study, and parents and patients gave informed consent and assent, as applicable.…”

Section: Methodsmentioning

confidence: 99%

“…The PCQLI is a validated, disease-specific QOL measure with patient self-reporting and parent-proxy reporting for pediatric patients (aged 8-18 years) with CHD or acquired heart disease. 6,7,[15][16][17][18][19] Higher PCQLI total score (0-100) and Disease Impact (DI) subscale (0-50), and Psychosocial Impact (PI) subscale (0-50) scores represent better respondentperceived patient QOL. 7 The appropriate forms were administered to all enrolled participants by trained research personnel prior to an outpatient cardiology visit.…”

Section: Outcome Variablesmentioning

confidence: 99%

See 3 more Smart Citations

Impact of Surgical Complexity on Health‐Related Quality of Life in Congenital Heart Disease Surgical Survivors

O'Connor

Wray

Tomlinson

et al. 2016

JAHA

Self Cite

View full text Add to dashboard Cite

BackgroundSurgical complexity and related morbidities may affect long‐term patient quality of life (QOL). Aristotle Basic Complexity (ABC) score and Risk Adjustment in Congenital Heart Surgery (RACHS‐1) category stratify the complexity of pediatric cardiac operations. The purpose of this study was to examine the relationship between surgical complexity and QOL and to investigate other demographic and clinical variables that might explain variation in QOL in pediatric cardiac surgical survivors.Methods and ResultsPediatric Cardiac Quality of Life (PCQLI) study participants who had undergone cardiac surgery were included. The PCQLI database provided sample characteristics and QOL scores. Surgical complexity was defined by the highest ABC raw score or RACHS‐1 category. Relationships among surgical complexity and demographic, clinical, and QOL variables were assessed using ordinary least squares regression. A total of 1416 patient–parent pairs were included. Although higher ABC scores and RACHS‐1 categories were associated with lower QOL scores (P<0.005), correlation with QOL scores was poor to fair (r=−0.10 to −0.29) for all groups. Ordinary least squares regression showed weak association with R 2=0.06 to R 2=0.28. After accounting for single‐ventricle anatomy, number of doctor visits, and time since last hospitalization, surgical complexity scores added no additional explanation to the variance in QOL scores.Conclusions ABC scores and RACHS‐1 categories are useful tools for morbidity and mortality predictions prior to cardiac surgery and quality of care initiatives but are minimally helpful in predicting a child's or adolescent's long‐term QOL scores. Further studies are warranted to determine other predictors of QOL variation.

show abstract

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Outcome Variablesmentioning

confidence: 99%

See 2 more Smart Citations

Impact of Surgical Complexity on Health‐Related Quality of Life in Congenital Heart Disease Surgical Survivors

O'Connor

Wray

Tomlinson

et al. 2016

JAHA

Self Cite

View full text Add to dashboard Cite

show abstract

“…Аналогичные резуль-таты получены J. Wray и соавт. в ходе лингвистической валидации британской версии опросника [14].…”

Section: вопросы современной педиатрииunclassified

Linguistic Ratification and Validation of Pediatric Quality of Life Inventory 3.0 Cardiac Module

Chernikov¹,

Винярская²,

Соболева³

et al. 2016

Vopr. sovr. pediatr.

View full text Add to dashboard Cite

Научный центр здоровья детей, Москва, Российская Федерация In a prospective study it was assessed the reliability of the questionnaire (calculating Cronbach's alpha coefficient), its validityby comparing the responses of patients who had a different ejection fraction (construct validity), and comparing the responses on the scales of PedsQL Cardiac Module questionnaire with the scales of the common PedsQL Generic Core Scale questionnaire (convergent validity). The questionnaire sensitivity was determined by calculating the difference between the values of quality of life of children at the moment of their first hospitalization (1st point) and in 4 months after the initiation of combination therapy (2nd point).Results: The study involved 61 children with heart failure (chronic myocarditis -25, dilated cardiomyopathy -36

show abstract

Biopsychosocial Predictors of Quality of Life Outcomes in Pediatric Congenital Heart Disease

et al. 2017

View full text Add to dashboard Cite

The purpose of this prospective multi-center cross-sectional study was to identify key biopsychosocial factors that impact quality of life (QOL) of youth with congenital heart disease (CHD). Patient-parent pairs were recruited at a regular hospital follow-up visit. Patient- and parent-proxy-reported QOL were assessed using the Pediatric Cardiac Quality of Life Inventory (PCQLI). Wallander's and Varni's disability-stress coping model guided factor selection, which included disease factors, educational impairment, psychosocial stress, child psychological and parent/family factors. Measures utilized for these factors included the Pediatric Inventory for Parents, Self-Perception Profile for Children/Adolescents, Child Behavior Checklist, Revised Children's Manifest Anxiety Scale, Child PTSD Symptom Scale, State-Trait Anxiety Inventory, and Posttraumatic Diagnostic Scale. Ordinary least squares regression was applied to test the theoretical model, with backwards stepwise elimination process. The models accounted for a substantial amount of variance in QOL (Patient-reported PCQLI R = 0.58, p< 0.001; Parent-proxy-reported PCQLI R = 0.60, p< 0.001). For patient-reported QOL, disease factors, educational impairment, poor self-esteem, anxiety, patient posttraumatic stress, and parent posttraumatic stress were associated with lower QOL. For parent-proxy-report QOL, disease factors, educational impairment, greater parental medical stress, poorer child self-esteem, more child internalizing problems, and parent posttraumatic stress were associated with lower QOL. The results highlight that biopsychosocial factors account for over half the variance in QOL in CHD survivors. Assessing and treating psychological issues in the child and the parent may have a significant positive impact on QOL.

show abstract

Linguistic validation of a disease-specific quality of life measure for children and teenagers with cardiac disease

Cited by 10 publications

References 8 publications

Impact of Surgical Complexity on Health‐Related Quality of Life in Congenital Heart Disease Surgical Survivors

Impact of Surgical Complexity on Health‐Related Quality of Life in Congenital Heart Disease Surgical Survivors

Linguistic Ratification and Validation of Pediatric Quality of Life Inventory 3.0 Cardiac Module

Biopsychosocial Predictors of Quality of Life Outcomes in Pediatric Congenital Heart Disease

Contact Info

Product

Resources

About