Use of the Pediatric Quality of Life Inventory to Assess the Health-Related Quality of Life in Children with Recurrent Respiratory Papillomatosis

2005 ◽  
Vol 114 (7) ◽  
pp. 499-503 ◽  
Author(s):  
Jonathan P. Lindman ◽  
Linda S. Lewis ◽  
Neil Accortt ◽  
Brian J. Wiatrak
Keyword(s):  
Quality Of Life ◽  
Psychosocial Health ◽  
School Functioning ◽  
Healthy Children ◽  
Quality Of Life Inventory ◽  
Parent Proxy Report ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Objectives: The objective of this study was to use the Pediatric Quality of Life Inventory (PedsQL), a 23-question modular instrument designed to measure the health-related quality of life (HRQOL) in children and adolescents, to compare the HRQOL in children with recurrent respiratory papillomatosis (RRP) with the HRQOLs reported for healthy children and children with other chronic medical conditions. Methods: The PedsQL version 4.0 Generic Core Scales consist of 23 questions in 4 subscales (Physical, Emotional, Social, and School Functioning) for parent-proxy reporting on the HRQOL in children ages 2 to 4 years, parent reporting for children 5 to 18 years, and child self-reporting for ages 5 to 7 years (age-adjusted questions and rating scales) and 8 to 18 years. The questionnaires were administered in person or by telephone to 22 children with RRP and (or, for children 2 to 4 years of age) one parent recruited from a tertiary pediatric otolaryngology practice. The results were compared with validated norms for healthy children and scores for children whose parents reported a chronic medical condition. Results: Compared with healthy controls, the children 5 to 18 years of age with RRP self-reported a significantly (p < .05) worse HRQOL as measured by the PedsQL Total Score, Psychosocial Health score (a combination of Emotional, Social, and School Functioning Scores), and Social Functioning and School Functioning scores. Self-reported scores for the children 5 to 18 years of age with RRP compared with children with other chronic illnesses followed the same trend, and the difference approached statistical significance (p = .05) for the School Functioning Subscale scores. The parent-proxy report (for children 2 to 18 years of age) scores for children with RRP were significantly lower (p < .0001) on every scale and in total compared with scores for healthy children. Compared with scores of children with other chronic medical conditions, the parent-proxy report scores were significantly lower for psychosocial health (p = .005) and school functioning (p<.0001). Conclusions: Children with RRP report a lower quality of life than do those who are healthy, and a quality of life similar to that of those who have other chronic medical problems. The parent reports also reflect a lower quality of life for children affected by this disease, as compared with healthy children. The PedsQL demonstrated a statistically significant low HRQOL in children with RRP; however, the clinical implications of this finding appear trivial. A distinct, disease-specific survey for RRP, if developed, would have enhanced responsiveness and sensitivity to change (due to the natural course of the disease and/or surgical treatments).

scholarly journals Parents' Perception of Health-Related Quality of Life in Children With Cochlear Implants: The Impact of Language Skills and Hearing

2018 ◽  
Vol 61 (8) ◽  
pp. 2084-2098 ◽  
Author(s):  
Christiane Lingås Haukedal ◽  
Janne von Koss Torkildsen ◽  
Björn Lyxell ◽  
Ona Bø Wie
Keyword(s):  
Quality Of Life ◽  
Cochlear Implants ◽  
Language Skills ◽  
School Functioning ◽  
Quality Of Life Inventory ◽  
Related Quality ◽  
Health Related ◽  
Spoken Language Skills ◽  
Life Inventory

Purpose The study compared how parents of children with cochlear implants (CIs) and parents of children with normal hearing perceive their children's health-related quality of life (HR-QOL). Method The sample consisted of 186 Norwegian-speaking children in the age span of 5;0–12;11 (years;months): 106 children with CIs (53% boys, 47% girls) and 80 children with normal hearing (44% boys, 56% girls). No children had known additional disabilities affecting language, cognitive development, or HR-QOL. Parents completed the generic questionnaire Pediatric Quality of Life Inventory (Varni, Seid, & Kurtin, 2001), whereas children completed a test battery measuring different aspects of language and hearing. Results Parents of children with CIs reported statistically significantly poorer HR-QOL in their children, on Pediatric Quality of Life Inventory total score and the subdomains social functioning and school functioning. Roughly 50% of parents of children with CIs reported HR-QOL levels (total score) within normal limits. No significant differences between groups emerged on the physical health and emotional functioning subscales. For the children in the group with CIs, better speech perception in everyday situations was associated with higher proxy-ratings of HR-QOL. Better spoken language skills were weakly to moderately associated with higher HR-QOL. Conclusions The findings suggest that the social and school situation is not yet resolved satisfactorily for children with CIs. Habilitation focusing on spoken language skills and better sound environment may improve social interactions with peers and overall school functioning.

scholarly journals Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Qisheng Gao ◽  
Shanshan Wang ◽  
Jianping Ren ◽  
Xin Wen
Keyword(s):  
Quality Of Life ◽  
Rare Diseases ◽  
Physical Functioning ◽  
Psychosocial Health ◽  
Self Report ◽  
School Functioning ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Parent Proxy

Abstract Background It has become increasingly important to measure the health-related quality of life (HRQoL) of rare diseases in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of a specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients, and to understand the problems of most concern. Methods A total of 651 children aged from 2 to 18 were enrolled from the Children’s Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-report version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™ 4.0). Independent samples t-test, one-way ANOVA, or Kruskal–Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercept were applied to analyze the relationship between socioeconomic variables and both the total score and subdomain scores. Results The total PedsQL scores of Patent ductus arteriosus (PDA), Infantile agranulocytosis, Autoimmune thrombocytopenia (ITP), Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain–barre syndrome, Glycogen storage disease, and Langerhans cell histiocytosis children were 79.65 ± 5.46, 95.88 ± 3.48, 71.39 ± 3.27, 91.77 ± 6.35, 76.18 ± 6.92, 96.33 ± 4.22, 77.85 ± 8.90, 95.99 ± 3.31, 85.77 ± 4.56, 82.97 ± 4.13 and 77.6 ± 5.15, respectively. Age was significantly associated with physical functioning, school functioning, and psychosocial health scores. The household registration place was significantly related to the total score. The most urgent desire of patients was to reduce the overall medical costs. Conclusions This study showed that patients with PDA had the lowest physical functioning score, while patients with ITP scored the lowest in the emotional functioning, social functioning, school functioning, psychosocial health, and total scores. Incentive policies should be further adopted to improve orphan drug availability and reduce the economic burden of rare diseases.

scholarly journals Measuring parent proxy-reported quality of life of 11 rare diseases in children in Zhejiang, China

2020 ◽  
Author(s):  
Qisheng Gao ◽  
Shanshan Wang ◽  
Jianping Ren ◽  
Xin Wen
Keyword(s):  
Quality Of Life ◽  
Rare Diseases ◽  
Ductus Arteriosus ◽  
Psychosocial Health ◽  
School Functioning ◽  
Autoimmune Thrombocytopenia ◽  
Proxy Report ◽  
Parent Proxy Report ◽  
Parent Proxy

Abstract Background: It has become increasingly important to measure the health-related quality of life (HRQoL) of rare diseases in children and adolescents in recent decades. Much attention has been paid to investigate the HROoL of a specific rare disease by self-report in previous studies. This study aimed to evaluate and compare the HROoL of 11 rare diseases in Chinese children by parent proxy-report, to explore the factors associated with HROoL of patients, and to understand the problems of most concern. Methods: A total of 651 children aged from 2 to 18 were enrolled from the Children’s Hospital Affiliated Zhejiang University in 2018. Their parents completed the parent proxy-report version of the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM 4.0). Independent samples t-test, one-way ANOVA, or Kruskal-Wallis H test was used to compare HROoL scores between groups. Multilevel linear regression models with random intercept were applied to analyze the relationship between socioeconomic variables and both the total score and subdomain scores.Results: The total PedsQL scores of Patent ductus arteriosus(PDA), Infantile agranulocytosis, Autoimmune thrombocytopenia(ITP), Polysyndactyly, Hirschsprung disease, Cleft lip and palate, Tetralogy of fallot, Myasthenia gravis, Guillain-barre syndrome, Glycogen storage disease(GSD), and Langerhans cell histiocytosis children were 79.65±5.46, 95.88±3.48, 71.39±3.27, 91.77±6.35, 76.18±6.92, 96.33±4.22, 77.85±8.90, 95.99±3.31, 85.77±4.56, 82.97±4.13 and 77.6±5.15, respectively. Age was significantly associated with physical functioning, school functioning, and psychosocial health scores. The household registration place was significantly related to the total score. The most urgent desire of patients was to reduce the overall medical costs.Conclusions: This study showed that patients with Patent ductus arteriosus(PDA) had the lowest physical functioning score, while patients with Autoimmune thrombocytopenia(ITP) scored the lowest in the emotional functioning, social functioning, school functioning, psychosocial health, and total scores. Incentive policies should be further adopted to improve orphan drug availability and reduce the economic burden of rare diseases.

The Vietnamese Version of the Health-related Quality of Life Measure for Children with Epilepsy (CHEQOL-25): Reliability

MedPharmRes ◽  
2017 ◽  
Vol 1 (1) ◽  
pp. 9-14
Author(s):  
Tri Doan ◽  
Tuan Tran ◽  
Han Nguyen ◽  
◽  
◽  
...  
Keyword(s):  
Quality Of Life ◽  
Good Practice ◽  
The Self ◽  
Self Report ◽  
Health Related Quality ◽  
Life Measure ◽  
Related Quality ◽  
Health Related ◽  
Parent Proxy

Purpose: This study aimed to translate and culturally adapt the self-report and parent-proxy Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL-25) into Vietnamese and to evaluate their reliability. Methods: Both English versions of the self-report and parent-proxy CHEQOL-25 were translated and culturally adapted into Vietnamese by using the Principles of Good Practice for the Translation and Cultural Adaptation Process. The Vietnamese versions were scored by 77 epileptic patients, who aged 8–15 years, and their parents/caregivers at neurology outpatient clinic of Children Hospital No. 2 – Ho Chi Minh City. Reliability of the questionnaires was determined by using Cronbach’s coefficient α and intra-class correlation coefficient (ICC). Results: Both Vietnamese versions of the self-report and parent-proxy CHEQOL-25 were shown to be consistent with the English ones, easy to understand for Vietnamese children and parents. Thus, no further modification was required. Cronbach’s α coefficient for each subscale of the Vietnamese version of the self-report and parent-proxy CHEQOL-25 was 0.65 to 0.86 and 0.83 to 0.86, respectively. The ICC for each subscale of the self-report and parent-proxy CHEQOL-25 was in the range of 0.61 to 0.86 and 0.77 to 0.98, respectively. Conclusion: The Vietnamese version of the self-report and parent-proxy CHEQOL-25 were the first questionnaires about quality of life of epileptic children in Vietnam. This Vietnamese version was shown to be reliable to assess the quality of life of children with epilepsy aged 8–15 years.

Effects of MyBFF@school Intervention in Health-related Quality of Life among Overweight and Obese Primary School Children

2019 ◽  
Author(s):  
Zahari Ishak ◽  
Suet Fin Low ◽  
Wan Abdul Hakim Wan Ibrahim ◽  
Abqariyah Yahya ◽  
Fuziah Md. Zain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary School ◽  
School Children ◽  
Well Being ◽  
School Functioning ◽  
Primary School Children ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

<p>Obesity has been shown to impact the health-related quality of life (HRQOL) among children. This study aimed to determine the effectiveness of MyBFF@school program on HRQOL among overweight and obese primary school children in Malaysia. KINDL<sup>R</sup> Questionnaire was used to collect data on their HRQOL before and after the program. ANCOVA was used to analyse the comparison between intervention and control group after 6 months. There are significant effect on family functioning, F(2,1103)=7.452, p<0.05 and school functioning, F(1,1117)=7.103, p<0.05 after the intervention. Effects can also be seen on physical well-being, emotional well-being and friends functioning. The program is effective in improving the HRQOL significantly in two dimensions namely the family and school functioning. In order to achieve greater overall success,social support should be an integral part of the program and stigma on obesity should be managed and reduced by including normal-weight children in the program.</p>

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