Long-term health-related quality of life for patients with Hirschsprung’s disease at 5 years after transanal endorectal pull-through operation

Khalil, Marwa M

doi:10.1007/s11136-015-1012-9

Cited by 18 publications

(17 citation statements)

References 25 publications

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“…Though Mills et al found that girls with Hirschsprung's disease had higher scores across all HRQol scales, the difference was not signi cant(P<0.05) [33]. Many previous studies also indicated that gender did not have a signi cant effect on aspects of the global HRQol in children with Hirschsprung's disease [8,37,45]. Children whose household registration place was in Hangzhou got signi cantly higher scores than in other cities, which was highly likely that Hangzhou is the capital city with the highest GDP per capita which represent a higher level of socioeconomic status that means children there have access to better health services and education and develop positive coping mechanisms to management the adversities.…”

Section: Discussionmentioning

confidence: 93%

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

Gao

Wang

Ren³

et al. 2020

Preprint

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Background: It becomes 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 one 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 know 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-reports version of the Pediatric Quality of Life InventoryTM 4.0 (PedsQLTM). 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 sub-domain scores.Results: The total PedsQL scores of Patent ductus arteriosus, Infantile agranulocytosis, Autoimmune thrombocytopenia, 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 score. Gender and The household registration place was significantly associated with the overall score. The most urgent desire of patients was reducing the overall medical costs.Conclusions: These data show that Patent ductus arteriosus scores lowest in physical functioning, Autoimmune thrombocytopenia (ITP) ranks the lowest in the emotional functioning score, social functioning score, school functioning score, psychosocial health score, and total score. Incentive policies should be further taken to improve orphan drug availability and reduce the financial burden of rare diseases.

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Section: Discussionmentioning

confidence: 93%

“…Roodbol et al reported that many children were held back in class or dropped out of school after developing Guillain-Barré syndrome [44]. Khalil found that age at time of surgery was negatively affecting school functioning (ß =-0.907) in children with Hirschsprung's disease [45].…”

Section: Discussionmentioning

confidence: 99%

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

Gao

Wang

Ren³

et al. 2020

Preprint

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“…Minus (-) sign indicates a negative impact. 15,29,34 À Psychosocial HrQoL worsens in adolescence, although physical morbidity improves 26,28,35 Gender þ No effect 13,32,33,39,40 þ Comparable HrQoL in infancy for boys and girls 38 À Reduced HrQoL in females from adolescence 34,37,38…”

Section: No Datamentioning

confidence: 99%

“…In contrast, others could not find a significant effect of sex on HrQoL, neither in younger nor older ages. 13,32,33,39,40 Thus, the impact of sex/gender on HrQoL in ARM/HD remains a matter of debate.…”

Section: Gendermentioning

confidence: 99%

“…Accordingly, numerous studies recommend to increase the patients' self-awareness since a better understanding of the disease and acceptance of limitations can help the patient to overcome difficulties within daily life and to be more cooperative with necessary medical interventions. 13,27,40,42 Second, several studies have addressed the crucial role of coping strategies in ARM/HD families. Coping strategies are cognitive and behavioral modalities employed to manage the negative impact of stressful situations, first described by Lazarus and Folkman.…”

Section: How To Improve Hrqol In Arm/hdmentioning

confidence: 99%

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Health-Related Quality of Life and Psychosocial Morbidity in Anorectal Malformation and Hirschsprung's Disease

Lacher

Quitmann

et al. 2020

Eur J Pediatr Surg

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Anorectal malformation (ARM) and Hirschsprung's disease (HD) are the most common congenital colorectal anomalies. Despite advances in surgical techniques and improvements in postoperative clinical care, short- and long-term physical and psychosocial morbidity of these patients remains high. This review outlines the current literature on the physical and psychosocial aspects of health-related quality of life (HrQoL) and its confounders in patients with ARM/HD. Moreover, important coping strategies are summarized to further improve HrQoL of ARM/HD patients and their families.

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Long-Term Outcome and Quality of Life After Treatment of Hirschsprung’s Disease

Mutanen

Pakarinen

Rintala

2019

Hirschsprung's Disease and Allied Disorders

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Long-term health-related quality of life for patients with Hirschsprung’s disease at 5 years after transanal endorectal pull-through operation

Abstract: Transanal pull-through operation disease showed a good postoperative long-term HRQoL. Overflow incontinence and age at time of surgery had a significant negative effect on all the aspects of children's HRQoL. Parental satisfaction was good and could be improved by more family inclusion.

Cited by 18 publications

References 25 publications

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

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

Health-Related Quality of Life and Psychosocial Morbidity in Anorectal Malformation and Hirschsprung's Disease

Long-Term Outcome and Quality of Life After Treatment of Hirschsprung’s Disease

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