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

Xu, Feng; Lacher, Martin; Quitmann, Julia; Witt, Stefanie; Witvliet, M.; Mayer, Steffi

doi:10.1055/s-0040-1713597

Cited by 15 publications

(11 citation statements)

References 71 publications

(149 reference statements)

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“…ARM patients are at long-term risk for impaired health-related quality of life (HrQoL) in both physical and psychosocial aspects [ 4 , 5 ]. Thus, surgical treatment and care for ARM need to be constantly improved by scientific studies and high-quality publications.…”

Section: Introductionmentioning

confidence: 99%

Global Development of Research on Anorectal Malformations over the Last Five Decades: A Bibliometric Analysis

Martynov

Duess

et al. 2022

Children

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Purpose: Anorectal malformations (ARM) are one most challenging congenital malformations in pediatric surgery. We aimed to assess the research activity on ARM over the last five decades. Methods: Data on original research publications were retrieved from the Web of Science Core Collection (1970–2020), and analyzed for countries, authors, scientific journals, and top-ten papers. Scientific quantity was assessed by the number of publications. Research quality was estimated from the number of citations, average citation rate per item (ACI), and h-index. Results: A total number of 1595 articles with 19,419 citations (ACI = 12.2; h-index = 54) were identified. The annual number of publications and citations significantly increased over time (p < 0.0001). The USA (n = 386; 24.2%), Japan (n = 153; 9.6%), and China (n = 137; 8.6%) were the most productive countries; and the USA (n = 7850; ACI = 20.3; h-index = 44), Japan (n = 1937; ACI = 12.6; h-index = 21), and the Netherlands (n = 1318; ACI = 17.3; h-index = 22) were the top cited countries. Articles were preferentially published in JPS (n = 391; 24.5%), PSI (n = 181; 11.3%), and EJPS (n = 56; 3.5%). Top-ten cited papers focused on classification (n = 1), surgical technique (n = 3), associated syndromes (n = 2), postoperative outcome (n = 3), and basic research (n = 1). Conclusion: This bibliometric study provides valuable insights into the global development of ARM research, and shows that clinical studies and international collaborations dominate in this field.

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Section: Introductionmentioning

confidence: 99%

Global Development of Research on Anorectal Malformations over the Last Five Decades: A Bibliometric Analysis

Martynov

Duess

et al. 2022

Children

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“…With the more frequent use of laparoscopy for treating high forms of ARM, different studies have not found substantial differences in HrQoL [ 14 ].…”

Section: Discussionmentioning

confidence: 99%

“…It has been reported that patients with high ARM or associated malformations do not have a reduced HrQoL, probably due to a different mechanism to adjust a new reality in function to accommodate the limitations of their diagnosis, which allows them to control their organic disease, resulting in a higher HrQoL [ 14 ].…”

Section: Discussionmentioning

confidence: 99%

Quality of Life and Anorectal Malformations: A Single-Center Experience

Scirè

Gabaldo

Dando

et al. 2022

Pediatr Gastroenterol Hepatol Nutr

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Purpose The treatment and long term clinical outcomes of anorectal malformations (ARM) in children have always been the focus of pediatric surgeons. This study aimed at reporting our experience as far as long-term follow-up of ARM in children is concern. Methods We enrolled patients treated between 1999 and 2019, and established selection criteria to choose appropriate subjects. A validated questionnaire was used to determine long-term quality of life outcomes. Results Out of a total of 48 patients treated within the study period, 28 were enrolled in this study. Among the latter, more than 35% had at least one long-time complication, and more than 90% had a good lifestyle. Urinary and fecal continence was achieved in more than 95% of the patients using medical devices. Conclusion This study aimed to bring up new concepts; taking into consideration all aspects of life in patients with ARM, from school life to sexuality, while evaluating fecal and urinary continence. This is essential for the improvement of the skills of the different specialists involved in the management of these patients, and for the implementation of strategies that can improve postoperative function. Most especially, it will also help improve communication between doctors to ensure an adequate transition of these children into adult life.

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“…HD patients suffer from a congenital segmental aganglionosis leading to insufficient peristalsis. The standard surgical procedure for HD is resection of the aganglionotic bowel segment via different types of “pull-through operations” [ 24 ]. Despite successful surgical correction of the malformation, patients with ARM and HD regularly continue to face motility and continence issues that persist into adolescence and adulthood ( Table 1 ).…”

Section: Introductionmentioning

confidence: 99%

“…The majority of patients struggle with constipation (22–87%) and/or stool incontinence and soiling (17–77%) [ 25 ]. While urinary continence and sexual function in HD are most often impaired due to iatrogenic injury, in ARM patients these factors are mostly determined by severity of the disease which may include a hypoplastic pelvic floor or sacral agenesis [ 24 ]. Additionally, ARM patients frequently suffer from concomitant anomalies which are often VACTERL-associated [ 24 ].…”

Section: Introductionmentioning

confidence: 99%

Need for transition medicine in pediatric surgery – health related quality of life in adolescents and young adults with congenital malformations

Uecker

Ure

Quitmann

et al. 2021

Innovative Surgical Sciences

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Survival rates of patients with visceral congenital malformations have increased considerably. However, long-term morbidity in these patients is high. In the last decades, these circumstances have led to a shift in goals of caretakers and researchers with a new focus on patients’ perspectives and long-term morbidity. Health-related quality of life (HrQoL) is the most commonly used patient-reported outcome measure to assess the impact of chronic symptoms on patients’ everyday lives. Most pediatric surgical conditions can cause a significantly decreased HrQoL in affected patients compared to the healthy population. In order to guarantee life-long care and to minimize the impact on HrQoL a regular interdisciplinary follow-up is obligatory. The period of transition from child-centered to adult-oriented medicine represents a critical phase in the long-term care of these complex patients. This scoping review aims to summarize relevant pediatric surgical conditions focusing on long-term-morbidity and HrQoL assessment in order to demonstrate the necessity for a well-structured and standardized transition for pediatric surgical patients.

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

Cited by 15 publications

References 71 publications

Global Development of Research on Anorectal Malformations over the Last Five Decades: A Bibliometric Analysis

Global Development of Research on Anorectal Malformations over the Last Five Decades: A Bibliometric Analysis

Quality of Life and Anorectal Malformations: A Single-Center Experience

Need for transition medicine in pediatric surgery – health related quality of life in adolescents and young adults with congenital malformations

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