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Financial and relational impact of having a boy with posterior urethral valves.
Harper, Luke; Botto, Nathalie; Peycelon, Matthieu; Michel, Jean-Luc; Leclair, Marc-David; Garnier, Sarah; Clermidi, Pauline; Arnaud, Alexis; Dariel, Anne; Dobremez, Eric; Faure, Alice; Fourcade, Laurent; Boudaoud, Nadia; Chaussy, Yann; Huiart, Laetitia; Bocquet, Valery; Ferdynus, Cyril; Sauvat, Frédérique.
Affiliation
  • Harper L; Department of Pediatric Surgery, CHU de La Réunion, Saint Denis de La Réunion, France.
  • Botto N; Department of Pediatric Surgery and Urology, University Hospital Pellegrin-Enfants, CHU de Bordeaux, Bordeaux, France.
  • Peycelon M; Department of Pediatric Surgery and Urology, APHP, Hôpital Necker, Paris, France.
  • Michel JL; Department of Pediatric Urology, University Hospital Robert Debre, APHP, University of Paris, Centre de Référence des Malformations Rares des Voies Urinaires (MARVU), Paris, France.
  • Leclair MD; Department of Pediatric Surgery, CHU de La Réunion, Saint Denis de La Réunion, France.
  • Garnier S; Department of Pediatric Surgery and Urology, Children's University Hospital, CHU de Nantes, Nantes, France.
  • Clermidi P; Department of Pediatric Surgery and Urology, Lapeyronie University Hospital, CHU de Montpellier, Montpellier, France.
  • Arnaud A; Department of Pediatric Surgery, Armand Trousseau Children's University Hospital, Paris, France.
  • Dariel A; Department of Pediatric Surgery, Rennes University Hospital, CHU de Rennes, Rennes, France.
  • Dobremez E; Department of Pediatric Surgery, North and Timone Children's Hospital, Assistance Publique Hopitaux de Marseille, Aix-Marseille Université, Marseille, France.
  • Faure A; Department of Pediatric Surgery and Urology, University Hospital Pellegrin-Enfants, CHU de Bordeaux, Bordeaux, France.
  • Fourcade L; Department of Pediatric Surgery, North and Timone Children's Hospital, Assistance Publique Hopitaux de Marseille, Aix-Marseille Université, Marseille, France.
  • Boudaoud N; Department of Pediatric Surgery, University Hospital, CHU de Limoges, Limoges, France.
  • Chaussy Y; Department of Pediatric Surgery, Reims University Hospital, Reims, France.
  • Huiart L; Department of Pediatric Surgery, Besançon University Hospital, CHU de Besançon, Besançon, France.
  • Bocquet V; Unité de Soutien Méthodologique, CHU de La Réunion, Saint-Denis de La Réunion, France.
  • Ferdynus C; Clinical Research Department, INSERM, CIC1410, CHU de la Réunion, Saint-Pierre, France.
  • Sauvat F; Unité de Soutien Méthodologique, CHU de La Réunion, Saint-Denis de La Réunion, France.
Front Pediatr ; 11: 1228248, 2023.
Article in En | MEDLINE | ID: mdl-37622083
Introduction: Childhood chronic diseases affect family functioning and well-being. The aim of this study was to measure the impact of caring for a child with PUV, and the factors that most impact the burden of care. Patients and method: We gave a questionnaire on the familial impact of having a child with posterior urethral valves to all parents of a child included in the CIRCUP trial from 2015 onwards. The questionnaire included questions about the parents' demographics, health, professional, financial and marital status and how these evolved since the child's birth as well as the "impact on family scale" (IOFS), which gives a total score ranging from 15 (no impact) to 60 (maximum impact). We then analyzed both the results of the specific demographic questions as well as the factors which influenced the IOFS score. Results: We retrieved answers for 38/51 families (74.5% response rate). The average IOFS score was 23.7 (15-51). We observed that the child's creatinine level had an effect on the IOFS score (p = 0.02), as did the parent's gender (p = 0.008), health status (p = 0.015), being limited in activity since the birth of the child (p = 0.020), being penalized in one's job (p = 0.009), being supported in one's job (p = 0.002), and decreased income (p = 0.004). Out of 38 mother/father binomials, 8/33 (24.2%) declared that they were no longer in the same relationship afterwards. Conclusion: In conclusion, having a boy with PUV significantly impacts families. The risk of parental separation and decrease in revenue is significant. Strategies aiming to decrease these factors should be put in place as soon as possible.
Key words

Full text: 1 Database: MEDLINE Type of study: Health_economic_evaluation Language: En Journal: Front Pediatr Year: 2023 Type: Article Affiliation country: France

Full text: 1 Database: MEDLINE Type of study: Health_economic_evaluation Language: En Journal: Front Pediatr Year: 2023 Type: Article Affiliation country: France