Experiences of youth growing up with anorectal malformation or Hirschsprung’s disease: a multicenter qualitative in-depth interview study

Topic overview

Key takeaways

• ARM and HD patients face multifaceted challenges across physical, emotional, social, and educational domains that persist into adulthood.
• Gender-specific concerns emerge in adolescence, with female patients uniquely expressing anxiety about future fertility outcomes.
• Family remains the primary support system, but transition care programs must address evolving peer and partner relationship dynamics.
• Individualized transition care protocols should incorporate mental health screening and address career planning concerns.
• Qualitative patient interviews reveal unmet needs in current care models, emphasizing the importance of patient-centered transition planning.

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