Living with Arnold-Chiari malformation: A qualitative descriptive study of quality of life.

StudyAdvances in clinical and experimental medicine : official organ Wroclaw Medical University· Jul 2026

Living with Arnold-Chiari malformation: A qualitative descriptive study of quality of life.

Antonio Martinez-Sabater, Ana Esplugues-Cebrián, Eva Garcia Carpintero-Blas … Pablo Del Pozo-Herce

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Pediatric NeurosurgeryStudyQ2IF 2.6

Adults with Arnold-Chiari malformation report reduced quality of life

Living with Arnold-Chiari malformation: A qualitative descriptive study of quality of life.

Antonio Martinez-Sabater … Pablo Del Pozo-Herce

Advances in clinical and experimental medicine · Jul 2026 · Q2 in General Medicine

Background

Arnold-Chiari malformation (Arnold-Chiari malformation) is a rare congenital disorder affecting the cranio-cervical junction.

Purpose

To explore the experiences of individuals with Arnold-Chiari malformation across various aspects of daily life and their impact on perceived quality of life.

Methods

In 2025, data were collected through in-depth, semi-structured interviews with open-ended questions involving 14 participants (n = 14).

n = 14 participants

6.71/10

Results

6.71/10

life satisfaction moderate, well below a full 10, worse quality of life

n = 14 participants

More results

Fourteen participants with type I Arnold-Chiari malformation (79% women; mean age: 50.5 years) were interviewed.

Five main themes emerged: diagnostic journey, symptoms, impact on quality of life, treatment experiences, and coping strategies/support networks.

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Conclusion · 1 of 3

This study underscores the urgent need for more accessible, compassionate, and specialized healthcare for individuals with Arnold-Chiari malformation.

Conclusion · 2 of 3

Key obstacles include delays in diagnosis, limited clinical knowledge, and insufficient follow-up care. Enhancing the training of healthcare professionals and implementing specific care protocols are essential.

Conclusion · 3 of 3

In addition, greater institutional support and recognition within public policy are crucial for improving the quality of life of individuals living with this condition.

Living with Arnold-Chiari malformation: A qualitative descriptive study of quality of life.

Living with Arnold-Chiari malformation: A qualitative descriptive study of quality of life.

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