The psychological impact of adult-onset craniopharyngioma: A follow-up survey

TL;DR

This study explores the psychological effects of adult-onset craniopharyngioma, revealing significant impacts on mood and social functioning.

Contribution

The study introduces a new patient-informed survey to assess the psychosocial consequences of adult-onset craniopharyngioma.

Findings

88% of participants reported low mood due to adult-onset craniopharyngioma.

68% felt they no longer recognized themselves after diagnosis.

Growth hormone replacement therapy was linked to reduced physical impact.

Abstract

Adult-onset craniopharyngioma (AoC) is a rare benign tumour of the sellar/parasellar region associated with significant physical morbidity and a poorer quality of life. Limited medical studies have documented the psychological impact of AoC, but psychological studies may be better placed to investigate these effects. This study used an exploratory sequential mixed-methods design to develop and administer a new patient-informed survey to quantitatively assess the psychosocial consequences of AoC.

A 30-item questionnaire was developed based on previous qualitative interviews with AoC patients and clinicians. Items covered psychological and physical impacts, including mood, social functioning, and emotion regulation. Participants (N = 25) were recruited online via a UK-based charity and completed the survey through Qualtrics. Percentage endorsements were calculated for each item, and regression analyses examined associations with individual history.

There was a clear psychosocial impact of AoC: 88% reported low mood, 68% felt they no longer recognized themselves, and 56% missed social events due to anxiety. Physical symptoms were also prominent, but importantly these were associated with significant psychosocial implications. Finally, growth hormone replacement therapy was significantly associated with reduced physical impact.

Findings demonstrate a significant psychosocial impact of AoC, highlighting the importance of integrated mental health care in its management and the need for further psychosocial research to improve quality of life for patients.

The online version contains supplementary material available at 10.1007/s12020-025-04497-0.

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