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Sexual well-being in adolescent and young adults born with arm: the perspective of the patients

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Abstract

Purpose

Sexual well-being and sexual functioning are understudied in patients born with ARM. The aim of this exploratory study was to investigate sexual history, main fears, and problems encountered during sexual relationships.

Methods

Before participating in a sexual education intervention, 21 adolescents or young adults (12 males; mean 28.8; SD 10.6) born with ARM, answered a ten-item questionnaire specifically developed to evaluate sexual well-being. Percentages and Chi-square were calculated.

Results

52.4% were married/had a partner. The majority (71%) declared that had sexual relationships. Mean age of the first sexual relationship was 18.8 (2.7) and 22.7 (3.8) for males and females, respectively. Females reported both more fear and experience of pain during sexual intercourse, compared to males. Main experienced problems and fears for male patients were loss of feces and premature ejaculation, followed by the fear of lack of erection and managing contraception. Main experienced problems and fears in females were loss of feces, pain, lack of desire, and lack of lubrication. In only few cases, patients asked for advices to a pediatric surgeon or to an adult surgeon specialized in ARM.

Conclusions

Adult and adolescent patients may benefit of andrological/gynecological evaluation, psychological support, and sexual counseling to improve their sexual well-being.

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Acknowledgements

The authors would like to thank all the patients of the AIMAR association who contributed to the present research answering the questionnaire.

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Authors

Contributions

SE and CG conceived the idea and shape the manuscript. SE and CG wrote the introduction, the methods and the discussion. SE collected the data. All the other authors commented on the questionnaire and on the final version of the manuscript.

Corresponding author

Correspondence to Caterina Grano.

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The authors declare that they have no conflict of interest.

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Informed consent was asked to all participants included in the study.

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“All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards”.

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Eleuteri, S., Aminoff, D., Lucidi, F. et al. Sexual well-being in adolescent and young adults born with arm: the perspective of the patients. Pediatr Surg Int 35, 945–951 (2019). https://doi.org/10.1007/s00383-019-04507-z

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