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Patient-recorded benefit from nasal closure in a Danish cohort of patients with hereditary haemorrhagic telangiectasia

  • Rhinology
  • Published:
European Archives of Oto-Rhino-Laryngology Aims and scope Submit manuscript

Abstract

Background

Nasal closure, also known as the modified Young’s procedure was introduced in Denmark in 2008, as a surgical solution to severe epistaxis in patients with hereditary haemorrhagic telangiectasia (HHT). The objective of this study was to report the overall satisfaction of the procedure from a patient’s point of view as well as the occurrence of complications.

Methods

All the HHT patients who underwent nasal closure from 2008 to 2018 were included in the study. The patients were evaluated for postoperative complications and subjective outcome using Glasgow Benefit Inventory (GBI).

Results

Ten patients were included in the study and were observed for a mean of 64 months. None of the patients was completely free of complications, and reversal was requested in a single case. Haemoglobin levels rose with an average of 2.8 g/dl. The average GBI score after surgery was 38.05. Nine of ten patients would recommend nasal closure to fellow HHT patients.

Conclusion

Nasal closure is highly recommended among patients, but due to the rate of postoperative complications, the procedure should be reserved for a carefully selected group of HHT patients.

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Funding

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Author information

Authors and Affiliations

  1. Department of ORL-Head and Neck Surgery, Odense University Hospital, 5000, Odense C, Denmark

    Jonas Hjelm Andersen & Anette Drøhse Kjeldsen

  2. Department of Clinical Research, University of Southern Denmark, Odense, Denmark

    Anette Drøhse Kjeldsen

  3. HHT-WG VASCERN (European Reference Network for Vascular Disease), Paris, France

    Anette Drøhse Kjeldsen

Authors
  1. Jonas Hjelm Andersen
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  2. Anette Drøhse Kjeldsen
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Corresponding author

Correspondence to Anette Drøhse Kjeldsen.

Ethics declarations

Conflict of interest

None declared.

Ethical approval

The patients were all participants in the Danish HHT database, which is approved by the Danish Data Protection Agency (j.nr. 15/10194) according to the Danish Act on Processing of Personal Data (Act No. 429 of 31 May 2000), and Danish Health and Medicines Authority (j.nr. 3–3013-974/1). The patients had all consented that we were allowed to contact them regarding their HHT disease. Participation in the present project included answering a questionnaire and participating in a telephone interview.

Human and animal rights

All the procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee (include name of committee + reference number) and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

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Appendix 1

Appendix 1

Glasgow Benefit Inventory: nasal closure.

  • Has the result of the nasal closure affected the things you do?

  • Have the results of the nasal closure made your overall life better or worse?

  • Since your nasal closure, have you felt more or less optimistic about the future?

  • Since your nasal closure, do you feel more or less embarrassed when with a group of people?

  • Since your nasal closure, do you feel more or less self-confident?

  • Since your nasal closure, have you found it easier or harder to deal with company?

  • Since your nasal closure, do you feel that you have more or less support from your friends?

  • Have you been to your family doctor, for any reason, more or less often after nasal closure?

  • Since your nasal closure, do you feel more or less confident about job opportunities?

  • Since your nasal closure, do you feel more or less self-conscious?

  • Since your nasal closure, are there more or fewer people who really care about you?

  • Since you had the nasal closure, do you catch colds or infections more or less often?

  • Have you had to take more or less medicine, for any reason, since your nasal closure?

  • Since your nasal closure, do you feel better or worse about yourself?

  • Since your nasal closure, do you feel that you have had more or less support from your family?

  • Since your nasal closure, are you more or less inconvenienced by your HHT?

  • Since your nasal closure, have you been able to participate in more or fewer social activities?

  • Since your nasal closure, have you been more or less inclined to withdraw from social situations?

Much worse

Worse

No change

Better

Much better

1

2

3

4

5

Supplementary questions:

  1. 1.

    Would you recommend nasal closure to a fellow HHT patients with refractory epistaxis? Yes/No

  2. 2.

    Has the procedure affected your general perception of eating in any negative ways? Yes/no

  3. 3.

    Do you have a partner? Yes/No

  4. 4.

    Did you have a partner before the procedure? Yes/No

  5. 5.

    Do you feel that nasal closure has affected intimacy in your relationship in any negative ways? Yes/No

  6. 6.

    Since your nasal closure, have you considered reversal? Yes/No

  7. 7.

    Since your nasal closure, does it annoy you that your voice has changed? Yes/No

  8. 8.

    Have nasal closure changed your ability to participate in sports activities? Yes /Noplease describe how (improvement/ deterioration)

  9. 9.

    Have you had sinusitis/rhinitis after nasal closure has been performed Yes/ No

  10. 10.

    Have your nasal closure caused any sleep problems? Yes/No

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Andersen, J.H., Kjeldsen, A.D. Patient-recorded benefit from nasal closure in a Danish cohort of patients with hereditary haemorrhagic telangiectasia. Eur Arch Otorhinolaryngol 277, 791–800 (2020). https://doi.org/10.1007/s00405-019-05758-1

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  • DOI: https://doi.org/10.1007/s00405-019-05758-1

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