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Quality of Life Research
Gepubliceerd in: Quality of Life Research 5/2020

06-01-2020

Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation

Auteurs: Guillaume Martinent, Manon Carrot, Anne Chirac, Sophie Dupuis-Girod, Anne-Emmanuelle Fargeton, Stéphanie Blois Da Conceição, Sylvie Fourdrinoy

Gepubliceerd in: Quality of Life Research | Uitgave 5/2020

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Abstract

Objective

The purpose of the study was to arrive at an accurate description of health-related quality of life of hereditary hemorrhagic telangiectasia patients.

Methods

Thirteen semi-structured interviews were conducted in patients with hereditary hemorrhagic telangiectasia.

Results

Qualitative grounded theory analyses were performed using the participants’ transcripts and revealed the following six categories: Impact of physical symptoms on daily life, Quality of family and social life, Emotional and psychological outcomes related to the disease, Knowledge having a severe disease and coping strategies to manage such disease, Recognition of the disease by professional colleagues and superiors, and Knowledge and understanding from health professionals in medical care.

Conclusion

The definition of quality of life that emerged from the participants’ transcripts was essentially related to health. Individuals with hereditary hemorrhagic telangiectasia mainly focused on the physical, psychological and emotional impacts of the symptoms and their consequences on professional life and social activities. Family relationships were also highlighted in the participants’ transcripts. As such, HHT patients used coping strategies to manage their disease. Finally, a particularly salient issue referred to the lack of knowledge concerning the rare nature of this disease and the ensuing inherent sense of misunderstanding.
vorige artikel Exploration of symptom experience in kidney transplant recipients based on symptoms experience model
volgende artikel Back pain occurrence and treatment-seeking behavior among nurses: the role of work-related emotional burden
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Metagegevens
Titel
Hereditary hemorrhagic telangiectasia and health-related quality of life: a qualitative investigation
Auteurs
Guillaume Martinent
Manon Carrot
Anne Chirac
Sophie Dupuis-Girod
Anne-Emmanuelle Fargeton
Stéphanie Blois Da Conceição
Sylvie Fourdrinoy
Publicatiedatum
06-01-2020
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2020
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-020-02415-7

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