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

Martinent G1, Carrot M2, Chirac A2, Dupuis-Girod S3, Fargeton AE3, Blois Da Conceição S4, Fourdrinoy S5.

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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.