The effects of epistaxis on health‐related quality of life in patients with hereditary hemorrhagic telangiectasia

Merlo, Christian A.; Yin, Linda X.; Hoag, Jeffrey B.; Mitchell, Sally E.; Reh, Douglas D.

doi:10.1002/alr.21374

Cited by 52 publications

(71 citation statements)

References 13 publications

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“…21 Recurrent and severe epistaxis plays a significant role in reducing quality of life and is associated with chronic anemia and increased need for both iron infusions and RBC transfusions. 32 Many different treatments are available for epistaxis and patients should be ideally managed in experienced HHT centers. Conservative measures to prevent epistaxis should be encouraged in all patients and include humidification and topical lubricants.…”

Section: Epistaxismentioning

confidence: 99%

Cerebrovascular Manifestations of Hereditary Hemorrhagic Telangiectasia

Brinjikji

Iyer

Sorenson

et al. 2015

Stroke

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Section: Epistaxismentioning

confidence: 99%

Cerebrovascular Manifestations of Hereditary Hemorrhagic Telangiectasia

Brinjikji

Iyer

Sorenson

et al. 2015

Stroke

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“…This is due to its strong correlation with the SF-36 method. Even so, it is only valid as a measure of post-intervention monitoring of efficacy [20]. In 2011, a specific 13 item scale for estimating quality of life in HHT patients was proposed as complement to SF-36.…”

Section: Discussionmentioning

confidence: 99%

Quality of life in patients with hereditary haemorrhagic telangiectasia (HHT)

Zarrabeitia

Fariñas‐Álvarez

Santibáñez

et al. 2017

Health Qual Life Outcomes

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BackgroundThere are very few studies about general quality of life parameters, standards for the description of health status and comparison with general population data on patients with Hereditary hemorrhagic telangiectasia (HHT), a rare disease in which epistaxis is a cardinal symptom.PurposeTo assess the quality of life in a population of Spanish patients with HHT and compare it with the general population.Design and methodsBetween January 1st 2005 and December 31st 2013, 187 adult patients diagnosed with HHT who were admitted to the HHT Unit of the Hospital Sierrallana, completed on their first visit, the EuroQol 5D-3L (five dimensions and three levels) quality of life descriptive test and the visual analog scale (VAS). The numerical social index value was also determined and the subjective effect of the nasal epistaxis on their quality of life was estimated classified as mild, moderate or severe.ResultsPatients with HHT had greater problems than the general population in the five dimensions of the EuroQol 5D-3L, particularly considering pain/discomfort and anxiety/depression. In the VAS and the social index value, patients with HHT also scored lower than the general population, particularly older patients, males, and patients with HHT2. They also had values similar to those of populations with chronic illnesses. The subjective perception of the severity of epistaxis correlated strongly with the VAS and social index values.ConclusionsThe quality of life of patients with HHT, estimated using the EuroQol 5D-3L scale, is affected across all dimensions. The scores are similar to those seen in cases of other chronic diseases. Older patients, males and the carriers of the ACVRL1 mutation generally have worse scores on these scales. The VAS and the social index value are index that correlate well with the severity of the clinical symptoms associated mainly with epistaxis.

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“…Compared to the general population in various countries, patients with HHT scored significantly lower on all domains of the SF-36 except for bodily pain (Geisthoff et al 2007; Lennox et al 2005;Pasculli et al 2004;Geirdal et al 2012). Within the HHT patient population, patients with severe epistaxis scored significantly lower than patients with mild epistaxis on all physical and mental dimensions of the SF-36 (Merlo et al 2014). Increasing age and increasing number of years living with HHT are two other factors that have been shown to correlate with lower scores on one or more SF-36 scales for physical health and the mental health component summary (Geisthoff et al 2007;Pasculli et al 2004).…”

Section: Introductionmentioning

confidence: 88%

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

et al. 2015

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Hereditary hemorrhagic telangiectasia (HHT; OMIM 187300) is a disorder that affects 1:5000-1:10,000 people worldwide, with an estimated 60,000 affected individuals in the USA. Approximately 50 % of patients with HHT experience potentially life-threatening health complications such as stroke, brain abscess, or heart failure. However, the most common symptom is spontaneous and frequent nosebleeding. HHT is a hereditary condition with significant health consequences, but little is known about how individuals cope with HHT on a daily basis and how individuals share information about the disorder with social groups outside of the family. The objectives of this study were to improve understanding of the daily experiences of patients with diagnosed HHT and to investigate how they disclose their diagnosis to various social groups (friends, dating partners, employers, and coworkers) outside of their biological family. Adult patients seen at a university HHT clinic and who had been diagnosed with HHT for at least 6 months were recruited by mail. Participants completed semi-structured telephone interviews (n=19). A qualitative content analysis of interview transcripts identified four major categories: (1) the emotional impact of HHT, (2) the social impact of HHT, (3) concerns for current and future health related to HHT, and (4) social context drives disclosure of HHT. Participants reported that although HHT was a manageable hereditary disorder, the symptoms negatively affected their daily life. It is important for health care providers to understand how individuals with rare genetic disorders are managing.

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The effects of epistaxis on health‐related quality of life in patients with hereditary hemorrhagic telangiectasia

Abstract: The ESS is a major determinant of HR-QoL and should be considered as a measurement of treatment efficacy in HHT-related epistaxis.

Cited by 52 publications

References 13 publications

Cerebrovascular Manifestations of Hereditary Hemorrhagic Telangiectasia

Cerebrovascular Manifestations of Hereditary Hemorrhagic Telangiectasia

Quality of life in patients with hereditary haemorrhagic telangiectasia (HHT)

Life experiences of individuals with hereditary hemorrhagic telangiectasia and disclosing outside the family: a qualitative analysis

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