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Familial hypercholesterolemia: ethical, practical and psychological problems from the perspective of patients.

Ågård, Anders LU ; Bolmsjö, Ingrid Ågren; Hermerén, Göran LU and Wahlstöm, Jan (2005) In Patient Education and Counseling 57(2). p.162-167
Abstract
The main aim of the study was to explore the extent to which familial hypercholesterolemia (FH) influences the life of the patients affected. The study employed a qualitative analysis of semi-structured interviews with 23 outpatients who were being treated following a diagnosis of heterozygous FH at a tertiary hospital in Göteborg, Sweden. Some interviewees reported concerns related to their medication and feelings of guilt when not complying with treatment recommendations. However, none of the respondents expressed sustained emotional distress or would have preferred to be ignorant of their diagnosis. Apart from being more observant about food intake, their awareness of FH did not appear to have had a substantial impact on their way of... (More)
The main aim of the study was to explore the extent to which familial hypercholesterolemia (FH) influences the life of the patients affected. The study employed a qualitative analysis of semi-structured interviews with 23 outpatients who were being treated following a diagnosis of heterozygous FH at a tertiary hospital in Göteborg, Sweden. Some interviewees reported concerns related to their medication and feelings of guilt when not complying with treatment recommendations. However, none of the respondents expressed sustained emotional distress or would have preferred to be ignorant of their diagnosis. Apart from being more observant about food intake, their awareness of FH did not appear to have had a substantial impact on their way of life. In fact, those who did not suffer from any other diseases generally regarded themselves as healthy. Discussing the genetic constitution with family members with whom they had close contact was natural, but informing distant family members was not. (Less)
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author
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Familial hypercholesterolemia, Management, Ethics, Genetic disorders, Qualitative interview
in
Patient Education and Counseling
volume
57
issue
2
pages
162 - 167
publisher
Elsevier
external identifiers
  • wos:000229808900004
  • scopus:19444387758
ISSN
0738-3991
DOI
10.1016/j.pec.2004.05.010
language
English
LU publication?
yes
id
0c382850-7ce2-4ea4-b991-e2c53e47555e (old id 137858)
date added to LUP
2007-06-26 14:04:37
date last changed
2017-05-28 03:28:34
@article{0c382850-7ce2-4ea4-b991-e2c53e47555e,
  abstract     = {The main aim of the study was to explore the extent to which familial hypercholesterolemia (FH) influences the life of the patients affected. The study employed a qualitative analysis of semi-structured interviews with 23 outpatients who were being treated following a diagnosis of heterozygous FH at a tertiary hospital in Göteborg, Sweden. Some interviewees reported concerns related to their medication and feelings of guilt when not complying with treatment recommendations. However, none of the respondents expressed sustained emotional distress or would have preferred to be ignorant of their diagnosis. Apart from being more observant about food intake, their awareness of FH did not appear to have had a substantial impact on their way of life. In fact, those who did not suffer from any other diseases generally regarded themselves as healthy. Discussing the genetic constitution with family members with whom they had close contact was natural, but informing distant family members was not.},
  author       = {Ågård, Anders and Bolmsjö, Ingrid Ågren and Hermerén, Göran and Wahlstöm, Jan},
  issn         = {0738-3991},
  keyword      = {Familial hypercholesterolemia,Management,Ethics,Genetic disorders,Qualitative interview},
  language     = {eng},
  number       = {2},
  pages        = {162--167},
  publisher    = {Elsevier},
  series       = {Patient Education and Counseling},
  title        = {Familial hypercholesterolemia: ethical, practical and psychological problems from the perspective of patients.},
  url          = {http://dx.doi.org/10.1016/j.pec.2004.05.010},
  volume       = {57},
  year         = {2005},
}