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The meaning of quality of life among patients with familial hypercholesterolemia
Linköping University, Department of Medicine and Care, Internal Medicine. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Medicine and Care, Nursing Science. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Medicine and Care, Internal Medicine. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Medicine and Care, Nursing Science. Linköping University, Faculty of Health Sciences.ORCID iD: 0000-0003-1588-135X
2004 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 19, no 4, 243-250 p.Article in journal (Refereed) Published
Abstract [en]

Background: Living with a genetic predisposition to disease may influence quality of life. The presence of premature disease can lead to an increased focus on family history and genetic predisposition.

Objective: The purpose of this study was to describe quality of life in patients with the genetic disease, familial hypercholesterolemia, who are at an increased risk of premature coronary heart disease.

Methods: Interviews from 12 adult patients with FH were analyzed using constant comparative analysis. The findings of this qualitative study revealed that for patients, quality of life was equated with harmony in life, the core category. Attaining harmony in life presumes satisfaction and togetherness. Cognizance of the threat of coronary heart disease and impending mortality is balanced by the support of togetherness and satisfaction that builds harmony in life.

Conclusion: When caring for patients with familial hypercholesterolemia, it is important to meet each patient on his or her own level, and to support balance and their choices for maintaining or regaining harmony in life.

Place, publisher, year, edition, pages
2004. Vol. 19, no 4, 243-250 p.
Keyword [en]
experience, genetic counselling, grounded theory, hypercholesterolemia - familial, qualitative, quality of life
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-23704PubMedID: 15326980Local ID: 3205OAI: oai:DiVA.org:liu-23704DiVA: diva2:244019
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
In thesis
1. Living with familial hypercholesterolaemia
Open this publication in new window or tab >>Living with familial hypercholesterolaemia
2003 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of this thesis was to describe quality of life 1) in patients with heterozygous familial hypercholesterolaemia (FH), a genetic disorder with an increased risk of coronary heart disease (CHD), 2) in family members of patients with FH. Furthermore, the aim was to analyse the extent to which treatment goals were achieved, as well as adherence and disease knowledge in patients with FH. In order to describe quality of life, anxiety, depression and coping, patients with FH (n=185) and their non-affected family members (n=129) without FH completed the following questionnaires: the Quality of Life Index (QLI), the Hospital Anxiety and Depression Scale (HAD), the Mastery Scale and a questionnaire on health and lipids. A reference group (n=I485) completed the same questionnaires on quality of life, anxiety, depression and coping. In order to describe quality of life from a deeper perspective and identify its meaning, patients with FH (n=12) were interviewed and data were analysed according to the grounded theory method, using constant comparative analysis. The extent to which treatment goals had been achieved was documented (n=74) and patients completed a questionnaire on adherence and knowledge about FH (n=68). The patients were more satisfied with overall quality of life, family life, socio-economic life and psychological/spiritual life than the reference group, (p<0.05). Of the patients, 86 % felt anxiety about contracting CHD. Family members, particularly partners, were more satisfied with family life and psychological/spiritual life than the reference group, (p<0.05). Anxiety about the affected family member contracting CHD was expressed among 91% of the family members. The meaning of quality of life was harmony in life. Cognizance of the threat of CHD, impending mortality, satisfaction and togetherness were balanced to reach harmony in life. The treatment goals for low-density lipoprotein (LDL) (<3.0 mmol/L) and total cholesterol(<5.0 mmol/L) were reached in 23 % and 22 % of the patients, respectively. Adherence to medical treatment was significantly higher in patients who had reached the treatment goal for LDL cholesterol (< 3.0 mmol/L) than those on treatment with a LDL cholesterol ≥ 3.0 mmol/L, (p < 0.05). Out of 11 possible correct answers, there was a mean of 6.8±2.2 correct answers on knowledge about FH. Patients' knowledge was best with regard to what cholesterol is, self-care prevention and reason for drug treatment. Sixty-six percent of the patients did not know about the chance of getting FH and 79 % had no knowledge of the family history of FH. Quality of life in patients with FH and their family members was at least as good as in the reference group. In order to decrease the anxiety among patients and their family members, it is important to meet them at their knowledge level, to support understanding of FH, its risk and treatment, thus facilitating living with harmony in life.

Place, publisher, year, edition, pages
Linköping: Linköping Universitet, 2003. 57 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 810
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-24798 (URN)7062 (Local ID)91-7373-503-5 (ISBN)7062 (Archive number)7062 (OAI)
Public defence
2003-10-17, Aulan, Hälsans Hus, Hälsouniversitetet, Linköping, 09:00 (Swedish)
Opponent
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2012-10-16Bibliographically approved

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Hollman, GunillaEk, Anna-ChristinaOlsson, AndersBerterö, Carina

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