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Living with familial hypercholesterolaemia
Linköping University, Department of Medicine and Care, Internal Medicine. Linköping University, Faculty of Health Sciences.
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: urn:nbn:se:liu:diva-24798Local ID: 7062ISBN: 91-7373-503-5 (print)OAI: oai:DiVA.org:liu-24798DiVA: diva2:245121
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
List of papers
1. Quality of life in patients with familial hypercholesterolaemia
Open this publication in new window or tab >>Quality of life in patients with familial hypercholesterolaemia
Show others...
2002 (English)In: Journal of Internal Medicine, ISSN 0954-6820, E-ISSN 1365-2796, Vol. 251, no 4, 331-337 p.Article in journal (Refereed) Published
Abstract [en]

Objectives.  The primary aim of this study was to analyse quality of life in adult patients with familial hypercholesterolaemia (FH), a genetic disorder with increased risk of coronary heart disease (CHD). Secondary aims were to find explanatory factors for quality of life and anxiety.

Design. A descriptive cross-sectional design was used.

Setting.  Outpatients from lipid clinics at two university hospitals in Sweden were included. Patients with heterozygous FH and a randomly selected control group participated by filling out questionnaires.

Subjects.  Two hundred and eighty patients with heterozygous FH above 18 years of age were asked, and 212 of whom 185 were free of overt CHD, participated. Of a control group of 2980 persons 1485 were included for comparison.

Methods. We used Likert-type questionnaires: the Quality of Life Index (QLI) consisting of four subscales, the Hospital Anxiety and Depression Scale (HAD), the Mastery Scale measuring coping and a questionnaire on health and lipids constructed for FH patients.

Results.  Patients with FH were significantly more satisfied with overall quality of life 21.8 ± 0.3 (SEM) vs. controls 21.1 ± 0.1 and this was also the case in three of four subscales, all differences P < 0.05. Anxiety about getting CHD was expressed amongst 86% of the patients with FH.

Conclusions. Quality of life amongst patients with FH was at least as good as in controls but they were worried about getting CHD.

Keyword
adaptation, anxiety, familial hypercholesterolemia, personal health, quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26415 (URN)10.1046/j.1365-2796.2002.00963.x (DOI)11952884 (PubMedID)10956 (Local ID)10956 (Archive number)10956 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
2. Familial hypercholesterolaemia and quality of life in family members
Open this publication in new window or tab >>Familial hypercholesterolaemia and quality of life in family members
2003 (English)In: Preventive Medicine, ISSN 0091-7435, E-ISSN 1096-0260, Vol. 36, no 5, 569-574 p.Article in journal (Refereed) Published
Abstract [en]

Background

Awareness of genetic disease in the family may influence quality of life. The purpose of this study was to describe quality of life among nonaffected members of families with familial hypercholesterolaemia. All were aware of the risk for coronary heart disease. Their quality of life was compared with a reference group and with the patients with familial hypercholesterolesterolaemia themselves.

Methods

Names of family members (n = 129) were given by the patients with familial hypercholesterolaemia. A randomly selected reference group (n = 1485) and patients with familial hypercholesterolaemia (n = 185) were included for comparison. They all completed the questionnaire Quality of Life Index, the Hospital Anxiety and Depression Scale, and the Mastery Scale measuring coping. Family members and patients with familial hypercholesterolaemia also completed a questionnaire on health and lipids.

Results

Family members were more satisfied with family life, mean 22.1 ± 3.5 (SD), and psychological/spiritual life, 22.9 ± 4.0, than the reference group, 21.4 ± 4.3 and 21.1 ± 4.8, respectively; this was particularly expressed among partners, P < 0.05. Of family members, 91% were anxious about the patient with familial hypercholesterolaemia developing coronary heart disease.

Conclusions

Family members have as good a quality of life as members of the reference group, but they were anxious about the patient with familial hypercholesterolaemia developing coronary heart disease.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26872 (URN)10.1016/S0091-7435(02)00065-8 (DOI)11493 (Local ID)11493 (Archive number)11493 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
3. The meaning of quality of life among patients with familial hypercholesterolemia
Open this publication in new window or tab >>The meaning of quality of life among patients with familial hypercholesterolemia
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.

Keyword
experience, genetic counselling, grounded theory, hypercholesterolemia - familial, qualitative, quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-23704 (URN)15326980 (PubMedID)3205 (Local ID)3205 (Archive number)3205 (OAI)
Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
4. Achievement of treatment goals, adherence and disease knowledge in patients with familial hypercholesterolaemia
Open this publication in new window or tab >>Achievement of treatment goals, adherence and disease knowledge in patients with familial hypercholesterolaemia
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: Effective treatment is available for patients with familial hypercholesterolaemia (FH). Nevertheless the treatment goal seems hard to reach in all patients. We investigated to what extent recommended international treatment goals were achieved for total cholesterol and low-density lipoprotein (LDL) cholesterol, adherence to drug treatment and if achievement of treatment goals was influenced by knowledge.

Design: Cross-sectional design.

Methods: Patients with FH, above 18 years of age, n=74, were asked to participate. Drug treatment, laboratory results, blood pressure and smoking were documented, a questionnaire on adherence and knowledge about FH was sent to the patients. Response rate for the questionnaire was 92 % (n=68).

Results: The treatment goals for LDL cholesterol (< 3.0 mmol/L) and total cholesterol (<5.0 mmol/L) were reached in 23% and 22% of the patients, respectively. Patients with LDL cholesterol < 3.0 mmol/L who were on treatment followed the prescription to a significantly higher degree than patients with LDL cholesterol ≥ 3.0 mmol/L, (p=0.001). For patient knowledge, the mean was 6.8±2.2 out of 11 possible. The patients had knowledge about cholesterol, self-care prevention and the reason for drug treatment. Patients were less informed about the chance of getting FH and family history.

Conclusion: Intensified drug treatment is motivated since 23 % of the patients with FH reached treatment goals. In spite of the absence of relation between LDL cholesterol level and knowledge in the present study, we believe that increased disease lmowledge would facilitate for patients to face the difficulties of the condition.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-84641 (URN)
Available from: 2012-10-16 Created: 2012-10-16 Last updated: 2012-10-16Bibliographically approved

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