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Familial hypercholesterolaemia and quality of life in family members
Linköpings universitet, Institutionen för medicin och vård, Internmedicin. Linköpings universitet, Hälsouniversitetet.
Linköpings universitet, Institutionen för medicin och vård, Internmedicin. Linköpings universitet, Hälsouniversitetet.
Linköpings universitet, Institutionen för medicin och vård, Omvårdnad. Linköpings universitet, Hälsouniversitetet.
2003 (Engelska)Ingår i: Preventive Medicine, ISSN 0091-7435, E-ISSN 1096-0260, Vol. 36, nr 5, s. 569-574Artikel i tidskrift (Refereegranskat) 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.

Ort, förlag, år, upplaga, sidor
2003. Vol. 36, nr 5, s. 569-574
Nationell ämneskategori
Medicin och hälsovetenskap
Identifikatorer
URN: urn:nbn:se:liu:diva-26872DOI: 10.1016/S0091-7435(02)00065-8Lokalt ID: 11493OAI: oai:DiVA.org:liu-26872DiVA, id: diva2:247422
Tillgänglig från: 2009-10-08 Skapad: 2009-10-08 Senast uppdaterad: 2017-12-13Bibliografiskt granskad
Ingår i avhandling
1. Living with familial hypercholesterolaemia
Öppna denna publikation i ny flik eller fönster >>Living with familial hypercholesterolaemia
2003 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
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.

Ort, förlag, år, upplaga, sidor
Linköping: Linköping Universitet, 2003. s. 57
Serie
Linköping University Medical Dissertations, ISSN 0345-0082 ; 810
Nationell ämneskategori
Medicin och hälsovetenskap
Identifikatorer
urn:nbn:se:liu:diva-24798 (URN)7062 (Lokalt ID)91-7373-503-5 (ISBN)7062 (Arkivnummer)7062 (OAI)
Disputation
2003-10-17, Aulan, Hälsans Hus, Hälsouniversitetet, Linköping, 09:00 (Svenska)
Opponent
Tillgänglig från: 2009-10-07 Skapad: 2009-10-07 Senast uppdaterad: 2012-10-16Bibliografiskt granskad

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Hollman, GunillaOlsson, AndersEk, Anna-Christina

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