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Quality of life and coping in Dutch homozygous familial hypercholesterolemia patients: A qualitative study
Janneke W C M Mulder1, Leonieke W Kranenburg2, Willemijn J Treling2
1Department of Internal Medicine, Erasmus University Medical Center, Rotterdam, the Netherlands.
Insights
Dutch patients with homozygous familial hypercholesterolemia (HoFH) effectively cope with their condition, experiencing only a slight impact on their quality of life. Understanding these coping strategies can help healthcare professionals tailor HoFH patient care.
Area of Science:
- Cardiology
- Genetics
- Psychology
Background:
- Homozygous familial hypercholesterolemia (HoFH) causes severely elevated LDL-C, leading to premature cardiovascular disease.
- Little is known about how HoFH patients manage their condition in daily life.
- This study investigates the experiences and coping mechanisms of Dutch HoFH patients.
Purpose of the Study:
- To explore the lived experiences of Dutch patients with HoFH.
- To identify the coping strategies employed by HoFH patients.
- To assess the impact of HoFH on patients' quality of life and well-being.
Main Methods:
- In-depth interviews were conducted with 20 adult Dutch HoFH patients.
- Grounded theory was used to analyze interview transcripts.
- Health-related quality of life (QoL) and coping styles were measured using the EQ-5D-5L and TMSI.
Main Results:
- Disease perception emerged as a central theme in patients' experiences.
- Most patients utilized both monitoring (information-seeking) and blunting (distraction) coping styles.
- HoFH patients reported transient anxiety but maintained a high quality of life, with scores only slightly below the general population.
Conclusions:
- Dutch HoFH patients employ effective coping mechanisms, minimizing the impact on their subjective quality of life.
- Dedicated HoFH centers and treatment provide confidence and support to patients.
- Knowledge of patient coping strategies can inform tailored healthcare interventions for HoFH.
Background And Aims:
Homozygous familial hypercholesterolemia (HoFH) is characterized by severely elevated low-density lipoprotein cholesterol (LDL-C) levels leading to extremely premature atherosclerotic cardiovascular disease. Therefore, healthcare professionals consider HoFH to have major impact on patients' life. Remarkably, little is known on how patients deal with their condition. The aim of this study is to investigate how Dutch patients experience and cope with HoFH in daily life.
Methods:
Adult patients with genetically confirmed HoFH, treated at the 3 specialized HoFH-centers in the Netherlands, were interviewed in-depth. Interview transcripts were analyzed according to grounded theory. Health-related quality of life (QoL) and coping were measured with the EuroQol (EQ)-5D-5L questionnaire and the Threatening Medical Situations Inventory (TMSI), respectively.
Results:
20 Dutch HoFH patients were interviewed: 50% women, median age 38 years, 60% with cardiovascular disease, 10% on apheresis. Coding of the transcripts resulted in a conceptual model, with disease perception as the central theme. Individual TMSI-results corresponded to the interviews, with most patients showing both monitoring (information-seeking behavior) and blunting (distractive strategies) coping styles. The median EQ-5D-5L health utility score (0.839) was only 5% below the Dutch population (0.887). Transient anxiety was reported when confronted with the consequences of HoFH in daily life. Patients reported high confidence in treatment by a dedicated HoFH center, which helped them cope with their disease.
Conclusions:
Dutch HoFH patients use a variety of effective coping mechanisms in such a way that their subjective QoL is only slightly affected. Healthcare professionals can use this knowledge to tailor their care to the specific needs of these patients.
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