Clinical management, psychosocial characteristics, and quality of life in patients with homozygous familial hypercholesterolemia undergoing LDL-apheresis in Turkey: Results of a nationwide survey (A-HIT1 registry)

Kayıkçıoğlu, Meral; Kuman-Tunçel, Ozlem; Pırıldar, Şebnem; Yılmaz, Mehmet; Kaynar, Leylagül; Aktan, Melih; Durmuş, Rana Berru; Gökçe, Cumali; Temizhan, Ahmet; Özcebe, Osman; Akyol, Tülay Karaağaç; Okutan, Harika; Sağ, Saim; Gül, Özen Öz; Salcioglu, Zafer; Yenerçağ, Mustafa; Altunkeser, Bulet Behlul; Kuku, İrfan; Yaşar, Hamiyet Yılmaz; Kurtoğlu, Erdal; Demir, Melis; Demi̇rci̇oğlu, Si̇nan; Pekkolay, Zafer; İlhan, Osman; Tokgözoğlu, Lâle

doi:10.1016/j.jacl.2019.02.001

Cited by 36 publications

(31 citation statements)

References 32 publications

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“…In line with the time-consuming, invasive nature of LA that requires frequent and long-distance travel, Bruckert et al have shown the disturbance of family and social life in patients receiving regular LA [50 • ]. Similarly, A-HIT1 study showed that adult HoFH patients on regular LA, experience significantly impaired quality of life associated with an increased risk of depression [11]. Patient survey revealed that most of the patients were suffering not only from HoFH but also from drawbacks of apheresis.…”

Section: Effect Of Apheresis On Quality Of Life Psychosocial Life and Patients' Perspectivementioning

confidence: 97%

“…LDL-cholesterol levels were on target only in 5.7% of the A-HIT1 population, meanwhile, mean frequency of LA sessions was every 19 (range 7-90) days. Though the high rate of patient awareness about treatment targets, 85% of them were not willing to increase LA frequency [2,11,33]. None of the apheresis centers had a standardized approach for LA and 70% of the attending physicians were unaware of the individual patient's target LDLcholesterol levels.…”

Section: Efficacy Of Apheresis and Goals Of Treatmentmentioning

confidence: 99%

“…Allergic reactions due to the removal of substrates and heparin might be observed. Complications related to vascular access are also highly prevalent and significant reasons for the low adherence to LA [10,11].…”

Section: Adverse Effectsmentioning

confidence: 99%

“…Patient survey revealed that most of the patients were suffering not only from HoFH but also from drawbacks of apheresis. For most of these patients, LA was a difficult-to-bare treatment; the major complaint was related to pain and needles in 34.8%, time spent for apheresis in 27.5%, and both in 17.4% [2,11,33]. In line with patients' perspective, the refusal and low compliance rates are high even in experienced centers [10 • ].…”

Section: Effect Of Apheresis On Quality Of Life Psychosocial Life and Patients' Perspectivementioning

confidence: 99%

“…LA treatment decreases inflammation and blood viscosity while improves endothelial functions [8,9]. However, it's a semiinvasive, time consuming, chronic expensive therapy with variable adherence [2,10,11]. Furthermore, there are still no specific guideline recommendations for the management of patients on LA therapy.…”

Section: Introductionmentioning

confidence: 99%

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LDL Apheresis and Lp (a) Apheresis: A Clinician’s Perspective

Kayıkçıoğlu

2021

Curr Atheroscler Rep

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Purpose of Review Lipoprotein apheresis is the most effective means of lipid-lowering therapy. However, it’s a semi-invasive, time consuming, and chronic therapy with variable adherence. There are still no specific guideline recommendations for the management of patients on lipid apheresis. The purpose of this review is to discuss the clinical indications and major drawbacks of lipid apheresis in the light of recent evidence. Recent Findings Lipoprotein apheresis should be initiated at early ages and performed frequently to receive the expected cardiovascular benefits. However, in clinical practice, most patients experience ineffective apheresis and fail to reach lipid targets. This real-world failure is due to several factors including late diagnosis, delayed referral, and improper frequency of procedures. All these denote that awareness is still low among physicians. Another important factor is the semi-invasive, time consuming nature of the apheresis, leading to high refusal and low adherence rates. Moreover, apheresis decreases quality of life and increases the risk of depression. Mental status is also deteriorated in patients with familial hypercholesterolemia on lipid apheresis. New effective lipid lowering agents are underway with promising cardiovascular results. Summary To overcome the drawbacks, a structured approach, including standardized protocols for lipoprotein apheresis with regular cardiovascular follow-up is warranted. New effective lipid lowering agents with documented cardiovascular benefit, should be integrated into the treatment algorithms of patients on lipoprotein apheresis.

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Section: Effect Of Apheresis On Quality Of Life Psychosocial Life and Patients' Perspectivementioning

confidence: 97%

Section: Efficacy Of Apheresis and Goals Of Treatmentmentioning

confidence: 99%

Section: Adverse Effectsmentioning

confidence: 99%

Section: Effect Of Apheresis On Quality Of Life Psychosocial Life and Patients' Perspectivementioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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LDL Apheresis and Lp (a) Apheresis: A Clinician’s Perspective

Kayıkçıoğlu

2021

Curr Atheroscler Rep

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Sex Differences in Familial Hypercholesterolemia

Klevmoen,

Mulder,

Roeters van Lennep

et al. 2023

Curr Atheroscler Rep

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Purpose of Review This review aims to summarize the existing research on sex differences in familial hypercholesterolemia (FH) across the lifespan. Recent Findings From childhood onward, total- and low-density lipoprotein cholesterol (LDL-C) levels in girls are higher than those in boys with FH. By the age of 30 years, women with FH have a higher LDL-C burden than men. In adulthood, women are diagnosed later than men, receive less lipid-lowering treatment, and consequently have higher LDL-C levels. An excessive atherosclerotic cardiovascular disease risk is reported in young female compared to male FH patients. The periods of pregnancy and breastfeeding contribute to treatment loss and increased cholesterol burden. Summary Earlier initiation of treatment, especially in girls with FH, and lifelong treatment during all life stages are important. Future research should aim to recruit both women and men, report sex-specific data, and investigate the impact of the female life course on cardiovascular outcomes. Future guidelines should include sex-specific aspects. Graphical abstract

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Familial Hypercholesterolemia: Global Burden and Approaches

Tokgözoğlu

Kayıkçıoğlu

2021

Curr Cardiol Rep

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Clinical management, psychosocial characteristics, and quality of life in patients with homozygous familial hypercholesterolemia undergoing LDL-apheresis in Turkey: Results of a nationwide survey (A-HIT1 registry)

Cited by 36 publications

References 32 publications

LDL Apheresis and Lp (a) Apheresis: A Clinician’s Perspective

LDL Apheresis and Lp (a) Apheresis: A Clinician’s Perspective

Sex Differences in Familial Hypercholesterolemia

Familial Hypercholesterolemia: Global Burden and Approaches

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