scholarly journals Enablers and barriers to treatment adherence in heterozygous familial hypercholesterolaemia: a qualitative evidence synthesis

BMJ Open ◽  
2019 ◽  
Vol 9 (7) ◽  
pp. e030290 ◽  
Author(s):  
Fiona J Kinnear ◽  
Elaine Wainwright ◽  
Rachel Perry ◽  
Fiona E Lithander ◽  
Graham Bayly ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Treatment Adherence ◽  
Familial Hypercholesterolaemia ◽  
Family Members ◽  
Personal Control ◽  
Qualitative Studies ◽  
Cochrane Library ◽  
Barriers To Treatment ◽  
Thematic Synthesis ◽  
Heterozygous Familial Hypercholesterolaemia

ObjectivesIndividuals with heterozygous familial hypercholesterolaemia (FH) are at high risk of developing cardiovascular disease (CVD). This risk can be substantially reduced with lifelong pharmacological and lifestyle treatment; however, research suggests adherence is poor. We synthesised the qualitative research to identify enablers and barriers to treatment adherence.DesignThis study conducted a thematic synthesis of qualitative studies.Data sourcesMEDLINE, Embase, PsycINFO via OVID, Cochrane library and CINAHL databases and grey literature sources were searched through September 2018.Eligibility criteriaWe included studies conducted in individuals with FH, and their family members, which reported primary qualitative data regarding their experiences of and beliefs about their condition and its treatment.Data extraction and synthesisQuality assessment was undertaken using the Critical Appraisal Skills Programme for qualitative studies. A thematic synthesis was conducted to uncover descriptive and generate analytical themes. These findings were then used to identify enablers and barriers to treatment adherence for application in clinical practice.Results24 papers reporting the findings of 15 population samples (264 individuals with FH and 13 of their family members) across 8 countries were included. Data captured within 20 descriptive themes were considered in relation to treatment adherence and 6 analytical themes were generated: risk assessment; perceived personal control of health; disease identity; family influence; informed decision-making; and incorporating treatment into daily life. These findings were used to identify seven enablers (eg, ‘commencement of treatment from a young age’) and six barriers (eg, ‘incorrect and/or inadequate knowledge of treatment advice’) to treatment adherence. There were insufficient data to explore if the findings differed between adults and children.ConclusionsThe findings reveal several enablers and barriers to treatment adherence in individuals with FH. These could be used in clinical practice to facilitate optimal adherence to lifelong treatment thereby minimising the risk of CVD in this vulnerable population.PROSPERO registration numberCRD42018085946.

scholarly journals Estimating the prevalence of heterozygous familial hypercholesterolaemia: a systematic review and meta-analysis

BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e016461 ◽  
Author(s):  
Leo E Akioyamen ◽  
Jacques Genest ◽  
Shubham D Shan ◽  
Rachel L Reel ◽  
Jordan M Albaum ◽  
...  
Keyword(s):  
Systematic Review ◽  
Familial Hypercholesterolaemia ◽  
Meta Analysis ◽  
Geographical Location ◽  
Significant Risk ◽  
Sensitivity Analyses ◽  
Cochrane Library ◽  
Cvd Risk ◽  
Premature Cardiovascular Disease ◽  
Heterozygous Familial Hypercholesterolaemia

ObjectivesHeterozygous familial hypercholesterolaemia (FH) confers a significant risk for premature cardiovascular disease (CVD). However, the estimated prevalence of FH varies substantially among studies. We aimed to provide a summary estimate of FH prevalence in the general population and assess variations in frequency across different sociodemographic characteristics.Setting, participants and outcome measuresWe searched MEDLINE, EMBASE, Global Health, the Cochrane Library, PsycINFO and PubMed for peer-reviewed literature using validated strategies. Results were limited to studies published in English between January 1990 and January 2017. Studies were eligible if they determined FH prevalence using clinical criteria or DNA-based analyses. We determined a pooled point prevalence of FH in adults and children and assessed the variation of the pooled frequency by age, sex, geographical location, diagnostic method, study quality and year of publication. Estimates were pooled using random-effects meta-analysis. Differences by study-level characteristics were investigated through subgroups, meta-regression and sensitivity analyses.ResultsThe pooled prevalence of FH from 19 studies including 2 458 456 unique individuals was 0.40% (95% CI 0.29% to 0.52%) which corresponds to a frequency of 1 in 250 individuals. FH prevalence was found to vary by age and geographical location but not by any other covariates. Results were consistent in sensitivity analyses.ConclusionsOur systematic review suggests that FH is a common disorder, affecting 1 in 250 individuals. These findings underscore the need for early detection and management to decrease CVD risk.

scholarly journals Effects of dignity therapy on palliative patients’ family members: A systematic review

2021 ◽  
pp. 1-10
Author(s):  
Leonor Grijó ◽  
Carolina Tojal ◽  
Francisca Rego
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Meaning In Life ◽  
Family Members ◽  
Cochrane Library ◽  
Publication Date ◽  
Dignity Therapy ◽  
Bibliographic Search ◽  
Palliative Patients

Abstract Objective Dignity therapy (DT) is a kind of psychotherapy that identifies the main concerns of end-of-life patients that affect their perception of dignity and helps them to find a new meaning in life. Most prior studies on DT analyze outcomes for palliative care patients. The aim of this systematic review is to explore the outcomes of DT in palliative care patients’ family members. Method In June 2020, a bibliographic search was performed using the terms “Dignity Therapy” and “Palliative Care” in the following databases: Cochrane library, TRIP database, PUBMED, Scopus, and Web of Knowledge. Of the 294 articles found, 8 met the selection criteria and were considered in the present study. No articles were excluded based on their publication date. Results Family members generally believe that DT helps them to better prepare the patient's end-of-life and overcome the bereavement phase. The legacy document was considered a source of comfort, and most would recommend DT to other people in their situation. DT is generally considered as important as any other aspect of the patient's treatment. Significance of results There is evidence of the benefits of DT for palliative patients’ family members. However, there are still few studies that evaluate these outcomes. The existing evidence is poorly generalized, and thus, further studies are needed to deeply explore the benefits of this therapy both for patients and their families.

scholarly journals SAT0643-HPR NURSE-LED CARE FROM THE PERSPECTIVE OF PEOPLE WITH EARLY RHEUMATOID ARTHRITIS: A QUALITATIVE SYSTEMATIC REVIEW

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1280.2-1281
Author(s):  
A. M. T. Sweeney ◽  
C. Mccabe ◽  
C. Flurey ◽  
J. Robson ◽  
A. Berry ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Systematic Review ◽  
Systematic Reviews ◽  
Qualitative Studies ◽  
Easy Access ◽  
Nurse Specialist ◽  
Care Needs ◽  
Thematic Synthesis ◽  
Early Ra ◽  
Qualitative Systematic Review

Background:Nurse-led care has been shown to be clinically effective and cost effective in rheumatoid arthritis (RA) but the role of the nurse in early RA is not well defined. Evidence for processes of care in RA is limited and it is not known how well rheumatology nurse-led clinics meet care needs of people with early RA.Objectives:The aim of this study was to develop an understanding of rheumatology nurse-led care from the perspective of people with early RA.Methods:A qualitative systematic review was conducted. The review protocol is published in the International prospective register of systematic reviews.In March 2019, the following databases were searched: MEDLINE, EMBASE, CINAHL, PsycINFO and OpenGrey. Due to lack of studies in early RA this review included adults with early and established inflammatory arthritis, qualitative studies with data on patients’ perspectives of nurse-led care, published in peer-reviewed journals in English between 2010 and 2019. Two reviewers screened titles, abstracts and full texts. Data were extracted and managed in tables. Joanna Briggs Institute Critical Appraisal Checklist was used for quality assessment of the included studies. A thematic synthesis was undertaken using the framework of Thomas and Harden.1Results:The search identified 1034 records. After screening and assessing for eligibility, 8 qualitative studies were included in the review (133 patients), 2 studies included people with early RA. Three main themes were identified (Figure 1).Figure 1.Themes of nurse-led care from the perspective of people with RAProviding knowledge and skill. This theme delineated rheumatology nursing as providing professional expertise in the planning and delivery of care. The rheumatology nurse-led service included easy access via telephone helpline, consultations with the clinical nurse specialist for assessment of disease activity and care needs, planning of care, disease information and education, supporting self-management, and referral to rheumatologist and the multi-disciplinary team. People with RA highly valued the nurse expertise and specialist knowledge provided at nurse-led clinics.‘She was very good at informing me, so I have only praise for this ... because I have never had it like this before’. (Person with early RA).Using a person-centred approach.This theme showed nurse-led care using a person-centred approach combined with empathy and good communication skills, which created a good therapeutic environment. People with RA appreciated the person-centeredness, empathy and involvement of the nurse. ‘She is very sensitive. She can see if I am feeling bad and comes straight to me and asks: “How are you today?” ...You are treated and taken seriously’. (Person with early RA).Meeting patients‘ care needs. This theme presented nurse-led care as creating a sense of being empowered and psychologically supported in the management of RA and its impact. Nurse-led care made people with RA feel cared for, secure and confident. It added value to rheumatology care and made care complete.‘The thought of sticking a needle into my own stomach... it felt a bit like I would never manage to do that. However, they have been absolutely wonderful here ... and now I can do it myself’. (Person with early RA).Conclusion:Nurse-led care for people with RA is characterised by provision of rheumatology expertise using a person-centred approach, and patients‘ holistic care needs are being met. This study found a dearth of literature on perceptions of nurse-led care in people with early RA, which highlights the need for further research in this population.References:[1]Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews.BMC Med Res Methodol2008; 8: 45.Disclosure of Interests:Anne-Marie Tetsche Sweeney: None declared, Candy McCabe: None declared, Caroline Flurey: None declared, Joanna Robson: None declared, Alice Berry: None declared, Pamela Richards: None declared, Mwidimi Ndosi Grant/research support from: Bristol Myers Squibb, Consultant of: Janssen, Pfizer

Thematic Synthesis of Qualitative Studies on Patient and Caregiver Perspectives on End-of-Life Care in CKD

2014 ◽  
Vol 63 (6) ◽  
pp. 913-927 ◽  
Author(s):  
Allison Tong ◽  
Katharine L. Cheung ◽  
Sumi Sukumaran Nair ◽  
Manjula Kurella Tamura ◽  
Jonathan C. Craig ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Studies ◽  
Life Care ◽  
Thematic Synthesis

scholarly journals Methods of synthesizing qualitative research studies for health technology assessment

2011 ◽  
Vol 27 (4) ◽  
pp. 384-390 ◽  
Author(s):  
Nicola Ring ◽  
Ruth Jepson ◽  
Karen Ritchie
Keyword(s):  
Qualitative Research ◽  
Health Technology Assessment ◽  
Technology Assessment ◽  
Health Research ◽  
Service Providers ◽  
Health Technology ◽  
Qualitative Studies ◽  
Patient Centeredness ◽  
Summary Table ◽  
Thematic Synthesis

Objectives: Synthesizing qualitative research is an important means of ensuring the needs, preferences, and experiences of patients are taken into account by service providers and policy makers, but the range of methods available can appear confusing. This study presents the methods for synthesizing qualitative research most used in health research to-date and, specifically those with a potential role in health technology assessment.Methods: To identify reviews conducted using the eight main methods for synthesizing qualitative studies, nine electronic databases were searched using key terms including meta-ethnography and synthesis. A summary table groups the identified reviews by their use of the eight methods, highlighting the methods used most generally and specifically in relation to health technology assessment topics.Results: Although there is debate about how best to identify and quality appraise qualitative research for synthesis, 107 reviews were identified using one of the eight main methods. Four methods (meta-ethnography, meta-study, meta-summary, and thematic synthesis) have been most widely used and have a role within health technology assessment. Meta-ethnography is the leading method for synthesizing qualitative health research. Thematic synthesis is also useful for integrating qualitative and quantitative findings. Four other methods (critical interpretive synthesis, grounded theory synthesis, meta-interpretation, and cross-case analysis) have been under-used in health research and their potential in health technology assessments is currently under-developed.Conclusions: Synthesizing individual qualitative studies has becoming increasingly common in recent years. Although this is still an emerging research discipline such an approach is one means of promoting the patient-centeredness of health technology assessments.

Treatment of familial hypercholesterolaemia in children and adolescents in the last three decades

2013 ◽  
Vol 24 (3) ◽  
pp. 437-441 ◽  
Author(s):  
Avishay Elis ◽  
Rong Zhou ◽  
Evan A. Stein
Keyword(s):  
Children And Adolescents ◽  
Familial Hypercholesterolaemia ◽  
Low Density Lipoprotein ◽  
Density Lipoprotein ◽  
Lipoprotein Cholesterol ◽  
Low Density ◽  
Low Density Lipoprotein Cholesterol ◽  
Cholesterol Levels ◽  
Heterozygous Familial Hypercholesterolaemia

AbstractBackground:This study evaluated the effectiveness of long-term intensive lipid-lowering therapy in children and adolescents with familial hypercholesterolaemia.Methods:The charts of 89 children and adolescents with heterozygous familial hypercholesterolaemia among ∼1000 patients treated from 1974 to 2008 were reviewed. Familial hypercholesterolaemia was defined as low-density lipoprotein cholesterol level >90th percentile in individuals with a history of familial hypercholesterolaemia.Results:Of the 89 patients, 51% were male; the mean age at diagnosis was 8 ± 4 years, and the mean follow-up was 13 ± 8 years. Baseline and most recent low-density lipoprotein cholesterol levels (mg/dl) under treatment were 250 ± 50 and 142 ± 49, respectively, reduced 43% from baseline (p < 0.0001). At the most recent visit, 39 patients received statin monotherapy, mainly atorvastatin or rosuvastatin, and 50 (56%) patients received combination therapy, mainly vytorin or rosuvastain/ezetimibe, 15 patients were >30 years of age, and none developed symptomatic cardiovascular disease or needed revascularisation.Conclusions:Long-term statin-based therapy can reduce low-density lipoprotein cholesterol levels in most children and adolescents with heterozygous familial hypercholesterolaemia and decrease cardiovascular risk significantly.

Enhanced postprandial RLP-Cholesterol decreased after simvastatin in heterozygous familial hypercholesterolaemia (FH) patients

2000 ◽  
Vol 151 (1) ◽  
pp. 301
Author(s):  
Th.B. Twickler ◽  
G.M. Dallinga-Thie ◽  
P.C.N.J. Schreuder ◽  
H.W. de Valk ◽  
M. Castro Cabezas ◽  
...  
Keyword(s):  
Familial Hypercholesterolaemia ◽  
Heterozygous Familial Hypercholesterolaemia

scholarly journals Stigma and cystic fibrosis

2010 ◽  
Vol 18 (1) ◽  
pp. 139-142 ◽  
Author(s):  
Tainá Maues Peluci Pizzignacco ◽  
Débora Falleiros de Mello ◽  
Regina Aparecida Garcia de Lima
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Chronic Disease ◽  
Children And Adolescents ◽  
Treatment Adherence ◽  
Family Relationships ◽  
Life Histories ◽  
Autosomal Recessive ◽  
Family Members

Cystic Fibrosis (CF), also known as Mucoviscidosis, is a chronic disease of autosomal recessive origin and so far incurable. This analysis considers some characteristics of patients and family members that indicate it is a stigmatizing disease. The CF stigma’s impact on the lives of children and adolescents can affect treatment adherence, socialization, family relationships and the formation of their life histories, with direct consequences on their quality of life.

scholarly journals Extracorporeal LDL-Cholesterol Elimination in the Treatment of Severe Familial Hypercholesterolemia

2003 ◽  
Vol 46 (1) ◽  
pp. 3-7 ◽  
Author(s):  
Milan Bláha
Keyword(s):  
Ldl Cholesterol ◽  
Familial Hypercholesterolaemia ◽  
Ldl Apheresis ◽  
Ecg Changes ◽  
Bicycle Ergometry ◽  
Life Saving ◽  
Significant Regression ◽  
Heterozygous Familial Hypercholesterolaemia ◽  
Atherosclerotic Changes ◽  
Direct Adsorption

The extracorporeal elimination of LDL-cholesterol could be performed using the classic non-selective centrifuge or membrane plasmapheresis. The modern methods are more selective and effective. The atherogenic particules are removed from plasma by active colon or capsula. The methods include: cascade filtration, imunoadsorbtion, heparin-induced precipitation of LDL, thermofiltration, dextran-induced precipitation of LDL and direct adsorption of lipids (DALI). The regular LDL-apheresis is the life-saving technique in the treatment of homozygous familial hypercholesterolaemia. It is used in heterozygous familial hypercholesterolaemia when the patients do not respond to diet and drugs therapy, too. The regular LDL-apheresis treatment may be followed by the decreased frequency of angina pain episodes, the reduction of ECG changes during the bicycle ergometry and significant disappearance of tendinous xantomas. Some prospective randomised studies has shown even in this group of patients, resistant to conventional treatment, a significant regression of atherosclerotic changes.

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