Can Multiple Lifestyle Behaviours Be Improved in People with Familial Hypercholesterolemia? Results of a Parallel Randomised Controlled Trial

Broekhuizen, Karen; Poppel, Mireille N. M. van; Koppes, L.L.J.; Kindt, Iris; Brug, Johannes; Mechelen, Willem van

doi:10.1371/journal.pone.0050032

Cited by 31 publications

(61 citation statements)

References 54 publications

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“…The Medication Adherence Report Scale (MARS-5) was selected for medication adherence. The MARS-5 questionnaire has been employed before in FH research and validity as well as reliability of MARS-5 has been found acceptable [14,15]. MARS-5 contains questions about e.g.…”

Section: Medication Adherencementioning

confidence: 99%

The development and first results of a health-related outcomes set in familial hypercholesterolemia (FH) patients: Knowledge is health

et al. 2020

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A health-related outcomes set has been developed for familial hypercholesterolemia (FH) patients. • This set contained both outcomes defined by health care professionals as patient-related outcomes (PROMS). • The response rate of the PROMS was 81.4%, implicating high acceptance.• Sufficient knowledge of a patient was associated with better health-outcomes. A R T I C L E I N F O Keywords:Familial hypercholesterolemia Value-based health care Patient-reported outcome measures Prevention Cardiovascular disease A B S T R A C TBackground and aims: Familial hypercholesterolemia (FH) is the most common hereditary lipid disorder requiring life-long treatment to prevent cardiovascular disease. A recent concept in healthcare is not only to focus on outcomes defined by healthcare professionals, but also take Patient-Reported Outcomes Measures (PROMs) into account. The aim of this study is (1) to describe the development and first results of a health-related outcomes set including PROMs for FH patients and (2) investigate the influence of patient knowledge on healthrelated outcomes. Methods: A multidisciplinary group of FH experts, in collaboration with a sounding board of FH patients (n = 166), developed a health-related outcomes set containing the domains: medication adherence (MARS-5), smoking, self-efficacy and self-management, quality of life (QOL) (EQ-5D-5L), reported adverse drug reactions, lipid outcome measures, and FH and cardiovascular risk factor knowledge. Knowledge scores ranged from 0 to 10. Two groups were created: Insufficient knowledge (INSUF) (< 7.5), and Sufficient knowledge (SUF) (≥7.5). Results: The response rate of the questionnaires was 81.4% (n = 429), implicating acceptance of PROMs. In general, FH patients showed good knowledge, high QOL and were adherent to medication. However, the INSUF group had higher triglycerides levels (1.0 vs 0.9, p < 0.05), lower QOL (0.89 [0.79, 1.00] vs 0.89 [0.85, 1.00], p < 0.05), were more often smokers (14% vs 7%, p < 0.05) and reported more adverse drug reactions (62% vs. 49%, p < 0.05). Conclusions: A health-related outcomes set for FH patients, including PROMs, has been developed, which shows that insufficient knowledge of FH is negatively related to health outcomes. Improving patients' knowledge of FH may lead to better health.

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Section: Medication Adherencementioning

confidence: 99%

The development and first results of a health-related outcomes set in familial hypercholesterolemia (FH) patients: Knowledge is health

et al. 2020

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“…Cohort data facilitated epidemiological and causal inference studies for modifiable risk factors (e.g., smoking) [19-22]. Mortality data and mimicking a hard endpoint trial in follow-up data persuaded insurance companies to provide average premiums for identified and treated mutation-positive individuals [23-25].…”

Section: Aim 1: Assessing the Challenges And Opportunities Of Implemementioning

confidence: 99%

Challenges and Opportunities for Cancer Predisposition Cascade Screening for Hereditary Breast and Ovarian Cancer and Lynch Syndrome in Switzerland: Findings from an International Workshop

Nikolaidis

Ming

Pedrazzani

et al. 2018

Public Health Genomics

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Background: An international workshop on cancer predisposition cascade genetic screening for hereditary breast and ovarian cancer (HBOC) and Lynch syndrome (LS) took place in Switzerland, with leading researchers and clinicians in cascade screening and hereditary cancer from different disciplines. The purpose of the workshop was to enhance the implementation of cascade genetic screening in Switzerland. Participants discussed the challenges and opportunities associated with cascade screening for HBOC and LS in Switzerland (CASCADE study); family implications and the need for family-based interventions; the need to evaluate the cost-effectiveness of cascade genetic screening; and interprofessional collaboration needed to lead this initiative. Methods: The workshop aims were achieved through exchange of data and experiences from successful cascade screening programs in the Netherlands, Australia, and the state of Ohio, USA; Swiss-based studies and scientific experience that support cancer cascade screening in Switzerland; programs of research in psychosocial oncology and family-based studies; data from previous cost-effectiveness analyses of cascade genetic screening in the Netherlands and in Australia; and organizational experience from a large interprofessional collaborative. Scientific presentations were recorded and discussions were synthesized to present the workshop findings. Results: The key elements of successful implementation of cascade genetic screening are a supportive network of stakeholders and connection to complementary initiatives; sample size and recruitment of relatives; centralized organization of services; data-based cost-effectiveness analyses; transparent organization of the initiative; and continuous funding. Conclusions: This paper describes the processes and key findings of an international workshop on cancer predisposition cascade screening, which will guide the CASCADE study in Switzerland.

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“…and lifestyle factors such as diet, phenotypic measures, physical activity (26)(27)(28)(29) and composite lifestyle score changes (30) . In an intervention which targeted both changes in physical activity and dietary intakes, the investigators reported that a tailored programme resulted in more significant lifestyle changes including increases in physical activity levels, decreases in fat and increases in fruit and vegetables intake (26) .…”

Section: Personalised Nutrition -How Effective Is It?mentioning

confidence: 99%

Can metabotyping help deliver the promise of personalised nutrition?

et al. 2015

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Over a decade since the completion of the human genome sequence, the promise of personalised nutrition available to all has yet to become a reality. While the definition was originally very gene-focused, in recent years, a model of personalised nutrition has emerged with the incorporation of dietary, phenotypic and genotypic information at various levels. Developing on from the idea of personalised nutrition, the concept of targeted nutrition has evolved which refers to the delivery of tailored dietary advice at a group level rather than at an individual level. Central to this concept is metabotyping or metabolic phenotyping, which is the ability to group similar individuals together based on their metabolic or phenotypic profiles. Applications of the metabotyping concept extend from the nutrition to the medical literature. While there are many examples of the metabotype approach, there is a dearth in the literature with regard to the development of tailored interventions for groups of individuals. This review will first explore the effectiveness of personalised nutrition in motivating behaviour change and secondly, examine potential novel ways for the delivery of personalised advice at a population level through a metabotyping approach. Based on recent findings from our work, we will demonstrate a novel strategy for the delivery of tailored dietary advice at a group level using this concept. In general, there is a strong emerging evidence to support the effectiveness of personalised nutrition; future work should ascertain if targeted nutrition can motivate behaviour change in a similar manner.

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Can Multiple Lifestyle Behaviours Be Improved in People with Familial Hypercholesterolemia? Results of a Parallel Randomised Controlled Trial

Cited by 31 publications

References 54 publications

The development and first results of a health-related outcomes set in familial hypercholesterolemia (FH) patients: Knowledge is health

The development and first results of a health-related outcomes set in familial hypercholesterolemia (FH) patients: Knowledge is health

Challenges and Opportunities for Cancer Predisposition Cascade Screening for Hereditary Breast and Ovarian Cancer and Lynch Syndrome in Switzerland: Findings from an International Workshop

Can metabotyping help deliver the promise of personalised nutrition?

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