Developing implementation strategies to improve uptake of guideline-recommended treatments for individuals with familial hypercholesterolemia: A protocol

Background Familial hypercholesterolemia (FH) is an inherited lipid disorder that confers high risk for premature cardiovascular disease but remains undertreated. Causes are multifactorial and multilevel, ranging from underprescribing (at the clinician-level) to medication nonadherence (at the patient-level). We evaluated patient and clinician stakeholder barriers and facilitators for treatment of FH to explore possible solutions to the problem. Methods and results Semi-structured interviews and focus groups guided by the Practical, Robust, Implementation and Sustainability Model (PRISM), were conducted with 33 patients and 17 clinician stakeholders across three healthcare systems. A total of14 patients and 9 clinician stakeholders participated in on-site focus groups and the remainder were individual interviews. Transcripts were coded using an iterative process to create a static codebook. We characterized patient and clinician stakeholder barriers into three categories: medical care-, medication-, and life-related. Feasibility of brainstormed solutions varied and was not always representative of the needs of all stakeholders. Patients suggested a need for childhood screening for FH and doctors being persistent about the importance of treating FH, creation of a patient peer group, data transparency, advocacy, and policy changes that would enable patients to receive better treatment. Clinician stakeholders suggested the need for clinical champions. Both groups of stakeholders discussed the need for education about FH. Conclusions Proposed solutions to improve treatment of FH proffered by participants in this study included resources for both patients and clinician stakeholders that clarify cardiovascular disease risks from FH, develop programs to screen for and identify FH at younger ages, and foster open conversations between patients and clinicians about treatment.

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“…A protocol of this study has been published previously [ 16 ]. A brief summary of the methods is included here.…”

Section: Methodsmentioning

confidence: 99%

Barriers, facilitators, and solutions to familial hypercholesterolemia treatment

Jones¹,

Sturm²,

Seaton

et al. 2020

PLoS ONE

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“…Malaysian PCP have great potential to play a key role in the early detection of FH and its management in the community. However, they would require adequate knowledge and awareness regarding FH in order to improve their practice [ 26 ]. Therefore, the novel adaptation and validation of the FH KAP questionnaire in this study was crucial in order to produce a valid and reliable tool to evaluate KAP with regards to FH among PCP in Malaysia.…”

Section: Discussionmentioning

confidence: 99%

“…Their KAP have been found to be suboptimal where less than 50% of the PCP knew of any available FH clinical guidelines; and their knowledge of genetic inheritability, prevalence, criteria for diagnosis and risk of CAD in FH were also found to be low [ 25 ]. Addressing these gaps is essential for effective implementation strategies to improve management of FH among PCP [ 26 ].…”

Section: Introductionmentioning

confidence: 99%

Validity and reliability of an adapted questionnaire measuring knowledge, awareness and practice regarding familial hypercholesterolaemia among primary care physicians in Malaysia

Azraii

Ramli

Ismail

et al. 2021

BMC Cardiovasc Disord

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Background Primary care physicians (PCP) play an important role in detecting Familial Hypercholesterolaemia (FH) early. However, knowledge, awareness and practice (KAP) regarding FH among Malaysian PCP are not well established, and there was no validated tool to assess their FH KAP. Thus, the aim of this study was to adapt an FH KAP questionnaire and determine its validity and reliability among Malaysian PCP. Methods This cross-sectional validation study involved Malaysian PCP with ≥ 1-year work experience in the primary care settings. In Phase 1, the original 19-item FH KAP questionnaire underwent content validation and adaptation by 7 experts. The questionnaire was then converted into an online survey instrument and was face validated by 10 PCP. In Phase 2, the adapted questionnaire was disseminated through e-mail to 1500 PCP. Data were collected on their KAP, demography, qualification and work experience. The construct validity was tested using known-groups validation method. The hypothesis was PCP holding postgraduate qualification (PCP-PG-Qual) would have better FH KAP compared with PCP without postgraduate qualification (PCP-noPG-Qual). Internal consistency reliability was calculated using Kuder Richardson formula-20 (KR-20) and test–retest reliability was tested on 26 PCP using kappa statistics. Results During content validation and adaptation, 10 items remained unchanged, 8 items were modified, 1 item was moved to demography and 7 items were added. The adapted questionnaire consisted of 25 items (11 knowledge, 5 awareness and 9 practice items). A total of 130 out of 1500 PCP (response rate: 8.7%) completed the questionnaire. The mean percentage knowledge score was found to be significantly higher in PCP-PG-Qual compared with PCP-noPG-Qual (53.5, SD ± 13.9 vs. 35.9, SD ± 11.79), t(128) = 6.90, p < 0.001. The median percentage awareness score was found to be significantly higher in PCP-PG-Qual compared with PCP-noPG-Qual (15.4, IqR ± 23.08 vs. 7.7, IqR ± 15.38), p = 0.030. The mean percentage practice score was significantly higher in PCP-PG-Qual compared with PCP-noPG-Qual (69.2, SD ± 17.62 vs. 54.4, SD ± 19.28), t(128) = 3.79, p < 0.001. KR-20 value was 0.79 (moderate reliability) and average Kappa was 0.796 (substantial agreement). Conclusion This study has proven that the 25-item adapted FH KAP questionnaire is valid and reliable. It can be used to measure and establish FH KAP among PCP in Malaysia.

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“…Malaysian PCP are ideally placed at the front line of care to play a pivotal role in detecting and managing FH in the community. However, implementation strategies for improving early diagnosis and care of FH in the community require adequate knowledge, awareness and appropriate practices among the PCP concerning the condition [26]. Therefore, the novel adaptation and validation of the FH KAP questionnaire in this study is crucial in order to produce a valid and reliable tool to assess KAP regarding FH among Malaysian PCP.…”

Section: Discussionmentioning

confidence: 99%

“…Their KAP have been found to be suboptimal where less than half of the PCP were aware of FH clinical guidelines; and their knowledge of prevalence, inheritability, diagnostic criteria and CAD risk of FH were also found to be low [25]. Addressing these gaps is essential for effective implementation strategies to improve management of FH among PCP [26].…”

Section: Introductionmentioning

confidence: 99%

Adaptation and validation of a questionnaire measuring knowledge, awareness and practice regarding familial hypercholesterolaemia among primary care physicians in Malaysia

Azraii

Ramli

Ismail

et al. 2019

Preprint

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Background: Primary care physicians (PCP) play an important role in early detection of Familial Hypercholesterolaemia (FH). However, knowledge, awareness and practice (KAP) regarding FH among Malaysian PCP are not well established, and there was no validated tool to assess their FH KAP. Therefore, this study aimed to adapt an FH KAP questionnaire and to determine its validity and reliability among Malaysian PCP. Methods: This cross-sectional validation study involved PCP with ≥1-year working experience in the Malaysian primary care settings. In Phase 1, the original 19-item FH KAP questionnaire was content validated and adapted by 7 experts. The questionnaire was then converted into an online survey instrument and was face validated by 10 PCP. In Phase 2, the adapted questionnaire was distributed via e-mail to 1500 PCP for self-administration. Data were collected on their KAP, demography, qualification and work experience. The construct validity was tested using known-groups validation method. PCP with postgraduate qualification (PCP-PG-Qual) were hypothesized to have better FH KAP compared with PCP without postgraduate qualification (PCP-noPG-Qual). The internal consistency reliability was tested using Kuder Richardson formula-20 (KR-20) and test-retest reliability was tested on 26 PCP using kappa statistics. Results: During content validation and adaptation, 10 items remained unchanged, 8 items were modified, 1 item was moved to demography and 7 items were added. The adapted questionnaire contained 25 items (11 knowledge, 5 awareness and 9 practice items). A total of 130 out of 1500 PCP (response rate: 8.7%) completed the questionnaire. The mean percentage knowledge score was significantly higher in PCP-PG-Qual compared to PCP-noPG-Qual (53.5, SD±13.9 vs. 35.9, SD±11.79), t(128)=6.90, p<0.001. The median percentage awareness score was significantly higher in PCP-PG-Qual compared to PCP-noPG-Qual (15.4, IqR±23.08 vs. 7.7, IqR±15.38), p=0.030. The mean percentage practice score was significantly higher in PCP-PG-Qual compared to PCP-noPG-Qual (69.2, SD±17.62 vs. 54.4, SD±19.28), t(128)=3.79, p<0.001. The KR-20 was 0.79 (moderate reliability) and average Kappa was 0.796 (substantial agreement). Conclusion: The robust validation methods and findings suggest that the adapted 25-item questionnaire is a valid and reliable tool to measure FH KAP among Malaysian PCP. This would aid to improve FH care in the community.

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Developing implementation strategies to improve uptake of guideline-recommended treatments for individuals with familial hypercholesterolemia: A protocol

Cited by 11 publications

References 40 publications

Barriers, facilitators, and solutions to familial hypercholesterolemia treatment

Barriers, facilitators, and solutions to familial hypercholesterolemia treatment

Validity and reliability of an adapted questionnaire measuring knowledge, awareness and practice regarding familial hypercholesterolaemia among primary care physicians in Malaysia

Adaptation and validation of a questionnaire measuring knowledge, awareness and practice regarding familial hypercholesterolaemia among primary care physicians in Malaysia

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