Laney K Jones1, Samuel S Gidding2, Terry L Seaton3, Anne Goldberg4, Christina Gregor5, Amy C Sturm6, Ross C Brownson7, Alanna Kulchak Rahm6, Marc S Williams6. 1. Center for Pharmacy Innovation and Outcomes, Geisinger, Danville, PA, USA. Electronic address: ljones14@geisinger.edu. 2. Familial Hypercholesterolemia Foundation, Pasadena, CA, USA. 3. St. Louis College of Pharmacy, St. Louis, MO, USA; Mercy Clinic-East Communities, St. Louis, MO, USA. 4. Washington University School of Medicine, Washington University in St. Louis, St. Louis, MO, USA. 5. Center for Pharmacy Innovation and Outcomes, Geisinger, Danville, PA, USA. 6. Genomic Medicine Institute, Geisinger, Danville, PA, USA. 7. Prevention Research Center in St. Louis, Brown School, Washington University in St. Louis, St. Louis, MO, USA; Department of Surgery (Division of Public Health Sciences), Alvin J. Siteman Cancer Center, Washington University School of Medicine; Washington University in St. Louis, St. Louis, MO, USA.
Abstract
BACKGROUND: Familial hypercholesterolemia (FH) affects more than one million Americans, and most individuals have not been formally diagnosed with the condition. Individuals with FH have markedly elevated serum low-density lipoprotein cholesterol (LDL-C) levels from birth that substantially increase their risk for early-onset cardiovascular (CV) events. Guideline-recommended treatments exist to lower LDL-C and reduce the risk of CV events in individuals with FH and hypercholesterolemia. This study seeks to address a significant gap in the care of individuals with FH by systematically developing an effective approach to increase the adoption of guideline-recommended treatments for FH. METHODS: This developmental study will consist of three aims: 1) determine the barriers to and facilitators of treatment of FH; 2) develop a list of potential implementation strategies to promote the adoption of guideline-recommended treatment of individuals with FH, and 3) pilot one implementation strategy from Aim 2 in one health care system to evaluate implementation outcomes of the strategy. The Practical, Robust Implementation and Sustainability Model will guide this project, including the development of interview questions, implementation strategies, and evaluation of the implementation strategy. The implementation outcomes include: of individuals targeted by the implementation strategy, how many are impacted by it (reach), measure the change in knowledge, attitude, and behavior that is impacted by the implementation strategy (effectiveness), in settings targeted by the implementation strategy, how many adopt it (adoption), and fidelity and cost of the implementation strategy (implementation). Data sources will include electronic health records, administrative databases, surveys, and semi-structured interviews. DISCUSSION: The inclusion of patient and organizational stakeholder experiences is a critically important step in developing efficient and effective implementation strategies. Additionally, perspectives from a variety of geographic areas and cultural perspectives should increase feasibility and fidelity of the interventional approach to improve adoption of guideline-recommended practices for FH care.
BACKGROUND: Familial hypercholesterolemia (FH) affects more than one million Americans, and most individuals have not been formally diagnosed with the condition. Individuals with FH have markedly elevated serum low-density lipoprotein cholesterol (LDL-C) levels from birth that substantially increase their risk for early-onset cardiovascular (CV) events. Guideline-recommended treatments exist to lower LDL-C and reduce the risk of CV events in individuals with FH and hypercholesterolemia. This study seeks to address a significant gap in the care of individuals with FH by systematically developing an effective approach to increase the adoption of guideline-recommended treatments for FH. METHODS: This developmental study will consist of three aims: 1) determine the barriers to and facilitators of treatment of FH; 2) develop a list of potential implementation strategies to promote the adoption of guideline-recommended treatment of individuals with FH, and 3) pilot one implementation strategy from Aim 2 in one health care system to evaluate implementation outcomes of the strategy. The Practical, Robust Implementation and Sustainability Model will guide this project, including the development of interview questions, implementation strategies, and evaluation of the implementation strategy. The implementation outcomes include: of individuals targeted by the implementation strategy, how many are impacted by it (reach), measure the change in knowledge, attitude, and behavior that is impacted by the implementation strategy (effectiveness), in settings targeted by the implementation strategy, how many adopt it (adoption), and fidelity and cost of the implementation strategy (implementation). Data sources will include electronic health records, administrative databases, surveys, and semi-structured interviews. DISCUSSION: The inclusion of patient and organizational stakeholder experiences is a critically important step in developing efficient and effective implementation strategies. Additionally, perspectives from a variety of geographic areas and cultural perspectives should increase feasibility and fidelity of the interventional approach to improve adoption of guideline-recommended practices for FH care.
Authors: Stephen D Persell; Donald M Lloyd-Jones; Elisha M Friesema; Andrew J Cooper; David W Baker Journal: J Gen Intern Med Date: 2012-11-11 Impact factor: 5.128
Authors: Anne C Goldberg; Paul N Hopkins; Peter P Toth; Christie M Ballantyne; Daniel J Rader; Jennifer G Robinson; Stephen R Daniels; Samuel S Gidding; Sarah D de Ferranti; Matthew K Ito; Mary P McGowan; Patrick M Moriarty; William C Cromwell; Joyce L Ross; Paul E Ziajka Journal: J Clin Lipidol Date: 2011-04-12 Impact factor: 4.766
Authors: Amy C Sturm; Joshua W Knowles; Samuel S Gidding; Zahid S Ahmad; Catherine D Ahmed; Christie M Ballantyne; Seth J Baum; Mafalda Bourbon; Alain Carrié; Marina Cuchel; Sarah D de Ferranti; Joep C Defesche; Tomas Freiberger; Ray E Hershberger; G Kees Hovingh; Lala Karayan; Johannes Jacob Pieter Kastelein; Iris Kindt; Stacey R Lane; Sarah E Leigh; MacRae F Linton; Pedro Mata; William A Neal; Børge G Nordestgaard; Raul D Santos; Mariko Harada-Shiba; Eric J Sijbrands; Nathan O Stitziel; Shizuya Yamashita; Katherine A Wilemon; David H Ledbetter; Daniel J Rader Journal: J Am Coll Cardiol Date: 2018-08-07 Impact factor: 24.094
Authors: Byron J Powell; Rinad S Beidas; Cara C Lewis; Gregory A Aarons; J Curtis McMillen; Enola K Proctor; David S Mandell Journal: J Behav Health Serv Res Date: 2017-04 Impact factor: 1.505
Authors: Stephen D Persell; Tiffany Brown; Ji Young Lee; Eric Henley; Timothy Long; Thomas Sanchez; Regina Knight Journal: J Eval Clin Pract Date: 2016-12-27 Impact factor: 2.431
Authors: Børge G Nordestgaard; M John Chapman; Steve E Humphries; Henry N Ginsberg; Luis Masana; Olivier S Descamps; Olov Wiklund; Robert A Hegele; Frederick J Raal; Joep C Defesche; Albert Wiegman; Raul D Santos; Gerald F Watts; Klaus G Parhofer; G Kees Hovingh; Petri T Kovanen; Catherine Boileau; Maurizio Averna; Jan Borén; Eric Bruckert; Alberico L Catapano; Jan Albert Kuivenhoven; Päivi Pajukanta; Kausik Ray; Anton F H Stalenhoef; Erik Stroes; Marja-Riitta Taskinen; Anne Tybjærg-Hansen Journal: Eur Heart J Date: 2013-08-15 Impact factor: 29.983
Authors: J S Benner; L Erhardt; M Flammer; R A Moller; N Rajicic; K Changela; C Yunis; S B Cherry; Z Gaciong; E S Johnson; M C J M Sturkenboom; J García-Puig; X Girerd Journal: Int J Clin Pract Date: 2008-08-07 Impact factor: 2.503
Authors: Marina Cuchel; Eric Bruckert; Henry N Ginsberg; Frederick J Raal; Raul D Santos; Robert A Hegele; Jan Albert Kuivenhoven; Børge G Nordestgaard; Olivier S Descamps; Elisabeth Steinhagen-Thiessen; Anne Tybjærg-Hansen; Gerald F Watts; Maurizio Averna; Catherine Boileau; Jan Borén; Alberico L Catapano; Joep C Defesche; G Kees Hovingh; Steve E Humphries; Petri T Kovanen; Luis Masana; Päivi Pajukanta; Klaus G Parhofer; Kausik K Ray; Anton F H Stalenhoef; Erik Stroes; Marja-Riitta Taskinen; Albert Wiegman; Olov Wiklund; M John Chapman Journal: Eur Heart J Date: 2014-07-22 Impact factor: 35.855
Authors: Laney K Jones; Marc S Williams; Ilene G Ladd; Dylan Cawley; Shuping Ge; Jing Hao; Dina Hassen; Yirui Hu; H Lester Kirchner; Maria Kobylinski; Michael G Lesko; Matthew C Nelson; Alanna K Rahm; David D Rolston; Katrina M Romagnoli; Tyler J Schubert; Timothy C Shuey; Amy C Sturm; Samuel S Gidding Journal: J Pers Med Date: 2022-04-09
Authors: Laney K Jones; Amy C Sturm; Terry L Seaton; Christina Gregor; Samuel S Gidding; Marc S Williams; Alanna Kulchak Rahm Journal: PLoS One Date: 2020-12-23 Impact factor: 3.240
Authors: Laney K Jones; Nicole Walters; Andrew Brangan; Catherine D Ahmed; Katherine A Wilemon; Gemme Campbell-Salome; Alanna K Rahm; Samuel S Gidding; Amy C Sturm Journal: Am J Prev Cardiol Date: 2022-04-18
Authors: Gerald F Watts; David R Sullivan; David L Hare; Karam M Kostner; Ari E Horton; Damon A Bell; Tom Brett; Ronald J Trent; Nicola K Poplawski; Andrew C Martin; Shubha Srinivasan; Robert N Justo; Clara K Chow; Jing Pang Journal: Am J Prev Cardiol Date: 2021-02-04