Kathleen L Grady1, Susan Magasi2, Elizabeth A Hahn3, Sarah Buono3, Edwin C McGee4, Clyde Yancy5. 1. Division of Cardiac Surgery, Department of Surgery, Northwestern University, Chicago, Illinois. Electronic address: kgrady@nmh.org. 2. Department of Occupational Therapy, University of Illinois at Chicago, Chicago, Illinois. 3. Department of Medical Social Sciences, Northwestern University, Chicago, Illinois. 4. Department of Thoracic and Cardiovascular Surgery, Loyola University, Maywood, Illinois. 5. Division of Cardiology, Department of Medicine, Northwestern University, Chicago, Illinois.
Abstract
BACKGROUND: Generic and heart failure (HF)-specific health-related quality of life (HRQOL) instruments do not address unique burdens of mechanical circulatory support (MCS). This report describes (1) a conceptual model of adjustment to MCS and HRQOL, (2) the development of a new set of items to assess adjustment and HRQOL, and (3) establishes content validity of the new model and items. METHODS: We interviewed 15 expert clinicians, 16 patients with advanced HF, and 48 MCS patients. A grounded theory approach was used to systemically examine qualitative data. We developed a coding dictionary, with codes organized under concepts. A conceptual model of adjustment to MCS and HRQOL was developed. A set of relevant items was generated from the codes, concepts, and conceptual model. After items were refined, MCS patients participated in cognitive interviews to provide feedback on their relevance and acceptability. RESULTS: Patients described how having HF and MCS affected their daily lives. Three concepts regarding adjustment to MCS and its relationship to HRQOL emerged: (1) effect of disease and treatment (satisfaction with treatment, symptoms, and self-efficacy regarding self-care), (2) resources, and (3) implant strategy. From our codes, concepts, and model, we developed a set of 652 items that were categorized by concept. The item set was reduced from 652 items to 236 (36%), and 120 of these 236 items (51%) underwent cognitive debriefing. Our final set includes 239 items with evidence of content validity. CONCLUSIONS: Our newly developed model on adjustment to MCS and HRQOL and items will undergo further testing in the future.
BACKGROUND: Generic and heart failure (HF)-specific health-related quality of life (HRQOL) instruments do not address unique burdens of mechanical circulatory support (MCS). This report describes (1) a conceptual model of adjustment to MCS and HRQOL, (2) the development of a new set of items to assess adjustment and HRQOL, and (3) establishes content validity of the new model and items. METHODS: We interviewed 15 expert clinicians, 16 patients with advanced HF, and 48 MCSpatients. A grounded theory approach was used to systemically examine qualitative data. We developed a coding dictionary, with codes organized under concepts. A conceptual model of adjustment to MCS and HRQOL was developed. A set of relevant items was generated from the codes, concepts, and conceptual model. After items were refined, MCSpatients participated in cognitive interviews to provide feedback on their relevance and acceptability. RESULTS:Patients described how having HF and MCS affected their daily lives. Three concepts regarding adjustment to MCS and its relationship to HRQOL emerged: (1) effect of disease and treatment (satisfaction with treatment, symptoms, and self-efficacy regarding self-care), (2) resources, and (3) implant strategy. From our codes, concepts, and model, we developed a set of 652 items that were categorized by concept. The item set was reduced from 652 items to 236 (36%), and 120 of these 236 items (51%) underwent cognitive debriefing. Our final set includes 239 items with evidence of content validity. CONCLUSIONS: Our newly developed model on adjustment to MCS and HRQOL and items will undergo further testing in the future.
Authors: Christopher S Lee; Jill M Gelow; Christopher V Chien; Shirin O Hiatt; Julie T Bidwell; Quin E Denfeld; Kathleen L Grady; James O Mudd Journal: J Cardiovasc Nurs Date: 2018 Mar/Apr Impact factor: 2.083
Authors: Michael E Nassif; John A Spertus; Philip G Jones; Timothy J Fendler; Larry A Allen; Kathleen L Grady; Suzanne V Arnold Journal: J Heart Lung Transplant Date: 2017-05-20 Impact factor: 10.247
Authors: Quin E Denfeld; Christopher S Lee; William R Woodward; Shirin O Hiatt; James O Mudd; Beth A Habecker Journal: J Cardiovasc Nurs Date: 2019 Jul/Aug Impact factor: 2.083
Authors: Kathleen L Grady; Andrew Kao; John A Spertus; Eileen Hsich; Mary Amanda Dew; Duc-Thinh Pham; Justin Hartupee; Michael Petty; William Cotts; Salpy V Pamboukian; Francis D Pagani; Brent Lampert; Maryl Johnson; Margaret Murray; Koji Takeda; Melana Yuzefpolskaya; Scott Silvestry; James K Kirklin; Adin-Cristian Andrei; Christian Elenbaas; Abigail Baldridge; Clyde Yancy Journal: Circ Heart Fail Date: 2022-10-10 Impact factor: 10.447
Authors: Kathleen L Grady; David C Naftel; Susan Myers; Annetine Gelijins; Alan Moskowitz; Francis D Pagani; James B Young; John A Spertus; James K Kirklin Journal: J Heart Lung Transplant Date: 2016-02-08 Impact factor: 10.247
Authors: Kathleen L Grady; Philip G Jones; Adin Cristian-Andrei; David C Naftel; Susan Myers; Mary Amanda Dew; Katharine Idrissi; Gerdi Weidner; Sherri A Wissman; James K Kirklin; John A Spertus Journal: Circ Cardiovasc Qual Outcomes Date: 2017-12
Authors: Kathleen L Grady; Adin-Cristian Andrei; Christian Elenbaas; Anna Warzecha; Abigail Baldridge; Andrew Kao; John A Spertus; Duc-Thinh Pham; Mary Amanda Dew; Eileen Hsich; William Cotts; Justin Hartupee; Salpy V Pamboukian; Francis D Pagani; Michael Petty; Brent Lampert; Maryl Johnson; Margaret Murray; Koji Takeda; Melana Yuzefpolskaya; Scott Silvestry; James K Kirklin; Clyde Yancy Journal: J Am Heart Assoc Date: 2022-02-12 Impact factor: 6.106
Authors: Kelsey M Flint; John A Spertus; Fengming Tang; Philip Jones; Timothy J Fendler; Larry A Allen Journal: BMC Cardiovasc Disord Date: 2017-03-14 Impact factor: 2.298