Health-related quality of life in mechanical circulatory support

Development of a new conceptual model and items for self-administration

Kathleen L Grady*, Susan Magasi, Elizabeth A Hahn, Sarah Buono, Edwin C. McGee, Clyde W Yancy

*Corresponding author for this work

Research output: Contribution to journalArticle

11 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)1292-1304
Number of pages13
JournalJournal of Heart and Lung Transplantation
Volume34
Issue number10
DOIs
StatePublished - Oct 1 2015

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Self Administration
Social Adjustment
Quality of Life
Heart Failure
Self Efficacy
Self Care
Interviews
Therapeutics

Keywords

  • content validity
  • health-related quality of life
  • heart failure
  • mechanical circulatory support
  • new model

ASJC Scopus subject areas

  • Surgery
  • Pulmonary and Respiratory Medicine
  • Cardiology and Cardiovascular Medicine
  • Transplantation

Cite this

@article{3f82f092a05148438269c35f4d97d456,
title = "Health-related quality of life in mechanical circulatory support: Development of a new conceptual model and items for self-administration",
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.",
keywords = "content validity, health-related quality of life, heart failure, mechanical circulatory support, new model",
author = "Grady, {Kathleen L} and Susan Magasi and Hahn, {Elizabeth A} and Sarah Buono and McGee, {Edwin C.} and Yancy, {Clyde W}",
year = "2015",
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T1 - Health-related quality of life in mechanical circulatory support

T2 - Development of a new conceptual model and items for self-administration

AU - Grady, Kathleen L

AU - Magasi, Susan

AU - Hahn, Elizabeth A

AU - Buono, Sarah

AU - McGee, Edwin C.

AU - Yancy, Clyde W

PY - 2015/10/1

Y1 - 2015/10/1

N2 - 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.

AB - 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.

KW - content validity

KW - health-related quality of life

KW - heart failure

KW - mechanical circulatory support

KW - new model

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