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 Jr; Clyde Yancy

doi:10.1016/j.healun.2015.04.003

Health-related quality of life in mechanical circulatory support: Development of a new conceptual model and items for self-administration

J Heart Lung Transplant. 2015 Oct;34(10):1292-304. doi: 10.1016/j.healun.2015.04.003. Epub 2015 May 4.

Authors

Kathleen L Grady¹, Susan Magasi², Elizabeth A Hahn³, Sarah Buono³, Edwin C McGee Jr⁴, Clyde Yancy⁵

Affiliations

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.

PMID: 26111595
DOI: 10.1016/j.healun.2015.04.003

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Aged
Emotional Adjustment
Female
Grounded Theory
Health Status
Heart Failure / psychology*
Heart Failure / therapy*
Heart-Assist Devices*
Humans
Male
Middle Aged
Outcome Assessment, Health Care
Quality of Life*
Self Report
Young Adult