Improving the conceptualisation and measurement of quality of life

Improving the conceptualisation and measurement of quality of life of patients with multiple chronic morbidities, exemplified by patients with cardiac disease undergoing cardiac intervention

This project aims to improve the conceptualisation of Quality of Life and enhance the sensitivity and comprehensiveness of its measurement.

Project team
• Principal investigator: prof.dr. M.A.G. Sprangers

• Other team members:  dr. I Hartog, dr. M. Scherer-Rath, prof.dr. H.W.M. van Laarhoven (Amsterdam UMC), dr. P.T. Nieuwkerk, prof.dr. D. Willems, prof.dr. B. de Mol, dr. J.P.S. Henriques, prof.dr. B.J.M. Mulder, dr. W.B. van den Hout, dr. M.A. Joore, prof.dr. P. Delespaul, dr. N.B. Peek, prof.dr. F.J. Oort, prof.dr. M.L. Essink-Bot, drs. W. van Renselaar, prof.dr. C.E.S. Schwartz, prof.dr. AH Zwinderman, MD D. Arts.

Despite apparent changes in health, patients may report a surprisingly stable Quality of Life (QoL). Two key causes are addressed that are generally ignored in QoL research: (1) standard QoL questionnaires predominantly tap stable (trait) rather than changeable (state) components of QoL; and (2) they do not take changes in internal standards, values and conceptualisation of QoL (so called response shifts) into account.

The overall objective of this project was to improve the conceptualisation of QoL and enhance the sensitivity and comprehensiveness of its measurement by taking the trait-state distinction and response shift into account.

This project offers: (1) a new theoretical approach to QoL from a narrative perspective incorporating a theory of contingency to evaluate the implications of the trait-state distinction of QoL and response shift; (2) an Ecological Momentary Assessment (EMA) application of QoL involving repeated sampling of subjects’ current QoL in real-time (assessing state) using smartphones; (3) guidelines integrating state and trait components of QoL and response-shift assessments to enhance QoL research.

Patients with cardiac disease and multiple morbidities were targeted because these conditions are highly prevalent and are associated with high patient burden and societal costs. Moreover, these patients are perfectly suitable for testing the proposed methodology.

This study provides insight into the indicators of patients’ QoL. The innovative and fundamental conceptualisation and measurement of QoL is, in principle, applicable to other disease groups and care innovations, and will enhance the evidence base for care provision, allocation, and reimbursement.

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