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Generic and disease-specific estimates of quality of life in macular degeneration: mapping the MacDQoL onto the EQ-5D-3L

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Abstract

Purpose

The macular degeneration quality of life (MacDQoL) instrument is a validated condition-specific measure of quality of life in patients with macular degeneration. This paper presents the first mapping algorithm to predict EQ-5D from responses to the MacDQoL instrument.

Methods

Responses to the MacDQoL and EQ-5D-3L instruments from 482 patients were collected from the IVAN multicentre trial of two alternative drug treatments for neovascular age-related macular degeneration. Regression specifications were estimated using OLS, censored least absolute deviation, Tobit and two-part models. Their predictive performance was assessed using mean squared error. An internal validation sample based on a random selection of 25 % of patients was used to assess the performance of the model estimated on the remaining 75 % of patients.

Results

A two-part model had the best predictive performance on the full sample. The covariates of this model include responses and weighted impact scores for all 23 condition-specific domains of the MacDQoL, and responses to a general MacDQoL quality of life question. The selected models were successful at predicting means and standard deviations of target populations, but prediction is weaker at the upper and lower extremes of the EQ-5D-3L distribution.

Conclusion

The mapping algorithms provide a means of predicting EQ-5D-3L index scores from MacDQoL scores, and could facilitate cost-effectiveness analyses when the latter but not the former are available to researchers. Further validation of the performance of the algorithms using external data would provide a means of establishing the robustness of the algorithms.

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Notes

  1. Impact response categories are answered in response to questions such as ‘If I did not have macular degeneration, friendships and social life would be…’. Typical categories are ‘very much better' [scoring −3], ‘much better' [scoring −2], ‘a little better' [scoring −1], ‘the same' [scoring 0], and ‘worse’ [scoring +1].

  2. Importance response categories are answered in response to questions such as ‘My friendships and social life are…’ with response categories ‘very important' [scoring 3], ‘important' [scoring 2], ‘somewhat important' [scoring 1], ‘not at all important’ [scoring 0].

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Acknowledgments

The IVAN trial (Trial Registration: ISRCTN92166560) was funded by the National Institute for Health Research (NIHR) Health Technology Assessment (HTA) programme (Project Number 07/36/01). The views and opinions expressed are those of the authors and do not necessarily reflect those of the HTA programme, NIHR, the UK National Health Service or the Department of Health. The NIHR had no role in the design, conduct or reporting of this mapping study. We are grateful to all IVAN trial participants and to the IVAN research team. We are extremely grateful to the IVAN site staff, who collected the EQ-5D-3L data and also the Clinical Trials Evaluation Unit (University of Bristol) who made all the phone calls to collect the MacDQoL data, then managed and cleaned the data for the analyses for this paper. We thank two anonymous reviewers for helpful comments.

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Correspondence to Padraig Dixon.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Written, informed consent was obtained from all individual participants included in the study.

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Dixon, P., Dakin, H. & Wordsworth, S. Generic and disease-specific estimates of quality of life in macular degeneration: mapping the MacDQoL onto the EQ-5D-3L. Qual Life Res 25, 935–945 (2016). https://doi.org/10.1007/s11136-015-1145-x

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