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Cognitive interviewing of bereaved relatives to improve the measurement of health outcomes and care utilisation at the end of life in a mortality followback survey

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Abstract

Purpose

The evaluation of end of life care via bereaved relatives is increasingly common. We aimed to improve the measurement of health outcomes and care utilisation at the end of life with this population.

Methods

A cross-sectional study of 20 bereaved relatives of cancer patients was conducted. In phase I, nine underwent a cognitive interview for 65–150 min using five measures: Client Service Receipt Inventory, Life Before Death survey care satisfaction items, Palliative care Outcome Scale (POS), EQ-5D and Core Bereavement Items (CBI). In phase II, items/scales were revised and tested with a further 11 participants. Content analysis explored information processing and errors.

Results

All 20 participants understood most questions despite finding them demanding and intense. Judging the accuracy of information and formulating final answers posed more difficulties than recalling facts. Uncertainty and missing data on care utilisation were often due to estimating averages; consequently categories were introduced. Participants perceived the care satisfaction rating scale to be positively biased; a very poor category was added. POS was seen to ask relevant but sometimes difficult questions, whilst the EQ-5D produced fewer missing data but lacked intermediate categories. CBI had terms that participants felt were unfamiliar, unrealistic, unclear or too strong; hence, we changed to the Texas Revised Inventory of Grief (with no problems identified).

Conclusions

Cognitive interviewing helped select measures and make changes that improved the measurement of health outcomes and care utilisation at the end of life with bereaved relatives. The use of both generic and specific health measures and cost measurement in bereavement is encouraged.

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Abbreviations

POS:

Palliative care Outcome Scale

LBD:

Life Before Death survey

CBI:

Core Bereavement Items

TRIG:

Texas Revised Inventory of Grief

VAS:

Visual analogue scale

CSRI:

Client Service Receipt Inventory

UK:

United Kingdom

USA:

United States of America

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Acknowledgments

We are most grateful to the participants. We also thank the funders—Cicely Saunders International—for their dedicated support, which made this study possible. The funders had no role in the design, collection, analysis and interpretation of data, writing of the manuscript and in the decision to submit the manuscript for publication. Thanks to Meena Valambhia for all her help organising the study, to Philippa Johnston, Dr. Anne Louise Jennings, Dr. Clare Smith and Carol Marlow for identifying the sample and to members of the ethics committee for their helpful comments and discussion. Thanks to Natalia Calanzani for her editing support and to the anonymous reviewers for their comments, which helped us improve the paper.

Conflict of interest

The authors have received funding in the past two years from the Department of Health (partner in the study) for conducting end of life care research and, although unlikely, it is possible this organisation may gain or lose financially from the publication of this manuscript. The authors declare that they have no other conflict of interests. The authors have full control of all primary data and agree to allow the journal to review their data if requested.

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Authors and Affiliations

  1. King’s College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK

    Barbara Gomes, Sue Hall, Jonathan Koffman & Irene J. Higginson

  2. King’s College London, Institute of Psychiatry, Department of Health Service and Population Research, Box P024, De Crespigny Park, London, SE5 8AF, UK

    Paul McCrone

  3. Royal Marsden Hospital NHS Trust, Department of Palliative Medicine, London, SW3 6JJ, UK

    Julia Riley

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  1. Barbara Gomes
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  3. Sue Hall
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  4. Julia Riley
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  5. Jonathan Koffman
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  6. Irene J. Higginson
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Correspondence to Barbara Gomes.

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Gomes, B., McCrone, P., Hall, S. et al. Cognitive interviewing of bereaved relatives to improve the measurement of health outcomes and care utilisation at the end of life in a mortality followback survey. Support Care Cancer 21, 2835–2844 (2013). https://doi.org/10.1007/s00520-013-1848-x

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