Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health: A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses

Sabina Sanghera; Axel Walther; Tim J Peters; Joanna Coast

doi:10.1007/s40271-021-00555-7

Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health: A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses

Sabina Sanghera, Axel Walther, Tim J Peters, Joanna Coast

Research output: Contribution to journal › Article (Academic Journal) › peer-review

12 Citations (Scopus)

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Abstract

BACKGROUND: It can be challenging to measure quality of life to calculate quality-adjusted life-years in recurrent fluctuating health states, as quality of life can constantly change. It is not clear how patients who experience fluctuations complete measures and how assessment timing and recall influence responses.

OBJECTIVE: We aimed to understand how patients with fluctuating health complete widely recommended and commonly used measures (EQ-5D-5L, EORTC QLQ-C30 and SF-12) and the extent to which the recall period ('health today', 'past week' and 'past 4 weeks') and timing of assessment influence the way that patients complete these questionnaires.

METHODS: Twenty-four adult patients undergoing chemotherapy for urological, gynaecological or bowel cancers in the UK participated in think-aloud interviews, while completing the measures, completed a pictorial task illustrating how quality of life changed during the chemotherapy cycle and took part in semi-structured interviews. Transcripts were analysed using constant comparison.

RESULTS: Patients were consistent in describing their quality of life as changing considerably throughout a chemotherapy cycle. The shorter recall period of 'health today' does not adequately represent patients' quality of life because of fluctuations, patients remarked they could give a different answer depending on the timing of assessment, and many struggled to combine the "ups and downs" to answer measures with longer recall ('past week' and 'past 4 weeks'). Across all measures, patients attempted to provide averages, adopt the peak-end rule or focus on the best part of their experience. Patients commonly used more than one approach when completing a given questionnaire as well as across questionnaires.

CONCLUSIONS: Patients who experience recurrent fluctuations in health are unable to provide meaningful responses about their quality of life when completing quality-of-life measures due to the recall period and timing of assessment. The use of such responses to calculate health state values in economic evaluations to inform resource allocation decisions in fluctuating conditions must be questioned.

Original language	English
Journal	Patient
Early online date	2 Dec 2021
DOIs	https://doi.org/10.1007/s40271-021-00555-7
Publication status	Published - 2 Dec 2021

Bibliographical note

Funding Information:
This article is independent research supported by the National Institute for Health Research (Post-Doctoral Fellowship, Dr. Sabina Sanghera, PDF-2017-10-008). The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research, Wellcome, or the Department of Health and Social Care. The writing of this paper was supported by a Wellcome Investigator Award (JC) [205384/Z/16/Z]. The funding source was not involved in the design of the study, the collection, analysis and interpretation of data, or the writing of the manuscript.

Funding Information:
Dr. Axel Walther reports having received funding from Tesaro, Roche and AstraZeneca during the 36 months prior to publication for activities outside of the submitted research. The remaining authors, Dr. Sabina Sanghera and Profs. Coast and Peters report no conflict of interests.

Publisher Copyright:
© 2021, The Author(s).

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HEHP@Bristol

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Accounting for the impact of fluctuating health states on quality of life measures included in economic evaluation
Sanghera, S. (Principal Investigator)
1/01/18 → 31/07/23
Project: Research

Cite this

@article{1d352a0cc1d1474db12b499104824217,

title = "Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health: A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses",

abstract = "BACKGROUND: It can be challenging to measure quality of life to calculate quality-adjusted life-years in recurrent fluctuating health states, as quality of life can constantly change. It is not clear how patients who experience fluctuations complete measures and how assessment timing and recall influence responses.OBJECTIVE: We aimed to understand how patients with fluctuating health complete widely recommended and commonly used measures (EQ-5D-5L, EORTC QLQ-C30 and SF-12) and the extent to which the recall period ('health today', 'past week' and 'past 4 weeks') and timing of assessment influence the way that patients complete these questionnaires.METHODS: Twenty-four adult patients undergoing chemotherapy for urological, gynaecological or bowel cancers in the UK participated in think-aloud interviews, while completing the measures, completed a pictorial task illustrating how quality of life changed during the chemotherapy cycle and took part in semi-structured interviews. Transcripts were analysed using constant comparison.RESULTS: Patients were consistent in describing their quality of life as changing considerably throughout a chemotherapy cycle. The shorter recall period of 'health today' does not adequately represent patients' quality of life because of fluctuations, patients remarked they could give a different answer depending on the timing of assessment, and many struggled to combine the {"}ups and downs{"} to answer measures with longer recall ('past week' and 'past 4 weeks'). Across all measures, patients attempted to provide averages, adopt the peak-end rule or focus on the best part of their experience. Patients commonly used more than one approach when completing a given questionnaire as well as across questionnaires.CONCLUSIONS: Patients who experience recurrent fluctuations in health are unable to provide meaningful responses about their quality of life when completing quality-of-life measures due to the recall period and timing of assessment. The use of such responses to calculate health state values in economic evaluations to inform resource allocation decisions in fluctuating conditions must be questioned.",

author = "Sabina Sanghera and Axel Walther and Peters, \{Tim J\} and Joanna Coast",

note = "Funding Information: This article is independent research supported by the National Institute for Health Research (Post-Doctoral Fellowship, Dr. Sabina Sanghera, PDF-2017-10-008). The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research, Wellcome, or the Department of Health and Social Care. The writing of this paper was supported by a Wellcome Investigator Award (JC) [205384/Z/16/Z]. The funding source was not involved in the design of the study, the collection, analysis and interpretation of data, or the writing of the manuscript. Funding Information: Dr. Axel Walther reports having received funding from Tesaro, Roche and AstraZeneca during the 36 months prior to publication for activities outside of the submitted research. The remaining authors, Dr. Sabina Sanghera and Profs. Coast and Peters report no conflict of interests. Publisher Copyright: {\textcopyright} 2021, The Author(s).",

year = "2021",

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doi = "10.1007/s40271-021-00555-7",

language = "English",

journal = "Patient",

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TY - JOUR

T1 - Challenges in Using Recommended Quality of Life Measures to Assess Fluctuating Health

T2 - A Think-Aloud Study to Understand How Recall and Timing of Assessment Influence Patient Responses

AU - Sanghera, Sabina

AU - Walther, Axel

AU - Peters, Tim J

AU - Coast, Joanna

N1 - Funding Information: This article is independent research supported by the National Institute for Health Research (Post-Doctoral Fellowship, Dr. Sabina Sanghera, PDF-2017-10-008). The views expressed in this publication are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research, Wellcome, or the Department of Health and Social Care. The writing of this paper was supported by a Wellcome Investigator Award (JC) [205384/Z/16/Z]. The funding source was not involved in the design of the study, the collection, analysis and interpretation of data, or the writing of the manuscript. Funding Information: Dr. Axel Walther reports having received funding from Tesaro, Roche and AstraZeneca during the 36 months prior to publication for activities outside of the submitted research. The remaining authors, Dr. Sabina Sanghera and Profs. Coast and Peters report no conflict of interests. Publisher Copyright: © 2021, The Author(s).

PY - 2021/12/2

Y1 - 2021/12/2

N2 - BACKGROUND: It can be challenging to measure quality of life to calculate quality-adjusted life-years in recurrent fluctuating health states, as quality of life can constantly change. It is not clear how patients who experience fluctuations complete measures and how assessment timing and recall influence responses.OBJECTIVE: We aimed to understand how patients with fluctuating health complete widely recommended and commonly used measures (EQ-5D-5L, EORTC QLQ-C30 and SF-12) and the extent to which the recall period ('health today', 'past week' and 'past 4 weeks') and timing of assessment influence the way that patients complete these questionnaires.METHODS: Twenty-four adult patients undergoing chemotherapy for urological, gynaecological or bowel cancers in the UK participated in think-aloud interviews, while completing the measures, completed a pictorial task illustrating how quality of life changed during the chemotherapy cycle and took part in semi-structured interviews. Transcripts were analysed using constant comparison.RESULTS: Patients were consistent in describing their quality of life as changing considerably throughout a chemotherapy cycle. The shorter recall period of 'health today' does not adequately represent patients' quality of life because of fluctuations, patients remarked they could give a different answer depending on the timing of assessment, and many struggled to combine the "ups and downs" to answer measures with longer recall ('past week' and 'past 4 weeks'). Across all measures, patients attempted to provide averages, adopt the peak-end rule or focus on the best part of their experience. Patients commonly used more than one approach when completing a given questionnaire as well as across questionnaires.CONCLUSIONS: Patients who experience recurrent fluctuations in health are unable to provide meaningful responses about their quality of life when completing quality-of-life measures due to the recall period and timing of assessment. The use of such responses to calculate health state values in economic evaluations to inform resource allocation decisions in fluctuating conditions must be questioned.

AB - BACKGROUND: It can be challenging to measure quality of life to calculate quality-adjusted life-years in recurrent fluctuating health states, as quality of life can constantly change. It is not clear how patients who experience fluctuations complete measures and how assessment timing and recall influence responses.OBJECTIVE: We aimed to understand how patients with fluctuating health complete widely recommended and commonly used measures (EQ-5D-5L, EORTC QLQ-C30 and SF-12) and the extent to which the recall period ('health today', 'past week' and 'past 4 weeks') and timing of assessment influence the way that patients complete these questionnaires.METHODS: Twenty-four adult patients undergoing chemotherapy for urological, gynaecological or bowel cancers in the UK participated in think-aloud interviews, while completing the measures, completed a pictorial task illustrating how quality of life changed during the chemotherapy cycle and took part in semi-structured interviews. Transcripts were analysed using constant comparison.RESULTS: Patients were consistent in describing their quality of life as changing considerably throughout a chemotherapy cycle. The shorter recall period of 'health today' does not adequately represent patients' quality of life because of fluctuations, patients remarked they could give a different answer depending on the timing of assessment, and many struggled to combine the "ups and downs" to answer measures with longer recall ('past week' and 'past 4 weeks'). Across all measures, patients attempted to provide averages, adopt the peak-end rule or focus on the best part of their experience. Patients commonly used more than one approach when completing a given questionnaire as well as across questionnaires.CONCLUSIONS: Patients who experience recurrent fluctuations in health are unable to provide meaningful responses about their quality of life when completing quality-of-life measures due to the recall period and timing of assessment. The use of such responses to calculate health state values in economic evaluations to inform resource allocation decisions in fluctuating conditions must be questioned.

U2 - 10.1007/s40271-021-00555-7

DO - 10.1007/s40271-021-00555-7

M3 - Article (Academic Journal)

C2 - 34854064

SN - 1178-1653

JO - Patient

JF - Patient

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