Development of an EORTC questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumours: phase I–III

on behalf of the EORTC Quality of Life Group

doi:10.1007/s11136-020-02738-5

Development of an EORTC questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumours: phase I–III

on behalf of the EORTC Quality of Life Group

Clinical Neuropsychology

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

Abstract

Purpose: Being able to function independently in society is an important aspect of quality of life. This ability goes beyond self-care, requires higher order cognitive functioning, and is typically measured with instrumental activities of daily living (IADL) questionnaires. Cognitive deficits are frequently observed in brain tumour patients, however, IADL is almost never assessed because no valid and reliable IADL measure is available for this patient group. Therefore, this measure is currently being developed.

Methods: This international multicentre study followed European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group module development guidelines. Three out of four phases are completed: phases (I) generation of items, (II) construction of the item list, and (III) pre-testing. This paper reports the item selection procedures and preliminary psychometric properties of the questionnaire. Brain tumour patients (gliomas and brain metastases), their informal caregivers, and health care professionals (HCPs) were included.

Results: Phase I (n = 44 patient-proxy dyads and 26 HCPs) generated 59 relevant and important activities. In phase II, the activities were converted into items. In phase III (n = 85 dyads), the 59 items were pre-tested. Item selection procedures resulted in 32 items. Exploratory factor analysis revealed a preliminary dimensional structure consisting of five scales with acceptable to excellent internal consistency (α = 0.73–0.94) and two single items. For three scales, patients with cognitive impairments had significantly more IADL problems than patients without impairments.

Conclusion: A phase IV validation study is needed to confirm the psychometric properties of the EORTC IADL-BN32 questionnaire in a larger international sample.

Original language	English
Pages (from-to)	1491-1502
Number of pages	12
Journal	Quality of Life Research
Volume	30
Issue number	5
Early online date	26 Jan 2021
DOIs	https://doi.org/10.1007/s11136-020-02738-5
Publication status	Published - May 2021

Bibliographical note

Funding

This study was funded by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group. QLG Project Number (Grant Number): 004/2014. The authors thank all patients, their proxies, and health care professionals for their willingness to participate and valuable input in the development of a questionnaire to measure instrumental activities of daily living (IADL) in patients with brain tumours. Furthermore, we would like to thank the health care professionals from each centre for their help with the recruitment of the patients and proxies, and thank the following for their help with patient and proxy data collection: Teresa Young and Tara Chalk (East & North Hertfordshire NHS Trust incorporating Mount Vernon Cancer Centre), Laura Alexander and Will Hewins (Western General Hospital), and Hanneke Zwinkels (Haaglanden Medical Center).

Funders	Funder number
Laura Alexander and Will Hewins (Western General Hospital
Haaglanden Medisch Centrum
European Organisation for Research and Treatment of Cancer	004/2014

UN SDGs

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

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10.1007/s11136-020-02738-5

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title = "Development of an EORTC questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumours: phase I–III",

abstract = "Purpose: Being able to function independently in society is an important aspect of quality of life. This ability goes beyond self-care, requires higher order cognitive functioning, and is typically measured with instrumental activities of daily living (IADL) questionnaires. Cognitive deficits are frequently observed in brain tumour patients, however, IADL is almost never assessed because no valid and reliable IADL measure is available for this patient group. Therefore, this measure is currently being developed. Methods: This international multicentre study followed European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group module development guidelines. Three out of four phases are completed: phases (I) generation of items, (II) construction of the item list, and (III) pre-testing. This paper reports the item selection procedures and preliminary psychometric properties of the questionnaire. Brain tumour patients (gliomas and brain metastases), their informal caregivers, and health care professionals (HCPs) were included. Results: Phase I (n = 44 patient-proxy dyads and 26 HCPs) generated 59 relevant and important activities. In phase II, the activities were converted into items. In phase III (n = 85 dyads), the 59 items were pre-tested. Item selection procedures resulted in 32 items. Exploratory factor analysis revealed a preliminary dimensional structure consisting of five scales with acceptable to excellent internal consistency (α = 0.73–0.94) and two single items. For three scales, patients with cognitive impairments had significantly more IADL problems than patients without impairments. Conclusion: A phase IV validation study is needed to confirm the psychometric properties of the EORTC IADL-BN32 questionnaire in a larger international sample.",

author = "Q. Oort and L. Dirven and S.A.M. Sikkes and N. Aaronson and F. Boele and C. Brannan and J. Egeter and R. Grant and M. Klein and I. Lips and Y. Narita and H. Sato and M. Sztankay and G. Stockhammer and A. Talacchi and B.M.J. Uitdehaag and J.C. Reijneveld and M.J.B. Taphoorn and \{on behalf of the EORTC Quality of Life Group\}",

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year = "2021",

month = may,

doi = "10.1007/s11136-020-02738-5",

language = "English",

volume = "30",

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T1 - Development of an EORTC questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumours: phase I–III

AU - Oort, Q.

AU - Dirven, L.

AU - Sikkes, S.A.M.

AU - Aaronson, N.

AU - Boele, F.

AU - Brannan, C.

AU - Egeter, J.

AU - Grant, R.

AU - Klein, M.

AU - Lips, I.

AU - Narita, Y.

AU - Sato, H.

AU - Sztankay, M.

AU - Stockhammer, G.

AU - Talacchi, A.

AU - Uitdehaag, B.M.J.

AU - Reijneveld, J.C.

AU - Taphoorn, M.J.B.

AU - on behalf of the EORTC Quality of Life Group

PY - 2021/5

Y1 - 2021/5

N2 - Purpose: Being able to function independently in society is an important aspect of quality of life. This ability goes beyond self-care, requires higher order cognitive functioning, and is typically measured with instrumental activities of daily living (IADL) questionnaires. Cognitive deficits are frequently observed in brain tumour patients, however, IADL is almost never assessed because no valid and reliable IADL measure is available for this patient group. Therefore, this measure is currently being developed. Methods: This international multicentre study followed European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group module development guidelines. Three out of four phases are completed: phases (I) generation of items, (II) construction of the item list, and (III) pre-testing. This paper reports the item selection procedures and preliminary psychometric properties of the questionnaire. Brain tumour patients (gliomas and brain metastases), their informal caregivers, and health care professionals (HCPs) were included. Results: Phase I (n = 44 patient-proxy dyads and 26 HCPs) generated 59 relevant and important activities. In phase II, the activities were converted into items. In phase III (n = 85 dyads), the 59 items were pre-tested. Item selection procedures resulted in 32 items. Exploratory factor analysis revealed a preliminary dimensional structure consisting of five scales with acceptable to excellent internal consistency (α = 0.73–0.94) and two single items. For three scales, patients with cognitive impairments had significantly more IADL problems than patients without impairments. Conclusion: A phase IV validation study is needed to confirm the psychometric properties of the EORTC IADL-BN32 questionnaire in a larger international sample.

AB - Purpose: Being able to function independently in society is an important aspect of quality of life. This ability goes beyond self-care, requires higher order cognitive functioning, and is typically measured with instrumental activities of daily living (IADL) questionnaires. Cognitive deficits are frequently observed in brain tumour patients, however, IADL is almost never assessed because no valid and reliable IADL measure is available for this patient group. Therefore, this measure is currently being developed. Methods: This international multicentre study followed European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group module development guidelines. Three out of four phases are completed: phases (I) generation of items, (II) construction of the item list, and (III) pre-testing. This paper reports the item selection procedures and preliminary psychometric properties of the questionnaire. Brain tumour patients (gliomas and brain metastases), their informal caregivers, and health care professionals (HCPs) were included. Results: Phase I (n = 44 patient-proxy dyads and 26 HCPs) generated 59 relevant and important activities. In phase II, the activities were converted into items. In phase III (n = 85 dyads), the 59 items were pre-tested. Item selection procedures resulted in 32 items. Exploratory factor analysis revealed a preliminary dimensional structure consisting of five scales with acceptable to excellent internal consistency (α = 0.73–0.94) and two single items. For three scales, patients with cognitive impairments had significantly more IADL problems than patients without impairments. Conclusion: A phase IV validation study is needed to confirm the psychometric properties of the EORTC IADL-BN32 questionnaire in a larger international sample.

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DO - 10.1007/s11136-020-02738-5

M3 - Article

SN - 0962-9343

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SP - 1491

EP - 1502

JO - Quality of Life Research

JF - Quality of Life Research

IS - 5

ER -

Development of an EORTC questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumours: phase I–III

Abstract

Bibliographical note

Funding

UN SDGs

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