EORTC IADL-BN32 Phase IV
Research type
Research Study
Full title
Development of a questionnaire to measure instrumental activities of daily living (I-ADL) in patients with primary brain tumours and brain metastases: Phase IV international field testing
IRAS ID
271150
Contact name
Christine Brannan
Contact email
Sponsor organisation
East & North Hertfordshire NHS Trust
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Summary of Research
For health care teams it is helpful to know how patients with brain tumour get on with some of the normal every day activities we all take for granted and how this affects their wellbeing. Whilst there are validated questionnaires to assess general quality of life they cover physical, psychological and social issues as well as symptoms which may be a consequence of either the cancer or its treatment. The few questionnaires assessing activities of daily living (ADL) concentrate on basic activities of daily life (BADL) such as feeding, bathing, dressing, toileting and continence; rarely assessing the more complex Instrumental Activities of Daily Living (IADL) such as handling money, using an ATM cash machine, food shopping, driving/transport, using a smart phone or remote control. It is difficult for individuals to function independently in society if they struggle with these activities and have to rely on a carer for help.In previous brain tumour studies we developed a 32 item questionnaire (EORTC BN32 IADL) to measure IADL and the current study aims to check that the questionnaire is valid, reliable (patients give similar responses when there is no change in their condition) and responsive (able to detect a change when a patient's condition changes). The questionnaire will be completed on three occasions (baseline, two weeks later and three months later) by 360 patients internationally with brain tumours of different severities, with and without cognitive problems (e.g. they experience difficulty with their memory or processing information). We hope some patients will identify a carer (family member or close friend) also willing to complete the questionnaire. By comparing the patient and carer results we will see if the carer's response could be used instead of a patient's response, if the patient becomes too unwell.
Summary of Results
Patients with brain tumours may have problems with understanding and carrying out daily activities such as household chores or managing their finances. These are known as “Instrumental Activities of Daily Living†shortened to IADL. This study aimed to validate a questionnaire with 32 questions designed to cover such issues; providing the patient’s doctor with a measure of their difficulties. (The EORTC IADL-BN32). The study was conducted across 10 countries worldwide. 326 patients were recruited with a low grade or high grade brain tumour or brain metastatses (i.e. spread to the brain from another cancer site such as breast). Statistical analysis of the data has demonstrated that the question naturally fall into clusters (scales) covering appropriate issues e.g. domestic life, communication, activities requiring concentration, organising activities or doing hobbies and using IT. This is known as construct validity. Comparisons of scale scores between different groups of patients (e.g. those with more advanced tumours v. less advanced tumours) demonstrated that the questionnaire could distinguish between these group. This is known as sensitivity. The questionnaire was also reliable – patients gave similar answers when asked to complete the questionnaire a few days later. Due to the COVID pandemic it was not possible to collect sufficient data to test for responsiveness – when the patient’s condition is known to have changed and when completing the questionnaire a second time a different response would be expected.
As a patient’s tumour gets worse, there may be a point at which they are no longer capable of completing a questionnaire and someone familiar and close to the patient is asked to do it on their behalf. They are known as a proxy. During the study 311/326 nominated a proxy who completed the questionnaire at the same time. Statistical analysis showed there was good agreement between the patient scores and the proxy scores – though proxies tended to report more problems on all scales than patients.
The study has demonstrated that overall the EORTC IADL-BN32 is good instrument to use in patients with brain tumours and proxy completion also provides meaningful information.REC name
London - Bromley Research Ethics Committee
REC reference
20/LO/0542
Date of REC Opinion
3 Jun 2020
REC opinion
Further Information Favourable Opinion