Measuring the impact of cancer on quality of life and health
Research type
Research Study
Full title
Evaluating the questionnaires used to measure the impact of cancer on quality of life and health completed by people participating in a psychological therapy group following treatment for cancer
IRAS ID
337255
Contact name
Alicia Graham
Contact email
Sponsor organisation
Royal Holloway, University of London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Research Summary: NHS England views quality of life (QoL) as a primary outcome measure for people living with and beyond cancer. There are several cancer-specific patient-reported outcome measures (PROMs), such as the Functional Assessment of Cancer Therapy (FACT; Cella et al., 1993), which claim to measure QoL. However, these measures focus primarily on physical symptoms and functioning. The importance of differentiating health status/functioning from QoL has been discussed in a much cited Lancet commentary (Bradley, 2001) however, many researchers continue to misinterpret their results using health status/functioning measures mislabeled as measures of QoL.
Item selection, content validity and face validity of the CancerDQoL have been established (Garden at al., 2021) and a manuscript detailing the psychometric properties of the CancerDQoL has been submitted for publication (Davidson et al., submitted). There is preliminary evidence to suggest that the CancerDQoL is effective in capturing improvements in cancer-dependent QoL following an online psychological intervention for people with cancer (Taylor et al., submitted). Further research is needed to compare the CancerDQoL to other commonly used patient-reported outcome measures to establish discriminant validity and investigate sensitivity to change.
The project aims to: 1) establish discriminant validity of the CancerDQoL by examining its relationships with commonly used PROMs; 2) examine whether the CancerDQoL and the FACT-G are sensitive to therapeutic change by comparing cancer patients’ post-group-therapy and follow-up scores with baseline; 3) examine whether the an Acceptance and Commitment Therapy (ACT) group intervention for fear of cancer recurrence results in clinically significant changes in cancer-specific QoL, fear of cancer recurrence, distress, and psychological flexibility; 4) explore, qualitatively, patients’ experiences of living with cancer and its treatment and their perceptions of the extent to which the CancerDQoL and other cancer-specific PROMs (i.e. FACT-G) capture the impact of cancer on their QoL.
Summary of Results: Cancer and its treatment can impact an individual’s wellbeing and quality of life (QoL). QoL has been focused on as a key outcome for people with cancer and beyond by the NHS. It is important to measure the QoL of cancer patients because this informs whether we are accurately capturing how cancer impacts people. In turn, we can then develop and deliver interventions to improve QoL. The impact of cancer on people’s QoL can remain beyond their treatment, with many cancer survivors experiencing a high level of worry about their cancer coming back or progressing, which is known as Fear of Cancer Recurrence (FCR).
There are problems with interpreting the research around interventions for cancer and their impact on QoL. This is because many of the measures that claim to capture QoL actually focus on asking patients about their health, symptoms, and functioning. These measures may provide us with a good understanding of how interventions impact participants’ health or functional well-being. The issue is that authors of these studies refer to the measures as QoL measures, which is misleading and can potentially have negative consequences for patients and the support they receive.
Different interventions have been trialled to help improve the QoL of people with cancer. One type of intervention is Acceptance and Commitment Therapy (ACT) which has been shown to be effective in improving a range of outcomes for people with cancer. ACT does not try to avoid suffering, instead accepting that challenging experiences in life are inevitable. It aims to increase mindfulness and encourage people to move towards their values to live a meaningful life. Further research assessing the impact of ACT interventions using accurate measures of QoL is needed.
The Systematic Review (SR) of the literature involved carefully searching for relevant studies across three large scientific databases. The aim of the SR was to look at which questionnaires were used to measure QoL to see if they were genuine measures of QoL or actually measuring something else. The SR also aimed to assess how effective ACT interventions are for improving QoL in adults with cancer. Studies were included in the review if: (i) they concerned adult cancer patients; (ii) used an ACT intervention; and (iii) claimed to measure QoL.
It was found that:
• Sixteen studies were suitable for inclusion, and seven different measures were used to capture QoL.
• Reaching conclusions about the impact of the ACT interventions on QoL was difficult because many of the measures were asking about physical health symptoms or functioning, not QoL.
• ACT showed improvements across the outcome measures used to assess QoL in most studies.
• There was a lot of variation in how much of an effect the interventions had on measures used to assess QoL across studies.The empirical study aimed to address the problem raised in the SR by using a newly developed measure of the impact of cancer on QoL (the CancerDQoL) as an outcome in a study of an ACT intervention for people with FCR. A commonly used measure, which is often referred to as a measure of QoL (the FACT-G), but focuses mainly on health and well-being, was also included for comparison with the CancerDQoL. The first part of the study involved collecting questionnaire data from participants attending a group ACT intervention for people who were experiencing FCR. Participants completed questionnaires measuring FCR, psychological flexibility, distress, along with the CancerDQoL and FACT-G, at the beginning of the intervention, at the end, and at a 2-month follow-up. The second part of the study involved interviewing five participants who had attended one of the groups, to ask about their experience of cancer impacting their QoL, and their perspectives on how well the CancerDQoL and the FACT-G were (or were not) capturing the impact of cancer on their QoL.
It was found that:
• Results from 21 participants across three groups showed that, on average, there was a significant increase in psychological flexibility and decrease in distress between pre-intervention and follow up.
• The average FACT-G scores significantly improved between pre-intervention and post-intervention and follow-up, but the CancerDQoL scores did not significantly improve.
• Reliable and clinically significant change was found in more than half of participants for psychological flexibility and distress.
• There was a moderate relationship between the FACT-G and the CancerDQoL, which suggests they are similar, but not measuring the same thing.
• Interviews with participants raised themes of: shock and reactions to cancer diagnosis, the impact of treatment, and cancer as a journey.
• The majority of the interviewees felt the CancerDQoL was measuring QoL and the FACT-G was measuring well-being.There are important findings from this study which can help to improve how QoL is assessed by researchers and how interventions in clinical services aim to improve QoL. The findings will be shared with the NHS service at Guys Hospital where this study was conducted and will be presented at conferences and published in a journal to reach the wider academic field. Future research assessing the QoL of people with cancer needs to use measures to assess QoL which are specific to the person and to cancer. Future studies will benefit from larger sample sizes and longer follow-ups.
REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
24/WM/0089
Date of REC Opinion
14 May 2024
REC opinion
Further Information Favourable Opinion