Cancer testing appointments in people with anxiety or depression
Research type
Research Study
Full title
A mixed-methods study of attendance at suspected cancer investigations in people with anxiety and/or depression: an observational cohort study and interview study to inform the design of a discrete choice instrument survey
IRAS ID
323981
Contact name
Sarah Price
Contact email
Sponsor organisation
University of Exeter
Duration of Study in the UK
0 years, 10 months, 31 days
Research summary
Research Summary:
Research suggests that cancer outcomes are worse in people with existing anxiety and/or depression than in those without these conditions. Contributing factors may include non-attendance at appointments for cancer diagnostic tests requested by general practitioners. This 11-month formative study is funded by NIHR SPCR. It will underpin future research to develop, validate, and use a survey instrument to understand the preferences for cancer testing in people with anxiety and/or depression.
We will quantify the problem by studying the medical records of people diagnosed with cancer, none of whom are identifiable personally. We will test if anxiety or depression is associated with attending appointments for cancer tests that family doctors arrange. We will quantify how much any difference in stage and survival between attenders and non-attenders is attributable to anxiety and/or depression.Our complementary qualitative work will explore the perspectives, needs, and priorities ("attributes") of people with anxiety and/or depression when they are invited for cancer testing. A qualitative researcher will hold one-to-one, semi-structured interviews with approximately 24 people with anxiety and/or depression recruited via the Southwest Peninsula Clinical Research Network. We will recruit from five general practices representing geographically diverse settings. The interviews will draw out the attributes that matter to people when deciding whether to attend an appointment for cancer testing. The interview Topic Guide is based on areas such as knowledge and beliefs of the risks and benefits of cancer tests, and social and environmental influences.
With our patient and public involvement partners, and in workshop activities we will bring our results together to collate a list of the most important attributes for people with anxiety and/or depression when deciding to attend cancer testing appointments. This will ensure we include meaningful questions when we develop and validate our survey instrument to use in future research.
Lay summary of study results:
Why was the research needed?
People with anxiety and/or depression are no more likely to develop cancer than the general population but they do tend to have poorer cancer outcomes. For example, people with anxiety and/or depression are more likely to have their cancer diagnosed following an emergency event. They are also more likely to die within 30 days of their cancer diagnosis.What were the main questions studied?
We looked at one factor that might play a role in the poorer cancer outcomes experienced by people with anxiety and/or depression. We explored whether having anxiety and/or depression is a barrier to attending hospital appointments for tests that check if someone has cancer. We chose this question because missing appointments delays cancer diagnosis and treatment, giving the tumour time to grow and spread. People who are diagnosed after cancer has spread have poorer chances of survival. We took two approaches.
In a big data study, our questions were:
1. Is anxiety and/or depression associated with missing urgent referral appointments?
2. Do people with anxiety and/or depression have poorer cancer outcomes because they miss urgent referral appointments?
In an interview study, our aim was to explore what is important to people with anxiety and/or depression when deciding whether to attend or to miss an urgent cancer referral appointment.Who carried out the research?
The National Institutes for Health Research School for Primary Care Research (grant 641) funded researchers at University of Exeter to study this problem in 2023-24. Researchers took statistical and qualitative approaches.Public involvement
Our study was supported by a public and patient involvement (PPI) group, consisting of three White women and one White man. They were recruited via the University of Exeter PenARC Patient and Public Involvement Team. They all have lived experience of anxiety and/or depression. Some PPI members also have experience of cancer testing, or of living with cancer, or supporting loved ones who are living with, or who have died from, cancer.
Our original grant application was informed by discussions with our PPI group, to make sure that we were asking important and relevant questions.
During the study, we had two 1-hour meetings with four PPI representatives. In October 2023, we met to plan our ways of working, agree the best way to share results, and to prepare for a workshop. At the March 2024 meeting, we presented early findings from our big data study and the interviews. We worked to bring all the results together.
In July 2024, we held workshop activities with the PPI representatives, as described below.Who participated in the study?
For the big data study, we analysed the medical records of over one-hundred-and-sixty-five thousand people with cancer. All of them had received an urgent referral before their diagnosis. We did not know any personal information about them. Their average age was 70 years and just over half the sample were men. About one in eight people had been diagnosed with anxiety and/or depression before their cancer diagnosis. About one in six people did not attend their urgent referral.
For the interview study, we recruited twenty-four people with anxiety and/or depression with help from the South West Clinical Research Network. Our participant group was half male and half female, and equally divided between three diagnosis groups: anxiety, depression or mixed anxiety with depression. All were aged 40 years or more at the time of the interview.Where and when the study took place
For the big data study, the one-hundred-and-sixty-five thousand people were registered with general practices in England. They had all been diagnosed with a cancer between 2012 and 2018.
For the interview study, all participants were registered at one of five general practices in southwest England. The general practices served a mix of rural, urban and coastal populations.
The one-to-one interviews were conducted by a single researcher. They took place over the telephone or online via Zoom, and the participants could choose a place where they felt safe and comfortable. The interviews happened between December 2023 and February 2024. They started after participants had consented to take part and lasted for up to 1 hour.What happened during the study?
For the big data study, we used statistical models to describe the association between anxiety and/or depression and not attending the urgent referral. The result was expressed as an odds ratio. This compares the chances of missing the appointment between people with and people without anxiety and/or depression.
Then we used statistical methods to compare outcomes between people with and without anxiety and/or depression. We looked at two outcomes. The first was whether the cancer had spread before it was diagnosed. The second was the chance of living for at least one year after diagnosis. Finally, we tested if any differences in outcomes between people with and people without anxiety and/or depression were down to missing the urgent referral appointment.
For the interview study, we asked the participants to imagine a situation that was read out to them. The situation was that they had gone to their family doctor and had later received an urgent cancer referral. This was used as the basis for seeing how anxiety and/or depression might affect their decision to attend or to miss the referral appointment. Interviews were recorded and typed up, with any personal information removed to protect participants’ identities.
In workshop activities, we worked with members of the public to start to identify themes from the interviews. We also agreed plain English wording to describe these themes that would be suitable for use in patient-facing materials.What were the results of the study?
The big data study showed that having anxiety and/or depression was associated with an 8% higher chance of missing the urgent referral appointment. When we looked at the outcomes, we found a mixed picture. People with anxiety and/or depression were less likely to be diagnosed with advanced-stage cancer (i.e. a cancer that has spread). However, they were less likely to live for at least one year after their diagnosis. We found no evidence that missing the urgent referral was driving the differences in outcomes between people with and without anxiety and/or depression.Six main themes emerged from the interviews: communication, filling in the gaps, logistics, trust, fear and self-worth, and responsibility.
Communication was important to participants, particularly in the gap between receiving the urgent referral and the day of the actual appointment. Participants told us that the quality and the quantity of the communication could either encourage them to attend or put them off. Some participants said they would want as much information as possible. For them, visualising and planning the appointment day was part of their strategy for being able to attend. Other participants would only want the basics, such as date, place and time. They said that any more would be overwhelming and off-putting.
Filling in the gaps: where information or communication was lacking, some people said they would go to other resources to “fill in the gaps”. This increased the chances of finding misinformation that might put them off attending.
Logistics: Participants said that they would focus on how to get to the appointment, if someone could go with them, and what the testing entailed. For some, their anxiety meant they were unable to use public transport and the difficulty of getting to the hospital and parking would be too much. Some participants felt that their depression might mean they would not be able to get out of bed on the day of their appointment.
Trust: Participants talked about the importance of trust in healthcare professionals, in the healthcare system, in the test results, and in their own body. Depending on their personality, trust could encourage them to attend the appointment, or it could act as a barrier.
Fear and self-worth: For some participants, the fear of the test and the possibility of cancer may be too overwhelming to even think about going to the appointment. Some participants thought that having good social support may help them to overcome those barriers.
Responsibility: Some participants said they would feel a responsibility or duty to their family (if not themselves) to attend the appointment. However, they knew they would need to use a variety of ways to make sure they did go to the appointment.How has this study helped patients and researchers?
Our big data study shows that people with anxiety and/or depression are more likely to miss their urgent referral appointments for cancer testing. It also shows that they are less likely to live for at least one year after diagnosis, but that this is not driven by missing the urgent referral. Our results have not given us all the answers to why people with anxiety and/or depression have poor cancer outcomes, but they have helped us to decide what research we need to do next.
Our interview study has found some important barriers to attending urgent cancer referrals faced by people who have anxiety and/or depression. Removing these barriers will reduce their chances of missing these important appointments and help make it a less stressful experience for patients.Details of any further research planned
Further studies are in the planning stage. We want to use more big data studies to explore possible reasons for the early death of cancer patients who have anxiety and/or depression. We also want to dig deeper into the barriers to attending appointments and think about what we could do differently to help people overcome these barriers to improve their experiences and chances of attending urgent cancer referrals.Where can I learn more about this study?
Contact Dr Sarah Price at S.J.Price@exeter.ac.ukREC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
23/YH/0141
Date of REC Opinion
6 Jul 2023
REC opinion
Favourable Opinion