Experiences of Potential Cancer Symptom and Help Seeking during the UK COVID-19 Pandemic, 2020-2021

Brain, Kate and Cannings-John, Rebecca and Gjini, Ardiana and Goddard, Mark and Grozeva, Detelina and Hepburn, Julie and Hughes, Jacqueline and McCutchan, Grace and Moore, Graham and Moriarty, Yvonne and Osborne, Kirstie and Quinn-Scoggins, Harriet and Robling, Michael and Townson, Julia and Waller, Jo and Whitaker, Katriina and Whitelock, Victoria (2022). Experiences of Potential Cancer Symptom and Help Seeking during the UK COVID-19 Pandemic, 2020-2021. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-855905

Background: The impact of COVID-19 on the UK public attitude towards cancer and potential cancer symptom help-seeking is likely to be considerable, translating into impact on the NHS from delayed referrals, missed screening and later-stage cancer diagnosis.

Aim: The aim of this study was to generate rapid self-report evidence on public views/responses of the covid-19 pandemic on caner symptoms to support and inform public health interventions with the potential to encourage: 1. timely symptom presentation, 2. engagement with cancer screening services and 3. improve cancer-related health behaviours I the wake of the pandemic.

Design: Prospective mixed-methods cohort study in the UK population.

Methods: During June-August 2020, and again six month later, we will conduct UK-wide online population survey of adults ages 18+. We measured attitudes and behaviour in the domains of 1. cancer symptom presentation, 2. intentions to engage with cancer screening, 3. Engagement in cancer-risk behaviours such as smoking, increased alcohol, poor diet and reduced physical activity. We sampled from established online cohorts (via CRUK and HealthWise Wales), supplemented with social media recruitment. Qualitative interviews were conducted with a sub-sample of survey participants to understand contextual influences on cancer attitudes and behaviours.

Data description (abstract)

With COVID-19 at the forefront, people may not have been aware of the importance of seeking medical help for early signs of cancer or taking up screening, when available, to diagnose cancer sooner. In addition, some people may not have wanted to be referred to a hospital for diagnostic tests due to fear of catching coronavirus in the healthcare setting. COVID-19 may have also affected whether people took part in healthy behaviours that could reduce the chances of getting cancer. These factors may have led to more cancers occurring, and more cancers being diagnosed at a late stage when treatment may be less successful.

To understand peoples experiences and attitudes towards potential symptoms of cancer, their help-seeking behaviours and engagement in prevention behaviours (i.e. smoking, diet, exercise, alcohol consumption) during the pandemic we carried out a large study in adults aged 18+ across the UK. We aimed to include adults from a range of different backgrounds.

Working closely with Cancer Research UK, we carried out an online survey with over 7,500 people to ask about any recent symptoms, cancer screening and health behaviours during the UK lockdown period. Survey questions included the time taken to visit the GP with a range of possible cancer symptoms, attitudes to cancer screening, anxiety about seeking help in the current situation, other barriers to seeking help, health behaviours including smoking, alcohol, diet and physical activity, and preferred ways of receiving public health information. The survey was repeated 6 months later to assess any changes in attitudes.

We also interview 26 people (by telephone) who had taken part in the survey across two timepoints (autumn 2020 and spring 2021) to understand their attitudes and behaviours in more detail and how these changed during the course of the pandemic.

Our study findings have been used to help in rapidly developing clear public health messages to encouraging people to act on the early signs of cancer, take up cancer screening when it became available and engage in healthy behaviours. Results from our study have been used to help to reduce the negative impact of COVID-19 on cancer outcomes in the longer term.

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