Keywords: Cancer, Primary Care, Europe, Qualitative Research, Delayed Diagnosis

Background:

Timely diagnosis of cancer is a key part of health policy throughout Europe. However, it is uncertain whether late diagnosis is due to patients with cancer presenting later, not being referred quickly enough from primary care, or whether they are inefficiently managed in secondary care. There is a gap in the evidence on the views of patients and clinicians on the causes of delayed diagnosis and how the views of these groups compare.

Research questions:

What, from their experience, do European patients, primary and secondary healthcare professionals think are the main causes of delayed cancer diagnosis?
What between-group differences are there in their views?

Method:

A multicentre, qualitative survey of (1) patients, their loved ones and caregivers, (2) primary and (3) secondary care clinicians from across Europe.
We will use an anonymous online survey, with demographic questions and a single open-ended question asking ‘What, from your own experience, do you think are the main causes of delayed cancer diagnosis?’
National Leads will arrange for translations of the questionnaire into their local languages where these are not English. Translation and validation will be done in a standardised way for each country.
We will examine the data using thematic analysis.

Results:

We will conduct the study in a stratified sample of at least ten ÖRG European countries, with the aim of recruiting at least ten participants from each group (patients/loved ones/carers, primary care clinicians, secondary care clinicians) per country, from countries in the each of the Northern, Southern, Eastern, Western and Central European geographical areas.

Conclusions:

We expect our evidence to be useful to guide better patient public health campaigns on when and how to seek medical advice for potential cancer symptoms, examine less-studied factors contributing to delays (such as psychological barriers, misdiagnosis and healthcare inequalities), and inform policy and healthcare improvements.

Points for discussion:

Should participating clinicians be allowed to recruit their own patients to complete the questionnaire?

What is the best way to compare the differences in the qualitative answers from patients, primary and secondary healthcare professionals?

We expect that many respondents will be clinicians who have also had cancer, or been a loved one of someone who has had cancer. How should we take this into account in our comparisons?