HEADSpAcE Study: Healthcare Systems Analysis
Research type
Research Study
Full title
Translational studies of HEAD and neck cancer in South America and Europe - HEADSpAcE: Healthcare systems factors in late stage diagnosis of Head and Neck Cancer in Glasgow.
IRAS ID
287770
Contact name
Grant Creaney
Contact email
Sponsor organisation
NHS Greater Glasgow and Clyde
Clinicaltrials.gov Identifier
EUGN18OD545, HEADSpAcE Cohort
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
Summary of Research
Head and Neck Cancer (HNC) is a term used to define a range of tumours arising in the oral cavity, throat and larynx. The mortality and morbidity associated with these cancers is high and their treatment severely impacts quality of life. HNC rates are either static or rising across the globe.One of the biggest factors in poor survival rates and impact on quality of life is the presentation and diagnosis of HNC at a late stage, meaning larger tumour size, nodal involvement and or metastatic spread. As many as two thirds of HNC in the UK is diagnosed at late stage. This is likely to be associated with many factors which could be grouped by patient, tumour, or healthcare service related. This study aims to identify the factors pertaining to the healthcare system that cause delay in diagnosis through a mainly qualitative, mixed-methods study.
Data will be collected through semi-structured in depth interviews with key stakeholders in the HNC pathway, including patients, clinical staff and policy makers. This will be undertaken in hospital settings in Glasgow, UK. A healthcare systems questionnaire regarding the HNC diagnostic pathway will also be undertaken.
The interviews are being replicated in Montevideo, Uruguay and the questionnaire completed by a further 13 centres across Europe and South America as part of the overall HEADSpAcE project. These data will be analysed through mixed methodologies and will be used in conjunction with other data collected within HEADSpAcE to work towards improving rates of HNC diagnosed as early stage and reduce the burden of this debilitating disease.
Other studies in the overall HEADSpAcE project have/will apply for their own local permissions and this IRAS application is for Glasgow only.
Summary of Results
This report is written in advance of full peer-reviewed publication of the full-finalised results from the above study. It provides an overview of the study and a summary of key results. It is also an opportunity to formally express in writing the sincere thanks and gratitude the research team have towards every participant who generously consented to and gave their precious time towards this study. The candour of participants is the primary reason as to why this study was able to be completed and we will be forever grateful to each participant. We will endeavour to ensure that your contributions to this study are fully shared and utilised in the way they deserve.Who carried out the research? (including details of sponsor, funding and any competing interests)
The study was led by researchers from the University of Glasgow, primarily by Mr Grant Creaney under the supervision of Professor David Conway, alongside international colleagues from the Hospital de Clinicas - Universidad de la República, Montevideo, Uruguay, and is guided by the International Agency for Research on Cancer, which is based in Lyon, France. This study forms part of the wider HEADSpAcE research consortium. The research was funded by EU Horizon 2020 (Grant agreement number 825771)
Where and when the study took place
The study took place from Early 2022 to Late 2023 across Montevideo and Glasgow with participants being interviewed either online via ZOOM or in person at a convenient local location. 17 Interviews were completed in Glasgow. A total of 29 interviews were completed across both locations. Only the research team in Glasgow had access to the data collected in Glasgow.
Why was the research needed?
The majority of people in South America and Europe who are diagnosed with head and neck cancer are diagnosed with advanced stage disease. This study aimed to try and understand some of the reasons why this is the case.
What were the main questions studied?
The main research question was: for people who develop head and neck cancer, what aspects of health systems may contribute to, or prevent, a diagnosis of advanced stage disease?
Who participated in the study?
29 people participated in this study. Each participant completed a one-to-one interview with a researcher which lasted around one hour in length. Participants were from two main groups of people: patients with diagnosed head and neck cancer and healthcare workers involved in the care of people with head and neck cancer.
What happened during the study?
Each participant took part in a one-to-one interview which was audio recorded. The interview focussed on questions to do with systems in place for head and neck cancer diagnosis and the participants respective experiences of these. A transcript of each interview was produced which was then analysed by the research team so that strong, common themes in the answers from participants could be formed.
What were the results of the study?
The results showed several areas in which health systems may affect the stage at diagnosis of head and neck cancers in Glasgow and Montevideo. These included the ability of people who have concerns about a symptom to access appropriate healthcare in a timely manner. Additionally, the roles of clinic location, travel distances, and financial costs in how people access healthcare were key in getting people diagnosed with early-stage cancer. A further strong theme was the complicated pathways that exist between the different types of healthcare (primary care and secondary care), and a lack of clarity of who governs the referral processes may also contribute to advanced stage head and neck cancer diagnosis.
How has this study helped patients and researchers?
This study has revealed some key areas of the health system that may contribute to a diagnosis of advanced head and neck cancer which will be included in future studies in will complement other studies within the HEADSpAcE group. Ultimately, the results from this study will also contribute towards recommendations for how head and neck cancer systems could be designed to promote earlier diagnosis.
Details of any further research planned
There are several other studies that are being undertaken as part of HEADSpAcE that are due to report in the coming years. These include a large study of patients from across Europe and South America looking into the pathways to diagnosis and different factors that may affect stage at diagnosis, including behaviours and life circumstances. There are also other studies looking at the role of an individual’s genetics and bacteria in the mouth.
Where can I learn more about this study?
Results from this and other HEADSpAcE studies will be available once they are completed on the HEADSpAcE website at https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fheadspace.iarc.fr%252F%2FNBTI%2FL5u6AQ%2FAQ%2F12215da9-4bd7-406b-b0a8-40c93be57e5b%2F1%2FVzhttJsY52&data=05%7C02%7Capprovals%40hra.nhs.uk%7Ca3100ec0c72d4ca0fbe208dd316e2aab%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638721071430199649%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=fxKmcCrR%2FF9%2FyHQSLoFEuM28qyxt%2BMu0T2Cqr2BHc0o%3D&reserved=0
REC name
West of Scotland REC 3
REC reference
21/WS/0038
Date of REC Opinion
31 Mar 2021
REC opinion
Favourable Opinion