Title: Exploring the role of health literacy in the diagnosis of head and neck cancer
Funder: Department of Health and Social Care

Abstract: Research Question: Does patient health literacy influence the diagnosis of head and neck cancers (HNC)? Background: HNCs occur in the mouth, pharynx and larynx. Stage at diagnosis is a major determinant of cancer survival. Consequently, cancer early diagnosis is a top priority for NHS England. However, in the UK, 6 in every 10 HNCs are already advanced at diagnosis. Advanced HNCs require more complex multi-modal treatments and have high NHS costs. Patients with advanced HNC commonly experience treatment-related side-effects which worsen quality-of-life (e.g. disfigurement, difficulties with breathing, swallowing and speech). They also have shorter survival. The &ldquo;diagnostic interval&rdquo; (time between a symptom first appearing and a patient being diagnosed) is long for HNC compared to other cancers. To achieve earlier diagnosis of HNCs, there is a need to understand what influences the diagnostic interval. Health literacy is the extent to which a person has the capacity, knowledge, understanding and confidence to access, understand, evaluate, use and engage with health care information and services. Suboptimal health literacy is associated with unhealthy lifestyle behaviours, ill health, less use of preventive health services and premature death. However, health literacy can be built, and effective interventions exist. Moreover, health services can be reshaped to better accommodate differing health literacy levels. A few studies in other cancers and countries suggest patient health literacy has potential to influence the diagnostic interval. However, this has not previously been investigated in HNC. Aim: To explore the role of health literacy in the HNC diagnostic interval, to provide a foundation for the development of a health literacy-based HNC early diagnosis intervention. Methods: Phase 1 will involve secondary analysis of qualitative data from two sets of semi-structured interviews we have already conducted with HNC patients. We will use thematic analyses within a Framework approach to explore whether health literacy influenced: how patients recognised and judged symptoms, made decisions around help-seeking and negotiated health services to seek help; and patients interactions with healthcare services and professionals. Phase 2 will involve identification of relevant components and characteristics of cancer early diagnosis interventions. We will (1) conduct a systematic review of published health literacy interventions relevant to cancer diagnosis and (2) identify and assess &ldquo;real world&rdquo; HNC early diagnosis campaigns from a health literacy perspective. Phase 3 will use co-design approaches to begin to design a HNC early diagnosis intervention that takes account of health literacy. We will hold workshops with (a) HNC patients and carers; (b) members of the public at risk of HNC; and (c) health professionals and other stakeholders. The outputs will be a refined logic model and potential areas for future intervention development. PPI: PPI will be integral throughout the project. Dissemination: Findings will be disseminated to patient groups, health professionals, researchers, and commissioners, through conference presentations, journal papers, newsletters, plain English summaries and a podcast. We will draft a grant application to develop and test the intervention. Anticipated Impact: Long-term this study has potential to achieve earlier diagnosis of HNC, thereby improving patient survival and reducing NHS costs.

Lay abstract: Head and neck cancers (HNC) occur in the mouth, jaw, throat and voice-box. Diagnosing cancer early is a top priority for the NHS. However, in the UK, 6 in every 10 HNCs are already advanced at diagnosis. Patients with advanced HNC require more complex treatments, experience more treatment side-effects that affect quality-of-life (e.g. disfigurement, swallowing and speech problems) and have shorter survival. These cancers are also more costly for the NHS to manage. The time between a symptom first appearing and a patient being diagnosed is long for HNC patients. To diagnose HNC earlier, we need to understand what influences this. Some people have poor health literacy: that is, they lack capacity, knowledge, understanding and confidence to access, understand, and engage with health information and services. Poor health literacy is associated with unhealthy lifestyles, ill health, and premature death. However, there are &ldquo;interventions&rdquo; (programmes) which have improved people s health literacy and their outcomes. In addition, health services can be changed to better meet people s health literacy levels. Studies in other cancers (and other countries) suggest that health literacy might influence delays in cancer diagnosis. Our study will investigate &ndash; for the first time - whether patient health literacy influences delays in HNC diagnosis. We will use it as a basis to develop, in the future, a programme to encourage HNC early diagnosis which takes account of health literacy. In Phase 1, we will re-analyse data from two previous studies in which we interviewed 39 HNC patients. We will explore whether health literacy influenced how patients (i) recognised and judged symptoms; (ii) made decisions around seeking help, and (iii) interacted with GPs and dentists. In Phase 2, we will identify and bring together (i) previous studies of health literacy programme relevant to cancer diagnosis and (ii) previous campaigns to promote HNC early diagnosis. We will examine, in detail, what these programmes/campaigns involved and (if relevant) whether the intervention worked. In Phase 3, we will hold three workshops with (i) HNC patients and carers; (ii) members of the public at higher risk of HNC; and (iii) professionals involved in HNC. These workshops will discuss the Phase 1 & 2 results and start working together to design a HNC early diagnosis programme, that takes account of health literacy. A HNC Patient Advisory Group will provide advice and support throughout the project. We will distribute our results to patient groups, health professionals, researchers, and health service managers, through conference presentations, journal papers, plain English summaries and a podcast. We will apply for funding to develop and test the intervention in the future. Long-term this study could help achieve earlier diagnosis of HNC which will improve patient survival and reduce costs to the NHS.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: CANCER AND NEOPLASMS