Best of the Best Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2020

Patient and carer perceptions of facilitators and barriers to early diagnosis and treatment of head and neck cancer in NSW: a qualitative study (#79)

Rebecca L Venchiarutti 1 2 , Lily Pho 3 , Jonathan R Clark 2 4 5 , Carsten E Palme 2 4 5 , Jane M Young 1 2 4
  1. Surgical Outcomes Research Centre (SOuRCe), Royal Prince Alfred Hospital, Camperdown, NSW, Australia
  2. Faculty of Medicine and Health, University of Sydney, Camperdown, NSW, Australia
  3. SLHD Nursing and Midwifery Executive Unit, Sydney Local Health District, Sydney, NSW, Australia
  4. RPA Institute of Academic Surgery, Sydney Local Health District, Camperdown, NSW, Australia
  5. Sydney Head and Neck Cancer Institute, Chris O'Brien Lifehouse, Camperdown, NSW, Australia

Aim:

In NSW, targets for timely diagnosis and treatment of head and neck cancer (HNC) are not yet being met, particularly for patients in regional areas. These delays may result in disease progression and significant distress for patients and carers. The study aim was to investigate patient and carer perceptions of facilitators and barriers to early diagnosis and treatment of HNC in NSW.

 

Methods:

Patients with HNC and their carers were purposively sampled from participants in a prospective cohort study investigating times to diagnosis and treatment of HNC. Interviews were conducted between April 2019-March 2020, transcribed verbatim, and analysed using content analysis. Data collection and analysis were underpinned by the Model of Pathways to Treatment.

 

Results:

Forty-four semi-structured interviews were conducted among 39 patients and 17 carers until data saturation. Help-seeking was mediated by the nature of symptoms, with bodily changes that were ‘not right’ prompting more urgent help-seeking compared to those that patients had previously experienced (eg gingivitis). Facilitators of timely diagnosis and treatment included a sense of urgency imparted on patients by health care professionals (HCPs), advocacy by the HCP or carer on the patients’ behalf, and leveraging ‘social capital’ by consulting friends or relatives who were HCPs. Distance to services, financial costs, and a perceived lack of emotional investment by HCPs acted as barriers to timely diagnosis and treatment. Participants often qualified their experiences of delays into ‘good’ and ‘bad’, which were acceptable and not-acceptable, respectively. Reasons for ‘good’ delays included complex surgical planning and difficult diagnoses, whereas ‘bad’ delays resulted from HCP or patient inaction in response to symptoms.

 

Conclusions:

The findings provide insight into the interacting nature of factors that facilitate and impede early HNC diagnosis and treatment, which may be used for patient and HCP awareness campaigns to improve adherence to optimal care guidelines.