None listed
Conditions
Brief summary
Compared with non-Maori, Maori and Pasifika wahine have a higher incidence and mortality from gynaecological cancer in Aotearoa NZ. Of particular concern, the incidence of endometrial cancer in young women in Aotearoa NZ is increasing faster than anywhere else in the world and the greatest burden of this lies in Maori and Pasifika wahine. Inequities can occur at any stage along the pathway from health to gynaecological cancer and also between different ethnicities and geographical regions. This research study will identify the cultural, geographical, and timeline inequities in the journey from health to gynaecological cancer across all of Aotearoa NZ. Through investigation of health data and interviews with wahine newly-diagnosed with gynaecological cancer, we will document the ethnicity, timetable, and geographical location, of presentations to health care services, clinical investigations, stage and disease burden at diagnosis, and consider barriers to accessing health care or investigations.
Interventions
The study will use a descriptive mixed-methods analysis to document the journey of a cohort of people with a newly-diagnosed ovarian, cervical, endometrial, or vulval cancer including their location, timeline of health touch points, and individual stories, told in their own language in a cultural context.
All eligible tangata will be approached by a trained research nurse at the time of their diagnosis (in person, if possible, or by other method such as phone or virtual meeting, if not possibl
The study will use a descriptive mixed-methods analysis to document the journey of a cohort of people with a newly-diagnosed ovarian, cervical, endometrial, or vulval cancer including their location, timeline of health touch points, and individual stories, told in their own language in a cultural context. All eligible tangata will be approached by a trained research nurse at the time of their diagnosis (in person, if possible, or by other method such as phone or virtual meeting, if not possible), to obtain consent to access clinical data and separate consent to potentially take part in a future interview. 525 people will be recruited over 12 months including 85 Maori, 85 Pasifika, and 85 rural people. A real-time audit of clinical notes (from primary, secondary, and tertiary care) will be undertaken by a researcher or research nurse. Clinical notes will be used to create a timeline and description of clinical appointments related to their cancer investigation, diagnosis, and treatment. After completion of study recruitment and analysis of quantitative clinical data, purposive maximum variation sampling will be used to identify 20–30 study participants to undertake a one-off, one-to-one, semi-structured interview of up to 60 minutes duration. The group to be interviewed will include at least 6 Maori, 6 Pacific, and 6 people with remote or low urban accessibility, and selection will be guided by the findings of the quantitative clinical data. People will only be approached (by a trained culturally appropriate researcher or research nurse) if, at time of recruitment, they had provided separate consent to take part in a future interview. A trained culturally appropriate researcher or research nurse will undertake the semi-structured interviews.
Sponsors
University of Otago
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
A new diagnosis of ovarian, cervical, vulval, or endometrial cancer
Exclusion criteria
Unwilling or unable to provide informed consent (e.g., due to being too unwell to provide informed consent).
Outcome results
None listed