Participants will receive a structured telephone interview and a self-administered questionnaire (SAQ) at 4 to 6 months (Time 1) and at 18 months (Time 2) post diagnosis. Information collected will include socio-demographics, self-reported diagnostic and treatment information, medical information, attitudes to help seeking, utilisation and availability of psychosocial and supportive care, psychological distress and quality of life.
Socio-demographics will include education, marital status, occupation, private health insurance, gross household income (pre and post diagnosis), number of dependent children at home and Indigenous status.
Medical history will include family history of breast cancer, birth weight, age at menarche, menopausal status, parity, history of breastfeeding, use of oral contraceptives and hormone replacement therapy (HRT), complementary therapies, current weight, pre-diagnosis weight, pre-existing medical conditions, smoking, and alcohol consumption and levels of physical activity.
Pathways to diagnosis will include history of mammography (through public and private facilities), symptoms and date of first recognition of abnormality (for symptom detected), date of mammography (for screen detected), date and outcomes of first appointment with doctor, date and outcomes of any subsequent appointments up to the date of diagnosis, methods of transport and time taken to attend diagnostic tests, satisfaction with the process of diagnosis (including perceived delays, reasons for delays).
Treatment pathways will include treatment types and corresponding dates, location of treatment facility, time taken and method of transport to attend treatments, satisfaction with medical care and health system, reasons for treatment choices, perceived degree of control over choices and barriers from the patient's perspective.
Psychosocial outcomes will be assessed using a number of previously validated instruments including the
Attitudes to Seeking Help after Cancer (ASHCa) a 20 item scale that assesses positive and negative attitudes to seeking emotional or psychological support after cancer and behavioural intention to seek support [
31,
52].
The Supportive Care Needs Survey Short Form 34 (SCNS-SF34) a 34-item survey assessing cancer patients' need for help over the last month across 5 domains: psychological, health systems and information, patient care and support, physical and daily living, and sexuality needs. It has well demonstrated reliability and validity in cancer populations [
53].
Perceptions of control over treatment choices will be assessed using questions developed by Street and Voigt [
54] and Jansen et al. [
55]
The Brief Symptom Inventory - 18 (BSI-18) will be used to assess psychological distress through three subscales of anxiety, depression, and somatisation. This scale has been well validated in oncology settings and has also been validated with non-clinical populations in the community [
56]. Finally,
Quality of Life will be assessed using the FACT-B, which has good reliability and validity and has been used in rural patients and among breast cancer survivors in Australia [
57,
58]. The FACT-B assesses physical, social, emotional and functional well-being.
Queensland Cancer Registry Data
Information obtained from the QCR will include date of birth, address at diagnosis, treating physician's name and contact details, date of diagnosis, tumour site, morphology, histological grade, stage, degree of lymph node involvement, oestrogen and progesterone status. Indigenous status will also be collected from QCR records and will be cross-checked against information provided by the participant during the telephone-based interview.
Medical record data
At 12 months after diagnosis, information on diagnosis and treatment including diagnostic tests, presenting symptoms, type and date of surgical procedures, post-operative complications and other therapy (radiation, cytotoxic or hormonal therapy), including start and completion dates will be extracted from clinician and hospital records. Information on indicators of illness status and disease progression including stage, tumour site, maximum tumour diameter, lymph node status, presence of distant metastases and other prognostic indicators will also be obtained. Mammographic history (including dates, location and results) will be obtained from the relevant public or private breast screening services.
Long-term follow-up of participants
Using the QCR, other Australian state and territory cancer registries, and Australia's National Death Index, participants will be followed for a total of five years from their date of diagnosis for breast cancer recurrence, diagnosis of other primary cancers, and death (classified as breast cancer, other cancer or non-cancer death).