From many voices, one question: Community co-design of a population-based qualitative cancer research study.

Purpose: This study formed the development stage of a population-based survey aiming to: (i) understand the needs and experiences of people affected by cancer in Queensland, Australia and (ii) recruit a pool of participants for ongoing cancer survivorship research. The current study aimed to co-design and test a single qualitative survey question and study invitation materials to maximise acceptability of, and participation in, the survey and future research.

Methods: Fifty-two community members, including cancer survivors and caregivers, participated across 15 co-design workshops and 20 pretest interviews.

Are exercise and sitting time during chemotherapy for ovarian cancer associated with treatment-related side-effects, chemotherapy completion and survival?

Objective: To evaluate if exercise and sitting time during chemotherapy were associated with chemotherapy side-effects, completion of planned chemotherapy and survival.

Methods: We used data from the Ovarian cancer Prognosis And Lifestyle (OPAL) Study, a national prospective cohort of adults with newly-diagnosed epithelial ovarian cancer. At 3-monthly questionnaires we asked about exercise and sitting time in the past week, and treatment-related side-effects.

Data sharing in cancer research: A qualitative study exploring community members' preferences.

Background: Advancements in cancer treatment and survivorship rely on participation in research and access to health records.

Methods: This study explored preferences for data access and sharing in 14 workshops with 42 community members, most of whom were a cancer survivor or carer. Various scenarios for data access and sharing were presented and discussed, with participants' preferences summarized using descriptive statistics.

Impact of disease recurrence on the supportive care needs of patients with ovarian cancer and their caregivers.

Objective: We aimed to explore the supportive care needs of ovarian cancer patients and their caregivers before and after the first cancer recurrence, the top unmet needs after recurrence, and the relationship between patient and caregiver needs at recurrence.

Methods: Participants were 288 patients and 140 caregivers from the Australian Ovarian Cancer Study-Quality of Life (AOCS-QoL) cohort. They completed Supportive Care Needs Surveys (patients: SCNS-SF34, caregivers: SCNS-P&C44) every three-to-six months for up to two years.

Pre-post feasibility trial of a telephone-delivered exercise intervention for patients during chemotherapy for recurrent ovarian cancer: the ECHO-R trial protocol.

Introduction: The benefits of exercise in reducing treatment-related morbidity and improving quality of life following a primary diagnosis of cancer have been well documented and have led to exercise being recommended by oncology societies for all people with a cancer diagnosis. However, these recommendations are derived from research typically involving cohorts with more common cancers and relatively good prognosis, such as breast and prostate. Evidence from these cancers may not apply to women with recurrent ovarian cancer.

The Unmet Needs of Pancreatic Cancer Carers Are Associated with Anxiety and Depression in Patients and Carers.

Pancreatic cancer has one of the lowest survival rates, and patients experience debilitating symptoms. Family carers provide essential daily care. This study determined the prevalence of and risk factors for unmet supportive care needs among carers for pancreatic cancer patients and examined which carer needs were associated with anxiety and depression in carers and patients.

Exercise during CHemotherapy for Ovarian cancer (ECHO) trial: design and implementation of a randomised controlled trial.

Introduction: Epidemiological evidence supports an association between higher levels of physical activity and improved cancer survival. Trial evidence is now needed to demonstrate the effect of exercise in a clinical setting. The xercise during emotherapy for varian cancer (ECHO) trial is a phase III, randomised controlled trial, designed to determine the effect of exercise on progression-free survival and physical well-being for patients receiving first-line chemotherapy for ovarian cancer.

Benefits of supportive strategies for carers of people with high-grade glioma: a systematic review : Strategies for addressing the needs of high-grade glioma carers.

Purpose: To systematically review and examine current evidence for the carer-reported benefits of supportive care strategies for carers of adults with high-grade glioma (HGG).

Methods: Four databases (CINAHL, EMBASE, PubMed, PsycINFO) were searched for articles published between January 2005 and April 2022 that assessed strategies for addressing the supportive care needs of carers of adults with HGG (WHO grade 3-4). Study selection and critical appraisal were conducted independently by three authors (DJ/MC, 2021; DJ/RJ 2022).

Evaluating patient-reported symptoms and late adverse effects following completion of first-line chemotherapy for ovarian cancer using the MOST (Measure of Ovarian Symptoms and Treatment concerns).

Objectives: Knowledge on the course of symptoms patients with ovarian cancer experience is limited. We documented the prevalence and trajectories of symptoms after first-line chemotherapy using the Measure of Ovarian Symptoms and Treatment concerns (MOST).

Methods: A total of 726 patients who received platinum-based chemotherapy for ovarian cancer were asked to complete the MOST every 3 months, beginning 6 months post-diagnosis and continuing for up to 4 years.

End-of-life care for Aboriginal and Torres Strait Islander people with cancer: an exploratory study of service utilisation and unmet supportive care needs.

Background: Indigenous Australians diagnosed with cancer have substantially higher cancer mortality rates compared with non-Indigenous Australians, yet there is a paucity of information about their end-of-life service utilisation and supportive care needs.

Purpose: To describe the service utilisation and supportive care needs of Aboriginal and Torres Strait Islander people with cancer at end-of-life.

Method: Hospital admission data were linked to self-reported data from a study of Indigenous cancer patients from Queensland, Australia during the last year of their life.

When will I feel normal again? Trajectories and predictors of persistent symptoms and poor wellbeing after primary chemotherapy for ovarian cancer.

Objectives: After treatment for ovarian cancer, women want to know when they will feel 'normal' again. Our objective was to document the proportions of women with high levels of physical and emotional symptoms at the end of treatment, determine if/when they return to normal and identify groups at risk of persistent symptoms/delayed recovery.

Methods: Women in the OPAL (Ovarian cancer Prognosis And Lifestyle) study who received ≥3 cycles of first-line chemotherapy and completed patient-reported outcome (PRO) questionnaires on or < 6 weeks after completing chemotherapy (baseline) were included in this analysis (n = 527).

Insomnia and its association with quality of life in women with ovarian cancer.

Objectives: Insomnia is common in women with ovarian cancer but there are limited prospective data on the frequency and degree of impact on patients. Our objective was to determine the prevalence of insomnia over the first three years after a diagnosis of ovarian cancer; and the relationship between insomnia and quality of life.

Methods: OPAL (Ovarian cancer, Prognosis And Lifestyle) is a prospective study of Australian women with epithelial ovarian cancer; 894 provided information on insomnia symptoms, medications and quality of life at three, six, nine, 12, 24 and 36 months after diagnosis.

Anxiety and depression after diagnosis of high-risk primary cutaneous melanoma: a 4-year longitudinal study.

Purpose: To quantify the prevalence of anxiety or depression (overall; melanoma-related) among people with high-risk primary melanoma, their related use of mental health services and medications, and factors associated with persistent new-onset symptoms across 4 years post-diagnosis.

Methods: A longitudinal study of 675 patients newly diagnosed with tumor-stage 1b-4b melanoma. Participants completed the Hospital Anxiety and Depression Scale and answered questions about fear of cancer recurrence, use of medication, and support, serially over 4 years.

Supporting patients and carers affected by pancreatic cancer: A feasibility study of a counselling intervention.

Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers.

Patterns of, and barriers to supportive care needs assessment and provision for Australian women with gynecological cancer and their caregivers: a mixed-methods study of clinical practice.

Objectives: To document the current clinical practice in 2017 for assessment of supportive care needs and provision of supportive care to women with gynecological cancer and their caregivers in Australia, and to identify the main enablers and barriers to care provision.

Methods: A total of 64 health professionals who care for Australian women with gynecological cancer responded to an electronic survey which explored their use of needs assessment, service-level processes and protocols for support service provision, and identified enablers and barriers to provision of care to both patients and caregivers. Eight respondents underwent an additional in-depth interview to elaborate on enablers, barriers, and gaps in the provision of supportive care.

Unmet supportive care needs among people with cancer: A cross-cultural comparison between Indigenous and Non-Indigenous Australians.

Objectives: This study describes and compares the unmet supportive care needs between Indigenous and Non-Indigenous people with cancer.

Methods: Data from two cross-sectional supportive care needs studies were matched in a 1:1 ratio for Indigenous (n = 125) and Non-Indigenous (n = 125) Australian adults diagnosed with cancer. Descriptive statistics were used to compare type and prevalence of 24 need items measured by the SCNS-SF34 and SCNAT-IP.

Risk of Melanoma Recurrence After Diagnosis of a High-Risk Primary Tumor.

Importance: With emerging new systemic treatments for metastatic melanoma, early detection of disease recurrence is increasingly important.

Objective: To investigate the risk of melanoma recurrence in patients with a localized melanoma at a high risk of metastasis.

Design, Setting, And Participants: A total of 1254 patients with newly diagnosed, histologically confirmed tumor category T1b to T4b melanoma in Queensland, Australia, were recruited prospectively between October 1, 2010, and October 1, 2014, for participation in a cohort study.

A systematic literature review of trials of survivorship interventions for women with gynaecological cancer and their caregivers.

Core components of survivorship care include treatment of late and long-term effects, care coordination, promotion of psychological well-being, health and addressing special populations' needs. Women affected by gynaecological cancer and their caregivers can experience disease-specific issues. This review presents an overview of survivorship interventions that have been trialled among this population.

Sun protection behavior after diagnosis of high-risk primary melanoma and risk of a subsequent primary.

Background: Melanoma survivors are at high risk of further primary melanomas.

Objective: To assess sun behavior after melanoma diagnosis and in relation to further primary melanomas.

Methods: We applied repeated measures latent class analysis to reported primary prevention behavior at time of diagnosis and every 6 months for 2 years after diagnosis in patients with clinical stage IB or II melanoma.

Coping strategies, trajectories, and their associations with patient-reported outcomes among women with ovarian cancer.

Objective: Most women with ovarian cancer present with advanced stage disease and face aggressive treatments, recurrence, and possible death, yet little is known about how they cope. Our objective was to identify coping strategies used by women with ovarian cancer and their trajectories of use after diagnosis and to assess if coping trajectories are associated with subsequent anxiety, depression, or quality of life.

Methods: Women with ovarian cancer completed questionnaires including the Brief-COPE, HADS, and FACT at 3, 6, and 9 months after diagnosis and the HADS and FACT at 12 months.

The Imperative for a Triumph-Over-Tragedy Story in Women's Accounts of Undergoing Chemotherapy for Ovarian Cancer.

We aimed to examine how women construct their experiences of chemotherapy treatment for ovarian cancer. Through semistructured interviews, we explored the accounts of 18 Australian women about their experiences within a broader cultural imperative-or discourse-to "think positively." By applying a critical realist lens to the analysis, we identified two discursive themes that shaped women's accounts.

Perceptions of care and patient-reported outcomes in people living with neuroendocrine tumours.

Background: Neuroendocrine tumours (NETs) are rare, and when metastatic NETs are incurable, the tumours are frequently slowly growing. Patients may be confronted with disease-specific problems and distinct issues when accessing health-care. We aimed to assess perceptions of care coordination, identify unmet needs, and examine if these varied by whether patients received specialist oncology care in a single hospital or shared between that and another hospital.

Chemotherapy in patients with unresected pancreatic cancer in Australia: A population-based study of uptake and survival.

Aim: Palliative chemotherapy improves symptom control and prolongs survival in patients with unresectable pancreatic cancer, but there is a paucity of data describing its use and effectiveness in everyday practice. We explored patterns of chemotherapy use in patients with unresected pancreatic cancer in Australia and the impact of use on survival.

Methods: We reviewed the medical records of residents of New South Wales or Queensland, Australia, diagnosed with unresectable pancreatic adenocarcinoma between July 2009 and June 2011.