Eligible respondents were adults aged ≥18 years who currently have, or previously have had, a confirmed diagnosis of haematological cancer and had sufficient English language skills to participate without an interpreter.
Respondents volunteered their participation in response to a study advertisement distributed via email and/or social media platforms by established national community groups (Leukaemia Foundation), professional member societies and working groups (Victorian COVID-19 Cancer Network), and clinical trial groups (Australasian Leukaemia & Lymphoma Group). Potential respondents were provided a link to an online information sheet, consent form, and survey. The study protocol was approved by the University of Melbourne Human Research Ethics Committee (Ref: 2057125.1).
An online cross-sectional survey was conducted from 22 July to 19 August 2020 and was used to collect the following information.
Demographic characteristics: Data on age, gender, postcode, marital status, education level, employment status, and number of dependants living in the home during the COVID-19 pandemic were collected. Residential postcode was used to classify respondents’ location (Major cities/Inner regional/Outer regional/Remote/Very remote) as per the Australian Bureau of Statistics Australian Statistical Geography Standard (ASGS) .
Medical characteristics: Information regarding respondents’ primary diagnosis, date of diagnosis, treatment, disease status, pre-existing health conditions, and type of hospital managing respondents’ care was collected.
Cancer care experience: Four questions were designed by the research team to better understand the care experiences of respondents during the pandemic (see Table 1). Questions explored opportunities for family support, access to care, perceived adequacy of access to support, and ability to maintain contact with the health care team.
Financial concerns: Two items were designed to explore respondents’ financial wellbeing during the pandemic, including whether they had lost income due to lockdown measures (Table 1).
Perceived risk and impact of COVID-19 on cancer management: Five questions were designed to investigate respondents’ concerns about the impact of COVID-19 on their own health and their perceived risk of contracting COVID-19 (Table 1).
Psychological distress: Psychological distress was measured using the Kessler 10-item assessment (K10) . Respondents indicated the extent to which they experienced each emotional state since the beginning of the pandemic using a 5-point Likert scale ranging from 1 (“None of the time”) to 5 (“All the time”). Cronbach’s alpha in this sample was 0.92, indicating a high level of internal consistency. Scores were divided into three categories representing mild (range 20-24), moderate (range 25-29), and severe psychological distress (range 30-50).
Unmet supportive care needs: Respondents’ perceived needs during COVID-19 were captured by the subdomains Health system and Information needs (11 items) and Patient care and Support needs (5 items) of the short-form Supportive Care Needs Survey (SCNS-SF34) . The SCNS-SF34 had excellent internal consistency in this specific sample (Cronbach's α = 0.97). The SCNS-SF34 uses a 5-point scale to measure unmet need: 1 = No need – not applicable, 2 = No need – satisfied, 3 = Low need, 4 = Moderate need, and 5 = High need. In line with previous research , responses 1 and 2 were re-coded as 0 (“No need”) and subsequent categories were re-scored accordingly 1 (“Low need”), 2 (“Moderate need”), and 3 (“High need”).
Fear of cancer recurrence (FCR): Respondents who had completed treatment and were in remission were asked to complete the 9-item Severity subscale of the Fear of Cancer Recurrence Inventory (FCRI) . This subscale evaluates the severity of intrusive thoughts associated with respondents’ fears about the possibility that cancer could return or progress on a 5-point Likert scale ranging from 1 (“Not at all”) to 5 (“A great deal”). The accepted cut-off score for clinical FCR is 13. The FCRI had acceptable internal consistency in this sample (Cronbach's α = 0.77).
Survey data were collected in Qualtrics and de-identified prior to being exported to SPSS (V26.0, IBM SPSS) for analysis. Descriptive statistics (e.g., frequencies, means, and standard deviations) were calculated. Univariate linear regressions were conducted to identify potential correlates of psychological distress, unmet supportive care needs, and FCR. All variables significant at p < 0.05 were subsequently included in multiple linear regression models to determine their relative contribution to each of the dependent variables. Moderation analyses were carried out to further identify high risk groups and explored the effects of gender (1 = men, 2 = women), location (1 = major cities, 2 = regional), age (treated as continuous), marital status (1 = single, 2 = married/defacto), education (1 = < tertiary, 2 = tertiary), and employment status (1 = employed, 2 = unemployed).