Background The COVID-19 pandemic has had a disruptive effect on people with haematological cancers, who represent a high-risk population due to the nature of their disease and immunosuppressive treatments. We aimed to identify the psychological impacts of the COVID-19 pandemic on haematology patients and identify correlated factors to inform the development of appropriate supportive interventions. Methods Three hundred and ninety-four respondents volunteered their participation in response to a study advertisement distributed online through established haematology groups. Participants completed a self-report online survey exploring wellbeing, psychological distress, unmet supportive care needs, and fear of cancer recurrence. Results At least 1 in 3 respondents (35%) reported clinical levels of distress and nearly 1 in 3 (32%) identified at least one unmet need. Among respondents in remission (n = 134), clinical fear of cancer recurrence was reported by nearly all (95%). Unmet needs, pre-existing health conditions, younger age, financial concerns, and perceived risk of contracting COVID-19 were the dominant factors contributing to psychological distress during the pandemic. Psychological distress, lost income, perceived inadequate support from care team, perceived risk of contracting COVID-19, and being a woman were significantly associated with unmet needs. Psychological distress and concern about the impact of COVID-19 on cancer management were significantly associated with fear of cancer recurrence among respondents in remission. Conclusion Results highlight the high psychological burden and unmet needs experienced by people with haematological cancers during the COVID-19 pandemic and indicate a need for innovative solutions to rapidly identify distress and unmet needs during, and beyond, pandemic times.

Objective Haematological cancer patients are particularly vulnerable to the effects of COVID‐19. In addition to being immunocompromised, pandemic‐related travel restrictions have impacted access to treatments and overseas stem cell donations for patients requiring transplantation. Given this vulnerability, people with haematological cancers are at risk of experiencing heightened distress during the pandemic. This study aimed to explore haematological cancer patients' experiences and needs. Methods Twenty‐four Australian haematological cancer patients completed semi‐structured interviews exploring their concerns and worries during the pandemic, impact of pandemic on management of disease, access to information and support, lifestyle changes, and attitudes towards emerging models of healthcare during the pandemic. Interview transcripts were thematically analysed. Results Four themes reflecting the experiences of haematological cancer patients during the pandemic were identified: ‘Fears about contracting COVID‐19' (behaviour changes to protect health, impact on daily routine and habits, annoyance at dismissive attitude of others toward COVID‐19); ‘Reduced sense of connection and support’ (reduced social support and access to external support services); ‘New challenges’ (increased financial hardship, worsened health), and; ‘Underlying system and communication issues' (access to trusted information, satisfaction/dissatisfaction with care, navigating telehealth). Participants expressed a need for improved access to support services and trusted information. Conclusions The findings emphasise the additional challenges experienced by haematological cancer patients during the COVID‐19 pandemic and their impact on daily life. Results point to the importance of validation of increased distress during periods of uncertainty; reinforcing recommendations about high‐quality sources of information; and facilitating access to support services when face‐to‐face care is limited.

Background The COVID-19 pandemic has had a disruptive effect on people with haematological cancers, who represent a high-risk population due to the nature of their disease and immunosuppressive treatments. We aimed to identify the psychological impacts of the COVID-19 pandemic on haematology patients and identify correlated factors to inform the development of appropriate supportive interventions.Methods 394 respondents volunteered their participation in response to a study advertisement distributed online through established haematology groups. Participants completed a self-report online survey exploring well-being, psychological distress, unmet supportive care needs, and fear of cancer recurrence.Results At least 1 in 3 respondents (35%) reported clinical levels of distress and nearly 1 in 3 (32%) identified at least one unmet need. Among respondents in remission (n = 134), clinical fear of cancer recurrence was reported by nearly all (95%). Unmet needs, pre-existing health conditions, younger age, financial concerns, and perceived risk of contracting COVID-19 were the dominant factors contributing to psychological distress during the pandemic. Psychological distress, lost income, perceived inadequate support from care team, perceived risk of contracting COVID-19, and being a woman were significantly associated with unmet needs. Psychological distress and concern about the impact of COVID-19 on cancer management were significantly associated with fear of cancer recurrence among respondents in remission.Conclusion Results highlight the high psychological burden and unmet needs experienced by people with haematological cancers during the COVID-19 pandemic and indicate a need for innovative solutions to rapidly identify distress and unmet needs during, and beyond, pandemic times.

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Background: People with hematological malignancies can deteriorate rapidly to a terminal event and have variable levels of engagement when transitioning to palliative and end-of-life care. Objectives: To describe end-of-life care values and preferences of people with hematological malignancies and explore whether these align with hematology clinicians' perceptions. Design: Two matched anonymous quantitative cross-sectional surveys explored: 1) patients' values and preferences around manner and timing of discussions regarding life expectancy and prognosis, involvement in decision making, and concurrent integration of palliative care with active treatment; and 2) clinicians' perceptions of their patients' values and preferences in relation to prognostic information. Settings/participants: Concurrent online national surveys of people with hematological malignancies known to the Leukaemia foundation of Australia, and clinicians in Australia with membership to the Hematology Society of Australia and New Zealand. Results: 509 (38% response rate) patients (median age 64 [min 20, max 89, interquartile range 56-70]) and 272 clinicians (21% response rate) responded to the survey. If their health was deteriorating, most patients wanted honest prognostic and life expectancy information (87%); welcomed involvement in decision-making (94%); felt they would be comfortable talking to the treating team about the possibility of death (86%); and would be comfortable seeing someone from a specialist palliative care team (74%). Clinicians generally underestimated most of these responses. Conclusion: Although our findings indicate that most people believe they would be comfortable discussing prognosis, life-expectancy, and wishes at the end of life, clinicians were largely unaware of their preferences. This highlights the need to embed values clarification in routine care for each patient and family.

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