ABSTRACT
OBJECTIVE: Amid the COVID-19 pandemic, healthcare providers (HCPs) of hematology patients face unique challenges due to the vulnerability of their patients. This study explores the lived experiences of these providers during and beyond the crisis. METHODS: Twenty-one Australian HCPs caring for hematology patients completed semi-structured interviews exploring their experiences and needs during the COVID-19 pandemic, adequacy of support and information provided by healthcare organizations, impact on hematology patients, and the benefits and challenges of telehealth care. Data were analyzed using reflexive thematic analysis. RESULTS: Four themes were identified: (1) Managing an initial state of flux (unsettling uncertainty and fear, unique needs of hematology patients, getting on with the job together); (2) Concerns about care provision (questioning care efficacy, burden of compassion); (3) Disconnect between HCP needs and system-level responses (burnout, isolation, and poor work-life balance, broadcast fatigue, protecting mental health), and; (4) Reflecting on the future (ongoing challenges for hematology patients, higher staff turnover and heavier workloads, innovation in the healthcare field). CONCLUSION: This study sheds light on the challenges that hematology HCPs face during and beyond the COVID-19 crisis, impacting their wellbeing. Addressing these challenges is paramount for the healthcare system at large. Provider-led peer support programs may be beneficial for addressing moral distress and building resilience. Additionally, specific consideration for the ongoing vulnerability of hematology patients could have positive impacts on providers' professional satisfaction.
Subject(s)
COVID-19 , Humans , Australia , COVID-19/epidemiology , Pandemics , Qualitative Research , Health PersonnelABSTRACT
The Virtual Opinions poll Independent Centered on CLL patients' Experience (VOICE) evaluated patients' knowledge about chronic lymphocytic leukemia (CLL), their perspectives on diagnosis and treatment, and their unmet needs. Clinicians and patient advocacy group representatives developed and distributed the survey from March through December 2022 in 12 countries, and 377 patients with ≥1 line of previous CLL treatment responded from Europe, Latin America, the United States, Australia, Egypt, and Turkey. A majority of them (90%; 336/374) relied on their physicians for information regarding CLL and treatment. If at high risk, respondents prefer oral medications to intravenous (78%; 232/296), fixed duration treatment over treatment until progression (69%; 185/270), outpatient over inpatient treatments (91%; 257/283). Over three-fourths of respondents (78%; 286/368) wanted to be involved in treatment decisions, but a minority actually participated (44%; 138/313). COVID-19 vaccinations were widely available (97%; 273/281), but one-fifth (19%; 63/331) were unaware that CLL increases vulnerability to infections. Most patients' physicians explained their treatment options (84%; 297/355), and 90% (271/301) understood their treatment. Notably, >10% would continue treatment normally if they experienced cardiac problems or arrhythmias, whereas 23% would consider stopping treatment if they developed skin cancer. Treatment-associated side effects affected 27% to 43% of patients. These results in a global patient population highlight gaps in patients' knowledge of risk groups, their susceptibility to infections including COVID, and the side effects of common treatments. Such knowledge can guide the appropriate targeting of patient education initiatives by clinicians, advocates, and policymakers.
Subject(s)
Leukemia, Lymphocytic, Chronic, B-Cell , Physicians , Humans , United States , Leukemia, Lymphocytic, Chronic, B-Cell/therapy , Leukemia, Lymphocytic, Chronic, B-Cell/drug therapy , Outpatients , Duration of Therapy , Australia/epidemiologyABSTRACT
Background: There is a paucity of research examining the effects of the COVID-19 pandemic on the healthy lifestyle behaviors of hematological cancer patients. We examined changes in healthy lifestyle behaviors since the pandemic and identified factors associated with these changes among members of this high-risk population. Methods: Hematological cancer patients (n = 394) completed a self-report online survey from July to August 2020. The survey assessed pandemic-related changes in exercise, alcohol consumption, and consumption of fruit, vegetables, and wholegrains. Information relating to several demographic, clinical, and psychological factors was also collected. Factors associated with changes in healthy lifestyle behaviors were analyzed using logistic regression. Results: Just 14% of patients surveyed reported exercising more during the pandemic (39% exercised less). Only a quarter (24%) improved their diet, while nearly half (45%) reported eating less fruit, vegetables, and wholegrains. Just over a quarter (28%) consumed less alcohol (17% consumed more alcohol). Fear of contracting COVID-19 and psychological distress were significantly associated with reduced exercise. Younger age was significantly associated with both increased alcohol consumption and increased exercise. Being a woman was significantly associated with unfavorable changes in diet and being married was significantly associated with decreased alcohol consumption. Conclusion: A substantial proportion of hematological cancer patients reported unfavorable changes in healthy lifestyle behaviors during the pandemic. Results highlight the importance of supporting healthy lifestyle practices among this particularly vulnerable group to ensure health is optimized while undergoing treatment and when in remission, particularly during crisis times like the COVID-19 pandemic.
ABSTRACT
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 Leukemia Foundation of Australia, and clinicians in Australia with membership to the Hematology Society of Australia and New Zealand. Results: Five hundred nine (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.
Subject(s)
Hematologic Neoplasms , Terminal Care , Cross-Sectional Studies , Death , Hematologic Neoplasms/therapy , Humans , Middle Aged , Patient PreferenceABSTRACT
Hematology patients are more vulnerable to the effects of COVID-19 than patients with other cancers. We surveyed hematology patients to better understand their experiences of cancer care during the pandemic. A large reduction was observed in the number of healthcare services accessed by respondents. Telehealth assisted with access but requires improvement.
Subject(s)
COVID-19 , Hematology , Telemedicine , COVID-19/epidemiology , Cross-Sectional Studies , Humans , PandemicsABSTRACT
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.
Subject(s)
COVID-19 , Hematologic Neoplasms , Australia/epidemiology , COVID-19/epidemiology , Hematologic Neoplasms/therapy , Humans , Pandemics , SARS-CoV-2ABSTRACT
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.
Subject(s)
COVID-19 , Hematologic Neoplasms , Neoplasms , Psychological Distress , Cross-Sectional Studies , Fear , Female , Hematologic Neoplasms/epidemiology , Hematologic Neoplasms/therapy , Humans , Neoplasms/epidemiology , Neoplasms/therapy , Pandemics , Prevalence , SARS-CoV-2 , Stress, Psychological/epidemiology , Surveys and QuestionnairesABSTRACT
OBJECTIVE: This study aims to determine whether residents are influenced by clinical information when interpreting microscopic urinalysis (UA) and estimating the probability of a urinary tract infection (UTI), and to determine the accuracy and reliability of UA readings. DESIGN: Residents estimated the UA white blood cell count and the probability of a UTI in vignettes using a fractional factorial design, varying symptoms, gender, and the white blood cell count on preprepared urine slides. RESULTS: Individual-level results indicated a clinical information bias and poor accuracy. Seventeen of 38 residents increased the white blood cell count in response to female gender; 14 increased the white blood cell count in response to UTI symptoms. Forty-nine percent of the readings were inaccurate; agreement ranged from 50% to 67% for white and red blood cells and bacteria. CONCLUSION: Many residents gave inaccurate UA readings, and many readings varied with clinical information. A significant portion of residents needs assistance in objectively and accurately interpreting the UA.