Search

A cancer diagnosis can have significant financial impacts for patients, often resulting from unexpected out‐of‐pocket expenses and a reduced capacity to work. These financial implications have been well characterised quantitatively in common cancers. However, less is known about the lived experience of financial stress, particularly outside the United States and in rarer cancers. This study aimed to explore the perceived financial impact of acute myeloid leukaemia (AML)—a rare haematological malignancy where patients may be particularly vulnerable to financial stress due to the lengthy, specialised and centralised care. The findings provide insight into the patients' lived experience of the personal financial impact of the disease. This Australian qualitative study was undertaken with 11 adults in remission from AML and recruited from their treating hospital. Semi‐structured interviews were transcribed, and data were managed using NVivo. Themes were identified through inductive and deductive analysis using open, axial and thematic coding. Four themes were identified: burden of AML‐attributable costs (e.g. out‐of‐pocket parking and medication expenses); accommodating the AML‐impact on paid work (e.g. early retirement and modifying job tasks); the consequence of financial strain from AML (e.g. using savings and accessing Government welfare) and concerns about the future and future familial financial burden (e.g. securing finances and worry about depleting financial resources). A reduction in or stopping work was perceived as the most burdensome to their current and future finances. The findings demonstrate people with AML experience financial difficulty even within a publically funded healthcare system. Opportunities exist for health services to alleviate some financial burden through reducing or abolishing parking fees for oncology patients and ensuring adequate access to social workers to facilitate access to Government welfare. Improving patients' financial difficulties contributes to improved quality of life, which is congruent to cancer survivorship. [ABSTRACT FROM AUTHOR]

Background: Type 1 diabetes (T1D) is a chronic, autoimmune disease where the pancreas does not produce enough insulin. T1D requires ongoing management across the lifespan through insulin regulation, monitoring of blood glucose levels, and adherence to strict diet and exercise plans. The most recent National Diabetes Services Scheme Australian Diabetes Map indicates that 129 210 Australians currently have T1D. Traditionally considered a childhood disease, more than half of all T1D diagnoses actually occur in adults aged >20 years. The aim of this study was to examine the experiences of individuals living with adult-onset T1D in relation to their diagnosis experience, access to health care, and post-diagnostic wellbeing. Methods: An exploratory, cross-sectional study was undertaken. Participants completed an online survey delivered via Qualtrics detailing their experiences with adult-onset T1D. The survey contained four domains: (1) demographic information; (2) diagnosis experience; (3) access to care; and (4) post-diagnostic wellbeing, including the Hospital Anxiety and Depression Scale (HADS); and the Diabetes Distress Scale (T1-DDS). Data analysis was conducted using STATA SE (v16). Descriptive statistics (means, counts) were used to describe continuous data, and frequencies and odds ratios were used to describe categorical data. Results: One hundred and twenty adults (mean age 49 years; 78% female) with adult-onset T1D (mean age at diagnosis 37 years) completed the survey. The most common symptoms prior to diagnosis were excess thirst, fatigue, frequent urination, and unintended weight loss. Half (50%) the sample received their T1D diagnosis from a general practitioner (GP). Several participants reported being misdiagnosed by their GP initially, representing an unadjusted odds ratio of 3.1 (95% CI 1.5, 6.2). Nearly half of all participants presented with anxiety (mean 7 (s.d. 4)) on the HADS, and most reported moderate levels of diabetes-related distress according to the T1-DDS. Conclusions: These findings provide a starting point to understanding the experiences of adults living with adult-onset T1D and can be used to raise awareness of their challenges and needs. These exploratory findings can also be used to inform a larger, population-based study. Approximately half of all type 1 diabetes (T1D) diagnoses occur in adulthood, yet scarce attention has been paid to adult-onset T1D in academic literature. Evidence suggests that adults with T1D may experience poorer long-term physical and mental health outcomes. The aim of this study was to examine the experiences of individuals living with adult-onset T1D, with particular focus on their diagnosis experience, access to healthcare, and post-diagnostic wellbeing. [ABSTRACT FROM AUTHOR]

Purpose Over half the population in Australia with arthritis and other musculoskeletal conditions is aged 25–64 years. This reflects the peak income-earning years for most, yet little research has examined the influence of arthritis on work issues specific to younger people. The aim of this research was to examine the work-related experiences of younger people (defined as those aged 18–50 years). Methods A qualitative exploratory design was used. Participants with inflammatory arthritis or osteoarthritis were recruited from the community, including urban and rural settings. An interview guide was based on the World Health Organization's International Classification of Functioning, Disability and Health. Deductive and inductive coding techniques were used to identify emerging work-related themes from the data. Results Semi-structured interviews were conducted with 21 younger people (90% female) with a mix of arthritis conditions, vocational backgrounds and career stages. Three themes were identified: (1) the perceived impacts of arthritis on career trajectories, (2) the impacts of arthritis on participants' workplace environment, employers, and colleagues, and (3) the personal toll of working with arthritis. The personal toll of working with arthritis relates to the arthritis-attributable impacts of physical and psychological symptoms on productivity and presenteeism in the workplace. Conclusion Younger people with arthritis experience numerous challenges at key stages of their careers, from career planning through to productive working. This can be used to inform workplace accommodations for people with arthritis and increase awareness of likely barriers to work productivity among colleagues, employers and clinicians. [ABSTRACT FROM AUTHOR]

Abstract: Background: Percutaneous coronary intervention (PCI) is a common cardiac procedure used to treat obstructive coronary artery disease. Patient‐centred care is a priority in cardiovascular health having been shown to increase patient satisfaction, engagement with rehabilitation activities and reduce anxiety. Evidence indicates that patient‐centred care is best achieved by routine collection of patient‐reported outcomes (PROs). However, existing patient‐reported outcome measures (PROMs) have limited the patient involvement in their development. Aims: To identify and explore outcomes, patients perceive as important following PCI. Methods: A qualitative design was adopted. Eight focus groups and five semi‐structured interviews were conducted with 32 patients who had undergone PCI in the previous 6 months. Outcomes were identified and mapped under the U.S. Food and Drug Administration (FDA) patient‐reported outcome (PROs) domains of feeling (physical and psychological outcomes), function and evaluation. Inductive and deductive analysis methods were used with open, axial and thematic coding. Results: Consistent with prior studies, patients identified feeling and function outcomes such as reductions in physical and psychological symptoms and the ability to perform usual activities as important. Participants also identified a range of new outcomes, including confidence to return to usual activities and evaluation domains such as adverse effects of medications and the importance of patient communication. Conclusion: The findings of this research should be considered in the design of a cardiac PROM for PCI patients. A PROM which adequately assesses these outcomes can provide clinicians and hospital staff with a foundation in which to address these concerns or symptoms. [ABSTRACT FROM AUTHOR]