The Burden of a Multiple Myeloma Diagnosis on Patients and Caregivers in the First Year: Western European Findings.

Background: This research aimed to quantify the burden of illness (BoI) in transplant eligible (TE) and transplant non-eligible (TNE) newly diagnosed multiple myeloma (NDMM) patients and their caregivers, in the first year after diagnosis: at months 0, 3, and 12. Methods: Prospective, cross-sectional, observational NDMM study of TE and TNE patients and their caregivers from France, Germany, Italy, and Spain was conducted between May 2019 and January 2021. A structured, online questionnaire measuring disease burden, direct and costs, out-of-pocket expenses, and health-related quality of life (HRQoL) was used. Descriptive statistics were performed. Results: A total of 164, 160, and 190 NDMM patients [>65 years; self-described healthy; not working; living with caregiver] answered at months 0, 3, and 12. Patients lost independence to perform daily activities; mean pain intensity rose and opioid utilization increased, more significantly among TNE patients. Overall health status and HRQoL remained stable. Median 3-month direct medical costs peaked at month 3. Specialist consultations and hospital admissions were the greatest cost amongst TE and TNE patients. Home adaptations increased out-of-pocket expenditures amongst TNE patients. Patients describing themselves as working spent a median 0 hours in the office at all time points. A total of 131, 122, and 124 caregivers answered at months 0, 3, and 12. Mean self-rated burden score rose. By month 12, half of caregivers developed stress, anxiety or depression. Most employed caregivers continued working. Productivity was low at month 0 with a trend of recovering at month 12. Caregivers of TNE compared to TE patients reported greater time burden. Caregivers' HRQoL was stable over time. Conclusion: NDMM is burdensome for patients and caregivers in the first year after diagnosis. TNE patients are more dependent on caregivers and incur higher care costs than TE patients. Despite the financial, physical, and emotional burden, HRQoL remains stable possibly indicating resilience and illness adjustment amongst patients and caregivers.

"The times they are a-changin'": A longitudinal, mixed methods case study of a hospital transformation.

BACKGROUND: Changes to hospital infrastructure are inevitable in ever-evolving healthcare systems. The redevelopment of hospitals and opening of new buildings can be a complex and challenging time for staff as they must find ways to deliver safe and high-quality care while navigating the complexities and uncertainties of change. This study explores the perspectives and experiences of staff and patients before and after the opening of a new hospital building as part of a large public hospital redevelopment in Sydney, Australia. METHODS: The study comprised a longitudinal mixed methods case study design. Methods included two rounds of staff surveys (n = 292 participants), two rounds of staff interviews (n = 66), six rounds of patient surveys (n = 255), and analysis of hospital data at tri-monthly intervals over two years. Data were compared before (2019) and after (2020) a new hospital building opened at a publicly funded hospital in Sydney, Australia. RESULTS: Four key themes and perspectives emerged from the interviews including change uncertainty, communication effectiveness, staffing adequacy and staff resilience. Significant differences in staff perceptions of change readiness over time was identified. Specifically, perceptions that the organisational change was appropriate significantly decreased (2019: 15.93 ± 3.86; 2020: 14.13 ± 3.62; p < .001) and perceptions that staff could deal with the change significantly increased (2019: 17.30 ± 4.77; 2020: 19.16 ± 4.36; p = .001) after the building opened compared to before. Global satisfaction scores from patient survey data showed that patient experience significantly declined after the building opened compared to before (2020: 81.70 ± 21.52; 2019: 84.43 ± 18.46)), t(254) = -64.55, p < 0.05, and improved a few months after opening of the new facilities. This coincided with the improvement in staff perceptions in dealing with the change. CONCLUSIONS: Moving into a new hospital building can be a challenging time for staff and patients. Staff experienced uncertainty and stress, and displayed practices of resilience to deliver patient care during a difficult period of change. Policy makers, hospital managers, staff and patients must work together to minimise disruption to patient care and experience. Key recommendations for future hospital redevelopment projects outline the importance of supporting and informing staff and patients during the opening of a new hospital building.

Exploring the ripple effects of an Australian hospital redevelopment: a protocol for a longitudinal, mixed-methods study.

INTRODUCTION: Hospital redevelopment projects typically intend to improve hospital functioning and modernise the delivery of care. There is research support for the proposition that redevelopment along evidence-based design principles can lead to improved quality and safety. However, it is not clear how redevelopment influences the wider context of the hospital and its functioning. That is, beyond a limited examination of intended outcomes (eg, improved patient satisfaction), are there additional consequences (positive, negative or unintended) occurring within the hospital after the physical environment is changed? Is new always better? The primary purpose of this study is to explore the ripple effects of how hospital redevelopment may influence the organisation, staff and patients in both intended and unintended ways. METHODS AND ANALYSIS: We propose to conduct a longitudinal, mixed-methods, case study of a large metropolitan hospital in Australia. The study design consists of a series of measurements over time that are interrupted by the natural intervention of a hospital redevelopment. How hospital redevelopment influences the wider context of the hospital will be assessed in six domains: expectations and reflections of hospital redevelopment, organisational culture, staff interactions, staff well-being, efficiency of care delivery and patient experience. Methods of data collection include a hospital-wide staff survey, semistructured interviews, a network survey, a patient experience survey, analysis of routinely collected hospital data and observations. In addition to a hospital-level analysis, a total of four wards will be examined in-depth, with two acting as controls. Data will be analysed using thematic, statistical and network analyses, respectively, for the qualitative, quantitative and relational data. ETHICS AND DISSEMINATION: The study has been reviewed and approved by the relevant Ethics Committee in New South Wales, Australia. The results will be actively disseminated through peer-reviewed journals, conference presentations and in report format to the stakeholders.