"The Space Is as Much Yours as It Is Mine": Insights From Health System Leaders About Inclusive Leadership.

The long-standing systemic inequities highlighted during the COVID-19 pandemic and current events of social injustice have underscored the importance for health system leaders to develop or strengthen their competencies related to equity, diversity and inclusion. Inclusive leadership values different perspectives across organizational hierarchies. It reduces psychological distress and improves the performance of individuals and teams in health settings. Through semi-structured interviews, we explored the inclusive leadership experiences of five health system leaders. This study offers initial insights by unpacking inclusive leadership as a competency, identifying barriers and enablers and providing advice for current and future health system leaders.

Financial hardship in families of children or adolescents with cancer: a systematic literature review.

Financial hardship in childhood cancer contributes to poor health outcomes and global disparities in survival, but the extent of the financial burden on families is not yet fully understood. We systematically reviewed financial hardship prevalence and individual components characterising financial hardship across six domains (medical, non-medical, and indirect costs, financial strategies, psychosocial responses, and behavioural responses) and compared characteristics across country income levels using an established theory of human needs. We included 123 studies with data spanning 47 countries. Extensive heterogeneity in study methodologies and measures resulted in incomparable prevalence estimates and limited analysis. Components characterising financial hardship spanned the six domains and showed variation across country income contexts, yet a synthesis of existing literature cannot establish whether these are true differences in characterisation or burden. Our findings emphasise a crucial need to implement a data-driven methodological framework with validated measures to inform effective policies and interventions to address financial hardship in childhood cancer.

Financial toxicity experienced by rural Australian families with chronic kidney disease.

AIM: Chronic kidney disease (CKD) and its treatment places a financial burden on healthcare systems and households worldwide, yet little is known of its financial impact, on those who reside in rural settings. We aimed to quantify the financial impacts and out-of-pocket expenditure experienced by adult rural patients with CKD in Australia. METHODS: A web based structured survey was completed between November 2020 and January 2021. English speaking participants over 18 years of age, diagnosed with CKD stages 3-5, those receiving dialysis or with a kidney transplant, who lived in a rural location in Australia. RESULTS: In total 77 (69% completion rate) participated. The mean out of pocket expenses were 5056 AUD annually (excluding private health insurance costs), 78% of households experienced financial hardship with 54% classified as experiencing financial catastrophe (out-of-pocket expenditure greater than 10% of household income). Mean distances to access health services for all rural and remote classifications was greater than 50 kilometres for specialist nephrology services and greater than 300 kilometres for transplanting centres. Relocation for a period greater than 3 months to access care was experienced by 24% of participants. CONCLUSION: Rural households experience considerable financial hardship due to out-of-pocket costs in accessing treatment for CKD and other health-related care, raising concerns about equity in Australia, a high-income country with universal healthcare.

An analysis of how health systems integrated priority-setting in the pandemic planning in a sample of Latin America and the Caribbean countries.

BACKGROUND: Latin America and the Caribbean (LAC) are among those regions most affected by the COVID-19 pandemic worldwide. The COVID-19 pandemic has strained health systems in the region. In this context of severe healthcare resource constraints, there is a need for systematic priority-setting to support decision-making which ensures the best use of resources while considering the needs of the most vulnerable groups. The aim of this paper was to provide a critical description and analysis of how health systems considered priority-setting in the COVID-19 response and preparedness plans of a sample of 14 LAC countries; and to identify the associated research gaps. METHODS: A documentary analysis of COVID-19 preparedness and response plans was performed in a sample of 14 countries in the LAC region. We assessed the degree to which the documented priority-setting processes adhered to established quality indicators of effective priority-setting included in the Kapiriri and Martin framework. We conducted a descriptive analysis of the degree to which the reports addressed the quality parameters for each individual country, as well as a cross-country comparison to explore whether parameters varied according to independent variables. RESULTS: While all plans were led and supported by the national governments, most included only a limited number of quality indicators for effective priority-setting. There was no systematic pattern between the number of quality indicators and the country's health system and political contexts; however, the countries that had the least number of quality indicators tended to be economically disadvantaged. CONCLUSION: This study adds to the literature by providing the first descriptive analysis of the inclusion of priority-setting during a pandemic, using the case of COVID-19 response and preparedness plans in the LAC region. The analysis found that despite the strong evidence of political will and stakeholder participation, none of the plans presented a clear priority-setting process, or used a formal priority-setting framework, to define interventions, populations, geographical regions, healthcare setting or resources prioritized. There is need for case studies that analyse how priority-setting actually occurred during the COVID-19 pandemic and the degree to which the implementation reflected the plans and the parameters of effective priority-setting, as well as the impact of the prioritization processes on population health, with a focus on the most vulnerable groups.

The psychosocial cost burden of cancer: A systematic literature review.

BACKGROUND AND OBJECTIVE: Psychosocial costs, or quality of life costs, account for psychological distress, pain, suffering and other negative experiences associated with cancer. They contribute to the overall economic burden of cancer that patients experience. But this category of costs remains poorly understood. This hinders opportunities to make the best cancer control policy decisions. This study explored the psychosocial cost burden associated with cancer, how studies measure psychosocial costs and the impact of this burden. METHODS: A systematic literature review of academic and grey literature published from 2008 to 2018 was conducted by searching electronic databases, guided by the Institute of Medicine's conceptualization of psychosocial burden. Results were analyzed using a narrative synthesis and a weighted proportion of populations affected was calculated. Study quality was assessed using the Ottawa-Newcastle instrument. RESULTS: A total of 25 studies were included. There was variation in how psychosocial costs were conceptualized and an inconsistent approach to measurement. Most studies measured social dimensions and focused on the financial consequences of paying for care. Fewer studies assessed costs associated with the other domains of this burden, including psychological, physical, and spiritual dimensions. Fourty-four percent of cancer populations studied were impacted by psychosocial costs and this varied by disease site (38%-71%). Two studies monetized the psychosocial cost burden, estimating a lifetime cost per case ranging from CAD$427753 to CAD$528769. Studies were of varying quality; 60% of cross-sectional studies had a high risk of bias. CONCLUSIONS: Consistency in approach to measurement would help to elevate this issue for researchers and decision makers. At two-thirds of the total economic burden of cancer, economic evaluations should account for psychosocial costs to better inform decision-making. More support is needed to address the psychosocial cost burden faced by patients and their families.

Action to address the household economic burden of non-communicable diseases.

The economic burden on households of non-communicable diseases (NCDs), including cardiovascular diseases, cancer, respiratory diseases, and diabetes, poses major challenges to global poverty alleviation efforts. For patients with NCDs, being uninsured is associated with 2-7-fold higher odds of catastrophic levels of out-of-pocket costs; however, the protection offered by health insurance is often incomplete. To enable coverage of the predictable and long-term costs of treatment, national programmes to extend financial protection should be based on schemes that entail compulsory enrolment or be financed through taxation. Priority should be given to eliminating financial barriers to the uptake of and adherence to interventions that are cost-effective and are designed to help the poor. In concert with programmes to strengthen national health systems and governance arrangements, comprehensive financial protection against the growing burden of NCDs is crucial in meeting the UN's Sustainable Development Goals.

Returning to Unpaid Work after Stroke: The Psychosocial Outcomes in Stroke Cohort Study.

BACKGROUND: While returning to paid work is a crucial marker of stroke recovery, little is known about the differences in unpaid work by sex following stroke. We aimed to determine the sex differences in participation in unpaid work 12 months after stroke. METHODS: Psychosocial outcomes in stroke were a prospective, multicentre observational study that recruited individuals, 18-64 years, within 28 days of stroke from New South Wales, Australia. Unpaid work was defined as ≥5 h per week of one or more of: unpaid domestic work for the household; unpaid care of others; looking after own children without pay or looking after someone else's children without pay. Data was collected before stroke, 28 days (baseline), 6 and 12 months follow-up. RESULTS: Eighty per cent of women and 52% of men engaged in ≥5 h per week of unpaid work before stroke. At 12 months after, 69% of women and 53% of men completed ≥5 h of unpaid work per week. For women, there was a significant association between participation in unpaid work at 12 months and having financially dependent children (OR 2.67; 95% CI 1.08-6.59). A return to unpaid work in men was associated with participation in unpaid work before stroke (OR 3.74; 95% CI 2.14-6.53). CONCLUSIONS: More women are engaged in unpaid work before and at 12 months after stroke, but there is a reduction in the proportion of women returning to unpaid work at 12 months not seen in men. Consideration may need to be given to the development of rehabilitation strategies targeted at the specific needs of stroke survivors.

Methodological challenges to collecting clinical and economic outcome data: Lessons from the pilot dialysis outcomes India study.

AIM: Contemporary data on clinical and economic outcomes and quality of care amongst dialysis patients in India are not available. This pilot prospective study aimed to evaluate the feasibility of data collection and follow up within routine dialysis practice to inform setting up a dialysis registry. METHODS: An electronic instrument was developed to collect information on clinical and socio-demographic characteristics, outcome and out-of-pocket expenditure on incident patients commencing haemodialysis (HD) at two centres. Dialysis unit staff were trained in collecting and entering information on an electronic case record form. Patients were followed up at 1, 3, 6, 9 and 12 months to ascertain outcomes and treatment related costs. RESULTS: A total of 119 patients (37 females, age 47.5 ± 17.2 years) were enrolled. After 1 year, 38 (32%) patients were continuing on HD; 35 (29%) had died, 30 (25%) underwent a kidney transplant, and 16 (13%) had stopped dialysis. We noted a high prevalence of catastrophic health expenditure. Data collection was facilitated by appointing a designated staff member who received an incentive. Collection of financial information, clinical course for patients transferring out of the primary unit and the cause of death, when it occurred out of hospital was challenging. CONCLUSION: Prospective data collection of incident dialysis patients was feasible but is resource-intensive. High out-of-pocket costs force some patients to stop dialysis and can generate a sense of despair. Poor patient experiences and suspicion over the use of such data adversely affects collection of important clinical and health economic data.

Low prioritization of latent tuberculosis infection-A systemic barrier to tuberculosis control: A qualitative study in Ontario, Canada.

BACKGROUND: Eliminating tuberculosis (TB) in low-incidence countries is an important global health priority, and Canada has committed to achieve this goal. The elimination of TB in low-incidence countries requires effective management and treatment of latent tuberculosis infection (LTBI). This study aimed to understand and describe the system-level barriers to LTBI treatment for immigrant populations in the Greater Toronto and Hamilton Area, Ontario, Canada. METHODS: A qualitative study that used purposive sampling to recruit and interview health system advisors and planners (n = 10), providers (n = 13), and clients of LTBI health services (n = 9). Data were recorded, transcribed verbatim, and analyzed using content analysis. RESULTS: Low prioritization of LTBI was an overarching theme that impacted four dimensions of LTBI care: management, service delivery, health literacy, and health care access. These factors explained, in part, inequities in the system that were linked to variations in health care quality and health care access. While some planners and providers at the local level were attempting to prioritize LTBI care, there was no clear pathway for information sharing. CONCLUSIONS: This multiperspective study identified barriers beyond the typical socioeconomic determinants and highlighted important upstream factors that hinder treatment initiation and adherence. Addressing these factors is critical if Canada is to meet the WHO's global call to eradicate TB in all low incidence settings.

The unfunded priorities: an evaluation of priority setting for noncommunicable disease control in Uganda.

BACKGROUND: The double burden of infectious diseases coupled with noncommunicable diseases poses unique challenges for priority setting and for achieving equitable action to address the major causes of disease burden in health systems already impacted by limited resources. Noncommunicable disease control is an important global health and development priority. However, there are challenges for translating this global priority into local priorities and action. The aim of this study was to evaluate the influence of national, sub-national and global factors on priority setting for noncommunicable disease control in Uganda and examine the extent to which priority setting was successful. METHODS: A mixed methods design that used the Kapiriri & Martin framework for evaluating priority setting in low income countries. The evaluation period was 2005-2015. Data collection included a document review (policy documents (n = 19); meeting minutes (n = 28)), media analysis (n = 114) and stakeholder interviews (n = 9). Data were analysed according to the Kapiriri & Martin (2010) framework. RESULTS: Priority setting for noncommunicable diseases was not entirely fair nor successful. While there were explicit processes that incorporated relevant criteria, evidence and wide stakeholder involvement, these criteria were not used systematically or consistently in the contemplation of noncommunicable diseases. There were insufficient resources for noncommunicable diseases, despite being a priority area. There were weaknesses in the priority setting institutions, and insufficient mechanisms to ensure accountability for decision-making. Priority setting was influenced by the priorities of major stakeholders (i.e. development assistance partners) which were not always aligned with national priorities. There were major delays in the implementation of noncommunicable disease-related priorities and in many cases, a failure to implement. CONCLUSIONS: This evaluation revealed the challenges that low income countries are grappling with in prioritizing noncommunicable diseases in the context of a double disease burden with limited resources. Strengthening local capacity for priority setting would help to support the development of sustainable and implementable noncommunicable disease-related priorities. Global support (i.e. aid) to low income countries for noncommunicable diseases must also catch up to align with NCDs as a global health priority.

Barriers to treatment adherence for individuals with latent tuberculosis infection: A systematic search and narrative synthesis of the literature.

OBJECTIVES: We investigated the rates of initiation and completion of treatment for latent TB infection (LTBI), factors explaining nonadherence and interventions to improve treatment adherence in countries with low TB incidence. DESIGN: A systematic search was performed in PubMed and Embase. All included articles were assessed for risk of bias. A narrative synthesis of the results was conducted. RESULTS: There were 54 studies included in this review. The proportion of people initiating treatment varied from 24% to 98% and the proportion of people completing treatment varied from 19% to 90%. The main barriers to adherence included the fear or experience of adverse effects, long duration of treatment, financial barriers, lack of transport to clinics (for patients), and insufficient resources for LTBI control. While interventions like peer counseling, incentives, and culturally specific case management have been used to improve adherence, the proportion of people who initiate and complete LTBI treatment still remains low. CONCLUSION: To further improve treatment and LTBI control and to fulfill the World Health Organization goal of eliminating TB in low-incidence countries, greater priority should be given to the use of treatment regimens involving shorter durations and fewer adverse effects, like the 3-month regimen of weekly rifapentine plus isoniazid, supported by innovative patient education and incentive strategies.

The household economic burden for acute coronary syndrome survivors in Australia.

BACKGROUND: Studies of chronic diseases are associated with a financial burden on households. We aimed to determine if survivors of acute coronary syndrome (ACS) experience household economic burden and to quantify any potential burden by examining level of economic hardship and factors associated with hardship. METHODS: Australian patients admitted to hospital with ACS during 2-week period in May 2012, enrolled in SNAPSHOT ACS audit and who were alive at 18 months after index admission were followed-up via telephone/paper survey. Regression models were used to explore factors related to out-of-pocket expenses and economic hardship. RESULTS: Of 1833 eligible patients at baseline, 180 died within 18 months, and 702 patients completed the survey. Mean out-of-pocket expenditure (n = 614) in Australian dollars was A$258.06 (median: A$126.50) per month. The average spending for medical services was A$120.18 (SD: A$310.35) and medications was A$66.25 (SD: A$80.78). In total, 350 (51 %) of patients reported experiencing economic hardship, 78 (12 %) were unable to pay for medical services and 81 (12 %) could not pay for medication. Younger age (18-59 vs ≥80 years (OR): 1.89), no private health insurance (OR: 2.04), pensioner concession card (OR: 1.80), residing in more disadvantaged area (group 1 vs 5 (OR): 1.77), history of CVD (OR: 1.47) and higher out-of-pocket expenses (group 4 vs 1 (OR): 4.57) were more likely to experience hardship. CONCLUSION: Subgroups of ACS patients are experiencing considerable economic burden in Australia. These findings provide important considerations for future policy development in terms of the cost of recommended management for patients.

The effectiveness of interventions to reduce the household economic burden of illness and injury: a systematic review.

OBJECTIVE: To determine the nature, scope and effectiveness of interventions to reduce the household economic burden of illness or injury. METHODS: We systematically reviewed reports published on or before 31 January 2014 that we found in the CENTRAL, CINAHL, Econlit, Embase, MEDLINE, PreMEDLINE and PsycINFO databases. We extracted data from prospective controlled trials and assessed the risk of bias. We narratively synthesized evidence. FINDINGS: Nine of the 4330 studies checked met our inclusion criteria ­ seven had evaluated changes to existing health-insurance programmes and two had evaluated different modes of delivering information. The only interventions found to reduce out-of-pocket expenditure significantly were those that eliminated or substantially reduced co-payments for a given patient population. However, the reductions only represented marginal changes in the total expenditures of patients. We found no studies that had been effective in addressing broader household economic impacts ­ such as catastrophic health expenditure ­ in the disease populations investigated. CONCLUSION: In general, interventions designed to reduce the complex household economic burden of illness and injury appear to have had little impact on household economies. We only found a few relevant studies using rigorous study designs that were conducted in defined patient populations. The studies were limited in the range of interventions tested and they evaluated only a narrow range of household economic outcomes. There is a need for method development to advance the measurement of the household economic consequences of illness and injury and facilitate the development of innovative interventions to supplement the strategies based on health insurance.

The economic impact of epilepsy: a systematic review.

BACKGROUND: In this review we aimed to determine the economic impact of epilepsy and factors associated with costs to individuals and health systems. METHODS: A narrative systematic review of incidence and case series studies with prospective consecutive patient recruitment and economic outcomes published before July 2014 were retrieved from Medline, Embase and PsycInfo. RESULTS: Of 322 studies reviewed, 22 studies met the inclusion criteria and 14 were from high income country settings. The total costs associated with epilepsy varied significantly in relation to the duration and severity of the condition, response to treatment, and health care setting. Where assessed, 'out of pocket' costs and productivity losses were found to create substantial burden on households which may be offset by health insurance. However, populations covered ostensibly for the upfront costs of care can still bear a significant economic burden. CONCLUSIONS: Epilepsy poses a substantial economic burden for health systems and individuals and their families. There is uncertainty over the degree to which private health insurance or social health insurance coverage provides adequate protection from the costs of epilepsy. Future research is required to examine the role of different models of care and insurance programs in protecting against economic hardship for this condition, particularly in low and middle income settings.

Coordinated care versus standard care in hospital admissions of people with chronic illness: a randomised controlled trial.

OBJECTIVE: To determine whether Care Navigation (CN), a nurse-led hospital-based coordinated care intervention, reduced the use of hospital services and improved quality of life for patients with chronic illness. DESIGN: Randomised controlled trial; participants were allocated to CN or standard care. PARTICIPANTS AND SETTING: Patients with chronic illness presenting to the emergency department of Nepean Hospital, Sydney, New South Wales. High-risk status for an unplanned admission was defined as i) three or more unplanned hospital admissions in 12 months for patients aged ≥ 70 or at least one admission for cardiac or respiratory disease in patients aged 16-69 years; or ii) judged by a CN nurse to be high risk and likely to benefit. MAIN OUTCOME MEASURES: Numbers of re-presentations or readmissions, quality of life, time to re-presentation, readmission or death, length of stay, and access to hospital and community health services. RESULTS: 500 participants were randomised between May 2010 and February 2011; 359 by previous unplanned admission and 141 by clinical impression. The CN group received more community health services (rate ratio, 1.94; 95% CI, 1.35-2.81; P < 0.001) than participants receiving standard care; however, this did not result in statistically significant differences in number of re-presentations (rate ratio, 0.83; 95% CI, 0.68-1.01; P = 0.07), number of readmissions (rate ratio, 0.85; 95% CI, 0.70-1.04; P = 0.11), quality of life at 24 months (mean difference, 0; 95% CI, - 0.10 to 0.09, P = 0.93), or other measures. CONCLUSIONS: CN did not improve quality of life or reduce unplanned hospital presentations or admissions despite community health services almost doubling. Future service development should explore potential benefits of linking navigated intrahospital care to ongoing, proactive care planning and delivery in the community. TRIAL REGISTRATION: ACTRN12609000554268.

Dialysis outcomes in India: a pilot study.

AIM: Long-term prospective studies of health outcomes for dialysis patients are common in many parts of the world but have been rare in India. As renal replacement therapy becomes more widespread and more affordable, the measurement of patient outcomes and comparison with national and international benchmarks will be a valuable tool in planning health services and demonstrating effective use of resources. To this end, we describe a pilot study of dialysis outcomes in India which could form the basis of a comprehensive national programme of data collection. METHODS: One hundred incident patients commencing chronic haemodialysis in two north Indian nephrology centres will be followed prospectively for 12 months. Clinical outcome data will be collected comparable with that used by established dialysis registries in other countries. The economic impact of dialysis upon patients is central to the use of this treatment, so data will be collected on the direct and indirect costs of the treatment and the economic impact of dialysis on the patient and their family. VALUE OF PROJECT: This prospective cohort study of dialysis outcomes in northern India is a pilot for the collection of similar comparative data in dialysis centres in different states across the country with a view to the development of a national dialysis registry. The information on the economic impact of dialysis on patients and their families will provide one of the first detailed insights into this critical aspect of dialysis services.