Beverley Essue

Achieving a balanced life in the face of chronic illness

The increasing prevalence of chronic disease is a driver of health system reform in most economically advanced nations. A consistent theme within these reforms is building greater patient-centredness into the health care delivery. This study aims to develop an in-depth understanding of the experience of patients and family carers affected by chronic illness that will be the basis on which to propose policy and health system interventions that are patient-centred. Participants struggled with the ongoing tasks of balancing their lives with the increasing demands and intrusion of chronic illness. Their attempts to achieve a balance were seriously hampered by fragmented services, complexity in navigating health services, relationships with health professionals and others, and co-morbidity. Future policy directions include designing models of care and infrastructure that enable patients and their family carers to balance life and illness, and aligning patient-centred care not only within health services but also with community and social support services.

A patient-centred approach to health service delivery: improving health outcomes for people with chronic illness

BackgroundThe Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers.MethodWe interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease.ResultsPatients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes.ConclusionsIn order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case.

We can't afford my chronic illness! The out-of-pocket burden associated with managing chronic obstructive pulmonary disease in western Sydney, Australia

Objectives To examine the household economic consequences that are associated with out-of-pocket spending for the care and management of chronic obstructive pulmonary disease (COPD). Methods A cross-sectional study. A self-administered questionnaire was posted to all patients enrolled (n = 656) in the Respiratory Ambulatory Care Service in western Sydney, Australia, between 1 January 2001 and 31 August 2008. Two hundred and eighteen completed questionnaires were received. Results One hundred and sixty-nine (78%) respondents experienced economic hardship while managing their illness. Fifty-nine (27%) reported being unable to pay for medical or dental expenses, 38 (18%) were unable to pay for medication, 59 (27%) were unable to pay rent or mortgage and 40 (19%) were unable to pay utility bills. Respondents experiencing economic hardship paid more out-of-pocket overall ( x ¯   =   AUD

Multimorbidity is associated with higher out-of-pocket spending: a study of older Australians with multiple chronic conditions

544 versus x ¯   =   AUD

Falling through the cracks: the hidden economic burden of chronic illness and disability on Australian households

280 ; t148 = −2.03, P = 0.04) and for medications and oxygen specifically ( x ¯   =   AUD

The economic impact of epilepsy: a systematic review

247 versus x ¯   =   AUD

How are patients managing with the costs of care for chronic kidney disease in Australia? A cross-sectional study.

125 ; t83 = −3.98, P < 0.0001). Fifty-six (46%) respondents had catastrophic levels of out-of-pocket spending which made them 7.5 times more likely to experience economic hardship (95% confidence interval [CI]: 1.2-46.3). Conclusions The costs associated with living with COPD make it difficult for patients and their families to afford necessary living expenses while also paying health care expenses. This is alarming within Australia where a well-funded universal health insurance system is in place. Rising co-payments for medications and private medical consultations, poorly subsidised health support (e.g. home oxygen), non-health logistics (e.g. transport) and eligibility barriers for existing social support are making chronic illness management seriously economically stressful, especially for those with low incomes, including the retired.

A Multicenter Prospective Cohort Study of Quality of Life and Economic Outcomes after Cataract Surgery in Vietnam: The VISIONARY Study

Most older Australians have at least one chronic health condition. The management of chronic disease is associated with potentially severe economic consequences for patients and their households, partially due to the financial burden associated with out-of-pocket costs for medical and health-related care. A questionnaire was mailed to a cross-sectional sample of older Australians in mid-2009, with 4574 responding. Multivariate logistic regression models were developed to investigate the relationships between multimorbidity and out-of-pocket spending on medical and health-related expenses, including the factors associated with severe financial stress among older Australians. We found a positive relationship between number of chronic conditions and out-of-pocket spending on health and that people with multiple chronic conditions tend to be on lower incomes. People with five or more chronic conditions spent on average five times as much on their health as those with no diagnosed chronic conditions and each additional chronic disease added 46% to the likelihood of a person facing a severe financial burden due to health costs.

The impact of chronic illness on workforce participation and the need for assistance with household tasks and personal care by older Australians

Major reform plus targeted strategies have the potential to provide relief.

How Are Household Economic Circumstances Affected After a Stroke? The Psychosocial Outcomes In StrokE (POISE) Study

BackgroundIn this review we aimed to determine the economic impact of epilepsy and factors associated with costs to individuals and health systems.MethodsA 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.ResultsOf 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.ConclusionsEpilepsy 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.