Conceptualising multiple conditions in Australia: First steps to systemic change to meet the needs of people with serious long-term illnesses

摘要

Since the 1970s greater numbers of people are now living with several serious long term illnesses. These include rarer genetic conditions and ‘lifestyle conditions’ as well as those of an idiopathic nature. This article examines the growing need for new terms and concepts that reflect the changes in the lives of people living with long-term serious illnesses.Members of the Chronic Illness Alliance attended a workshop where they presented their experiences and views of living with multi-morbidities. Consumers were concerned about treatment side-effects, polypharmacy, adverse events and the need for coordinated care. Following this workshop, the Chronic Illness Alliance undertook a literature review using the principles of meta-synthesis to explore the consumer perspective in literature on multi-morbidities. This method aims to systematise qualitative concepts and it provided the means to identify whether the concerns raised by consumers were recognised in the literature. The risks identified by consumers were used both as search terms and analytical terms. While the consumer perspective appeared absent in the literature, many authors showed similar concern about the tardiness of health systems to acknowledge the impact of multi-morbidities for consumers and the associated risks. More importantly the literature review demonstrated that problems associated with concepts, definitions and data collection impact on health care and service delivery. This in turn dictates how consumers receive their health care services and ultimately influences the safety and quality of their health care. The article discusses the concepts of co-morbidity and multi-morbidity in relation to data collection, definitions and treatment guidelines and their implications for consumers with regard to treatments, side-effects, polypharmacy, adverse events and coordinating care. There is a pressing need to develop and employ concepts that better reflect consumers’ needs and experiences in order to improve safety and quality of health care. The article argues that the adoption of better concepts is a first step to achieving systemic change on behalf of people with multiple conditions.