Exploring the lived experiences of individuals living with Charcot neuro-osteoarthropathy in Australia: A qualitative research study

AimCharcot neuro-osteoarthropathy (CNO) is a rare but serious inflammatory process in individuals with peripheral polyneuropathy leading to the development of fractures, dislocations and permanent foot deformity. Most commonly, CNO occurs in individuals with diabetes and the progression of significant foot deformity can predispose the individual to pressure-related ulcerations and increased risk of lower limb amputation. The lived experience of the individual with CNO is largely unknown. This study aims to explore the lived experience of individuals affected by active CNO and CNO in remission in Australia.MethodsThis was a qualitative study using semi-structured interviews of a heterogeneous purposeful sample of individuals with CNO from a high-risk foot service in Australia. Interview questions were related to the physical, financial, social and emotional impacts of CNO and were developed based on the validated SF-36 outcome measure tool. A reflexive thematic analysis approach was used to analyse the dataset.ResultsFourteen participants were recruited including seven males, seven females with age ranging from 36 to 74 years. Four themes were derived: (1) A burden to family and caregivers and feeling isolated and alone. (2) A lack of certainty relating to outcomes leading to increased anxiety. (3) Adaptive health behaviour changes made as a result of the CNO diagnosis. and (4) Limited access to healthcare information and healthcare support systems.ConclusionsThe burden of CNO extends beyond the physical limitations of living with a significant foot deformity and the associated increased risk for further limb threatening complications. Individuals with CNO report feelings of increased anxiety, a loss of independence and feel they are a burden to their family impacting on their individual roles at home, including the ability to provide financially. This should be considered when managing individuals with CNO, with more holistic approaches to care required. This research highlights that increased engagement with mental health support services, social work and peer-group support along with greater access to evidence-based information on the management of CNO may better support the psycho-social needs of this population.