RT Journal Article SR Electronic T1 Lower limb chronic edema management program: Perspectives of disengaged patients on challenges, enablers and barriers to program attendance and adherence JF bioRxiv FD Cold Spring Harbor Laboratory SP 693135 DO 10.1101/693135 A1 Linda A. M. Khong A1 Amma Buckley A1 Wendy Johnson A1 Vinicius Cavalheri YR 2019 UL http://biorxiv.org/content/early/2019/07/04/693135.abstract AB Background Chronic edema (CO) is a progressive, physically disfiguring and currently incurable condition. A multifaceted program has been recommended to manage the swelling. However, there is little evidence investigating patients’ perspectives following the program, particularly for those who have poor adherence or are disengaged.Aim To investigate the perceived challenges faced by disengaged participants with lower limb CO by identifying their enablers and barriers to participating in a Physiotherapy CO program.Method An exploratory qualitative approach was used. A purposive sampling strategy was adopted to recruit participants. Those with more than three months swelling and who had low adherence or attendance (disengaged) to the CO program were invited to participate. Semi-structured interviews with six participants from a CO clinic in a tertiary hospital were conducted. Data was thematically analyzed and findings in terms of enablers and barriers were subsequently reflected in the light of a theoretical framework.Results All six participants were morbidly obese (BMI 47 ± 4 kg/m2) with multiple chronic comorbidities. Enablers and barriers detected included physical, psychological and social factors that interplay to present multidimensional challenges that influence the participants’ adjustment to managing their CO. For the disengaged participants in this study, their under-managed lower limb CO was a progression towards being housebound and having a gradually increasing level of disability.Conclusion Chronic edema, if left unmanaged, can have a profound debilitating impact on the individual permanently. Understanding the challenges faced by patients with lower limb CO has implications for developing a more patient-centered multidisciplinary approach to clinical practice and suggests the need for further research.