Lower limb chronic edema management program: Perspectives of disengaged patients on challenges, enablers and barriers to program attendance and adherence

Abstract

Background27 Chronic edema (CO) is a progressive, physically disfiguring and currently incurable 28 condition. A multifaceted program has been recommended to manage the swelling. However, 29 there is little evidence investigating patients' perspectives following the program, particularly 30 for those who have poor adherence or are disengaged. 31 Aim 32 To investigate the perceived challenges faced by disengaged participants with lower limb CO 33 by identifying their enablers and barriers to participating in a Physiotherapy CO program. 34 Method 35 An exploratory qualitative approach was used. A purposive sampling strategy was adopted to 36 recruit participants. Those with more than three months swelling and who had low adherence 37 or attendance (disengaged) to the CO program were invited to participate. Semi-structured 38 interviews with six participants from a CO clinic in a tertiary hospital were conducted. Data 39 was thematically analyzed and findings in terms of enablers and barriers were subsequently 40 reflected in the light of a theoretical framework. Results42 All six participants were morbidly obese (BMI 47 ± 4 kg/m 2 ) with multiple chronic 43 comorbidities. Enablers and barriers detected included physical, psychological and social 3 44 factors that interplay to present multidimensional challenges that influence the participants' 45 adjustment to managing their CO. For the disengaged participants in this study, their under-46 managed lower limb CO was a progression towards being housebound and having a 47 gradually increasing level of disability. 48 Conclusion 49 Chronic edema, if left unmanaged, can have a profound debilitating impact on the individual 50 permanently. Understanding the challenges faced by patients with lower limb CO has 51 implications for developing a more patient-centered multidisciplinary approach to clinical 52 practice and suggests the need for further research. 4 53 Mentality plays a big part in it. You've got to have confidence in the people 54 who are doing things for you. You've got to look at it as an optimist, if 55 you're going to look at it as a pessimist then you are not going to get better. 56 You have to feel like you can keep going (P2). 57 Introduction 58 Chronic edema (CO) has been defined as swelling in the tissue that persists beyond three 59 months, and is considered a progressive, physically disfiguring and incurable condition [1, 2]. 60 Primary CO can occur with congenital malformation or secondary to other diseases including 61 obesity, venous disease or cancer treatment [1-3]. Regardless of the etiology, CO has been 62 deemed to be a clinical manifestation of lymphatic system failure [4, 5]. Hence, current 63 opinion recommends CO, rather than "lymphedema", as a more encompassing term to be 64 used for edema arising from lymphatic origins [6, 7]. 65 Chronic edema is under-recognized and under-managed globally [8]. This has been 66 postulated as due to a lack of published diagnostic and epidemiological data [7, 9, 10]. 67 Hence, there is little published ...