Future research priorities for morbidity control of lymphedema

Abstract

Background:Innovation in the treatment of lower extremity lymphedema has received low priority from the governments and pharmaceutical industry. Advancing lymphedema is irreversible and initiates fibrosis in the dermis, reactive changes in the epidermis and subcutis. Most medical treatments offered for lymphedema are either too demanding with a less than satisfactory response or patients have low concordance due to complex schedules. A priority setting partnership (PSP) was established to decide on the future priorities in lymphedema research.Methods:A table of abstracts following a literature search was published in workshop website. Stake holders were requested to upload their priorities. Their questions were listed, randomized, and sent to lymphologists for ranking. High ranked ten research priorities, obtained through median score, were presented in final prioritization work shop attended by invited stake holders. A free medical camp was organized during workshop to understand patients’ priorities.Results:One hundred research priorities were selected from priorities uploaded to website. Ten priorities were short listed through a peer review process involving 12 lymphologists, for final discussion. They were related to simplification of integrative treatment for lymphedema, cellular changes in lymphedema and mechanisms of its reversal, eliminating bacterial entry lesions to reduce cellulitis episodes, exploring evidence for therapies in traditional medicine, improving patient concordance to compression therapy, epidemiology of lymphatic filariasis (LF), and economic benefit of integrative treatments of lymphedema.Conclusion:A robust research priority setting process, organized as described in James Lind Alliance guidebook, identified seven priority areas to achieve effective morbidity control of lymphedema including LF. All stake holders including Department of Health Research, Government of India, participated in the PSP.

The James Lind Alliance process approach: scoping review

“…The number of studies using this process has increased annually, with 12 published in 2017. In our sample, 27 of the studies were from the UK,1 5 7 12–35 8 were from Canada,36–43 and 1 each was from India44 and Spain 45…”

“…One of the studies also gave information about socioeconomic status 26. Another study gave only information about socioeconomic status 44…”

“…However, 24 other studies also mentioned psychosocial issues without noting who had done so 1 7 14–19 25–27 29 31–39 41–43. Ten studies did not mention psychosocial issues 5 12 20–22 24 26 28 44 45. The types of health conditions that were addressed included gastrointestinal,26–28 neurological,1 5 7 16 21 38 dermatological,13 15 17 29 34 45 endocrinal14 32 42 and cancer22 25 41 43 conditions.…”

Human skin fibrosis: up‐regulation of collagen type III gene transcription in the fibrotic skin nodules of lower limb lymphoedema

“…Comparatively, few reports are available on the pathogenesis of fibrosis in human lymphoedema and most of them mark COL‐1 as the key fibrotic marker. Separately, a ‘priority‐setting partnership’ established at the Institute of Applied Dermatology (IAD), India, highlighted the need for scientific research exploring the cellular changes of lymphoedema with special emphasis on Integrative Medicine (IM) treatment .…”

Comprehensive Decongestive Therapy as a Treatment for Secondary Lymphedema of the Lower Extremity and Quality of Life of Women After Gynecological Cancer Surgery

“…There is no standard approach that is applicable to all patients, despite the numerous therapies available in the treatment of LLL [ 22 , 23 ]. Initially conservative measures were recommended for the treatment of lymphedema, while surgical management was generally considered palliative [ 25 ].…”