Genital Edema Education Needs in the USA: A Mixed Method Investigation

Shelley Dicecco, Rhian Noble-Jones, Melanie Thomas

Research output: Contribution to conferencePresentation

Abstract

Introduction: Genital edema (GE) is of unknown incidence in the USA but accounts for a small portion of most lymphedema therapist’s case load. Patient and physician awareness of treatment availability and the healthcare payment model are two of several factors thought to influence a patient’s access to care. Lymphedema therapists’ confidence in their knowledge for managing GE and their exact education needs are unknown. Aim: The investigation was part of an international project to understand the educational needs of lymphedema healthcare professionals caring for patients with GE, the factors influencing need and how it might be met. This report relates findings in relation to USA participants. Method: This mixed method investigation used an online survey, distributed through national and international professional lymphoedema groups, followed by a face-toface focus group in south-eastern USA. Results: The online survey had 89 USA-based healthcare professional respondents (56 Physical Therapists, 28 Occupational Therapists and 5 others). Two-thirds had over 5 years’ experience in lymphedema and most were female. 70% currently treat GE but the focus group clarified it is usually only a fraction of the case load. Significantly, only 1% felt identification and referral to services was prompt. Most did not use GE specific assessment tools. Additional education on GE is needed after Lymphedema Certification (CLT) according to 93%. Very few were trained to pediatric GE. Despite a high level of confidence in knowledge of compression garments and the majority rating it ‘essential’, it remained the subject of highest individual need. An issue confounded by problematic access to suitable garments, explained the focus group. Lowest confidence was in: electrotherapy, physician interventions and legal, ethical and psychosocial concerns. Over two-third of respondents suggested addressing education needs via e-learning packages and videos from experts. Almost as high was the preference for leaflets, booklets, handouts and educational videos for patients. Collaborative events with Pelvic Health specialists were identified as good education opportunities by over 50% of USA respondents. The focus group provided useful insight of the influence of the payment model on access to treatment for patients and how this influenced the education need of the attending therapist. Conclusions: The need for additional education in management of GE was identified by the responding USA healthcare professionals. Although influenced by wider factors such as the payer model and patient and physician awareness, there is opportunity to address the needs through improved online education resources and collaborative learning.
Original languageAmerican English
StatePublished - Nov 2021
Event10th International Lymphoedema Framework Conference - Copenhagen, Denmark
Duration: Nov 1 2021 → …

Conference

Conference10th International Lymphoedema Framework Conference
Period11/1/21 → …

Disciplines

  • Medicine and Health Sciences

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