b'SECTION 4: GUIDELINESSuch efforts could help families to navigate care, support better health, and foster a trusting clinical FOR COMMUNICATIONrelationship. Without effective communication,families can feel alone and unsupported by the IN LYMPHEDEMA ANDhealthcare system. Below, we highlight the eight core functions of communication and suggest ways that LYMPHATIC DISEASES clinicians can strive to fulfill these functions for their patients and families.Authors: Bryan Anthony Sisk, MD, MSCI, AnnaB. COMMUNICATION FUNCTIONSMichelle Kerr, PhD, and Shelbie Blake Fishman, BSA. INTRODUCTIONManaging UncertaintyPatients with rare diseases experience myriad High-quality communication is essential to providinguncertainties, some of which can be mitigated or are safe and effective medical care, especially for patientstime-limited (e.g., What will this MRI show?) while with rare lymphatic diseases (LD). Prior work hasothers will persist (e.g., How will this disease affect identified eight core functions that communicationme in the future?). Furthermore, clinicians, at times, fulfills for patients and families affected by lymphaticincrease patient uncertainty by providing information and vascular disorders: exchanging information,about unknowns. As such, clinicians should strive to building relationships, enabling self-management,understand and acknowledge the patients uncertainty, managing uncertainty, responding to emotions,minimize uncertainties that are scientific or factual,making decisions, providing validation, and supportingand help patients tolerate uncertainties that will hope 193 . Providing reliable information is alsopersist. To overcome communication barriers, some associated with better mental health, physical health,communication researchers have suggested a and the ability to navigate the healthcare system forframework using what if questions to acknowledge patients with rare vascular anomalies. (Manuscriptsand address the patients uncertainties 204 . Additionally, under review) In other serious illnesses, communicationclinicians must remain aware of their own uncertainty and care are interrelated, with better communicationtolerance and how it might affect their decision-supporting better care. For example, patients andmaking and communication with patients.parents who report better communication also report better physical and psychosocial health, functionalExchanging Informationability, and emotional well-being 194,195.Furthermore,Patients with rare diseases struggle to find high-quality effective clinician-family communication is essential toinformation about their disease, which leads them to support informed decision-making and engagementsearch the internet and social media. Many families and involvement of the family in care 196198 . struggle to determine which online information is Many patients and families affected by lymphatictrustworthy. As a result, these families often rely on diseases, however, experience communicationclinicians to provide reliable and understandable challenges. Parents of children with vascular anomalies,information and help clarify information foundfor example, report persistent uncertainties related tothrough external sources, but most clinicians have the limited information available about a rare disease,limited knowledge about these diseases. As such,unknowns about the childs future well-being andit is imperative that clinicians with expertise in ability to lead a normal life, and worries about futurelymphedema and lymphatic diseases provide honest, social stigma 199201 . This uncertainty can affect theaccurate, and understandable information about the fulfillment of all communication functions, leading disease and its management. Given the complexityto frustration, confusion, and diminished trust inof these diseases, clinicians should strive to useclinicians 193 . Patients and parents can respond totext, pictures, and videos to improve the patients communication failures with confrontational advocacy,understanding. Ideally, these informational resources which can lead to further tensions in the clinicalcan be incorporated into standard clinical workflows to relationship 202,203 . These communication challenges areensure all patients have access to understandable and likely exacerbated for families affected by congenitaltrustworthy information. Moreover, patients with rare lymphedema syndromes and lymphatic anomalies duediseases often become experts on their condition. to a lack of knowledgeable clinicians, limited treatmentClinicians should ask patients questions to encourage options, limited interest in the scientific community,patients to provide or clarify information.and long diagnostic odysseys.Making DecisionsClinicians caring for patients with lymphedema (LE)Engaging in shared decision-making is a standard and lymphatic anomalies should strive to fulfill theirexpectation for all clinicians. However, patients can patients and families multiple communication needs.differ in what type of role they desire in decision-making. Some might prefer to defer decisions to the | Standardized Approach for the Diagnosis and Management of Lymphedema (LE) and Lymphatic Diseases (LD)|42'