Vanessa L Merker1, Scott R Plotkin2, Martin P Charns3, Mark Meterko4, Justin T Jordan5, A Rani Elwy6. 1. Center for Healthcare Organization and Implementation Research (CHOIR), Edith Nourse Rogers Memorial Veterans Hospital, 200 Springs Road, Bedford, MA 01730, USA; Department of Neurology and Cancer Center, Massachusetts General Hospital, 55 Fruit Street Boston, MA 02114, USA. Electronic address: Vanessa.Merker@va.gov. 2. Department of Neurology and Cancer Center, Massachusetts General Hospital, 55 Fruit Street Boston, MA 02114, USA. Electronic address: splotkin@mgh.harvard.edu. 3. Department of Health Law, Policy and Management, Boston University School of Public Health, 715 Albany St., Boston, MA 02118, USA; Center for Healthcare Organization and Implementation Research (CHOIR), VA Boston Healthcare System, 150 S. Huntington Avenue, Boston, MA 02130, USA. Electronic address: Martin.Charns@va.gov. 4. Department of Health Law, Policy and Management, Boston University School of Public Health, 715 Albany St., Boston, MA 02118, USA; Office of Reporting, Analytics, Performance, Improvement and Deployment (RAPID), Veterans Health Administration, 200 Springs Road, Bedford, MA 01730, USA. Electronic address: Mark.Meterko@va.gov. 5. Department of Neurology and Cancer Center, Massachusetts General Hospital, 55 Fruit Street Boston, MA 02114, USA. Electronic address: jtjordan@mgh.harvard.edu. 6. Center for Healthcare Organization and Implementation Research (CHOIR), Edith Nourse Rogers Memorial Veterans Hospital, 200 Springs Road, Bedford, MA 01730, USA; Department of Health Law, Policy and Management, Boston University School of Public Health, 715 Albany St., Boston, MA 02118, USA. Electronic address: rani.elwy@va.gov.
Abstract
OBJECTIVE: To understand diagnostic communication preferences of patients with schwannomatosis, a rare disease. METHODS: Eighteen adults with schwannomatosis from across the United States participated in semi-structured phone interviews about their diagnostic experiences. Interview transcripts were inductively coded using thematic analysis. RESULTS: We identified three elements of effective diagnostic communication: education (particularly about etiology, prognosis, and treatment options); psychological support (to cope with the new diagnosis and any prior diagnostic harms); and efforts to develop therapeutic alliance (i.e. feelings of collaboration, trust, and social-emotional rapport). Poor communication was characterized by inadequate or jargon-heavy explanations, perceived disinterest in or disbelief of symptoms, and lack of partnership. Effective communication helped people feel informed and cope with their condition; poor communication could cause significant psychological distress. CONCLUSIONS: During diagnosis, patients need education and psychosocial support; the presence of therapeutic alliance between clinicians and patients facilitates this assistance. Diagnostic communication that includes these elements helps patients proactively engage in healthcare decision-making and connect with appropriate treatments. PRACTICE IMPLICATIONS: When disclosing a rare disease diagnosis, clinicians should meaningfully educate patients about the disorder and acknowledge diagnosis-related psychosocial stressors. Approaching diagnosis empathetically and collaboratively helps foster therapeutic alliance. Referrals for psychological and genetic counseling are often warranted. Published by Elsevier B.V.
OBJECTIVE: To understand diagnostic communication preferences of patients with schwannomatosis, a rare disease. METHODS: Eighteen adults with schwannomatosis from across the United States participated in semi-structured phone interviews about their diagnostic experiences. Interview transcripts were inductively coded using thematic analysis. RESULTS: We identified three elements of effective diagnostic communication: education (particularly about etiology, prognosis, and treatment options); psychological support (to cope with the new diagnosis and any prior diagnostic harms); and efforts to develop therapeutic alliance (i.e. feelings of collaboration, trust, and social-emotional rapport). Poor communication was characterized by inadequate or jargon-heavy explanations, perceived disinterest in or disbelief of symptoms, and lack of partnership. Effective communication helped people feel informed and cope with their condition; poor communication could cause significant psychological distress. CONCLUSIONS: During diagnosis, patients need education and psychosocial support; the presence of therapeutic alliance between clinicians and patients facilitates this assistance. Diagnostic communication that includes these elements helps patients proactively engage in healthcare decision-making and connect with appropriate treatments. PRACTICE IMPLICATIONS: When disclosing a rare disease diagnosis, clinicians should meaningfully educate patients about the disorder and acknowledge diagnosis-related psychosocial stressors. Approaching diagnosis empathetically and collaboratively helps foster therapeutic alliance. Referrals for psychological and genetic counseling are often warranted. Published by Elsevier B.V.
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