Effective provider-patient communication of a rare disease diagnosis: A qualitative study of people diagnosed with schwannomatosis.
Vanessa L Merker, Scott R Plotkin, Martin P Charns and 3 others
PMID 33051127WHAT IT FOUND
Patients with schwannomatosis said good diagnosis communication meant understandable education about cause, prognosis and options; belief in their pain; and a trusting team relationship.
Poor explanation left them distressed and unable to seek care.
Key findings
01At diagnosis, participants valued in-depth understandable education, psychosocial support including belief in their symptoms, and a collaborative therapeutic alliance.
02Inadequate explanations of neurofibromatosis or schwannomatosis made it more difficult for patients to cope with their diagnosis.
03Multiple participants were confused about genetic testing, including what their own results showed, whether results would affect care, and options for family members.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study included only 18 English-speaking adults who received most of their care in the U.S., so it may not represent children, non-English speakers, other countries, or other rare diseases. Participants discussed events that happened many years in the past, and the study did not verify participants' reports of diagnostic errors against clinical documentation. The study did not systematically collect race, ethnicity, or socioeconomic status. The study relied on patient reports and did not include clinician perspectives or real-time observation of encounters. The findings are themes from interviews, not tested effects of a communication intervention.
Declared interests
The paper reports no financial conflicts of interest. The article is listed as supported by NIH and other government research funding.
The easy way to misread this
Do not read these elements as tested interventions that improve outcomes. The study asked 18 patients what they valued about diagnosis communication and did not compare providers or measure health outcomes.