Details

Autor(en) / Beteiligte

• Brown, Kerri
• Ponton, Marisel
• Davidson, Elenita
• Arun, Banu
• Volk, Robert J.
• Shete, Sanjay
• Peterson, Susan K.
• Makhnoon, Sukh

Titel

What do cancer genetic providers want us to know about variant reclassification and recontact that we are not asking? A thematic analysis of open‐ended survey responses

Ist Teil von

• Cancer, 2024-06

Erscheinungsjahr

2024

Link zum Volltext

Quelle

Alma/SFX Local Collection

Beschreibungen/Notizen

• Abstract Background Accurate variant classification and relaying reclassified results to patients is critical for hereditary cancer care delivery. Over a 5‐ to 10‐year period, 6%–15% of variants undergo reclassification. As the frequency of reclassifications increases, the issue of whether, how, when, and which providers should recontact patients becomes important but remains contentious. Methods The authors used inductive thematic analysis to analyze open‐ended comments offered by oncologists and genetic counselors (GCs) from a large national survey. Results Of the 634 oncologists and cancer GCs, 126 (20%) offered substantive free‐text comments. Four thematic areas emerged: 1) ambiguity over professional responsibility to recontact, 2) logistical challenges with recontact, 3) importance of inter‐institutional communication, and 4) suggested solutions. Some oncologists felt that laboratories, not them, are responsible for recontact; others believed that ordering providers/GCs were responsible; GCs readily acknowledged their own responsibility in recontact but added important caveats. Besides the lack of up‐to‐date patient contact information, providers raised unique challenges with recontact: financial instability of laboratories, lack of clinical resources, contacting family members, and accumulating burden of reclassifications. There were numerous calls for developing practice guidelines on prioritizing variants for recontact and discussion on whether duty for recontact may be fulfilled via unidirectional, low touch modalities. Potential solutions to recontact including national databases and patient facing databases were discussed. Conclusions The authors confirm previous themes of stakeholder opinions and add previously unreported contextual details to qualify those themes. Clarifying provider responsibilities through professional guidelines for reclassification and recontact addressing the subthemes identified here will better serve all constituencies. Accurate variant classification and relaying reclassified results to patients is critical for hereditary cancer care delivery. This analysis of free‐text responses from a large national survey of health care providers confirms previous themes of stakeholder opinions, adds previously unreported contextual details to qualify those themes, and identifies potential solutions to returning reclassified results.