(NSP-19) Diagnostic Journeys in Myeloma: A Qualitative Exploration of Barriers and Facilitators

Multiple myeloma (MM) is considered one of the most challenging cancers to diagnose leading to frequent diagnostic delays. Delays are associated with increased complications due to more aggressive disease at diagnosis, end organ damage and reduced disease-free survival. Reviews of medical records and claims data estimate a median of 163 (IQR 84 – 306) days from symptom presentation to diagnosis and report half of patients have 3 or more primary care visits before specialist referral. These studies have demonstrated and quantified delayed diagnosis but give us limited insight into why delays are happening. Qualitative research is well suited to address this question by capturing the processes, context and perspective of patients’ diagnostic journeys. Our objective was to conduct in depth semi-structured interviews of adults with MM to better understand their journeys to MM diagnosis.


Methods: A purposive sample of MM patients (age 18+, diagnosed within the last 10 years, English or Spanish speaking) were recruited to participate in a 60-minute interview. Our semi-structured interview guide, informed by the Models of Pathways to Treatment, focused on understanding patients’ diagnostic journeys and barriers and facilitators to MM diagnosis. Audio recorded interviews were transcribed and analyzed using thematic analysis using ATLAS.ti (v.25.0.1).

Results:

Among 30 participants, 16 were female, 6 identified as Hispanic or Latino, 12 as Black/African American, 10 as White and 2 as Asian. Mean age was 69 years old. Patients’ diagnostic journey began with, new or prolonged symptoms, critical medical events (traumatic fall, kidney failure) or abnormal test results. We identified several themes that describe barriers and facilitators that influenced patients’ journeys to a myeloma diagnosis. Facilitators to diagnosis included: 1) Encouragement from social support networks to seek care for new or worsening symptoms, 2) Existing primary care provider relationships and rapport leading to timely evaluation and specialists and 3) Self-advocacy in the face of persistent symptoms. Barriers to diagnosis included 1) Conservative management in the face of persistent symptoms, 2)  Dismissal of myeloma symptoms due to age and/or preexisting comorbidities, and 3) Limited knowledge of MM presentation delaying initial testing and diagnosis.


Conclusions:

Our findings indicate that, earlier diagnosis of MM may have been possible for some patients and suggest several strategies for improvement. Most patients were entirely unaware of MM prior to their diagnosis, highlighting the opportunity for public education campaigns about the symptoms of MM. We identified instances of continued conservative management in the face of symptoms (pain, anemia) that were not improving, resulting in missed opportunities for quicker MM diagnosis. Targeted education could help clinicians identify opportunities for further diagnostic workup (SPEP) when managing symptoms that are not improving.