Ishwaria Subbiah: If life’s in the journey and not the endpoint, then preparing our patients and caregivers for the EVP journey is the top priority! 

 Ishwaria Subbiah shared on Twitter:

“Wow! That OS w EVP! This wait for approval is the perfect time to put your symptom management teams on alert! Because these patients will need it. EVP’s low-grade AEs are exactly why PRO results MUST be reported out with the primary outcome and patients preparing pts and caregivers for the EVP journey is priority #1! Here’s why:

• 50% had ‘low grade’ peripheral sensory neuropathy. FYI Grade 2 is “moderate symptoms; limiting instrumental ADL (IADLs).”
• 40% had ‘low grade’ pruritus. FYI Grade 2 pruritus is “widespread & intermittent; skin changes from scratching (eg edema, papulation, excoriations, lichenification, oozing/crusts); oral intervention indicated; limiting IADL”
• 33% had ‘low grade’ alopecia. FYI Grade 2 alopecia is “Hair loss of >=50%…readily apparent to others; a wig or hair piece is necessary if desired; associated with psychosocial impact.” Gr 2 is the max — there’s no gr 3/4/5.
• 33% had ‘low grade’ maculopapular rash. FYI Grade 2 is “Macules/papules covering 10 – 30% BSA w or wo symptoms (e.g., pruritus, burning, tightness); limiting IADLs; rash covering > 30% BSA w or wo mild symptoms”
• 29% had ‘low grade’ fatigue. Grade 2 fatigue is ” Fatigue not relieved by rest; limiting IADLs.”
• 28% had ‘low grade’ diarrhea. Grade 2 diarrhea is “Increase of 4 – 6 stools per day over baseline; moderate increase in ostomy output compared to baseline; limiting IADLs”

FYI for the lay persons: Instrumental activities of daily living (IADLs) are things you do to take care of yourself and your home, such as:

• Use the phone, answering and calling others.
• Shop for groceries on your own.
• Plan, heat, serve your own meals.
• Manage your meds, refill them as needed, take them correctly.
• Clean your home on your own.
• Get around on your own by car, taxi, or public transportation.
• Manage money and pay bills.   

Practice-changing — yes! in that we ensure we prepare our patients and caregivers not just for the possibility of a longer life (!) but also for the management of side effects! Every disrupted IADL may have major consequences for a patient and family:

• Significant rise in caregiver burden – imagine the IADLs falling solely on the working caregiver, with young kids, indefinitely);
• Impact on independence and in turn, job security. i.e. trouble driving to work? needing to cut back work hours from that fatigue, diarrhea, neuropathy, etc.?;
• Changes in everyday life from perceptible physical changes inc. hair loss, widespread rash, plus active symptoms of neuropathy, diarrhea, fatigue, etc. all impact social interactions and support.

One more time: If life’s in the journey and not the endpoint, then preparing our patients and caregivers for the EVP journey is the top priority!  “

Source: Ishwaria Subbiah/Twitter