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CLL Society’s Tribune Ask and Tell Survey: Patient & Caregiver Feedback

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Q3 2021 Poll

During the third quarter of 2021, CLL Society conducted a poll among readers of The CLL Society Tribune about the COVID-19 pandemic and treatment decisions, mental health challenges, and taking medication. There were 138 respondents.

Survey Demographics:

Of the respondents who completed the survey, 93.48% were CLL patients and 6.52% were caregivers. Regarding gender, 65.22% were female and 34.78% were male. Regarding race and ethnicity, 92.3% of respondents identified as White or Caucasian, 3.5% as Hispanic or Latino, 0.7% as Indigenous, American Indian or Alaskan Native, 0.7% as Asian American, and 2.1% as Other.

Poll Results:

The current COVID-19 pandemic (select all that apply):

current COVID-19 pandemic

When asked about the effect of the current COVID-19 pandemic to treatment decisions, almost half (46.74%) stated it would have no influence on their therapy decisions. 14.71% of respondents stated this was not applicable, 12.35% of respondents stated it makes them less likely to change their present CLL therapy, and 10.59% responded it makes them less likely to receive a therapy that requires hospitalization.

Which is the single most important factor in helping you or your loved one take CLL medication every day?

most important factor in helping you or your loved one take CLL medication every day

The largest percentage of respondents (47.83%) stated this question was not applicable to them. 18.84% of respondents stated that using a pillbox was the most important factor in helping them to remember to take CLL medication and 10.87% stated that setting an alarm reminder was the most helpful. For the 9.42% who selected Other, some of these responses included: six responding they take their medication at the same time every day, mostly in the mornings or with breakfast, two people using a chart or spreadsheet that they check-off, two people use the pill packaging as a reminder, 1 person by habit, and 1 person who uses both an alarm on their cell phone and a pill box.

In the past 12 months, have you experienced any mental health challenges?

have you experienced any mental health challenges

When asked if they have experienced mental health challenges in the past 12 months, about half of the respondents (47.1%) stated yes, while 43.48% replied no, 8.7% were unsure, and 0.72% stated they prefer not to say.

Thank you to everyone who completed our brief Ask & Tell Survey published in The CLL Society Tribune, 3rd quarter of 2021. We appreciate your feedback and contribution to knowledge about CLL patients and caregivers.

Originally published in The CLL Society Tribune Q4 2021: Caregiver Edition.