2023 Patient & Care Partner Support Group Member Survey

Questions marked with a * are required

Please take a few moments to let us know about your experience with the CLL Society Patient & Care Partner Support Group. Your feedback will allow us to demonstrate the value and impact of these groups, and call attention to ways in which we can improve the experience for you and other members of the CLL/SLL community. Thank you in advance for your time.

The primary CLL Society Support Group that I attend is:

If you attend more than one Support Group for meetings, please select the other Support Groups below: (Optional)

Atlanta Metro CLL Support Group

Boston CLL Support Group

Central Florida CLL Support Group

Central Massachusetts CLL Support Group

Chicago CLL Support Group

Cincinnati CLL Support Group

City of Hope CLL Support Group

Denver CLL Support Group

DFW – Dallas Area CLL Support Group

Fort Lauderdale CLL Support Group

Houston-area CLL Support Group

Long Island CLL Support Group

Milwaukee CLL Support Group

Montreal CLL Support Group

Nashville CLL Support Group

New Jersey CLL Support Group

New Orleans and Surrounding Areas CLL Support Group

New York City CLL Support Group

Northeast Ohio CLL Support Group

Oberlin, OH, CLL Support Group

Orange County CLL Support Group

Orlando CLL Support Group

Philadelphia CLL Support Group

Portland CLL Support Group

Raleigh Area CLL Support Group

Rochester NY CLL Support Group

Sacramento CLL Support Group

Salt Lake City CLL Support Group

San Diego CLL Support Group

San Francisco area CLL Support Group

Seattle and All Points North CLL Support Group

Seattle-Olympic Peninsula CLL Support Group

Suncoast CLL Support Group (Sarasota)

Toronto CLL Support Group

Twin Cities CLL Support Group

Washington DC-area CLL Support Group

West LA CLL Support Group

Western North Carolina CLL Support Group

Physicians with CLL Support Group

Central Watch and Wait Support Group

Eastern Watch and Wait Support Group

Western Watch and Wait Support Group

Please answer all questions, whether or not you are the patient.

Concerning Living with CLL/SLL:

	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree
I am more comfortable with my or the patient’s CLL or SLL diagnosis since attending my local CLL Society Support Group.	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree

I feel more supported by a new network of friends whose lives also have been touched by CLL or SLL since attending my local CLL Society Support Group.	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree

Concerning CLL/SLL Knowledge and Management:

	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree
I am more knowledgeable about CLL or SLL since attending my local CLL Society Support Group.	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree

I am more involved in my or the patient’s CLL or SLL management since attending my local CLL Society Support Group.	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree

I have changed the management of my or the patient’s CLL or SLL since attending my local CLL Society Support Group (i.e. different testing, treatments, or treatment teams).	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree

Concerning the Primary Local CLL Society Support Group:

	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree
I would recommend my primary local CLL Society Support Group to other CLL or SLL patients and families.	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree

I am pleased with the leadership and facilitation of my primary local CLL Society Support Group.	Strongly Agree	Agree	Neutral	Disagree	Strongly Disagree

What webinar topics are you most interested in? Please rank your top choices with #1 being the most important.

Integrative Medicine Approaches in CLL – Including Supplements, Exercise, Lifestyle

Managing Side Effects of Common CLL/SLL Medications

Diagnosis, When to Treat, Common B Symptoms - Including Fatigue

Mental Health – Coping with Anxiety During Watch and Wait

Cardiovascular Concerns in CLL

Treatments in CLL - include newer options like pirtobrutinib, bispecifics, and CAR-T, include known side effects

General Immunity and CLL

COVID-19 and Other Infectious Diseases

ASH Research Highlights

Improving Communication with Your Healthcare Team

Palliative Care and Hospice

If not included above, what other webinar topics would you be interested in CLL Society hosting?

If you are interested in attending a CLL-focused support group that is organized around a shared characteristic, please select all that apply below.

CLL or SLL patients or care partners 50 years of age or younger

Care partners to a person with CLL or SLL

CLL or SLL patients without care partners

Double refractory – failed two or more treatments, aggressive CLL, and/or Richter’s Transformation

I am not interested in these options

Other, please specify:

Please select your preference about scheduling some of your support group meetings in-person.

Remain virtual for all meetings, I am uncomfortable with meeting in-person

Occasional in-person meetings, but only if they are hosted outside

Occasional in-person meetings that can be hosted inside

Other, please specify

Which best describes your role with CLL or SLL? Please select all that apply:

CLL or SLL patient

Care partner to a CLL or SLL patient

Loved one of CLL or SLL patient (but not the primary care partner)

Healthcare professional

Prefer not to say

Other, please specify:

What is your age?

What is your gender?

Male

Female

Transgender Female

Transgender Male

Non-binary/ Non-Conforming

Gender Variant/ Third gender

Prefer not to say

Prefer to identify as (please specify):

Please specify your race and ethnicity; select all that apply:

White or Caucasian

Hispanic or Latino

Black or African American

Asian or Asian American

Indigenous, First Nation, American Indian or Alaska Native

Native Hawaiian or Pacific Islander

Middle Eastern or North African

Don’t know / Not sure

Prefer not to say

Please provide any additional comments or feedback you would like to share with CLL Society:

Please note, all comments are anonymous unless you wish to include your name and contact information.