Feedback to My Son’s CF Care Team: Together, We Make It Better

As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.

| 5 min read
Stacy-Allen-Headshot
Stacy Allen
Stacy Allen Evan Doctor Selfie

“Please take a few minutes to fill out this survey about your recent appointment.” These words flood my messages and inbox after EVERY SINGLE medical appointment for my son, Evan. Medical Survey Fatigue: a by-product of the hours we spend at clinic and doctors' visits. I get it. Oh, how I get it.

After eight years of having to verbally answer questions about the care received and not knowing if the time I spent answering all those long surveys made any difference, I jumped at an opportunity to make things better.

The old Patient and Family Experience of Care survey was created so CF patients and families could let their care teams know what went well and what didn't. Good idea, but it had 52 questions that you had to answer over the phone!

So, I joined a committee to help the CF Foundation create a new Experience of Care (XoC) survey. The goal was to make it shorter, easier to access, and more meaningful. I wanted to see how the feedback we provided as patients and families actually made a difference in the experiences, we had with our CF care team.

I met with Dr. Fadi Asfour, center director for Primary Children's CF Center in Salt Lake City, to answer a few questions together that would help patients and families know what to expect with the new XoC survey. Dr. Asfour has been a key contributor to not only the creation of the new XoC Survey but also the artistic creator for the new XoC logo!

  1. What makes this survey different?

    This is a completely new survey, designed with patients and families for patients and families. The survey includes questions specific to CF about infection prevention and control, the way the care team responds to your questions and concerns, care planning, and overall communication and quality of the care experience. This survey is short, easy to take, and asks about in-person and virtual-care experiences.
  2. When will I get this survey and how do I respond?

    You will be surveyed once every six months following an in-person clinic visit and/or a telehealth visit (by phone or video). There will be multiple options to respond, including by text message (SMS/link) and by email.
  3. Will all patients and families have the opportunity to complete a survey?

    CF care centers that have signed up to participate in the XoC Survey, as well as patients who are included in the CF Foundation's Patient Registry will have the opportunity to complete the survey. All CF Foundation-accredited centers, including the affiliated ones, are highly encouraged to participate.
  4. Will my responses be anonymous?

    Your responses to the survey will be kept anonymous and will not be linked to you or your child's name or birthdate.
  5. How will my feedback be used?

    Your responses will be shared via a new real-time dashboard directly to your CF center as timely, actionable data for improvement! The feedback captured in the survey will let your CF care center know what is most important to you, what's working well, and what needs improvement. Creating a better care experience is important to the whole team -- patients and families, clinicians, and professional staff.
  6. If I want to complete the survey or have questions, who should I ask?

    We encourage all patients and families to reach out to their CF care center to ask about the new XoC survey. We also encourage CF care centers to regularly share their results and feedback with their patients and families.
  7. Who was involved in creating this survey?

    The Experience of Care Steering Committee is comprised of adults with CF, parents of children and adults with CF, and CF care team members from across the country. This group was instrumental in designing the new XoC survey. We are grateful to each of them for their excellent work!

As a CF community, we are incredibly blessed to have a network of accredited CF care centers taking care of our loved ones living with cystic fibrosis. My son, Evan, continues to have the most dedicated care team members on his side since the beginning of his journey with CF. As his mother, I am grateful to be a part of a CF care center that values my feedback and insight as a key member of my son's care team. Together, we make it better!

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Parents & Guardians | Care Team
Stacy-Allen-Headshot

Stacy is above all else a mother to two beautiful boys, Jaxson, 10, and Evan, 7. Evan was diagnosed with cystic fibrosis at 5 weeks old. Motivated by the parents who have gone before her, Stacy is passionate to do her part to propel the mission of the Cystic Fibrosis Foundation forward. Stacy is actively involved in her local CF community and serves as one of the Primary Children's Cystic Fibrosis Clinic's Quality Improvement Patient/Family Partners. She also serves on the Primary Children's Cystic Fibrosis Foundation Parent Advisory Council and is an active board member for the Utah/Idaho chapter of the Cystic Fibrosis Foundation. Nationally, Stacy serves as one of the tri-chairs for the Experience of Care Steering Committee as well as one of the patient/family members for the Liver Disease Guidelines Committee. Stacy lives in Utah with her husband and two boys, supporting her sons in their sports, activities, and piano. Follow Stacy on Instagram and Evan's journey on Instagram.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.