Survey Says…Quality Improvement Is Key for Johns Hopkins Adult CF Program

The quality improvement team for the Johns Hopkins Adult CF Program is working to improve care, program efficiency and patient flow, among other issues. In 2005, the care center conducted a survey of adults with CF involved with the program to help identify strengths and weaknesses.

The following survey excerpt offers a glimpse into top concerns of adults with CF, proposed action steps from Johns Hopkins staff and future quality improvement initiatives.

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Survey Results
One hundred and two adults with CF completed the survey. Based on their responses and written comments, the care center identified the following areas for improvement:

Request: Please update Pulmonary Function Lab equipment.

Johns Hopkins Adult CF care team

The quality improvement team at Johns Hopkins Adult CF care center conducted a survey to help improve their center.

Response: The Pulmonary Function Test (PFT) lab will soon undergo a major overhaul, including the installation of over $250,000 in state-of-the-art PFT machines. We will double the number of PFT machines from three to six, which should significantly speed up the PFT process. The new machines will also instantly print out test results and all previous results.

Request: Please shorten length of wait times for PFTs and appointments.

Response: We anticipate the new equipment in the PFT lab will greatly reduce wait time for PFT’s. We also have access to more clinic rooms than before, so we will plan on moving individuals from waiting rooms to clinic rooms more rapidly. This will allow meetings with nutrition, physical therapy and nursing to occur until the physicians are able to see you. Further, we will include a clinic visit sheet in your packet at registration, which includes a “symptoms report,” so visits can immediately focus on key issues.

Request: Please make sure infection control is well addressed, particularly in waiting rooms.

Response: We have been working on this issue, and will continue to try to improve. Currently, by wearing gowns and gloves for all physical exams, we are taking even greater care than is recommended by the Cystic Fibrosis Foundation. We also completely wipe down all clinic rooms with a disinfectant between visits.

Individuals with particularly hard-to-treat infections are seen at separate times from our normal clinic visits. We will attempt to quickly move people from waiting rooms to a clinic room. If you are ever concerned about the risk of infection exposure in the clinic waiting room, please ask to speak to one of our nurses and we will find a private room for you. In addition, please continue to observe the “three-foot rule” at all times around others with CF.

We have also started a bacterial infection monitoring program in our care center. Every three months, our microbiology lab reviews all of the sputum and throat cultures preformed in-clinic to look for evidence of spread of any particular strain of bacteria. After two rounds of monitoring, the news is outstanding: There has been no evidence of spread between people with CF.

Request: Please provide better social work support

Response: We are currently in the process of finding the right person and the funding for this position. In the meantime, our nurses can help you in many areas, including disability and insurance. They can also provide a phone number for free CF-related legal advice provided by a nationally recognized expert in the field.

Additional Quality Improvement Initiatives at Johns Hopkins:

Our care center has developed a “Personal Care Plan” for each individual in the Adult CF Program. This plan will replace the instruction sheet usually provided at the end of a clinic visit, and will include not only plans from the visit but reminders of the key components of the care regimen.

  • Our staff will meet and fill out a “Pre-clinic Checklist” that lets us make sure all the details of care are addressed during anyone’s visit.

  • We have formed an advisory panel for people with CF and their families to help monitor our improvement efforts and identify new areas to work on.

  • To improve each visit to the care center, we are aiming to make tobramycin level monitoring more efficient. The nurse who administers the antibiotic will also do the blood draw—eliminating a layer of potential confusion.

  • The new Johns Hopkins CF care center website, available at, provides up-to-date information about CF care and updates about our care center. It also enables visitors to connect with other adults living CF and to interact with care center personnel for educational web conferences.

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