06 April 2015

The CF Care Center Accreditation Process

I recently had a chance to learn more about the Cystic Fibrosis Foundation's CF Care Center Accreditation Process, the process that makes sure the care that Bennett is getting at his quarterly CF Clinic appointments is at or above standard, as a part of the work I've been doing with the CF Care Model Redesign and during my trip to the CF Foundation's Volunteer Leadership Conference.

I found learning about this CF Care Center Accreditation process to be incredibly valuable to me as a CF caregiver.  The more I know about what goes in to Bennett's care, the better I can be about paying attention to whether or not he's getting the best of care.

I know other CF families feel the same way.  So, I wanted to share my learning with other CF patients and families who might be interested in the nuts and bolts of how a CF Care Center is accredited.

This information came from a presentation by Bruce Marshall, director of clinical affairs of the Cystic Fibrosis Foundation.  Feel free to watch the webinar presentation yourself here:  I'd love to hear comments at the end of this post as we continue to look for ways to improve it!

So, what is a "CF Care Center" and why it is important?
CF Care Centers are medical clinics within a local hospital partially funded by the CF Foundation that operates multi-disciplinary care for those with Cystic Fibrosis.  There are more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF. (Affiliate programs are smaller CF Care Centers who report to a larger CF Care Center.)

Typically, a CF Care Center includes at least one CF doctor (typically either a pulmonologist or pediatrician with CF training), a nurse, a respiratory therapist, dietitian and a social worker.  Those who work at the CF Care Center are considered part of the CF Care Team.

According to the CF Foundation, "this high quality of specialized care available throughout the [CF Care Center network] has led to the improved length and quality of life for people with CF."

Slide is from presentation from the CF Foundation's Volunteer Leadership Conference 2015.

The History of the CF Care Center Model:
CF Care Center Accreditation started in 1961 with the accreditation of two centers.  This Accreditation took place only 6 years after the Cystic Fibrosis Foundation was formed in 1955.  CF Care Center Accreditation was one of the first initiatives of the Foundation as a way to prolong survival.

In the 1960s, 1970s and 1980s, there was rapid growth of accredited CF Care Centers, mainly in pediatric programs as CF was primarily a pediatric disease.  In the 1980s, however, adult programs really begin to grow.  In the mid to late 90's, adult model programs were evaluated.

In 2000, the CF Foundation began mandating that all CF Care Centers provide adult programs.  These adult programs ranged in a spectrum from CF Care Centers providing adult-oriented CF physicians but sharing the pediatric CF clinic's multidisciplinary team all the way to true CF Adult Care Models, which included a separate and distinct adult CF Team.

In the last year or two, the last pediatric-adult shared programs have separated so that now all adults with CF at every CFF Accredited Center have access to their own adult CF Team.  Now in the US, we now have a mature pediatric and adult care model for all of those with Cystic Fibrosis.

The Accreditation Structure
There are 4 explicit standards that makes a CF Care Center an approved Cystic Fibrosis Foundation CF Care Center.  They are:

Physician Leadership - properly credentialed physicians and physicians experienced in CF care
A multidisciplinary team - such as a respiratory therapist, dietitian, social worker.  Other team members can include a pharmacist, physical therapist, psychologist, chaplain, a patient advocate, etc.
Participation of the CF Clinic to participate in the patient registry, an IRB patient-consented observational study that is used to evaluate much of CF care.
Meeting of clinical teaching and research requirements

The CF Care Center Accreditation CommitteeThese four standards are enforced by a CF Care Center Committee, made up of 9 pediatric and 9 adult CF Care Center Directors, elected representatives from pediatric, adult and affiliate programs. Committee members serve two year, renewable terms.

The CF Care Center Committee's Mission Statement is "to support the CF Foundation Mission by fostering exemplary care of all individuals with CF through: promotion of standards of care, accreditation of care centers, education of providers and advancement of research in all aspects of CF."

The Committee meets twice per year, typically in May and in December for 1.5 to 2 days each time. During these meetings, the Committee evaluates those CF Centers visited during the previous months.  All CF Care Centers are visited by the Committee and are evaluated for accreditation every 3-5 years.

The Accreditation Process
There are two core processes of the Accreditation Process.
They are:
1.) site visits are made by Center Committee members and
2.) annual updates submitted by centers.

The Site Visit Process
When a CF Care Center is visited by the CF Care Center Accreditation Committee, the in-person visit typically last a day or day and a half.  Typically there are two visitors who attend the site visit (usually a pediatric and an adult CF doctor).

During this meeting, the Committee representatives meet with institutional leaders (aka the CF Clinic director, the hospital directors, etc.).  The Committee does a comprehensive assessment of the center.  They look at the clinic, the personnel, the facilities, key labs to CF care (such as the sweat test and microbiology labs).  They do a chart audit and hear report outs of teaching and research, as well as quality improvement.  Sometimes, but not always, the Committee members will meet with the CF Patient Advisory Board.

Once the site visit is complete, the Committee members will get together to share and review their Site Visit findings.  During that meeting, the Committee will go through all centers considered in that 6-month cycle.  A decision is made on accreditation status of each Clinic evaluated.

Accreditation possibilities include:
* Accredit
* Accredit with contingencies (pending immediate action)
* Accredit with provisional status
* Disaccredit

Once a decision is made, critiques based on the site visit are written down and are sent in a letter form back to the CF Care Center, at which time the CF Care Center is notified of their accreditation status.

After revealing the accreditation status of each center, the Committee requests a response from the CF Center.  CF Centers are given a short amount of time to respond via letter regarding the Committee's findings. (aka, if the Committee states the CF Care Center is losing their accreditation, the Committee lists in the letter why the CF Clinic is losing their accreditation.  The CF Clinic then has some time to write a letter back to the Committee stating their challenges and how the Committee can expect the CF Clinic to respond.

Annual Updates
Since not all CF Clinics are visited yearly, there is an important aspect of accreditation that continues. This is done through "Annual updates." Annual updates are sort of like progress reports from the CF Center to the CF Foundation each year.  Questions are asked regarding the CF Clinic's strengths, weaknesses and challenges.

If the CF Foundation sees a problem with one of these annual updates, the institution will be flagged for an early site visit and the Center Committee is notified.  If there are no problems, the CFF will provide accreditation approval and they stay on their 3-5 year cycle of Accreditation.

So, once a CF Center is Accredited, then what?
So, center sites visited in the previous year are eligible for the "Quality Care Award" based on evidence of "sustained quality improvement resulting in improved outcomes.  The CF Foundation provides recognition of the Center/s who receive this award at the NACF Conference. 

Benefits of Accreditation
The benefits of a CF Care Center being accredited includes:
* Accountability - ensures standards are met

* Ideas for improvement - host centers and site visitors benefit from visits to other CF Care Centers
* Securing resources from institution - when a CF Care Center must meet requirements set forth by the accreditation process, this engaged the institution to support the CF Care Center in meeting these requirements for fear that otherwise, the CF Care Center will not longer be accredited (something that the host institution such as University or hospital would not want to see is the CF Care Center brings patients to its facilities)/
* Public recognition of excellent performers - CF Care Centers can be the pride and joy for awards and their institutions.  They can be model for all other centers.

Here's an example of how well CF Care Centers work for CF patients.  The picture below shows data from CF Care Centers with regard to their patient's FEV1 vs BMI percentile.  In 2002, CF Care Centers were scattered in all four quadtrants.  Some were doing amazing in one area or in the other.  Some were doing amazing in both.  Others were not.  But, as CF Care Centers worked to find solutions, they began to figure out better ways of caring for CF patients.  In 2012, the same data shows that most CF Care Centers were amazing in both areas.  This is the power of working together and fighting for a goal of better health outcomes for CF patients:

Current New Initiatives for Care Center Accreditation
The CF Foundation recently indicated there are several new initiatives for Care Center Accreditation.  They include:
* The Patient and Member Experience Care Survey - already 107 (about 40%) of the 265 CF Care Center programs have participated
* Revising accreditation criteria and bolstering struggling centers (such as allowing for independent pediatric and adult programs - as long as transition in place, relaxing the teaching criteria and allowing referrals for clinical trials to count towards research criteria
* Facilitation greater CF Foundation and core center oversight of affiliates

Slide is from presentation from the CF Foundation's Volunteer Leadership Conference 2015.

New Program for Affiliate CF Care Centers
To facilitate great CF Foundation and Core Center oversight of affiliates, the CF Foundation has recently begun a program called the Targeted Assistance Program (TAP).  This program provides:
* data-driven approach to selection (registry data, experience of care survey data, site visit reports and annual updates, staffing levels)
* intervention team comprised of peer clinician
* reporting to center committee
* improvement plan with timetable
* investment of resources of CF Foundation and the institution

In the slide below, you can see how CF Care Centers are doing in their measurement of patients (6-17 years old) with their FEV1.  Most CF Care Centers (represented by black dots) fall within the mean (represented by the gold line).  However, a few CF Care Centers are doing much better than the mean (see the green dots) and some much worse than the mean (see the red dots).  Note that 5 of the 6 red dots are those CF Care Centers who are CF Care Center affiliates.  This is just one of the reasons why the CF Foundation has put in to place the Targeted Assistance Program.  Nobody wants to go to a CF Care Center well below the mean.

Slide is from presentation from the CF Foundation's Volunteer Leadership Conference 2015.
This blogpost packs in a TON of information.  But I wanted to blog about this process for two reasons.  One, I wanted to blog because this information - information about the CF Care Center Accreditation Process is hard to find.  The CF Foundation's website does not list much, if any, of this information.  I wanted to share it with other CF families.  The second reason I wanted to share is because, as a part of my work with the CF Care Center Redesign, I have realized that while there are SO many wonderful processes in place to help our CF patients get and stay well, there are many aspects of CF care that need to be improved. The Accreditation Process is one of those.

Here are the things I'd like to see about the Accreditation Process improved:
1.) I'd like CF patients/caregivers involved in the accrediting our CF Care Centers.  The patient/caregiver voice is vital to improving CF care.  We need structured and integrated input from CF patients/caregivers when choosing to accredit CF Care Centers.

2.) I'd like more transparency about our CF Care Centers accreditation process.  When CF Care Centers lose their accreditation, it is simply taken off the website.  Passive communication about a CF Center's accreditation or lack thereof cannot help CF patients make informed decisions.  As much as I absolutely *loved* learning about the ins and outs of the CF Care Center process, I was disappointed that I had to be involved knee-deep in a project that the CF Foundation is supporting before I could get access to this extremely beneficial information.  I want information like this to be more accessible for all CF patients/caregivers, not just those involved in particular projects with the Foundation.

3.) Not only do I want to know how my CF Center is doing in the accreditation process, I'd like to know how other CF Care Centers are doing with their accreditation. The CF Foundation gives out Quality Care Awards at the NACFC.  But, the problem with NACFC is it's nearly closed to CF patients and caregivers attending.  So, I would like to know who is winning awards, why and how. Knowing my clinic or other clinics are doing well only helps me better understand the kind of care my child might be receiving at their CF Care Center.

3.) I appreciate the current Accreditation Process, but I'd like a Process that pushes my CF Care Center to go beyond minimal standards.  I am incredibly grateful for the process we currently have in place.  The CFF Accreditation Process helps to assure Bennett is at a CF Care Center that, at minimal, is up to CF standards in his care.  But I want more for Bennett and for all those with CF.  At this point, there is no direct way for CF patients/caregivers to know how their CF Care Center is doing compared to others around the country.   I'd like to see the Accreditation Process adopt some type of higher recognition of CF Care Centers that are providing care beyond the minimal accreditation standards.

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