The impact of transforminghealthcare delivery on cystic fibrosisoutcomes: a decade of qualityimprovement at CincinnatiChildren’s Hospital

Christopher M Siracusa,1 Jeanne L Weiland,1 James D Acton,2

Amitra K Chima,3 Barbara A Chini,1 Andrea J Hoberman,1

J Denise Wetzel,1 Raouf S Amin,1 Gary L McPhail1

1Division of PulmonaryMedicine, Cincinnati Children’sHospital Medical Center,Cincinnati, Ohio, USA2Division of PulmonaryMedicine, University of MissouriHealth System, Columbia,Missouri, USA3Department of ReferralManagement, CincinnatiChildren’s Hospital MedicalCenter, Cincinnati, Ohio, USA

Correspondence toDr Gary L McPhail, Division ofPulmonary Medicine, CincinnatiChildren’s Hospital MedicalCenter, MLC-2021, 3333Burnet Avenue, Cincinnati,OH 45229-3039, USA;gary.mcphail@cchmc.org

Received 26 July 2013Revised 3 October 2013Accepted 4 December 2013

To cite: Siracusa CM,Weiland JL, Acton JD, et al.BMJ Qual Saf 2014;23:i56–i63.

ABSTRACTBackground In 2001, Cincinnati Children’sHospital embarked on a journey to improvehealthcare delivery to patients with cystic fibrosis(CF). Data from the Cystic Fibrosis FoundationNational Patient Registry revealed our below-average clinical outcomes, prompting us toinitiate improvement interventions.Objective To improve clinical outcomes forpatients with CF through a comprehensivequality-improvement approach directed atincreasing patient centredness and improvinghealthcare delivery.Interventions In 2001, we shared our below-average outcomes with patients, families andcare providers. We instituted a quality-improvement steering committee with parentaland hospital leadership, and our data-management support was restructured toprovide real-time clinical data to monitor ourprogress. In 2002, our weekly chart conferencechanged to a prospective planning session andindividualised daily schedules were created forinpatients. In 2003, an influenza vaccinationcampaign was initiated and our infection-controlpractices were redesigned. In 2005, best-practiceguidelines were developed for airway-clearancetherapy. In 2007, evidence-based clinicalalgorithms were designed and implemented andkey care-team members were added.Measurements Primary outcome measureswere median forced expiratory volume in 1 s percent predicted (age range 6–17 years) andmedian body mass index percentile (age range2–20 years).Results From 2000 to 2010, median forcedexpiratory volume in 1 s increased from 81.7%to 100.1% predicted and median body mass

index increased from the 35th to the 55thcentile.Discussion By focusing on specific outcomes,empowering families and patients, effectivelyusing data, and standardising care processes, wetransformed the culture and delivery of care forour patients with CF and learned valuablelessons potentially translatable to other chronic-care providers.

INTRODUCTIONBackgroundChronic-disease outcomes improve whenthe healthcare delivery system providescare that is safe, patient-centred, evidence-based, efficient, timely and equitable.1

Improved outcomes are dependent oncare providers who understand what isknown about the pathophysiology andmanagement of disease and have toolsthat help them be prepared to deliver thecare that each patient needs when theyneed it. Chronic-disease outcomes alsoimprove when patients and families areeducated, informed and activated, therebyunderstanding the basic principles ofdisease, developing skills to minimise theimpact of disease on health, and engagingin ongoing care practices that are product-ive and evidence-based.2

Cystic fibrosis (CF) is a life-shorteninggenetic disease with an incidence ofapproximately 1/3500 births in the USA.Of the over 70 000 patients with CF thathave been identified worldwide, approxi-mately 30 000 of those are in the USA.For over 40 years, the Cystic FibrosisFoundation has compiled data regarding

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patients who receive care in CF centres across thecountry. The median predicted age of survival for chil-dren with CF was less than 32 years in 2000 andincreased to greater than 38 years in 2012. There alsohas been an overall improvement in lung function andnutritional outcomes at the national level, as evi-denced by registry data. Since 2000, there have beensignificant advances in therapy including anti-inflammatory agents and inhaled antibiotics, and earlyrecognition of CF through newborn screening hasbecome a national standard.

Setting and local problemCincinnati Children’s Hospital Medical Center(CCHMC) is a tertiary care pediatric hospital with aCF centre that currently cares for 250 patients withCF, 0–21 years of age. In the period between 2001and 2010, our centre provided care to 394 individualpatients.Prior to 2000, the CF-care team at CCHMC had a

strong existing commitment to deliver the best pos-sible care and had partnered with the institution’sOffice of Clinical Effectiveness. However, availabilityof measurable outcomes was limited. Therefore, ouremphasis primarily was on patient and family satisfac-tion. In 2000, the Cystic Fibrosis Foundation releasedkey outcomes data from the National Patient Registryfor the first time to each centre privately that allowedthe centres to see how they compared with thede-identified outcomes of all other US CF centres.Although this initial data was limited and not publi-cally transparent, for the first time it provided us away to assess our performance and represented animportant step in the evolution of quality improve-ment (QI) in CF care in the USA.At the same time, the emphasis on QI at CCHMC

was growing rapidly, with a charge given to directorsof clinical divisions and services to develop new andinnovative ways to improve outcomes. When seniorCCHMC leadership applied for a Robert WoodJohnson Foundation grant, ‘Pursuing Perfection:Raising the Bar for Health Care Performance’, theCF-care team was invited to participate as the institu-tion’s pilot team for chronic care. This opportunitywas foundational in providing us with guidance inimprovement methods, as well as structure, account-ability and urgency for our improvement effort, all ofwhich accelerated the improvement in care processesand outcomes.When the performance data for CCHMC was

reviewed, it was revealed that the representative pul-monary and nutritional outcomes for our patientswere below average when compared with all other UScentres. Initially, the reports from the National PatientRegistry were limited, with little detail to help identifyspecific opportunities to improve the desired out-comes. Other challenges included identifying othercentres to learn from and sharing performance data

with patients and families in a way that engaged themin the improvement process.Supported by hospital leadership, we committed to

CCHMC’s mission to “deliver demonstrably superiorpatient outcomes and experiences, and discover andapply better ways to improve the health of children.”Operationally, this translated into improving ouraccess and use of data, identifying key components ofCF care that drive the desired outcomes, and engagingall of the partners in CF care—especially patients andfamilies—to design and implement effective changestoward improving CF outcomes.

INTERVENTIONSEthical issuesAll clinical interventions were improvement projects,intended to close a gap in our care-delivery system.We used evidence-based care with assumed directpatient benefit and not requiring informed consent.At the time, Institutional Review Board approval wasnot required or even generally considered for QIwork. Additionally, processes improvement was beingaddressed that did not involve individual patient infor-mation. However, patient privacy was a priority andwas maintained throughout the development andimplementation of the interventions.

Planning the interventionsCare providers and hospital leadership met in thesummer of 2001 for a ‘Visioning Session’ during whichwe envisioned perfect care and decided on some keyareas for improvement. These discussions were initiallyguided by Wagner’s ‘Chronic Care Model’ of disease,2

to ensure that all aspects of chronic-disease managementwere addressed.

Incorporating patients and familiesIn-depth discussions occurred regarding the extent towhich we wanted patients and families involved.Primarily, the team was concerned about ‘airing ourdirty laundry’ and worried that once families heardabout our less-than-average outcomes they would losetrust in their care providers and might choose to seekcare at another CF centre. Another concern was thatincorporating families into the care team might fostera forum for complaints that would distract from theimprovement goals. The team debated having familiesserve as advisors by evaluating projects/processesdesigned by the care team versus having families atthe decision table. Ultimately, it was agreed that fam-ilies were to be partners with the CF-care team andserve on committees as equals, which was quite anovel idea at the time.Several family members who we thought would be

interested in improving care processes received lettersexplaining that there would be an interview processfor selection of participating families. Those expres-sing interest were interviewed, and the candidates

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were reviewed. Thirteen family members ultimatelyjoined the care team, with diversity being an import-ant selection criterion. Family members included werea patient, mothers, fathers and grandparents, andencompassed caregivers for a variety of ages ofpatients. There also was a variety of disease severityrepresented, from new diagnosis to a parent of a childwho had died of CF.

Continuous review of progressSubsequently, a second visioning session was heldwith the families, where they envisioned perfect CFcare. Priorities for improvement work were set, basedon results from the visioning session that includedfamilies rather than the initial visioning session. Allagreed that the priorities of the families needed to bethe initial focus of our work. Task forces and projectswere created and assigned to groups, with teammembers on each project that had specific interests inthat project. Multiple ideas were brought to the table;some were abandoned, a few were attempted andfailed, and several flourished. Each project groupincluded at least one family member representative.Family members were trained by specialists from theIndiana Support Network and Family Voices, usingInstitute for Family-Centered Care principles, andtrained in communication and collaboration withhealthcare professionals.

Learning from other centresIn 2002, the Cystic Fibrosis Foundation shared thenames of the top five best-performing CF centres, andour CF centre met with the top-ranked centres duringthe North American Cystic Fibrosis Conference tolearn about initiatives that they had developed andimplemented, thus sparking further interventions atour institution.In the spring of 2003, key team members from our

Improvement Team, including a parent, visited a top-performing centre to learn about and analyse theirimprovement system and initiatives, which helped ourteam revise planned interventions based on what didor did not work well at that centre. Almost equally

important, this site visit set into motion a culturalchange that began with the motivation of our care-team members to try to make our centre one of thebest in the nation.

Major aims of our interventionsAfter the planning phase was completed, we devel-oped a set of promises related to providing patientswith the best CF care possible (figure 1), and thesepromises became the backbone of the interventions.In general, the major aims of our endeavours includedimproving lung function and nutritional health out-comes for our patients by improving data collectionand utilisation, standardising and redesigning careprocesses, and implementing cultural change. As newprocesses became standard of care, efforts were madeto sustain existing projects and develop new ones.Patients and their families were updated periodicallyon our progress with a newsletter and an eveninglecture series

Specific interventionsBy assessing our local CF-care practices and bench-marking our practices with top-performing CF centresaround the country, we used what we learned in ourvisioning sessions and site visits to initiate QI inter-ventions (figure 2) designed to improve outcomesusing Plan-Do-Study-Act cycles to continually evaluatethe processes.

Collecting and using data more effectivelyAlthough below-average data sparked our initiatives, itwas clear that we had to use data to our advantage.Our CF centre completely revamped our local data-management support to provide us with real-time,trended clinical data in the form of run charts toguide interventions and monitor improvementprogress.In 2002, we changed our weekly chart conference

from a retrospective review of the last week of patients,to a prospective clinic-preparation meeting. Viewinglung function and nutritional data across multiple yearsallowed the care-team members to develop a specificdata-driven action plan for each patient coming intoclinic. Although centre-level data was available annu-ally from the Cystic Fibrosis Foundation, the teamwanted real-time access to our outcomes and hired anapplication specialist to develop an online systemcalled PulmonaryLink for internal data reporting andsharing. This intranet allowed the entire team to viewmonthly population-level data, as well as individualpatient-level data (eventually stratified by risk factors in2010) to drive QI activities and interventions.PulmonaryLink also facilitated active management ofadherence to CF guidelines for care, screening and pre-vention by tracking which patients were due forroutine office visits, pulmonary function tests and bac-terial cultures.

Figure 1 Promises publically made to patient and families thatguided interventions.

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Individualised schedulesIn 2003, as a direct result of discussions at the familyvisioning sessions, individualised daily schedules werecreated for inpatient adolescents. Data on airway-clearance treatments, physical-therapy attendance andschool attendance were collected. Patients who usedthe schedule were more likely to report that their carewas often or always delivered exactly as they expectedand felt that they were involved in care decisions asmuch as they wanted to be. When assessed, 87% ofpatients said using the individualised schedule madetheir stay a little or much better compared with pasthospitalisations.3 This practice remains in place as of2013.

Improving vaccination ratesIn 2003, an Influenza Vaccination Initiative was devel-oped and implemented. The campaign included pre-planning visits, education and reminders to families,standardised order sets, and timely data tracking.There also was follow-up in place for those non-responsive to our initial contact. Within 14 weeks,near-perfect vaccination rates were achieved at ourcentre (data presented at the 2004 North AmericanCystic Fibrosis Conference, Meeks), and these prac-tices remain in place with continued near-perfect vac-cination rates each year.

Infection controlIn 2003, we redesigned our infection-control practicesto decrease patient-to-patient spread of infections.Initiatives were focused on inpatient and outpatientcare settings. Families, care providers and staff wereeducated on up-to-date infection-control practicesguided by the Cystic Fibrosis Foundation, which even-tually became routine. Inpatient adolescents, for atime, became ‘infection control police’, and theyrecorded how well every care provider, from physicianto surgeon to nurse to housekeeper, followed the

infection-control guidelines. Provider awareness ofthis monitoring seemed to contribute to improvedadherence.

Airway clearanceIn 2005, we used QI methodology to develop a seriesof multidisciplinary interventions to improve adher-ence of best-practice airway clearance therapy (ACT)in inpatient adolescents during routine clinical care.After the interventions, quality of ACT significantlyimproved from 21% best-practice ACT at baseline to73% postintervention. Quantity of ACT also signifi-cantly improved, from 41% of days with ACT fourtimes per day at baseline to 64% after 24 months.4

We continued to collect data for an additional12 months and concluded that the interventions weresustainable.

Standardisation of careIn 2007, evidence-based prescribing algorithms weredesigned to reflect consensus recommendations fromthe Cystic Fibrosis Foundation. Clinicians and familieswere educated about the guidelines, and co-leaders ofthis QI work met with each provider (doctor andnurse team) to review their prescribing data. Care pro-viders often were surprised by the number of missedprescribing opportunities. Over time, we trackedadherence to prescribing practices based on the guide-lines using our revamped and fully functioning data-base. Adherence successes and failures werehighlighted at weekly team meetings to promote clin-ician accountability. At the start of the project, therate of clinician adherence to prescribing guidelineswas 62%, which quickly improved to 87% after just3 months.5 We continued to monitor prescribingguideline adherence for 21 months and found it to besustained.

Figure 2 Timeline of initiating events and interventions.

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Adding key team membersIn 2007, in order to facilitate an effective and equit-able care model, a second registered dietician wasadded to the team and a role was created for anairway-clearance specialist that also was hired to jointhe team. In 2008, we embedded a team memberwhose sole responsibility was to QI and outcomes,which was an innovative concept at the time. Theaddition and sustainment of these members to thecare team was vital to the overall success of our QIinitiatives.

Unsuccessful interventionsIt is important to note that there also were attemptedinterventions that were not successful. Early on, in anattempt to revamp our chart conference, we institutedprevisit surveys mailed to families to aid in the prepar-ation of their upcoming visit. The response to thesurveys was minimal, and the project was eventuallydiscontinued. We also attempted to initiate home spir-ometry testing to give us more objective data aboutour patients between clinic visits. However, at thetime, options for home equipment were expensive formost families and unreliable.

OUTCOMESFrom 2000 to 2010, lung function and nutritionalhealth outcomes for patients with CF at CCHMC dra-matically improved. Lung function outcomes, as mea-sured by median forced expiratory volume in 1 s(FEV1) per cent predicted, were determined forpatients aged 6–17 years (between 95 and 118 indi-vidual patients per year) (table 1). FEV1 improvedfrom 81.7% to 100.1% predicted, an absoluteimprovement of 18.4% predicted. Notably, our lung-function outcome in 2010 was well above the national

average and within three percentage points of the 10best-performing CF centres in the country (figure 3A,Source: K Petren, Cystic Fibrosis Foundation NationalPatient Registry).Nutritional health outcomes, as measured by

median body mass index (BMI) percentile, wererecorded for patients aged 2–20 years (between 163and 182 individual patients per year) (table 1). BMIimproved from the 35th centile in 2000 to the 55thcentile in 2010, a 1.7-fold improvement. This rankedus significantly higher than the national average of CFcentres (figure 3B, Source: K Petren, Cystic FibrosisFoundation National Patient Registry); more import-antly, our outcomes were above the 50th centilebenchmark designated by the Cystic FibrosisFoundation as the minimum acceptable BMI forpatients with CF.It is notable to recognise that although health out-

comes measurements for patients with CF across thenation were improving between 2000 and 2010, out-comes at CCHMC that had started far below thenational average in 2000 had approached the top 10centres by 2010.

DISCUSSIONSummaryBy focusing on important clinical outcomes, effect-ively using data, empowering families and patients,and standardising care processes, we transformed theculture and delivery of care for patients with CF atCCHMC to improve lung and nutritional outcomesand also to become a national leader in QI.

Relation to other evidenceThe CF QI journey at CCHMC did not begin in avacuum. As identified by Kaplan and colleagues in a2010 review,6 essential ingredients predictive ofsuccess in healthcare QI were present or developing atCCHMC in 2001, including support from hospitalleadership, data infrastructure, clinician involvementin QI projects and hospital culture.Over the past 15 years, QI literature has concluded

that data and process analysis impact quality perform-ance and hospital leadership has the strongest influ-ence on information systems and analysis, and thatthese impact organisational improvement.7 In add-ition, local clinician leadership and collaborativeinvolvement are a predictor of implementationsuccess.8 A 2003 randomised controlled trial byBerner and colleagues found that having a physicianleader involved in a QI programme improves adher-ence to the recommended interventions.9 Manystudies of organisational culture and QI success havedetermined that creativity, risk taking, stability, atten-tion to detail and collectivism are positively correlatedwith QI success.The CF centre at CCHMC was fortunate to have

many of the organisational elements essential to QI

Table 1 Lung function and nutritional status for patients withCF at the CCHMC CF centre, 2000–2010

FEV1 outcomes(age 6–18 years)

BMI outcomes(age 2–20 years)

YearNumber ofpatients

FEV1 per centpredicted

Number ofpatients

BMIpercentile

2000 115 81.7 167 35.41

2001 114 84.6 164 44.21

2002 106 85.4 172 40.24

2003 105 86.5 164 45.50

2004 95 89.9 163 49.63

2005 108 94.3 169 47.97

2006 115 95.4 179 48.63

2007 118 98.2 181 54.90

2008 115 97.8 175 57.59

2009 117 98.8 182 57.60

2010 114 100.1 178* 55.18

*Denotes age range of 2–19 years for 2010.BMI, body mass index; CCHMC, Cincinnati Children’s Hospital MedicalCenter; CF, Cystic fibrosis.

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success, namely effective communication from seniorleadership, direct involvement of senior leadership inQI efforts, leadership supportive of implementingformal QI instruction, and an organisational cultureready to embrace change.

ConclusionsWe instituted a continuous QI programme across ourCF centre over a decade. CCHMC is a unique clinicalenvironment where QI is now an embedded part ofthe clinical culture. The transformation of our CFcentre was supported by hospital leadership at mul-tiple levels, and initially was funded by an externalgrant. After initial grant funding, our efforts were sus-tained by hospital and divisional financial support.When faced with suboptimal outcomes, our patientsand families remained invested and collaborated withour staff to improve our CF centre. We dedicatedresources to data management support, ensuring

access to up-to-date trended data to guide our QIinterventions.National Patient Registry benchmark outcomes of

FEV1 per cent predicted and median BMI percentileimproved over the decade at our CF centre. This is across-sectional study of centre-level outcomes, not alongitudinal study of individual patient-level out-comes. The ongoing sustainability of our improve-ments is unknown since inevitably there will bepatient and staff turnover from year to year, andtherefore we will continue to track improvements overtime. It is important to note that QI initiatives remaina strong focus of our CF centre and our hospital as awhole, and we are constantly striving towards ourinstitution’s doctrine to ‘change the outcome’ andimprove the health of our patients. QI educationbecame a main priority at CCHMC, to build improve-ment capability at all levels of leadership. Executive,division-level and care-team leadership engaged in

Figure 3 Cystic fibrosis (CF)-outcome improvement over a 10-year period, 2000–2010. (A) Forced expiratory volume in 1 s (FEV1)per cent predicted and (B) Body mass index (BMI) percentile for the CF centre at CCHMC, Cincinnati Children’s Hospital MedicalCenter (CCHMC) in comparison with the national average and the 10 best-performing CF centres nationally.

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formal, structured courses focused on developing thecapability to understand improvement science andapply QI methodologies.It is difficult to measure a change in care culture, as

it is essentially an overall shift in attitude and ideals.From the board of directors to the providers, patientsand families, all initiatives and care practices began tofocus around one central theme: improving healthoutcomes by using a family-centred approach. Wechanged our care model and gave patients and theirfamilies a greater say in care decisions, and familiesbecame more invested in changing the outcomes, fortheir child, and for the overall patient population.The number of patients involved in research at ourCF centre was minimal in 2000, but by 2010 almost25% of our patients were involved in research studies.Before 2000, like other CF centres, our healthcare

team was striving to provide good care for our patientswith CF, and we presumed that we were doing so.However, with the new data shared by the CysticFibrosis Foundation, we realised that our good inten-tions and hard work were not resulting in health out-comes that were up to the national average. It tookcourage to face these facts and not make excuses. Atthe beginning of the decade, we had a vision of whatwe wanted to achieve at our centre, though did not yetknow what means were necessary to reach our goal.During our decade of improvement, we learned

several valuable lessons (figure 4). It is important tonote that these experiences are not necessarily specificto CF and likely can be translated to other chronic dis-eases. For example, our influenza vaccination cam-paign was so quickly successful that it was translatedto other at-risk populations with similar improve-ments in vaccination rates.10

It is significant to point out that CF health outcomeswere, and are, continuing to improve at a nationallevel. With the advent of new therapies and improve-ment of older therapies, patients are doing better thanthey had in past years. Another potential influence onour centre over the decade was the implementation ofthe newborn CF screening programme that started in2006 in Ohio. Early recognition and treatment of CFmay have contributed to our outcomes.

Throughout the process, there were barriers thathad to be overcome for the improvement process tosucceed. Initially, we encountered some teammembers, including those in leadership positions,who did not appreciate the value of QI work.However, sharing the data in a transparent mannerhelped to bring everyone on board. In addition, wesometimes overextended our resources, initiating toomany QI projects at once and underscoring theimportance of having team members with dedicatedtime for QI work. Having patients and familiesinvolved maintained motivation of the care team.Finally, it was important to celebrate achievementsthroughout the process to sustain morale andenthusiasm.Our QI initiatives were effective at improving the

health outcomes of patients at our CF centre andcontributed to the reputation that CCHMC has as anational leader in QI. Data transparency, parent andfamily involvement, data-driven initiatives, and amotivated local QI team were essential features ofour QI programme. QI methodology is effective forimproving healthcare delivery, and changing ourhealthcare delivery system quickly improved our CFoutcomes and transformed our culture of patientcare.

Acknowledgements The authors are indebted to JimAnderson, Thomas Boat, Lee Carter and Uma Kotagal fortheir long-term dedication to quality improvement, the staffof the Cystic Fibrosis Center at Cincinnati Children’sHospital Medical Center, and the patients and families whocontinue to participate in our improvement journey. Theauthors thank Maria Britto, Terri Byczkowski and GerryPandzik for their invaluable support and insights. Theauthors are indebted to Don Berwick, Tom Nolan andLloyd Provost whose passion and expertise in improvementwere critical during our journey. Thanks to Yuping Guo,Laurie Kahill and Kathy Sebastian for data/registry support.The authors also thank J P Clancy, Justin Brockbank andGreg Ogrinc for critical review of the manuscript. Theauthors are grateful to Terri Schindler and Robert Wilmottfor their leadership in early years of the work and toGinger Browning, Ed Conway, Monica Chapman, GeriDinkins, Kathy Dressman, Michelle Ernst, Connie Meeks,Karen Montag, Teresa O’Hara, Adrienne Prestridge, JackieTaylor and Jamie Wooldridge for their dedication toimprove care. The authors’ work would not have sustainedmomentum without the voices of Tracy Blackwelder,Kimberly Cook, Jim Lang, Honor Page and the otherpatients and families who gently reminded them that ‘theclock is ticking’ and that their work could not slow downbecause it directly impacted the lives of their children. Theauthors would like to thank the Cystic Fibrosis Foundation,as an integral part of their story from the beginning, andspecifically Bruce Marshall, Kathy Sabadosa and DavidStevens for helping promote their work and fostering thedevelopment of this supplement.

Contributors CMS: analysis and interpretation of data,primary author drafting and revising the article critically forimportant intellectual content, and final approval of theversion published. JLW: conception and design, acquisition ofdata, analysis and interpretation of data, drafting and revisingthe article critically for important intellectual content, andfinal approval of the version published. JDA: conception anddesign, acquisition of data, analysis and interpretation of data,drafting and revising the article critically for importantintellectual content, and final approval of the version

Figure 4 Lessons learned during decade of qualityimprovement (QI) process.

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published. AKC: conception and design, acquisition of data,analysis and interpretation of data, revising the articlecritically for important intellectual content, and final approvalof the version published. BAC: acquisition of data, analysisand interpretation of data, drafting and revising the articlecritically for important intellectual content, and final approvalof the version published. AJH: acquisition of data, analysisand interpretation of data, drafting and revising the articlecritically for important intellectual content, and final approvalof the version published. JDW: analysis and interpretation ofdata, drafting and revising the article critically for importantintellectual content, and final approval of the versionpublished RSA: conception and design, acquisition of data,analysis and interpretation of data, revising the articlecritically for important intellectual content, and final approvalof the version published. GLM: acquisition of data, analysisand interpretation of data, drafting and revising the articlecritically for important intellectual content, and final approvalof the version published.

Funding Funding for these projects was provided by theDivision of Pulmonary Medicine at Cincinnati Children’sHospital and through a Pursuing Perfection “Advancing thequality of health care for children and adolescents” grant by theRobert Wood Johnson Foundation (grant number 45413).

Competing interests All authors report grant funding from theRobert Wood Johnson Foundation. GLM reports personal feesfrom Gilead Sciences Advisory Board and from VertexPharmaceuticals Advisory Board outside of the submitted work.CMS reports grant funding from the Cystic Fibrosis Foundationoutside of the submitted work. All other authors report noother competing interests.

Ethics approval Ethics approval was not required by our localinstitution. The goal of this project was an ethical imperative, toimprove healthcare delivery and patient outcomes. Patients werenot required to undergo additional testing. Health outcomesimproved in our center by improving healthcare delivery.Patients/families consented for their clinical data to be includedin the CF Registry and to be used in research.

Provenance and peer review Not commissioned; externallypeer reviewed.

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