downloaded from on october ... · pdf filefrom 2006 to 2007, the paediatric benchmarking team...

Key findings of the US Cystic FibrosisFoundation’s clinical practicebenchmarking project

Michael P Boyle,1 Kathryn A Sabadosa,2 Hebe B Quinton,2

Bruce C Marshall,3 Michael S Schechter4

▸ Additional material ispublished online only. To viewplease visit the journal online(http://dx.doi.org/10.1136/bmjqs-2013-002369)

1Department of Medicine, JohnsHopkins University School ofMedicine, Baltimore,Maryland, USA2The Dartmouth Institute forHealth Policy and ClinicalPractice, Lebanon,New Hampshire, USA3Cystic Fibrosis Foundation,Bethesda, Maryland, USA4Department of Pediatrics,Virginia CommonwealthUniversity, Richmond,Virginia, USA

Correspondence toDr Michael P Boyle, Division ofPulmonary and Critical CareMedicine, Johns Hopkins,1830 E Monument Street,5th floor Baltimore, MD 21205,USA; [email protected]

Received 27 July 2013Revised 6 December 2013Accepted 13 December 2013

To cite: Boyle MP,Sabadosa KA, Quinton HB,et al. BMJ Qual Saf 2014;23:i15–i22.

ABSTRACTBenchmarking is the process of using outcomedata to identify high-performing centres anddetermine practices associated with theiroutstanding performance. The US Cystic FibrosisFoundation (CFF) Patient Registry contains centre-specific outcomes data for all CFF-certifiedpaediatric and adult cystic fibrosis (CF) careprogrammes in the USA. The CFF benchmarkingproject analysed these registry data, adjusting fordifferences in patient case mix known toinfluence outcomes, and identified the top-performing US paediatric and adult CF careprogrammes for pulmonary and nutritionaloutcomes. Separate multidisciplinary paediatricand adult benchmarking teams each visited 10CF care programmes, five in the top quintile forpulmonary outcomes and five in the top quintilefor nutritional outcomes. Key practice patternsand approaches present in both paediatric andadult programmes with outstanding clinicaloutcomes were identified and could besummarised as systems, attitudes, practices,patient/family empowerment and projects. Theseincluded: (1) the presence of strong leadershipand a well-functioning care team working with asystematic approach to providing consistent care;(2) high expectations for outcomes amongproviders and families; (3) early and aggressivemanagement of clinical declines, avoidingreliance on ‘rescues’; and (4) patients/familiesthat were engaged, empowered and wellinformed on disease management and itsrationale. In summary, assessment of practicepatterns at CF care centres with top-quintilepulmonary and nutritional outcomes providesinsight into characteristic practices that may aidin optimising patient outcomes.

BACKGROUNDIn an effort to optimise care for indivi-duals with cystic fibrosis (CF), the US CFFoundation (CFF) has established anational network of over 200 care

centres that all contribute data to anational CFF patient registry (CFFPR).This registry contains detailed informa-tion on each individual CF centre’s treat-ment practices, patient demographics,and pulmonary and nutritional outcomesdating back to the mid 1980s.1 2 Whilethe initial intent of the CFFPR was toobtain descriptive information on thepopulation of individuals with CF, itquickly became evident that much couldalso be learned about CF care centresthemselves. There was significant variabil-ity in routine clinical practices amongcare centres, including those for whichstandardised treatment practice guidelineshad been established.1 In addition, evenafter adjustment for differences in patientdemographics, socioeconomic status andother uncontrollable variations in casemix,3 there were significant disparitiesbetween centres in key patient outcomessuch as lung function and nutritionalstatus.3 Previous analysis using theCFFPR had also noted that being caredfor at a ‘top 10’ CF centre resulted in an∼7 year longer survival compared withreceiving care at all other CF care centresin the network.4

While initially disconcerting, this signifi-cant variability in practice patterns andoutcomes between CF centres offered agreat opportunity to identify clinical prac-tices associated with best CF outcomes.One method for potentially identifyingthese key clinical practices was ‘bench-marking’—that is, utilising outcome datato identify top-performing centres, andthen comparing practice patterns at thosecentres with all other centres. This strat-egy has been used for decades in businessadministration to identify best practicesand encourage spread of those practicesthroughout an organisation.5 Systematic

SUPPLEMENT

Boyle MP, et al. BMJ Qual Saf 2014;23:i15–i22. doi:10.1136/bmjqs-2013-002369 i15

group.bmj.com on October 26, 2015 - Published by http://qualitysafety.bmj.com/Downloaded from

http://dx.doi.org/10.1136/bmjqs-2013-002369



http://crossmark.crossref.org/dialog/?doi=10.1136/bmjqs-2013-002369&domain=pdf&date_stamp=2014-3-6

http://qualitysafety.bmj.com/

http://group.bmj.com

use of benchmarking strategy to identify best practicesin clinical healthcare has been a more recent develop-ment however.6

A benchmarking analysis has transformed CF careonce in the past. In a 1988 publication, Corey et al7

contrasted nutritional indices and survival in Bostonversus Toronto between 1972 and 1981 and showedsuperior height, weight and survival in Toronto,where the traditional restriction of dietary fat hadbeen replaced by an alternative approach encouraginghigh-fat and high-calorie feeding. This classic paperwas instrumental in changing nutritional practicethroughout the CF community by drawing attentionto the advantage of the Toronto approach.More than a decade later, two analyses of data from

the Epidemiologic Study of CF (ESCF) identified carecentres with lung function in the highest quartile andcompared reported care practices at those centres withthose in the lowest quartile. Johnson et al8 reportedthat high-quartile sites performed more clinic visits,spirometry and airway cultures across all age groups,as well as more and longer courses of intravenousantibiotics. A separate study that focused on the careof young children found that centres in the highestquartile for lung function in 6–8-year-olds performedmore airway cultures and prescribed more oralcorticosteroids.9

While registries such as the CFFPR and ESCF canbe very effective for identifying which centres haveoutstanding outcomes, they are limited in their abilityto allow identification of practice patterns associatedwith best outcomes. Only variables available in thedatabase can be studied, and the majority of dailypractices and attitudes that characterise a successfulcare team are not captured. Deeper insights are poten-tially available if investigators make more extensiveexplorations of processes by physically visiting high-achieving centres.10

In an effort to systematically document clinical prac-tices resulting in the best outcomes for individualswith CF, the CFF organised investigative ‘benchmark-ing teams’ made up of representatives from differentdisciplines and different CF care centres to visit top-performing centres. Separate adult and paediatricbenchmarking teams were created, as most CF centreshave separate multidisciplinary paediatric and adultcare clinical teams (‘programmes’) with expertise andunique practice patterns suited for their patient group.After assessing outcome data from the CFFPR to iden-tify appropriate sites, these benchmarking teamsvisited the top-performing paediatric and adult careprogrammes and used a combination of question-naires, interviews and observation to thoroughlyexplore clinical care processes at benchmarkprogrammes.The purpose of this article is to (1) describe the

methods used to determine top-performing pro-grammes, conduct benchmarking visits, and assess

practice patterns and (2) identify and discuss thekey practices and treatment approaches shared by CFprogrammes with exceptionally good clinicaloutcomes.

METHODS FOR SELECTION OF TOP-PERFORMINGPROGRAMMES FOR BENCHMARKING VISITSWe used CFFPR data to separately identify the paedi-atric and adult CF programmes caring for 40 or morepatients with consistently outstanding pulmonary andnutrition outcomes over the 5-year period from 2001to 2005. Pulmonary and nutritional outcomes wereselected, as they are key parameters in CF carebecause of their association with survival and qualityof life.11 12 Corrected median forced expiratoryvolume in 1 s percent predicted (FEV1%) was used asthe primary pulmonary outcome measure for bothpaediatric and adult CF programmes, and body massindex percentile (BMI%) and body mass index (BMI)were used as primary nutritional outcomes for paedi-atric and adult care programmes, respectively.13 Tocontrol for differences between programmes inpatient demographics that are known to affect out-comes, programme measures were case-mix-adjustedfor age, gender, use of pancreatic enzymes, medianfamily income and race/ethnicity.3 Paediatric analysisincluded examination of outcomes by separate agestrata: ages 2–11, 6–12 and 13–17. Corrections werealso made for the adult programme analysis to adjustfor the effect of paediatric care in years before transi-tion. Further details on methods used to assess andselect top-performing programmes are available in theonline supplementary appendix.The final product for both paediatric and adult ana-

lyses was an ordered ranking of CF programmes bycorrected outcome for each of the previous 5 years(figures 1–3). We then selected paediatric and adultprogrammes that were consistently in the top quintilefor either pulmonary or nutritional outcomes over theentire 5 year period. From this list, we chose pro-grammes of different sizes and geographic location, toensure a representative sampling, and programmeswith stable staffing over the previous 5 years, to ensurethat current practices reflected those during theassessed time period. A total of 20 care programmeswere selected for benchmarking visits: 10 paediatricand 10 adult, with five in each age group in the topquintile for pulmonary outcomes and five in the topquintile for nutritional outcomes (figures 1–3).

METHODS FOR ASSESSING PRACTICE PATTERNSAT BENCHMARKING VISITSSeparate paediatric and adult teams of CF expertswith training in systems-oriented approaches to carewere formed. Each of these benchmarking teams con-sisted of six members from different CF care pro-grammes, including a physician, nurse, dietician,respiratory therapist, social worker and CF parent.

Supplement

i16 Boyle MP, et al. BMJ Qual Saf 2014;23:i15–i22. doi:10.1136/bmjqs-2013-002369




From 2006 to 2007, the paediatric benchmarkingteam visited the 10 selected paediatric programmes,and the adult benchmarking team visited the 10 adultprogrammes. At each site visit, the benchmarkingteam was accompanied by a volunteer multidisciplin-ary team from a CF care programme that expressedan interest in visiting a high-performing programme(called the ‘visiting team’). To aid in identification of

key treatment practices, a comprehensivesystems-oriented questionnaire evaluating details ofclinical practice was completed by the hostprogramme.Programme visits generally lasted 24 h, and began

with a preclinic dinner during which the host teamwould be asked standard questions by the participantsto aid in identification of key treatment practices.

Figure 1 Median corrected forced expiratory volume in 1 s percent predicted (FEV1%) of children age 6–12 at US Paediatric CarePrograms, 2004. Each bar represents a separate paediatric care programme caring for more than 50 patients. Best quarterly FEV1

for each patient used, with FEV1 adjusted for differences among programmes in patient age, gender, use of pancreatic enzymes,race/ethnicity, and income from zip code. Those programmes highlighted in red represent sites where paediatric respiratorybenchmarking visits occurred. Multiple age strata and results over 5 years were used in selecting sites.

Figure 2 Median corrected forced expiratory volume in 1 s percent predicted (FEV1%) of adults >24 years of age at US Adult CarePrograms, 2005. Each bar represents a separate adult care programme caring for more than 40 patients. Lung transplant patientscensored. Best annual FEV1 for each patient used, with FEV1 adjusted for differences among programmes in patient age, gender, useof pancreatic enzymes, race/ethnicity, income from zip code, and FEV1 7 years ago. Those programmes highlighted in yellowrepresent sites where adult respiratory benchmarking visits occurred.

Supplement





Teams would compare programme-specific registryreports of clinical practices and focus on differencesin their approaches. This discussion would lead to thedevelopment of hypotheses regarding practice differ-ences and set a framework for observations in clinic.During clinic, team members were paired by disciplineto observe and discuss care strategies. The parent rep-resentative interviewed patients and families. A hos-pital visit was made which focused on the processes ofinpatient care. When possible, the benchmarking andvisiting teams sat in on host team meetings to observeinteractions among team members. At the conclusionof the programme visit, benchmarking and visitingteam members met and first individually summarisedtheir conclusions about unique practice patterns. Thebenchmarking team then developed a consensus onthe key practice patterns and approaches from theprogramme and listed them in a summary of the visit.As a final tool to aid in identifying key CF clinical

practices associated with outstanding outcomes, hostcare programmes subsequently completed a 65 ques-tion survey based on initial observations of practicepatterns from programme visits and their responseswere compared with those from low-performing careprogrammes across the USA.

FINDINGS FROM BENCHMARKING VISITS ON KEYPRACTICE PATTERNS OF HIGH-PERFORMINGPROGRAMMESThere were five key practice patterns and approachesidentified in both paediatric and adult programmeswith outstanding clinical outcomes. These can be

summarised as systems, attitudes, practices, patient/family empowerment and projects (SAPPP) (box 1).

SystemsSystems at high-performing programmes were usuallycharacterised by the presence of a programme directorand clinic coordinator with strong leadership skillsand a dedicated and experienced multidisciplinarycare team. At preclinic meetings and during clinic,these teams demonstrated positive team dynamics,including good communication and cooperationamong team members, and usually had adequate teampersonnel levels compared with national averages.Visiting teams noted that delivery of treatment wasstreamlined and efficient: responsibilities were clear,with little ‘falling through the cracks’; team memberscould anticipate and support what recommendationswould be made; decisions were likely to be made andcommunicated without delay; and patients and fam-ilies could be effectively and consistently educated byteam members about the rationale for treatments. Theadult benchmarking team noted a history of close tiesbetween paediatric and adult caregivers. Anotheraspect of systems at these high-performing pro-grammes was a clinical organisation that permittedclose tracking of patient clinical details and outcomes.Finally, top-performing programmes used telephonecontact as a key part of their management strategy:staying in close contact with patients and families,advancing care without always requiring a clinic visit,and being readily accessible by phone to allow rapidengagement with the care team at times of healthconcerns.

Figure 3 Median corrected body mass index (BMI) of adults >24 years of age at US Adult Care Programs, 2005. Each barrepresents a separate adult care programme caring for more than 40 patients. Lung transplant patients censored. BMI adjusted fordifferences among programmes in patient age, gender, use of pancreatic enzymes, race/ethnicity, income from zip code, and BMI7 years ago. Those programmes highlighted in yellow represent sites where adult nutritional benchmarking visits occurred.

Supplement





AttitudesAttitudes were characterised by high expectations forwhat was achievable and acceptable pulmonary ornutritional status. Top-performing programmes almostuniformly described having a low threshold for treat-ing any decline from baseline. This attitude wasreflected both in the clinical team approach and in theattitudes of patients and families. Programmes bench-marked for outstanding BMI endorsed the attitudethat nutritional status was just as important anoutcome measure to follow as FEV1, and consistentlydiscussed strategies for gaining weight at clinic visitswith all patients who were below the target BMI iden-tified by CFF consensus guidelines.14 Programmesbenchmarked for FEV1 articulated a willingness totreat with antibiotics after only a few days of persist-ent symptoms and downplayed concerns about devel-opment of antimicrobial resistance. The paediatricbenchmarking team frequently found an attitude bestdescribed as ‘intentional consensus’—value placed ontrying to develop a standard approach to care thatwould be used by all providers at the clinic. This

standard approach was usually arrived at throughformal meetings designed to develop consensus.

PracticesPractices that were common among programmes withoutstanding outcomes included having a preclinicmeeting or assessment of patients. Teams noted thatreviewing clinical details and formulating treatmentplans before clinic prevented missing importantfollow-up issues during the rush of clinic. Another fre-quently used strategy in high-performing programmeswas involving patients in their care by regularly givingthem feedback on their outcomes. One common way ofdoing this was by sharing a graph (for instance, of FEV1

or BMI), growth chart or picture (such as chest CT). Inaddition, high-performing programmes endorsed morefrequent follow-up visits as a particularly effective strat-egy to address specific areas of concern, encourageadherence, and provide accountability. Recognising thedesirability of a prompt response to small changes inclinical status, these programmes were likely to have pol-icies that facilitated seeing patients at short notice ifneeded. When patients were seen in clinic, all teammembers, especially dieticians and physical and respira-tory therapists, were likely to see the patients—ratherthan just ‘as needed’. This helped to reinforce the essen-tial basics of CF care at each visit rather than only focus-ing on problem issues.

Patient/family engagement and empowermentThe paediatric team consistently found that patientsand families at the benchmarked programmes wereengaged and empowered and were seen as active par-ticipants on the care team. They tended to be wellinformed on disease management and its rationaleand were taught to have high expectations.Specifically, they understood when it was appropriateto contact the CF programme, and furthermore theycould anticipate what actions would be taken whenthey called or were seen in clinic. Their expectationsprovided additional assurance that they would receivean appropriate response in a timely manner. Parentsof paediatric patients often participated in an advisorycapacity at high-performing paediatric programmes orwere engaged in development and conduct of familyeducation and support groups.High-performing adult care programmes also

encouraged their patients to be active participants intheir healthcare decisions and view themselves as partof their care team. Adult programmes were less likelyto have adult patients involved in development andconduct of education and support groups, citinginfection-control concerns as a limiting factor. Manyof these programmes endorsed instead the practice ofregularly engaging their patients outside of clinicthrough the use of listservs or simple emails.

Box 1 Key characteristics of programmes with top-quintile cystic fibrosis clinical outcomes

Systems1. Strong leadership2. Dedicated multidisciplinary team3. Easy accessibility by patients and families4. Close tracking of clinical details and outcomesAttitudes1. High expectations for pulmonary and nutritional

status2. Low threshold for vigorous treatment of health

declines3. Aggressive use of antibiotics for pulmonary symptoms4. Team consensus on standard approach to carePractices1. Preclinic review of patients and treatment planning2. More frequent clinic visits for identified health

concerns3. Regular patient visits with full multidisciplinary teamPatient/family engagement and empowerment1. Patients provided with data on their clinical outcomes2. Patients/families educated on high outcome expecta-

tions and need for early, aggressive intervention fordeclines

3. Patients/families encouraged to provide feedback ontheir clinical care experiences and concerns

Projects1. Self-assess programme outcomes and practice

patterns2. Develop projects to improve programme performance

of key clinical practices

Supplement





ProjectsProjects to improve delivery of care were often foundin the benchmarked adult programmes. These projectswere usually a result of a culture of ongoing self-assessment that led to identification of programmeshortcomings, accompanied by a determination toimprove on these shortcomings. Many of these pro-jects were informal, but others included careful ana-lysis of outcomes and practice patterns to identifyareas in need of improvement. While some of theseprojects focused on improving clinical outcomes suchas nutritional status, others focused on optimisingdelivery of care (such as following treatmentguidelines).

BENCHMARKING FOLLOW-UP SURVEYMany of the conclusions about key attitudes and prac-tices observed in benchmarked centres were con-firmed in a post-benchmarking survey taken by alarger group of adult programmes identified to be inthe top and bottom national quartiles for FEV1 andBMI. The responses provided further objective evi-dence that centres with best clinical outcomes aremore likely to intervene early and aggressively fordeclines in health. Top-quartile programmes for FEV1

were statistically significantly more likely to start earlyantibiotics for persistent respiratory symptoms (3.7 vs8.7 days), use antibiotics to treat ‘common cold symp-toms’, and not be afraid that antibiotic use would‘lead to development of resistance’. A similar aggres-sive approach was noted in programmes with bestnutrition outcomes: top-quartile programmes for BMIscored significantly higher for agreeing with the state-ment ‘small declines in weight or BMI prompt imme-diate reaction in our program’.

DISCUSSIONOne of the advantages of a well-constructed patientregistry such as the CFFPR is the opportunity it offersto compare outcomes and practice patterns across careprogrammes. Significant variability between pro-grammes suggests differences in the efficiency ofdelivery of care and offers the opportunity to gainknowledge of achievable outcomes and the care prac-tices associated with best outcomes. Benchmarkinghas potential to aid in the transformation of caredelivery by allowing caregivers to: learn new ways ofworking from those who have achieved excellence;share knowledge about overcoming common pro-blems; set realistic targets for improvement; anddevelop a culture of willingness to learn from outsideone’s own programme.15

The findings of the CFF’s paediatric and adultbenchmarking teams on the practices, patterns andattitudes that characterise high-performing CF pro-grammes were remarkably similar in that they bothfound several ‘signature themes’. One theme was thepresence of an efficiently functioning care team

working with a well-thought-out systematic approachto providing consistent care. Some specific strategiessupporting this theme included preclinic preparationto ensure ideal use of clinic time and avoid overlook-ing essential details of care, and extensive use of thetelephone to make the team (a) capable of rapidlyinstituting care plans and (b) readily accessible topatients. Additional signature themes at benchmarkedcentres included high expectations for outcomesamong providers and families and early and aggressivemanagement for declines. This meant avoiding reli-ance on ‘rescues’ for treatment, but instead makingearly use of antibiotics or nutritional interventionsupon any sign of decline. This approach was alsocharacterised by increased frequency of clinic visits inpatients with pulmonary or nutritional declines.Another signature theme was patients/families whowere engaged, empowered and well informed ondisease management and its rationale. Centres workedto engage patients and families as care partners byproviding them with feedback tools such as graphs orimages to track their own outcomes. The adult bench-marking team also noted that many high-performingprogrammes had a culture of ongoing self-assessmentthat led to identification of programme shortcomingsand development of projects to improve performance.Although not easily quantifiable, high-performance

teams usually demonstrated a pride and enthusiasmfor their work that was readily apparent to visitingteams. This would be consistent with previous obser-vations by Huber and colleagues that a positiveworking environment and professional satisfactionwere fundamental characteristics of high-performancehealthcare teams.16 While fostering a strong teamidentity, high-performance programmes also encour-aged development of individual expertise and profes-sional success for each team member.In addition to educating about characteristics of

high-performance CF care teams, the CFF bench-marking project also imparted lessons for futurehealthcare performance assessments. One aspect ofthis project that worked particularly well and shouldbe considered for future healthcare benchmarkingprojects was the use of a multidisciplinary team tocarry out the benchmarking visits. Pairing of care-givers within specialties allowed focus on specificareas of unique practice and expertise. The presenceof a multidisciplinary team also encouraged greateranalysis of the positive intra-team dynamics that wereusually so apparent at high-performing programmes.One other strategy that worked well in this project

but could be an even greater emphasis in future pro-jects was the ongoing development of hypothesesabout key practices associated with outstanding out-comes. By continually formulating a cumulativehypothesis of key practices, each successive bench-marking visit can offer an independent opportunity totest validity.

Supplement





One cautionary note that must be highlightedregarding benchmarking is the importance of develop-ing a valid process to identify high-performance pro-grammes. For CF this required using case-mixadjustment for differences in the distribution of demo-graphic determinants of outcomes including age, eth-nicity, pancreatic status and socioeconomic status.3

Along with case-mix issues, there is the challenge ofagreeing on and determining the best measures of per-formance.4 Finally, comparisons of adult programmesmust take into account the fact that they inherit differ-ent starting baselines of disease status from theirfeeder paediatric programme practices. This bench-marking project attempted to utilise the most rigorousmethods available for identifying top-performing pro-grammes and control for differences between pro-grammes in patient case mix.As rigorous as the initial statistical analysis was for

identifying top-performing programmes, one thingthat we would do differently in future benchmarkingprojects would be to use more rigorous methods ofqualitative analysis to evaluate the benchmarking visitsthemselves. Conclusions from visits were drawn byfirst having each benchmarking team member indi-vidually make a list of observed practice patterns, andthen utilising a team meeting to present findings andreach consensus on key practices. More rigorousqualitative research methodologies, including formaltaped interviews and analysis of transcripts, wouldfurther strengthen conclusions for future projects.The ultimate goal of healthcare benchmarking is

assimilation of identified key practices throughout thehealthcare community. This may be done individuallyby single programmes performing self-assessment forkey practices and instituting change as needed, orthrough organised small-group, quality-improvement,learning collaboratives that provide support for pro-gramme self-assessment and continuous improvement.These strategies have led to measurable improvementsin outcomes at numerous CF care programmes, andcan be a model for the CF community as we seek tocontinue to improve clinical outcomes in upcomingyears.17–21

One unique model of group improvement is theGerman CF Quality Assurance project, which has spe-cifically aimed to develop clinical goals for its partici-pating programmes based on benchmarks derivedfrom registry data.22–25 Quality indicators were selected(airway cultures free of Pseudomonas aeruginosa, nutri-tional measures, lung function, and lack of seriouscomplications). During two annual conferences, thehighest-ranking programmes for these indices pre-sented their treatment strategies, and the ensuing dis-cussions led to the identification of clinical practicesthat programmes would aspire to adopt.23

Efforts to improve CF outcomes through the devel-opment of new therapeutics will likely always be afocus of the CF caregiver community. But the findings

of this benchmarking project offer the CF communityadditional potential avenues for improving clinicaloutcomes by optimising delivery of currently availabletherapies by adapting key attitudes and practices. Withthe emerging development of CF registries allowingidentification of programmes worldwide with outstand-ing outcomes, the door is just opening to the possibilityof international comparisons and efforts for identifyingand sharing effective approaches to CF care.

Acknowledgements Members of the paediatric benchmarkingteam: Stacy Bichl, APN-CPNP, Ann & Robert H. LurieChildren’s Hospital of Chicago, Chicago, IL, USA; AmandaLeonard, MPH, RD, CDE, Johns Hopkins University School ofMedicine, Baltimore, MD, USA; John Nash, LMSW, AlbanyMedical Center, Albany, NY, USA; Kathleen Richards, RRT,RCP, Primary Children’s Medical Center, Salt Lake City, UT,USA. Members of the adult benchmarking team: Julie Haas,RD, CD, Medical College of Wisconsin, Milwaukee, WI, USA;Karen Hollen, MSW, CSW, University of Kentucky, Lexington,KY, USA; Mary Lester, RRT, RCP, Medical University of SouthCarolina, Charleston, SC, USA; Christine Singh, MSN, CNP,Akron Children’s Hospital, Akron, OH, USA.

Contributors MPB performed the study, collected and analyseddata, and drafted and revised the manuscript. He is theguarantor. KAS and BCM helped design and perform the studyand reviewed and approved the manuscript. HBQ helped withstudy design, performed the data analysis, and reviewed andapproved the manuscript. MSS performed the study, collectedand analysed data, and drafted and revised the manuscript.

Funding US Cystic Fibrosis Foundation (CFF BOYLE09QI0).

Competing interests None.

Provenance and peer review Not commissioned; externallypeer reviewed.

REFERENCES1 Cystic Fibrosis Foundation. Cystic Fibrosis Foundation Patient

Registry, 2011 Annual Data Report. Bethesda, Maryland, 2012.2 FitzSimmons SC. The changing epidemiology of cystic fibrosis.

Journal of Pediatrics 1993;122:1–9.3 O’Connor GT, Quinton HB, Kahn R, et al. Case-mix

adjustment for evaluation of mortality in cystic fibrosis. PediatrPulmonol 2002;33:99–105.

4 Quinton H. Using data to identify opportunities for changeand to monitor progress. Pediatr Pulmonol 2004;38(S27):124–1255.

5 Herman DR, Dangler TL, Houser DA, et al. Lewis TG,Masten JL, Taylor IE. The critical phase inspection process:a benchmarking study in search of industries’ best practices.Quality Assurance (San Diego, Calif ) 1993;2:186–90.

6 Mohr JJ, Mahoney CC, Nelson EC, et al. Batalden PB,Plume SK. Improving health care, Part 3: clinical benchmarkingfor best patient care. Jt Comm J Qual Improv 1996;22:599–616.

7 Corey M, McLaughlin FJ, Williams M, et al Levison H. Acomparison of survival, growth, and pulmonary function inpatients with cystic fibrosis in Boston and Toronto. J ClinEpidemiol 1988;41:583–91.

8 Johnson C, Butler SM, Konstan MW, et al. Morgan W,Wohl ME. Factors influencing outcomes in cystic fibrosis:a center-based analysis. Chest 2003;123:20–7.

9 Padman R, McColley SA, Miller DP, et al. Infant care patternsat epidemiologic study of cystic fibrosis sites that achievesuperior childhood lung function. Pediatrics 2007;119:e531–7.

Supplement





10 Johnson JK, Mahoney CM, Nelson EC, et al. Batalden PB,Plume SK. Learning from the Best: Clinical Benchmarking forBest Patient Care. In: Nelson EC, Batalden P, Lazar JS, eds.Practice-based learning and improvement: a clinical improvementaction guide: Joint Commission Resources; 2007:65–80.

11 Liou TG, Adler FR, Fitzsimmons SC, et al. Cahill BC,Hibbs JR, Marshall BC. Predictive 5-year survivorship modelof cystic fibrosis. Am J Epidemiol 2001;153:345–52.

12 Sawicki GS, Rasouliyan L, McMullen AH, et al. Longitudinalassessment of health-related quality of life in an observationalcohort of patients with cystic fibrosis. Pediatr Pulmonol2011;46:36–44.

13 Borowitz D, Baker RD, Stallings V. Consensus report onnutrition for pediatric patients with cystic fibrosis. J PediatrGastroenterol Nutr 2002;35:246–59.

14 Stallings VA, Stark LJ, Robinson KA, et al. Feranchak AP,Quinton H. Evidence-based practice recommendations fornutrition-related management of children and adults withcystic fibrosis and pancreatic insufficiency: results of asystematic review. J Am Diet Assoc 2008;108:832–9.

15 Benson HR. An introduction to benchmarking in healthcare.Radiology Management 1994;16:35–9.

16 Huber TP, Godfrey MM, Nelson EC, et al. Mohr JJ,Campbell C, Batalden PB. Microsystems in health care: Part8. Developing people and improving work life: what front-linestaff told us. Jt Comm J Qual Saf. 2003;29:512–22.

17 Britton LJ, Thrasher S, Gutierrez H. Creating a culture ofimprovement: experience of a pediatric cystic fibrosis center.J Nurs Care Qual 2008;23:115–20; quiz 21-–22.

18 Ernst MM, Wooldridge JL, Conway E, et al. Using qualityimprovement science to implement a multidisciplinarybehavioral intervention targeting pediatric inpatient airwayclearance. J Pediatr Psychol 2009;1:14–24.

19 Kraynack NC, McBride JT. Improving care at cystic fibrosiscenters through quality improvement. Semin Respir Crit CareMed 2009;30:547–58.

20 McPhail GL, Weiland J, Acton JD, et al. Improvingevidence-based care in cystic fibrosis through qualityimprovement. Arch Pediatr Adolesc Med 2010;164:957–60.

21 Leonard A, Davis E, Rosenstein BJ, et al. Description of astandardized nutrition classification plan and its relation tonutritional outcomes in children with cystic fibrosis. J PediatrPsychol 2009;35:116–23.

22 Stern M, Wiedemann B, Wenzlaff P. From registry to qualitymanagement: the German Cystic Fibrosis Quality Assessmentproject 1995 2006. Eur Respir J 2008;31:29–35.

23 Stern M, Niemann N, Wiedemann B, et al. Wenzlaff P.Benchmarking improves quality in cystic fibrosis care: a pilotproject involving 12 centres. Int J Qual Health Care 2011;23:349–56.

24 Stern M. The use of a cystic fibrosis patient registry to assessoutcomes and improve cystic fibrosis care in Germany. CurrOpin Pulm Med 2011;17:473–7.

25 Wiedemann B, Steinkamp G, Sens B, et al. Stern M. TheGerman cystic fibrosis quality assurance project: clinicalfeatures in children and adults. Eur Respir J 2001;17:1187–94.

Supplement





projectFoundation's clinical practice benchmarking Key findings of the US Cystic Fibrosis

Marshall and Michael S SchechterMichael P Boyle, Kathryn A Sabadosa, Hebe B Quinton, Bruce C

doi: 10.1136/bmjqs-2013-0023692014 23: i15-i22 BMJ Qual Saf

http://qualitysafety.bmj.com/content/23/Suppl_1/i15Updated information and services can be found at:

These include:

MaterialSupplementary

2369.DC1.htmlhttp://qualitysafety.bmj.com/content/suppl/2014/03/07/bmjqs-2013-00Supplementary material can be found at:

References #BIBLhttp://qualitysafety.bmj.com/content/23/Suppl_1/i15

This article cites 23 articles, 5 of which you can access for free at:

serviceEmail alerting

box at the top right corner of the online article. Receive free email alerts when new articles cite this article. Sign up in the

Notes

http://group.bmj.com/group/rights-licensing/permissionsTo request permissions go to:

http://journals.bmj.com/cgi/reprintformTo order reprints go to:

http://group.bmj.com/subscribe/To subscribe to BMJ go to:


http://qualitysafety.bmj.com/content/23/Suppl_1/i15

http://qualitysafety.bmj.com/content/suppl/2014/03/07/bmjqs-2013-002369.DC1.html

http://qualitysafety.bmj.com/content/suppl/2014/03/07/bmjqs-2013-002369.DC1.html

http://qualitysafety.bmj.com/content/23/Suppl_1/i15#BIBL

http://group.bmj.com/group/rights-licensing/permissions

http://journals.bmj.com/cgi/reprintform

http://group.bmj.com/subscribe/



downloaded from on october ... · pdf filefrom 2006 to 2007, the paediatric benchmarking team...

Documents