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A national dissemination of an evidence-based self-management program: a process evaluation study

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A national dissemination of an evidence-based self-management program: a process evaluation study
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  A national dissemination of an evidence-based self-managementprogram: a process evaluation study Kate R. Lsrc a, *, Margo-Lea Hurwicz b,1 , David Sobel c,2 , Mary Hobbs c , Philip L. Ritter a a  Department of Medicine, Immunology and Rheumatology, Stanford University School of Medicine, Stanford Patient Education Research Center,1000 Welch Road, Suite 204, Palo Alto, CA 94304, USA b  Department of Anthropology and Gerontology Program, University of Missouri-St. Louis,8001 Natural Bridge Road, St. Louis, MO 63121-4499, USA c  Regional Health Education, Kaiser Permanente Northern California, 1950 Franklin Street, 13th Floor, Oakland, CA 94612, USA Received 6 March 2004; received in revised form 16 September 2004; accepted 7 October 2004 Abstract Whileevidenceexistsregardingtheeffectivenessofmanyhealtheducationinterventions,fewoftheseevidence-basedprogramshavebeensystematically orwidely disseminated.This paper reportson the dissemination ofone such intervention, the 6-week peer-led ChronicDiseaseSelf-Management Program, throughout a large health-care system, Kaiser Permanente. We describe the dissemination process and, usingqualitative analysis of interviews and surveys, discuss the factors that aided and hindered this process and make recommendations for similardissemination projects. Six years after the beginning of the dissemination process, the program is integrated in most of the Kaiser Permanenteregions and is being offered to several thousand people a year. # 2004 Elsevier Ireland Ltd. All rights reserved. Keywords:  Self-management; Translation; Chronic disease; Dissemination 1. Introduction  I knew what I needed to do but I didn’t do it   . . .  until I took this class and realized that I had to do it. Now I’m doingmuch better.  (A class participant)In recent years, self-management forchronicdiseases hasbeen integrated into many comprehensive disease manage-ment programs [1]. Because patients with chronic diseasemake continuous self-management decisions, it is believedthat informed patients improve their decisions by collabor-ating with their health-care providers. In turn, improveddecision-making results in enhanced health-care outcomesand possibly reductions in health-care costs. This belief isborne out in documents such as the 2010 Health CareObjectivesfortheNation,whichincludesgoalsofincreasingthe numberofpatients receivingself-managementeducation[2]. In 2001 Medicare began to reimburse approved self-management programs for people with diabetes.While there is widespread belief in the importance of self-management programs for people with chronic condi-tions, these programs will only fulfill their potential whenprograms that have been shown to be efficacious can besuccessfully replicated, disseminated, and implemented.Many programs have demonstrated their potential effec-tiveness in improving health status and/or reducing health-care utilization. Very little is known, however, about thefactors that both help and hinder dissemination of theseprograms in ‘‘real-world’’settings. This paper will discuss aqualitativestudy of dissemination within a large, nationwidehealth-caresystemoftheChronicDiseaseSelf-ManagementProgram (CDSMP), also known as ‘‘Healthier Living:Managing Ongoing Health Conditions’’.Kaiser Permanente is an integrated health-care systemthat serves over 8 million members invarious regions across www.elsevier.com/locate/pateducouPatient Education and Counseling 59 (2005) 69–79* Corresponding author. Tel.: +1 650 723 7935; fax: +1 650 725 9422. E-mail addresses:  lsrc@stanford.edu (K.R. Lsrc),hurwicz@umsl.edu (M.-L. Hurwicz), david.sobel@kp.org (D. Sobel),philr@stanford.edu (P.L. Ritter). 1 Tel.: +1 314 516 6025; fax: +1 314 516 7235. 2 Tel.: +1 510 987 3579.0738-3991/$ – see front matter # 2004 Elsevier Ireland Ltd. All rights reserved.doi:10.1016/j.pec.2004.10.002  the United States. At initiation of this study, there were 12regions in the system, ranging in size from tens of thousandsof members to several million members. During the courseofthe study,Kaiser Permanente affiliated with Group HealthCooperativeof Puget Sound, which was included as a regionfor the purposes of this project. 2. Background People above the age of 60 have on average 2.2 chronicconditions, and many younger people also have co-morbidconditions [3]. Disease-specific patient education may notbe the most efficient or effective means of meeting thegrowingproblemsassociatedwith chronicdiseaseingeneraland specifically co-morbidity. In an attempt to moreeffectively support these patients, the CDSMP wasdeveloped at Stanford University in the mid-1990s andevaluated in a 6-month randomized trial for over 1000participants [4]. The CDSMP is a six-session (2.5 h weekly)community-based intervention built on self-efficacy theoryand taught by a pair of trained peer leaders with one or morechronic conditions. A common set of core issues and copingskills that applied across chronic illnesses were identified.These are reflected in the course content, which includesgoal setting, feedback, problem-solving, exercise, nutrition,medication use, coping with anger, fear, frustration anddepression, management of pain, fatigue, and shortness of breath, and improving communications with friends, familyand health-care professionals [5].In the original trial, treatment participants whencompared to randomized controls improved their healthbehaviors, health status, and self-efficacy and had 0.8 of aday less hospitalization in 6 months (all  P < 0.05). Many of these outcomes persisted for up to 2 years as demonstratedby asubsequent longitudinal trial [6].Based on these results,a decision was made to disseminate this interventionthroughout Kaiser Permanente. As part of the dissemination,two studies were conducted. The first was an outcome studyto demonstrate the effectiveness of the CDSMP whendisseminated. This 1-year longitudinal study involving 700people demonstrated improvements in health behaviors,health status, self-efficacy, and health-care utilizationsimilar to the original randomized trial [7]. The secondstudy, discussed here, was a process evaluation thatexamined those factors that helped and hindered the nationaldissemination and implementation of the program in a large-scale, ‘‘real-world’’ health-care setting. 2.1. The dissemination process The project was funded by the Garfield Foundation,which was established to evaluate innovations within KaiserPermanente.Inearly1997,theprojectdirector(D.S.)invitedthe Regional Directors of Health Education in each of the 12Kaiser Permanente regions to participate in the study. Allregions but one indicated an interest. The one negativeresponse came from a region that was about to ceaseoperations. A second region decided to delay the start of theprogram.Theremaining10regionswereinvitedtosendstaff to one of four separate 4-day trainings at which participantsbecame ‘‘master trainers’’ who were prepared to train groupleaders as well as to teach and administer the CDSMP.Training functions comprised a major focus of thedissemination. The peer leaders attend a 3.5-day training inwhich they learn to teach in pairs following a detailed leadermanual. Modeling is a key component of the course, andduring the training the trainers conduct the entire workshopexactly as the leaders will in turn be expected to teach. Onthe last day, the leader trainees teach a section of the courseand receive feedback. Each trainee role-plays the ‘‘goal-setting’’ and ‘‘giving feedback’’ techniques that are the mostdifficult skills required of the leaders. The peer leaders aretrained locally by a pair of master trainers who were trainedat the initiation of this project at four master trainingsessions in various parts of the country. In 4.5-day sessions,these trainees were prepared as peer leaders themselves aswell as learning how to train leaders using a detailed mastertrainer manual. Those master training attendees received anadditional 4 h of training on coordinating the program andmanaging the peer leaders to prepare them to serve as localcoordinators. Each newly trained master trainer wasexpected to teach a CDSM workshop prior to conductinga peer leader training. Later in the project master trainerswere trained at sessions that were being held at Stanford forother organizations, or they apprenticed by co-teaching withan experienced master trainer. In the larger regions, peerleader meetings were held periodically where somerefresher role-plays were conducted, a response to feedback from the leaders for periodic refreshers especially on goal-setting.Training programs were held during the summer and fallof 1997, and at least one person was trained from each of theparticipating 10 regions. Participants were to return to theirregions, organize and teach one or more CDSMP programsand then begin training peer leaders. Following the srcinalfour master trainings, one region made an administrativedecision not to offer the program due to budgetary concernsand one region attempted to offer the program but was notable to recruit participants. Shortly thereafter, the latterregion ceased operation as a part of Kaiser Permanente. In1998 Group Health Cooperative of Puget Sound affiliatedwith Kaiser Permanente and joined the study (see Fig. 1 forchronology).In early 1997, a half-time national program coordinator(M.H.) was in place and by late 1997 the eight participatingregions were beginning to offer CDSMP to patients. Inaddition, most regions had appointed regional CDSMPcoordinators. All of the coordinators participated in an e-mail list and were invited to join monthly conference calls inwhich the investigators also participated. During these calls,the coordinators shared their successes and frustrations and K.R. Lsrc et al./Patient Education and Counseling 59 (2005) 69–79 70  often asked for help with specific program-related problems.The most popular recurrent topic was recruitment of participants. These calls continued for the full 3 years of the dissemination project.Although the Garfield Foundation funded a 3-year studyand supported the initial master trainings, the grant did notfund actual implementation of the program. The fundingcovered the researchers, national program coordinator, andcosts of national trainings, excluding trainee time and travelexpenses. All other dissemination expenses including staff,materials, and recruitment costs were funded from theregional or individual site budgets. This model more closelysimulatesreal-worldimplementationandongoingoperations. 2.2. Process evaluation study design background  There is an extensive literature on the dissemination of innovation and organizational change. McLeroy et al.provide a broad review of factors related to programdissemination in their article ‘‘An Ecological Perspective onHealth Promotion Programs’’ [8]. Rogers has provided aclassic description of the process of dissemination of innovation [9]. There is very little literature, however, on thedissemination of programs in large health-care organiza-tions. More recently, Glasgow et al. have presented the RE-AIM model for evaluating the implementation of healtheducation programs [10]. The RE-AIM model provides acontext for our study. 3. Methods 3.1. Study participants Data are from 291 telephone interviews (conducted intwo exploratory rounds), and 225 final round questionnairesadministered to regional health education directors (whodirect all health education activities in a region), regionalcoordinators (who coordinate all CDSMP activities in aregion), site coordinators (who coordinate CDSMP in agroup of hospitals and clinics in the three largest regions),master trainers (who train CDSMP peer leaders), and peer K.R. Lsrc et al./Patient Education and Counseling 59 (2005) 69–79  71Fig. 1. Dissemination process.  leaders (who actually teach the program). Many of theparticipantsfitintotwoormoreofthesecategoriesandinthefinal round were asked to answer the questionnaire befittingtheir ‘‘highest level’’ category. Not all levels of potentialparticipants existed in all regions, and some potentialparticipants had moved on to new positions by the time of the final round. 3.2. Ethics committee approval Human Subjects Committee Approval was initiallygranted and annually renewed by the Stanford UniversityAdministrativePanel forHuman Subjects and by the HumanSubjects Committee in each of the regions of KaiserPermanente in which this project was disseminated. 3.3. Criteria The investigators established criteria a priori as thestandard by which to judge the relative success of thedissemination at the end of the 3-year study. These criteriawere based on the RE-AIM (  R each,  E  fficacy,  A doption,  I  mplementation,  M  aintenance) Model suggested by Glas-gow and was modified based on the results of exploratoryrounds 1 and 2 [10].For this study, the RE-AIM  R each criteria included thenumberofregionsparticipatinginthereachandthenumberof participants in each region. The specific  R each criteria were:(1)CDSMPofferedonanongoingbasis,(2)coursesofferedinseveral sites within a region, and (3) ability to recruitparticipants. The  E  fficacy criterion was: (4) data demonstrat-ing CDSMP effectiveness as measured by improved healthstatus and reduced health-care utilization. The  A doptioncriterion was that (5)a region initiallyadopted and attemptedto implement the program. There were several  I  mplementa-tion criteria: (6) ongoing training of master trainers resultinginanadequatenumberofmastertrainers,(7)ongoingtrainingof peer leaders resulting in an adequate number of peerleaders, (8) sufficient referrals from physicians and otherhealth-care professionals, and (9) low drop out rate. Finallytherewerethree  M  aintenancecriteria:(10)integrationintothecontinuum of care, (11) adequate ongoing staffing andfunding, and (12) ongoing workshops scheduled.The selection of success criteria was validated by theregional directors, regional coordinators, and site coordi-nators who rated all these criteria as important or veryimportant 5.1–6.8 on a 1–7 scale. 3.4. Data collection3.4.1. Exploratory rounds 1 and 2 In year 1, the round 1 interviews were conducted bytelephone, using an open-ended format. The questionsexplored what the participants thought were the strengthsand weaknesses of the CDSMP program/dissemination intheir region, as well as recommendations for change.Interviewers wrote down the answers, staying as close toverbatim responses as possible, and then entered them intoMS Word files.In year 2, the results of the round 1 interviews were usedto construct round 2 interview questions that were moretargeted but still open-ended, and were also entered into MSWord files. The results of the round 2 interviews wereanalyzed using classical content analysis procedures[11,12]. Materials were reviewed several times by one of the investigators and a graduate student, and recurringthemes were identified. Categories to be coded (variables)were developed for each level of participant (regionaldirectors, regional coordinators, site coordinator, mastertrainers, and peer leaders). The interviews were coded bynoting the presence or absence of each category, and aperson-by-variable matrix was created to permit statisticalanalysisofthedata.Atthispoint,decisionsweremadeaboutlumping and/or splitting categories. Data were entered intoMS Access files and tabulated by level and region. 3.4.2. Development of final written survey A written survey that consisted mostly of closed-endedquestions for each level of personnel was constructed for usein the final survey. The content came from the round 1 and 2interviewsaswellassuggestionsfromtheinvestigators.Threedifferent questionnaires were developed: one for regionaldirectors (10 pages), one for regional and facility sitecoordinators (15pages),andoneforcourseleaders (7pages).The final survey questions were designed to address eachof the success criteria as well as the major ‘‘helps andhindrances’’ themes for dissemination that emerged from theround 1 and 2 data analyses. These were presented usingLikert-like scales. Finally therewere areas of interest that theinvestigators felt had not been explored adequately inprevious questionnaires. These were included in the finalsurvey as open-ended questions. The resulting paper-and-pencilinstrumentsweremailedtotheparticipantsattheendof year 3.The responses to the surveys are used to illustrate andcomplementthefindingsoftheresearchersastheywitnessedsuccess and failure in the implementation process at thedifferent regions. 3.5. Data analysis The responses to the closed-ended questions from thefinal survey were entered directly into computer files forstatistical analysis. The open-ended questions were codedusing classical content analysis procedures (see above) andthen transferred to computer files. The nature of the datacollected did not lend itself well to traditional statisticalanalyses because of varying response rates, low numbers oreven lack of individuals in some categories of respondents,and differential response by regions. Despite that limitation,where possible we compared the mean responses by thedifferent regions, as well as overall. For some questions, K.R. Lsrc et al./Patient Education and Counseling 59 (2005) 69–79 72  regional means were obtained by grouping regionaldirectors, regional coordinators, and site coordinators. Ingeneral,thedataareusedinadescriptivemannertoillustraterather than test findings. 4. Results Theresultspresentedbelowarebasedondatacollectedinthe final survey and the discussion section is supplementedby the experience of the research team, findings from theinitial telephone interviews, review of the monthly inter-regional conference calls, and individual contacts betweenthe researchers and the site staff.At the beginning of the study in 1997 Kaiser Permanentehad the potential of 12 participating regions. At the end of thestudyperiodinDecember2001,fouroftheseregionshadceased operations as part of Kaiser Permanente. In 1998,Group Health Cooperative of Puget Sound became affiliatedwith Kaiser Permanente and for the purpose of this studywill be counted as a separate ‘‘region’’. Thus, the resultsdiscussed here report on nine regions (see Fig. 1). Five of these regions met most or all of the success criteria. Theprogramwasnotbeinggiveninthreeregions,andoneregioncontinuestogivecoursesbutdidnotmeethalformoreofthesuccess criteria at the end of the study period.A list of potential respondents to the final survey wascreatedby Kaiser Permanente personnel, and were invited tocomplete the survey. The overall response rate for the finalsurvey was 69%. However, three categories had a responserate of 79%: the regional directors, the master trainers, andthe peer leaders. At the middle levels, the response rate waslower: only 39% of the regional coordinators and 43% of thesite coordinators responded. In part, this was due to staff turnover during the study, or staff leaving their positions inregions where the program was no longer being offered orwhere the region had ceased operations. 4.1. Aids and barriers to dissemination In 1998, approximately 750 patients participated in theprogram nationwide during the quantitative study. In 2002,approximately 2500 people participated.The following is a discussion of the factors that hinderedor helped successful dissemination as defined in the successcriteria enumerated above. For discussion purposes, theseaids and barriers are broken down into three main categories(1) attributes of the CDSMP, (2) administrative factors, and(3) organizational factors. 4.1.1. Attributes of the program My biggest surprise is becoming aware of the fact that individuals learn from one another in a non-threateningenvironment.  (Site Coordinator)The regional health education directors, the regionalCDSMP coordinators, and the site CDSMP coordinatorsfrom individual health facilities such as hospitals and/orclinics all indicated that the data showing programeffectiveness (impact on health status and health-careutilization) was important to its successful dissemination(mean 5.8–6.5 on a scale of 1–7 with 7 being veryimportant). It should be noted that at the time of initialdissemination, the results from the srcinal randomizedtrial were unpublished. Later the published data were usedto help support implementation. Most regional directors,regional coordinators, and site coordinators also found thecontent of the course to be important for the successfulimplementation (means 5–7 out of 7). Staff who workedwith the program showed a true enthusiasm based on theirobservations of improvements in the participants. Sixregions listed the design of the program as being helpfulfor its implementation (means 5–6.5 out of 7). One regionthat did not continue offering the program rated theprogram design as a hindrance to implementation (mean2). Most of the regions found the length of the CDSMP (6weeks) as well as the length of the individual sessions (2–2.5 h) to be acceptable, although two regions, onesuccessful and one not successful, found both the lengthof the course and the length of the sessions to be ahindrance to implementation. While most respondersfound that the length of the individual sessions wasappropriate there was more divergent opinion about howthe number of sessions affected successful disseminationwith wide-ranging responses from 1 (great hindrance) to 7(great help). For the most part, those regions that were notsuccessful in implementing the program found the programlength to be a hindrance. 4.1.2. Administrative factors4.1.2.1. Participant recruitment. I believe direct communications with patients, rather thanall channeled through the physician and health care team,will be a large part of the future.  (Leader)  I don’t have the time or luxury to partner with thecommunity.  (Regional Director)  Not being linked to a specific condition made the programdifficult to market to providers.  (Regional Coordinator)Several factors pertaining to the administration of theCDSMP affected the dissemination process. Peer leaders,site coordinators, regional coordinators, and regionaldirectors identified that participant recruitment was by farthe largest barrier to successful implementation. Most earlyrecruitment efforts were aimed at getting physicians to referand approaching patients through the use of flyers, publicservice announcements, and the use of a program-specificvideo in clinic waiting rooms. Because CDSMP is a peer-led K.R. Lsrc et al./Patient Education and Counseling 59 (2005) 69–79  73
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