Adherence and Self-management in Pediatric Populations PDF
Preview Adherence and Self-management in Pediatric Populations
ADHERENCE AND SELF- MANAGEMENT IN PEDIATRIC POPULATIONS Editedby A C. M VANI ODI CincinnatiChildren’sHospitalMedicalCenterand UniversityofCincinnatiCollegeofMedicine Cincinnati,OH,UnitedStates K A. D IMBERLY RISCOLL CollegeofPublicHealthandHealthProfessions UniversityofFlorida,Gainesville,FL,UnitedStates AcademicPressisanimprintofElsevier 125LondonWall,LondonEC2Y5AS,UnitedKingdom 525BStreet,Suite1650,SanDiego,CA92101,UnitedStates 50HampshireStreet,5thFloor,Cambridge,MA02139,UnitedStates TheBoulevard,LangfordLane,Kidlington,OxfordOX51GB,UnitedKingdom Copyright©2020ElsevierInc.Allrightsreserved. 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LibraryofCongressCataloging-in-PublicationData AcatalogrecordforthisbookisavailablefromtheLibraryofCongress BritishLibraryCataloguing-in-PublicationData AcataloguerecordforthisbookisavailablefromtheBritishLibrary ISBN:978-0-12-816000-8 ForinformationonallAcademicPresspublicationsvisitourwebsiteat https://www.elsevier.com/books-and-journals Publisher:AndreGerhardWolff AcquisitionEditor:NikkiLevy EditorialProjectManager:BarbaraMakinster ProductionProjectManager:PunithavathyGovindaradjane CoverDesigner:MatthewLimbert TypesetbyTNQTechnologies Contributors OlufunkeAfolabi-Brown UniversityofPennsylvania,Philadelphia,PA,United States SandraAmaral Children’sHospitalofPhiladelphia,Philadelphia,PA,United States GregoryBartos CenterforDermatologyResearch,DepartmentofDermatology, WakeForestSchoolofMedicine,Winston-Salem,NC,UnitedStates ColleenF.BechtelDriscoll LoyolaUniversityChicago,Chicago,IL,United States ErinG.Clifton DepartmentofPsychiatry,MichiganMedicine,AnnArbor,MI, UnitedStates AbigailCline CenterforDermatologyResearch,DepartmentofDermatology, WakeForestSchoolofMedicine,Winston-Salem,NC,UnitedStates SalomeNicoleCockern WayneStateUniversity,DepartmentofPediatrics, Detroit,MI,UnitedStates MelissaK.Cousino DepartmentofPediatrics,UniversityofMichiganMedical School,UniversityofMichiganTransplantCenter,C.S.MottChildren’s Hospital,MichiganMedicine,AnnArbor,MI,UnitedStates LoriE.Crosby DivisionofBehavioralMedicineandClinicalPsychology, CincinnatiChildren’sHospitalMedicalCenter; DepartmentofPediatrics, UniversityofCincinnatiCollegeofMedicine,Cincinnati,OH,UnitedStates KeDing DepartmentofClinicalandHealthPsychology,UniversityofFlorida, Gainesville,FL,UnitedStates KimberlyA.Driscoll DepartmentofClinical&HealthPsychology,Collegeof PublicHealthandHealthProfessions,UniversityofFlorida,Gainesville,FL, UnitedStates DimaEzmigna PediatricPulmonaryDivision,DepartmentofPediatricsinthe CollegeofMedicine,UniversityofFlorida,Gainesville,FL,UnitedStates LeslieA.Favier DepartmentofPediatricRheumatology,Children’sMercy Hospital,KansasCity,MO,UnitedStates DavidA.Fedele DepartmentofClinical&HealthPsychology,CollegeofPublic HealthandHealthProfessions,UniversityofFlorida,Gainesville,FL,United States StevenR.Feldman CenterforDermatologyResearch,Departmentof Dermatology; DepartmentofPathology; DepartmentofSocialSciences& HealthPolicy,WakeForestSchoolofMedicine,Winston-Salem,NC,United States xi xii Contributors KaylaH.Felix CenterforDermatologyResearch,DepartmentofDermatology, WakeForestSchoolofMedicine,Winston-Salem,NC,UnitedStates EmilyM.Fredericks DepartmentofPediatrics,UniversityofMichiganMedical School,UniversityofMichiganTransplantCenter,C.S.MottChildren’s Hospital,MichiganMedicine,AnnArbor,MI,UnitedStates RachelN.Greenley DepartmentofPsychology,CollegeofHealthProfessions, RosalindFranklinUniversityofMedicineandScience,NorthChicago,IL, UnitedStates ShannaM.Guilfoyle DivisionofBehavioralMedicineandClinicalPsychology, CincinnatiChildren’sHospitalMedicalCenter; DepartmentofPediatrics, UniversityofCincinnatiCollegeofMedicine,Cincinnati,OH,UnitedStates AnaM.Gutierrez-Colina DivisionofBehavioralMedicineandClinical Psychology,CenterforAdherenceandSelf-Management,CincinnatiChildren’s HospitalMedicalCenter,Cincinnati,OH,UnitedStates LaurenE.Harrison DepartmentofAnesthesiology,PerioperativeandPain Medicine,StanfordUniversitySchoolofMedicine,PaloAlto,CA,UnitedStates OnengiyaHarry DepartmentofPediatrics,SectionofRheumatology,Brenner Children’sHospitalWakeForestBaptistHealth,Winston-Salem,NC,United States GraysonN.Holmbeck LoyolaUniversityChicago,Chicago,IL,UnitedStates DavidM.Janicke DepartmentofClinicalandHealthPsychology,Universityof Florida,Gainesville,FL,UnitedStates KatherineM.Kidwell DivisionofBehavioralMedicineandClinical Psychology,CincinnatiChildren’sHospitalMedicalCenter,Cincinnati,OH, UnitedStates CaseyLawless PulmonaryMedicineDivision,Children’sNationalHealth System,Washington,DC,UnitedStates AnaMariaLi-Rosi NicklausChildren’sResearchInstitute,NicklausChildren’s Hospital,Miami,FL,UnitedStates KarenMacDonell WayneStateUniversity,DepartmentofFamilyMedicineand PublicHealthSciences,Detroit,MI,UnitedStates MeghanE.McGrady PatientandFamilyWellnessCenter,CancerandBlood DiseasesInstitute,CincinnatiChildren’sHospitalMedicalCenter; Department ofPediatrics,UniversityofCincinnatiCollegeofMedicine,Cincinnati,OH, UnitedStates AvaniC.Modi DivisionofBehavioralMedicineandClinicalPsychology,Center forAdherenceandSelf-Management,CincinnatiChildren’sHospitalMedical Center;DepartmentofPediatrics,UniversityofCincinnatiCollegeofMedicine, Cincinnati,OH,UnitedStates SylvieNaar FloridaStateUniversity,CenterforTranslationalBehavioral Science,Tallahassee,FL,UnitedStates HollyK.O’Donnell DepartmentofClinicalHealthPsychology,Universityof FloridaDiabetesInstitute,UniversityofColoradoDenver,Denver,CO,United States xiii Contributors AhnaL.H.Pai PatientandFamilyWellnessCenter,CancerandBloodDiseases Institute,CincinnatiChildren’sHospitalMedicalCenter; CenterforAdherence andSelf-Management,BehavioralMedicineandClinicalPsychology, CincinnatiChildren’sHospitalMedicalCenter; DepartmentofPediatrics, UniversityofCincinnatiCollegeofMedicine,Cincinnati,OH,UnitedStates DelanaM.Parker DepartmentofAnesthesiology,PerioperativeandPain Medicine,StanfordUniversitySchoolofMedicine,PaloAlto,CA,UnitedStates StefaniaPinto DepartmentofClinicalandHealthPsychology,Universityof Florida,Gainesville,FL,UnitedStates JillM.Plevinsky CenterforTreatmentAdherenceandSelf-Management, DivisionofBehavioralMedicineandClinicalPsychology,CincinnatiChildren’s HospitalMedicalCenter,Cincinnati,OH,UnitedStates AlexandraM.Psihogios Children’sHospitalofPhiladelphia,Philadelphia,PA, UnitedStates AlexandraL.Quittner NicklausChildren’sResearchInstitute,Nicklaus Children’sHospital,Miami,FL,UnitedStates KristinLoiselleRich DepartmentofBehavioralMedicineandClinical Psychology,CincinnatiChildren’sHospitalMedicalCenter,Cincinnati,OH, UnitedStates BrunoSaconi UniversityofPennsylvania,Philadelphia,PA,UnitedStates AmyM.Sawyer UniversityofPennsylvania,Philadelphia,PA,UnitedStates LauraE.Simons DepartmentofAnesthesiology,PerioperativeandPain Medicine,StanfordUniversitySchoolofMedicine,PaloAlto,CA,UnitedStates AimeeW.Smith DepartmentofPsychology,EastCarolinaUniversity, Greenville,NC,UnitedStates AlexaStern LoyolaUniversityChicago,Chicago,IL,UnitedStates ColleenStiles-Shields LoyolaUniversityChicago; RushUniversityMedical Center,Chicago,IL,UnitedStates LaurenSzulczewski PatientandFamilyWellnessCenter,CancerandBlood DiseasesInstitute,CincinnatiChildren’sHospitalMedicalCenter; Department ofPediatrics,UniversityofCincinnatiCollegeofMedicine,Cincinnati,OH, UnitedStates MarshaJ.Treadwell DepartmentofHematology/Oncology,Universityof California,SanFrancisco,BenioffChildren’sHospitalOakland,Oakland,CA, UnitedStates SaraE.Voorhees DepartmentofClinical&HealthPsychology,CollegeofPublic HealthandHealthProfessions,UniversityofFlorida,Gainesville,FL,United States JenniferL.Warnick DepartmentofClinicalandHealthPsychology,University ofFlorida,Gainesville,FL,UnitedStates AlexaJ.Watach UniversityofPennsylvania,Philadelphia,PA,UnitedStates xiv Contributors MelissaS.Xanthopoulos UniversityofPennsylvania,Philadelphia,PA,United States KathyZebracki ShrinersHospitalsforChildreneChicago; Northwestern UniversityFeinbergSchoolofMedicine,Chicago,IL,UnitedStates Preface PubMedindexesmorethan40,000articlesonadherence.Severaltexts arealsodedicatedtopediatricadherenceincludingAdherencetoPediatric Medical Regimens (Rapoff,1999, 2009) and Promoting Adherence to Medical Treatment in Chronic Childhood Illness: Concepts, Methods, and Interventions (Drotar, 2000). This book, Adherence and Self-Management in Pediatric Populations, is a much needed update on the state of the adherence field with chapters dedicated to specific diseases, many of which have not been written about in other texts (e.g., sleep, obesity, dermatological diseases). The introduction provides a review of adherence and self- managementtheories,measurementapproaches,andinterventionstrate- giesusedacrosspediatricchronicconditions.Thefinalchapterfocuseson emergingareasinthefieldthatprovideguidanceandrecommendations for future directions in this important field. Adherence experts in their respective fields wrotethechaptersincludedin this text. This book is unique because disease-specific chapters include the following: (1) basic background about the diseaseddefinition, etiology, diagnosis, prevalence; (2) guiding adherence theories; (3) evidence- based assessment of adherence; (4) evidence-based interventions and promising interventions to improve adherence; (5) case study; and (6) emerging areas and conclusions. Clinicians, researchers, instructors, and trainees of all levels and from many fields including medicine, psychology,socialwork,andnursingwillfindthistobeabeneficialintro- ductory text summarizing the state of adherence in each disease, which we hope will stimulate highly significant and innovative research and clinical care. Fiftyyearsago,R.BrianHaynesdefinedthetermmedicalcompliance as“theextenttowhichthepatient’sbehavior(intermsoftakingmedica- tions,followingdiets,orexecutingotherlifestylechanges)coincideswith medical or health advice.” Since that time, much debate has taken place about the appropriate term that should accompany this definition. Compliance eventually fell out of favor as it implies a “paternalistic attitude toward the patient on the prescriber’s part” (Aronson, 2007). Concordance followed and also fell out of favor as an acceptable term because it is a synonym for compliance (Aronson, 2007). For the past 20 years, the term adherence has dominated the extant literature, but the debate about its appropriateness has recently surfaced with arguments that it also focuses too muchdlike the other termsdon what someone xv xvi Preface elsewantsandwhatanindividualisdoingwrong(Dickinsonetal.,2017). Thus, Dickinson and colleagues suggest replacement language such as engagement, participation, involvement, and medication taking. We do not intend to engage in a debate about the accuracy or acceptability of the “most appropriate term” but rather acknowledge that this debate willlikelycontinuefordecadestocome.Withthisinmind,wehaveelec- ted to continue to use adherence and self-management given they are accepted terms inthe field of pediatric psychology. References Aronson, J. K. (2007). Compliance, concordance, adherence. British Journal of Clinical Pharmacology,2007,383e384. Dickinson, J. K., Guzman, S. J., Maryniuk, M. D., O’Brian, C. A., Kadohiro, J. K., Jackson, R. A., … Funnell, M. M. (2017). The use of language in diabetes care and education.DiabetesCare,40,1790e1799. Drotar,D.(2000).Promotingadherencetomedicaltreatmentinchronicchildhoodillness:Concepts, methods,andinterventions.Mahwah,NJ:LawrenceErlbaumAssociates,Inc. Rapoff,M.A.(1999).Adherencetopediatricmedicalregimens.NewYork,NY:Springer. Rapoff,M.A.(2009).Adherencetopediatricmedicalregimens(2nded.).NewYork,NY:Springer. Acknowledgments We would like to acknowledge two very important women who mentored us, both of whom are clinical psychologists, but who are now our colleagues and friendsdDr. Alexandra Quittner and Dr. Suzanne Bennett Johnson. Drs. Quittner and Johnson were adherence pioneers, both clinically and in research, in the areas of cystic fibrosis and type 1 diabetes,respectively.Theirinvaluablementorshipandhighexpectations for excellence throughout the various stages of our careers, without a doubt,havecontributedtoourindividualsuccesses,andweareproudto carry on their legacies. In addition, Dr. Dennis Drotar, a pioneer in the field of pediatric adherence, played a pivotal role in the career develop- ment of several of the authors who contributed chapters to this book, including Dr.Modi. Other significant mentors include Dr. Tracy Glauser, Dr. Lori Stark, Dr.JanetKistner,andDr.ScottPowers.Wearealsoextremelygratefulto the agencies that have funded our work in adherence including the National Institutes of Health, Cincinnati Children’s Hospital Medical Center (Dr. Modi: Endowed Scholars, Schmidlapp Women’s Scholar Award, and Research Innovation Pilot Funding grant), Florida State University (Dr. Driscoll), the American Diabetes Association, and the Juvenile Diabetes Research Foundation. On behalf of all of the authors of the chapters in this book, we are indebtedtothegenerosityoftheindividualsandtheirfamilieswhohave participatednotonlyinourstudiesbutalsointhenumerousstudiescited in each chapter. Without them, this book would notbe possible. Finally, special thanks to our families, friends, and four-legged companions who have supported us as we climb the academic ladder of success. In particular, Dr. Modi would like to thank her husband, Nilesh Patel, her three children (Leena, Arishta, and Elias), and Biscuit (her bernedoodle) for bearing her late nights and weekends while she wroteandeditedthisbook.Shewouldalsoliketothankherparents,who have supported and encouraged her tremendously. Dr. Driscoll would like to thank her parents and her brother for their loving support throughout her career. Finally, Dr. Driscoll would like to thank Safari (herhound)forsupportingherthroughmultiplemoves,beingalazy,but stableandtreat-lovingcompanion,andforherallheranticsthatmakelife a bit morefun. xvii
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