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Beneath the surface: discovering the unvoiced concerns of older adults with Type 2 diabetes mellitus

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Beneath the surface: discovering the unvoiced concerns of older adults with Type 2 diabetes mellitus
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  Beneath the surface: discovering the unvoiced concernsof older adults with Type 2 diabetes mellitus Jennifer Tjia  1,2 *, J. L. Givens 3 , J. H. Karlawish 4,5,6,7 ,A. Okoli-Umeweni 8 and F. K. Barg 5,9,10 Abstract Emerging clinical guidelines recommendshared decision making to individualize drugregimens for older adults with Type 2 diabetesmellitus. While the current health educationcampaign for diabetes in the United Statesrecommends physician-initiated medication-related discussions about adherence and sideeffects, little emphasis is placed on solicitingpatient concerns. This study’s aim was to ex-plore the concerns of older adults with diabetesabout the complexity of their drug regimens andto determine whether they discussed medication-related concerns with their physician. Twenty-two patients with Type 2 diabetes age 65 yearsandolderwhousedfiveormoremedicationswereselected from an urban academic geriatric medi-cine practice in the United States. In-depth semi-structured interviews were conducted to uncoverparticipants   perceptions of multiple medicationuse and related discussions with providers. Thepredominant theme that emerged was the vari-ability in medication-related topics that patientsperceivedtheycoulddiscusswiththeir physician.While most participants described physician-initiated discussions about adherence and sideeffects, many did not bring up concerns aboutmedication cost or their desire to reduce medica-tionburden.Inordertoencouragegreaterpatientinvolvement in medication decision making fordiabetes treatment, educational messages pro-moting patient–physician dialogue need to takemore account of patient concerns. Introduction A shift toward patient centeredness in chronic dis-ease management has led to an increased focus onshared decision making between patients and physi-cians [1–3]. Improved patient–provider communi-cation and shared decision may lead to greater patient satisfaction, adherence to treatment plansand improved health outcomes [4–10]. Publichealth education programs are focusing on patient– physician communication because medication-related decisions are some of the most commonand important decisions for patients [11]. A grow-ing number of campaigns are trying to promotepatient–physician communication [12, 13]. Maxi-mizing the effectiveness of such public healthefforts depends on understanding patients   medica-tion concerns and the nature of patient–physiciancommunication about medicines. 1 Department of Medicine,  2 Department of Medicine MeyersPrimary Care Institute, University of MassachusettsMedical School, Biotech 4, 377 Plantation Street, Suite 315,Worcester, MA 01605, USA,  3 Division of Geriatric Medicine,Boston Medical Center, Boston, MA 02118, USA, 4 Department of Medicine,  5 Department of MedicineInstitute on Aging,  6 Center for Bioethics,  7 Alzheimer’sDisease Center, University of Pennsylvania, Philadelphia,PA 19104, USA,  8 Department of Geriatric Medicine,University of Medicine and Dentistry of New Jersey,New Brunswick, NJ 08901, USA,  9 Department of Anthropology, School of Arts and Sciences and 10 Department of Family Medicine and Community Health,University of Pennsylvania, Philadelphia,PA 19104, USA*Correspondence to: J. Tjia.E-mail: jennifer.tjia@umassmed.edu  The Author 2007. Published by Oxford University Press. All rights reserved.For permissions, please email: journals.permissions@oxfordjournals.org doi:10.1093/her/cyl161 HEALTH EDUCATION RESEARCH Vol.23 no.1 2008Pages 40–52Advance Access publication 31 January 2007   b  y g u e  s  t   onM a r  c h 1  8  ,2  0 1  6 h  t   t   p :  /   /  h  e r  . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  Patient–physician communication in diabetesmellitus (DM) management is particularly impor-tant to individualize DM management for older adults. This is a recommendation of the AmericanGeriatrics Society [14]. Eliciting preference for these patients is important because active pharma-cologic treatment could cause more harm thanbenefit [14], affect quality of life by increasingmedication burden [15] or requiring needle usefor insulin [16] and impart significant economicburden [17]. Cost-related underuse contributes topoorer outcomes in patients with DM, and poly-pharmacy contributes to poor adherence [15, 18,19]. Optimizing communication and understandingpatient preference is central to achieving indi-vidualized therapy [20].We know from previous research about patient– physician communication and decision making for medications that (i) patients do not reveal aspects of their medication behavior to their physician [21],(ii) there is considerable ambivalence about takingdrugs [22], (iii) physicians mistakenly think theyknow patient preferences regarding prescribing[23], (iv) patients vary in their desire to participatein medication decision making [24] and (v) mis-understandings between patients and physiciansare common and based on inaccurate assumptionsby both parties [23]. Previous studies also show that patients with DM do not discuss cost with their physicians even if prohibitive medication expenseleads to non-adherence [25]. Work specificallyaddressing communication and patient preferencefor DM treatment shows that desire for aggressive-ness of treatment varies among older patients [26]and that physician communication plays an impor-tant role in enhancing DM self-management andoutcomes [27, 28].What is missing is the perspective of older per-sons with DM that specifically focuses on their views toward their medication regimens, the natureof their medication-related discussions with their physicians and ultimately how much patient prefer-ence is taken into account in prescribing. We buildon previous investigations by conducting qualita-tive interviews with older patients with DM to char-acterize medication-related discussions with their prescribing physicians. The specific aims of thispilot study were to (i) describe whether patientsdiscussed medication therapy with their physician,(ii) characterize the issues addressed in medication-related discussions, (iii) describe the patient per-spective regarding complex medication regimensand (iv) identify topics that patients wished to dis-cuss with their physicians that were not usuallyaddressed. In this way, we sought to identify older patients   unvoiced concerns regarding DM therapyinvolving complex medication regimens. Our goalis that this information can educate providers andpatients about relevant but unrecognized concerns. Methods Study design Two members of the research team (A.O.K. andSangeeta Bhojwani) conducted audiotaped inter-viewsfollowinga semi-structuredinterview schema with semi-structured questions. Domains included(i) a self-assessment of comorbidities (  Please de-scribe your medical problems.  ), (ii) communicationwith their physicians about medications (  Do youspeak with your physician about your medications?If so, what specifically do you talk about?  ;   Is thereanythingelseaboutyourmedicationsthatyouwouldlike your physician to discuss during your visits?  )and (iii) medication use (  How many pills do youtakeeveryday?  ,  Howdoyoufeelaboutthenumber of pills you are taking?  ,   Are some of these medica-tions more important to you than others?  ,   Arethere some medications that you want to stoptaking?  ,   In the past 12 months, have you ever haddifficultygettingyourmedicationsforanyreason?  ).Because medication cost and number of medi-cations used are important, modifiable aspects of regimen design that affect adherence [29, 19], wealso included probes to address these issues if not spontaneously discussed:   Do you speak with your physician about the cost of your medications?’ and  Do you speak with your physician about thenumber of pills you take?’ At the end of the inter-view, participants completed measures of generalhealth (  Overall, how would you rate your healthUnvoiced concerns of older adults with Type 2 DM 41   b  y g u e  s  t   onM a r  c h 1  8  ,2  0 1  6 h  t   t   p :  /   /  h  e r  . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  in the past 4 weeks?  ), functional status and socio-demographic characteristics. Participants Participants were drawn from a single outpatient academic geriatric medicine practice and were eli-gible if they were aged 65 years and older, diag-nosed with Type 2 DM, had at least two visits withtheir primary care provider in the previous year,lived in the community and were not residents of assisted living facilities and managed their ownmedications. Inclusion criteria were verified bymedical record review and responsibility for medi-cation management was confirmed by self-report.Investigators chose to interview patients who madetheir own medication decisions because of interest in the point of view of the aging individual rather than of proxy decision makers. Because the focusof the investigation was on the patient’s burden of multiple medication use, including the concern for potential drug interactions and dosing complexities,investigators included people whose record indi-cated the simultaneous use of five or more medica-tions [30] instead of using a criteria based onexcessive prescribing or cumulative medicationuse within a given time period. Recruitment A total of 119 individuals with Type 2 DM wereidentified. Investigators reviewed medical recordsto identify patients who met eligibility criteria andto identify those unable to participate because of cognitive impairment, hearing impairment or other language barriers. Cognitive impairment was de-fined having a Mini-Mental Status Examinationscore of 23 or less documented in the outpatient medical record. A total of 59 individuals were iden-tified as potentially eligible for this study and in-vestigators sent a list of these patients to practicephysicians to obtain permission to contact the pa-tient. Investigators gained physician permissionto contact 50 eligible individuals. From the 50 eligi-ble individuals, individuals were called with thegoalofattainingapurposivesampleofrespondents-representing a mix of men and women, race andhousehold income that was representative of thepractice population. Our target enrollment was 20participants for this pilot study because previousstudies have found thematic saturation with as fewas 12 interviews [31]. In the end, we enrolled 23participants. Of the completed interviews, one inter-view was lost because of faulty audio recording,leaving 22 completed interviews for analysis. Data collection Digitally recorded interviews were conducted be-tween June 2004 and September 2004. Except for one conducted in the clinic at the request of theparticipant, all interviews were conducted in thepatient’s home. A typical interview lasted ; 30 min. Coding and analysis of data The recorded interviews were transcribed in full bya professional transcription service and the accu-racy was checked against the srcinal digital record-ings by a single member of the research team.Investigators analyzed the transcripts in three stagesusing thematic analysis. First, transcripts werebroadly coded separately by two of the investiga-tors (J.T. and J.L.G.) based on the study aims.Inthesecondstageofanalysis,thetranscriptswerereread to explore recurrent emerging themes withinthe broad categories of medication use and commu-nication to develop fine coding themes. Using theconstant comparative method, transcripts were re-read by the same two investigators to recode theinterviews based on these newly identified fine cod-ingthemes [32].In this way,themesunderwentcon-tinuous refinement throughout the analytic process.In the final stage, coding of the transcripts wascompared for differences. When differences wereidentified, the same two investigators met to reviewthe transcripts and reconcile differences in order tovalidate the themes. The frequency of discrepanciesbetween reviewers was approximately <10%. An-alysis of the transcripts was facilitated by the use of the software package QSR N6 (QSR International,Melbourne, Australia).Participants provided written informed consent to participate in this University of Pennsylvania Institutional Review Board-approved protocol.J. Tjia   et al  . 42   b  y g u e  s  t   onM a r  c h 1  8  ,2  0 1  6 h  t   t   p :  /   /  h  e r  . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  Results Characteristics of respondents Among the 22 patients interviewed, 17 werewomen and the average age was 75. Seventeenrespondents were black, three were white and threewere Asian, American Indian or other race. Themajority (>75%) had insurance to cover the cost of their medications. Less than one-quarter (23%)had some high school education or less. Based onindividual’s zip codes and the median householdincome by zip code census data [33], the averagemedian household income was $29 234 (range$15 888–63 750). Seven used five prescribed med-ications a day, 11 used six to 10 medications a dayand four used >10 medications a day. The majorityreported no impairments in their ability to performeither basic or instrumental activities of dailyliving (Table I). The respondents were cared for by eight physicians in the practice and each physi-cian had from one to five patients participatingin this pilot study. The demographics of the prac-tice population from which the study sample wasdrawn are as follows: average age 79; female 72%;African American 54%, white 34%, other race10%, Asian/Pacific Islander 0.6% and AmericanIndian/Alaskan native 0.1%. Our study populationoverrepresented African Americans, was some-what younger in age, but representative in termsof gender. Do patients discuss medication therapywith their physician? The majority (95%) reported they spoke with their physicians about their medications. Only one re-spondent voiced the belief that their physiciandid not have time to discuss medication issueswith them:I don’t talk to my doctor about my medicationsbecause half of the time these doctors today donot have time to sit and talk with you. Not just my doctor, any of them do not have the time. Ithink they are limited to a certain time as to howlong they are supposed to talk to a patient andvisit a patient. And if they go over their time it’slike a crime, so I really do not have the time totalk to him about it. Issues addressed in medication-relateddiscussions with physicians All other respondents said they did speak with their physicians regarding their medications and offered Table I.  Patient characteristics ( n  =  22) Characteristics  n  %Age, mean 6 SD 75 6 7.2Female 16 73RaceWhite 3 14African American 16 73Asian/Pacific Islander/Hawaiian 1 5American Indian/Alaskan Native 1 5Other 1 5Marital statusMarried 9 41Single or divorced 6 27Widowed 6 27No response 1 5EducationSome high school or less 5 23High school graduate or some college 12 54College graduate 1 5Graduate school 4 18Drug insurance sourceState Pharmacy Assistance Program 7 32Employer/retirement 10 46None 5 23Self-reported health statusExcellent 2 9Very good 3 14Good 11 50Fair 6 28Poor 0 0Number of prescribed medications5–10 18 82 > 10 4 18Out-of-pocket expenses for prescriptionmedications (per month)$0 2 9$1–50 7 32$51–100 5 23$101–150 1 5 > $150 5 23No response 2 9 Unvoiced concerns of older adults with Type 2 DM 43   b  y g u e  s  t   onM a r  c h 1  8  ,2  0 1  6 h  t   t   p :  /   /  h  e r  . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om  a variety of topics about which they spoke (TableII). Many of these topics addressed patient con-cerns and were patient initiated. Themes includedside effects, indications for use, medication ef-fectiveness, cost, could new medications couldhelp, importance of medications to patients, poly-pharmacy and desire to cut down and potentialinteractions. Patient concerns Side effects Five respondents said their discussions centered onthe medication side effects. This was the themeoffered by three of the five respondents who used10 or more prescription medications. This was alsomuch more common among respondents who hadsome college education (six out of 11). Interviewsshowed that some discussions were physician ini-tiated and some were patient initiated: . every time I go . he asks me how I’m doingand what reactions, if any, am I getting fromthem.You know, I ask   Does it affect my liver, youknow, and stuff  .  Indications for use Two respondents had discussed medication indica-tions with their physician:Well, he did at one time tell me what [the med-ications are for], but I . forgot now. Medication effectiveness Two respondents said that their discussions cen-tered around whether their medications were work-ing for them:I took my medication to the neurologist andtold him about the [medication name] whichwasn’t helping. And I wanted to know . what was I doing wrong? Cost Only one respondent spontaneously offered that they spoke with their physicians about medicationcost in open-ended questioning:We have serious financial difficulty getting them.The money, everything is bad for the money . for the money that the pills costs; that’s the prob-lem . I talked to my doctor that my medicinecosts too much.We also found other patient concerns addressedin medication-related discussions with physicians. New medication Is there any new medicine came in that wouldhelp me more than what I’m taking? Polypharmacy There’s so many of them; when can we start cutting them down? Potential interactions Is this going to be compatible with everythingelse I’m taking? Table II.  Medication-related topics discussed between patients and physicians Number Adherence 8Side effects 5Refills 3Indications 2Medication reconciliation 2Medication effectiveness 2Correct medication use 1Cost 1Could new medications could help me? 1Importance of medications to patient 1Monitoring and laboratory testing 1Polypharmacy and cutting down 1Potential interactions 1Prescribing 1 J. Tjia   et al  . 44   b  y g u e  s  t   onM a r  c h 1  8  ,2  0 1  6 h  t   t   p :  /   /  h  e r  . oxf   or  d  j   o ur n a l   s  . or  g /  D o wnl   o a  d  e  d f  r  om
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