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Page 1: Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire

Epilepsy and Behavior 18 (2010) 94–99

Contents lists available at ScienceDirect

Epilepsy and Behavior

j ourna l homepage: www.e lsev ie r.com/ locate /yebeh

Development and validation of the Pediatric Epilepsy MedicationSelf-Management Questionnaire

Avani C. Modi a,b,⁎, Sally Monahan a, Dee Daniels c, Tracy A. Glauser a,b

a Cincinnati Children's Hospital Medical Center-Department of Pediatrics, USAb University of Cincinnati College of Medicine, USAc Denver Children's Hospital, USA

⁎ Corresponding author. Cincinnati Children's HospitBehavioralMedicine and Clinical Psychology, Center for Ad3333 Burnet Ave. MLC 7039, Cincinnati, OH 45229. Fax: +

E-mail address: [email protected] (A.C. Modi).

1525-5050/$ – see front matter © 2010 Elsevier Inc. Aldoi:10.1016/j.yebeh.2010.03.009

a b s t r a c t

a r t i c l e i n f o

Article history:Received 13 February 2010Received in revised form 24 March 2010Accepted 25 March 2010Available online 8 May 2010

Keywords:PsychometricReliabilityValidityFamily managementAdherenceChildrenSeizuresEfficacyBarriersDisease knowledge

Study aims were to describe the development and validation of a Pediatric Epilepsy Medication Self-Management Questionnaire (PEMSQ) for caregivers of children 2-14 years. It was expected that PEMSQscales would have 1) factors with high internal consistency (e.g., Cronbach's alphaN0.70) and 2) moderateassociations with adherence and seizures. Participants included caregivers of 119 children with epilepsy(Mage=7.2 yrs, 36% female, 72% Caucasian) who completed the PEMSQ, demographics questionnaire, andAED adherence was assessed (e.g., electronic monitors, self-report). Factor analysis was conducted andinternal consistency and construct validity were assessed. The final PEMSQ is 27 items with four scales(Epilepsy and Treatment Knowledge and Expectations, Adherence to Medications and Clinic Appointments,Barriers to Medication Adherence, and Beliefs about Medication Efficacy) accounting for 88% variance.Cronbach's alphas ranged from 0.68-0.85. Significant associations were found between PEMSQ scales,adherence, and seizures. The PEMSQ represents the first self-management measure validated for caregiversof children with epilepsy, with clinical and research utility.

al Medical Center, Division ofherence and Self Management,1 513 803 0415.

l rights reserved.

© 2010 Elsevier Inc. All rights reserved.

1. Introduction

Self-management of chronic illnesses, including epilepsy, refers to apatient or family's active involvement in the daily activities they assumeto control the illness and its symptoms, minimize its impact on healthand quality of life, and cope with the disease [1–5]. Specific to epilepsy,self-management refers to the activities required to control seizures andreduce side effects, including taking antiepileptic drugs, engaging inhealthy lifestyle behaviors (e.g., good sleep hygiene), active participa-tion in decision makingwith the healthcare team, and managing stress.The concept of self -management is important because epilepsymanagement primarily occurs in the home environment, not clinicsettings. Thus, it is critical to assesswhat families understand about theirdisease and treatment regimen, their beliefs about the efficacy oftreatment, and facilitators and barriers to adherence. The term self-management will be used throughout the manuscript to refer to bothself- and family-management of epilepsy [4].

While the adult epilepsy literature provides a strong foundation fortheories and measures of self-management [6–8], as well as interven-tions targeted at self-management [9–12], little is known about self-management of pediatric epilepsy. The first step required to assess self-management of pediatric epilepsy is the development of a tool tomeasure the construct. Once a validated tool exists, researchers candetermine predictors of self-management and how self-managementaffects health and psychosocial outcomes for children with epilepsy.

Becausemanagement of epilepsy begins the day of diagnosis, childrenwith new-onset epilepsy and their families are primary targets forassessment and intervention around epilepsymanagement. Thus, the aimof the present study was to describe the development and validation of aPediatric Epilepsy Medication Self-Management Questionnaire for care-givers of children newly diagnosed with epilepsy between 2-14 years ofage. The primary objective was to assess the reliability and validity of thePediatric Epilepsy Medication Self-Management Questionnaire. Specifi-cally, it was expected that the Pediatric Epilepsy Medication Self-Management Questionnaire would have 1) factors with high internalconsistency (e.g., Cronbach's alphaN0.70) and 2) moderate associationswith an objective and self-reported adherence measure (constructvalidity). Other secondary study objectives included examining childage, socioeconomic status, months since epilepsy diagnosis, race, gender,marital status, and seizure type differences on the Pediatric EpilepsyMedication Self-Management Questionnaire.

Page 2: Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire

95A.C. Modi et al. / Epilepsy and Behavior 18 (2010) 94–99

2. Methods and Procedures

2.1. Participants and Procedures

Study participants included 119 children with epilepsy and theirprimary caregivers seen at the New Onset Epilepsy clinic at CincinnatiChildren's Hospital Medical Center (CCHMC). Study inclusion criteriaincluded 1) children 2-14 years of age, 2) absence of significantdevelopmental disorders (e.g., autism, Down syndrome) or comorbidchronic illnesses (e.g., diabetes), 3) willingness to comply with studyprocedures and 4) provision of written informed consent/assent.Families participating in this study were part of a larger longitudinalstudy examining adherence to AED therapy over a two-year period.

Caregivers of children with epilepsy who met inclusion criteriawere approached by study personnel during their scheduled clinicvisit. After obtaining consent, caregivers completed a demographicsquestionnaire and were given a MEMS TrackCap and bottle to beginelectronically monitoring adherence to their prescribed treatment.Caregivers were made aware that the bottle monitored medicationtaking. As a part of routine clinical care, patients returned to clinicapproximately one-month post-diagnosis and every three monthstherafter for follow-up appointments. Research study visits coincidedwith follow-up clinic appointments for the longitudinal study, atwhich time the primary caregivers completed a series of question-naires, including the Pediatric Epilepsy Medication Self-ManagementQuestionnaire. Because children in this studywere at varying stages ofthe longitudinal protocol, the last assessment point in which themeasure of interest was completed (e.g., Pediatric Epilepsy Medica-tion Self-Management Questionnaire) was used in current analyses.Caregivers received a $10 gift card for completing the questionnairesand $10 for bringing back the MEMS TrackCaps for a total of $20. Theprotocol and consent forms were approved by the CCHMC Institu-tional Review Board.

2.2. Measures

2.2.1. Demographic Background QuestionnairePrimary caregivers completed a background questionnaire doc-

umenting the child's race/ethnicity, age, caregiver marital status, andcaregiver level of education. Adequate data were available to calculatethe Revised Duncan (TSEI2; [13]) for each family, which is anoccupation-based measure of SES [14]. Scores range from 15 to 97with higher scores representing greater occupational attainment. Fortwo-caregiver households, the higher Duncan score was used inanalyses.

2.2.2. Pediatric Epilepsy Medication Self-Management QuestionnaireThis instrumentwasdeveloped by the current investigators to assess

how caregivers manage their children's seizures for children 2-14 yearsof age. Item content for the original 40-item measure was based onexpert advice from pediatric epileptologists and nurse practitioners, aswell as the extant pediatric literature regarding disease management.There was a core set of items that included the assessment ofcommunication with healthcare providers, barriers and facilitators oftreatment adherence, beliefs aboutmedications, expectations regardingtreatment, and comfort with the treatment regimen. Two response setswere used on the questionnaire: “Strongly disagree” to “Strongly agree”or “never” to “always”. Caregiversof childrenandadolescents between2and 14 years of age completed the measure.

2.2.3. Electronic MonitoringThe Medication Event Monitoring Systems (MEMS® 6 TrackCap)

made by AARDEX Corporation is an electronic monitoring system thatmeasures the dosing histories of patient prescribed oral medications.It was used to monitor adherence to AEDs for the current study. It hastwo components: a standard plastic vial with a threaded opening and

a closure for the vial that contains amicro-electronic circuit to registerthe dates and times the bottle is opened and closed. The MEMSTrackCap stores times and dates for up to 3518 events for a period of36 months and the data can be transferred to a Windows-basedcomputer. Data from the MEMS TrackCap were downloaded at allfollow-up clinic visits. It is important to note that the MEMS®TrackCap did not account for the number of capsules taken each day;it was assumed that patients extracted the correct number of capsules.Adherence was calculated for the 30 days preceding completion of thePEMSQ with rates ranging from 0-100%.

2.2.4. Self-Reported AdherenceCaregivers were also asked to complete an ad-hoc question

regarding how many AED doses their child missed in the past week.This question was used to calculate self-reported adherence [(# ofdoses prescribed per week- # of doses missed)/# of doses prescribedper week)], which ranged from 0-100%.

2.2.5. Seizure HistorySeizures experienced between clinic visits were documented with

the following two methods. First, a chart review was conducted toassesswhen caregivers called the healthcare team to inform them thata seizure had occurred. In addition, all families were given a seizurecalendar to chart seizures. Combined, this information was used tocalculate the presence or absence of seizures in the 3 months prior tocompletion of the Pediatric Epilepsy Medication Self-ManagementQuestionnaire.

2.3. Statistical and Data Analyses

Descriptive statistics (means and standard deviations) were usedto characterize demographic variables. Exploratory factor analysesusing principal axis factoring with promax rotation were performedon the 40-item pool. Items were deleted for several reasons, includinglow factor loadings (≤ .40;[15]) and high cross-loadings (i.e. when theoriginal loading was below 0.50 and a cross-loading was N 0.40 onanother scale). After determination of a meaningful factor structure,internal consistency coefficients using Cronbach's alpha were calcu-lated for each scale. Although coefficients of rN0.70 are recommended[16], Ware and colleagues have suggested that alpha coeffi-cients≥0.60 are considered acceptable for newly developed scales[17]. To examine construct validity, Pearson's product momentcorrelation coefficients were calculated to determine the relationshipbetween objective adherence measured via MEMS TrackCaps, self-reported adherence and Pediatric Epilepsy Medication Self-Manage-ment Questionnaire subscales. Validity was assessed via independentsamples t-tests between childrenwho had experienced seizures in the3-months preceding the assessment compared to those who had notexperienced a seizure on Pediatric Epilepsy Self-Management scales.Secondary exploratory analyses included calculating Pearson correla-tions to examine the relationship between child age, socioeconomicstatus, months since epilepsy diagnosis, and Pediatric EpilepsyMedication Self-Management Questionnaire scales, as well as multi-variate analyses of variance (MANOVA) to examine race, gender,marital status, and epilepsy type differences in seizure management.Analyses were performed using SAS (version 9.1, 2002-2003, Cary,NC) and SPSS statistical software (version 14.0, 2006, Chicago, IL).

3. Results

3.1. Participants

Of the 127 potential participants, 122 agreed to participate,indicating a recruitment rate of 96% for the longitudinal study. Ofthe 122 participants, three participants did not return for follow-up tothe epilepsy clinic; thus, no research data were available for these

Page 3: Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire

Table 1Demographic data on children with epilepsy and their caregivers (n=119).

N M (SD) %

Child Age (years) 7.2 (2.9)Child SexGirls 43 36Boys 76 64

Child Race/EthnicityWhite: Non-Hispanic 86 72White: Hispanic 4 3Black 20 17Asian 1 1Biracial/Multiracial 8 7

Seizure TypePartial 69 58Generalized 30 25Unclassified 20 17

Prescribed Antiepileptic DrugCarbamazapine/Carbatrol 53 44Valproic Acid 44 37Levetiracetam 9 8Oxcarbazepine 3 2Ethosuximide 2 2Gabapentin 1 1Lamotrigine 1 1Topiramate 6 5

Time Since Diagnosis (months) 12.57 (8.7)Participating CaregiverMother 101 85Father 14 12Great Aunt/Other 4 3

Marital StatusMarried 78 66Separated/Divorced 17 14Single/Never Married 23 19Widowed 1 1

Duncan score⁎ 53.02 (20.1)

⁎ Based upon Duncan TSEI2 for head of household, a measure of occupational attainment.Themean TSEI2 score reflects occupations such as propertymanagers, physician's assistants,mail carriers, sheriffs/law enforcement and fire prevention occupations.

Table 2Pediatric Epilepsy Self-Management Questionnaire: Exploratory Factor Loadings.

Note: Bold-faced and shaded text represents the factor loading of the item on its intended

96 A.C. Modi et al. / Epilepsy and Behavior 18 (2010) 94–99

children. The final sample included 119 participants. A summary ofdemographic characteristics of participants are presented in Table 1.

3.2. Factor Analysis

An exploratory factor analysis was conducted to examine 40 itemson the Pediatric Epilepsy Medication Self-Management Questionnairefor 119 participants. Eigenvalues over one and scree plot datasupported the use of a four to six factor solution. Each of thesesolutions was examined with respect to the pattern of item loadings,cross loadings, and conceptual meaning. A four-factor solution waschosen because it separated a moderate number of items into factorsthat were statistically distinct and interpretable. Initial items wereremoved if item loadings were less than 0.40 or significant crossloadings occurred. This resulted in a final instrument with 27 items forcaregivers of children 2-14 years of age.

3.3. Pediatric Epilepsy Medication Self-Management Questionnaire Scalesand Items

The Pediatric Epilepsy Medication Self-Management Question-naire (PEMSQ) is a 27-itemmeasure consisting of four scales: Epilepsyand Treatment Knowledge and Expectations (8 items), Adherence toMedications and Clinic Appointments (8 items), Barriers to Medica-tion Adherence (8 items), and Beliefs about Medication Efficacy (3items). These four scales make up a Total Self-Management score. Thescales, corresponding items, and item loadings of the factor analysisare presented in Table 2. The percentage variance accounted for by the27-item measure was 88%. Internal consistency coefficients (e.g.,Cronbach's alpha) for each scale were moderate to strong and arepresented in Table 3. Internal consistency was lowest for the Beliefsabout Medication Efficacy Scale (α=0.63) and highest for Epilepsyand Treatment Knowledge and Expectations (α=0.93). Factorintercorrelations ranged from .23 to 0.85 (see Table 4).

scale.

Page 4: Development and validation of the Pediatric Epilepsy Medication Self-Management Questionnaire

Table 3Pediatric Epilepsy Self-Management Questionnaire: Means (SD) and ReliabilityCoefficients.

Scale Mean (SD) Cronbach's Alpha

Epilepsy and Treatment Knowledgeand Expectations

35.52 (4.79) 0.93

Adherence to Medications andClinic Appointments

36.24 (4.14) 0.87

Barriers to Medication Adherence 36.25 (3.81) 0.76Beliefs about Medication Efficacy 12.51 (2.42) 0.63Total Self-Management 120.53 (11.22) 0.85

97A.C. Modi et al. / Epilepsy and Behavior 18 (2010) 94–99

The Epilepsy and Treatment Knowledge and Expectations scaleassessed caregivers’ perceptions of their understanding of epilepsy andantiepileptic drug therapy, their expectations about managing thedisease and their ability tomanage the disease in conjunctionwith theirhealthcare teams. The Adherence to Medications and Clinic Appoint-ments scale assessed caregivers’ perceptions of adhering to theprescribed treatment regimen and attending regularly scheduledfollow-up clinic appointments. The Barriers to Medication Adherencescale assessed caregivers’perceptionsof things thatmake it difficult (e.g.barriers) for their child to take medications as prescribed. The BeliefsaboutMedication Efficacy scale assessed caregivers’ perceptions of howwell they believe the medication will work to treat seizures. Finally, theTotal Self-Management scale is a compilation of the 4 core scales. Allscores are based on raw values, which are added together to make upthe score for a particular scale. Items on the Barriers to MedicationAdherence scale are reverse scored for consistency. Scores range from8-40 for the Epilepsy and Treatment Knowledge and Expectations,Adherence to Medications and Clinic Appointments, and Barriers toMedication Adherence scales. Scores ranged from 3-15 for the Beliefsabout Medication Efficacy and 27 – 135 for the Total Self-ManagementScale. Higher scores represent better medication self-management.

3.4. Construct Validity

Significant associations were found between objective, electronically-monitored adherence and Pediatric Epilepsy Self-Management scales:Adherence to Medications and Clinic Appointments scale (r=0.22,pb .05), Barriers to Medication Adherence Scale (r=0.27, pb .01), TotalSelf-Management Scale (r=0.24, pb .01). In addition, self-reportedadherence was significantly associated with Adherence to Medicationsand Clinic Appointments scale (r=0.28, pb .01), Barriers to MedicationAdherence Scale (r=0.35, pb .0001), Beliefs about Medication Efficacyscale (r=0.35, pb .0001), and Total Self-Management Scale (r=0.32,pb .001). Specifically, as both self-reported and objectively measuredadherence to AED therapy increased, self-management related tomedication and clinic appointment adherence increased, barriers de-creased (higher scores represented less barriers), beliefs aboutmedicationefficacy increased and total self-management scores increased.

Table 4Pediatric Epilepsy Self-Management Questionnaire: Scale Intercorrelations.

Pediatric Epilepsy Self-Managem

Epilepsy and TreatmentKnowledge and Expectations

AM

Epilepsy and Treatment Knowledge and ExpectationsAdherence to Medications 0.71***Barriers to Medication Adherence 0.23* 0Beliefs about Medication Efficacy 0.37*** 0Total Self-Management 0.85*** 0

Note. * pb .05, **pb .01, ***pb .001.

Independent samples t-tests indicated a significant difference inthe Epilepsy and Treatment Knowledge and Expectations scalebetween children who had seizures versus those who did not haveseizures in the three months preceding the assessment, t (116)=2.45, pb0.05. Specifically, caregivers of children who experiencedseizures had lower knowledge and expectation scores (n=28;M=33.8, SD=6.8) than those who had not experienced a seizure(n=90; M=36.2, SD=3.7). No significant group differences werefound for the other PEMSQ scales.

3.5. Sociodemographic and Disease Differences

No significant correlations were found between child age, socioeco-nomic status and Pediatric Epilepsy Self-Management scales. However,significant positive correlations were revealed between time sincediagnosis and several Pediatric Epilepsy Self-Management scales,including Epilepsy and Treatment Knowledge and Expectations(r=0.25, pb .01), Beliefs about Medication Efficacy (r=0.32,pb .0001), and Total Self-Management (r=0.23, pb .05). These datasuggest that the longer a child has epilepsy, the more their caregiversknow about epilepsy and its treatments and the more they believemedications will be effective. No significant gender (Hotelling's T=.03,F (4, 114)=0.86, p=0.49), race (e.g., white versus minority status;Hotelling's T=.05, F (4, 114)=1.48, p=0.21), marital status (e.g.,married versus non-married; Hotelling's T=.03, F (4, 114)=0.74,p=0.57), or epilepsy type (e.g., partial, generalized, unclassified;Hotelling's T=.06, F (8, 224)=0.83, p=0.58) differences were foundon any Pediatric Epilepsy Self-Management scales.

4. Discussion

The Pediatric Epilepsy Medication Self-Management Question-naire is the first measure to our knowledge to assess aspects of self-management that are likely salient to a pediatric epilepsy population,including understanding of epilepsy and its treatment, adherence toAEDs, beliefs about the efficacy of treatment, and barriers totreatment. Preliminary results demonstrate that the PEMSQ hasstrong psychometric properties, including good internal consistencyamong scales and construct validity with objective and subjectivemeasures of adherence. Thus, the PEMSQ likely has both clinical andresearch utility in neurology practices.

The PEMSQ is comprised of four scales, including Epilepsy andTreatment Knowledge and Expectations, Adherence to Medicationsand Clinic Appointments, Barriers to Medication Adherence, andBeliefs about Medication Efficacy. The first step regarding epilepsymanagement is understanding the disease and recommended treat-ments, as well as expectations. While the pediatric chronic illnessliterature has unequivocally stated that knowledge is not sufficient toimprove self-management and adherence behaviors [18–21], it is stillrecognized as a necessary component of self-management. In fact,studies in pediatric epilepsy have demonstrated that caregivers report

ent Questionnaire Scales

dherence toedications

Barriers to MedicationAdherence

Beliefs aboutMedication Efficacy

Total Self-Management

.25**

.39*** 0.25**

.84*** 0.59*** 0.61***

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98 A.C. Modi et al. / Epilepsy and Behavior 18 (2010) 94–99

needing more information about their child's disease [22] with only29% of caregivers of children with epilepsy knowing the name or doseof their child's current medication. Thus, this scale in particular canhelp guide clinicians regarding education efforts to address deficits ina caregivers’ knowledge about epilepsy or epilepsy treatment.

The second scale represents one of the most important aspects ofself-management for children with epilepsy-adherence to both AEDsand clinic appointments. Items on this scale elucidate caregivers’perceptions regarding their agreement with the treatment plan andability to follow treatment recommendations, as well as theirconfidence in AED treatment. This scale was significantly andpositively correlated with both subjective and objective measures ofadherence, suggesting strong clinical validity. Similarly, the Barriers toMedication Adherence scale suggested that lower adherence rates,measured both subjectively and objectively, was related to morebarriers. Specifically, this scale identifies potential reasons that self-management may be difficult for families. For example, commonlyreported barriers, such as forgetting [23] or competing activities [20],could be identified and teams are encouraged to problem-solvearound such barriers. Newer technologies, such as cell-phonereminders and text-messaging services, or organizational strategies(e.g., pillboxes) may prove useful around forgetting to take AEDs.

The final scale on the PEMSQ is the Beliefs about MedicationEfficacy scale, which assesses perceptions about how well caregiversbelieve the medication will treat seizures. This perception may play akey role in how patients manage epilepsy. For example, two adultstudies demonstrated that adherence improves when AED therapy isperceived to be beneficial [24,25]. In contrast, personal negative viewsabout treatment efficacy may compromise AED adherence in children[26,27]. The perceived importance of AED therapy and the stigmaassociated with an epilepsy diagnosis also influence self-reportedadherence behaviors. Thus, the Beliefs about Medication Efficacy scalemay serve as a useful tool to provide further insight into the health-related beliefs that influence epilepsy management.

Additional analyses considered whether pediatric epilepsy self-management varied by age, socioeconomic status, gender, race,caregiver marital status, epilepsy type, seizure absence/presence,and time since diagnosis. As expected, children who had epilepsy for alonger duration had caregivers who perceived themselves to be moreknowledgeable about epilepsy and its treatments and believed AEDswere an effective treatment. In addition, children who experiencedseizures in the three months prior to completion of the PEMSQ hadcaregivers who perceived less knowledge and lower expectationsabout epilepsy and its treatment. This implied that when children areexperiencing seizures, caregivers are likely to be more anxious andless confident about their ability to manage epilepsy.

Within a clinical setting, the PEMSQ can be utilized in a number ofways to inform clinical care. For example, the measure is relativelybrief (e.g., 27 items) and allows a caregiver to describe critical aspectsof family management of pediatric epilepsy. This may serve to notonly guide clinical decision-making but provide a tool to improvecaregiver/patient-provider communication around current familyconcerns. For example, if a caregiver scores lower regarding theirbeliefs about medication efficacy, it may provide clinicians anopportunity to discuss why the caregiver doesn't believe themedication will work and/or make decisions with the caregiverabout changing to a new medication. Further, from a providerperspective, the PEMSQ is of low cost, easy to score and interpret,and therefore presents minimal burden for use within a clinicalsetting.

Although the PEMSQ represents the first pediatric epilepsy self-management measure developed and validated for caregivers ofchildren and young adolescents with epilepsy, the study has somelimitations, including 1) children were within the first two years oftheir diagnosis, 2) data collection occurred at one site, 3) youth werebelow 14 years of age, and 4) epilepsy management was focused on

medications and did not include lifestyle behaviors (e.g., sleephygiene). Children with intractable epilepsy or those who are olderadolescents likely have different perceptions regarding epilepsymanagement. In fact, assessing an adolescent's own perceptionsabout disease management is an important direction for futureresearch because caregiver and adolescent perspectives often differaround this issue. This study represents initial psychometric evalu-ation of the PEMSQ. Additional studies should address test-retestreliability and confirm the factor structure.

Acknowledgements

Funding/Support: This research was funded by a grant from theNational Institutes of Health (K23HD057333). We would like toextend our deepest appreciation to the children with epilepsy andtheir families who participated in this study. We thank JulieKoumoutsos, Elizabeth Painter, Julie Adcock, and Shanna Guilfoylefor recruiting participants and collecting their data. We also thank thehealthcare team involved in the medical and psychosocial care ofchildren with new-onset epilepsy who facilitated the currentresearch, including Diego Morita, MD, Sondra Weingartner, MSW/LSW, Amy Hankins, RN, and Lisa Heaton, RN.

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