health literacy and heart failure management in patient-caregiver dyads

7
Health Literacy and Heart Failure Management in Patient-Caregiver Dyads JENNIFER B. LEVIN, PhD, 1,2 PAMELA N. PETERSON, MD, 3,4 MARY A. DOLANSKY, PhD, RN, 5 AND REBECCA S. BOXER, MD, MS 4 Cleveland, Ohio; and Denver and Aurora, Colorado ABSTRACT Background: Older adults with heart failure (HF) often need caregivers to assist with care, yet little is known about the health literacy of both patients and their caregivers. The objective of this study was to assess health literacy and the relationship between health literacy and HF self-care in HF patient- caregiver dyads. Methods and Results: Seventeen patient-caregiver dyads were recruited. Dyads completed a measure of HF self-care and 2 measures of health literacy: 3 validated questions and a nutrition label reading task. Patients were older than caregivers and the majority of both patients and caregivers were female. Care- givers had higher health literacy by both the health literacy questions (P 5 .001) and label-reading mea- sure (P 5 .001). All caregivers had adequate health literacy as assessed by the 3 questions, but 29% had inadequate health literacy according to the label-reading task. Caregivers and patients scored adequately in HF maintenance but inadequately in management and confidence domains. Conclusions: Caregivers had better health literacy than patients; however, the task-oriented label-reading measure revealed poorer health literacy than the self-report measure. Measures of health literacy that reflect day to day tasks may be more illuminating than the 3 questions. (J Cardiac Fail 2014;20:755e761) Key Words: Self-care, label reading task. Poor health literacy has important implications for health outcomes such as increased hospitalizations and higher mortality. 1e3 It is estimated that 27%e54% of patients with HF have low health literacy. 2,4e6 As such, the Heart Failure Society of America (HFSA) recently formed a working group to identify and assess the current state of health literacy research and clinical implications of inade- quate health literacy in patients with heart failure (HF). 4 Overall, the health literacy literature specific to HF is rela- tively sparse and there is a great need for research in this area. 4 Those studies that have been conducted with HF patients support the findings that low health literacy is associated with poorer health outcomes. 2,3 The HFSA consensus statement emphasizes that to be able to success- fully participate in illness management, it is vital that a per- son understand health information rather than simply be able to read written material, underscoring the complexity of health literacy. 4 Given that the management of HF requires a multitude of routine self-management tasks, including maintaining a low-salt diet, taking daily weights, a complex medication regimen, and monitoring HF symptoms on a daily basis, From the 1 Department of Psychiatry, Case Western Reserve University School of Medicine, Cleveland, Ohio; 2 Neurological and Behavioral Out- comes Center, University Hospitals Health System, Cleveland, Ohio; 3 Den- ver Health Medical Center, Denver, Colorado; 4 University of Colorado Anschutz Medical Campus, Aurora, Colorado and 5 Case Western Reserve University Frances Payne Bolton School of Nursing, Cleveland, Ohio. Manuscript received April 4, 2014; revised manuscript received July 9, 2014; revised manuscript accepted July 22, 2014. Reprint requests: Jennifer B. Levin, PhD, Department of Psychiatry, University Hospitals Case Medical Center, 10524 Euclid Avenue, Cleveland, OH 44106. Tel: þ1 216-844-5057; Fax: þ1 216-844-1703. E-mail: [email protected] Funding: McGregor Foundation and Neurological Behavioral Outcomes Center at the University Hospitals Health System. See page 760 for disclosure information. 1071-9164/$ - see front matter Ó 2014 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.cardfail.2014.07.009 755 Journal of Cardiac Failure Vol. 20 No. 10 2014

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Page 1: Health Literacy and Heart Failure Management in Patient-Caregiver Dyads

Journal of Cardiac Failure Vol. 20 No. 10 2014

Health Literacy and Heart Failure Managementin Patient-Caregiver Dyads

JENNIFER B. LEVIN, PhD,1,2 PAMELA N. PETERSON, MD,3,4 MARY A. DOLANSKY, PhD, RN,5 ANDREBECCA S. BOXER, MD, MS4

Cleveland, Ohio; and Denver and Aurora, Colorado

From the 1DepaSchool of Medicincomes Center, Univer Health MedicAnschutz MedicalUniversity FranceManuscript rece

2014; revised manReprint request

University Hospi

ABSTRACT

Background: Older adults with heart failure (HF) often need caregivers to assist with care, yet little isknown about the health literacy of both patients and their caregivers. The objective of this study was toassess health literacy and the relationship between health literacy and HF self-care in HF patient-caregiver dyads.Methods and Results: Seventeen patient-caregiver dyads were recruited. Dyads completed a measure ofHF self-care and 2 measures of health literacy: 3 validated questions and a nutrition label reading task.Patients were older than caregivers and the majority of both patients and caregivers were female. Care-givers had higher health literacy by both the health literacy questions (P 5 .001) and label-reading mea-sure (P 5 .001). All caregivers had adequate health literacy as assessed by the 3 questions, but 29% hadinadequate health literacy according to the label-reading task. Caregivers and patients scored adequately inHF maintenance but inadequately in management and confidence domains.Conclusions: Caregivers had better health literacy than patients; however, the task-oriented label-readingmeasure revealed poorer health literacy than the self-report measure. Measures of health literacythat reflect day to day tasks may be more illuminating than the 3 questions. (J Cardiac Fail2014;20:755e761)

Key Words: Self-care, label reading task.

Poor health literacy has important implications for healthoutcomes such as increased hospitalizations and highermortality.1e3 It is estimated that 27%e54% of patientswith HF have low health literacy.2,4e6 As such, the HeartFailure Society of America (HFSA) recently formed aworking group to identify and assess the current state ofhealth literacy research and clinical implications of inade-quate health literacy in patients with heart failure (HF).4

Overall, the health literacy literature specific to HF is rela-tively sparse and there is a great need for research in thisarea.4 Those studies that have been conducted with HF

rtment of Psychiatry, Case Western Reserve Universitye, Cleveland, Ohio; 2Neurological and Behavioral Out-versity Hospitals Health System, Cleveland, Ohio; 3Den-al Center, Denver, Colorado; 4University of ColoradoCampus, Aurora, Colorado and 5Case Western Reserves Payne Bolton School of Nursing, Cleveland, Ohio.ived April 4, 2014; revised manuscript received July 9,uscript accepted July 22, 2014.s: Jennifer B. Levin, PhD, Department of Psychiatry,tals Case Medical Center, 10524 Euclid Avenue,

755

patients support the findings that low health literacy isassociated with poorer health outcomes.2,3 The HFSAconsensus statement emphasizes that to be able to success-fully participate in illness management, it is vital that a per-son understand health information rather than simply beable to read written material, underscoring the complexityof health literacy.4

Given that the management of HF requires a multitude ofroutine self-management tasks, including maintaining alow-salt diet, taking daily weights, a complex medicationregimen, and monitoring HF symptoms on a daily basis,

Cleveland, OH 44106. Tel: þ1 216-844-5057; Fax: þ1 216-844-1703.E-mail: [email protected]: McGregor Foundation and Neurological Behavioral Outcomes

Center at the University Hospitals Health System.See page 760 for disclosure information.1071-9164/$ - see front matter� 2014 Elsevier Inc. All rights reserved.http://dx.doi.org/10.1016/j.cardfail.2014.07.009

Page 2: Health Literacy and Heart Failure Management in Patient-Caregiver Dyads

756 Journal of Cardiac Failure Vol. 20 No. 10 October 2014

adequate health literacy is a necessary condition forsuccessful HF management. Furthermore, given that olderpatients with HF are often dependent on a caregiver for atleast some self-care needs, adequate health literacy in care-givers is also a necessary condition for HF management ofthe patient. Therefore, the study of the patient-caregiverdyad has become an area of increased interest as it relatesto HF self-care management.7

Health literacy measurement is also an important consid-eration and may vary depending on the setting and clinicalpopulation.8 Given the busy nature of HF clinics, a quickand practical validated method to measure health literacyis the most useful.3 Furthermore, it is vital to supplementany measure of health literacy with an assessment of abilityto carry out a self-management task accurately.9 The pre-sent study set out to examine 2 measures of health literacy:3 health literacy questions compared with performance on apractical health literacy task (food label reading).

Patients were recruited from an HF program that hasintense HF care and teaching. It was predicted that the care-givers would have better health literacy than the patientsand that better health literacy in caregivers would be asso-ciated with better HF self-care in patients.

Methods

Subjects and Recruitment

Patients over the age of 65 years, without documented demen-tia, in New York Heart Association (NYHA) functional class IIeIV, and receiving treatment in an academic HF management pro-gram were recruited. The data were collected from October 2012to February 2013. During this period, all consecutive patientsmeeting inclusion criteria were informed about the study by 1 of2 HF doctors. Eligible patients were then recruited by a researchassistant by phone. To qualify for the study, each patient had toidentify 1 primary caregiver and score #7 on the Instrumental Ac-tivities of Daily Living Scale (IADL),10 indicating dependence in$1 IADL. The HF program included documented nurse-driveneducation modules, written materials for patients and caregivers,and patient-specific coaching on self-care needs. All patientswere treated by physicians specializing in HF care. The studywas approved by the University Hospitals Case Medical CenterInstitutional Review Board. Both the caregiver and the patientgave informed consent. Forty-five patients were screened, and29 did not meet inclusion criteria (2 were !65 years old,2 were in NYHA functional class I, 1 was unable to identify acaregiver, 1 scored O7 on the IADL; 2 had known dementia;6 refused to participate, 7 were lost to follow-up (1 died beforecoming to the interview), 4 were currently participating in anotherclinical research study, and 2 were living in a nursing facility).A total of 34 subjects made up of 17 patient-caregiver dyadscomposed our study cohort.

Measures

Caregivers and patients completed the 2 health literacy mea-sures in separate rooms with the assistance of 1 of 2 research as-sistants or the clinical psychologist. The research assistants weretrained to administer the questionnaires by the psychologist andwere observed before the onset of data collection to verify the

accuracy of questionnaire administration. Questions were readverbally to the subjects because of possible impairment in readingskills and/or vision. Subjects pointed to enlarged responses printedon cards which were also read to them aloud. For the label-readingtask, participants were given a copy of the label and asked thequestions aloud. They were also given a copy of the questionsand the option of using a paper and pencil for calculations. Chartsof patients were reviewed to obtain number of clinic visits, docu-mentation of nurse teaching, and emergency department visits/hospitalizations.

IADL10 was used as a screening tool to assess independent-living skills. The measure scores 8 domains of function, includingability to use the telephone, shopping, food preparation, house-keeping, laundry, mode of transportation, responsibility for ownmedications, and ability to handle finances. Scores range from0 to 8, with 8 representing total independence and 0 totaldependence.

Three health care literacy questions11 were administeredverbally to determine health literacy level. These screening ques-tions have been validated as an instrument to rapidly and unobtru-sively assess health literacy by clinical staff with varying levels ofexperience in busy clinical settings.11e13 The questions weredeveloped to focus on a person’s ability to navigate the healthcare system and include:

� How often do you have problems learning about your medicalcondition because of difficulty understanding written informa-tion?

� How confident are you filling out medical forms by yourself?� How often do you have someone help you read hospital mate-

rials?

These self-reported health care literacy questions have highspecificity for detecting inadequate health literacy in variouspopulations,11e13 including in patients with HF.3 Each screeningquestion is graded on a 5-point Likert scale and a total summaryscore is obtained. The sum score was calculated on an ordinalscale (scores 1e5), and based on the literature,3 a cutoff of 10was used to create a dichotomous variable such that $10 wasconsidered to indicate inadequate health literacy.

Newest Vital Sign14 (NVS) is a measure of health literacy con-sisting of 6 questions that test the ability to read, understand, andapply information from a nutrition label. The measure takes w3minutes to administer. The instrument has an internal consistencyscore of 0.76 and has been shown to correlate strongly with theTest of Functional Health Literacy in Adults.13,14 One point isgiven for each correct answer, for a possible total score of 6 points.Those who score O4 are unlikely to have low literacy, where ascore of #4 indicates the possibility of limited health literacy.8,14

A score of !2 is considered to indicate a high likelihood of inad-equate health literacy. The continuous total score was convertedinto a dichotomous variable with scores of !2 considered to indi-cate inadequate health literacy.

The Self-Care Heart Failure Index15 (SCHFI) measures self-care in HF and consists of 15 items with 3 domains of self-care,including self-care maintenance (behaviors to maintain clinicalstability), self-care management (decision-making processregarding symptom changes), and confidence to manage symp-toms. Scores are generated for the 3 subscales. Summary scoresfor each domain are transformed into a subscale ranging from0 to 100, with higher scores reflecting better self-care. Adequatecare is considered to be indicated by scores O70. Internal consis-tency scores range from 0.55 to 0.83 on the subscales. Validity has

Page 3: Health Literacy and Heart Failure Management in Patient-Caregiver Dyads

Table 1. Demographic and Clinical Characteristics of Heart Failure Patients and Caregivers

Variable Patients (n 5 17) Caregivers (n 5 17)

Age, y (mean 6 SD) 80.2 6 5.1 66.9 6 10.46Women, n (%) 10 (58.8%) 12 (70.6%)Race, n (%)African American 11 (64.7%) 11 (64.7%)White 6 (35.3%) 6 (35.3%)

Years of education* (mean 6 SD) 12.8 6 3.6 13.9 6 3.2Patient characteristicsLawton-Brody IADL (mean 6 SD) 4.1 6 1.3Type of heart failure, n (%)Systolic 11 (64.7%)Preserved systolic 6 (35.3%)

Ejection fraction, % (mean 6 SD) 41 6 14NYHA functional class, n (%)II 10 (58.8%)III 7 (41.2%)Ischemic heart disease,y n (%) 10 (58.8%)Afib/Aflut, n (%) 8 (47.1%)HTN, n (%) 16 (94.1%)Diabetes, n (%) 6 (35.3%)Pulmonary disease,z n (%) 9 (52.9%)Depression, n (%) 5 (29.4%)History of falls, n (%) 12 (70.6%)Problems with gait, n (%) 10 (58.8%)Problems with sleep, n (%) 8 (47.1%)Chronic pain, n (%) 9 (52.9%)Incontinence,x n (%) 7 (41.2%)

Caregiver characteristicsZarit Burden Questionnaire, n (%)Little or no burden (0e21) 10 (58.8%)Mild-moderate burden (22e40) 5 (29.4%)Moderate-severe burden (41e60) 2 (11.8)

IADL, Instrumental Activities of Daily Living Scale; NYHA, New York Heart Association; Afib, atrial fibrillation; Aflut, atrial flutter; HTN, hypertension.*Years of education are counted starting in the 1st grade; 12 years 5 high school education.yIschemic heart disease includes patients with any of the following: angina, myocardial infarction, coronary artery bypass graft, percutaneous coronary

intervention.zPulmonary disease includes COPD, asthma, sleep apnea, emphysema.xIncontinence includes either urinary or bowel incontinence.

Health Literacy in Heart Failure Dyads � Levin et al 757

been established.15e17 A modified version of the SCHFI wasadministered to the caregivers. Questions were modified slightlyto be appropriately directed to the caregiver.

Other Measures

The Kansas City Cardiomyopathy Questionnaire18 (KCCQ)measured HF-related health status. The KCCQ is a 23-item ques-tionnaire designed specifically for patients with HF and measures4 clinical domains of health status, including physical limitations,symptoms (frequency, severity, and stability), quality of life com-bined with social limitations, and self-efficacy for disease self-management. For each domain, there are established psychometricproperties.18e20 Scoring for each of the subscales is from 0 to 100,with higher scores indicating better health status. The overall sum-mary score combines the 4 clinical domains.The Zarit Burden Questionnaire21 (Zarit) is a 22-item self-

report measure that assesses the social, physical, financial, andemotional aspects of the perceived burden of the caregiver. TheZarit is a validated tool that was originally developed to measureburden in caregivers of those with Alzheimer disease but hasproven to be reliable in various patient populations.22,23 Eachitem is scored on a Likert scale from 0 to 4, and total scores rangefrom 0 to 88. Scores of 0e21 indicate little or no burden, 22e40mild-moderate burden, 41e60 moderate-severe burden, and61e88 severe burden.

Statistical Analyses

Demographics for patients and caregivers were summarized bymeans and standard deviations for continuous variables and fre-quency and proportions for categorical variables. Comparisons be-tween the 2 groups on common demographics were made with theuse of paired t tests for continuous variables and Fisher exact testfor categorical variables. The health literacy measures were scoredboth as continuous and as dichotomous variables. The relationshipbetween health literacy and HF self-care was evaluated with theuse of 2-tailed paired t tests. All statistical analyses were per-formed with the use of IBM SPSS Statistics 21.

Results

Patient Characteristics

The mean age of patients was 80 6 5 years and meanyears of education 12.7 6 3.6. The majority of patientswere African American (65%), and 59% were female(Table 1). Patients visited the HF management clinic anaverage of 5.4 (SD 4.2; range 2e19) times in the preceding12 months. In 94% of those visits, education was providedand included $1 of the following categories: weight moni-toring, medication management, symptoms, low-sodiumdiet, and physical activity.

Page 4: Health Literacy and Heart Failure Management in Patient-Caregiver Dyads

Table 2. Health Literacy and Heart Failure Management Measures

Measure Patients (n 5 17) Caregivers (n 5 17) P Value

Adequate health literacy (score !10), n (%) 9 (52.9%) 17 (100%) .000Inadequate health literacy (score $10), n (%) 8 (47.1%) 0Label reading, n (%) .001

Inadequate (scored 0e1) 12 (70.6%) 5 (29.4%)Questionable (scored 2e3) 4 (23.5%) 4 (23.5%)Adequate (scored 4e6) 1 (5.8%) 8 (47.1%)

SCHFI, mean 6 SDMaintenance* 73.1 6 10.9 80.4 6 10.8 .02Managementy 58.0 6 20.6 63.0 6 15.3 .39Confidencez 62.1 6 21.9 62.5 6 22.3 .96

SCHFI, Self-Care Heart Failure Index.*Maintenance: carries out behaviors to maintain clinical stability.yManagement: decision making process with regard to symptom changes.zConfidence: confidence in ability to manage HF symptoms.

758 Journal of Cardiac Failure Vol. 20 No. 10 October 2014

All patients were classified as NYHA functional class II(59%) or III (41%). The majority (65%) of patients had sys-tolic HF, and the median time living with HF was 2.75 (in-terquartile range [IQR] 6.67) years. All the patients except1 were hospitalized in the preceding 12 months: 10 (59%)for cardiovascular causes and 5 (29%) specifically for HF.Seven (41%) of the patients had $1 emergency departmentvisit in the preceding 12 months that did not result in hos-pitalization (Table 2). Patient health status as measured bythe overall summary score of the KCCQ was 58.6 6 22.3.

Caregiver Characteristics

The mean age of caregivers was 67 6 10 years and meanyears of education was 13.9 6 3.2. Sixty-five percent of thecaregivers were African American, and 71% were female.The median years of being a caregiver was 3.0 (IQR 2),and all caregivers were family members, with 7 (41%) be-ing a spouse, 7 (41%) a child, and 3 (18%) another familymember. The mean level of burden on the Zarit was22.4 6 12.9, indicating mild-moderate burden; however,the majority of caregivers scored in the range of little orno burden (10/17, 59%; Table 1).

Comparisons Between Patients and Caregivers

Patients were significantly older than caregivers (t 5 4.2[df 5 16]; P 5 .001). There was no statistically significantdifference between patients and caregivers regarding yearsof education, race, or sex.

Health Literacy

The average total score on the health literacy questionswas 9.1 (SD 4.1) for patients and 5.1 (SD 1.8) for care-givers, with higher scores indicative of lower health liter-acy. Eight of 17 patients (47%) scored in the inadequaterange according to the 3-question measure of health liter-acy, whereas none of the caregivers scored in the inade-quate range. With the use of the 3 questions, patientshad lower health literacy than caregivers (t 5 4.6[df 5 16]; P 5 .001). In contrast, with the use of thelabel-reading task, 12 patients (71%) and 5 caregivers

(29%) scored in the inadequate range (Table 2). Theaverage score on the label-reading task was 1.2 6 1.6for patients and 3.3 6 2.2 for caregivers, with higherscores indicative of higher health literacy. On the label-reading task, patients had lower health literacy than care-givers (t 5 �3.9 [df 5 16]; P 5 .001). Years of education(with a high school education being equivalent to12 years) was not correlated with health literacy as as-sessed by the 3 questions for patients or caregivers(rs 5 0.37 [P 5 .07] for patients; rs 5 0.15 [P 5 .28]for caregivers). Years of education was correlated withhealth literacy as assessed by label reading for patientsonly (rs 5 0.73 [P 5 .001] for patients; rs 5 0.23,[P 5 .19] for caregivers).

HF Self-Management

Both caregivers and patients scored adequately in SCHFImaintenance (73.1 6 10.9 for patients and 80.4 6 10.8 forcaregivers) but inadequately in both SCHFI management(60.8 6 20.2 for patients and 62.3 6 16.3 for caregivers)and confidence domains (62.1 6 21.9 for patients and62.5 6 22.3 for caregivers; Table 2). There was a signifi-cant difference between SCHFI maintenance scores, withpatients scoring lower than their caregivers (t 5 �2.6[df 5 16]; P 5 .02) but no differences in either SCHFImanagement or SCHFI confidence scores between patientsand their caregivers.

Relationship Between Health Literacy and HF Self-Management

When caregivers scored poorly on the label-readingtask, the corresponding patients had worse SCHFI main-tenance; for adequate caregiver label reading, the meanpatient SCHFI maintenance score was 76.9, and for inad-equate caregiver label reading the mean patient SCHFImaintenance score was 64.0 (t 5 2.6 [df 5 15];P 5 .02). There was no such association between care-giver health literacy and patient SCHFI management orconfidence scales.

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Health Literacy in Heart Failure Dyads � Levin et al 759

Discussion

This study set out to examine the relationship betweenhealth literacy as assessed by 3 questions and performanceon a practical food label reading task and HF self-care in asample of HF patient-caregiver dyads receiving care froman academic HF program. The patients in this samplewere typical geriatric patients with many chronic problemsin addition to HF that affect day to day caregiving, such asincontinence, falls, and pain. Additionally, the caregiverswere spouses or children and of older age. The agingcaregiver-patient dyad has to be considered in care delivery,instructions, and shared decision making.We found that caregivers had higher health literacy than

patients with HF on both a 3-question measure and a prac-tical label-reading task. This may be because patients wereolder than caregivers, because health literacy has been re-ported to decline with age.24 There was also a notable gapfor both patients and caregivers between health literacy levelas measured by the 3 questions compared with their skill onthe label-reading task, even when using a conservative cutofffor inadequate health literacy on the label-reading task.Although fewer than one-half of the patients weredetermined to have low health literacy according to the 3self-report questions, almost all scored in the inadequate orquestionable range on the label-reading task. Similarly, nocaregivers fell into the inadequate health literacy range basedon the 3 self-report questions, but more than one-half scoredin the inadequate or questionable range on the label-readingtask. A key skill needed on the label-reading task is numericunderstanding and manipulation. Given that the need foradequate numeracy skills is repeated in other HF manage-ment tasks, including tracking weights and making medica-tion dose changes, it is deemed to be of particularimportance in the HF population. Tests of health literacytend to focus on comprehension of medical terms and dis-ease and computation ability and decision making are notroutinely tested. Knowledge of a patient and/or caregiver’sskill level for these tasks is important to appropriately teachthem necessary skills for HF management.It is notable that the dyads in this study received typical

education provided by a disease-management program. TheHF disease-management program followed HF guidelines25

and included documentation of key educational compo-nents of HF disease management delivered to the dyadsby trained HF nurses. The dyad relationship is importantto HF management in the older patients we studied becausethey were dependent on their caregivers on $1 activity ofdaily living, had a high prevalence of geriatric-related con-ditions, and were high users of acute care.In addition to having better health literacy, caregivers had

higher SCHFI maintenance scores than the patients, indi-cating that in these dependent patients, the caregiverswere involved in seeing that the patients were carryingout HF self-care behaviors. This same relationship, howev-er, was not seen in SCHFI management or confidence

scores, indicating that patients and their caregivers didnot differ in either decision making in response to changingHF symptoms nor in confidence to manage symptoms. Anassociation was observed between the ability of the care-givers to carry out a label-reading task and patient scoreson SCHFI maintenance. This suggests that in those dyadsin which the caregiver had adequate label-reading skills,the patients were more likely to carry out necessary HFself-care behaviors.

Although considerable research has been conducted onhealth literacy in patients, little is known about health liter-acy of caregivers for older adults in general or of caregiversfor older patients with HF. Based on clinical observations ofthe authors, caregiving assistance in HF seems to be centralto successful management and acute care avoidance. Lind-quist et al9 assessed the health literacy of paid caregiversand administered a medication-dispensing task to deter-mine competence with a common caregiving task. In thesample of 98 paid nonfamilial caregivers, inadequate healthliteracy was found in 36% of the sample. Similar to our re-sults was the finding that 60% of the sample had difficultyfollowing label instructions and ultimately made errors on apillbox medication test.9 Likewise, Lindquist et al alsofound that patients with inadequate or marginal health liter-acy were more likely to make unintentional medication er-rors.26 These studies emphasize that in order to adequatelyassess a caregiver’s skills to manage HF, both classic healthliteracy measures and practical caregiving tasks should beadministered. Our findings support the need for measuringsuch practical caregiving tasks with an emphasis on tasksrequiring numeric manipulation to determine whether acaregiver has the necessary skill set to manage chronic HF.

Low health literacy has been associated withhigher health service utilization, including emergencycare, increased hospitalizations, decreased likelihood ofreceiving preventative screenings and vaccines, decreasedability to take medications as prescribed, more difficultyin interpreting labels and health messages, and, particularlyfor elderly individuals, poorer health status and higher mor-tality.1,3,27,28 Our findings of inadequate label reading incaregivers being associated with lower patient SCHFImaintenance scores suggest that it is indeed important totarget the patient-caregiver dyad when attempting toimprove patient self-management. This finding is consistentwith a recent qualitative systematic review reporting thatcaregivers are among the important factors affecting patientself-care in HF.29

Several studies have demonstrated a relationship betweenlow health literacy and adverse outcomes among generalmedical patients and patients with HF.28 This associationmay be because adequate health literacy is necessary toperform the complex array of self-care skills involved inHF management. In addition, Ni et al found that althoughtwo-thirds of HF patients report receiving educational in-formation and guidance from their health care providers,many of them did not understand the instructions that

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760 Journal of Cardiac Failure Vol. 20 No. 10 October 2014

they received.30 Similarly, we found that although ourdyads were cared for in a HF management clinic in whichlabel reading was one of the educational activities, a rela-tively large number could not successfully carry out thelabel-reading task.

Although our results are consistent with the health liter-acy literature, some limitations should be noted. First, thesample size was relatively small. Despite the small sample,we were able to detect statistically significant results, sug-gesting that the findings are fairly robust. Another limita-tion is that the psychometric properties of the caregiverversion of the SCHFI had not been established before itsuse. Since then, a caregiver version of the SCHFI hasbeen developed31 and should be used in future studiesthat include caregivers.

In conclusion, we found that in older adult HF patient-caregiver dyads, the caregivers had better health literacythan patients; both caregivers and patients had higherhealth literacy when assessed by 3 questions than whenassessed by a numeracy-related label-reading task; andthe abilities of the caregiver have an impact on patientself-care. It is therefore important to (1) consider whichhealth literacy measure to use when assessing health lit-eracy and (2) measure health literacy in both the patientand the caregiver in this elderly population. The patient-caregiver dyad should be targeted to improve patientoutcomes. Future research should consider methods forimproving caregiver health literacy in general andnumeracy skills specifically to obtain better patient out-comes. Finally, the relationship between health literacyin caregivers and patient health care resource utilizationshould be further explored.

Acknowledgments

The authors gratefully acknowledge the support of theMcGregor Foundation. Special thanks to Jill Bradisse, Bar-bara J. Johnson, and Shirley S. Bochman for their assistancewith recruitment and data collection. Study data werecollected and managed using REDCap electronic datacapture tools hosted at University Hospitals Case MedicalCenter, Clinical and Translational Science Collaborative(CTSC).1 REDCap (Research Electronic Data Capture) isa secure, web-based application designed to support datacapture for research studies, providing 1) an intuitive inter-face for validated data entry; 2) audit trails for tracking datamanipulation and export procedures; 3) automated exportprocedures for seamless data downloads to common statis-tical packages; and 4) procedures for importing data fromexternal sources.

Disclosures

None.

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