- Email: [email protected]
Health Literacy, Knowledge, and Patient Satisfaction Before Kidney Transplantation
Health Literacy, Knowledge, and Patient Satisfaction Before Kidney Transplantation J. Jonesa, N. Rosaasenb, J. Taylorc, R. Mainrad, A. Shokerd, D. Blackburnc, J. Wilsone, and H. Mansellc,* a Red Deer Regional Hospital Centre, Alberta Health Services, Red Deer, Alberta, Canada; bSaskatchewan Transplant Program, St. Paul’s Hospital, Saskatoon, Saskatchewan, Canada; cCollege of Pharmacy and Nutrition, dDivision of Nephrology, Department of Medicine, and eDepartment of Curriculum Studies, College of Education, University of Saskatchewan, Saskatchewan, Canada
ABSTRACT Background. Poor health literacy is associated with inferior outcomes in kidney transplant recipients, and knowledge remains suboptimal in this population. The goal of this study was to characterize the health literacy, kidney transplant knowledge, medication beliefs, and education satisfaction in a cohort of patients waiting to undergo kidney transplantation. Methods. All patients on the wait-list in 1 Canadian center were invited to participate in the study. A research assistant administered the Short Test of Functional Health Literacy in Adults and its numeracy section, the Beliefs about Medicines Questionnaire, the Kidney Transplant Understanding Tool, and questions regarding satisfaction. Descriptive and univariate statistics were calculated between demographic variables and the assessments. Results. Thirty-nine percent of patients (41 of 106) patients participated in the study. Overall, 95% and 86% were defined as having adequate health literacy and numeracy, respectively. The mean score on the Kidney Transplant Understanding Tool was 79%, and the majority (97.4%) had strong beliefs regarding the necessity of medication and little concern about adverse effects (73.8%). Participants with higher literacy scores had increased knowledge (r ¼ 0.52; P ¼ .05), understanding of why antirejection pills are necessary (r ¼ 0.38; P ¼ .05), and confidence about taking posttransplant medications (r ¼ 0.32; P ¼ .05). Overall, 30.7% were unsatisfied with their education regarding medications, and 22.5% were unsatisfied with what to expect after the transplant. Conclusions. Before transplantation, health literacy, transplant knowledge, and scores on the Beliefs about Medicines Questionnaire were high in this cohort of patients. However, patient satisfaction regarding educational content remained suboptimal.
N
INETY PERCENT OF PATIENTS WITH end-stage renal disease favor transplantation as their method of treatment [1]. Indeed, kidney transplantation provides superior outcomes compared with other renal replacement therapies [2]. This is not to say that transplantation is without challenges. In addition to the inherent risk of the transplant operation, posttransplant care is complicated and typically lifelong. Thus, improving patients’ knowledge of their transplant treatments is often an important factor in achieving successful transplant outcomes. Ideally, patients should understand how to appropriately administer their transplant medications, how to monitor the health of their graft, and how to incorporate transplant-specific lifestyle 0041-1345/16 http://dx.doi.org/10.1016/j.transproceed.2016.07.018
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behavior changes. To be successful, they must be able to understand terminology and concepts relating to transplants [3]. In addition, patients must be empowered to actively participate in their own care [4] and to communicate effectively with their health care team [5]. Health literacy (HL) is the ability to access, comprehend, evaluate, and communicate information as a way to promote, maintain, and improve health in a variety of
*Address correspondence to Holly Mansell, BSP, PharmD, E3132 Health Sciences, 104 Clinic Place, Saskatoon, SK S7N 2Z4, Canada. E-mail: [email protected] ª 2016 Elsevier Inc. All rights reserved. 230 Park Avenue, New York, NY 10169
Transplantation Proceedings, 48, 2608e2614 (2016)
HEALTH LITERACY, KNOWLEDGE, AND PATIENT SATISFACTION
settings across the life course [6]. Low HL seems to be exceedingly common in Canada, affecting w60% of adults and 88% of seniors [7]. The potential consequences of low HL include limited knowledge regarding medical conditions [8], poorer health status [9] and self-management skills [10], and increased nonadherence [11], hospitalizations [12], health care costs [13], and mortality rates [14]. These findings have remained consistent when adjusting for confounding sociodemographic factors [15]. Low HL is common among patients requiring renal replacement therapy, with studies indicating that limited HL may occur in up to 50% of these patients [16]. Low HL has been associated with increased blood pressure [17], more missed dialysis sessions, and frequent emergency visits [18] in patients receiving dialysis. The actual prevalence of limited HL specifically in patients listed and waiting for a kidney transplant, however, has not been established. Miller-Matero et al [19] discovered limited reading and math ability in 27.5% and 42.8% of patients being considered for various types of solid organ transplants, respectively. This study was conducted at the beginning of the transplant process (before listing), and these results may not be generalizable to other stages of the transplant process. Patients on the kidney transplant wait-list have completed a rigorous screening process to become listed for transplantation, and limited HL has been shown to be a significant predictor of both being listed for transplant and receiving a kidney [20]. The goal of the present study therefore was to determine the HL of the wait-listed patients. We also aimed to assess kidney transplant knowledge, medication beliefs, and patient satisfaction with current educational levels of information in this population. The results of this baseline analysis will be used to guide future educational initiatives and identify opportunities for targeting education in this population. PATIENTS AND METHODS The protocol for the study was approved by the regional ethics board (protocol number BEH-14-475). All patients on the kidney transplant wait-list between April 1, 2015, and September 30, 2015, were eligible to participate in the study. Potential participants were mailed a letter describing the study; w2 weeks later, they were contacted by a research assistant to ask about participation, obtain consent, and to schedule a face-to-face appointment for patients wishing to participate in the study. The research assistant administered a 4-part questionnaire to consenting participants during a dialysis treatment or clinic visit to the Saskatchewan Transplant Program in Saskatoon or Regina. The 4-part questionnaire consisted of a knowledge questionnaire (the Kidney Transplant Understanding Tool [K-TUT]), the Education Satisfaction Assessment, the Beliefs about Medicines Questionnaire (BMQ), and the Health Literacy and Numeracy Assessment, which are further described in the following sections. A Tim Horton’s $15 coffee card was provided as incentive for participation.
HL and Numeracy Assessment HL was assessed by the trained research assistant using the Short Test of Functional Health Literacy in Adults (S-TOFHLA) [21].
2609 The S-TOFHLA, which has similar reliability and validity to the full version [22], is more practical because of the shorter completion time of 7 to 10 min [21]. We scored the S-TOFHLA as follows: scores <16 represented inadequate literacy, scores of 17 to 22 represented marginal literacy and scores 23 indicated adequate health literacy. Because renal transplant recipients must be capable of comprehending numerical directions (eg, to interpret laboratory information, adjust doses of medications), the numeracy section of the original TOFHLA [22] was also used in this study. During this section of the test, cue cards of prescription labels were supplied, and the patient was asked to respond to corresponding questions. Scores of 0 to 9, 10 to 12, and 13 to 17 represented inadequate numeracy, marginal numeracy, and adequate numeracy, respectively. The health numeracy assessments were audio-recorded and, to ensure anonymity, the numeracy and literacy results were verified by an additional research assistant who was blinded to patient identity.
Kidney Transplant Knowledge Assessment After an exhaustive search of the literature, the K-TUT was developed by the research team because no validated tool currently exists to assess knowledge of kidney transplantation. To gather evidence of face and content validity, the instrument was reviewed by w40 members of the Saskatchewan Transplant Program and Saskatoon Health Region, including 3 nephrologists, 3 surgeons, 16 nurses, and 3 pharmacists with extensive knowledge of transplantation. The measure was subsequently reviewed by 10 transplant recipients, and small modifications were made. The final version of the instrument consisted of 9 true or false questions and 14 multiple-choice questions (each with >1 potential answer, equating to a potential score of 69) regarding immunosuppressive medications and lifestyle recommendations necessary for optimal transplant outcomes. One point was given for each correct answer chosen. Because the present analysis was the first formal examination of the tool in a study, determination of adequate knowledge was not identified at this juncture.
BMQ Analysis The BMQ, as developed by Horne et al [23], is an 18-item instrument used to measure cognitive representation of medication of a patient’s own medication and beliefs about medication in general. It has been validated for use in patients with chronic illnesses and has been shown to predict adherence to treatment in certain populations, such as those with asthma, rheumatoid arthritis, severe mental disorders, and (more recently) kidney transplantation [24e26]. The first part of the questionnaire (BMQ-specific) evaluates the patient beliefs about their own medications, and the second part (BMQ-general) assesses the patient beliefs of medicines in general. The BMQ-specific has 2 themes; the first assesses perceptions of medication importance (BMQ-specific necessity), and the second theme describes the patients’ potential concern for harm and adverse effects (BMQ-specific concern). Each theme generates a score ranging from 5 to 25. Likewise, the BMQ-general consists of 2 domains, with the BMQ-general overuse scale assessing patient concern regarding overuse of mediations and the BMQ-general harm domain assessing patient beliefs about the harmful nature of medication in general. The scores in this section of the questionnaire range from 4 to 20, with a higher score indicating a more negative perception about medicines in general. A BMQ necessity-concerns differential was also calculated as the difference between the BMQ-specific necessity and BMQ-specific
2610 concerns scales [27]. This score ranges from 20 to 20, with a positive score indicating that the benefits of the medication outweigh the cost, and a negative score indicating that the patient perceives the cost to be greater than the benefit.
Education Satisfaction Survey The goal of the Education Satisfaction Survey, which was created by the research team, was to identify perceived gaps in site-specific education, identify patient access to technology, determine the best way to disseminate transplant information, and provide pretransplant patients with the ability to provide input regarding education. This survey comprised 4 questions rating perceived satisfaction with the current education on a Likert scale of 1 to 5 (completely disagree to completely agree) and 2 open-ended questions allowing the potential recipient to provide additional feedback regarding educational needs. The qualitative feedback from these questions was reviewed and categorized to identify common themes.
Statistical Analysis Data analysis was conducted by using SPSS version 23 (IBM SPSS Statistics, IBM Corporation, Armonk, NY, United States). Results were described as percentages and mean standard deviation. Because patients were encouraged to answer only the questions they were comfortable with, demographic queries, HL, numeracy, and BMQ scores produced a variety of denominators. Missing data for the KKTQ were handled differently because the questionnaire consisted of 23 questions, with a total of 69 items, and missing a single question would have resulted in the exclusion of that patient. Hence, mean imputation was used for this portion of the questionnaire. Group differences between demographic variables and the assessment scores were calculated by using the Student t test or 1-way analysis of variance (for >2 groups). The researchers had originally planned to analyze HL and numeracy data categorically (adequate, marginal, or inadequate). However, because a high proportion of participants displayed adequate HL and numeracy, the choice was made to treat these measures as a continuous variable instead. Relationships between the scales of HL, numeracy literacy, knowledge, and BMQ scores were examined by using the Pearson correlation. Cronbach’s alpha was calculated to determine the internal consistency of the knowledge questionnaire.
RESULTS
Of 113 individuals on the kidney transplant wait-list during the study time period, 7 were deemed ineligible to participate because they were transplanted (n ¼ 5), dead (n ¼ 1), or delisted (n ¼ 1). Of the remaining patients on the kidney transplant wait-list during the 6-month period, 41 participated in the survey, providing a response rate of 38.9%. Table 1 presents patient demographic characteristics. HL and Numeracy
HL scores as measured by using the S-TOFHLA were high in this cohort, with 95% of the group having adequate HL. The mean HL score was 32.6 4.5. Eighty-six percent of the cohort had adequate numeracy (as measured by using the TOFHLA), with a mean numeracy score of 14.4 2.4 (Table 2).
JONES, ROSAASEN, TAYLOR ET AL
Kidney Transplant Knowledge
The mean score on the K-TUT was 54.9 6.4 (of 60), which converted to a score of 79%. Cronbach’s alpha of the measurement items was 0.801, which indicates good internal consistency of the questionnaire. The majority of the questions were answered by all 41 respondents; all questions with the exception of 1 achieved a response rate of at least 90%. Question 6 (“True or false: your transplant kidney is also called a graft”), however, achieved a response rate of 87.8%. Beliefs of Medicines
The mean score on the BMQ-specific necessity scale was 20.6 3.13, and nearly all participants (97.4%) had strong beliefs in the necessity of their medication for maintaining health (as defined by scores greater than the scale midpoint). The majority of the sample (73.8%) did not have strong concerns about the potential adverse effects of using their medications (scores lower than the scale midpoint) and perceived the necessity to outweigh the concerns (positive values for the necessity-concern differential.) The majority of the participants did not have strong concerns about the overuse of medications (86.5%) or potential for harm of medications in general (100%) (scores lower than the scale midpoint) (Table 2). Satisfaction Level
In general, participant responses were mixed regarding their levels of satisfaction. Forty-three percent were satisfied with the information they had received regarding transplant medications (agree or agree completely), 30.7% were unsatisfied (disagree or disagree completely), and nearly one-quarter (25.6%) remained neutral. One-half of the participants (55%) were happy (agree or agree completely) with their education regarding transplant expectations such as clinic appointments, bloodwork, and lifestyle modifications; 22.5% percent stated that they were unsatisfied (disagree or disagree completely); and 22.5% remained neutral. Almost all participants felt confident (agree or agree completely) that they would be able to take their transplant medications as prescribed (97.5%) and understood why they must take antirejection pills after the transplant (95%). Patients were given the opportunity to identify information that was potentially missing during their pretransplant education and to comment on their education in general. Eight patients requested more regular updates on information. As 1 patient explained “It might be good to provide the patient information about transplant every 3e5 years or so. When I was put on the list 8 years ago I was told about the process but since then I can’t remember being explained about it at all.” Seven participants commented that more information regarding the wait-list process would be beneficial, including an explanation about the process for waitlist placement and donor matching, expected wait times, more information on the transition process from dialysis,
HEALTH LITERACY, KNOWLEDGE, AND PATIENT SATISFACTION
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Table 1. Patient Demographic Characteristics Characteristic
Age, y Sex (n ¼ 40) Male Female Race (n ¼ 40) White Filipino Aboriginal South Asian Black Latin American Other English as a first language (n ¼ 40) Yes No Occupation (n ¼ 41) Working Retired Temporarily cannot work Disability income Unemployed Education (n ¼ 40) Middle school High school Some other continuing education after high school University Marital status (n ¼ 41) Single, never married Married/cohabitating Separated/divorced Widowed/widower Yearly income (n ¼ 37), $ 10,000e24,000 25,000e49,999 50,000e74,999 75,000e99,999 >100,000 Support person (n ¼ 41) Yes No Residence (n ¼ 39) Rural community Urban community Length of time waiting for transplant (n ¼ 41), y <1 >1e3 >3e5 >5e10 >10 Presence of live donor (n ¼ 39) Yes No Access to Internet (n ¼ 41) Yes No
Table 1. (continued)
Mean SD or No. (%)
Characteristic
Mean SD or No. (%)
50.07 12.87
Access to DVD player (n ¼ 41) Yes No
38 (92.7) 3 (7.3)
24 (60.0) 16 (40.0) 32 3 1 1 1 1 1
(80.0) (7.5) (2.5) (2.5) (2.5) (2.5) (2.5)
33 (82.5) 7 (17.5) 29 7 3 3 2
(50.0) (17.5) (7.5) (7.5) (5.0)
1 (2.5) 8 (20.0) 16 (40.0) 14 (35.0) 7 27 6 1
(17.1) (65.9) (14.6) (2.4)
9 11 5 4 8
(24.3) (29.7) (13.5) (10.8) (21.6)
38 (92.7) 3 (7.3) 8 (20.5) 31 (79.5)
2 13 12 10 4
(4.9) (31.7) (29.3) (24.4) (9.8)
6 (15.4) 33 (84.6) 38 (97.6) 3 (7.3)
Abbreviation: SD, standard deviation.
and the purpose and results of all of the tests. Several others requested more information on what to expect after transplantation, such as how to minimize the risk of rejection, or what to expect after the transplant in terms of quality of life, potential outcomes, drug therapy, side effects, cancer risk, or returning to work. In addition, some participants provided comments that indicated a gap in essential knowledge with the potential to impact choice regarding renal replacement options. For instance, 1 participant asked, “How often is bloodwork done after transplant? Is that forever?” Another participant stated, “I had no idea that after a transplant there was potential to turn diabetic. This I was told after I received my first kidney.” Table 3 lists specific topics that participants felt would have been more helpful to have more information about, using their own words. Correlation Between Scales
Using Pearson’s bivariate correlation, a positive association was discovered between HL and total knowledge score (r ¼ 0.52; P < .05), and numeracy score (r ¼ 0.66; P < .05). Participants with higher literacy scores also had an increased understanding of why antirejection pills are needed after transplant (r ¼ 0.38; P < .05), and they felt more confident that they would be able to take their transplant medications as prescribed (r ¼ 0.317; P < .05). Conversely, a negative association was found between HL score and BMQ-specific concern score (r ¼ 0.355; P < .05). DISCUSSION
We administered a 4-part questionnaire to 41 patients on the transplant wait-list to understand their HL, satisfaction, and beliefs of medication. The HL and numeracy scores were high, with 95% and 86% having adequate HL and numeracy, respectively. A systematic review by Fraser et al [28] on HL in patients with renal failure found the prevalence of limited HL to be 9% to 32% (median, 25%; interquartile range, 16%). The pooled prevalence of limited HL was 22.7% (95% confidence interval, 20.6e24.8), and the investigators concluded that the strong heterogeneity between the 6 included studies limit the generalizability of these results. Interestingly, this review included studies of patients undergoing hemodialysis, patients with chronic kidney disease (CKD), and transplant recipients. We believe
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JONES, ROSAASEN, TAYLOR ET AL Table 2. Health Literacy and BMQ Scores
Health literacy score (n ¼ 40)* Inadequate literacy Marginal literacy Adequate literacy Numeracy score (n ¼ 36)* Inadequate numeracy (score 0e9) Marginal numeracy (10e12) Adequate numeracy (13e17) BMQ score* BMQ-specific necessity (n ¼ 38) BMQ-specific concerns (n ¼ 38) Necessity-concerns differential (n ¼ 38) BMQ-general overuse (n ¼ 37) BMQ-general harm (n ¼ 39)
32.6 4.51 1 (2.5%) 1 (2.5%) 38 (95%) 14.36 2.43 3 (8.3%) 2 (5.6%) 31 (86.1%) 20.63 11.58 9.05 9.08 7.08
3.13 3.80 5.10 2.67 2.28
Abbreviation: BMQ, Beliefs about Medicines Questionnaire. *Mean standard deviation.
that prevalence studies of HL should address each stage in the transplant process separately. Studies indicating higher rates of poor HL have typically involved patients with CKD or those undergoing dialysis. A study by Kazley et al [29] showed that transplanted patients and patients on the wait-list had higher HL scores than patients undergoing dialysis or having vascular access. Furthermore, because HL is positively associated with becoming assessed and listed for transplant [20], it would be expected that HL would be increased in this population of patients who are already on the transplant wait-list, compared with the typical CKD or dialysis population. Our results compare most closely to a study by Gordon and Wolf [3], leading us to conclude that HL levels of patients on the kidney wait-list are most similar to transplant populations. This study of 124 kidney transplant recipients also used the S-TOFHLA to measure HL and found that 91% had adequate scores. The patient demographic characteristics were similar to our study, with a mean age of 47 12.3 years (compared with 50.07 12.9 years in the present study) and 86.3% of the participants were white (compared with 80.0% in the present study). Furthermore, in both cohorts, nearly all participants had completed high school, and 75% had an annual income of at least $25,000. Although participation bias could have resulted in inflated estimates of HL, our results were based on a response rate of nearly 40% of the target population. In addition, Griffin et al [30] studied the effect of nonresponse on HL tools and showed that adjusting for nonresponse bias by using the S-TOFHLA increased the percentage of patients characterized as having inadequate and marginal HL by only 1.3% and 4.8%, respectively. Similar to the high HL and numeracy scores noted in the present study, both knowledge and current beliefs of medication results (as measured by using the BMQ) were also positive. The BMQ scale was included as an assessment strategy in this baseline analysis because it provides an opportunity to target education accordingly. For instance, if a significant percentage of patients believed that “doctors
use too many medicines” or “natural remedies are safer than medicines,” education could be tailored around explaining the benefits and risks of their use in transplantation [26]. The positive mean scores on the BMQ necessity-concerns differential (9.05 5.10) are indicative of the strong beliefs in the importance of medication, with minimal concern for adverse effects. Negative beliefs toward medications have been shown to be an independent risk factor for poor adherence in a variety of populations, including patients with CKD and kidney transplant recipients [26,31,32]. Because adherence in the posttransplant setting is essential for graft success, the positive BMQ scores identified in this cohort of wait-listed patients is encouraging. Nevertheless, the scores of 9.08 and 7.08 on the BMQ-general overuse and harm scales, respectively, indicate that there is some perceived concern regarding medications, and this area is one in which we can target patient education.
Table 3. Specific Topics That Participants Felt Would Be Helpful to Have More Education About, in Their Own Words
Would like to be updated on new information The length of time before a transplant patient can get back to work After transplant how often is blood work done? Is that forever? I would like to know more about types of antirejection drugs and side effects. I may have learned about this at my initial assessment but that was 4 years ago. It would be good to review the info yearly I feel I have been given very little information. I would like more explanation on why tests are being done and what the results are Risk of rejection Information on the transplant wait-list: where you are and how it works More detail on what to expect after transplant in terms of drug therapy, cancer risk, and potential limitations as a result of transplant I had no idea that after a transplant there was potential to turn diabetic. This I was told after I received a kidney I would like to be more informed about time frame expected to wait for transplant Wait-list process. Donor-matching process I was left totally uniformed of the “transition” protocol from dialysis to transplant recipient More knowledge of what life might be like after the transplant, and risks and possible outcomes would have been beneficial I would like to see a progressive education process beginning at the time you are placed on the transplant list and continuing during the wait time. This could be done for short sessions each year Why are the wait-lists so long? How does the transplant list work? Education regarding donor-matching process and the current state of donation and transplant level by region A step-by-step guide from dialysis to transplant It would have been beneficial to know how certain treatments would increase the level of antibodies for a second transplant and if there would have been ways to reduce those antibodies
HEALTH LITERACY, KNOWLEDGE, AND PATIENT SATISFACTION
In the present study, correlations were noted between both HL and total knowledge score (r ¼ 0.52; P < .05), and numeracy score (r ¼ 0.66; P < .05). Participants with higher literacy scores also had an increased understanding of why antirejection pills are needed after transplant (r ¼ 0.38; P < .05) and felt more confident that they would be able to take their transplant medications as prescribed (r ¼ 0.317; P < .05). Conversely, a negative association was found between HL score and BMQ-specific concern score (r ¼ 0.355; P < .05). Disease state knowledge and HL are intricately connected. This connection is evident from the positive relationship between knowledge and HL in a variety of disease states, including heart failure, diabetes and hypertension, and CKD [8,33,34]. A study of kidney transplant recipients, however, failed to find a similar association [3]. We are encouraged by the positive performance of the K-TUT in the present study, indicated by the correlation between HL and knowledge and the Cronbach’s alpha score of 0.801. The psychometric properties of this questionnaire will be examined further in another study, which is ongoing in a cohort of transplant recipients. Perhaps the most enlightening aspect of the present study, from our perspective, was the satisfaction questionnaire. Nearly all participants felt confident that they would be able to take their transplant medications as prescribed (97.5%) and understood why they must take antirejection pills after the transplant (95%). Participants were mixed in their satisfaction regarding transplant medications, with nearly one-third unsatisfied with the previous information received (30.7%) and one-quarter (22.5%) unsatisfied with what to expect after the transplant. A significant proportion of the cohort also remained neutral in each of the 2 categories (25.6% and 22.5%, respectively). The transplant waiting period has often been identified as the most psychologically stressful time of the transplant experience [35,36]. To become active on the transplant waitlist, patients must attend multiple clinical appointments and undergo a variety of tests to ensure that there are no contraindications for transplantation. The process alone may take up to 1 year, and once the assessment is complete, the average wait time before receiving a kidney in Canada is 2.5 to 4 years, depending on the province [37]. Even in this knowledgeable cohort of patients, 8 participants requested more frequent updates while on the wait-list, which illustrates the importance of repetitive transplant education. Repetition has been shown to increase memory retention, particularly when the information is presented in spaced intervals [38]. The average score on the knowledge questionnaire was 79% and none of the participants scored 100%, indicating areas to target education. A recent systematic review on patient attitudes to wait-listing for kidney transplantation highlighted the importance of effective pretransplant education and counseling to manage patient expectations and validate and respond to patient concerns [39]. Thus, the perspectives generated from this study will be valuable to our team moving forward with the quality improvement project aimed at enhancing pretransplant education.
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Several limitations of the present study deserve discussion. The research assistant made every attempt to recruit subjects for this study, and we reached a sample size of 40%. Nevertheless, participation bias may have contributed to the high values seen during the HL assessment. Because our population consisted of a predominantly white, well-educated population, these results may not be generalizable to other populations. Although improved HL has been linked to many positive outcomes, there are numerous limitations to measuring it by using the currently available methods. The S-TOFHLA uses actual materials from the health care setting, including patient instructions, Medicaid application, and prescription vial labels. The tool has been widely used in the United States, but its use in Canada has been more limited. Questions regarding a Medicaid application, for instance, may have limited relevance in our Canadian system. Furthermore, although the TOFHLA is currently the most widely used tool for assessing HL, critics have claimed that it only offers an approximation of reading skills and does not test HL as intended [40]. Verbal communication skills, technological abilities, and learning styles also play an important role in interactions in the health care system, and they are not quantified current measures of HL [41]. Because there was no other validated means of assessing kidney transplant knowledge at this time, we had to develop our own tool. Although the internal consistency of the questionnaire seems to be good (Cronbach’s alpha, 0.801), the K-TUT has not been validated. A study on this topic is underway, and this tool may therefore be used in future research. CONCLUSIONS
HL, transplant knowledge, and BMQ scores were high in this cohort of pretransplant patients, although patient satisfaction regarding informational content remained suboptimal. The study helped to identify gaps in education surrounding the transplant process. Future educational interventions in our program will incorporate the recommendations generated from the patients in this study and will aim to improve satisfaction. ACKNOWLEDGMENTS An educational grant was provided by Astellas Pharma Canada Inc. to assist with this project. The authors thank research assistants Carrie Larson and Carrie Nagel, as well as Elisa Gordon for her training to administer the S-TOFHLA.
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2614 recipients in single center: 5 years of follow-up. Int J Nephrol Renovascular Dis 2013;6:95e9. [3] Gordon EJ, Wolf MS. Health literacy skills of kidney transplant recipients. Prog Transplant 2009;19:25e34. [4] Escobedo W, Weismuller P. Assessing health literacy in renal failure and kidney transplant patients. Prog Transplant 2013;23:47e54. [5] Chisholm MA, Fair J, Spivey CA. Health literacy and transplant patients and practitioners. Public Health 2007;121:800e3. [6] Rootman I, Gordon-El-Bihbety D. A vision of a health literate Canada: report of the expert panel on health literacy. Ottawa, Ontario, Canada: Canadian Public Health Association; 2008. [7] Health Literacy in Canada: A Healthy Understanding 2008 (Ottawa: 2008). Available at: http://www.bth.se/hal/halsoteknik.nsf/ bilagor/HealthLiteracyReportFeb2008E_pdf/$file/HealthLiteracy ReportFeb2008E.pdf. Accessed: 25 March 2016. [8] Gazmararian JA, Williams MV, Peel J, Baker DW. Health literacy and knowledge of chronic disease. Patient Educ Couns 2003;51:267e75. [9] Wolf MS, Gazmararian JA, Baker DW. Health literacy and functional health status among older adults. Arch Intern Med 2005;165:1946e52. [10] Wolf MS, Davis TC, Osborn CY, Skripkauskas S, Bennett CL, Makoul G. Literacy, self-efficacy, and HIV medication adherence. Patient Educ Counseling 2007;65:253e60. [11] Loke YK, Hinz I, Wang X, Salter C. Systematic review of consistency between adherence to cardiovascular or diabetes medication and health literacy in older adults. Ann Pharmacother 2012;46:863e72. [12] Baker DW, Parker RM, Williams MV, Clark WS. Health literacy and the risk of hospital admission. J Gen Intern Med 1998;13:791e800. [13] Eichler K, Wieser S, Brügger U. The costs of limited health literacy: a systematic review. Int J Public Health 2009;54:313e24. [14] Baker D, Wolf M, Feinglass J, Thompson J, Gazmararian J, Huang J. Health literacy and mortality among elderly persons. Arch Intern Med 2007;167:1503e9. [15] Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, et al. Quick assessment of literacy in primary care: the newest vital sign. Ann Fam Med 2005;3:514e22. [16] Jain D, Green JA. Health literacy in kidney disease: review of the literature and implications for clinical practice. World J Nephrol 2016;5:147e51. [17] Adeseun GA, Bonney CC, Rosas SE. Health literacy associated with blood pressure but not other cardiovascular disease risk factors among dialysis patients. Am J Hypertens 2012;25:348e53. [18] Green JA, Mor MK, Shields AM, Sevick MA, Arnold RM, Palevsky PM, et al. Associations of health literacy with dialysis adherence and health resource utilization in patients receiving maintenance hemodialysis. Am J Kidney Dis 2013;62:73e80. [19] Miller-Matero LR, Hyde-Nolan ME, Eshelman A, Abouljoud M. Health literacy in patients referred for transplant: do patients have the capacity to understand? Clin Transplant 2015;29: 336e42. [20] Kazley AS, Hund JJ, Simpson KN, Chavin K, Baliga P. Health literacy and kidney transplant outcomes. Prog Transplant 2015;25:85e90. [21] Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J. Development of a brief test to measure functional health literacy. Patient Educ Couns 1999;38:33e42. [22] Parker RM, Baker DW, Williams MV, Nurss JR. The test of functional health literacy in adults: a new instrument for measuring patients’ literacy skills. J Gen Intern Med 1995;10:537e41. [23] Horne R, Weinman J, Hankins M. The Beliefs about Medicines Questionnaire: the development and evaluation of a new method for assessing the cognitive representation of medication. Psychol Health 1999;14:1. [24] De las Cuevas C, Rivero-Santana A, Perestelo-Perez L, Gonzalez-Lorenzo M, Perez-Ramos J, Sanz EJ. Adaptation and
JONES, ROSAASEN, TAYLOR ET AL validation study of the Beliefs about Medicines Questionnaire in psychiatric outpatients in a community mental health setting. Hum Psychopharmacol 2011;26:140e6. [25] Chisholm MA, Williams GM, Lance CE, Mulloy LL. Predicting adherence to immunosuppressant therapy: a prospective analysis of the theory of planned behaviour. Nephrol Dial Transplant 2007;22:2339e48. [26] Hugon A, Roustit M, Lehmann A, Saint-Raymond C, Borrel E, Hilleret MN, et al. Influence of intention to adhere, beliefs and satisfaction about medicines on adherence in solid organ transplant recipients. Transplantation 2014;98:222e8. [27] Horne R, Weinman J. Patients’ beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. J Psychosom Res 1999;47:555e67. [28] Fraser SD, Roderick PJ, Casey M, Taal MW, Yuen HM, Nutbeam D. Prevalence and associations of limited health literacy in chronic kidney disease: a systematic review. Nephrol Dial Transplant 2013;28:129e37. [29] Kazley AS, Jordan J, Simpson KN, Chavin K, Rodrigue J, et al. Development and testing of a disease-specific health literacy measure in kidney transplant patients. Prog Transplant 2014;24: 263e70. [30] Griffin JM, Partin MR, Noorbaloochi S, Grill JP, Saha S, Snyder A, et al. Variation in estimates of limited health literacy by assessment instruments and non-response bias. J Gen Intern Med 2010;25:675e81. [31] Massey EK, Tielen M, Laging M, Beck DK, Khemai R, van Gelder T, et al. The role of goal cognitions, illness perceptions and treatment beliefs in self-reported adherence after kidney transplantation: a cohort study. J Psychosom Res 2013;75: 229e34. [32] Chater AM, Parham R, Riley S, Hutchison AJ, Horne R. Profiling patient attitudes to phosphate binding medication: a route to personalising treatment and adherence support. Psychol Health 2014;29:1407e20. [33] Dennison CR, McEntee ML, Samuel L, Johnson BJ, Rotman S, Kielty A, et al. Adequate health literacy is associated with higher heart failure knowledge and self-care confidence in hospitalized patients. J Cardiovasc Nurs 2011;26:359e67. [34] Wright JA, Wallston KA, Elasy TA, Ikizler TA, Cavanaugh KL. Development and results of a kidney disease knowledge survey given to patients with CKD. Am J Kidney Dis 2011;57:387e95. [35] Stukas AA, Dew MA, Switzer GE, DiMartini A, Lormos RL, Griffith BP. PTSD in heart transplantation and their primary family caregivers. Psychosomatics 1999;40:212e21. [36] Rainer JP, Thompson CH, Lambros H. Psychological and psychosocial aspects of the solid organ transplant experienceda practice review. Psychotherapy (Chic) 2010;47:403e12. [37] Canadian Organ Replacement Register. Canadian Institute for Health Information. https://secure.cihi.ca/free_products/2015_ CORR_AnnualReport_ENweb.pdf/; 2014 [accessed January 20, 2016]. [38] Kessels RP. Patients’ memory for medical information. J R Soc Med 2003;96:219e22. [39] Tong A, Hanson CS, Chapman JR, Halleck F, Budde K, Josephson MA, et al. Suspended in a paradox’-patient attitudes to wait-listing for kidney transplantation: systematic review and thematic synthesis of qualitative studies. Transpl Int 2015;28:771e87. [40] Rudd R, Epstein Anderson J, Oppenheimer S, Nath C. Health literacy: an updated review of the medical and public health literature. Annual Review of Adult Learning and Literacy. https:// cdn1.sph.harvard.edu/wp-content/uploads/sites/135/2012/09/rudd_et_ al_2007_hl_literature_review.pdf/; 2007 [accessed December 12, 2015]. [41] Dageforde LA, Cavanaugh KL. Health literacy: emerging evidence and applications in kidney disease care. Adv Chronic Kidney Dis 2013;20:311e9.
ABSTRACT Background. Poor health literacy is associated with inferior outcomes in kidney transplant recipients, and knowledge remains suboptimal in this population. The goal of this study was to characterize the health literacy, kidney transplant knowledge, medication beliefs, and education satisfaction in a cohort of patients waiting to undergo kidney transplantation. Methods. All patients on the wait-list in 1 Canadian center were invited to participate in the study. A research assistant administered the Short Test of Functional Health Literacy in Adults and its numeracy section, the Beliefs about Medicines Questionnaire, the Kidney Transplant Understanding Tool, and questions regarding satisfaction. Descriptive and univariate statistics were calculated between demographic variables and the assessments. Results. Thirty-nine percent of patients (41 of 106) patients participated in the study. Overall, 95% and 86% were defined as having adequate health literacy and numeracy, respectively. The mean score on the Kidney Transplant Understanding Tool was 79%, and the majority (97.4%) had strong beliefs regarding the necessity of medication and little concern about adverse effects (73.8%). Participants with higher literacy scores had increased knowledge (r ¼ 0.52; P ¼ .05), understanding of why antirejection pills are necessary (r ¼ 0.38; P ¼ .05), and confidence about taking posttransplant medications (r ¼ 0.32; P ¼ .05). Overall, 30.7% were unsatisfied with their education regarding medications, and 22.5% were unsatisfied with what to expect after the transplant. Conclusions. Before transplantation, health literacy, transplant knowledge, and scores on the Beliefs about Medicines Questionnaire were high in this cohort of patients. However, patient satisfaction regarding educational content remained suboptimal.
N
INETY PERCENT OF PATIENTS WITH end-stage renal disease favor transplantation as their method of treatment [1]. Indeed, kidney transplantation provides superior outcomes compared with other renal replacement therapies [2]. This is not to say that transplantation is without challenges. In addition to the inherent risk of the transplant operation, posttransplant care is complicated and typically lifelong. Thus, improving patients’ knowledge of their transplant treatments is often an important factor in achieving successful transplant outcomes. Ideally, patients should understand how to appropriately administer their transplant medications, how to monitor the health of their graft, and how to incorporate transplant-specific lifestyle 0041-1345/16 http://dx.doi.org/10.1016/j.transproceed.2016.07.018
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behavior changes. To be successful, they must be able to understand terminology and concepts relating to transplants [3]. In addition, patients must be empowered to actively participate in their own care [4] and to communicate effectively with their health care team [5]. Health literacy (HL) is the ability to access, comprehend, evaluate, and communicate information as a way to promote, maintain, and improve health in a variety of
*Address correspondence to Holly Mansell, BSP, PharmD, E3132 Health Sciences, 104 Clinic Place, Saskatoon, SK S7N 2Z4, Canada. E-mail: [email protected] ª 2016 Elsevier Inc. All rights reserved. 230 Park Avenue, New York, NY 10169
Transplantation Proceedings, 48, 2608e2614 (2016)
HEALTH LITERACY, KNOWLEDGE, AND PATIENT SATISFACTION
settings across the life course [6]. Low HL seems to be exceedingly common in Canada, affecting w60% of adults and 88% of seniors [7]. The potential consequences of low HL include limited knowledge regarding medical conditions [8], poorer health status [9] and self-management skills [10], and increased nonadherence [11], hospitalizations [12], health care costs [13], and mortality rates [14]. These findings have remained consistent when adjusting for confounding sociodemographic factors [15]. Low HL is common among patients requiring renal replacement therapy, with studies indicating that limited HL may occur in up to 50% of these patients [16]. Low HL has been associated with increased blood pressure [17], more missed dialysis sessions, and frequent emergency visits [18] in patients receiving dialysis. The actual prevalence of limited HL specifically in patients listed and waiting for a kidney transplant, however, has not been established. Miller-Matero et al [19] discovered limited reading and math ability in 27.5% and 42.8% of patients being considered for various types of solid organ transplants, respectively. This study was conducted at the beginning of the transplant process (before listing), and these results may not be generalizable to other stages of the transplant process. Patients on the kidney transplant wait-list have completed a rigorous screening process to become listed for transplantation, and limited HL has been shown to be a significant predictor of both being listed for transplant and receiving a kidney [20]. The goal of the present study therefore was to determine the HL of the wait-listed patients. We also aimed to assess kidney transplant knowledge, medication beliefs, and patient satisfaction with current educational levels of information in this population. The results of this baseline analysis will be used to guide future educational initiatives and identify opportunities for targeting education in this population. PATIENTS AND METHODS The protocol for the study was approved by the regional ethics board (protocol number BEH-14-475). All patients on the kidney transplant wait-list between April 1, 2015, and September 30, 2015, were eligible to participate in the study. Potential participants were mailed a letter describing the study; w2 weeks later, they were contacted by a research assistant to ask about participation, obtain consent, and to schedule a face-to-face appointment for patients wishing to participate in the study. The research assistant administered a 4-part questionnaire to consenting participants during a dialysis treatment or clinic visit to the Saskatchewan Transplant Program in Saskatoon or Regina. The 4-part questionnaire consisted of a knowledge questionnaire (the Kidney Transplant Understanding Tool [K-TUT]), the Education Satisfaction Assessment, the Beliefs about Medicines Questionnaire (BMQ), and the Health Literacy and Numeracy Assessment, which are further described in the following sections. A Tim Horton’s $15 coffee card was provided as incentive for participation.
HL and Numeracy Assessment HL was assessed by the trained research assistant using the Short Test of Functional Health Literacy in Adults (S-TOFHLA) [21].
2609 The S-TOFHLA, which has similar reliability and validity to the full version [22], is more practical because of the shorter completion time of 7 to 10 min [21]. We scored the S-TOFHLA as follows: scores <16 represented inadequate literacy, scores of 17 to 22 represented marginal literacy and scores 23 indicated adequate health literacy. Because renal transplant recipients must be capable of comprehending numerical directions (eg, to interpret laboratory information, adjust doses of medications), the numeracy section of the original TOFHLA [22] was also used in this study. During this section of the test, cue cards of prescription labels were supplied, and the patient was asked to respond to corresponding questions. Scores of 0 to 9, 10 to 12, and 13 to 17 represented inadequate numeracy, marginal numeracy, and adequate numeracy, respectively. The health numeracy assessments were audio-recorded and, to ensure anonymity, the numeracy and literacy results were verified by an additional research assistant who was blinded to patient identity.
Kidney Transplant Knowledge Assessment After an exhaustive search of the literature, the K-TUT was developed by the research team because no validated tool currently exists to assess knowledge of kidney transplantation. To gather evidence of face and content validity, the instrument was reviewed by w40 members of the Saskatchewan Transplant Program and Saskatoon Health Region, including 3 nephrologists, 3 surgeons, 16 nurses, and 3 pharmacists with extensive knowledge of transplantation. The measure was subsequently reviewed by 10 transplant recipients, and small modifications were made. The final version of the instrument consisted of 9 true or false questions and 14 multiple-choice questions (each with >1 potential answer, equating to a potential score of 69) regarding immunosuppressive medications and lifestyle recommendations necessary for optimal transplant outcomes. One point was given for each correct answer chosen. Because the present analysis was the first formal examination of the tool in a study, determination of adequate knowledge was not identified at this juncture.
BMQ Analysis The BMQ, as developed by Horne et al [23], is an 18-item instrument used to measure cognitive representation of medication of a patient’s own medication and beliefs about medication in general. It has been validated for use in patients with chronic illnesses and has been shown to predict adherence to treatment in certain populations, such as those with asthma, rheumatoid arthritis, severe mental disorders, and (more recently) kidney transplantation [24e26]. The first part of the questionnaire (BMQ-specific) evaluates the patient beliefs about their own medications, and the second part (BMQ-general) assesses the patient beliefs of medicines in general. The BMQ-specific has 2 themes; the first assesses perceptions of medication importance (BMQ-specific necessity), and the second theme describes the patients’ potential concern for harm and adverse effects (BMQ-specific concern). Each theme generates a score ranging from 5 to 25. Likewise, the BMQ-general consists of 2 domains, with the BMQ-general overuse scale assessing patient concern regarding overuse of mediations and the BMQ-general harm domain assessing patient beliefs about the harmful nature of medication in general. The scores in this section of the questionnaire range from 4 to 20, with a higher score indicating a more negative perception about medicines in general. A BMQ necessity-concerns differential was also calculated as the difference between the BMQ-specific necessity and BMQ-specific
2610 concerns scales [27]. This score ranges from 20 to 20, with a positive score indicating that the benefits of the medication outweigh the cost, and a negative score indicating that the patient perceives the cost to be greater than the benefit.
Education Satisfaction Survey The goal of the Education Satisfaction Survey, which was created by the research team, was to identify perceived gaps in site-specific education, identify patient access to technology, determine the best way to disseminate transplant information, and provide pretransplant patients with the ability to provide input regarding education. This survey comprised 4 questions rating perceived satisfaction with the current education on a Likert scale of 1 to 5 (completely disagree to completely agree) and 2 open-ended questions allowing the potential recipient to provide additional feedback regarding educational needs. The qualitative feedback from these questions was reviewed and categorized to identify common themes.
Statistical Analysis Data analysis was conducted by using SPSS version 23 (IBM SPSS Statistics, IBM Corporation, Armonk, NY, United States). Results were described as percentages and mean standard deviation. Because patients were encouraged to answer only the questions they were comfortable with, demographic queries, HL, numeracy, and BMQ scores produced a variety of denominators. Missing data for the KKTQ were handled differently because the questionnaire consisted of 23 questions, with a total of 69 items, and missing a single question would have resulted in the exclusion of that patient. Hence, mean imputation was used for this portion of the questionnaire. Group differences between demographic variables and the assessment scores were calculated by using the Student t test or 1-way analysis of variance (for >2 groups). The researchers had originally planned to analyze HL and numeracy data categorically (adequate, marginal, or inadequate). However, because a high proportion of participants displayed adequate HL and numeracy, the choice was made to treat these measures as a continuous variable instead. Relationships between the scales of HL, numeracy literacy, knowledge, and BMQ scores were examined by using the Pearson correlation. Cronbach’s alpha was calculated to determine the internal consistency of the knowledge questionnaire.
RESULTS
Of 113 individuals on the kidney transplant wait-list during the study time period, 7 were deemed ineligible to participate because they were transplanted (n ¼ 5), dead (n ¼ 1), or delisted (n ¼ 1). Of the remaining patients on the kidney transplant wait-list during the 6-month period, 41 participated in the survey, providing a response rate of 38.9%. Table 1 presents patient demographic characteristics. HL and Numeracy
HL scores as measured by using the S-TOFHLA were high in this cohort, with 95% of the group having adequate HL. The mean HL score was 32.6 4.5. Eighty-six percent of the cohort had adequate numeracy (as measured by using the TOFHLA), with a mean numeracy score of 14.4 2.4 (Table 2).
JONES, ROSAASEN, TAYLOR ET AL
Kidney Transplant Knowledge
The mean score on the K-TUT was 54.9 6.4 (of 60), which converted to a score of 79%. Cronbach’s alpha of the measurement items was 0.801, which indicates good internal consistency of the questionnaire. The majority of the questions were answered by all 41 respondents; all questions with the exception of 1 achieved a response rate of at least 90%. Question 6 (“True or false: your transplant kidney is also called a graft”), however, achieved a response rate of 87.8%. Beliefs of Medicines
The mean score on the BMQ-specific necessity scale was 20.6 3.13, and nearly all participants (97.4%) had strong beliefs in the necessity of their medication for maintaining health (as defined by scores greater than the scale midpoint). The majority of the sample (73.8%) did not have strong concerns about the potential adverse effects of using their medications (scores lower than the scale midpoint) and perceived the necessity to outweigh the concerns (positive values for the necessity-concern differential.) The majority of the participants did not have strong concerns about the overuse of medications (86.5%) or potential for harm of medications in general (100%) (scores lower than the scale midpoint) (Table 2). Satisfaction Level
In general, participant responses were mixed regarding their levels of satisfaction. Forty-three percent were satisfied with the information they had received regarding transplant medications (agree or agree completely), 30.7% were unsatisfied (disagree or disagree completely), and nearly one-quarter (25.6%) remained neutral. One-half of the participants (55%) were happy (agree or agree completely) with their education regarding transplant expectations such as clinic appointments, bloodwork, and lifestyle modifications; 22.5% percent stated that they were unsatisfied (disagree or disagree completely); and 22.5% remained neutral. Almost all participants felt confident (agree or agree completely) that they would be able to take their transplant medications as prescribed (97.5%) and understood why they must take antirejection pills after the transplant (95%). Patients were given the opportunity to identify information that was potentially missing during their pretransplant education and to comment on their education in general. Eight patients requested more regular updates on information. As 1 patient explained “It might be good to provide the patient information about transplant every 3e5 years or so. When I was put on the list 8 years ago I was told about the process but since then I can’t remember being explained about it at all.” Seven participants commented that more information regarding the wait-list process would be beneficial, including an explanation about the process for waitlist placement and donor matching, expected wait times, more information on the transition process from dialysis,
HEALTH LITERACY, KNOWLEDGE, AND PATIENT SATISFACTION
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Table 1. Patient Demographic Characteristics Characteristic
Age, y Sex (n ¼ 40) Male Female Race (n ¼ 40) White Filipino Aboriginal South Asian Black Latin American Other English as a first language (n ¼ 40) Yes No Occupation (n ¼ 41) Working Retired Temporarily cannot work Disability income Unemployed Education (n ¼ 40) Middle school High school Some other continuing education after high school University Marital status (n ¼ 41) Single, never married Married/cohabitating Separated/divorced Widowed/widower Yearly income (n ¼ 37), $ 10,000e24,000 25,000e49,999 50,000e74,999 75,000e99,999 >100,000 Support person (n ¼ 41) Yes No Residence (n ¼ 39) Rural community Urban community Length of time waiting for transplant (n ¼ 41), y <1 >1e3 >3e5 >5e10 >10 Presence of live donor (n ¼ 39) Yes No Access to Internet (n ¼ 41) Yes No
Table 1. (continued)
Mean SD or No. (%)
Characteristic
Mean SD or No. (%)
50.07 12.87
Access to DVD player (n ¼ 41) Yes No
38 (92.7) 3 (7.3)
24 (60.0) 16 (40.0) 32 3 1 1 1 1 1
(80.0) (7.5) (2.5) (2.5) (2.5) (2.5) (2.5)
33 (82.5) 7 (17.5) 29 7 3 3 2
(50.0) (17.5) (7.5) (7.5) (5.0)
1 (2.5) 8 (20.0) 16 (40.0) 14 (35.0) 7 27 6 1
(17.1) (65.9) (14.6) (2.4)
9 11 5 4 8
(24.3) (29.7) (13.5) (10.8) (21.6)
38 (92.7) 3 (7.3) 8 (20.5) 31 (79.5)
2 13 12 10 4
(4.9) (31.7) (29.3) (24.4) (9.8)
6 (15.4) 33 (84.6) 38 (97.6) 3 (7.3)
Abbreviation: SD, standard deviation.
and the purpose and results of all of the tests. Several others requested more information on what to expect after transplantation, such as how to minimize the risk of rejection, or what to expect after the transplant in terms of quality of life, potential outcomes, drug therapy, side effects, cancer risk, or returning to work. In addition, some participants provided comments that indicated a gap in essential knowledge with the potential to impact choice regarding renal replacement options. For instance, 1 participant asked, “How often is bloodwork done after transplant? Is that forever?” Another participant stated, “I had no idea that after a transplant there was potential to turn diabetic. This I was told after I received my first kidney.” Table 3 lists specific topics that participants felt would have been more helpful to have more information about, using their own words. Correlation Between Scales
Using Pearson’s bivariate correlation, a positive association was discovered between HL and total knowledge score (r ¼ 0.52; P < .05), and numeracy score (r ¼ 0.66; P < .05). Participants with higher literacy scores also had an increased understanding of why antirejection pills are needed after transplant (r ¼ 0.38; P < .05), and they felt more confident that they would be able to take their transplant medications as prescribed (r ¼ 0.317; P < .05). Conversely, a negative association was found between HL score and BMQ-specific concern score (r ¼ 0.355; P < .05). DISCUSSION
We administered a 4-part questionnaire to 41 patients on the transplant wait-list to understand their HL, satisfaction, and beliefs of medication. The HL and numeracy scores were high, with 95% and 86% having adequate HL and numeracy, respectively. A systematic review by Fraser et al [28] on HL in patients with renal failure found the prevalence of limited HL to be 9% to 32% (median, 25%; interquartile range, 16%). The pooled prevalence of limited HL was 22.7% (95% confidence interval, 20.6e24.8), and the investigators concluded that the strong heterogeneity between the 6 included studies limit the generalizability of these results. Interestingly, this review included studies of patients undergoing hemodialysis, patients with chronic kidney disease (CKD), and transplant recipients. We believe
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JONES, ROSAASEN, TAYLOR ET AL Table 2. Health Literacy and BMQ Scores
Health literacy score (n ¼ 40)* Inadequate literacy Marginal literacy Adequate literacy Numeracy score (n ¼ 36)* Inadequate numeracy (score 0e9) Marginal numeracy (10e12) Adequate numeracy (13e17) BMQ score* BMQ-specific necessity (n ¼ 38) BMQ-specific concerns (n ¼ 38) Necessity-concerns differential (n ¼ 38) BMQ-general overuse (n ¼ 37) BMQ-general harm (n ¼ 39)
32.6 4.51 1 (2.5%) 1 (2.5%) 38 (95%) 14.36 2.43 3 (8.3%) 2 (5.6%) 31 (86.1%) 20.63 11.58 9.05 9.08 7.08
3.13 3.80 5.10 2.67 2.28
Abbreviation: BMQ, Beliefs about Medicines Questionnaire. *Mean standard deviation.
that prevalence studies of HL should address each stage in the transplant process separately. Studies indicating higher rates of poor HL have typically involved patients with CKD or those undergoing dialysis. A study by Kazley et al [29] showed that transplanted patients and patients on the wait-list had higher HL scores than patients undergoing dialysis or having vascular access. Furthermore, because HL is positively associated with becoming assessed and listed for transplant [20], it would be expected that HL would be increased in this population of patients who are already on the transplant wait-list, compared with the typical CKD or dialysis population. Our results compare most closely to a study by Gordon and Wolf [3], leading us to conclude that HL levels of patients on the kidney wait-list are most similar to transplant populations. This study of 124 kidney transplant recipients also used the S-TOFHLA to measure HL and found that 91% had adequate scores. The patient demographic characteristics were similar to our study, with a mean age of 47 12.3 years (compared with 50.07 12.9 years in the present study) and 86.3% of the participants were white (compared with 80.0% in the present study). Furthermore, in both cohorts, nearly all participants had completed high school, and 75% had an annual income of at least $25,000. Although participation bias could have resulted in inflated estimates of HL, our results were based on a response rate of nearly 40% of the target population. In addition, Griffin et al [30] studied the effect of nonresponse on HL tools and showed that adjusting for nonresponse bias by using the S-TOFHLA increased the percentage of patients characterized as having inadequate and marginal HL by only 1.3% and 4.8%, respectively. Similar to the high HL and numeracy scores noted in the present study, both knowledge and current beliefs of medication results (as measured by using the BMQ) were also positive. The BMQ scale was included as an assessment strategy in this baseline analysis because it provides an opportunity to target education accordingly. For instance, if a significant percentage of patients believed that “doctors
use too many medicines” or “natural remedies are safer than medicines,” education could be tailored around explaining the benefits and risks of their use in transplantation [26]. The positive mean scores on the BMQ necessity-concerns differential (9.05 5.10) are indicative of the strong beliefs in the importance of medication, with minimal concern for adverse effects. Negative beliefs toward medications have been shown to be an independent risk factor for poor adherence in a variety of populations, including patients with CKD and kidney transplant recipients [26,31,32]. Because adherence in the posttransplant setting is essential for graft success, the positive BMQ scores identified in this cohort of wait-listed patients is encouraging. Nevertheless, the scores of 9.08 and 7.08 on the BMQ-general overuse and harm scales, respectively, indicate that there is some perceived concern regarding medications, and this area is one in which we can target patient education.
Table 3. Specific Topics That Participants Felt Would Be Helpful to Have More Education About, in Their Own Words
Would like to be updated on new information The length of time before a transplant patient can get back to work After transplant how often is blood work done? Is that forever? I would like to know more about types of antirejection drugs and side effects. I may have learned about this at my initial assessment but that was 4 years ago. It would be good to review the info yearly I feel I have been given very little information. I would like more explanation on why tests are being done and what the results are Risk of rejection Information on the transplant wait-list: where you are and how it works More detail on what to expect after transplant in terms of drug therapy, cancer risk, and potential limitations as a result of transplant I had no idea that after a transplant there was potential to turn diabetic. This I was told after I received a kidney I would like to be more informed about time frame expected to wait for transplant Wait-list process. Donor-matching process I was left totally uniformed of the “transition” protocol from dialysis to transplant recipient More knowledge of what life might be like after the transplant, and risks and possible outcomes would have been beneficial I would like to see a progressive education process beginning at the time you are placed on the transplant list and continuing during the wait time. This could be done for short sessions each year Why are the wait-lists so long? How does the transplant list work? Education regarding donor-matching process and the current state of donation and transplant level by region A step-by-step guide from dialysis to transplant It would have been beneficial to know how certain treatments would increase the level of antibodies for a second transplant and if there would have been ways to reduce those antibodies
HEALTH LITERACY, KNOWLEDGE, AND PATIENT SATISFACTION
In the present study, correlations were noted between both HL and total knowledge score (r ¼ 0.52; P < .05), and numeracy score (r ¼ 0.66; P < .05). Participants with higher literacy scores also had an increased understanding of why antirejection pills are needed after transplant (r ¼ 0.38; P < .05) and felt more confident that they would be able to take their transplant medications as prescribed (r ¼ 0.317; P < .05). Conversely, a negative association was found between HL score and BMQ-specific concern score (r ¼ 0.355; P < .05). Disease state knowledge and HL are intricately connected. This connection is evident from the positive relationship between knowledge and HL in a variety of disease states, including heart failure, diabetes and hypertension, and CKD [8,33,34]. A study of kidney transplant recipients, however, failed to find a similar association [3]. We are encouraged by the positive performance of the K-TUT in the present study, indicated by the correlation between HL and knowledge and the Cronbach’s alpha score of 0.801. The psychometric properties of this questionnaire will be examined further in another study, which is ongoing in a cohort of transplant recipients. Perhaps the most enlightening aspect of the present study, from our perspective, was the satisfaction questionnaire. Nearly all participants felt confident that they would be able to take their transplant medications as prescribed (97.5%) and understood why they must take antirejection pills after the transplant (95%). Participants were mixed in their satisfaction regarding transplant medications, with nearly one-third unsatisfied with the previous information received (30.7%) and one-quarter (22.5%) unsatisfied with what to expect after the transplant. A significant proportion of the cohort also remained neutral in each of the 2 categories (25.6% and 22.5%, respectively). The transplant waiting period has often been identified as the most psychologically stressful time of the transplant experience [35,36]. To become active on the transplant waitlist, patients must attend multiple clinical appointments and undergo a variety of tests to ensure that there are no contraindications for transplantation. The process alone may take up to 1 year, and once the assessment is complete, the average wait time before receiving a kidney in Canada is 2.5 to 4 years, depending on the province [37]. Even in this knowledgeable cohort of patients, 8 participants requested more frequent updates while on the wait-list, which illustrates the importance of repetitive transplant education. Repetition has been shown to increase memory retention, particularly when the information is presented in spaced intervals [38]. The average score on the knowledge questionnaire was 79% and none of the participants scored 100%, indicating areas to target education. A recent systematic review on patient attitudes to wait-listing for kidney transplantation highlighted the importance of effective pretransplant education and counseling to manage patient expectations and validate and respond to patient concerns [39]. Thus, the perspectives generated from this study will be valuable to our team moving forward with the quality improvement project aimed at enhancing pretransplant education.
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Several limitations of the present study deserve discussion. The research assistant made every attempt to recruit subjects for this study, and we reached a sample size of 40%. Nevertheless, participation bias may have contributed to the high values seen during the HL assessment. Because our population consisted of a predominantly white, well-educated population, these results may not be generalizable to other populations. Although improved HL has been linked to many positive outcomes, there are numerous limitations to measuring it by using the currently available methods. The S-TOFHLA uses actual materials from the health care setting, including patient instructions, Medicaid application, and prescription vial labels. The tool has been widely used in the United States, but its use in Canada has been more limited. Questions regarding a Medicaid application, for instance, may have limited relevance in our Canadian system. Furthermore, although the TOFHLA is currently the most widely used tool for assessing HL, critics have claimed that it only offers an approximation of reading skills and does not test HL as intended [40]. Verbal communication skills, technological abilities, and learning styles also play an important role in interactions in the health care system, and they are not quantified current measures of HL [41]. Because there was no other validated means of assessing kidney transplant knowledge at this time, we had to develop our own tool. Although the internal consistency of the questionnaire seems to be good (Cronbach’s alpha, 0.801), the K-TUT has not been validated. A study on this topic is underway, and this tool may therefore be used in future research. CONCLUSIONS
HL, transplant knowledge, and BMQ scores were high in this cohort of pretransplant patients, although patient satisfaction regarding informational content remained suboptimal. The study helped to identify gaps in education surrounding the transplant process. Future educational interventions in our program will incorporate the recommendations generated from the patients in this study and will aim to improve satisfaction. ACKNOWLEDGMENTS An educational grant was provided by Astellas Pharma Canada Inc. to assist with this project. The authors thank research assistants Carrie Larson and Carrie Nagel, as well as Elisa Gordon for her training to administer the S-TOFHLA.
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