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The Relationship Between Functional Health Literacy and Adherence to Emergency Department Discharge Instructions Among Spanish-Speaking Patients Patrick Carlsen Smith, MD, MPH; Jane H. Brice, MD, MPH; James Lee, MD, MPH
Funding/Support: Dr Smith was supported by a medical student research grant (DK007386-26), funded by the National Institutes of Health, from the University of North Carolina at Chapel Hill School of Medicine. Introduction: Adherence to emergency department (ED) discharge instructions among immigrant Spanish-speaking populations in the United States is suboptimal. Our objectives were to: (1) investigate associations between functional health literacy (FHL) and ED discharge instruction adherence in Spanish-speaking populations, and (2) compare the ED adherence rates of Spanish speakersto English speakers. Methods: Using a matched cohort design, the FHL of adult native Spanish speakers in a tertiary care ED was assessed using the Test of Functional Health Literacy of Adults in Spanish (TOHFLA-S). Gender-matched and age-matched native English speakers were assessed using TOHFLA. TOFHLA scores range from 1 to 100 with adequate FHL cutoff at 74. Excluded patients were those aged less than 19 years, unwilling, prisoners, institutionalized, extremely ill, with a psychiatric complaint, in receipt of nonspecific instructions for follow-up, or with poor vision. A second interview assessed adherence with follow-up appointments and filling prescriptions. Results: Fifty matched pairs were enrolled. Spanish speakers were less likely to understand discharge instructions (Spanish speakers, 78%; English speakers, 94%; p < .0001) or to keep follow-up appointments (Spanish speakers, 46%; English speakers, 83%; p < .0001). TOFHLA for Spanish speakers averaged 62 vs 93 for English speakers (p < .0001). FHL was associated with understanding of and adherence to discharge instructions for Spanish speakers. Further, Spanish speakers reported lack of understanding as a primary reason for nonadherence. Conclusion: Spanish-speaking patients were less likely to comply with discharge instructions and scored lower on a test of FHL than English-speaking patients. Poor adherence to ED discharge instructions was associated with lower FHL scores for our Spanish-speaking population. Alternative methods of providing discharge instructions to this population of patients should be explored.
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Keywords: health disparities n compliance n adherence n emergency department J Natl Med Assoc. 2012;104:521-527 Author Affiliations: Swedish Family Medicine Residency, Littleton, Colorado (Dr Smith); University of North Carolina at Chapel Hill (Dr Brice); Santa Clara Medical Center, California (Dr Lee). Correspondence: Jane H. Brice MD, MPH, Associate Professor, Department of Emergency Medicine, CB# 7594, University of North Carolina, Chapel Hill, NC 27599-7594 (
[email protected]).
Introduction
I
n recent years, the United States has experienced one of the largest influxes of immigrants in its history.1 Most notably, people of Hispanic origin are immigrating both legally and illegally in record numbers and now comprise the largest minority group in the nation.2 Southern states especially have seen explosive growth in the numbers of Hispanics, with North Carolina leading the country with the largest growth rate in the Hispanic population.3 This growth has caused a strain on health care services, as Hispanics predominantly utilize pediatric, obstetrics and, in particular, emergency department (ED) services in hospitals.4-9
Importance In many areas, Hispanics have worse health outcomes than other populations.3,10 One reason for poor health outcomes is poor adherence with physician instructions. Adherence describes the extent to which a patient follows an agreed-upon plan of treatment with limited supervision by a health care professional.11,12 Numerous studies have shown poor adherence leads to worse health outcomes.13,14 Adherence to discharge instructions is especially important in the ED setting and is a key component to patient care.15,16 Medications and follow-up care aid in diagnosis of acute and chronic conditions, complete therapy, and prevent return to the ED.17,18 On the other hand, nonadherence to physician instructions has detrimental effects on the quality of medical care and leads to worse health.19-21 Hispanics are VOL. 104, NOS. 11 & 12, NOVEMBER/DECEMBER 2012 521
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more likely to be less adherent to physician instructions than non-Hispanic white patients and therefore run the risk of adverse outcomes.22 Hispanics face many barriers to effective utilization of the health care system.23 They are less likely to have health insurance and have more communication barriers, fewer financial resources, and less understanding of the US health care system.10,24,25 One proposed reason for poor adherence to ED discharge instructions is that the patients fail to understand the instructions (ie, what did the doctor order?).23,26 Functional health literacy (FHL) is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.27 Spanish speakers have been shown to have lower FHL than English speakers, even when Spanish interpreters are used.28-30 Several studies have suggested that lower health literacy contributes to poor health outcomes.27,29
Goals of This Investigation We sought to evaluate the association of FHL with adherence to ED discharge instructions. To determine associations between FHL and adherence, we first sought to determine whether Spanish speakers who presented to the ED had lower rates of adherence to ED discharge instructions when compared with English-speaking patients. Then, if a difference was detected, we sought to investigate whether patient FHL was associated with attending followup appointments and filling prescriptions.
Methods Study Design Utilizing a prospective cohort design, Spanishspeaking subjects were matched on age and gender to English-speaking patients to determine differences in FHL and rates of adherence to ED discharge instructions. This study was approved by the institutional review board for human research ethics at the University of North Carolina at Chapel Hill.
Setting We conducted the study in the emergency department of the University of North Carolina (UNC) Hospitals in Chapel Hill. UNC Hospitals is a suburban, public, tertiary care academic medical center that serves the greater Raleigh-Durham-Chapel Hill metropolitan area and is also a regional referral center for patients throughout North Carolina and the surrounding states. The hospital has a full complement of specialists, services, and clinics, and employs a trained staff of bilingual Spanish-English interpreters available in-house, 24 hours per day for Spanish-speaking patients. The ED serves approximately 65 000 patients annually. The local Spanish-speaking population consists largely of immigrants newly arrived to the United States.31-34 522 JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
Selection of Participants Participants were recruited between May and September 2006 in the UNC emergency department. A cohort consisting of 50 Spanish-speaking patients was matched with a like number of English-speaking patients, for a total of 100 patients. We identified potential participants as they entered the ED and were triaged by the nursing staff. Once a potential patient was identified, a bilingual investigator entered the ED room, explained the purpose of the study in the patient’s primary language, and obtained written consent. Eligibility criteria included patients who were aged greater than 18 years, fluently spoke either Spanish or English but not both, were discharged to home after being seen by a physician, and received written and verbal instructions in their primary language. The instructions included directions to come to a follow-up appointment and/or fill a prescription for medication within 1 week. We excluded patients with the following characteristics: having psychiatric complaints, being a prisoner, being institutionalized, having received instructions to follow up only if problems develop, being too ill to participate, and having visual acuity less than 20/100. Visual acuity testing was required for our literacy instrument. We matched an English-Speaking patient with the same gender and age within 5 years for each Spanish-speaking patient. Because we expected large differences in education, we did not attempt to match subjects on this demographic variable. Due to the lower frequency of Spanish speakers presenting to the ED, the bilingual investigator enrolled Spanish speakers first and then searched for a matching English speaker.
Methods of Measurement Research assistant selection and training. One bilingual research assistant enrolled subjects, administered the study tool, conducted the follow-up telephone interviews, and collected data. The research assistant was fluent in both Spanish and English and had been assessed with a Spanish level of high advanced (level right below native speaker) by the Peace Corps language testing service. Study instrument. Our study required the use of an instrument to assess the FHL of each subject. The Test of Functional Health Literacy in Adults (TOFHLA) is a validated survey tool that uses medical documents such as prescription medicine bottle labels, consent forms, and written medical instructions to evaluate an individual’s reading comprehension and numerical aptitude. These are 2 components considered necessary to accurately follow documentation that is commonly encountered when seeking medical care, including prescription container labels and discharge instructions. Parker et al validated the TOFHLA as a reliable instrument to measure FHL. TOFHLA is available and validated in both English and Spanish35 and takes approximately 30 VOL. 104, NOS. 11 & 12, NOVEMBER/DECEMBER 2012
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minutes to complete. It is scored on a scale from 0 to 100, with scores of 75 to 100 judged as adequate FHL, 60 to 74 as marginally adequate FHL, and less than 60 as poor FHL.
Data Collection and Processing Patients were assessed for enrollment in the order they presented to the ED triage area. Baseline information, including age, gender, race, and language status was taken from the patient’s chart. After written consent was obtained for both the ED and future telephone interviews, further information regarding the highest level of school completed, self-reported reading ability, and socioeconomic surrogate markers (car ownership, telephone ownership, type of housing, and financial assistance for food) was assessed in a simple verbally administered survey. The demographic survey was investigator-developed. After the survey was completed, the bilingual research assistant administered the TOFHLA-S to Spanish-speaking patients and the TOFHLA to English-speaking patients. Every effort
was made to enroll the matching English-speaking patient as soon as possible following enrollment of the Spanish-speaking patient. The research assistant phoned patients within 12 days following ED discharge dates, using information provided by the patients. The phone interview consisted of a series of questions designed to determine whether the patient went to a follow-up appointment and/or obtained prescription medication, and, if not, the reasons for not having done so. To avoid any measurement bias, the research assistant did not grade the TOFHLA until after the telephone interview. Data were collected in paper format and entered into Excel (Microsoft Corp, Redmond, Washington).
Outcome Measures The primary outcome measure was the rate of adherence to ED discharge instructions. We compared the proportion of those who attended their follow-up appointment or who filled their prescription as directed upon discharge from the ED. The secondary outcome measure was the TOFHLA score.
Table 1. Demographic Information Taken in Emergency Department Interview Variable No. of Patients (N) Average age, y Health insurance status Private insurance Worker’s compensation Medicare/Medicaid None Emergency department location Minor trauma Acute care Grade level completed Self-reported reading level (0-4 scale) Overall self-reported health status Good Fair Poor Average No. of people in patient household Income level $0-$10 000 $10 001-$20 000 $20 001-$30 000 $30 001-$40 000 ≥$40 000 No. of patients who own a car No. of patients who own their own telephone No. of patients who receive food stamps Type of residence Apartment House Mobile home Shelter Average Test of Functional Health Literacy in Adults score Males Females Total
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English Speakers
Spanish Speakers
50 33
50 33
26 (52%) 2 (4%) 7 (14%) 15 (30%)
10 11 1 28
41 (82%) 9 (18%) 13.6 3.76
21 (42%) 29 (58%) 7.8 3.02
34 (68%) 12 (24%) 4 (8%) 3.02
25 (50%) 19 (38%) 6 (12%) 3.60
11 (22%) 11 (22%) 6 (12%) 7 (14%) 15 (30%) 42 (84%) 50 (100%) 6 (12%)
16 (32%) 22 (44%) 8 (16%) 3 (6%) 1 (2%) 35 (70%) 46 (92%) 9 (18%)
10 (20%) 31 (62%) 8 (16%) 1 (2%)
20 16 14 0
91.56 94.32 92.98
(20%) (22%) (2%) (56%)
(40%) (32%) (28%) (0%)
67.88 56.48 62.18
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Primary Data Analysis Associations between adherence to ED discharge instructions and FHL were measured utilizing c2 comparisons. An a priori sample size calculation guided our determination of group size. Using an a of .05, a total of 85 subjects allowed us to have 80% power to detect a 25% difference in adherence rates.
Results Characteristics of Study Subjects A total of 65 Spanish-speaking patients were approached and 50 completed the study. Five patients refused to participate. Ten other Spanish-speaking patients were enrolled but failed to complete the study. One patient had been admitted to the hospital directly from the ED, 1 was eliminated because no discharge instructions had been given to the patient, and 8 had disconnected or incorrect telephone numbers. A total of 78 English-speaking patients were approached, 18 refused to participate, 10 were eliminated when their Spanish match was eliminated, and 50 completed the telephone interview. As expected, demographic differences existed between the Spanish-speaking and English-speaking patients. English speakers had a higher education level, with the average person having attended at least some college education, while Spanish speakers had education, on average, at the seventh-grade level. English speakers reported better reading ability, had a higher income, were more likely to have medical insurance coverage, and were more likely to own a car and live in their own house. More Englishspeaking patients came from the minor trauma section of the ED (lower acuity), while more Spanish-speaking patients were found in acute care (higher acuity). Table 1 summarizes the demographic data.
Main Results English speakers had significantly higher FHL than Spanish speakers, with average TOFHLA scores of 92.98 and 62.18, respectively (p < .001). Spanishspeaking patients with inadequate FHL attended
follow-up appointments less frequently than patients with marginal or adequate FHL (36% vs 40% vs 59%, p < .001). Further, patients with low FHL also reported less understanding of ED instructions than those with higher FHL (60% vs 82% vs 95% understood instructions, p < .001). Scores on the TOFHLA are not associated with filling of prescriptions (Table 2). Of the Spanish-speaking patients who were instructed to attend a follow-up appointment with a physician, 46% (19/41) did so, while 83% (38/46) of English speakers visited a doctor as instructed (p < .001). Spanishspeaking patients were not significantly different from English speakers in filling the prescriptions given to them in the ED, with 85% (35/41) having filled the prescription, while 87% (34/39) of English speakers filled their prescription (p = .815). Further, 78% (39/50) of Spanish speakers stated they understood their discharge instructions, while 94% (47/50) of English speakers expressed understanding (p = .020). Whereas English speakers cited improved condition as their primary reason for not attending a follow-up appointment, Spanish speakers cited expense, lack of time, and lack of understanding about the appointment for reasons of nonadherence. Further, regarding reasons for not filling prescriptions, English speakers stated they feared side effects or that the medicines were not needed, while Spanish speakers cited cost and a lack of understanding about the medications. Table 3 further details adherence.
Discussion
For our immigrant Spanish-speaking patients, FHL was directly associated with the rate of adherence with attending follow-up appointments and with understanding of ED discharge instructions, but not with the rate at which prescriptions were filled. Spanish-speaking patients who scored high on the TOFHLA-S had higher rates (95%) of self-reported understanding of their discharge instructions than those with either marginal (82%) or low (60%) FHL. Further, the Spanish-speaking patients with high FHL also had significantly higher rates of attending follow-up appointments, with 59% vs 40%
Table 2. Understanding and Adherence of Discharge Instructions Based on Functional Health Literacy Score in the Spanish-Speaking Population Functional Health Literacy Primary Language Status Spanish
English
Low Medium High Total Low Medium High Total
No.
Understood Discharge Instructions
Filled Prescription as instructed
Followed Up With a Physician as Instructed
20 11 19 50 1 0 49 50
60% 82% 95% 78% 100% N/A 94% 94%
88% 78% 88% 85% 100% N/A 88% 88%
36% 40% 59% 46% 100% N/A 83% 83%
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of marginal FHL patients and only 36% of low-FHL patients going to their follow-up appointments. Finally, when asked why they did not fill their prescription and/or attend their follow-up appointment, Spanish-speaking patients cited cost and a variety of reasons related to poor understanding as the primary reasons for nonadherence, although the numbers were low, making it difficult to make conclusions regarding the lack of adherence. Our data comparing the FHL of English speakers and Spanish speakers were consistent with the literature. We found that 62% of Spanish speakers were in the low to marginal FHL level, while only 2% of English speakers had low FHL. The National Assessment of Adult Literacy found in 2003 that 41% of Hispanic adults had below basic health literacy and another 25% had marginal health literacy.28 In a previous study at UNC, 74% of Spanish speakers had inadequate or marginal FHL, while only 7% of English speakers were the same.26 A 1999 study found 53.9% of Spanish speakers had inadequate or marginal FHL, compared with 33.9% for English-speaking respondents.36 Our study adds to the literature showing a startling difference in FHL between English-speaking and Spanish-speaking subjects. To our knowledge, this is the first study to specifically compare Spanish-speaking patients’ level of health literacy in the emergency department and their adherence with discharge instructions. Few tests of literacy have been developed for use with the Spanish-speaking population, and even those that are used have only recently been validated (including the TOFHLA-S).35,37,38
US Census data have shown that the Spanish-speaking population has less education than the rest of society.39 Our study measured that, on average, the Spanishspeaking population had completed seventh grade.37,39,40 However, numerous studies have consistently shown that health care materials and information are presented at the 10th grade level or above, far beyond the capabilities of many adults.41 Our study confirmed previous research that Spanishspeaking patients adhere to discharge instructions at rates less frequently than native English–speaking patients.22 We could not, however, determine why this difference exists, as our 2 cohorts differed in several confounding ways, including native language, income, insurance status, educational level, and FHL levels. The fact that a high percentage of Spanish speakers are nonadherent with emergency department discharge instructions indicates a need to address the issues that are causing nonadherence. Many of the subjects in our study reported a lack of understanding of the information being reported to them. One obvious response would be to provide more training to health care providers in patient education. However, in the emergency department, physician-patient time is often limited and nonconducive to extensive teaching. Simple evaluation tools of patient literacy are needed.40 Further, a dedicated “patient education specialist” or social worker could be utilized to evaluate literacy status of all Spanishspeaking patients, assist in appointment scheduling and prescription filling, address patient concerns, and tailor
Table 3. Information Taken in Follow-up Telephone Interview English Speakers (N = 50) Status of presenting symptoms Better Same Worse Stated understanding of discharge instructions Received prescription for medication in discharge instructions Percentage who filled prescription as directed Reasons given for not filling prescription Too expensive Forgot Lost prescription Medicine not needed Fear of side effects Did not understand why medication needed No. who were told to follow up with a doctor Percentage who attended a follow-up appointment Reasons given for not attending follow-up appointment Too expensive Did not know whom to call No transportation Improved condition Lack of time Problems making appointment Other
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34 14 2 47 39 87%
(68%) (28%) (4%) (94%) (78%) (34/39)
Spanish Speakers (N = 50) 36 12 2 39 41 85%
(72%) (24%) (4%) (78%) (82%) (35/41)
0 1 0 2 2 0 46 83% (38/46)
2 0 0 0 0 4 41 46% (19/41)
2 0 0 4 2 0 0
5 1 2 4 5 2 3
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instructions reflecting the specific needs of the individual patient. Less-expensive options include training current staff on better education techniques, using jargonfree instructions directed at the patient’s health literacy level, providing pictures, making appointments for the patient, and utilizing techniques such as “teach back” to ensure understanding by the patient.42,43
photographs, video, and Internet resources. In addition, multilingual physicians and improved training in effectively utilizing interpreters could help overcome language barriers. Lastly, if financially feasible, an ED can employ a patient education specialist who can assist low-literacy patients in understanding health care instructions.
Limitations
1. Coming to America: A Profile of the Nation’s Foreign Born. Washington, DC: US Census Bureau; 2000. US Census Bureau publication CENBR/00-2. 2. Guzman B. The Hispanic Population. Census 2000 Brief. Washington, DC: US Census Bureau; 2001. US Census Bureau publication C2KBR/01-3. 3. Buescher PA. A review of available data on the health of the Latino population in North Carolina. NC Med J. 2003;64:97-105. 4. Berdahl TA, Kirby JB, Stone RA. Access to health care for nonmetro and metro Latinos of Mexican origin in the United States. Med Care. 2007;45:647-654. 5. Flores G, Bauchner H, Feinstein AR, Nguyen US. The impact of ethnicity, family income, and parental education on children’s health and use of health services. Am J Public Health. 1999;89:1066-1071. 6. Guendelman S, Wagner TH. Health services utilization among Latinos and white non-Latinos: results from a national survey. J Health Care Poor Underserved. 2000;11:179-194. 7. Lieu T. Race, ethnicity, and access to ambulatory care among US adolescents. Am J Public Health. 1993;83:960-965. 8. Solis JM, Marks G, Garcia M, Shelton D. Acculturation, access to care, and use of preventive services by Hispanics: findings from HHANES 19821984. Am J Public Health. 1990;80(suppl):11-19. 9. Weinick RM, Krauss NA. Racial/ethnic differences in children’s access to care. Am J Public Health. 2000;90:1771-1774. 10. NC Latino Health 2003. Durham, NC: North Carolina Institute of Medicine; 2003. 11. Stedman’s Medical Dictionary for Health Professions and Nursing. 7th Edition. Baltimore, MD: Lippincott Williams & Wilkins; 2011. 12. Lo S, Sharif I, Ozuah PO. Health literacy Among English-speaking patients in a poor urban setting. J Health Care Poor Underserved. 2006;17:504-511. 13. Berkman ND, DeWalt DA, Pignone MP, et al. Literacy and Health Outcomes. Evid Rep Technol Assess (Summ). 2004;87:1-8. 14. Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL, Garcia P. The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. Am J Obstetric Gynecol. 2002;186:938-943. 15. Thomas EJ, Burstin HR, O’Neil AC, Oray EJ, Brennan TA. Patient noncompliance with medical advice after the emergency department visit. Ann Emerg Med. 1996;27:49-55. 16. Hohl CM, Abu-Laban RB, Brubacher JR, et al. Adherence to emergency department discharge prescriptions. CJEM. 2009;11:131-138. 17. Ginde AA, Weiner SG, Pallin DJ, Camargo CA. Multicenter study of limited health literacy in emergency department patients. Acad Emerg Med. 2008;15:577-580. 18. Brook RH, Stevenson RL. Effectiveness of patient care in an emergency room. N Engl J Med. 1970;283:904-907. 19. Soumerai SB, Ross-Degnan D, Avorn J, McLaughlin T, Choodnovskiy I. Effects of Medicaid drug-payment limits on admission to hospitals and nursing homes. N Engl J Med. 1991;325:1072-1077. 20. Vukmir RB, Kremen R, Dehart DA, Menegazzi J. Compliance with emergency department patient referral. Am J Emerg Med. 1992;10:413-417. 21. Easton P, Entwistle VA, Williams B. Health in the ‘hidden population’ of people with low literacy: A systematic review of the literature. BMC Public Health. 2010;10:459. 22. Gellad WF, Haas JS, Safran DG. Race/ethnicity and nonadherence to prescription medications among seniors: Results of a national study. J Gen Intern Med. 2007;22:1572-1578. 23. James TD, Smith, PC, Brice JH. Self-reported discharge instruction
Limitations of our study include self-reported adherence to discharge instructions, inherent limitations of the health literacy instrument, demographic differences in our 2 populations, and the use of a single center. Adherence to discharge instructions was self-reported, and the investigators did not independently verify whether or not patients had either filled their prescriptions or attended an appointment with the physician. Therefore, there is the possibility that subjects were not honest during the telephone interview and gave inaccurate responses. It is also possible that subjects gave positive socially acceptable answers, though we can think of no reason to suggest that this type of bias would be different based on FHL level. We used the TOFHLA-S test to assess health literacy in our Spanish-speaking patients. Though this test has been validated, it does not cater to the linguistic nuances of Spanish spoken by many of the immigrants who come from Central America and South America. We found a significant difference in the rates of insurance coverage between English-speaking patients and Spanish-speaking patients, thus conceivably making it more difficult for Spanish speakers to attend follow-up appointments or purchase prescribed medications. Previous studies have shown that insurance status affects adherence.44,45 Finally, our single-center study may reflect a specific immigration group from a narrow geographic area and might not represent all Spanish-speaking patients who originate from other parts of Latin America.
Conclusion
We found that Spanish-speaking patients with lower health literacy did not follow the instructions given them by emergency department health providers. As the Spanish-speaking population is one of the fastest-growing in the United States, further research is needed into how best to address the special needs of the Spanish-speaking population. Methods could be developed to easily and effectively identify patients with inadequate health literacy.38,46,47 Health literacy training should be incorporated into medical education for all physicians, nurses, and staff members so that health care providers can identify patients with low literacy skills and have the ability to respond adequately to those patients’ specific needs.15,18,48 ED and pharmacies can develop educational materials appropriate to lower reading abilities, including multiple media types such as verbal conversation, written text, pictures and 526 JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION
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