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| ORIGINAL ARTICLE |
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| Year : 2022 | Volume
: 2
| Issue : 3 | Page : 98-104 |
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The pain of pills: The lived experiences of cured tuberculosis patients
Janmejaya Samal
Independent Public Health Researcher, Bhubaneswar, Odisha, India
| Date of Submission | 02-Mar-2022 |
| Date of Acceptance | 27-Mar-2022 |
| Date of Web Publication | 17-Aug-2022 |
Correspondence Address:
Dr. Janmejaya Samal
C/O - Mr Bijaya Ketan Samal, At-Pansapalli, Po-Bangarada, Via-Gangapur, Ganjam - 761 123, Odisha
India
 Source of Support: None, Conflict of Interest: None
DOI: 10.4103/jalh.jalh_7_22
Background: Tuberculosis (TB) continues to be a major public health threat in India. Management of TB requires intake of multiple pills during the entire treatment period with strong repugnance by the patients and the family members as well.
Objective: The main objective was to understand the difficulties and challenges faced by TB patients while undergoing TB treatment.
Materials and Methods: Cured TB patients from urban slums in one of the cities of Chhattisgarh were interviewed in depth by the help of an open-ended semi-structured questionnaire. The interviews were transcribed verbatim and subsequently underwent an inductive thematic analysis.
Results: Of the 12 study participants, 25% constituted female patients; 16.6% constituted relapse cases; 16.6%, 8.3%, and 75% of the cases were diagnosed through chest X-ray, cartridge-based nucleic acid amplification test, and sputum examination, respectively. All the cases belong to an urban slum and are pulmonary TB cases. Two major thematic areas and 2 sub-themes were identified; (a) Pain of Pills (1. Load of pills, 2. Adverse effects of anti-TB drugs) and (b) Social Stigma (1. Concealment of treatment status, 2. Concealment of treatment success). Owing to the long duration of treatment, TB patients develop strong aversion toward pills and wish to complete the treatment before prescribed time-limit. Despite the progress made, TB patients are still being stigmatized in communities and many TB sufferers neither want to share their status as TB patients nor want to share the treatment success in their neighborhood. Sometimes, these patients feel exhausted, isolated and live with solitude with self-discrimination.
Conclusion: Health-care workers should be compassionate toward the stigma and aversion for treatment that becomes a part of many TB patient's life.
Keywords: Aversion for pills, cured tuberculosis patients, lived experiences, load of pills, tuberculosis
How to cite this article:
Samal J. The pain of pills: The lived experiences of cured tuberculosis patients. J Adv Lung Health 2022;2:98-104 |
| Introduction | |  |
Tuberculosis (TB) is a global public health threat and a leading cause of infectious disease-related deaths. An estimated 1.6 million deaths occur annually because of TB infection.[1] India contributes 28% of the global TB burden with reported annual incidence of 2.8 million cases in 2017.[1] Globally, TB is one of the top 10 causes of death and a leading cause from a single infectious agent above HIV.[1] Globally, TB incidence is falling and in almost all the WHO regional countries, however, the falling is not as fast as it is expected to reach thefirst milestone (2020) of end TB strategy. Accordingly, the TB incidence per 100,000 should come down to 4%–5% and the case fatality ratio should come down to 10%.[1] The current rate of decline in TB incidence is 2% annually and the fastest decline from 2013 to 2017 has been recorded in the WHO European Region (5% per year).[1]
WHO has recommended Directly Observed Treatment Short Course (DOTS) as an effective strategy to control TB globally.[2] The main objective of this short course is to achieve 70% case detection rate and 85% cure rate among new sputum-positive cases. Based on this DOTS strategy, India's Revised National TB control Program (RNTCP) was introduced in the year 1997. Although treatment success rate reported by RNTCP is satisfactory and India has already achieved the global target of 70% case detection rate and 85% cure rate among new smear-positive cases since 2007, the emergence of drug-resistant TB is causing a great concern in India.[3] Emergence of drug-resistant TB is strongly linked with nonadherence and noncompliance to TB treatment and is associated with many sociocultural determinants; aversion to take pills, desire to have shorter duration of treatment, load of pills, social stigma, and adverse drug reactions of anti-TB drugs.[4] This led to the emergence of drug-resistant TB in early 1990, extremely drug-resistant TB (XDR-TB) in 2006, and currently, totally drug-resistant TB in 2012 in India.[5]
Unfortunately, TB patients do not always cooperate with DOTS providers despite repeated attempts and in most instances, the patients themselves decide the timing of consuming the pills. Many times, this leads to adverse treatment outcome and incomplete treatment as well. Treatment adherence reflects the determination in the part of a TB patient in self-management of treatment regimen and the level of patient-provider interaction.[4] Studies have shown that adherence to anti-TB drugs leads to treatment success and minimization of emergence of drug-resistant TB[6] and the opposite leads to obvious treatment failure.[7] Thus, treatment adherence is a multifaceted behavioral phenomenon that needs to be understood properly.[8]
This study tried to understand the lived experiences of cued TB patients thereby understanding the aversion of taking pills/burden of pills/pain of taking pills and the associated social stigma. Had the patients been nonadherent they would not have been able to complete the treatment and got rid of TB. The study, however, did not dig into the factors that led them to be adherent and compliant to anti-TB treatment.
Objective
The main objective of the study was to assess the challenges and difficulties faced by TB patients who underwent anti-TB medication for a period of either 6 or 8 months based on the category of regimens they followed to complete the treatment. The study also tried to capture the attitude of these cured TB patients in sharing or not sharing the treatment success with the nearby community, indirectly assessing the prevailing social stigma associated with TB patients.
| Materials and Methods | | |
Settings and design
The participants in this study were TB patients who took the anti-TB drugs regularly and got rid of TB. The study was conducted among the urban slum dwellers in one of the cities of Chhattisgarh during 2019.
Materials and methods
The participants were interviewed in depth with the help of an open-ended semi-structured questionnaire and were transcribed verbatim. The treatment services to all the study participants were supported and facilitated by a group of community volunteers recruited and trained through a nongovernmental organization for this purpose only. Verbal consent was taken from each of the study participants.
Study tool
An open-ended semi-structured questionnaire consisting of 13 questions that inquired about the demographic profile, habitation, diagnosis, type of TB, treatment category and duration, challenges/difficulties/problems of taking medication, and social stigma associated with the same.
Analysis
The interviews were transcribed verbatim and inductive thematic analysis was conducted to do the analysis [Table 1].[9]
| Results | | |
The study participants consisted of 12 cured TB patients. Of the 12 study participants, 25% (3, n = 12) constituted female patients; 16.6% (2, n = 12) constituted relapse cases; 16.6% (2, n = 12), 8.3% (1, n = 12), and 75% (9, n = 12) of the cases were diagnosed through chest X-ray, cartridge-based nucleic acid amplification test and sputum examination, respectively. All the cases belonged to urban slum and are pulmonary TB cases. [Table 2] delineates the characteristics of cured TB patients who participated in the study.
[Table 3] delineates the challenges/difficulties/problems faced by these patients while undergoing TB treatment. Of the 12 participants, only 16.6% (2, n = 12) reported of not having any challenges/difficulties/problems while undergoing TB treatment and the rest 83.4% (10, n = 12) reported to have different types of challenges/difficulties/problems and adverse drug reactions while undergoing TB treatment. | Table 3: Challenges and discomfort faced by tuberculosis patients during treatment
Click here to view |
[Figure 1] reflects patients' efforts to spread or not spread the treatment success with the nearby community. Only 33.3% (4, n = 12) of the cured TB patients made effort to spread the message of treatment success thereby acting as a treatment ambassador in the community. This reflects the level of stigma associated with TB patients. Most of these patients did not want to disclose the fact that DOTS has brought smile in them and in their families and made them to lead a healthy and productive life after getting rid of TB. | Figure 1: Patients' interest to spread/not to spread the benefits of tuberculosis treatment with nearby community
Click here to view |
| Discussion | | |
The present study tried to understand the lived experiences of cured TB patients among the urban slum dwellers in one of the cities of Chhattisgarh. Although the patients developed strong aversion toward taking anti-TB drugs during different phases of their treatment, no one gave up the treatment and got rid of TB after successful, adherent, and compliant regimen. The study assessed the pain of pills through the lens of challenges, difficulties, and problems faced by these cured TB patients and associated social stigma pertinent to TB treatment in the community. Of the 12 cured TB patients interviewed in-depth, only two cured TB patients reported of not having any adverse effects following treatment and the rest of the cured TB patients reported of having one or the other forms of adverse effects during TB treatment. Most of these adverse effects are biological in nature and matches with pharmacological explanation, however, few do not match and are psychic in nature; such as feeling of warmth/hot drugs concept. Similarly, many patients reported about the load of pills as an important factor of strong aversion toward taking the pills.
In addition, the study also assessed that, although the patients have accessed health services and were taking medications regularly however they would have most likely faced stigma and that would have led to delayed access to health services; both diagnostic and treatment. This stigma remained intact with them and continued with them during the treatment which led them not to disclose about the treatment status and the treatment success as well. The following sections discusses about the four themes that emerged as a part of analysis.
Pain of pills (load of pills and adverse effects of anti-tuberculosis drugs)
As mentioned in [Table 1], it refers to the difficulties, challenges, and the problems faced by the cured TB patients while undergoing TB treatment. This combines both; load of pills and adverse drug reactions.
The treatment of TB patients involves ingestion of multiple pills and several rounds of investigations based on the type of TB case; a new case-both new sputum smear-positive and negative and an old case-failure, relapse, and default after treatment and the pertinent regimen; Category-1 or Category-II. The treatment duration and regimen also differ whether the case is a drug sensitive-TB or a drug-resistant TB case. In this study, all the cases were drug sensitive TB cases. 10 cases were new cases, of which 8 being new sputum smear-positive cases diagnosed through sputum microscopy and 2 being new sputum negative cases diagnosed clinically and through chest radiograph. The rest 2 cases were treatment defaulters. The new cases were taking Category-1 regimen for 6 months consisting of 2 months of intensive phase (IP) and 4 months of continuation phase (CP). During the IP, the patients need to take isoniazid, rifampicin, pyrazinamide, and ethambutol for 8 weeks daily and in CP, they need to take all the three drugs without pyrazinamide for 16 weeks daily, as per weight bands. Similarly, the treatment defaulters need to take medications for 8 months consisting of IP for 3 months and CP for 5 months. During IP, the patients need to take isoniazid, rifampicin, pyrazinamide, and ethambutol and injection streptomycin where the injection is meant for 8 months only and during the CP, the patients need to take isoniazid, rifampicin, and ethambutol for 20 months, as per weight bands.[10]
Hence, it is evident from the regimen that the patients need to take multiple pills for a long duration to get rid of TB which becomes a challenge for them. For many patients, the load of pills is a matter of concern as nonadherent and noncompliant treatment leads to treatment failure and drug-resistant TB. Frustrated with pill load two of the study participants reported that;
Itistoomuch;Iamtakingmedicineshere(referringtoDOTS)andIamalsogoingtheretotakemedicines(referringtoARTcenter).Pleasehelpme;WhencanIcompletemytreatment.
-One of the TB-HIV co-infected patient
IfIhavetotaketabletsIwon'ttakeinjectionsandifIhavetotakeinjectionsIcan'ttaketablets.Thisistoomuch.Moreover,tellthedoctororcompoundertoinjectmeathome. I cannotaffordtogotothehospitaldailyforinjection.
-A default-after-treatment case
One of the studies assessing the barriers to treatment adherence in West Bengal revealed similar findings where patients were nonadherent to anti-TB treatment owing to load of pills and long duration of treatment.[11] Studies also reveal that long duration and complicated regimen is negatively correlated with treatment completion[12] which is not the case in this study, however, the same posed a challenge among many patients in this study. A systematic review of qualitative research assessing the treatment adherence revealed that unpleasant taste of pills contributes to nonadherence to TB treatment among others.[13] Studies reveal that HIV-TB co-infected patients report nonadherence owing to increased pill burden and occurrence of adverse effects.[14]
As mentioned, except 2 cured TB patients, all the 10 patients reported to face adverse effects of ant-TB drugs which are supported by many studies.[11],[15],[16],[17] Patients reported that;
WhenIstartedtakingthetabletsIfeltworried,painonknee,giddiness,nausea,feelingofheatsensationandsleeplessness. I feltthesedrugsareverystrongandhotinnature.
-A sputum smear positive TB case
The RNTCP guideline on therapeutic management of TB reports all these side effects due to consumption of isoniazid, rifampicin, pyrazinamide, and ethambutol,[10] however, it does not mention about the concept of strong and hot drugs. In many settings, especially in rural settings people believe some drugs as hot and strong drugs.[18] Hence, authorities mention that the adverse effects could be real, anticipated, and culturally interpreted.[13] Studies reveal that patients stop taking medicines because of adverse effects[19] and others reveal that patients were not told/counseled about the side effects and the strategies to deal with them.[17],[20] Studies also reveal that health-care providers do not take care of the adverse effects reported by patients and many a time respond scathingly.[20]
Interestingly, the study assessed the lived experiences of patients who completed TB treatment with good compliance rate and is evident from one of the patients who responded that;
Notension(donotworry),Iamtakingmedicinesregularly.
-A sputum smear positive TB case
The journey to fruitful treatment completion and getting rid of TB among all these patients is not very easy and most of them had faced one or the other types of adverse effects of medicine and many of them had reported the burden of taking pills for long duration. The patients had to face social stigma and the same is narrated in the following section.
Social stigma (concealment of treatment status and concealment of treatment success)
Social stigma is one of the major determinants of health.[21] It is found to be a major barrier in accessing health services; both diagnostic and treatment services.[22] Health seeking behavior of TB is very strongly affected by the social stigma prevailed among different communities.[23],[24],[25] Research reveals that mostly patients delay in accessing health services owing to social stigma which would have happened with this group of cured TB patients as well. However, after accessing the health services, the patients started taking the medications and got rid of the disease but did not want to disclose their status and were also not in favor of spreading the benefit of treatment success by acting as “TB Ambassadors.”[26]
The study found that patients, during the treatment process, did not want to disclose the treatment status to anybody. They wanted to keep the treatment going with full confidentiality and responded that;
IhavenotsharedwithanybodyaboutmyTBstatus. I alsorequestyounottosharewithanybodyandyoualsodonotcomeregularly.WheneverIfeelanycomplicationIwillcallyouorMitanin(AccreditedSocialHealthActivist).
-A sputum smear-positive TB case
NeitherIhavesharedwithanybodythatIamaTBpatientnortoldthatIamtakinganyTBmedicine.
-A sputum smear-positive TB case
The main reason of not disclosing the status of treatment is because of stigma and discrimination. One of the recent studies conducted among 3823 respondents from general population in 30 districts of India revealed that 73% and 98% of the respondents were having stigmatizing and discriminatory attitude toward TB patients and are independent of their knowledge regarding TB.[27] A recent mixed-method study identified that social stigma and discrimination is one of the most important factors in delayed access to health services; both diagnostic and treatment services among the TB patients.[28]
Owing to such stigma and discrimination, only 33% (n = 12) shared their treatment success in their neighborhood. It is very significant from the program point that if a previously treated and cured TB patient shares his/her experience and persuade the community regarding the benefit of the same, then the delays related to help seeking, stigma, discrimination decreases drastically, and the level of adherence and compliance increases proportionately. With such fear of stigmatization and discrimination, two of these cured TB patients responded that;
IamnotaTBpatientbutthesegirls(theDOTSproviders)forcedmetotakeTBmedicines.
-A relapse case
IhavenotsharedanyinformationaboutmydiseasewithanybodyandIhavealsorequestedmyfamilymemberstodoso;whyshouldIshare….
Imaylosemywork.
-A sputum smear-positive TB case
Authorities claim that the dimension of stigma is neither exhaustive nor mutually exclusive in relation to social maladies like TB. The dimensions inextricably linked with the social positioning of an individual.[29] A systematic review on social stigma for TB reported about three different thematic areas in case of social stigma; shame, isolation, and fear. Shame in relation to TB views the disease as a bad one, isolation involves withdrawal from social contacts and banishment of contacts by other people and fear is the repercussion of the difficulties associated with TB. These three thematic areas are found to be operated at individual, family, and community level.[30] In the context of Indian society, harassment by in-laws, difficulty in getting married, or dismissal from the work were reported as major barriers for women to get appropriate treatment for TB. Social stigma, lack of scientific awareness about the disease, and social commitments are other stated reasons for interrupting and defaulting from the treatment.[31]
Despite this, there are some patients who gets empowered through health education and rise above in the social hierarchy and spread the message of treatment success in the neighborhood. One of the patients reported that;
Yes,IsharedmyexperiencewithmanypeoplethatIwassufferingfromTBandItookGovernmentmedicationsandgotridofit.
-A sputum smear-positive TB case
Thus, health education with right information empowers TB patients and is evident from one of the studies conducted in the same state. Urban slum dwellers were educated through a structured TB awareness strategy thereby improving their access to health care and allaying their fear for stigma and discrimination.[32] It is evident from this study that TB patients showed adherent and compliant behavior and completed the treatment thereby getting rid of TB, however, the challenges, difficulties, and problems faced by these groups of patients while taking medicine and the stigma and discrimination cannot be neglected. Despite the progress made, TB patients are still being stigmatized in communities and many TB sufferers neither want to share their status as TB patients nor want to share the treatment success in their neighborhood. Thus, it is imperative in the part of health system to be sympathetic toward TB patients and take appropriate care for them at every step of the care process.
| Conclusion | | |
TB control program is progressing and the morbidity and mortality due to TB are declining in many parts of the globe, however, the pace is not as per the expected rate. Although the scientific approach to TB care has improved in many different facets; be it diagnostic or treatment services, many communities still struggle with the basic social determinants of TB care. Stigma and discrimination still exist and fear for the same among the TB patient equally exist in communities. National TB control programs take appropriate measures toward advocacy, communication, and social mobilization activities, however, these activities need further focus to improve positive behavioral change toward health-seeking behavior which would ultimately lead to timely care seeking both for diagnostic and treatment services. Health-care workers should be compassionate toward the stigma and the aversion that gets developed as a part of long-term TB treatment. The health-care workers should inform about the common possible adverse effects of anti-TB drugs and the strategies to address these problems. They should be empathetic enough while dealing with challenges encountered by the TB patient as TB is a social malady and not purely a clinical entity.
Financial support and sponsorship
Nil.
Conflicts of interest
There are no conflicts of interest.
| References | | |
| 1. | World Health Organization. Global Tuberculosis Report 2018. Geneva: World Health Organization; 2018.  |
| 2. | WHO. The Origins of DOTS. Research for Action: Understanding and Controlling TB in India. New Delhi: SEARO, WHO; 2000. |
| 3. | Samal J. Ways and means to utilize private practitioners for tuberculosis care in India. J Clin Diagn Res 2017;11:LA01-4. |
| 4. | Sumartojo E. When tuberculosis treatment fails. A social behavioral account of patient adherence. Am Rev Respir Dis 1993;147:1311-20. |
| 5. | |
| 6. | Paramasivan CN, Venkataraman P. Drug resistance in tuberculosis in India. Indian J Med Res 2004;120:377-86. |
| 7. | Xu W, Lu W, Zhou Y, Zhu L, Shen H, Wang J. Adherence to anti-tuberculosis treatment among pulmonary tuberculosis patients: A qualitative and quantitative study. BMC Health Serv Res 2009;9:169. |
| 8. | Sophia V, Balasangameswara VH, Jagannatha PS, Saroja VN, Kumar P. Defaults among tuberculosis patients treated under DOTS in Bangalore city: A research for solution. Indian J Tuberc 2003;50:185-95. |
| 9. | Sgier L. Qualitative data analysis. An initiat. Gebert Ruf Stift 2012;19:19-21. |
| 10. | Revised National Control Programme: Technical and Operational Guidelines for Tuberculosis Control in India. Central TB Division, Directorate General of Health Services, Ministry of Health and Family Welfare, New Delhi, India; 2016. |
| 11. | Bhattacharya T, Ray S, Biswas P, Das K. Barriers to treatment adherence of tuberculosis patients: A qualitative study in West Bengal, India. Int J Med Sci Public Health 2018;7:396-402. |
| 12. | Pope DS, Chaisson RE. TB treatment: As simple as DOT? Int J Tuberc Lung Dis 2003;7:611-5. |
| 13. | Munro SA, Lewin SA, Smith HJ, Engel ME, Fretheim A, Volmink J. Patient adherence to tuberculosis treatment: A systematic review of qualitative research. PLoS Med 2007;4:e238. |
| 14. | Joseph HA, Shrestha-Kuwahara R, Lowry D, Lambert LA, Panlilio AL, Raucher BG, et al. Factors influencing health care workers' adherence to work site tuberculosis screening and treatment policies. Am J Infect Control 2004;32:456-61. |
| 15. | Deshmukh RD, Dhande DJ, Sachdeva KS, Sreenivas A, Kumar AM, Satyanarayana S, et al. Patient and provider reported reasons for lost to follow up in MDRTB treatment: A qualitative study from a drug resistant TB Centre in India. PLoS One 2015;10:e0135802. |
| 16. | Jaiswal A, Singh V, Ogden JA, Porter JD, Sharma PP, Sarin R, et al. Adherence to tuberculosis treatment: Lessons from the urban setting of Delhi, India. Trop Med Int Health 2003;8:625-33. |
| 17. | Wares DF, Singh S, Acharya AK, Dangi R. Non-adherence to tuberculosis treatment in the eastern Tarai of Nepal. Int J Tuberc Lung Dis 2003;7:327-35. |
| 18. | Mac JT, Doordan A, Carr CA. Evaluation of the effectiveness of a directly observed therapy program with Vietnamese tuberculosis patients. Public Health Nurs 1999;16:426-31. |
| 19. | Sebastian MS, Bothamley GH. Tuberculosis preventive therapy: Perspective from a multi-ethnic community. Respir Med 2000;94:648-53. |
| 20. | Singh V, Jaiswal A, Porter JD, Ogden JA, Sarin R, Sharma PP, et al. TB control, poverty, and vulnerability in Delhi, India. Trop Med Int Health 2002;7:693-700. |
| 21. | Heijnders M, Van Der Meij S. The fight against stigma: An overview of stigma-reduction strategies and interventions. Psychol Health Med 2006;11:353-63. |
| 22. | Murray EJ, Bond VA, Marais BJ, Godfrey-Faussett P, Ayles HM, Beyers N. High levels of vulnerability and anticipated stigma reduce the impetus for tuberculosis diagnosis in Cape Town, South Africa. Health Policy Plan 2013;28:410-8. |
| 23. | Samal J. Health seeking behaviour among tuberculosis patients in India: A systematic review. J Clin Diagn Res 2016;10:LE01-6. |
| 24. | Samal J. A review of literature on delays in seeking care for tuberculosis in different Indian states. BLDE Univ J Health Sci 2017;2:4. [Full text] |
| 25. | Samal J. Health system and policy perspectives of multidrug-resistant tuberculosis (MDR-TB) Control in India. J Dev Policy Pract 2018;3:1-5. |
| 26. | Samal J, Jonnalagada S, Ekka N, Singh L. Role of 'patient sensitization on patient charter'for tuberculosis care and support: The beneficiaries' perspective. Egypt J Bronchol 2019;13:267. [Full text] |
| 27. | Sagili KD, Satyanarayana S, Chadha SS. Is knowledge regarding tuberculosis associated with stigmatising and discriminating attitudes of general population towards tuberculosis patients? Findings from a Community Based Survey in 30 Districts of India. PLoS One 2016;11:e0147274. |
| 28. | Mundra A, Kothekar P, Deshmukh PR, Dongre A. Why tuberculosis patients under revised national tuberculosis control programme delay in health-care seeking? A mixed-methods research from Wardha District, Maharashtra. Indian J Public Health 2019;63:94-100. [ PUBMED] [Full text] |
| 29. | Daftary A. HIV and tuberculosis: The construction and management of double stigma. Soc Sci Med 2012;74:1512-9. |
| 30. | Juniarti N, Evans D. A qualitative review: The stigma of tuberculosis. J Clin Nurs 2011;20:1961-70. |
| 31. | Uplekar MW, Rangan S. Tackling TB: Search for Solutions. Bombay: The Foundation for Research in Community Health; 1996. |
| 32. | Samal J, Dehury RK. Impact of a structured tuberculosis awareness strategy on the knowledge and behaviour of the families in a Slum Area in Chhattisgarh, India. J Clin Diagn Res 2017;11:LC11-5. |
[Figure 1]
[Table 1], [Table 2], [Table 3]
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