Journal Article > ResearchFull Text
Affilia
Affilia journal of women and social work. 2023 March 28; Volume 39 (Issue 1); 148-169.; DOI:10.1177/08861099231162582
Mahbub T, Mathur T, Isaakidis P, Daftary A
Affilia
Affilia journal of women and social work. 2023 March 28; Volume 39 (Issue 1); 148-169.; DOI:10.1177/08861099231162582
Stigma related to drug-resistant tuberculosis (DR-TB), one of the world's most severe infectious diseases, is a major barrier to TB elimination particularly for women living in settings of gender inequity. Drawing on the participatory action research (PAR) framework of photovoice, we explored lived experiences of DR-TB stigma among nine affected women in Mumbai, India. Consenting women took, shared, and contributed to the critical interpretation of 37 non-identifying images and associated narratives with one another and with PAR researchers. The study surfaced vivid, untold stories of trauma and life-altering encounters with enacted, anticipated, and internal stigma, that were characterized by loss (of self, voice, status, mobility), abuse (mental, social) and deep internal distress (shame, isolation, suffocation, peril). The study also revealed how stigmatized women found means to build resilience and resist the impacts of stigma. We further witnessed the building of their collective resilience through study participation. Photovoice proved to be a uniquely compelling method of data capture and interpretation, with potential to develop meaningful engagement and solidarity among women affected by DR-TB.
Journal Article > ResearchFull Text
PLOS One. 2022 February 11; Volume 17 (Issue 2); e0263759.; DOI:10.1371/journal.pone.0263759
Laxmeshwar C, Das M, Mathur T, Israni T, Jha S, et al.
PLOS One. 2022 February 11; Volume 17 (Issue 2); e0263759.; DOI:10.1371/journal.pone.0263759
BACKGROUND
People with drug-resistant tuberculosis (DR-TB) are known to suffer from many mental-health disorders. This study aims to describe the proportion of patients diagnosed with psychiatric comorbidities, the different psychiatric diagnoses made, and treatment outcomes among DR-TB patients with or without psychiatric comorbidity and initiated on DR-TB treatment between January 2012 and March 2019 at Médecins Sans Frontières independent clinic in Mumbai, India.
METHODS
This is a retrospective study using routinely collected clinical data. DR-TB care included individualised treatment, psychosocial support, and integrated psychiatric care.
RESULTS
During the study period, 341 DR-TB patients were enrolled, with a median age of 25 years (IQR:20.0-36.5 years), 185 (54.2%) females, 143 (41.9%) with PreXDR-TB, and 140 (41.0%) with XDR-TB. All 341 patients were screened by a counsellor, 119 (34.9%) were referred for psychiatric evaluation, and 102 (29.9% of 341) were diagnosed with a psychiatric comorbidity. Among 102 diagnosed with a psychiatric comorbidity, 48 (47.0%) were diagnosed at baseline, and 86 (84.3%), or 25.2% of all 341 patients enrolled, were treated with psychotropic drugs. Depressive disorders were diagnosed in 49 (48.0%), mixed anxiety and depression in 24 (23.5%), neurocognitive disorders and anxiety in five (4.9%), and medication induced psychosis in two (2.0%). No anti-TB drugs were significantly associated with psychiatric comorbidities developed during treatment. Of 102 DR-TB patients with a psychiatric comorbidity, 75.5% (77) had successful DR-TB treatment outcomes, compared to 61.1% (146/239) not diagnosed with a psychiatric comorbidity (p = 0.014).
CONCLUSION
In our setting, among people started on DR-TB treatment, and with a complex TB resistance profile, about one in three patients experienced a psychiatric comorbidity, of which half developed this comorbidity during treatment. With comprehensive psychiatric care integrated into DR-TB care delivery, treatment outcomes were at least as good among those with psychiatric comorbidities compared to those without such comorbidities.
People with drug-resistant tuberculosis (DR-TB) are known to suffer from many mental-health disorders. This study aims to describe the proportion of patients diagnosed with psychiatric comorbidities, the different psychiatric diagnoses made, and treatment outcomes among DR-TB patients with or without psychiatric comorbidity and initiated on DR-TB treatment between January 2012 and March 2019 at Médecins Sans Frontières independent clinic in Mumbai, India.
METHODS
This is a retrospective study using routinely collected clinical data. DR-TB care included individualised treatment, psychosocial support, and integrated psychiatric care.
RESULTS
During the study period, 341 DR-TB patients were enrolled, with a median age of 25 years (IQR:20.0-36.5 years), 185 (54.2%) females, 143 (41.9%) with PreXDR-TB, and 140 (41.0%) with XDR-TB. All 341 patients were screened by a counsellor, 119 (34.9%) were referred for psychiatric evaluation, and 102 (29.9% of 341) were diagnosed with a psychiatric comorbidity. Among 102 diagnosed with a psychiatric comorbidity, 48 (47.0%) were diagnosed at baseline, and 86 (84.3%), or 25.2% of all 341 patients enrolled, were treated with psychotropic drugs. Depressive disorders were diagnosed in 49 (48.0%), mixed anxiety and depression in 24 (23.5%), neurocognitive disorders and anxiety in five (4.9%), and medication induced psychosis in two (2.0%). No anti-TB drugs were significantly associated with psychiatric comorbidities developed during treatment. Of 102 DR-TB patients with a psychiatric comorbidity, 75.5% (77) had successful DR-TB treatment outcomes, compared to 61.1% (146/239) not diagnosed with a psychiatric comorbidity (p = 0.014).
CONCLUSION
In our setting, among people started on DR-TB treatment, and with a complex TB resistance profile, about one in three patients experienced a psychiatric comorbidity, of which half developed this comorbidity during treatment. With comprehensive psychiatric care integrated into DR-TB care delivery, treatment outcomes were at least as good among those with psychiatric comorbidities compared to those without such comorbidities.
Journal Article > ResearchFull Text
PLOS One. 2021 March 10; Volume 16 (Issue 3); DOI:10.1371/journal.pone.0248408
Das M, Mathur T, Ravi S, Meneguim A, Iyer AS, et al.
PLOS One. 2021 March 10; Volume 16 (Issue 3); DOI:10.1371/journal.pone.0248408
Background: Childhood multidrug-resistant TB (MDR-TB) still affects around 25000 children every year across the globe. Though the treatment success rates for drug-resistant TB (DR-TB) in children are better than adults, children and adolescents face unique hurdles during DR-TB (MDR-TB, Pre-XDR TB and XDR-TB) treatment. This study aimed to understand the patients, guardians and healthcare providers' perspectives about DR-TB treatment journey of patients and caregivers.
Methods: This is a qualitative study involving in depth-interviews of purposively selected adolescents (n = 6), patients guardians (for children and adolescents, n = 5) and health care providers (n = 8) of Médecins Sans Frontières (MSF) clinic, Mumbai, India. In-depth face to face interviews were conducted in English or Hindi language using interview guides during September-November 2019. The interviews were audio-recorded after consent. Thematic network analysis was used to summarize textual data. ATLAS.ti (version 7) was used for analysis.
Result: The age of adolescent patients ranged from 15-19 years and four were female. Five guardians (of three child and two adolescent patients) and eight healthcare providers (including clinicians- 2, DOT providers-2, counselors-2 and programme managers-2) were interviewed. The overarching theme of the analysis was: Challenging DR-TB treatment journey which consisted of four sub-themes: 1) physical-trauma, 2) emotional-trauma, 3) unavailable social-support and 4) non-adapted healthcare services. Difficulties in compounding of drugs were noted for children while adolescents shared experiences around disruption in social life due to disease and treatment. Most of the patients and caregivers experienced treatment fatigue and burnout during the DR-TB treatment. Participants during interviews gave recommendations to improve care.
Discussion: The TB programmes must consider the patient and family as one unit when designing the package of care for paediatric DR-TB. Child and adolescent friendly services (paediatric-formulations, age-specific counselling tools and regular interaction with patients and caregivers) will help minimizing burnout in patients and caregivers.
Methods: This is a qualitative study involving in depth-interviews of purposively selected adolescents (n = 6), patients guardians (for children and adolescents, n = 5) and health care providers (n = 8) of Médecins Sans Frontières (MSF) clinic, Mumbai, India. In-depth face to face interviews were conducted in English or Hindi language using interview guides during September-November 2019. The interviews were audio-recorded after consent. Thematic network analysis was used to summarize textual data. ATLAS.ti (version 7) was used for analysis.
Result: The age of adolescent patients ranged from 15-19 years and four were female. Five guardians (of three child and two adolescent patients) and eight healthcare providers (including clinicians- 2, DOT providers-2, counselors-2 and programme managers-2) were interviewed. The overarching theme of the analysis was: Challenging DR-TB treatment journey which consisted of four sub-themes: 1) physical-trauma, 2) emotional-trauma, 3) unavailable social-support and 4) non-adapted healthcare services. Difficulties in compounding of drugs were noted for children while adolescents shared experiences around disruption in social life due to disease and treatment. Most of the patients and caregivers experienced treatment fatigue and burnout during the DR-TB treatment. Participants during interviews gave recommendations to improve care.
Discussion: The TB programmes must consider the patient and family as one unit when designing the package of care for paediatric DR-TB. Child and adolescent friendly services (paediatric-formulations, age-specific counselling tools and regular interaction with patients and caregivers) will help minimizing burnout in patients and caregivers.
Conference Material > Slide Presentation
Das M, Mathur T, Ravi S, Meneguim A, Iyer AS, et al.
MSF Scientific Days International 2021: Research. 2021 May 19
Journal Article > ResearchFull Text
PLOS One. 2020 May 5; Volume 15 (Issue 5); e0232576.; DOI:10.1371/journal.pone.0232576
Laxmeshwar C, Acharya S, Das M, Keskar P, Pazare A, et al.
PLOS One. 2020 May 5; Volume 15 (Issue 5); e0232576.; DOI:10.1371/journal.pone.0232576
BACKGROUND
Routine viral-load (VL) measurements along with enhanced adherence counselling (EAC) are recommended to achieve virological suppression among people living with HIV/AIDS (PLHA) on anti-retroviral therapy (ART). The Mumbai Districts AIDS Control Society along with Médecins Sans Frontières has provided routine VL measurements and EAC to PLHA on ART at King Edward Memorial (KEM) hospital, Mumbai since October-2016. This study aims to describe the initial VL results and impact of EAC on viral suppression and factors associated with initial viral non-suppression among patients with an initial detectable VL, in a cohort of patients tested between October-2016 and September-2018.
METHODS
This is a descriptive study of PLHA on ART who received VL testing and EAC during October-2016 to September-2018. Log-binomial regression was used to identify factors associated with a high VL.
RESULTS
Among 3849 PLHA who underwent VL testing, 1603(42%) were female and median age was 42 years (IQR:35–48). Majority were referred for routine testing (3432(89%)) and clinical/immunological failure (233(6%)). Overall, 3402(88%) PLHA had suppressed VL at initial testing. Among 3432 tested for routine monitoring, 3141(92%) had VL suppressed. Of 291 with VL>1000c/ml, 253(87%) received EAC and after repeat VL, 70(28%) had VL<1000c/ml. Among 233 referred for clinical/immunological failure, 122(52%) had VL>1000c/ml and 109 have been switched to second-line ART.
CD4 count<500 (aOR-5.0[95%CI 3.8–6.5]), on ART for<5 years (aOR-1.5[1.1–2.0]) and age<15 years (aOR-5.2[3.0–8.9]) were associated with an initial VL>1000c/ml. Factors associated with follow-up VL suppression included EAC (p<0.05) and being on second-line ART (p<0.05).
CONCLUSION
Results from a routine VL program in public sector in India were encouraging and in line with UNAIDS 90-90-90 targets. Routine VL monitoring along with EAC resulted in early switch to alternative optimised regimens while also preventing unnecessary switches. Along with the vital scale up of routine VL monitoring, implementation of enhanced adherence strategies for patients with detectable viral load should be ensured.
Routine viral-load (VL) measurements along with enhanced adherence counselling (EAC) are recommended to achieve virological suppression among people living with HIV/AIDS (PLHA) on anti-retroviral therapy (ART). The Mumbai Districts AIDS Control Society along with Médecins Sans Frontières has provided routine VL measurements and EAC to PLHA on ART at King Edward Memorial (KEM) hospital, Mumbai since October-2016. This study aims to describe the initial VL results and impact of EAC on viral suppression and factors associated with initial viral non-suppression among patients with an initial detectable VL, in a cohort of patients tested between October-2016 and September-2018.
METHODS
This is a descriptive study of PLHA on ART who received VL testing and EAC during October-2016 to September-2018. Log-binomial regression was used to identify factors associated with a high VL.
RESULTS
Among 3849 PLHA who underwent VL testing, 1603(42%) were female and median age was 42 years (IQR:35–48). Majority were referred for routine testing (3432(89%)) and clinical/immunological failure (233(6%)). Overall, 3402(88%) PLHA had suppressed VL at initial testing. Among 3432 tested for routine monitoring, 3141(92%) had VL suppressed. Of 291 with VL>1000c/ml, 253(87%) received EAC and after repeat VL, 70(28%) had VL<1000c/ml. Among 233 referred for clinical/immunological failure, 122(52%) had VL>1000c/ml and 109 have been switched to second-line ART.
CD4 count<500 (aOR-5.0[95%CI 3.8–6.5]), on ART for<5 years (aOR-1.5[1.1–2.0]) and age<15 years (aOR-5.2[3.0–8.9]) were associated with an initial VL>1000c/ml. Factors associated with follow-up VL suppression included EAC (p<0.05) and being on second-line ART (p<0.05).
CONCLUSION
Results from a routine VL program in public sector in India were encouraging and in line with UNAIDS 90-90-90 targets. Routine VL monitoring along with EAC resulted in early switch to alternative optimised regimens while also preventing unnecessary switches. Along with the vital scale up of routine VL monitoring, implementation of enhanced adherence strategies for patients with detectable viral load should be ensured.
Conference Material > Video (talk)
Mathur T
MSF Scientific Days International 2021: Innovation. 2021 May 20
Journal Article > ResearchFull Text
Clin Infect Dis. 2021 November 2; Volume 73 (Issue 9); e3496-e3504.; DOI:10.1093/cid/ciaa1577
Das M, Dalal A, Laxmeshwar C, Ravi S, Mamnoon F, et al.
Clin Infect Dis. 2021 November 2; Volume 73 (Issue 9); e3496-e3504.; DOI:10.1093/cid/ciaa1577
BACKGROUND
The Médecins Sans Frontières clinic in Mumbai, India, has been providing concomitant bedaquiline (BDQ) and delamanid (DLM) in treatment regimen for patients with drug-resistant tuberculosis (DR-TB) and limited therapeutic options, referred from other healthcare institutions, since 2016. The study documents the end-of-treatment outcomes, culture-conversion rates, and serious adverse events (SAEs) during treatment.
METHODS
This was a retrospective cohort study based on routinely collected program data. In clinic, treatment regimens are designed based on culture drug sensitivity test patterns and previous drug exposures, and are provided for 20-22 months. BDQ and DLM are extended beyond 24 weeks as off-label use. Patients who initiated DR-TB treatment including BDQ and DLM (concomitantly for at least 4 weeks) during February 2016-February 2018 were included.
RESULTS
Of the 70 patients included, the median age was 25 (interquartile range [IQR], 22-32) years and 56% were females. All except 1 were fluoroquinolone resistant. The median duration of exposure to BDQ and DLM was 77 (IQR, 43-96) weeks. Thirty-nine episodes of SAEs were reported among 30 (43%) patients, including 5 instances of QTc prolongation, assessed as possibly related to BDQ and/or DLM. The majority (69%) had culture conversion before 24 weeks of treatment. In 61 (87%), use of BDQ and DLM was extended beyond 24 weeks. Successful end-of-treatment outcomes were reported in 49 (70%) patients.
CONCLUSIONS
The successful treatment outcomes of this cohort show that regimens including concomitant BDQ and DLM for longer than 24 weeks are effective and can be safely administered on an ambulatory basis. National TB programs globally should scale up access to life-saving DR-TB regimens with new drugs.
The Médecins Sans Frontières clinic in Mumbai, India, has been providing concomitant bedaquiline (BDQ) and delamanid (DLM) in treatment regimen for patients with drug-resistant tuberculosis (DR-TB) and limited therapeutic options, referred from other healthcare institutions, since 2016. The study documents the end-of-treatment outcomes, culture-conversion rates, and serious adverse events (SAEs) during treatment.
METHODS
This was a retrospective cohort study based on routinely collected program data. In clinic, treatment regimens are designed based on culture drug sensitivity test patterns and previous drug exposures, and are provided for 20-22 months. BDQ and DLM are extended beyond 24 weeks as off-label use. Patients who initiated DR-TB treatment including BDQ and DLM (concomitantly for at least 4 weeks) during February 2016-February 2018 were included.
RESULTS
Of the 70 patients included, the median age was 25 (interquartile range [IQR], 22-32) years and 56% were females. All except 1 were fluoroquinolone resistant. The median duration of exposure to BDQ and DLM was 77 (IQR, 43-96) weeks. Thirty-nine episodes of SAEs were reported among 30 (43%) patients, including 5 instances of QTc prolongation, assessed as possibly related to BDQ and/or DLM. The majority (69%) had culture conversion before 24 weeks of treatment. In 61 (87%), use of BDQ and DLM was extended beyond 24 weeks. Successful end-of-treatment outcomes were reported in 49 (70%) patients.
CONCLUSIONS
The successful treatment outcomes of this cohort show that regimens including concomitant BDQ and DLM for longer than 24 weeks are effective and can be safely administered on an ambulatory basis. National TB programs globally should scale up access to life-saving DR-TB regimens with new drugs.
Journal Article > ResearchFull Text
Clin Infect Dis. 2020 October 20; DOI:10.1093/cid/ciaa1577
Das M, Dalal A, Laxmeshwar C, Ravi S, Mamnoon F, et al.
Clin Infect Dis. 2020 October 20; DOI:10.1093/cid/ciaa1577
Background
Médecins Sans Frontières clinic in Mumbai, India has been providing concomitant Bedaquiline (BDQ) and Delamanid (DLM) in treatment regimen for patients with drug-resistant tuberculosis (DR-TB) and limited therapeutic options, referred from other healthcare institutions, since 2016. The study documents the end-of-treatment outcomes, culture-conversion rates, and serious adverse events (SAEs) during treatment.
Methods
This was a retrospective cohort study based on routinely collected programme data. In clinic, treatment regimens are designed based on culture-drug sensitivity test patterns, previous drug-exposures and are provided for 20-22 months. The BDQ and DLM are extended beyond 24 weeks as off-label use. Patients who initiated DR-TB treatment including BDQ and DLM (concomitantly for at least 4 weeks) during February2016-February2018 were included.
Result
Of the 70 patients included, the median (IQR) age was 25(22-32) years and 56% were females. All except one were fluoroquinolone resistant. The median(IQR) duration of exposure to BDQ and DLM was 77(43-96) weeks. Thirty-nine episodes of serious-adverse-events(SAEs) were reported among 30(43%) patients, including five instances of QTc prolongation-assessed as possibly related to BDQ and/or DLM. Majority(69%) had culture conversion before 24 weeks of treatment. In 61(87%), use of BDQ and DLM was extended beyond 24 weeks. Successful end-of-treatment outcomes were reported in 49(70%) patients.
Conclusion
The successful treatment outcomes of this cohort show that regimens including concomitant bedaquiline and delamanid for longer than 24 weeks are effective and can be safely administered on ambulatory basis. National TB programmes globally should scale up access to life saving DR-TB regimens with new drugs.
Médecins Sans Frontières clinic in Mumbai, India has been providing concomitant Bedaquiline (BDQ) and Delamanid (DLM) in treatment regimen for patients with drug-resistant tuberculosis (DR-TB) and limited therapeutic options, referred from other healthcare institutions, since 2016. The study documents the end-of-treatment outcomes, culture-conversion rates, and serious adverse events (SAEs) during treatment.
Methods
This was a retrospective cohort study based on routinely collected programme data. In clinic, treatment regimens are designed based on culture-drug sensitivity test patterns, previous drug-exposures and are provided for 20-22 months. The BDQ and DLM are extended beyond 24 weeks as off-label use. Patients who initiated DR-TB treatment including BDQ and DLM (concomitantly for at least 4 weeks) during February2016-February2018 were included.
Result
Of the 70 patients included, the median (IQR) age was 25(22-32) years and 56% were females. All except one were fluoroquinolone resistant. The median(IQR) duration of exposure to BDQ and DLM was 77(43-96) weeks. Thirty-nine episodes of serious-adverse-events(SAEs) were reported among 30(43%) patients, including five instances of QTc prolongation-assessed as possibly related to BDQ and/or DLM. Majority(69%) had culture conversion before 24 weeks of treatment. In 61(87%), use of BDQ and DLM was extended beyond 24 weeks. Successful end-of-treatment outcomes were reported in 49(70%) patients.
Conclusion
The successful treatment outcomes of this cohort show that regimens including concomitant bedaquiline and delamanid for longer than 24 weeks are effective and can be safely administered on ambulatory basis. National TB programmes globally should scale up access to life saving DR-TB regimens with new drugs.
Journal Article > LetterFull Text
Int J Tuberc Lung Dis. 2020 October 1; Volume 24; DOI:10.5588/ijtld.20.0537
Meneguim A, Rebello L, Das M, Ravi S, Mathur T, et al.
Int J Tuberc Lung Dis. 2020 October 1; Volume 24; DOI:10.5588/ijtld.20.0537
Conference Material > Abstract
Das M, Mathur T, Ravi S, Meneguim A, Iyer AS, et al.
MSF Scientific Days International 2021: Research. 2021 May 19
INTRODUCTION
Drug-resistant TB (DR-TB) still affects around 25,000 children every year worldwide. Although treatment success rates for DR-TB in children are higher than in adults, children and adolescents face unique hurdles during DR-TB treatment. We aimed to understand the perspectives of patients, guardians, and healthcare providers in relation to the DR-TB treatment journey for children, adolescents, and their caregivers.
METHODS
We did a qualitative study involving in-depth interviews of purposively selected adolescents (n=6; who had received more than one year of DR-TB treatment or were cured at the time of interview), patients’ guardians (for children and adolescents, n=5) and healthcare providers (n=8) for patients attending a MSF clinic in Mumbai, India. The adolescents and guardians were identified by the patient support (counsellor) team. In-depth face-to-face interviews were conducted in English or Hindi, using interview guides during September-November 2019, and audio was recorded following informed consent. Assent was obtained from adolescents (aged under 18 years), in addition to their guardians’ consent. Thematic network analysis was used to summarize textual data. ATLAS.ti, version 7, was used for analysis.
ETHICS
This study was approved by the MSF Ethics Review Board and by the Institutional Review Board, Tata Institute of Social Sciences, Mumbai, India.
RESULTS
Adolescents interviewed were aged 15-19 years, and four of them were female. Five guardians (of three child and two adolescent patients) and eight healthcare providers were interviewed, including two clinicians, two directly observed treatment providers, two counsellors, and two programme managers. Our analysis fell under the overarching theme of “challenging DR-TB treatment journey”, with four sub-themes identified. The four sub-themes covered physical trauma; emotional trauma; unavailability of social support; and poorly adapted healthcare services. Family and peer support was identified as the cornerstone for successful treatment completion. Adherence issues and treatment interruptions were more commonly reported in adolescents than children. It was also noted that treatment decisions (e.g., relating to regimen or provider) for children and adolescents relied heavily on the input of patients’ families and/or caregivers. Though the challenging experiences of patients and caregivers during DR-TB treatment varied within and between age categories, most patients and caregivers reported the experience of treatment fatigue and burnout. Participants offered recommendations for developing child/adolescent-friendly care during DR-TB treatment. These included providing injectable free regimens, palatable medications, meaningful interaction and information sharing with healthcare providers, peer-support platforms, patient-friendly counselling/adherence tools, and improved TB awareness in families, schools and communities.
CONCLUSION
TB programmes for adolescents and children must consider the patient and family as one unit when designing packages of care. Development of child- and adolescent-friendly services, such as pediatric formulations, age-specific counselling tools, and regular interaction with patients and caregivers, will help minimize burnout in patients and caregivers.
Drug-resistant TB (DR-TB) still affects around 25,000 children every year worldwide. Although treatment success rates for DR-TB in children are higher than in adults, children and adolescents face unique hurdles during DR-TB treatment. We aimed to understand the perspectives of patients, guardians, and healthcare providers in relation to the DR-TB treatment journey for children, adolescents, and their caregivers.
METHODS
We did a qualitative study involving in-depth interviews of purposively selected adolescents (n=6; who had received more than one year of DR-TB treatment or were cured at the time of interview), patients’ guardians (for children and adolescents, n=5) and healthcare providers (n=8) for patients attending a MSF clinic in Mumbai, India. The adolescents and guardians were identified by the patient support (counsellor) team. In-depth face-to-face interviews were conducted in English or Hindi, using interview guides during September-November 2019, and audio was recorded following informed consent. Assent was obtained from adolescents (aged under 18 years), in addition to their guardians’ consent. Thematic network analysis was used to summarize textual data. ATLAS.ti, version 7, was used for analysis.
ETHICS
This study was approved by the MSF Ethics Review Board and by the Institutional Review Board, Tata Institute of Social Sciences, Mumbai, India.
RESULTS
Adolescents interviewed were aged 15-19 years, and four of them were female. Five guardians (of three child and two adolescent patients) and eight healthcare providers were interviewed, including two clinicians, two directly observed treatment providers, two counsellors, and two programme managers. Our analysis fell under the overarching theme of “challenging DR-TB treatment journey”, with four sub-themes identified. The four sub-themes covered physical trauma; emotional trauma; unavailability of social support; and poorly adapted healthcare services. Family and peer support was identified as the cornerstone for successful treatment completion. Adherence issues and treatment interruptions were more commonly reported in adolescents than children. It was also noted that treatment decisions (e.g., relating to regimen or provider) for children and adolescents relied heavily on the input of patients’ families and/or caregivers. Though the challenging experiences of patients and caregivers during DR-TB treatment varied within and between age categories, most patients and caregivers reported the experience of treatment fatigue and burnout. Participants offered recommendations for developing child/adolescent-friendly care during DR-TB treatment. These included providing injectable free regimens, palatable medications, meaningful interaction and information sharing with healthcare providers, peer-support platforms, patient-friendly counselling/adherence tools, and improved TB awareness in families, schools and communities.
CONCLUSION
TB programmes for adolescents and children must consider the patient and family as one unit when designing packages of care. Development of child- and adolescent-friendly services, such as pediatric formulations, age-specific counselling tools, and regular interaction with patients and caregivers, will help minimize burnout in patients and caregivers.