Journal Article > ResearchFull Text
PLOS One. 2021 February 18; Volume 16 (Issue 2); e0246639.; DOI:10.1371/journal.pone.0246639
Dhakulkar S, Das M, Sutar N, Oswal V, Shah D, et al.
PLOS One. 2021 February 18; Volume 16 (Issue 2); e0246639.; DOI:10.1371/journal.pone.0246639
BACKGROUND
Childhood and adolescent drug-resistant TB (DR-TB) is one of the neglected infectious diseases. Limited evidence exists around programmatic outcomes of children and adolescents receiving DR-TB treatment. The study aimed to determine the final treatment outcomes, culture conversion rates and factors associated with unsuccessful treatment outcome in children and adolescents with DR-TB.
METHODS
This is a descriptive study including children (0-9 years) and adolescents (10-19 years) with DR-TB were who were initiated on ambulatory based treatment between January 2017-June 2018 in Shatabdi hospital, Mumbai, India where National TB elimination programme(NTEP) Mumbai collaborates with chest physicians and Médecins Sans Frontières(MSF) in providing comprehensive care to DR-TB patients. The patients with available end-of-treatment outcomes were included. The data was censored on February 2020.
RESULT
A total of 268 patients were included; 16 (6%) of them were children (0-9 years). The median(min-max) age was 17(4-19) years and 192 (72%) were females. Majority (199, 74%) had pulmonary TB. Most (58%) had MDR-TB while 42% had fluoroquinolone-resistant TB. The median(IQR) duration of treatment (n = 239) was 24(10-25) months. Median(IQR) time for culture-conversion (n = 128) was 3(3-4) months. Of 268 patients, 166(62%) had successful end-of-treatment outcomes (cured-112; completed treatment-54). Children below 10 years had higher proportion of successful treatment outcomes (94% versus 60%) compared to adolescents. Patients with undernutrition [adjusted odds-ratio, aOR (95% Confidence Interval, 95%CI): 2.5 (1.3-4.8) or those with XDR-TB [aOR (95% CI): 4.3 (1.3-13.8)] had higher likelihood of having unsuccessful DR-TB treatment outcome.
CONCLUSIONS
High proportion of successful treatment outcome was reported, better than global reports. Further, the nutritional support and routine treatment follow up should be strengthened. All oral short and long regimens including systematic use of new TB drugs (Bedaquiline and Delamanid) should be rapidly scaled up in routine TB programme, especially for the paediatric and adolescent population.
Childhood and adolescent drug-resistant TB (DR-TB) is one of the neglected infectious diseases. Limited evidence exists around programmatic outcomes of children and adolescents receiving DR-TB treatment. The study aimed to determine the final treatment outcomes, culture conversion rates and factors associated with unsuccessful treatment outcome in children and adolescents with DR-TB.
METHODS
This is a descriptive study including children (0-9 years) and adolescents (10-19 years) with DR-TB were who were initiated on ambulatory based treatment between January 2017-June 2018 in Shatabdi hospital, Mumbai, India where National TB elimination programme(NTEP) Mumbai collaborates with chest physicians and Médecins Sans Frontières(MSF) in providing comprehensive care to DR-TB patients. The patients with available end-of-treatment outcomes were included. The data was censored on February 2020.
RESULT
A total of 268 patients were included; 16 (6%) of them were children (0-9 years). The median(min-max) age was 17(4-19) years and 192 (72%) were females. Majority (199, 74%) had pulmonary TB. Most (58%) had MDR-TB while 42% had fluoroquinolone-resistant TB. The median(IQR) duration of treatment (n = 239) was 24(10-25) months. Median(IQR) time for culture-conversion (n = 128) was 3(3-4) months. Of 268 patients, 166(62%) had successful end-of-treatment outcomes (cured-112; completed treatment-54). Children below 10 years had higher proportion of successful treatment outcomes (94% versus 60%) compared to adolescents. Patients with undernutrition [adjusted odds-ratio, aOR (95% Confidence Interval, 95%CI): 2.5 (1.3-4.8) or those with XDR-TB [aOR (95% CI): 4.3 (1.3-13.8)] had higher likelihood of having unsuccessful DR-TB treatment outcome.
CONCLUSIONS
High proportion of successful treatment outcome was reported, better than global reports. Further, the nutritional support and routine treatment follow up should be strengthened. All oral short and long regimens including systematic use of new TB drugs (Bedaquiline and Delamanid) should be rapidly scaled up in routine TB programme, especially for the paediatric and adolescent population.
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
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.
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.
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
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 > ResearchFull Text
Int J Tuberc Lung Dis. 2020 December 1; Volume 24; DOI:10.5588/ijtld.20.0165
Das M, Mamnoon F, Mansoor H, Meneguim A, Singh P, et al.
Int J Tuberc Lung Dis. 2020 December 1; Volume 24; DOI:10.5588/ijtld.20.0165
SETTING: Médecins Sans Frontières (MSF) clinic in Mumbai, India.
OBJECTIVE: To determine the final treatment outcomes, culture conversion and adverse events (AEs) during treatment among children and adolescents (0–19 years) with rifampicin-resistant tuberculosis (RR-TB) who received ambulatory injectable-free treatment, including bedaquiline (BDQ) and/or delamanid (DLM) during September 2014–January 2020.
DESIGN: This was a retrospective cohort study based on review of routinely collected programme data.
RESULTS: Twenty-four patients were included; the median age was 15.5 years (min-max 3–19) and 15 (63%) were females. None were HIV-coinfected. All had fluoroquinolone resistance. Twelve received treatment, including BDQ and DLM, 11 received DLM and one BDQ. The median exposure to BDQ (n = 13) and DLM (n = 23) was 82 (IQR 80–93) and 82 (IQR 77–96) weeks, respectively. Seventeen (94%) patients with positive culture at baseline (n = 18) had negative culture during treatment; median time for culture-conversion was 7 weeks (IQR 5–11). Twenty-three (96%) had successful treatment outcomes: cured (n = 16) or completed treatment (n = 7); one died. Eleven (46%) had 17 episodes of AEs. Two of 12 serious AEs were associated with new drugs (QTcF >500 ms).
CONCLUSION: Based on one of the largest global cohorts of children and adolescents to receive new TB drugs, this study has shown that injectable-free regimens containing BDQ and/or DLM on ambulatory basis were effective and well-tolerated among children and adolescents and should be made routinely accessible to these vulnerable groups.
OBJECTIVE: To determine the final treatment outcomes, culture conversion and adverse events (AEs) during treatment among children and adolescents (0–19 years) with rifampicin-resistant tuberculosis (RR-TB) who received ambulatory injectable-free treatment, including bedaquiline (BDQ) and/or delamanid (DLM) during September 2014–January 2020.
DESIGN: This was a retrospective cohort study based on review of routinely collected programme data.
RESULTS: Twenty-four patients were included; the median age was 15.5 years (min-max 3–19) and 15 (63%) were females. None were HIV-coinfected. All had fluoroquinolone resistance. Twelve received treatment, including BDQ and DLM, 11 received DLM and one BDQ. The median exposure to BDQ (n = 13) and DLM (n = 23) was 82 (IQR 80–93) and 82 (IQR 77–96) weeks, respectively. Seventeen (94%) patients with positive culture at baseline (n = 18) had negative culture during treatment; median time for culture-conversion was 7 weeks (IQR 5–11). Twenty-three (96%) had successful treatment outcomes: cured (n = 16) or completed treatment (n = 7); one died. Eleven (46%) had 17 episodes of AEs. Two of 12 serious AEs were associated with new drugs (QTcF >500 ms).
CONCLUSION: Based on one of the largest global cohorts of children and adolescents to receive new TB drugs, this study has shown that injectable-free regimens containing BDQ and/or DLM on ambulatory basis were effective and well-tolerated among children and adolescents and should be made routinely accessible to these vulnerable groups.
Conference Material > Abstract
Mahbub T, Mathur T, Holmgren J, Ravi S, Das M, et al.
MSF Scientific Days International 2021: Innovation. 2021 May 20
WHAT CHALLENGE OR OPPORTUNITY DID YOU TRY TO ADDRESS? WERE EXISTING SOLUTIONS NOT AVAILABLE OR NOT GOOD ENOUGH?
Individuals with multidrug resistant tuberculosis (MDR-TB) undergo one to three years of treatment and face intense stigma.
WHY DOES THIS CHALLENGE OR OPPORTUNITY MATTER – WHY SHOULD MSF ADDRESS IT?
We used a Photovoice intervention among patients with MDR-TB to explore their lived experiences of stigma and to gauge the efficacy of Photovoice as a tool to engage individuals to speak about it.
DESCRIBE YOUR INNOVATION AND WHAT MAKES IT INNOVATIVE
Photovoice is a visual method requiring participants to use photography to voice, identify, represent, and reflect on their lived experiences. Compared to other interventions, Photovoice provides an innovative & interesting platform for sharing experiences and adds an extra aid for describing experiences.
WHO WILL BENEFIT (WHOSE LIFE/WORK WILL IT IMPROVE?) AND WERE THEY INVOLVED IN THE DESIGN?
This innovation is aimed at helping patients and healthcare providers understand the stigma around MDR-TB. The participants provided input during the study implementation process.
WHAT OBJECTIVES DID YOU SET FOR THE PROJECT – WHAT DID YOU WANT TO ACHIEVE AND HOW DID YOU DEFINE AND MEASURE SUCCESS (IMPROVED SERVICE, LOWER COST, BETTER EFFICIENCY, BETTER USER EXPERIENCE, ETC.)?
This study utilised participatory methods to understand and address stigmatisation associated with MDR-TB at a specialised TB clinic in Mumbaii, India.
WHAT DATA DID YOU COLLECT TO MEASURE THE INNOVATION AGAINST THESE INDICATORS AND HOW DID YOU COLLECT IT? INCLUDE IF YOU DECIDED TO CHANGE THE INDICATORS AND WHY
Nine female patients were recruited from the MSF clinic in Govandi, Mumbai, between September and October 2020. Males were unwilling to join. Following orientation, we met with participants to understand their motivation and commitment to the project. Consent was taken and camera training was provided.
Participants were asked to take four photos of moments, issues, subjects, artifacts, stills, people (unidentifiable), or anything else that represented a form of stigma that they had personally experienced over two weeks. In addition, each participant attended three focus groups facilitated by the MSF clinic, during which 37 non-identifying images and 15 hours of narratives were collected. Participants were also required to attend one dissemination session.
HOW DID YOU ANALYSE THIS DATA TO UNDERSTAND TO WHAT EXTENT THE INNOVATION ACHIEVED ITS OBJECTIVES? DID THIS INCLUDE A COMPARISON TO THE STATUS QUO OR AN EXISTING SOLUTION?
The photos were analysed thematically during the focus group discussions with the participants. The focus group transcripts were coded and analysed thematically.
WERE THERE ANY LIMITATIONS TO THE DATA YOU COLLECTED, HOW YOU COLLECTED IT OR HOW YOU ANALYSED IT, OR WERE THERE ANY UNFORESEEN FACTORS THAT MAY HAVE INTERFERED WITH YOUR RESULTS?
There was no male representation in this Photovoice project. Reasons provided by males for non-participation were primarily around the time commitment, however we suspect that it may also have been due to discomfort when discussing topics such as stigma.
WHAT RESULTS DID YOU GET?
Results revealed that patients with MDR-TB face life altering stigma. Loss (of self, voice, mobility) was the predominant theme, in addition to abuse (mental and social), which caused distress such as shame, isolation, suffocation, and feelings of peril. Education (general or disease-related) did not correlate with non-stigmatising and compassionate behaviour from stakeholders. Married women reported stigmatisation from family members exacerbated by pre-existing power dynamics. Coping mechanisms, which started at diagnosis, included peer/family support, self-motivation, and resilience.
COMPARING THE RESULTS FROM YOUR DATA ANALYSIS TO YOUR OBJECTIVES, EXPLAIN WHY YOU CONSIDER YOUR INNOVATION A SUCCESS OR FAILURE?
Focus groups provided a safe space for participants to voice their feelings. Each and every photo gave the participants a chance to reflect on their own situation and that of others in the group.
TO WHAT EXTENT DID THE INNOVATION BENEFIT PEOPLE’S LIVES / WORK?
Photo-sharing often led to in-depth conversations about shared experiences of stigma among the participants.
IS THERE ANYTHING THAT YOU WOULD DO DIFFERENTLY IF YOU WERE TO DO THE WORK AGAIN?
Gender-specific orientation and focus group sessions may improve male participation. The study will need to be flexible with the time commitment required from the participants. Topics other than stigma can be explored using the Photovoice intervention, for example social difficulties related to TB treatment.
WHAT ARE THE NEXT STEPS FOR THE INNOVATION ITSELF (SCALE UP, IMPLEMENTATION, FURTHER DEVELOPMENT, DISCONTINUED)?
The results of this innovation have been used to improve the MSF counselling package including tools for routine implementation.
IS THE INNOVATION TRANSFERABLE OR ADAPTABLE TO OTHER SETTINGS OR DOMAINS?
The Photovoice intervention can be used in other settings to better understand patient perceptions.
WHAT BROADER IMPLICATIONS ARE THERE FROM THE INNOVATION FOR MSF AND / OR OTHERS (CHANGE IN PRACTICE, CHANGE IN POLICY, CHANGE IN GUIDELINES, PARADIGM SHIFT)?
Photovoice helped participants connect and gave them focus and motivation to be part of a larger cause. Photovoice can be a vehicle for instances of joy, ownership, and creativity to strengthen patient voices for advocacy.
WHAT OTHER LEARNINGS FROM YOUR WORK ARE IMPORTANT TO SHARE?
Improved support and attitude changes from family members and health care workers are needed to curb stigma. Patients were encouraged to provide suggestions and recommendations to reduce stigma and were included content planning.
ETHICS
This study was approved by the MSF Ethics Review Board
(ERB) and the Ethics committee of the Foundation for Medical Research, Mumbai, India.
Individuals with multidrug resistant tuberculosis (MDR-TB) undergo one to three years of treatment and face intense stigma.
WHY DOES THIS CHALLENGE OR OPPORTUNITY MATTER – WHY SHOULD MSF ADDRESS IT?
We used a Photovoice intervention among patients with MDR-TB to explore their lived experiences of stigma and to gauge the efficacy of Photovoice as a tool to engage individuals to speak about it.
DESCRIBE YOUR INNOVATION AND WHAT MAKES IT INNOVATIVE
Photovoice is a visual method requiring participants to use photography to voice, identify, represent, and reflect on their lived experiences. Compared to other interventions, Photovoice provides an innovative & interesting platform for sharing experiences and adds an extra aid for describing experiences.
WHO WILL BENEFIT (WHOSE LIFE/WORK WILL IT IMPROVE?) AND WERE THEY INVOLVED IN THE DESIGN?
This innovation is aimed at helping patients and healthcare providers understand the stigma around MDR-TB. The participants provided input during the study implementation process.
WHAT OBJECTIVES DID YOU SET FOR THE PROJECT – WHAT DID YOU WANT TO ACHIEVE AND HOW DID YOU DEFINE AND MEASURE SUCCESS (IMPROVED SERVICE, LOWER COST, BETTER EFFICIENCY, BETTER USER EXPERIENCE, ETC.)?
This study utilised participatory methods to understand and address stigmatisation associated with MDR-TB at a specialised TB clinic in Mumbaii, India.
WHAT DATA DID YOU COLLECT TO MEASURE THE INNOVATION AGAINST THESE INDICATORS AND HOW DID YOU COLLECT IT? INCLUDE IF YOU DECIDED TO CHANGE THE INDICATORS AND WHY
Nine female patients were recruited from the MSF clinic in Govandi, Mumbai, between September and October 2020. Males were unwilling to join. Following orientation, we met with participants to understand their motivation and commitment to the project. Consent was taken and camera training was provided.
Participants were asked to take four photos of moments, issues, subjects, artifacts, stills, people (unidentifiable), or anything else that represented a form of stigma that they had personally experienced over two weeks. In addition, each participant attended three focus groups facilitated by the MSF clinic, during which 37 non-identifying images and 15 hours of narratives were collected. Participants were also required to attend one dissemination session.
HOW DID YOU ANALYSE THIS DATA TO UNDERSTAND TO WHAT EXTENT THE INNOVATION ACHIEVED ITS OBJECTIVES? DID THIS INCLUDE A COMPARISON TO THE STATUS QUO OR AN EXISTING SOLUTION?
The photos were analysed thematically during the focus group discussions with the participants. The focus group transcripts were coded and analysed thematically.
WERE THERE ANY LIMITATIONS TO THE DATA YOU COLLECTED, HOW YOU COLLECTED IT OR HOW YOU ANALYSED IT, OR WERE THERE ANY UNFORESEEN FACTORS THAT MAY HAVE INTERFERED WITH YOUR RESULTS?
There was no male representation in this Photovoice project. Reasons provided by males for non-participation were primarily around the time commitment, however we suspect that it may also have been due to discomfort when discussing topics such as stigma.
WHAT RESULTS DID YOU GET?
Results revealed that patients with MDR-TB face life altering stigma. Loss (of self, voice, mobility) was the predominant theme, in addition to abuse (mental and social), which caused distress such as shame, isolation, suffocation, and feelings of peril. Education (general or disease-related) did not correlate with non-stigmatising and compassionate behaviour from stakeholders. Married women reported stigmatisation from family members exacerbated by pre-existing power dynamics. Coping mechanisms, which started at diagnosis, included peer/family support, self-motivation, and resilience.
COMPARING THE RESULTS FROM YOUR DATA ANALYSIS TO YOUR OBJECTIVES, EXPLAIN WHY YOU CONSIDER YOUR INNOVATION A SUCCESS OR FAILURE?
Focus groups provided a safe space for participants to voice their feelings. Each and every photo gave the participants a chance to reflect on their own situation and that of others in the group.
TO WHAT EXTENT DID THE INNOVATION BENEFIT PEOPLE’S LIVES / WORK?
Photo-sharing often led to in-depth conversations about shared experiences of stigma among the participants.
IS THERE ANYTHING THAT YOU WOULD DO DIFFERENTLY IF YOU WERE TO DO THE WORK AGAIN?
Gender-specific orientation and focus group sessions may improve male participation. The study will need to be flexible with the time commitment required from the participants. Topics other than stigma can be explored using the Photovoice intervention, for example social difficulties related to TB treatment.
WHAT ARE THE NEXT STEPS FOR THE INNOVATION ITSELF (SCALE UP, IMPLEMENTATION, FURTHER DEVELOPMENT, DISCONTINUED)?
The results of this innovation have been used to improve the MSF counselling package including tools for routine implementation.
IS THE INNOVATION TRANSFERABLE OR ADAPTABLE TO OTHER SETTINGS OR DOMAINS?
The Photovoice intervention can be used in other settings to better understand patient perceptions.
WHAT BROADER IMPLICATIONS ARE THERE FROM THE INNOVATION FOR MSF AND / OR OTHERS (CHANGE IN PRACTICE, CHANGE IN POLICY, CHANGE IN GUIDELINES, PARADIGM SHIFT)?
Photovoice helped participants connect and gave them focus and motivation to be part of a larger cause. Photovoice can be a vehicle for instances of joy, ownership, and creativity to strengthen patient voices for advocacy.
WHAT OTHER LEARNINGS FROM YOUR WORK ARE IMPORTANT TO SHARE?
Improved support and attitude changes from family members and health care workers are needed to curb stigma. Patients were encouraged to provide suggestions and recommendations to reduce stigma and were included content planning.
ETHICS
This study was approved by the MSF Ethics Review Board
(ERB) and the Ethics committee of the Foundation for Medical Research, Mumbai, India.
Conference Material > Slide Presentation
Mahbub T, Mathur T, Holmgren J, Ravi S, Das M, et al.
MSF Scientific Days International 2021: Innovation. 2021 May 20