Challenging Drug-resistant TB Treatment Journey for Children, Adolescents and Their Care-givers: A Qualitative Study

Overview

Journal PLoS One

Specialties General Medicine
Science

Date 2021 Mar 10

PMID 33690715

Citations 25

Authors

Mrinalini Das

Taanya Mathur

Shilpa Ravi

Augusto C Meneguim

Aparna Iyer

Homa Mansoor

Stobdan Kalon

Farah Naz Hossain

Shrikala Acharya

Gabriella Ferlazzo

Petros Isaakidis

Harshad P Thakur

Affiliations

Soon will be listed here.

Abstract

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.

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References

Furin J, Mafukidze A, Brigden G, du Cros P, Golin R, Harausz E . A bitter pill to swallow: the need for better medications for drug-resistant tuberculosis in children. Int J Tuberc Lung Dis. 2015; 19 Suppl 1:55-60. DOI: 10.5588/ijtld.15.0380. View

Mindu C, Lopez-Varela E, Alonso-Menendez Y, Mausse Y, Augusto O, Gondo K . Caretakers' perspectives of paediatric TB and implications for care-seeking behaviours in Southern Mozambique. PLoS One. 2017; 12(9):e0182213. PMC: 5598920. DOI: 10.1371/journal.pone.0182213. View

Chiang S, Roche S, Contreras C, Del Castillo H, Canales P, Jimenez J . Barriers to the treatment of childhood tuberculous infection and tuberculosis disease: a qualitative study. Int J Tuberc Lung Dis. 2017; 21(2):154-160. DOI: 10.5588/ijtld.16.0624. View

Galano E, Turato E, Delmas P, Cote J, Gouvea A, de Menezes Succi R . [Experiences of adolescents seropositive for HIV/AIDS: a qualitative study]. Rev Paul Pediatr. 2015; 34(2):171-7. PMC: 4917267. DOI: 10.1016/j.rpped.2015.10.004. View

Marais B . Newer Drugs for Tuberculosis Prevention and Treatment in Children. Indian J Pediatr. 2019; 86(8):725-731. DOI: 10.1007/s12098-018-02854-8. View

Franck C, Seddon J, Hesseling A, Schaaf H, Skinner D, Reynolds L . Assessing the impact of multidrug-resistant tuberculosis in children: an exploratory qualitative study. BMC Infect Dis. 2014; 14:426. PMC: 4127187. DOI: 10.1186/1471-2334-14-426. View

Das M, Mamnoon F, Mansoor H, Meneguim A, Singh P, Shah I . New TB drugs for the treatment of children and adolescents with rifampicin-resistant TB in Mumbai, India. Int J Tuberc Lung Dis. 2020; 24(12):1265-1271. DOI: 10.5588/ijtld.20.0165. View

Schaaf H . Diagnosis and Management of Multidrug-Resistant Tuberculosis in Children: A Practical Approach. Indian J Pediatr. 2019; 86(8):717-724. DOI: 10.1007/s12098-018-02846-8. View

Tong A, Sainsbury P, Craig J . Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007; 19(6):349-57. DOI: 10.1093/intqhc/mzm042. View

10.

Loveday M, Sunkari B, Master I, Daftary A, Mehlomakulu V, Hlangu S . Household context and psychosocial impact of childhood multidrug-resistant tuberculosis in KwaZulu-Natal, South Africa. Int J Tuberc Lung Dis. 2018; 22(1):40-46. DOI: 10.5588/ijtld.17.0371. View

11.

Laxmeshwar C, Stewart A, Dalal A, Kumar A, Kalaiselvi S, Das M . Beyond 'cure' and 'treatment success': quality of life of patients with multidrug-resistant tuberculosis. Int J Tuberc Lung Dis. 2019; 23(1):73-81. DOI: 10.5588/ijtld.18.0149. View

12.

Isaakidis P, Rangan S, Pradhan A, Ladomirska J, Reid T, Kielmann K . 'I cry every day': experiences of patients co-infected with HIV and multidrug-resistant tuberculosis. Trop Med Int Health. 2013; 18(9):1128-1133. DOI: 10.1111/tmi.12146. View

13.

Isaakidis P, Varghese B, Mansoor H, Cox H, Ladomirska J, Saranchuk P . Adverse events among HIV/MDR-TB co-infected patients receiving antiretroviral and second line anti-TB treatment in Mumbai, India. PLoS One. 2012; 7(7):e40781. PMC: 3394731. DOI: 10.1371/journal.pone.0040781. View

14.

Isaakidis P, Paryani R, Khan S, Mansoor H, Manglani M, Valiyakath A . Poor outcomes in a cohort of HIV-infected adolescents undergoing treatment for multidrug-resistant tuberculosis in Mumbai, India. PLoS One. 2013; 8(7):e68869. PMC: 3716893. DOI: 10.1371/journal.pone.0068869. View

15.

Isaakidis P, Casas E, Das M, Tseretopoulou X, Ntzani E, Ford N . Treatment outcomes for HIV and MDR-TB co-infected adults and children: systematic review and meta-analysis. Int J Tuberc Lung Dis. 2015; 19(8):969-78. DOI: 10.5588/ijtld.15.0123. View

16.

Jonckheree S, Furin J . Overcoming challenges in the diagnosis, prevention, and treatment of pediatric drug-resistant tuberculosis. Expert Rev Respir Med. 2017; 11(5):385-394. DOI: 10.1080/17476348.2017.1309294. View

17.

Munro S, Lewin S, Smith H, Engel M, Fretheim A, Volmink J . Patient adherence to tuberculosis treatment: a systematic review of qualitative research. PLoS Med. 2007; 4(7):e238. PMC: 1925126. DOI: 10.1371/journal.pmed.0040238. View

18.

Paz-Soldan V, Alban R, Jones C, Oberhelman R . The provision of and need for social support among adult and pediatric patients with tuberculosis in Lima, Peru: a qualitative study. BMC Health Serv Res. 2013; 13:290. PMC: 3751303. DOI: 10.1186/1472-6963-13-290. View

19.

Harausz E, Garcia-Prats A, Law S, Schaaf H, Kredo T, Seddon J . Treatment and outcomes in children with multidrug-resistant tuberculosis: A systematic review and individual patient data meta-analysis. PLoS Med. 2018; 15(7):e1002591. PMC: 6040687. DOI: 10.1371/journal.pmed.1002591. View

20.

Isaakidis P, Cox H, Varghese B, Montaldo C, Silva E, Mansoor H . Ambulatory multi-drug resistant tuberculosis treatment outcomes in a cohort of HIV-infected patients in a slum setting in Mumbai, India. PLoS One. 2011; 6(12):e28066. PMC: 3228724. DOI: 10.1371/journal.pone.0028066. View