Browsing by Person "Stagg, Helen R."
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Item All non-adherence is equal, but is some more equal than others? TB in the digital era(European Respiratory Society, 2020-11-02) Stagg, Helen R.; Flook, Mary; Martinecz, Antal; Kielmann, Karina; Abel Zur Wiesch, Pia; Karat, Aaron S.; Lipman, Marc; Sloan, Derek J.; Walker, Elizabeth F.; Fielding, Katherine L.Adherence to treatment for tuberculosis (TB) has been a concern for many decades, resulting in the World Health Organization’s recommendation of the direct observation of treatment in the 1990s. Recent advances in digital adherence technologies (DATs) have renewed discussion on how to best address non-adherence, as well as offering important information on dose-by-dose adherence patterns and their variability between countries and settings. Previous studies have largely focussed on percentage thresholds to delineate sufficient adherence, but this is misleading and limited, given the complex and dynamic nature of adherence over the treatment course. Instead, we apply a standardised taxonomy- as adopted by the international adherence community- to dose-by-dose medication-taking data, which divides missed doses into a) late/non-initiation (starting treatment later than expected/not starting), b) discontinuation (ending treatment early), and c) suboptimal implementation (intermittent missed doses). Using this taxonomy, we can consider the implications of different forms of non-adherence for intervention and regimen design. For example, can treatment regimens be adapted to increase the ‘forgiveness’ of common patterns of suboptimal implementation to protect against treatment failure and the development of drug resistance? Is it reasonable to treat all missed doses of treatment as equally problematic and equally common when deploying DATs? Can DAT data be used to indicate the patients that need enhanced levels of support during their treatment course? Critically, we pinpoint key areas where knowledge regarding treatment adherence is sparse and impeding scientific progress.Item Determinants of non-adherence to anti-TB treatment in high income, low TB incidence settings: A scoping review(The Union, 2021-06-01) Jones, Annie; Bidad, Natalie; Horne, Rob; Stagg, Helen R.; Wurie, Fatima; Kielmann, Karina; Karat, Aaron S.; Kunst, Heinke; Campbell, Colin N. J.; Darvell, Marcia; Clarke, Amy Louise; Lipman, MarcBackground Improving adherence to anti-tuberculosis (TB) treatment is a public health priority in high income, low incidence (HILI) regions. We conducted a scoping review to identify reported determinants of non-adherence in HILI settings.Item Development and description of a theory-driven, evidence-based, complex intervention to improve adherence to treatment for tuberculosis in the UK: the IMPACT study(Informa UK Limited, 2023-11-27) Jones, Annie S. K.; Horne, Rob; White, Jacqui; Costello, Trish; Darvell, Marcia; Karat, Aaron S.; Kielmann, Karina; Stagg, Helen R.; Hill, Adam T.; Kunst, Heinke; Campbell, Colin N. J.; Lipman, Marc C. I.Background Tuberculosis (TB) has a significant treatment burden for patients, requiring at least six months of anti-TB treatment (ATT) with multiple medicines. Ensuring good adherence to ATT is central to global TB strategies, including those in high-income, low-TB incidence (HILI) settings. For adherence interventions to be successful and deliverable, they need to address the personal and environmental factors influencing patient and provider behaviour. Purpose This paper describes the application of theory and research evidence to inform the design process of the IMPACT manualised intervention to support ATT adherence for adults with TB disease in the United Kingdom (UK). It also provides a full description of the resulting intervention. Methods We synthesised findings from our formative research (qualitative and quantitative scoping reviews and patient and carer interviews) and supplemented these with clinic observations, a literature review, and healthcare provider interviews. Findings were mapped to the guiding theoretical framework (Perceptions and Practicalities Approach) which was operationalised to design the intervention components and content. An Intervention Development Group (IDG) of relevant stakeholders were consulted to adapt the intervention to local clinical settings. Results The pragmatic, deliverable components and content for the IMPACT intervention included: (1) an enhanced, structured, risk assessment to systematically identify risk factors for non-adherence plus locally-adapted guidance to mitigate these; and (2) patient educational materials (an animated video and interactive patient booklet) about TB and its treatment, to communicate the need for treatment and address common concerns. Conclusions Using a theory– and evidence– based approach incorporating stakeholder input, we have developed a multi-component, pragmatic, manualised intervention, which addresses patients’ personal barriers to adherence within local service resources to improve adherence to ATT within UK TB services.Item IMPACT study on intervening with a manualised package to achieve treatment adherence in people with tuberculosis: Protocol paper for a mixed-methods study, including a pilot randomised controlled trial(BMJ, 2019-12-17) Stagg, Helen R.; Abubakar, Ibrahim; Campbell, Colin N. J.; Copas, Andrew; Darvell, Marcia; Horne, Robert; Kielmann, Karina; Kunst, Heinke; Mandelbaum, Mike; Pickett, Elisha; Story, Alistair; Vidal, Nicole L.; Wurie, Fatima; Lipman, MarcIntroduction Compared with the rest of the UK and Western Europe, England has high rates of the infectious disease tuberculosis (TB). TB is curable, although treatment is for at least 6 months and longer when disease is drug resistant. If patients miss too many doses (non-adherence), they may transmit infection for longer and the infecting bacteria may develop resistance to the standard drugs used for treatment. Non-adherence may therefore risk both their health and that of others. Within England, certain population groups are thought to be at higher risk of non-adherence, but the factors contributing to this have been insufficiently determined, as have the best interventions to promote adherence. The objective of this study was to develop a manualised package of interventions for use as part of routine care within National Health Services to address the social and cultural factors that lead to poor adherence to treatment for TB disease.Item Relational dynamics of treatment behavior among individuals with tuberculosis in high-income countries: A scoping review(Dove Press, 2021-09-21) Arakelyan, Stella; Karat, Aaron S.; Jones, Annie S. K.; Vidal, Nicole L.; Stagg, Helen R.; Darvell, Marcia; Horne, Rob; Lipman, Marc C. I.; Kielmann, KarinaAlthough tuberculosis (TB) incidence has significantly declined in high-income, low-incidence (HILI) countries, challenges remain in managing TB in vulnerable populations who may struggle to stay on anti-TB treatment (ATT). Factors associated with non-adherence to ATT are well-documented; however, adherence is often narrowly conceived as a fixed binary variable that places emphasis on individual agency and the act of taking medicines, rather than on the demands of being on treatment more broadly. Further, the mechanisms through which documented factors act upon the experience of ‘being on treatment’ are poorly understood. Adopting a relational approach that emphasizes the embeddedness of individuals within dynamic social, structural, and systems contexts, this scoping review aims to synthesize qualitative evidence on experiences of being on ATT and mechanisms through which socio-ecological factors influence adherence in HILI countries. Six electronic databases were searched for peer-reviewed literature published in English between January 1990 and May 2020. Additional studies were obtained by searching references and citations of included studies. Narrative synthesis was used to analyze qualitative data extracted from included studies. Of 28 included studies, the majority (86%) reported on health systems factors, followed by personal characteristics (82%), structural influences (61%), social factors (57%), and treatment-related factors (50%). Included studies highlighted three points that underpin a relational approach to ATT behavior: (1) individual motivation and capacity to take ATT is dynamic and intertwined with, rather than separate from, social, health systems, and structural factors; (2) individuals’ pre-existing experiences of health-seeking influenced their views on treatment and their ability to commit to long-term regular medicine-taking; and (3) social, cultural, and political contexts play an important role in mediating how specific factors work to support or hinder ATT adherence behavior in different settings. Based on our analysis, we suggest that person-centered clinical management of tuberculosis should (a) acknowledge the ways in which ATT both disrupts and is managed within the everyday lives of individuals with TB; (b) appreciate that circumstances and the support and resources that individuals can access may change over the course of treatment; and (c) display sensitivity towards context-specific social and cultural norms affecting individual and collective experiences of being on ATT.Item “You have to change your whole life”: A qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom(Elsevier, 2021-03-29) Karat, Aaron S.; Jones, Annie S. K.; Abubakar, Ibrahim; Campbell, Colin N. J.; Clarke, Amy L.; Clarke, Caroline S.; Darvell, Marcia; Hill, Adam T.; Horne, Robert; Kunst, Heinke; Mandelbaum, Mike; Marshall, Ben G.; McSparron, Ceri; Rahman, Ananna; Stagg, Helen R.; White, Jacqui; Lipman, Marc C. I.; Kielmann, KarinaMaintaining adherence to treatment for tuberculosis (TB) is essential if the disease is to be eliminated. As part of formative research to develop an intervention to improve adherence, we documented the lived experiences of adults receiving anti-TB treatment (ATT) in three UK cities and examined how personal, social, and structural circumstances interacted to impact on individuals’ adherence to treatment. Using a topic guide that explored social circumstances and experiences of TB care, we conducted in-depth interviews with 18 adults (six women) who were being or had been treated for TB (patients) and four adults (all women) who were caring for a friend, relative, or partner being treated for TB (caregivers). We analysed transcripts using an adapted framework method that classified factors affecting adherence as personal, social, structural, health systems, or treatment-related. Eleven of 18 patients were born outside the UK (in South, Central, and East Asia, and Eastern and Southern Africa); among the seven who were UK-born, four were Black, Asian, or Minority Ethnic and three were White British. TB and its treatment were often disruptive: in addition to debilitating symptoms and side effects of ATT, participants faced job insecurity, unstable housing, stigma, social isolation, worsening mental health, and damaged relationships. Those who had a strong support network, stable employment, a routine that could easily be adapted, a trusting relationship with their TB team, and clear understanding of the need for treatment reported finding it easier to adhere to ATT. Changes in circumstances sometimes had dramatic effects on an individual’s ability to take ATT; participants described how the impact of certain acute events (e.g., the onset of side effects or fatigue, episodes of stigmatisation, loss of income) were amplified by their timing or through their interaction with other elements of the individual’s life. We suggest that the dynamic and fluctuating nature of these factors necessitates comprehensive and regular review of needs and potential problems, conducted before and during ATT; this, coupled with supportive measures that consider (and seek to mitigate) the influence of social and structural factors, may help improve adherence.