Review question/objective

The aim of this review is to synthesize the best available evidence on the illness and treatment experiences of adult patients living with human-immunodeficiency virus/tuberculosis (HIV/TB) co-infection in all contexts.

Specific objectives are:

1. To identify how patients respond to and cope with living with HIV/TB co-infection.

2. To explore HIV/TB co-infected patients' experiences of treatment burden and treatment adherence.

3. To explore HIV/TB co-infected patients' experiences of healthcare services and health providers.

Background

Currently, TB is one of the leading causes of death amongst people living with HIV.1 Due to a compromised immune system, HIV-positive individuals are almost 37 times more likely to develop TB as compared with HIV-negative individuals.1

Continued high global prevalence levels of TB create an ongoing challenge for its prevention and management in people with HIV. According to the World Health Organization (WHO),1 there were nine million new cases of TB worldwide in 2013. Of this total, 59%, 26%, 7%, 5% and 3% were in Asia, Africa, the Mediterranean region, Europe and the Americas respectively.1

Current research suggests that approximately 10% of new cases of TB occur annually in individuals who are also HIV positive. Indeed, TB is thought to be responsible for 25% of deaths in individuals living with HIV. Due to its high HIV burden, the sub-Saharan African region accounts for about 75% of all cases of HIV/TB co-infection and has the highest associated mortality rates.1,2

The Joint United Nations Program on HIV/AIDS (UNAIDS) and the Stop TB Partnership have signed a new agreement to accelerate action to achieve a 2015 goal of reducing deaths from TB among people living with HIV by 50%. The world has made substantial gains towards this goal.3 Since 2004, tuberculosis-related deaths among people living with HIV have declined by 36% worldwide (slightly less in Africa). However, progress in reducing deaths is levelling off. Hence countries need to step up their efforts to manage these dual public health problems.2,4

In terms of prevention of TB in HIV infected individuals, WHO's key strategy has been termed the Three "Is": Intensified case finding, Isoniazid preventive therapy and enhanced Infection control in clinical settings.1 To help those already co-infected, key health system actions are to facilitate adherence to treatment, undertake patient education, improve patients' socio-economic conditions and engage communities and health professionals in the treatment and support process.5

In terms of treatment of HIV/TB co-infection, recommendations are for concurrent treatment for TB and HIV, regardless of the stage of either disease. Treatment for TB among people living with HIV is considered a priority and should start as soon as the disease is diagnosed, and while waiting for the results of drug susceptibility tests. Rapid treatment of tuberculosis reduces mortality related to this disease, as well as interrupting onward transmission.6,7

The standard TB treatment consists of a regimen comprising combinations of four to five anti-tuberculosis drugs: isoniazid, rifampicin, pynaziramide, pthambutol or standard alternative treatments where isoniazid is replaced by rifabutin (these are used during the intensive phase; in the maintenance phase fewer drugs are used). Likewise, treatment with antiretroviral therapy (ART) also includes various combinations of drugs. Patients living with HIV/TB co-infection therefore carry a higher treatment burden than those with HIV or TB alone.3 Several studies report that co-infection with HIV/TB presents significant adherence problems, yet adherence to treatment is vital to success.8,9

In terms of the social context of HIV/TB co-infection, both diseases (individually) are associated with considerable social stigma and secrecy.10 Some studies suggest that individuals with HIV/TB therefore face a double burden of stigma and may thus experience particular problems with seeking and receiving the social, medical and professional support that may be required.11,12

A search of the Cochrane Library, Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Prospero, Medline and CINAHL databases identified several systematic reviews exploring the illness and treatment experiences of individuals with TB13-15 or with HIV16-18 alone but none on HIV/TB co-infection. Although the nature of and treatment for HIV and TB are very different, the existing reviews identify some common factors that may influence the patient experience.13-18

The reviews suggest that coping with HIV or TB (including adhering to treatment) is influenced by a complex range of inter-linked factors operating at multiple levels.13,15-18 Physical factors include enduring unpleasant side effects and high pill burden, and coping with illness-related symptoms, all of which impact on an individual's ability to carry out activities of daily living (including work).13,14 Socio-economic and demographic factors also impact on the illness and treatment experience and on the opportunities available for support (e.g. age, marital status, gender, family situation and financial circumstances).15,16 Likewise, treatment itself may have social as well as physical impacts (such as when patients are advised not to drink alcohol). Cultural factors are also highly significant as stigma and shame can prevent patients from seeking (or receiving) support from family or friends.17 In particular, stigma may prevent patients from disclosing their condition to sexual partners or family members, thereby contributing to onward transmission.14,16 Personal issues include coming to terms with a changed identity, and ability to cope is strongly linked to an individual's motivation, self-efficacy, resilience and mental health status - all of which in turn are strongly linked to social, family and cultural contexts.13-15,18 Finally, health service factors are known to influence the patient experience, such as accessibility and availability of services and the attitude of health care providers.15

Development of good care pathways and processes relies on a good understanding of the patient experience. Whilst the review findings reported above illuminate different aspects of the illness/treatment experience of HIV or TB, they have approached the two illnesses as distinct phenomena. It is currently unclear how the experience of those co-infected with HIV/TB would be similar or different, and, therefore, how patients' needs may be different or how healthcare practices for co-infected individuals may need to be adjusted. To our knowledge, there have been no systematic reviews that have synthesized the illness or treatment experiences of those living with HIV/TB co-infection. Given the numbers of those co-infected, this is an important gap in the evidence and one that the current review seeks to fill.

Inclusion criteria

Types of participants

This review will include papers that report the experiences of adults (above 18 years) with an HIV/TB co-infection diagnosis (at any stage of their illness or treatment).

Phenomena of interest

The illness and treatment experiences of people living with HIV/TB co-infection.

Context

The review will include studies from any geographical, cultural, community or healthcare context.

Types of studies

The review will include studies that include, but are not limited to, qualitative designs such as phenomenology, grounded theory, ethnography and action research. We will include mixed methods papers only where the qualitative results are reported separately.

Search strategy

The search strategy will aim to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of the text words contained in the title and abstract, and of the index terms used to describe the articles. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies.

The databases to be searched include: CINAHL, Medline, ASSIA, PsycINFO, Web of Science, Embase. The first author is from Brazil and speaks Spanish and Portuguese. Hence, the literature search will also include Scielo, a Latin American database. The review will include papers published in three languages (English, Portuguese and Spanish). The search for unpublished studies will include reports from World Health Organization (WHO) United Nations (UN) and Joint United Nations Programme on HIV/AIDS (UNAIDS), Stop TB Partnership. Hand searching will be carried out from Google web and Google scholar databases.

The literature search will be limited to studies published from the year 2000 onwards, because this is when antiretroviral treatment for HIV became widely available, and the entire treatment process and prognosis for HIV altered dramatically (thereby altering the patient experience).19

Initial keywords to be used are listed in Table 1 below. These keywords will be used alone or combined with the others in the Boolean system. Where necessary, a translation into English, Portuguese and Spanish will be made to meet the specificities of each database.

Assessment of methodological quality

Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.

If eligibility is not clear from the information provided in the paper, efforts will be made to seek clarification by contacting the authors.

Data extraction

Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods, contexts and outcomes of significance to the review questions and specific objectives. In terms of the information about the sample, the reviewers will seek to include information on the clinical stage of TB and HIV and on the phase of treatment (if any) currently being implemented. One reviewer (the primary reviewer) will extract the data and thereafter will discuss with the second reviewer. As above, authors of papers will be contacted if there are any issues that require clarification during data extraction.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings (Level 1 findings) rated according to their quality, and categorizing these findings on the basis of similarity in meaning (Level 2 findings). These categories will then be subjected to a meta-aggregation in order to produce a single comprehensive set of aggregated findings (Level 3 findings) that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form. A pilot will be undertaken by the review team, using with at least two studies, in order to allow them to be clear on how they will assign findings to categories and how the categories will be aggregated into synthesized findings.20

Conflicts of interest

The reviewers declare no conflict of interest.

Acknowledgements

This protocol was funded by Foundation for Research of the State of Sao Paulo (FAPESP).

References