User-experience and patient satisfaction with quality of tuberculosis care in India: A mixed-methods literature review

BACKGROUND: Tuberculosis affected 2.7 million people in India in 2017. The Revised National TB Control Programme has achieved milestones in coverage, however quality of TB care remains highly variable and often poor, with significant gaps in provider knowledge, practices, and patients consistently lost to follow-up. These quality gaps are largely informed by studies on provider practices or objective chart abstractions and case data. Per the knowledge of the author, no review has been conducted on first-hand patient perspectives on the quality of TB care they receive. This mixed-methods literature review aims to synthesize evidence on user-experience and patient satisfaction with TB care in India and inform areas for service quality improvement. METHODS: Five medical databases, including PubMed, EMBASE, Global Health (Ovid), Web of Science, and CINAHL were searched for empirical studies on patient perspectives on TB health services published between January 1st, 2000 to December 31st, 2017. Studies in English with adult patients with any form of TB in the public or private health system were included. Studies prior to entering the health system, on distance to health facilities and cost were excluded. Seven Indian journals were hand searched and a grey literature search was conducted in GoogleScholar. Studies were assessed for methodological quality and thematic analysis was conducted by categorizing data using NVivo 12. RESULTS: A total of 498 studies were screened, of which 23 met the inclusion criteria. 16 supplementary studies were identified from Indian journals and grey literature. Of the 39 total studies included most were quantitative (29; 74%), based in South India (17; 44%) and focused on drug-sensitive TB patients (19; 49%) within the public health system (25; 64%). Data collection methods were highly heterogenous which limited synthesis and comparisons across population demographics, health sectors, or regions. Overall quantitative patient satisfaction measured in seven studies was high. Two major themes identified were provider-related factors (n = 26 studies) and convenience (n = 25), and six minor themes were supplies and equipment availability (n = 12), confidence (n = 10), information and communication (n = 10), waiting time (n = 8), stigma (n = 4), and confidentiality (n = 4). Each reported positive and negative user-experiences. Most significantly, DOTS did not fit the daily needs and obligations of many patients, particularly due to conflicts with employment and frequency of visits; while positive provider support, information, and flexibility helped patients adhere to treatment. CONCLUSION: Although quantitative patient satisfaction was found to be high, data were not collected using robust, validated tools. Qualitative and quantitative user-experiences in each theme were variable, making them both barriers and facilitators of good quality TB care. Poor user-experiences were often responsible for patients interrupting treatment or dropping out of TB care. Patient-centeredness, or user-friendliness of TB care can be improved by introducing individualized or flexible DOTS that is responsive to user circumstances and needs. User-experience data should be systematically collected using a standardized, national tool for identification of specific bottlenecks and successes in quality of TB care from the patients’ perspective.