Adapted Targeted Literature Review (ATLR) Methods for Robust Quantitative Survey Instrument Development: The AGAP (Abbott Global Assessment of Patients Unmet Needs) Multinational Survey Study in Chronic Liver Disease (CLD)

OBJECTIVES: An ongoing observational, multinational, direct-to-patient, cross-sectional survey study, aims to describe CLD symptoms, severity, and burden, specifically probing for fatigue occurrence and impact. Patients with CLD experience great burden and fatigue, a key symptom, is a clinical challenge due to complex interactions between physiological, neuro-psychological, and socio-behavioural processes.

Robust quantitative survey instrument (questionnaire) development is challenging and merits careful design for credible data capture and selecting valid outcome assessment measures. To do so, we conducted an aTLR applying adapted rapid review³ and qualitative evidence synthesis methods.

METHODS: A high specificity search on MEDLINE, included medical subject headings terms and free-text keywords targeted to the survey objectives with limits for language and dates. Seed publications authored by recognized experts were purposively identified and screened.

Output titles were screened in order of recency for relevancy. The first 100 titles of which 10 abstracts were included for full-text retrieval.

Study characteristics were extracted. Results and discussions sections were thematically analysed to extract codes that were synthesized into subthemes and merged into broader themes that fed a thematic framework.

RESULTS: Of 494 citations, 10 were included. 7 from MEDLINE (4 qualitative interviews, 1 quantitative survey, 2 mixed methods) and 3 seed publications (2 expert commentaries, 1 qualitative interviews). Median publication year: 2020 (2017-2023).

CLD symptomatology was described. Fatigue appeared as a “main symptom that led to health-seeking behaviours” and included fatigue types, definitions, diagnosis, differentiation, risk factors, aggravating factors, and treatments.

Personal, social, physical, psychological, and professional life subthemes were captured as humanistic burden domains.

Indirect and direct costs were described. Diagnosis and monitoring tests, treatments and health-care provider relationships were described.

Validated measures for CLD and fatigue were identified.

CONCLUSIONS: ATLR methods rapidly optimized questionnaire development. Symptomatology, humanistic and economic burdens, and management of CLD, were identified and synthesized to for robust data collection.