Bridging Cultures in Fatigue Assessment: Cross-Cultural Translation and Validation of the Fatigue Impact and Severity Self-Assessment and it’s use with Adolescents and Young Adults in India.

Background: The Fatigue Impact and Severity Self-Assessment (FISSA) is a tool designed and validated to assess fatigue in individuals with cerebral palsy (CP). Fatigue, pain, and sleep disturbances are prevalent issues for those with CP, and these secondary impairments may vary across cultures and socio-economic contexts. Objective: This dissertation aims to establish age-related normative values for the FISSA based on a large Canadian population, adapt and validate the FISSA for the Hindi language, and assess the prevalence of fatigue, pain, and sleep issues in adolescents and young adults with CP within the Indian population. Methods: Three studies were conducted: 1. A cross-sectional online survey involving 725 healthy Canadian participants aged 10 to 80 was conducted to establish normative values for age- and gender-specific cohorts. Participants completed the FISSA and the PROMIS-49 fatigue profile. 2. The FISSA was translated and adapted into Hindi (FISSA-H) and evaluated for psychometric properties among 100 participants aged 10 to 30 with CP in India, using a cross-sectional design. Participants completed the FISSA-H and a pain rating scale from the British Society, with a second assessment after 14 days to evaluate test-retest reliability. 3. A cross-sectional survey study involving 207 adolescents and adults with CP in India was conducted to evaluate the prevalence of fatigue, pain, and sleep issues. Participants completed the FISSA-H, the Hindi version of the Pain Rating Scale, and the Childhood and Adolescent Sleep Evaluation Questionnaire (Hindi Version). Results: Canadian Normative Data: Women generally experienced lower fatigue levels than men, with fatigue decreasing with age in women but higher in men aged 10-20 and 61-80. The PROMIS-49 fatigue profile and the FISSA had a moderately strong positive correlation (ρ = .681), indicating good concurrent validity. -H Validation: The FISSA-H showed robust content validity, excellent internal consistency (Cronbach’s alpha = 0.96), and exceptional test-retest reliability (ICC (3,1) = 0.93). Indian Prevalence Study: The prevalence of fatigue, pain, and sleep issues was 52%, 88%, and 69%, respectively, with 38% experiencing all three problems simultaneously. Conclusion: This comprehensive dissertation provides age- and gender-specific normative data for the FISSA from the Canadian general population, validates the FISSA-H as a reliable instrument for assessing fatigue in Hindi-speaking individuals with CP, and highlights the high prevalence of fatigue, pain, and sleep issues among adolescents and adults with CP in India.