Measuring mental wellness among adolescents living with a physical chronic condition: a systematic review of the mental health and mental well-being instruments

BACKGROUND: Globally, promoting mental health and well-being among adolescents has become a public health priority, especially for adolescents living with a physical chronic condition (CC), as research suggests they may be more at risk of developing mental health co-morbidities. Valid and reliable instruments are needed to measure and better understand mental health and mental well-being among adolescents living with a CC. To this end, we reviewed studies reporting on mental health and well-being instruments used in adolescent populations living with a chronic physical condition/disease globally. METHODS: We used a systematic review method guided by PRISMA to identify assess mental health and mental well-being instruments used in adolescents living with a CC. In this instance, mental health instruments were defined as those representing negative domains of mental health (i.e. depression and anxiety) while mental well-being instruments included positive aspects of mental health (i.e. self-concept and resilience). RESULTS: We identified 22 articles, which included 31 instruments that were used to measure either mental health (n = 8) or mental well-being (n = 15) or both (n = 8) in adolescents living with a CC. Of these, thirteen studies used a Health-Related Quality of Life (HRQoL) scale to measure mental health and/or mental well-being. The KIDSCREEN questionnaires and the Strengths and Difficulties Questionnaire were identified as being frequently used across the 22 studies. Additionally, 7 out of the 31 instruments were disease specific, with 3 focusing on adolescents with diabetes. All the instruments were developed in high income countries and adapted for use in lower- and middle-income countries (LMICs). Adolescents with Type 1 Diabetes (n = 7) and HIV (n = 4) were researched in 11 out of 22 studies. Only eight studies were conducted in LMIC, of which four were in Africa. CONCLUSIONS: HRQoL instruments are useful in measuring mental health and well-being in adolescents living with a CC. However, relatively few valid measures of mental health and mental well-being for adolescents living with a CC exist, which accentuates the paucity of research on mental health and mental well-being of adolescents who are living with a CC. Specific measures need to be developed in and for LMICs where cultural contexts affect mental well-being in unique ways. Systematic review registration: PROSPERO CRD42020186707.