Assessment of psychosocial outcomes in adolescents and young adults with cancer: a systematic review of available instruments

Abstract

Assessment of psychosocial outcomes in adolescents and young adults with cancer: a systematic review of available instruments Claire E Wakefield,1,2 Pandora Patterson,3 Fiona E J McDonald,3 Helen L Wilson,1,2 Esther Davis,3 Ursula M Sansom-Daly2,41School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia; 2Centre for Children's Cancer and Blood Disorders, Sydney Children's Hospital, Sydney, NSW, Australia; 3CanTeen, Sydney, NSW, Australia; 4School of Psychology, University of New South Wales, Sydney, NSW, AustraliaPurpose: Given the burgeoning body of research relating to the psychosocial needs of adolescents and young adults (AYAs) with cancer, this review aimed to evaluate the psychometric properties and appropriateness of the instruments available for use in this unique population. Specifically, we reviewed published instruments developed to assess psychological distress (depression, anxiety, stress, and fear of recurrence), psychological growth (resilience, posttraumatic growth, and benefit finding), unmet needs, coping, quality of life, identity, and mindfulness-based practices and skills in AYAs with cancer. Given the dearth of validated instruments targeting AYAs with cancer, this review also provides a summary of promising measures yet to be formally validated in this population.Methods: Five electronic databases were searched by a team of six researchers, and studies involving AYAs (who have or have had cancer) aged 15–30 years, and published between 1982 and 2012 were reviewed. Of 410 abstracts, 7 instruments were identified as validated in this population, with a further 19 identified as promising.Results: While there are numerous scales to assess psychosocial outcomes in cancer, few have been specifically validated for AYAs affected by cancer, particularly in the domains of psychological distress, psychological growth, coping, unmet needs, and identity. There are relatively more instruments validated, or promising, for assessment of quality of life than scales for other domains.Conclusion: In the AYA context, scale selection should be undertaken with thought directed towards the characteristics of this sample (eg, developmental maturity, literacy, and social context), the practicalities of the setting (eg, available funding and resources, time restrictions, and researcher expertise), and the science underlying the scale (eg, theoretical framework and psychometric properties). While multiple measures of psychosocial outcomes are frequently used in AYAs, further research is clearly needed to provide rigorous evidence of the reliability and validity of these tools in young people affected by cancer.Keywords: adolescents, young adults, psychometric outcomes, psychological outcomes, distress, resilience, coping, quality of life, unmet needs, identity, mindfulness