• Christelle Khadra, Sylvie Le May, Isabelle Tremblay, France Dupuis, Chantal Cara, Geneviève Mercier, Marie-France Vachon, and Jacinthe Lachance Fiola.
• Pain Res Manag. 2015 Jul 1; 20 (4): 213219213-9.

BackgroundWhile mortality due to pediatric cancer has decreased, suffering has increased due to complex and lengthy treatments. Cancer in adolescence has repercussions on personal and physical development. Although suffering can impede recovery, there is no validated scale in French or English to measure suffering in adolescents with cancer.ObjectiveTo develop an objective scale to measure suffering in adolescents with cancer.MethodsA methodological design for instrument development was used. Following a MEDLINE search, semistructured interviews were conducted with adolescents 12 to 19 years of age who had undergone four to six weeks of cancer treatment, and with a multidisciplinary cohort of health care professionals. Adolescents with advanced terminal cancer or cognitive impairment were excluded. Enrollment proceeded from the hematology-oncology department⁄clinic in Montreal, Quebec, from December 2011 to March 2012. Content validity was assessed by five health care professionals and four adolescents with cancer.ResultsInterviews with 19 adolescents and 16 health care professionals identified six realms of suffering: physical, psychological, spiritual, social, cognitive and global. Through iterative feedback, the Adolescent Cancer Suffering Scale (ACSS) was developed, comprising 41 questions on a four-point Likert scale and one open-ended question. Content validity was 0.98, and inter-rater agreement among professionals was 88% for relevance and 86% for clarity. Adolescents considered the scale to be representative of their suffering.ConclusionsThe ACSS is the first questionnaire to measure suffering in adolescents with cancer. In future research, the questionnaire should be validated extensively and interventions developed. Once validated, the ACSS will contribute to promote a holistic approach to health with appropriate intervention or referral.

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