title: Development of the Adolescent Cancer Suffering Scale.
abstract: BACKGROUND
  While 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.
  
  
  OBJECTIVE
  To develop an objective scale to measure suffering in adolescents with cancer.
  
  
  METHODS
  A 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.
  
  
  RESULTS
  Interviews 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.
  
  
  CONCLUSIONS
  The 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.
authors.forename: Christelle
authors.initials: C
authors.lastname: Khadra
authors.forename: Sylvie
authors.initials: S
authors.lastname: Le May
authors.forename: Isabelle
authors.initials: I
authors.lastname: Tremblay
authors.forename: France
authors.initials: F
authors.lastname: Dupuis
authors.forename: Chantal
authors.initials: C
authors.lastname: Cara
authors.forename: Geneviève
authors.initials: G
authors.lastname: Mercier
authors.forename: Marie-France
authors.initials: MF
authors.lastname: Vachon
authors.forename: Jacinthe
authors.initials: J
authors.lastname: Lachance Fiola
mesh_terms: D000293:Adolescent; D000367:Age Factors; D002648:Child; D015331:Cohort Studies; D005260:Female; D006801:Humans; D007406:Interview, Psychological; D016239:MEDLINE / Q000706:statistics & numerical data; D008297:Male; D009043:Motor Activity; D009369:Neoplasms / Q000150:complications* / Q000523:psychology; D011788:Quality of Life; D015203:Reproducibility of Results; D012919:Social Behavior; D029181:Spirituality; D013315:Stress, Psychological / Q000175:diagnosis* / Q000209:etiology*; D011795:Surveys and Questionnaires; D055815:Young Adult