Patient-reported outcomes in paediatric cancer survivorship: a qualitative study to elicit the content from cancer survivors and caregivers

OBJECTIVES: Content elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS). DESIGN: Semistructured interviews to collect qualitative PRO data from survivors and caregivers. SETTING: A survivorship care clinic of a comprehensive cancer centre in the USA. PARTICIPANTS: The study included 51 survivors (<18 years old) and 35 caregivers who completed interviews between August and December 2016. Content experts coded the transcribed interviews into ‘meaningful concepts’ per PROMIS item concepts and identified new concepts per a consensus. Frequencies of meaningful concepts used by survivors and caregivers were compared by Wilcoxon rank-sum test. RESULTS: For pain and meaning and purpose, ‘Hurt a lot’ and ‘Purpose in life’ were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, ‘Needed to sleep during the day’/‘Trouble doing schoolwork’ and ‘Felt worried’ were top concepts for survivors, and ‘Felt tired’ and ‘Felt distress’/‘Felt stressed’ for caregivers. Survivors reported more physically relevant contents (eg, ‘Hard to do sport/exercise’; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, ‘Too tired to enjoy things I like to do’; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, ‘Have goals for myself’). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated. CONCLUSIONS: Important PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child’s and the caregiver’s viewpoints.