Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs—a scoping review

Table 2 Data extraction template

General information	Methods	Participants	Respondents to PROM	PROM	Results
Author and year, country	Primary aim of the study Whether the aim was to: 1) Develop a new PROM 2) Test a PROM 3) Evaluate an intervention with PROM 4) Assess the characteristics of a population with PROM	Population, sample size and age Group according to Together for Short Lives (TfSL).^a Care pathway according to TfSL^b	Self-report, proxy, both self-report and proxy, other, specify in text	Target group and age of original PROM Whether the PROM was: 1) Developed for adults and tailored to children 2) Developed for children 3) Developed as a proxy measure 4) Unknown/ not clear Experiences with PROM (sensitive/ responsive/ any comments/ limitations)	Results of interest to our aim

PROM Patient reported outcome measures, TfSL Together for Short Lives
^aPatient groups as defined by TfSL [39]; Group 1: Life-threatening conditions for which curative treatment may be feasible but can fail; Group 2: Conditions in which premature death is inevitable. Treatment may aim to prolong life and allow normal activities; Group 3: Progressive conditions without curative treatment options. Treatment exclusively palliative may extend over many years; and Group 4: Irreversible but nonprogressive conditions causing severe disabilities leading to susceptibility to health complications and likelihood of premature death
^bCare pathways defined by TfSL [24]; Care pathway 1: Time of diagnosis or recognition of LL/LT condition; Care pathway 2: During ongoing care; Care pathway 3: End of life care; Care pathway 0: Perinatal care; and Care pathway 4: During transition to adulthood

ISSN: 1472-684X