Abstract
BACKGROUND: Few tools exist to assess the palliative care needs of children with serious illnesses. One such tool is the Pediatric Complex Care Needs Assessment scale (ACCAPED), developed by a group of pediatric palliative care experts in Italy. It evaluates care complexity across 11 clinical domains to categorize palliative care needs into three levels: low, moderate, and high. AIM: This study aimed to translate and validate the Pediatric Complex Care Needs Assessment scale (ACCAPED) from Italian into English. DESIGN: The methodology included (1) translation, (2) expert panel validation, (3) end-user validation, (4) expert panel review, and (5) multi-site validation with a sample of children with various conditions and needs from Saudi Arabia, Kuwait, and Oman (N = 199). RESULTS: During the translation and validation process, optimization strategies were employed to improve the scale’s psychometric properties, including adjusting the weighting of the clinical needs domain, modifying the complexity category thresholds, adding three items, and removing 16 items, thereby enhancing the scale’s construct validity. Using a regression model, factors such as mobilization, pain, instability, and skin integrity were identified as significant influences on expert judgments of patient complexity. Like the original, the translated English version contains 11 domains. CONCLUSION: The English Modified-ACCAPED scale appears to be a practical tool for screening for palliative care needs in children with potentially life-limiting conditions and for guiding them early in their disease trajectory toward appropriate resources. However, future research is recommended to strengthen its psychometric properties. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12904-026-02031-1.