The Patient Concerns Inventory—Head and Neck ( PCI ‐ HN ): Swedish Translation and Cultural Adaptation

ABSTRACT Introduction The Patient Concerns Inventory—Head and Neck (PCI‐HN) is an item prompt list used in clinical settings to help patients with head and neck cancer (HNC) and their families address diagnosis, treatment, recovery and well‐being issues. The PCI‐HN has two versions: PCI‐HN AD (after diagnosis) and PCI‐HN PT (post‐treatment). Today, no Swedish HNC‐specific prompt list exists. Aim To translate and culturally adapt the two PCI‐HN into Swedish, ensuring conceptual, semantic and operational equivalence with the original English versions. Methods The 10 steps suggested by the International Society for Health Economics and Outcomes Research (ISPOR) were followed. The two PCI‐HN were forward‐ and back‐translated; review by the research group reached consensus on translated versions. Patients and healthcare professionals evaluated the translated versions in three phases. After each phase, corrections were made and new versions were tested. Phase A involved a focus group interview with a national multi‐disciplinary team of healthcare professionals. Phase B included individual patient interviews. In phases A and B, the participants considered the understandability and relevance of each item in the PCI‐HN. In phase C, healthcare professionals rated perceived relevance on a questionnaire (content validity). After the research group had agreed on final versions, the PCI‐HN was reviewed by a proofreader. Results Ten healthcare professionals (Phase A), 10 patients (Phase B) and 10 healthcare professionals (Phase C) participated. Adaptations were made to PCI‐HN AD and PCI‐HN PT to improve cultural, linguistic, and clarity aspects in response to the results. Content validity for the PCI‐HN was excellent. Conclusion A translated and culturally adapted version of the PCI‐HN is now available in Swedish. Patients and healthcare professionals highlighted its usefulness. The PCI‐HN can now be implemented into the Swedish healthcare system to support patients and their families in raising issues related to the disease and treatment, and during the post‐treatment period.