Abstract
Dysphagia is a prevalent complication before, during and after treatment for head and neck cancer (HNC). Besides the medical and societal consequences, dysphagia has a negative impact on functioning, activity, participation and quality of life. These aspects are all affected by the environmental factors (EF). However, patient-reported outcome measures (PROMS) such as the Head-and-Neck Cancer Survivors' Assessment of Mealtimes (HNSAM), which thoroughly assess participation and EF in addition to function and activity, are rare. Therefore, this study aimed to translate and validate the HNSAM into Dutch (D-HNSAM). The HNSAM was translated according to the standardized procedure of translation & back-translation and according to the international cross-cultural adaptation process. A pilot study was then conducted with 10 HNC patients to assess the linguistic features and comprehensibility of the test items. Finally, the D-HNSAM was completed by 50 participants who were at least 6 months post-treatment for HNC. The Performance Status Scale for Head and Neck cancer patients (PSS-HN)- subscales normalcy of diet and eating in public, the Dysphagia Handicap Index (DHI), the Functional Oral Intake scale (FOIS) and the Utrecht Scale for Evaluation of Rehabilitation-Participation (USER-P) were used to examine the psychometric properties of the D-HNSAM. High correlations with related assessment tools and low correlations with unrelated assessment tools were expected. Internal consistency was found to be weak to good. Test-retest reliability, convergent validity and divergent validity were demonstrated except for the EF subscale. The D-HNSAM can detect differences in impact of dysphagia on daily functioning and quality of life. The D-HNSAM is a reliable and clinically valuable PROM for assessing the impact of dysphagia on daily functioning and quality of life in patients with HNC. The unique aspect of this PROM, the subscale EF, has unfortunately weak psychometric properties and requires further refinement.