RESUMO
BACKGROUND & AIMS: Long-term home parenteral nutrition (HPN) may cause distress and negatively affect quality of life (QoL). The HPN version of the Distress Thermometer and Problem List (DT/PL) was developed to evaluate distress during HPN. This study validates the DT/PL, examines referral wish for additional care, assesses opinions on the DT/PL, and studies risk factors for distress and referral wish. METHODS: Dutch and Scottish patients completed questions on socio-demographic and HPN-related general characteristics, the DT/PL, referral wish, the Hospital Anxiety and Depression Scale, and opinions on the DT. RESULTS: The HPN version of the DT/PL seemed valid and the PL sufficiently reliable. Cut-off score appeared to be 6. Consequently, 45% of patients were diagnosed as clinically distressed. Fifty-three percent had a referral wish. Emotional and physical problems were most strongly associated with distress. Not being able to work related to elevated distress. Female gender and co-morbidity related to referral wish. Opinions on the DT were generally positive. CONCLUSION: The DT/PL appears to be a good instrument to regularly gain insight into distress and referral wish in HPN patients. Use of the DT/PL facilitates support to patients who most need and want it, thus improving quality of care and QoL.