Objective: The complex, often contra-intuitive, multidimensional, and fluctuating mechanism of Anorexia/Cachexia Syndromes (ACS) are distressing for patients and their partners, potentially impeding successful therapeutic multidisciplinary interventions. No assessment instrument encompass this important problem. To systematically assess the eatingrelated distress (ERD) of with patients advanced, incurable cancer and their partners.
Methods: Systematic item-pool generation based on semi-structured interviews conducted in focus groups and individual couples by a multiprofessional palliative care team. Inclusion of patients with weight loss >5% in 6 months and various tumor types. Intermittent content analysis (using maxqda) to ensure item-pool generation until saturation. Patients' estimation of eating-related problems (ERP, Visual Analogue Scale, 0=no problems, 10=worst imaginable problems) and the associated distress (ERD, VAS) are compared to their partners' estimations. Assessment of ACS by weight loss, abridged ESAS, and EORTC-QlQ-c30 ad hoc module anorexia/cachexia.
Results: The first 13 patients and partners reported ERP and ERD between 4.9 and 5.7. The ACS encompass a broad spectrum challenging the aim to continue until saturation. New items are generated and already translated in daily clinical practice of the study team. Examples are the misunderstandings of changing definitions of healthy eating, of the role of exercise (avoidance to spare energy), terror of calories counting, altered body image of partners, guilt of the cooking partner.
Conclusion: ERD of patients with advanced, incurable cancer and their partners seems to encompass multidimensional and individual issues potentially associated with different mechanism of ACS. Unrecognized ERD may sustain ineffective interventions.