Background: The aim was to investigate HRQoL and psychosocial function among patients with carcinoid tumours, longitudinally and prospectively, and to compare HRQoL among patients with carcinoid tumours to that of the Swedish general population. The aim was also to investigate the prevalence of distress during the first year after diagnosis.

The aims of this study were to investigate 'satisfaction with care' and its possible relationships to hope, health-related quality of life, anxiety and depression. Eighty-five patients with endocrine gastrointestinal (GI) tumours responded to questionnaires a few days after a hospital visit. 'Satisfaction with care' was assessed by the Comprehensive Assessment of Satisfaction with Care (CASC), health-related quality of life by the EORTC QLQ C-30 and anxiety and depression by the Hospital Anxiety and Depression Scale (HADS). Patients' highest satisfaction scores were obtained for 'general satisfaction' and 'nurses' and doctors' technical skills'. The lowest satisfaction was expressed for 'doctors' interpersonal skills', 'nurses' communication skills' and 'care organization'. Patients reporting a clinically relevant level of anxiety were less satisfied with several care aspects than those reporting less anxiety. Satisfaction with 'nurses' communication skills' and 'doctors' interpersonal skills' was associated with several aspects of health-related quality of life, whereas satisfaction with 'doctors' information', 'nurses' technical skills' and 'general satisfaction' was not. Satisfaction with psychosocial aspects of care is related to the psychosocial function of patients with endocrine GI tumours.

Background:Quality of life is an important end point in clinical trials, yet there are few quality of life questionnaires for neuroendocrine tumours.Methods:This international multicentre validation study assesses the QLQ-GINET21 Quality of Life Questionnaire in 253 patients with gastrointestinal neuroendocrine tumours. All patients were requested to complete two quality of life questionnaires – the EORTC Core Quality of Life questionnaire (QLQ-C30) and the QLQ-GINET21 – at baseline, and at 3 and 6 months post-baseline; the psychometric properties of the questionnaire were then analysed.Results:Analysis of QLQ-GINET21 scales confirmed appropriate aggregation of the items, except for treatment-related symptoms, where weight gain showed low correlation with other questions in the scale; weight gain was therefore analysed as a single item. Internal consistency of scales using Cronbach's α coefficient was >0.7 for all parts of the QLQ-GINET21 at 6 months. Intraclass correlation was >0.85 for all scales. Discriminant validity was confirmed, with values <0.70 for all scales compared with each other.Scores changed in accordance with alterations in performance status and in response to expected clinical changes after therapies. Mean scores were similar for pancreatic and other tumours.Conclusion:The QLQ-GINET21 is a valid and responsive tool for assessing quality of life in the gut, pancreas and liver neuroendocrine tumours.

Patient and staff ratings of the importance of caring behaviours (Caring Assessment Instrument, CARE-Q) were studied and related to ratings of patient levels of anxiety and depression (Hospital Anxiety and Depression Scale) in 53 cancer patient-staff dyads. Both groups perceived anticipatory and comforting behaviours to be among the three most important. Patients considered staff explanation and facilitation as well as anticipation to be more important than did staff. Staff rated accessibility and comforting as more important than did patients. Patient and staff ratings of the importance of staff accessibility were negatively correlated. Thus, patient and staff 'did not agree strongly on the importance of several types of caring behaviours. Neither patient nor staff ratings of the importance of caring behaviours were associated with their ratings of the levels of anxiety or depression of specific patients. The results suggest that patient-staff communication requires specific knowledge and skills to make staff accurately judge what is important in making patients feel cared for.

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