Patient-reported outcomes in patients with endocrine tumors of the ileum.

BACKGROUND: Patients with ileal endocrine tumors have a good survival rate. AIM: To assess the quality of life of patients with endocrine tumors of the ileum. PATIENTS: Forty-four consecutive patients (30 males, 14 females, mean age 61.1 years, range 26-79) with proven endocrine tumor of the ileum were studied. METHODS: Italian version of the SF-12 Health Survey (SF-12) questionnaire able to explore the physical and mental aspects of daily life were used. Forty-four sex-matched and age-matched Italian normative participants were also considered for SF-12 evaluation. RESULTS: The overall analysis of the SF-12 questionnaire in the 44 patients showed values of physical component summary (PCS) and mental component summary (MCS) scores representative of a relatively good quality of life and not significantly different from those of the normative population (PCS: 46.5+/-10.3 vs. 47.0+/-4.7, P = 0.792; MCS: 45.9+/-10.8 vs. 49.1+/-2.0, P = 0.057). PCS was significantly impaired in nonsmokers (P = 0.028), in those who underwent less invasive surgery (P = 0.007), in those who had pain at onset of the disease (P = 0.002), and in those who received multimodality treatment (P = 0.013). To evaluate the factors independently related to PCS, a multivariate analysis was performed and we found that specific surgery (P = 0.046) and presence of pain at onset of the disease (P = 0.001) were the only two factors that showed an independent relationship with PCS. CONCLUSION: The patients with endocrine tumor of the ileum seem to perceive their quality of life as relatively good.

Are importance-satisfaction discrepancies with regard to ratings of specific health-related quality-of-life aspects valid indicators of disease- and treatment-related distress among patients with endocrine gastrointestinal tumours?

The aims of this study were to investigate: (1) whether ratings of importance of, satisfaction with, and symptom/function of specific health-related quality-of-life (HRQoL) aspects are related, and (2) whether an importance-satisfaction discrepancy with regard to ratings of a specific HRQoL aspect is a valid indicator of distress. Eighty-three patients with endocrine gastrointestinal tumours completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and answered questions about importance of, satisfaction with, and symptom/function of 12 HRQoL aspects. The patients reported a relatively high HRQoL in terms of physical, emotional and social function. Most of the HRQoL aspects were considered as important for a good quality of life. High satisfaction was related to fewer symptoms and a better function. Patients who assigned a higher importance than satisfaction rating to an aspect reported a lower quality of life for the same aspect. The findings suggest that importance-satisfaction discrepancies are valid indicators of patient distress and illustrate the importance of asking patients not only about frequency and level of symptoms, but also about importance of and satisfaction with when assessing patient quality of life.

Health-related quality of life in patients with endocrine tumours of the gastrointestinal tract.

Health-related quality of life (HRQOL) (EORTC QLQ-C30) and levels of anxiety and depression (HADS) were investigated in patients with endocrine tumours of the gastrointestinal tract treated with interferon and/or a somatostatin analogue. In addition, patient perceptions of the importance of and satisfaction with some HRQOL aspects were studied. QOL was perceived as quite good, but more than half of the patients reported diarrhoea. The levels of anxiety and depression were low. Patients perceived physical HRQOL aspects as most important for a good QOL and stated the highest satisfaction with some social aspects. Patients who reported high levels of anxiety or depression were less satisfied with several HRQOL aspects, had more health problems, and a lower level of functioning on several of the EORTC QLQ-C30 scales and single items. Neither demographic nor medical background variables seemed to have an influence on the results. The relatively high QOL could be explained by the fact that most patients had had their treatment for a long period and thus had time to adjust to the situation.

Quality of life in patients with endocrine tumors of the gastrointestinal tract: patient and staff perceptions.

Patient and staff perceptions regarding the importance of selected quality-of-life (QoL) aspects and patient ratings of their present QoL (EORTC QLQ-C30) were investigated. The study comprised 17 patients with endocrine tumors of the gastrointestinal tract and their staff, paired in dyads. Both patients and staff rate physical aspects of life (e.g., "wash yourself, dress, eat, etc.," "have a good health," "not have pain") as most important for experiencing a good QoL. Staff considered work as more important for experiencing a good QoL than did patients. Patients rated their QoL as relatively good and were more satisfied with certain QoL aspects than staff perceived them to be. Staff did not accurately judge a certain patient's satisfaction with various QoL aspects, which suggests that there is room for staff to improve their understanding of these aspects. There were no significant mean value differences between patient and staff ratings of patient anxiety and depression, but no significant correlations within dyads. This suggests that the communication between patients and staff could be improved in this respect.