Frequency of side effects in outpatient cancer care and their influence on patient satisfaction--a prospective survey using the PASQOC questionnaire.

STUDY OBJECTIVES: The aims of the study were to examine the frequency of side effects and fatigue in ambulatory cancer patients and to analyse how these symptoms are reflected in patient satisfaction. SETTING: Private practices (N = 41) and day hospitals (N = 8) in Germany took part in the study. PARTICIPANTS: The respondents were 4,538 patients with cancer (response rate: 82%). The diagnoses were: 25% breast cancer, 21% colorectal cancer, 11% lymphomas and 12% haematological malignancies; mean age 63.5 years; 57% female. MEASUREMENTS: The 2004 PASQOC questionnaire contained 63 problem-oriented items which covered patient satisfaction for 15 dimensions of care. One item specifically assessed the prevalence of 17 different side effects. A score reflecting the severity of fatigue (fatigue index) was computed from three additional questions. For statistical analysis of patient satisfaction, the problem frequency was computed for each item. RESULTS: The most frequent single side effects were fatigue (60%), hair loss (54%), nausea (51%), sleep disturbance (42%), weight loss (36%), diarrhoea (32%) and mouth ulcerations (31%). The mean number of side effects was 5 per patient (range 0 to 17). The fatigue index revealed that 42% of subjects complained of moderate and 28% of severe fatigue. Both the total number of side effects and the fatigue score were negatively associated with patient satisfaction. CONCLUSIONS: Side effects and especially fatigue are frequent problems in cancer patients and are related to the patients' assessment of cancer care. Routine symptom assessment may identify patients who require more comprehensive supportive care.

Patient satisfaction in outpatient cancer care: a prospective survey using The PASQOC questionnaire.

STUDY OBJECTIVES: To examine how outpatient cancer patients assess their cancer care in private oncology practices and day hospitals, and to identify the extent to which staff meet the expectations of their patients. SETTING: Private practices (n = 41) and day hospitals (n = 8) in Germany, including 16 "repeater" practices who had already participated in the 2002 Patient Satisfaction and Quality in Oncological Care (PASQOC) survey. PARTICIPANTS: n = 4,615 patients with cancer. Diagnoses: 25% breast cancer, 21% colorectal cancer, 12% haematologic malignancies, 11% lymphomas; mean age 63.5 years; 57% female; n = 1,639 patients from repeater practices. MEASUREMENTS: The 2004 PASQOC questionnaire contained 63 problem-oriented items which covered 15 different dimensions of care. Practice staff invited their patients to participate and surveys were mailed to all sampled patients. For statistical analysis, the problem frequency (PF) was calculated for each item. RESULTS: Of 5,600 patients who received the questionnaire, 4,615 replied (response rate: 82%). The best results were obtained for the dimensions "further support in daily life" (3% PF), "nurses" (5% PF), and "physician-patient-relationship" (8% PF). Potential for improvement was most pronounced for "handling of side effects" (39% PF), "partnership and shared decision making" (30% PF), "side effects" (30% PF) and "communication with other patients" (26% PF). Considerable differences in PFs between practices were observed. Mean results from the 16 repeater practices revealed only few changes compared to the 2002 PASQOC survey, although some practices had greatly improved their performance. CONCLUSIONS: The PASQOC questionnaire identified strengths and weaknesses of outpatient care for cancer patients. By providing a comparison with other practices, PASQOC can help staff of individual practices to improve their performance.