In this prospective, observational study there was no correlation between perceptions of quality and satisfaction with care and symptom severity. Clinical variables, such as prior number of chemotherapy regimens or time since diagnosis, also were not related to the symptom severity score. There was a trend towards a larger proportion of patients who had multiple prior chemotherapy regimens reporting pain. Weakness was the most common symptom reported. Anxiety and depression were correlated with each other and symptom severity was correlated with depression. We also found the QUEST Survey to have test-retest reliability when used as a written instrument in an outpatient setting.
Quality cancer care includes provision of the most effective curative therapies, as well as excellent symptom management and sensitive end-of-life care. Symptom management, the core of palliative care, is an integral part of cancer care throughout the disease trajectory, while "end-of-life" care usually refers to care during the terminal phase or last few weeks or months of life. There is no objective dividing line between palliative care and end-of-life care and we use the terms interchangeably [6
] in this paper to differentiate them from curative aspects of care. In that the majority of patients in our sample had ovarian cancer, which typically recurs after an initial remission, goals of palliative therapy include both prolonging survival as well as maintaining or improving quality of life. Weakness and fatigue are problematic in women with gynecologic cancer, especially ovarian cancer patients who receive multiple chemotherapy regimens. In an interesting research design, Ferrell et al. abstracted data from "Conversations!", a newsletter for those with ovarian cancer in which patients publish their commentary [6
]. Data were abstracted from personal stationery, greeting cards, and e-mail. In the pre-diagnostic complaints, fatigue was secondary only to bloating/abdominal swelling. Sun et al. assessed 70 patients with ovarian cancer undergoing chemotherapy for primary or recurrent disease [7
]. While nausea and vomiting were the most problematic, fatigue also was a significant problem and higher levels of distress were associated with recurrent disease. These data suggest that there may be a predictable progression of symptoms from the initial abdominal discomfort to progressive weakness and fatigue. Thus it may be helpful for clinicians to specifically assess for these symptoms and prepare patients for their occurrence.
The QUEST survey focuses on the patient's perception of provider's time, access, and communication. In our study scores were consistently high and there were no differences between nurses and doctors as health care providers. Patients were seen in the oncology clinic office usually by the same gynecologic oncologist and chemotherapy nurse specialist. Patients were assured that their responses to questionnaires would be kept anonymous. It is possible, however, that patients may have provided answers that they felt their health care provider expected to hear and did not feel as if they could express negative feelings. Sulmasey et al revealed differences with this survey between physicians and nurses. However, this instrument may not be sensitive enough to detect variations in clinics where patients receive consistent care from the same attending physicians and nurses [3
]. It is also possible that this questionnaire is not sensitive enough to pick up small fluctuations in care.
This study revealed no correlation between satisfaction with care and symptom severity. This may be a function of the limited variance in the quality of satisfaction measures. However, it also may suggest that patient evaluation of care is related more to the interpersonal aspects (trust, caring) of the physician-patient or nurse-patient relationship than it is to physical symptoms. If the patient feels confident in the health care providers and perceives them to be sincerely concerned, even if the symptom management is not completely effective, the patient remains satisfied. This reinforces the importance of providers focusing on interpersonal communication, as well as provision of technically competent care, to improve satisfaction with care.
Weaknesses of the study include the limited sensitivity of the QUEST survey with this population of patients. Because of the multidimensional nature of quality of care, a single measure cannot provide a complete assessment of impact. Recent instruments to evaluate symptom severity and satisfaction with care have been developed and may be more appropriate for use in future studies [14
]. Other options in quality of life (QOL) measures could include FACIT-Pal for palliative care [16
], FACIT-TS-PS for treatment satisfaction [16
], and possibly the Missoula-VITAS QOL index designed to measure QOL of patients with advance incurable diseases, weighing each dimension according to patient-reported importance [17
]. An additional limitation was the brief measure of fatigue, which was the major symptom in this population. A detailed fatigue measure such as the FACIT-F should be administered to expand on the symptom evaluation for further interventions [16
]. Many of the above tools were unavailable at the beginning of this study in 2003. Future directions include an ongoing intervention trial targeting symptom improvement in ovarian cancer patients during palliative chemotherapy.