Diagnosis and treatment of OC, mostly comprising debulking surgery and subsequent chemotherapy, entail severe symptom burden and a significant loss of patients' quality of life.
Correspondingly, our study results indicate impairments for a wide range of somatic and psychological symptoms at the beginning of chemotherapy. Thus, at baseline, levels of anxiety and the prevalence of depressive symptoms were increased as reflected by self- as well as proxy-ratings. Similarly, fatigue (in terms of general fatigue, physical fatigue and reduced activity) was found to be high. Patients, however, recovered significantly over time up until aftercare. A strong improvement was not only found for anxiety and regarding the prevalence of depressive symptoms but also for almost all aspects of functioning covered by the QLQ-C30 as well as for fatigue (less pronounced for mental fatigue and reduced motivation). Both HADS as well as MFI-20 scores returned toward general population levels [30
From a clinical point of view, this degree of recovery was remarkable and unexpected forasmuch as patient-reported QOL measures correlate with standard toxicity criteria [32
] and provide viable information on the impact of treatment-related toxicity on patients' functioning. Other studies, however, report similar pronounced improvements of QOL in OC patients during chemotherapy until one year follow-up as found in this study [33
Unfortunately, the small sample size did not allow for detailed subgroup analyses, which is the major limitation of the study. Thus, it was not possible to investigate if the observed QOL-scores can be attributed to response to treatment. Bezjak et al. [33
], however, surmise that the improvement of QOL is not an effect in treatment responders only but can as well be observed in cancer patients with stable disease.
One possible explanation for the improvement of QOL in the course of treatment is the choice of baseline. In studies on QOL in OC patients, assessing baseline scores post-surgically is considered as standard. Von Gruenigen et al. [34
], though, suggest low QOL at the beginning of chemotherapy to be an effect of surgery and, in accordance with Bezjak et al. [33
], discuss this low post-operative baseline as the potential reason for rapid QOL improvement.
This interpretation might also apply for the present study. Since baseline scores were assessed at beginning of chemotherapy, i.e. approximately only 10 days after surgery, high somatic and psychosocial symptom burden resulting in low QOL was expected due the burdensome circumstances of this specific treatment period. As chemotherapy has to start without delay, patients are usually not discharged from hospital after surgery, thereby counteracting patients' desire to regain strength and activate resources in their familiar surroundings at home.
This fearful anticipation of a probably fatal outcome is mingled with the fear of chemotherapy and its expected side-effects. Furthermore, the impact of surgery on QOL could also be influenced by tumor stage and thus, the extent of the surgical intervention but also by intra- or postoperative complications. In our sample, distribution of tumor stage can be considered as representative for the population of OC patients [1
Subsequent increase in QOL might partly be due to the actual initiation of adjuvant chemotherapy, which introduces a structured course of events into the patient's clinical daily life. The patient works towards a foreseeable end of treatment, gaining a feeling of security from the well-regulated procedure, which supports adjustment to the current situation. Moreover, OC patients may very well compensate decreased functioning and well-being with increased social support [37
Other psychological factors may also contribute to the increase of QOL scores in ovarian cancer patients to a level similar to general population norms.
The importance of patients' expectations in the context of evaluation of QOL has already been pointed out by Wan et al. [38
] who demonstrated that the discrepancy between what patients expect and what actually occurs with treatment is a significant predictor for every dimension of health-related QL. The expectation of cure or at least, prolongation of survival, which is more pronounced in the active stage of treatment, might play an important role. Doyle et al. [39
] found that 65% of the 27 women with advanced ovarian cancer expected chemotherapy to prolong their survival and 42% to cure them. However, negative and unrealistic expectations might also translate into adverse experiences in the course of treatment [40
], which underlines the importance of assistance in terms of psychooncological support in order to establish and maintain realistic QOL expectations [38
When prior expectations are challenged by actual treatment experiences, patients' perspectives might be altered leading to a possible change in the subjective appraisal of QOL. This 'response shift' is defined as a process of change in internal standards of measurement, values and the self-evaluation as well as conceptualization of quality of life over the course of the disease trajectory [41
]. This model provides a dynamic feedback loop to explain how quality of life scores can be stabilized despite changes in objective health status [42
The possibility of response shift should, however, not blur the fact that "toxicity to which the patient has accommodated still is toxicity" [43
After completion of treatment and within the time frame of aftercare, patients are relieved about having completed a difficult treatment period. Clinical experience suggests that levels of psychological distress probably increase during later aftercare as integration in medical treatment procedures is less intense and the patient is confronted with the fear of recurrence. Results from a study conducted by Mirabeau et al. [44
] investigating long-term adjustment and QOL in survivors after a minimum of 3 years without recurrence, support the clinical impression by showing that anxiety when getting the results of CA-125 relapse-screening is still an issue for these patients. At a 10-year follow up assessment, findings by Greimel et al. [22
] showed QOL in OC survivors returning to normal levels, yet in a small sample only.
Accordingly, one other limitation of the present study is that follow-up assessment was terminated after 9 months. Continuous assessment beyond early aftercare might have provided important information on the stability of the rather good condition at study end point. Available literature on long-term quality of life in OC patients, especially in aftercare, is scarce [45
] also because long-term survival rates are rather low.
In addition to distress due to fear of recurrence, OC survivors often report sexual problems attributed to cancer [44
]. Unfortunately in the present investigation, no analysis of sexual functioning and impairment was possible given that only a few patients answered the questions pertaining to this matter. This is, however, a common difficulty reported in several studies [28
The problem of some issues not being volunteered by patients is restricted neither to sexual issues nor to questionnaire assessment. As already mentioned previously, even the most prevalent symptoms often remain unaddressed during physician consultation. As a result, only a certain part of the patients in need receives targeted interventions [8
Routine QOL assessment can contribute to optimized symptom management by eliciting unrecognized problems while monitoring the course of patients' level of functioning and well-being. Even more so as self-reports are reported to be more sensitive to underlying changes in functional status and are reported sooner than rated by physicians [48
]. To support feasibility in clinical routine, QOL assessment can be done computer-based, allowing easy data processing and real-time feedback to the medical staff [49
]. Furthermore, the electronic approach allows building large datasets which can be used to calculate specific reference values. Software providing these features is currently implemented in oncological in- and outpatients units in several hospitals in Austria [50