A study of symptoms described by ovarian cancer survivors

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Abstract

Objective

A cross-sectional, observational study to evaluate physical and psychological symptoms experienced by patients following completion of treatment for ovarian cancer and compared to symptoms documented in their hospital notes.

Methods

Women attending follow-up clinic at Hammersmith Hospital having undergone treatment for primary or relapsed ovarian cancer were asked to complete two validated questionnaires (EORTC QLQ-C30 and QLQ-OV28) and a “wellbeing thermometer”. Results were assessed and stratified by patient age, tumour stage, relapse status, type of chemotherapy received and treatment-free interval. Symptoms reported in questionnaires were compared to those documented in patients' hospital notes.

Results

Of 116 women approached, 100 (86%) participated in this study and had received chemotherapy for ovarian cancer between 2003 and 2010. The most frequently described and severe symptoms reported in the questionnaires were emotional symptoms, negative feelings about treatment or prognosis, fatigue and pain. Dyspareunia, cognitive impairment and peripheral neuropathy were also frequently described. Symptom severity was independent of variables such as disease stage, type of chemotherapy received and relapse status. The “wellbeing thermometer” scores closely correlated with pain, fatigue, weakness, gastrointestinal symptoms and attitude to disease or treatment (p < 0.001). There was a marked discordance between questionnaire-reported symptoms and those recorded in hospital notes.

Conclusions

The majority of women surveyed experienced persistent psychological and physical symptoms following ovarian cancer treatment; in particular: psychological concerns, sexual inactivity and fatigue, all potentially reversible with appropriate interventions. Our results highlight the extent of symptoms described by ovarian cancer survivors and the need for them to be adequately acknowledged and addressed.

Highlights

► Ovarian cancer survivors experience long lasting symptoms. ► Potentially reversible symptoms not optimally identified by physicians. ► Need for re-evaluation of methods used for symptom assessment.

Introduction

Ovarian cancer is the second most common gynaecological cancer in the UK, occurring in 1:54 women during their lifetime. Approximately 7000 new cases are diagnosed in the UK each year and 225,000 worldwide [1]. Although standard primary treatment for epithelial ovarian, fallopian tube or primary peritoneal cancer (hereafter described as “ovarian cancer”) has remained essentially unchanged for the last 15 years, greater surgical expertise and the use of multimodal therapies have led to improvements in five year survival, from 20% in 1970s to over 40% today [2]. This parallels improvements in survival from all cancers, and a consequent increase in the number of cancer “survivors” or people living “with a diagnosis of cancer from some point in their past” [3], currently numbering 2 million in the UK alone but estimated to increase by 3.2% per year [4]. As cancer survivors have been shown to have poorer long-term physical and psychological wellbeing than the general population, increasing emphasis is being placed on the early identification of adverse symptoms as well as, where possible, the provision of medical or psychological interventions in order to reduce long term morbidities [5]. Currently, post-treatment symptoms experienced by patients are usually identified and addressed by their physicians during hospital follow-up visits which are conducted at regular intervals for up to 5–10 years. However, a study performed on 1425 patients with lymphoma, breast, prostate, gynaecological and colorectal cancers demonstrated that cancer patients often under-report their symptoms to healthcare providers [6].

There are almost no published reports assessing the longer term physical and psychological wellbeing of ovarian cancer survivors in the UK, perhaps as a legacy of its previously poor 5-year survival. Studies of ovarian cancer survivors in North America and Norway have yielded conflicting results highlighting the need for more research in this field [[7], [8], [9], [10], [11], [12], [13]]. To assess symptoms and overall state of health in our patients, we conducted a cross-sectional study of women who had previously completed treatment for primary or relapsed ovarian cancer using two questionnaires and a “wellbeing thermometer”. We compared these questionnaire-reported symptoms to those documented in their hospital notes at the time of their follow-up visits.

Section snippets

Subjects

Ovarian cancer patients attending follow-up clinic at the Garry Weston Cancer Centre, Hammersmith Hospital were identified. Subjects were eligible if they had: 1) A diagnosis of primary or recurrent epithelial ovarian, fallopian tube or primary peritoneal cancer treated initially with surgery and carboplatin-based chemotherapy. 2) Completed chemotherapy for primary or recurrent ovarian cancer at some time in the past. 3) No evidence of actively recurring or progressive disease. 4) No concurrent

Patient characteristics

A total of 116 patients were invited to enter the study between February and June 2010; 100 patients (86%) agreed to participate and were given the questionnaires and 16 (14%) declined to take part due to personal preference or language difficulties. Patient characteristics are listed in Table 1. All had undergone complete debulking surgery followed by chemotherapy between 2003 and 2010 with 62% having completed treatment within the preceding two years (Fig. 1). Of the 100 participants, 81

Discussion

We show here that the majority of ovarian cancer survivors assessed in this study had ongoing physical and psychological concerns which do not appear to lessen over time. The most frequently-observed and severe of these were emotional symptoms, negative feelings about their treatment or prognosis, fatigue and pain. Other frequently-observed symptoms include dyspareunia and neurological problems such as cognitive impairment and peripheral neuropathy. Symptoms that were less common but occurred

Funding

Study was approved and registered by the Imperial College NHS Trust Audit Committee, no additional funding was required.

Conflict of interest statement

All authors declare no conflict of interest.

Acknowledgements

We would like to thank the patients who generously donated their time in order to participate in this study, and the nurses and other members of the staff at the Garry Weston Cancer Centre, at Hammersmith Hospital. We thank Bernard North (Imperial College Statistical Service) and Paul Bassett (StatsConsultancy Ltd) for their statistical advice. We thank Ovarian Cancer Action, the Rosie Williams Charitable Foundation and Hannah Wyatt for their support and help with our survivorship programme.

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