Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and Perspectives

Abstract

Purpose By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway. Background Patient-reported outcome measures in ovarian cancer have tended to focus on physical symptoms rather than the more complex psychosocial aspects of living with the disease. Using a “ground-up approach”, this study sought to comprehensively understand the health concerns that matter most to women with ovarian cancer as a first step in generating items for development into an ovarian cancer–specific patient-reported outcome measure. Patients and Methods Following an extensive literature review, we sought to capture the “patient voice” through a qualitative descriptive approach including a community conversation with ovarian cancer patients, their carers and clinicians, and interviews and focus groups with women with ovarian cancer. Thirteen women were interviewed individually, and two focus groups were conducted. A template thematic analysis was used to analyze the data. Results Key themes included challenges related to clinical diagnosis, treatment phase, altered relationships with family/friends, financial issues, relationships with health professionals and coping strategies. Within each key theme, several sub-themes emerged that were identified as various challenges experienced by participants. Diagnostic delay, chemotherapy and surgery-related challenges, negative impact of sexual well-being on partner relationship, communicational challenges with health professionals were among the few issues identified. In addition, self-empowerment was identified as a coping mechanism among participants. Conclusion By identifying priorities for women diagnosed with ovarian cancer we have highlighted the need for strategies to reduce diagnostic delays and improve quality of life for these women. Data will inform the development of an ovarian cancer–specific patient-reported outcome measure.

The Impact of Postoperative Complications on Short- and Long-Term Health-Related Quality of Life After Total Mesorectal Excision for Rectal Cancer

“…The differences in outcome between these studies might be subjected to the patient population, especially benign versus malignant, or the different questionnaires used in the studies. It might be related to the coping style which might differ between different patient populations, since patients with malignant diseases might be more resilient and cope differently with health deficits following postoperative complications, leading to a relative underestimation of the effect of complications on HRQoL 26,27 . Time points of measuring HRQoL were not equal in all studies, however, most studies measured HRQoL within the first 2 years after surgery.…”

Toll-like Receptor 2 as a Marker Molecule of Advanced Ovarian Cancer

“…Ovarian cancer is a global problem that affects women of all ages but is most commonly diagnosed in the postmenopausal period [18,19]. Due to the lack of effective screening and the usually asymptomatic course of the disease in its early stages, more than 75% of affected women are diagnosed too late, resulting in less than half of the patients diagnosed with OC surviving more than five years after their diagnosis [19,20]. It has been observed that a good prognosis for women with OC is directly related to the severity of the disease at the time of diagnosis [21].…”

Employing cognitive interviewing to evaluate, improve and validate items for measuring the health-related quality of life of women diagnosed with ovarian cancer

“…Findings included challenges related to diagnosis and treatment, adjustments in their relationships with family and/or friends, financial issues, some difficulties in their relationships with health professionals and comment on useful coping strategies. Through the use of template thematic analysis, these findings were further developed into a set of items that could be useful for the development of a values-based OC PROM (Additional file 1 ) [ 20 ].…”