Objectives: Around one-third of women with gynecological cancer report elevated levels of distress. While this is anticipated as people adjust to a cancer diagnosis and its treatment, severe or persistent symptoms can negatively impact women’s health. This study sought to provide enhanced understand distress and their sources in women previously treated for gynecological cancer.
Study design: This two-phase study collected both qualitative and quantitative data from women attended one of several large cancer services Queensland and New South Wales. Initially data were collected via semi-structured focus groups from women recently treated for gynaecological cancer who were attending a hospital-based cancer service with data interpreted using simple inductive thematic analysis with at least 70% agreement. From information obtained in focus groups, a structured questionnaire was developed and administered to more than 350 women within 12 months of active treatment.
Results: Elevated distress was common in this population and was regularly related to high symptom burden and adjustment concerns. For women less than 45 years of age, other important concerns were related to sexuality and intimacy, changes in their physical appearance (including post-treatment vaginal changes), and anxiety whereas for women 45 years and over, other concerns were associated with knowledge of cancer support services, fatigue and sleep disturbance.
Conclusions: For women with gynaecological cancer, the treatment-related effects can be associated with significant and unexpected distress. Many women in this sample reported shared concerns, though some themes were more prevalent in specific sub-groups. This research also highlighted gaps in existing supportive cancer care as, for a significant proportion of participants, concerns remained unaddressed.