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Objective (1) To explore the reasons for not seeking help for severe pelvic floor symptoms after gynaecological cancer treatment. (2) To determine the willingness to undergo treatment for these symptoms. (3) To invite suggestions to improve outpatient care.
Design Qualitative study using semistructured interviews.
Setting Vulvar, endometrial or cervical cancer survivors treated in the Academic Medical Centre, Amsterdam, the Netherlands between1997 and 2007.
Population Purposively selected sample from 138 eligible respondents to pelvic floor-related questionnaires, who were severely bothered by their symptoms (>75th percentile of domain sum score of questionnaires) and had not sought medical help.
Methods After each semistructured interview, a checklist with reasons for not seeking help was complemented with newly mentioned reasons. The interviews were stopped when data saturation was accomplished, i.e. three consecutive interviewees had not revealed new reasons. The interviews were analysed by two researchers independently.
Main outcome measure Help-seeking behaviour for bothersome pelvic floor symptoms.
Results Fifteen interviews were conducted. Most reported reasons for not seeking help were that women found their symptoms bearable in the light of their cancer diagnosis and lacked knowledge about possible treatments. Seven women were willing to undergo treatment. Eleven women stated that care should be improved, specifically by timely referral to pelvic floor specialists and additional care by oncology nurses.
Conclusions There is a need for standardised attention to adverse effects on pelvic floor function after cancer treatment. This could be realised by quantifying symptoms using questionnaires, standardised attention for such symptoms by gynaecological oncologists or oncology nurses, and timely referral to pelvic floor specialists of women with bothersome pelvic floor symptoms.