Background. More refined information on sources of symptom-induced distress in a patient population can improve the quality of pretreatment information, make follow-up visits more efficient and guide research priorities in the efforts to modify treatments.
Methods. In a population-based epidemiological study covering all of Sweden, data were collected 1996–97 by means of an anonymous postal questionnaire. We attempted to enroll all 332 patients with stage IB-IIA cervical cancer registered in 1991–92 at the seven departments of gynecological oncology in Sweden.
Results. A total of 256 cases (77%) completed the questionnaire. After surgery, alone or in combination with intracavitary radiotherapy, several symptoms related to sexual dysfunction are the primary sources of symptom-induced distress (reduced orgasm frequency: much distress 23% (surgery alone) and 23% (intracavitary radiotherapy and surgery), respectively, overall intercourse dysfunction: much distress 17% and 20%, respectively, followed by lymphedema (much distress 14% and 14%, respectively). Dyspareunia (much distress 24%) and defecation urgency (much distress 22%) are two leading causes of distress after surgery and external radiotherapy. After treatment with radiotherapy alone, loose stool and dyspareunia were the two most distressful symptoms (much distress 19% each). When a symptom occurs, fecal leakage and reduced orgasm frequency are the two most distressful ones (measured as much distress, 38% each).
Conclusions. The observed symptoms are distressful and should, if one focuses on patient satisfaction, be given priority.