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Apr 2017 - Apr 2018

Pragmatic Development of a tool to help men report Genitourinary Cancer-related Lymphoedema

Location

Swansea

Supervisor

Dr Melanie Thomas

Cancer Type

Genito-urinary

Funding Type

iGrant

Status

Complete

Research Type

Cancer Control, survivorship and outcomes research

Study

The study wanted to establish whether the use of a 2-sided self-report questionnaire (LGUCQ) would help men disclose to health professionals that they were having problems with leg and genital oedema (swelling) after being treated for genitourinary cancer. The study first analysed the completed questionnaires of 20 men currently receiving treatment from lymphoedema services in Wales. The researcher then sought the detailed views of male patients, a urology doctor and nurse, and lymphoedema practitioners who had used the self-report questionnaire in their clinics.

Results

A much greater appreciation of the discomfort and daily practical difficulties, (mental, physical and social) suffered by these men was gained by the health professionals. The 2-sided questionnaire helped men give voice to their concerns and helped health professionals broach the potentially embarrassing subject of genital swelling much sooner in their series of consultations. Men described feeling less alone in their suffering because the LGUCQ helped normalise their experience. Earlier appreciation of problems was recognised as likely to lead to earlier and more appropriate care.

Impact

Men appreciated being asked directly about these problems as it helped their experience feel more normal. Finding the words to describe the range of symptoms and practical difficulties with daily activities, helped both the patient and their health professionals find the right care for their situation.

Next Steps

Interest in the self-report tool has been shown from other countries and the men participating in this study were keen that other men in their situation should have the same opportunity as they had to express and discuss the specific problems experienced after genitourinary cancer treatment.

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