Dr Rhian Noble-Jones, University of Glasgow, Scotland
rhian.noble-jones@glasgow.ac.uk

This brief article presents a new self-report tool for men – the Lower Limb and Genital Lymphoedema Questionnaire for Men (LLGLQ) and a call-to-action for Therapists in Australia.

Overview

Men are generally considered to be reluctant to disclose symptoms of discomfort, dysfunction and distress regarding their genitalia, and disclosure may rely on more than simply building a trust relationship (Bullen et al 2010). Initial disclosure of sensitive issues may be better with written instruments than verbal questioning (Sampurno et al 2016).  Further, interim findings of a current Tenovus Cancer Care (Wales) funded study would indicate that health professionals are likely to address sensitive issues earlier in the therapeutic relationship when using the cancer-related-lymphoedema version of the tool, LGUCQ (Noble-Jones et al 2014). This is perceived to have led to earlier identification of genital oedema-related problems, more specific, patient-led management, and enabled earlier teaching of dignity preserving self-management techniques. The study ends in April 2018 and will be fully reported later this year.

Background

The prevalence and incidence figures for genital oedema in both the male and female population are not known (Cormier et al 2010), despite slowly increasing attention over the last decade in both conservative and surgical settings. Assessment tools for genital oedema in women have been developed (Carter et al 2010; Yost et al 2013) but are not widely reported to be used. Until a few years ago there was no such tool for men. In 2014 the Lymphoedema Genito-Urinary Cancer Questionnaire (LGUCQ) was developed by lymphoedema therapist/researcher, Dr Rhian Noble-Jones, in collaboration with patients (with and without lymphoedema), urology and oncology medics, lymphoedema therapists, academics and an experienced researcher. The participating men, ages ranging from 24 to 76.

The 2017-8 project has been following the incorporation of the questionnaire into the pathway of care in three health boards in Wales. Interviews with patients are exploring whether the use of the LGUCQ is acceptable and helpful to them in recognising and reporting the early signs of lymphoedema, and what support is needed when completing the questionnaire. In addition, interviews with the implementing health professionals ask what support they needed, whether the use of the tool reveals new information which enhances care, and how best to implement it in practice.

During this period the need for a generic, non-cancer-related genital oedema self-report tool emerged. This has led to creation and testing of the Lower Limb and Genital Lymphoedema Questionnaire for Men (LLGLQ). Dr. Rhian Noble-Jones has enlisted the help of colleagues in other countries to assist in rolling out the tool to a larger population.

Call-to-action

Dr Rhian Noble-Jones would like to contact therapists in Australia when they have used the LLGLQ to discuss their experience. In short,

• Did it help the men ‘tell it as it is’?
• Will you ‘tell it as it is’? Did it reveal more information or greater understanding than previous assessments of this patient group? Did you use it for review as well as initial assessment?

Method

The development of the initial patient self-administered screening tool, the Lymphoedema Genito-Urinary Cancer Questionnaire (LGUCQ) involved two pieces of work. The first in Scotland (2013-4), the second in Wales (2017-8). The development of the generic non-cancer-related Lower Limb and Genital Lymphoedema Questionnaire (LLGLQ) emerged from the Wales project.

The Glasgow study involved two phases to incorporate the existing evidence in the literature with the views of patients and subject specialists (in both lymphoedema and urology) into the design of a self-report tool.

The Glasgow first phase comprised a review of published and unpublished literature to identify pre-existing assessment tools and to evidence the relevant to symptoms of lymphoedema. The electronic data bases used for the initial literature search were Medline, CINAHL,EMBASE, Pedro and the collection of databases EBSCO Health Source: Nursing/Academic Edition. In this first wave the searches were limited to 2002 – 2013 and English Language publications. The search was then expanded through a hand search and a call out through national and international special interest groups in lymphoedema and in urology for grey literature. A content analysis of existing tools was then performed to assess their relevance and utility to potential symptoms of genitourinary lymphoedema. This provided the foundation for the first iteration of the LGUCQ which then underwent refinement with the research team comprising a lymphoedema specialist, an experienced researcher and two consultant urologists.

The second Glasgow phase comprised sending the first iteration of the LGUCQ to a purposive sample of lymphoedema specialists, consultant urologists and male genitourinary cancer survivors within four Scottish Health Boards, incorporating all three Managed Clinical Networks for Genitourinary Cancer in Scotland. The patient participants included men who were living with a diagnosis of genitourinary related lymphoedema, and some who had no identified lymphoedema. A diagnosis of lymphoedema was based on a persistence of swelling beyond the stage of post-operative/treatment oedema and in the absence of other local or central causes of oedema.

A series of individual semi-structured face-to-face or telephone interviews were conducted with the practitioners and patients by one researcher (RN-J). Participants’ views were sought on the first iteration of the LGUCQ in relation to the comprehensiveness and relevance of its content, ease of understanding and perceived acceptability to patients. In addition the patients with lymphoedema were asked about their experiences in relation to the initial identification of their condition.

Data analysis was undertaken independently by two researcher/academics. The findings were then used to inform the construction of the subsequent iteration of the LGUCQ.

The Lymphoedema Network Wales project and study

Using a similar model to the Glasgow study and the same chief investigator (RN-J). The project had two aspects, the first being the ‘Pragmatic Development of the LGUCQ in clinical settings’ (urology, oncology and lymphoedema); the second aspect being a qualitative study exploring whether the use of this 2-sided self-report tool would help facilitate disclosure of persistent oedema in men at risk of lymphoedema. Greater details of this part of the study will be formally presented and published later this year.

The inclusion criteria of the men were made very specific to those known to at risk from the literature and from the experience of senior urologists, oncologists and expert lymphoedema specialists in the study steering group.
As in the Glasgow study, health professionals and patients were interviewed and their views informed recommendations regarding the adoption into standard practice of the LGUCQ and then the development of it’s non-cancer counterpart the LLGLQ.

Ethical approval

Approval for the initial development was given by the College of Medical, Veterinary & Life Sciences Ethics Committee for Non-Clinical Research Involving Human Subjects. In addition the study was registered with the clinical governance/effectiveness bodies of four health boards, Greater Glasgow & Clyde, Highland, Lothian and Tayside.

Subsequently, approval for further development of the LGUCQ was given by regional health boards, and the qualitative study regarding facilitating symptom disclosure was approved by NHS Research Ethics Committee and registered with Research Wales.

Funding

Funding for the development of the Glasgow LGUCQ study was provided by the Lymphoedema Research Fund (UK) and the British Lymphology Society (Research Fund Award). Funding for the Wales project was received from Tenovus Cancer Care.

References

Bullen, K., Edwards, S., Marke, V., Matthews, S., Looking past the obvious: experiences of altered masculinity in penile cancer. Psycho-Oncology 2010; 19: 933–940

Carter, J., Raviv, L., Appollo, K., Baser, R.E., Iasonos, A., Barakat, R.R., A pilot study using the Gynecologic Cancer Lymphedema Questionnaire (GCLQ) as a clinical care tool to identify lower extremity lymphedema in gynecologic cancer survivors. Gynecologic Oncology 2010; 117(2): 317-323

Noble-Jones, R., Fitzpatrick, B., Sneddon, MC., Hendry, DS., Leung, HY., Development of the Lymphoedema Genito-Urinary Cancer Questionnaire. British Journal of Nursing 2014; 23(18): S14-S19.

Sampurno F., Ruseckaite R., Millar JL., M. Evans SM., Comparison of Patient-Reported Quality-of-Life and Complications in Men With Prostate Cancer, Between Two Modes of Administration. Clinical Genitourinary Cancer, 2016; Vol. 14, No. 4, 284-9

Yost KJ, Cheville AL, Weaver AL, Hilli MA, Dowdy SC., Development and validation of a self-report lower-extremity lymphedema screening questionnaire for women. Physical Therapy 2013; published online 3jan2013, doi: 10.2522/ptj.20120088