Development of the Lymphoedema Genito-Urinary Cancer Questionnaire

Noble-Jones, Rhian; Fitzpatrick, Bridie; Sneddon, Margaret; Hendry, David; Leung, Hing Y.

doi:10.12968/bjon.2014.23.sup18.s14

Cited by 12 publications

(14 citation statements)

References 23 publications

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“…Lymphedema is either primary or secondary in nature (McWayne & Heiney, 2005; Murdaca et al, 2012; Noble-Jones et al, 2014). Primary lymphedema is a clinical manifestation of a defect in the lymph vessels or nodes and, based on the age of symptom onset and clinical manifestation(Kerchner, Fleischer, & Yosipovitch, 2008; Murdaca et al, 2012).…”

Section: Primary and Secondary Lymphedemamentioning

confidence: 99%

A Comparison of the Quality of Life in Patients With Primary and Secondary Lower Limb Lymphedema

2016

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Patients with lower-limb lymphedema experience symptoms that may differ in intensity and distress. This mixed-methods study compares symptom intensity and distress and the impact of lymphedema on patients’ quality of life by primary and secondary (cancer and non-cancer) lymphedema groups. Individuals completed an online questionnaire (i.e., demographic form, Lymphedema Symptom Intensity and Distress Survey-Leg, and an open-ended question). Analyses included descriptive and inferential statistics (quantitative data) and content analysis (qualitative data). Participants differed statistically significantly by gender, employment status, and lymphedema location. Groups differed significantly in lack of self-confidence (χ2(df=2) =9.19; p=.010). Cancer patients reported higher intensity and distress scores for some symptoms, but these differences were not statistically significant. Patients reported lacking psychosocial well-being and resources and experiencing physical and functional impairments and treatment and care challenges. Patients with lower-limb lymphedema experience psychosocial impairments and problems with quality of and access to care.

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Section: Primary and Secondary Lymphedemamentioning

confidence: 99%

A Comparison of the Quality of Life in Patients With Primary and Secondary Lower Limb Lymphedema

2016

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“…Although arguably no more cosmetically pleasing to wear on a permanent daily basis than previous hosiery, the ease of application, adjustability and option to combine with existing compression garments have proved popular with nurses and patients alike. With increasing recognition that lymphoedema is not just a female problem (Noble-Jones et al 2014;Cooper 2015) the wraps' similarity to an orthopaedic splint gives a high rate of acceptability among male patients in our experience.…”

mentioning

confidence: 80%

Compression moves on: advances in care are changing practice

Noble-Jones

2016

Br J Nurs

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“…The lack of understanding of the experiences of men with lymphoedema post-genitourinary cancer led to the development of the Lymphoedema Genitourinary Cancer Questionnaire (LGUCQ). 20 A collaborative development between uro-oncology, lymphoedema specialists and male patients (both with and without lymphoedema) initiated a simple two-sided tool aimed to facilitate self-reporting of symptoms and difficulties associated with lymphoedema. Related pilot work suggests that written self-report tools enable men to disclose more sensitive information than they would verbally.…”

Section: Introductionmentioning

confidence: 99%

The Lymphoedema Genitourinary Cancer Questionnaire in urology follow‐up clinics

Noble-Jones

Thomas

Bose

2018

Int J of Uro Nursing

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Is the Lymphoedema Genitourinary Cancer Questionnaire (LGUCQ) useful to men treated for genitourinary cancer through facilitating symptom disclosure? Lymphoedema can be debilitating and progressive and its association with bladder, prostate, testicular and penile cancer, either as a consequence of treatment or progressive disease is well recognized. However, lymphoedema is generally unrecognized during follow‐up. Research on genitourinary cancer‐related lymphoedema is sparse with a lack of reliable prevalence figures. A lack of empirical understanding of the experiences of these men led to the development of the LGUCQ, a simple two‐sided tool to facilitate self‐reporting of symptoms and difficulties associated with lymphoedema. Related pilot work suggests that written self‐report tools enable men to disclose more sensitive information than they would verbally. However, the LGUCQ had not been formally evaluated in an uro‐oncology department to identify the benefits from the perspective of the patients and health professionals. Thematic analysis of completed LGUCQs and interviews with patients and staff were performed. Emergent themes included the perceived barriers to symptom disclosure, the LGUCQ as facilitator and pragmatic addition, the support needs of patients and health professionals and refinements required for roll out. Issues limiting identification of lymphoedema within uro‐oncology services existed. Findings suggest the inclusion of the LGUCQ within uro‐oncology clinics could lead to earlier identification of lymphoedema. Patients could identify genital oedema problems with the LGUCQ increasing prompt and accurate disclosure and normalizing the experience.

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Development of the Lymphoedema Genito-Urinary Cancer Questionnaire

Cited by 12 publications

References 23 publications

A Comparison of the Quality of Life in Patients With Primary and Secondary Lower Limb Lymphedema

A Comparison of the Quality of Life in Patients With Primary and Secondary Lower Limb Lymphedema

Compression moves on: advances in care are changing practice

The Lymphoedema Genitourinary Cancer Questionnaire in urology follow‐up clinics

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