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Oral Abstracts (Session 4 of 5)
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Moderator: Cindy Felty, RN, CNP, CWS (Presentation 35.5) Evaluating health-related quality of life with lymphedema: a review of the literature Philip A. Morgan, RGN, BSc, MA, EdD; Peter J. Franks PhD; Christine J. Moffatt, RGN, DN, MA, PhD, Centre for Research and Implementation of Clinical Practice Faculty of Health and Human Sciences, Thames Valley University, London, United Kingdom Introduction: Lymphedema (LD) is a chronic swelling arising from failure of the lymphatic system. It can be grossly disfiguring, and although it usually affects the limbs, it may also affect the head, face, trunk, or genital area. Methods: A review of medical and nursing databases (Medline, Embase, and Cinahl) identified 6 qualitative studies, 1 disease-specific tool, 4 cross-sectional studies, and 8 longitudinal and outcome studies of health-related quality of life (HRQoL) in LD. Most of these related to lymphedema secondary to the treatment of breast cancer (BCRL). Review outcomes: Qualitative studies revealed a lack of understanding of lymphedema by health professionals and poor information given to patients. Emotional responses included shock and fear that the development of swelling indicated the return of the cancer and annoyance and frustration at the limitations that the swelling imposed on them. Negative body image and lack of confidence in their appearance was commonplace. Treatment led to costs in terms of time and disruption in lifestyle. Many women with BCRL found it more distressing than coping with the cancer itself. Quantitative studies have shown that patients with LD experienced greater levels of functional impairment, poorer psychological adjustment, and anxiety and depression than the general population. The increased limb volume associated with the swelling was also poorly related to impact of LD on patients. Factors that led to deficits in quality of life included the frequency of acute inflammatory episodes (AIE), presence of pain, skin quality, LD in the dominant hand, and reduced limb mobility. There was some evidence that the adoption of patient centered guidelines improved quality of life in patients with BCRL. Conclusions: HRQoL is an important outcome in the management of patients with LD. Further studies must examine how LD impacts patients other than those with BCRL and the consequences to patients of different approaches to care. References 1. Carter BJ. Women’s experiences of lymphedema. Oncol Nurs Forum. 1997;24(5):875–882. 2. Hare M. The lived experience of breast cancer-related lymphedema. Nurs Stand. 2000;15(7):35–39. 3. Launois R, Mègnigbêto A, leLay K, Alliot F. A specific quality of life scale in upper limb lymphedema: the ULL-27 questionnaire. Value Health. 2001;4(6):407–408. 4. McPherson T, Penzer R. A comparison of quality of life and disease severity in 54 patients with lymphedema in Guyana. Br J Dermatol. 2003;149:(Suppl 64):34. 5. Moffatt CJ, Franks PJ, Doherty DC, et al. Lymphedema: an underestimated health problem. Q J Med. 2003;96(10):731–738. 6. Pereira de Godoy JM, Braile DM, deFatima Godoy M, Longo O Jr. Quality of life and peripheral lymphedema. Lymphology. 2002;35(2):72–75. 7. Ryan M, Stainton MC, Jaconelli C, et al. The experience of lower limb lymphedema for women after treatment for gynecologic cancer. Oncol Nurs Forum. 2003;30(3):417–423. 8. Sitzia J, Sobrido L. Measurement of health-related quality of life of patients receiving conservative treatment for limb lymphedema using the Nottingham Health Profile. Qual Life Res. 1997;6(5):373–384. 9. Todd JE. Lymphedema: a challenge for all health care professionals. Int J Palliat Nurs. 1998;4(5):230–239. 10. Woods M. Patients’ perceptions of breast-cancer-related lymphedema. Eur J Cancer Care. 1993;2(3):125–128. |
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