Persistence of unmet need for care among people with systemic lupus erythematosus: a longitudinal study
The extent and variability of unmet care needs over time of people with systemic lupus erythematosus (SLE) has not been previously reported. A prospective study was undertaken to determine the variability over time of such needs.
A 97-item SLE needs questionnaire (SLENQ) was completed on two occasions 6 months apart by 233 members of a lupus support association. Levels of unmet need for each individual, and a mean symptom score were calculated.
Overall level of unmet need increased, decreased or stayed the same for 18%, 37%, and 45% of participants respectively. Ninety-four percent of participants at time 1 and 95% of participants at time 2 reported an unmet need for care for at least one item. The prevalence of unmet need for care remained the same for 82 of the 97 items. The mean unmet need score declined significantly between time 1 (0.78) and time 2 (0.69). The mean unmet need scores were significantly correlated with mean symptom score.
The results of the study suggest an unacceptable persistence of care needs not being met. There is an ongoing need to identify mechanisms to enhance care delivery so that the care needs of people with SLE are more effectively addressed.
KeywordsDisease activity Longitudinal study Needs assessment Needs questionnaire Systemic lupus erythematosus
Systemic lupus erythematosus
Systemic lupus erythematosus needs questionnaire
Quality of life
The authors wish to thank the members and staff of the Lupus Association of NSW for their ongoing and generous assistance during the many phases of this project. This paper was prepared with infrastructure support from the Hunter Medical Research Institute.
- 1.Swaak, A. J. G., van den Brink, H. G., Smeenk, R. J. T., Manger, K., Kalden, J. R., Tosi, S., et al. (1999). Systemic lupus erythematosus: clinical features in patients with a disease duration of over 10 years, first evaluation. Rheumatology, 38, 953–958. doi: 10.1093/rheumatology/38.10.953.PubMedCrossRefGoogle Scholar
- 8.Abrass, C. K., Nies, K. M., Louie, J. S., Border, W. A., & Glassock, R. J. (1980). Correlation and predictive accuracy of circulating immune complexes with disease activity in patients with systemic lupus erythematosus. Arthritis and Rheumatism, 23, 273–282. doi: 10.1002/art.1780230302.PubMedCrossRefGoogle Scholar
- 11.Rainbird, K. (1999). Measuring the perceived needs of patients with advanced, incurable cancer: towards evidenced based care of the dying. Dissertation, University of NewcastleGoogle Scholar
- 12.Browall, M., Carlsson, M., & Horvath, G. (2004). Information needs of women with recently diagnosed ovarian cancer—a longitudinal study. European Journal of Oncology Nursing: The Official Journal of European Oncology Nursing Society, 8, 200–207.Google Scholar
- 13.McCracken, L. M., Semenchuk, E. M., & Goetsch, V. L. (1995). Cross-sectional and longitudinal analyses of coping responses and health status in persons with systemic lupus erythematosus. Behavioral Medicine, 1995(20), 179–187.Google Scholar
- 14.Sutcliffe, N., Clarke, A. E., Levinton, C., Frost, C., Gordon, C., & Isenberg, D. A. (1999). Associates of health status in patients with systemic lupus erythematosus. The Journal of Rheumatology, 11(26), 2352–2356.Google Scholar
- 15.Moses, N., Wiggers, J., Cockburn, J., & Nicholas, C. (2007). Development and psychometric analysis of the systemic lupus erythematosus needs questionnaire (SLENQ). Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 16, 461–466.Google Scholar
- 17.Stein, H., Walters, K., Dillon, A., & Schulzer., M. (1980). Systemic lupus erythematosus—a medical and social profile. The Journal of Rheumatology, 13, 570–576.Google Scholar
- 18.Wallace, D. (1995). The lupus book. New York: Oxford University Press.Google Scholar
- 32.Australian Bureau of Statistics. (2002). 2001 Census community profile: New South Wales. Canberra: ABS.Google Scholar
- 35.Gustafson, D. (1991). Expanding on the role of patient as consumer. QRB, October, pp. 324–325Google Scholar