Persistence of unmet need for care among people with systemic lupus erythematosus: a longitudinal study.
OBJECTIVE
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.


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
School of Medical Practice and Public Health, University of Newcastle, Locked Bag 10, Wallsend, Newcastle 2287, NSW, Australia. neta.moses@newcastle.edu.au
Neta
N
Moses
John
J
Wiggers
Craig
C
Nicholas
D000368:Aged; D005260:Female; D019538:Health Care Surveys; D006297:Health Services Accessibility; D006301:Health Services Needs and Demand; D006305:Health Status Indicators; D006801:Humans; D008137:Longitudinal Studies; D008180:Lupus Erythematosus, Systemic / Q000188:drug therapy* / Q000628:therapy; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D011446:Prospective Studies; D011795:Surveys and Questionnaires; D013997:Time Factors