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

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Abstract

Purpose

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.

Method

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.

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Abbreviations

SLE:

Systemic lupus erythematosus

SLENQ:

Systemic lupus erythematosus needs questionnaire

QOL:

Quality of life

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Acknowledgments

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.

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Authors and Affiliations

  1. School of Medical Practice and Public Health, University of Newcastle, Locked Bag 10, Wallsend, Newcastle, 2287, NSW, Australia

    Neta Moses

  2. Discipline of Health Behaviour Sciences, School of Medical Practice and Public Health, University of Newcastle, Newcastle, NSW, Australia

    John Wiggers

  3. Hunter New England Population Health, Wallsend, Newcastle, NSW, Australia

    Craig Nicholas

Authors
  1. Neta Moses
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  2. John Wiggers
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  3. Craig Nicholas
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Corresponding author

Correspondence to Neta Moses.

Additional information

This study was conducted with ethics approval from the University of Newcastle Hunter Research Ethics Committee (HREC: H6820499) and the Hunter Area Health Service–Hunter Area Human Ethics Committee (HAHREC: 9904213.17), and was performed in accordance with the ethical standards laid down in the 1964 Declaration of Helsinki.

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Moses, N., Wiggers, J. & Nicholas, C. Persistence of unmet need for care among people with systemic lupus erythematosus: a longitudinal study. Qual Life Res 17, 867–876 (2008). https://doi.org/10.1007/s11136-008-9361-2

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  • DOI: https://doi.org/10.1007/s11136-008-9361-2

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