Prevalence and correlates of perceived unmet needs of people with systemic lupus erythematosus

Patient Educ Couns. 2005 Apr;57(1):30-8. doi: 10.1016/j.pec.2004.03.015.


To assess the prevalence and correlates of perceived unmet need among people with systemic lupus erythematosus (SLE) 386 people with SLE, recruited from a support association in NSW, Australia, completed a mail-back survey that included 97 items measuring perceived unmet needs across seven domains: physical, daily living, psychological/spiritual/existential, health services, health information, social support and employment/financial. Ninety-four percent of participants had at least one unmet need. The highest levels of unmet need were tiredness (81%); pain (73%); not being able to do things one used to (72%); fear of exacerbation (72%); sleeping problems (70%); anxiety and stress (69%); and feeling down (68%). Five of the highest levels of unmet needs were in the psychological domain. Researchers concluded that current health care delivery is not adequately meeting some of the needs of people with SLE. A comprehensive needs assessment questionnaire for all SLE patients could help providers manage protocols more effectively.

MeSH terms

  • Activities of Daily Living
  • Adaptation, Psychological
  • Adult
  • Anxiety / etiology
  • Attitude to Health*
  • Cross-Sectional Studies
  • Depression / etiology
  • Factor Analysis, Statistical
  • Fear
  • Female
  • Health Care Surveys
  • Humans
  • Life Style
  • Lupus Erythematosus, Systemic / complications
  • Lupus Erythematosus, Systemic / psychology*
  • Lupus Erythematosus, Systemic / therapy
  • Male
  • Middle Aged
  • Needs Assessment*
  • New South Wales
  • Pain / etiology
  • Patient Education as Topic / standards
  • Prevalence
  • Sleep Wake Disorders / etiology
  • Social Support
  • Stress, Psychological / etiology
  • Surveys and Questionnaires