Impact of systemic lupus erythematosus on health, family, and work: the patient perspective.

OBJECTIVE: Qualitative research among patients with systemic lupus erythematosus (SLE) can identify aspects of the disease relevant to clinical research and practice. A phenomenological, mixed-method approach was used to investigate these disease-driven health issues. METHODS: A convenience sample of patients with SLE from Los Angeles County, California was recruited from a private, community-based rheumatology practice for participation in focus groups and interviews. Semistructured discussions explored disease manifestations and impact. A self-administered questionnaire evaluated the occurrence and importance of disease issues previously identified from literature. Patient health issues were identified through convergence using 1) qualitative analysis of focus group transcripts and 2) quantitative analysis of the questionnaire. Patients were also asked about their ability to accurately recall disease experiences. RESULTS: Focus group participants (n = 23) had a mean age of 43 years and a mean disease duration of 8 years; 19 (83%) were women and 14 (61%) were white. The most frequent health issues identified by focus group transcript analysis were pain (83%), fatigue (61%), work or school impairment (48%), skin manifestations (43%), and skin sensitivity (43%). Questionnaire findings were similar: the most frequent health issues were inability to do previous activities (87%), fatigue (87%), pain (87%), and work or school impairment (83%). Most interviewed patients (7 of 10) reported an ability to accurately recall disease issues between 24 hours and 7 days. CONCLUSION: SLE patients reported signs and symptoms that could significantly impact their functioning in daily life. Treatments that substantially improve these disease manifestations would offer considerable benefit to patients, treating physicians, and general society.

Evidence-based recommendations for prevention of human immunodeficiency virus and sexually transmitted infections in the Angolan Armed Forces: challenges and opportunities at the end of 30 years of war.

OBJECTIVE: The goal was the development of culturally sensitive, evidence-based recommendations for human immunodeficiency virus (HIV) prevention for Angolan soldiers. METHODS: Eight focus groups (N = 68) were conducted with Angolan soldiers in 2002. Qualitative data were analyzed for soldiers' HIV/sexually transmitted infections (STIs)-related knowledge and behaviors. RESULTS: More than 37% of participants reported having more than one sexual partner at the time of the study. Many soldiers had little knowledge regarding HIV/STI transmission and symptoms, and most did not use condoms. Soldiers identified the following factors that need to be addressed in HIV/STI prevention campaigns among military personnel: lack of HIV awareness and knowledge, limited condom availability and use, heavy alcohol use before sex, and the tendency to have multiple sexual partners. CONCLUSIONS: Recommendations for prevention in the Angolan military are presented. A multifaceted HIV prevention program for the Angolan military that addresses informational, interpersonal, and system-level barriers must be implemented now.

Protecting our militaries: a systematic literature review of military human immunodeficiency virus/acquired immunodeficiency syndrome prevention programs worldwide.

OBJECTIVES: To systematically review published studies of human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) prevention programs targeting the world's military populations. METHODS: We systematically searched eight electronic databases (publications from 1983 to February 2005) and hand-searched the bibliographies of HIV/AIDS prevention reviews to identify evaluative studies of HIV/AIDS prevention interventions for military personnel. RESULTS: Five hundred eighty-four abstracts were identified, of which eight met formal acceptance criteria. Four prevention interventions were identified, with each reporting a positive intervention effect on one or more of the following outcomes: increasing soldiers' knowledge of HIV/AIDS, willingness to engage in preventive behaviors, changing their attitudes toward greater compliance with prevention guidelines, and HIV/AIDS incidence and prevalence. CONCLUSIONS: Published interventions to reduce the risk of HIV/AIDS among military personnel are effective under certain conditions and with a limited number of populations. We discuss problems inherent in such research and make recommendations to improve the development, evaluation, and dissemination of findings of comprehensive HIV/AIDS prevention programs among military populations.

The use of rheumatoid arthritis health-related quality of life patient questionnaires in clinical practice: lessons learned.

OBJECTIVE: The utilization of health-related quality of life (HRQOL) patient questionnaires by clinical rheumatologists is limited. Yet, considerable literature exists defining the value of such data. In an effort to understand this apparent paradox, we performed a literature review and conducted a survey to describe what has been learned over the past 2 decades concerning the use of these measures in clinical care and explore the reasons for their underutilization. METHODS: A panel of rheumatologists with extensive clinical experience was convened to review the relevant literature pertaining to the use of HRQOL patient instruments in clinical practice. Additionally, a survey of all American College of Rheumatology practicing clinicians was conducted to assess the use of and beliefs about these measures. RESULTS: The literature provided evidence to support the use of HRQOL patient measures in clinical practice. Forty-seven percent of the responding rheumatologists stated that none of their patients complete HRQOL patient questionnaires. The majority of respondents (63%) reported that such information is "somewhat valuable." The most frequently reported reason for the underutilization was that such instruments "require too much staff time." CONCLUSIONS: The literature supports the potential value of HRQOL patient questionnaires in clinical practice. Few rheumatologists routinely gather such information as part of patient care. Reasons for this discrepancy between utility and use are given along with recommendations intended to help increase their utilization in clinical care.

Development of a new instrument for rheumatoid arthritis: the Cedars-Sinai Health-Related Quality of Life instrument (CSHQ-RA).

OBJECTIVE: To update and complement existing instruments, we developed a multidimensional disease-specific instrument, intended to reflect the impact of rheumatoid arthritis (RA) with modern treatment options on patient's Health-Related Quality of Life (HRQOL). METHODS: Items were developed from a systematic review of published HRQOL measures and transcripts of RA patient focus groups. Items were refined by an expert panel and administered to 350 patients for psychometric testing. RESULTS: The systematic review identified 228 potential items, and the focus group transcripts identified 96 additional items. Expert review and pilot testing resulted in an initial 58-item instrument. Twenty-six items were excluded due to floor/ceiling effects, poor response rates, or high item-item correlations. Factor analysis identified a 5-factor structure (eigenvalues >or=1). Multi-trait scaling performed on both completed surveys confirmed the 5 sub-scale structure (Cronbach's > 0.87). CONCLUSION: The CSHQ-RA consists of 33 items that address 5 HRQOL domains, each with high internal consistency. Additional testing will assess the instrument's validity and responsiveness.