Cost-effectiveness of a peer mentoring intervention to improve disease self-management practices and self-efficacy among African American women with systemic lupus erythematosus: analysis of the Peer Approaches to Lupus Self-management (PALS) pilot study.

OBJECTIVE: The Peer Approaches to Lupus Self-management (PALS) program was developed as a peer mentoring tool to improve health behaviors, beliefs, and outcomes in African American women with systemic lupus erythematosus (SLE). This study aims to assess the cost of the PALS intervention and determine its effectiveness when compared to existing treatments. METHODS: Peer mentors and mentees were paired on shared criteria such as life stage, marital status, or whether they were mothers. This 12-week program consisted of a weekly peer mentoring session by telephone. Cost of healthcare utilization was evaluated by assessing the healthcare costs pre- and post-intervention. Validated measures of quality of life, self-management, disease activity, depression, and anxiety were collected. Total direct program costs per participant were totaled and used to determine average per unit improvement in outcome measures. The benefit-cost ratio and pre- versus post-intervention hospital charges were examined. RESULTS: A total of 20 mentees and 7 mentors were enrolled in the PALS program. All PALS pairs completed 12 sessions lasting an average of 54 minutes. Mentees reported statistically significant decreases in patient-reported disease activity, depression, and anxiety, with improved trends in patient activation or patient engagement in their disease and management. The total cost per patient was $1291.50, which was $107.62 per patient per week. There was a savings of $23,417 per individual receiving the intervention with a benefit-cost ratio of 18.13 per patient. CONCLUSION: These findings suggest that the PALS intervention was effective in improving patient-level factors and was cost-effective. Future research will need to validate these findings in a larger sample.

Lupus-specific health outcome measure for US patients: the LupusQoL-US version.

BACKGROUND: Patient-reported outcomes are valuable for the management of chronic diseases like systematic lupus erythematosus (SLE), but no measures have been validated for use in US-based patients with SLE. OBJECTIVES: To adapt and assess the validity and reliability of an SLE-specific quality of life (QoL) measure developed in the United Kingdom, the LupusQoL, for use in US-based patients with SLE. METHODS: Debriefing interviews of subjects with SLE guided the language modifications of the tool. The LupusQoL-US, SF-36 and EQ5D were administered. Internal consistency (ICR) and test-retest (TRT) reliability, convergent and discriminative validity were examined. Factor analyses were performed. RESULTS: The mean (SD) age of the 185 subjects with SLE was 42.5 (12.9) years. ICR and TRT of the eight domains ranged from 0.85 to 0.94 and 0.68 to 0.92, respectively. Related domains on the SF-36 correlated with the LupusQoL domains (physical health and physical function r = 0.73, physical health and role physical r = 0.57, emotional health and mental health r = 0.72, emotional health and role emotional r = 0.48, pain and bodily pain r = 0.66, fatigue and vitality r = 0.70, planning and social functioning r = 0.58). Most LupusQoL-US domains could discriminate between subjects with varied disease activity and damage. Principal component analysis disclosed five factors in the US version, with physical function, pain and planning items loading on one factor. CONCLUSIONS: These data provide evidence to support the psychometric properties of the LupusQoL-US, suggesting its utility as an assessment tool for patients with SLE in the USA.

The differential effect of child age on the illness intrusiveness--parent distress relationship in juvenile rheumatic disease.

OBJECTIVE: Examine age-related patterns of association between parent-reported illness intrusiveness and parent distress in parents of youth with juvenile rheumatic diseases (JRDs). STUDY DESIGN: Cross-sectional multiple regression analysis tested child age as a moderator in the illness intrusiveness-distress relationship. PARTICIPANTS: Fifty-two parents of children ages 9-17 diagnosed with JRD. MAIN OUTCOME MEASURES: The Illness Intrusiveness Scale--Parent Version and the Brief Symptom Inventory. RESULTS: Parent-reported illness intrusiveness demonstrated a significant main effect on distress for all parents in the sample. This was qualified by an Illness Intrusiveness x Child Age interaction. Illness intrusiveness was found to be significantly related to distress among parents of older youth, but was only marginally related to distress for parents of younger children. CONCLUSIONS: Results are consistent with family life cycle development models of adjustment to childhood chronic illness. The clinical implications of the findings are also discussed.

The development of the L-QoL: a quality-of-life instrument specific to systemic lupus erythematosus.

OBJECTIVES: Complex diseases, such as systemic lupus erythematosus (SLE), present dilemmas over choice of outcome measures. Using a battery of instruments to capture the impact of different impairments or activity limitations experienced does not provide assessment of the wider impact on quality of life (QoL). This paper describes the development and testing of a new instrument to measure QoL in systemic lupus erythematosus (L-QoL). METHODS: The development combines theoretical strengths of the needs-based QoL model with statistical and diagnostic powers of the Rasch model. Content was derived from in-depth interviews with relevant patients. Cognitive debriefing interviews assessed face and content validity. Rasch analysis was applied to data from an initial postal survey to remove misfitting items. A second postal survey assessed scaling properties, reliability, internal consistency and validity. RESULTS: A 55-item questionnaire was derived from interview transcripts. Cognitive debriefing confirmed acceptability. Rasch analysis of postal survey data (n = 95) removed misfitting items. A second postal survey (n = 93), produced a 25-item version with good item fit and stability, excellent test-retest reliability (0.92), internal consistency (0.92) and strict unidimensionality. CONCLUSIONS: It is concluded that the L-QoL should prove a valuable instrument for assessing patient-based outcome in clinical trials and practice.

Inter-hospital transfers of patients with systemic lupus erythematosus: characteristics, predictors, and outcomes.

OBJECTIVE: To describe the reasons for inter-hospital transfers of patients with systemic lupus erythematosus (SLE), to identify predictors of transfers, and to compare the risk of in-hospital mortality between patients who were transferred and those not transferred. METHODS: Data on acute care hospitalizations of patients with SLE in New York and Pennsylvania in 2000-2002 were obtained from state health planning agencies. We identified inter-hospital transfers from discharge and admission codes, and categorized the major reason for transfer (rehabilitation, procedure, or continued medical care). Patient and hospital characteristics were examined as predictors of transfers. We used a matched cohort design with propensity adjustment to compare in-hospital mortality between patients transferred for continued medical care and those who were not transferred. RESULTS: We identified 533 inter-hospital transfers in 490 patients, 524 of which involved one transfer per hospitalization episode. Of these 524 transfers, 122 (23.3%) were for rehabilitation, 158 (30.1%) were for procedures, and 244 (46.6%) were for continued medical care. Patient characteristics and transfer destinations varied among these groups. Transfers for continued medical care were more common among younger patients, those who were more severely ill, had an emergency or urgent admission, or were hospitalized in a smaller, rural or non-teaching hospital, or in Pennsylvania, and were less common among those at proprietary hospitals. In the matched cohort analysis, the risk of in-hospital mortality was 2.25 times higher (95% confidence interval 1.31, 3.85; p = 0.004) among those transferred compared with those who were not transferred. This risk differed with the experience of the attending physician at the receiving hospital: among patients of physicians who treated 3 or fewer patients with SLE per year, this risk was 2.5 times higher (95% CI 1.42, 4.36; p = 0.002), while among patients of physicians who treated more than 3 patients with SLE per year, this risk was 0.56 times (95% CI 0.06, 5.12; p = 0.62) that of matched controls. CONCLUSION: Patient and transferring hospital characteristics vary with the reason for transfer. Transfers for continued medical care are associated with higher risks of in-hospital mortality, but these risks may differ with the SLE-related experience of the attending physician at the receiving hospital.

Counterbalancing patient demands with evidence: results from a pan-Canadian randomized clinical trial of brief supportive-expressive group psychotherapy for women with systemic lupus erythematosus.

OBJECTIVE: To evaluate the effect of Brief Supportive-Expressive Group Psychotherapy as an adjunct to standard medical care in reducing psychological distress, medical symptoms, and health care costs and improving quality of life in women with systemic lupus erythematosus (SLE). METHODS: A randomized clinical trial was conducted with 133 SLE female patients from 9 clinics across Canada. Clinical and psychosocial measures were taken at baseline, posttreatment, and 6 and 12 months posttreatment. Outcomes assessed were psychological distress, quality of life, disease activity, health service utilization, and diminished productivity. RESULTS: Intention-to-treat analyses revealed that there were no clinically important group differences on any of the outcome measures. CONCLUSION: Although both groups improved over time on several measures (e.g., decreases in psychological distress, stress, and emotion-oriented coping), these changes could not be attributed to the psychotherapeutic intervention. Thus, evidence does not support the referral of these patients to this type of intervention.