IntroductionPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.Methods and analysisSPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500–2000 patients from centres across the world within a period of 5 years (2013–2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.Ethics and disseminationThe use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

Systemic lupus erythematosus is a systemic autoimmune illness that affects women more frequently than men and disproportionately affects women of color. Because so little is known about living with lupus, the author undertook a qualitative study to identify salient aspects of affected women's daily experiences. Seven women with lupus participated in three interviews, each separated by 1 month, and they also maintained a daily symptom journal. In addition, 23 women recruited from the Internet submitted narrative accounts of their experiences of living with lupus. Analysis of the findings suggests that living with lupus involves managing a medically and socially complex life. The complexity of life with lupus is dimensionalized by the overlapping themes, identified as a life of uncertainty, a shifting sense of identity, and managing the financial burden of illness.

This article describes the health perceptions of a sample of moderately to highly acculturated Mexican American women. Using an ethnographic design, the author interviewed 13 women to determine their health perceptions. The interviews were guided by the domains of health described in the World Health Organization (WHO) definition of health. Three broad categories of health perceptions were identified: the physical body, the emotional component, and finding balance. With the addition of a spiritual component, the WHO definition was a useful tool for uncovering health perceptions. The process of in-depth ethnographic interviewing provided a contextual view of health in which the complexity of intrafamilial relationships was revealed, as were the importance of spirituality as a coping mechanism and the perception of health as an integrated, holistic experience.

Mothers with scleroderma have difficulty with aspects of motherhood. The findings that pain, fatigue, and activity limitations were related to mothering suggest areas for occupational therapy intervention.

These findings from this pilot study suggest that a self-management program delivered using an internet format can lead to statistically significant changes in health efficacy and management of care, fatigue, and depression. These results need to be confirmed with a larger randomized controlled trial with a longer followup period.