Cindy Mendelson

The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context

Introduction Psychosocial 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 analysis SPIN 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 dissemination The 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.

Creating Healthy Environments: Household-Based Health Behaviors of Contemporary Mexican American Women

This article describes the household-based health behaviors of a sample of contemporary Mexican American women.¹ Using the Household Production of Health (HHPH) as a conceptual framework and ethnographic methods of inquiry, 13 moderately to highly acculturated women of Mexican ancestry participated in multiple interviews about their health beliefs and household health behaviors. This article examines the findings related to the following research question: What are the health-producing and help-seeking behaviors (proximate determinants of health) used by Mexican American women to produce health? Themes focusing on creating healthy environments and treating illness are discussed. Awareness of the activities that women use to create and support household health can enhance the practice of nurses interested in supporting womens health work and improving health outcomes in the Mexican American community.

Diagnosis: A Liminal State for Women Living With Lupus

Women with systemic lupus erythematosus (SLE or lupus) often experience a protracted diagnostic period in which their symptoms are treated as medically unexplained. Although they know they are ill, their symptoms have not been validated as indicative of disease by a health care professional. Consequently, the diagnostic period can be viewed as liminal, the middle stage in the rites of passage and what Turner (1969/1997) has labeled “betwixt and between.” Drawing on the analysis of narratives solicited from 23 women recruited from online lupus support groups, I explore the gendered nature of diagnosis for women with lupus using van Genneps (1960) rites of passage as a conceptual framework.

Become your own advocate: Advice from women living with scleroderma

Purpose. Systemic sclerosis (SSC) affects 300,000 people in the USA and has a significant effect on an individuals functional ability. The purpose of this study was to outline the key components of living with the illness and to identify the information that those who are newly diagnosed would need to initiate a successful course of disease self-management. The results will provide the groundwork for development and testing of a self-paced education program for patients with SSC. Method. Focus groups were conducted with 11 women diagnosed with SSC. Results. Analysis of the transcripts yielded three themes, Secure Effective Medical Management, Live Your Life, and Learn Everything You Can. The thread Become Your Own Advocate wove these three themes together and illustrated that taking control of SSC is ultimately a function of self-advocacy. Conclusion. For patients with SSC, taking control of their illness was a necessary component of maintaining the highest quality of life possible. A positive attitude, a strong support system, a commitment to moving forward with life, and access to high-quality, timely information all provided the participants with the tools to develop and implement a strategy of self-advocacy in disease management.

Taking Charge of Systemic Sclerosis: A Pilot Study to Assess the Effectiveness of an Internet Self‐Management Program

To assess the effects of an internet self‐management program for systemic sclerosis on self‐efficacy, health efficacy, and management of care, pain, fatigue, functional ability, and depression.

Factors related to self-efficacy in persons with scleroderma.

PURPOSE  Scleroderma (SSc) is rare, and few studies have examined self-efficacy in persons with the disease. Self-efficacy is one precursor that has been shown to initiate changes in behaviour when managing chronic disease. The objective of this study was to explore the levels of self-efficacy in persons with SSc, compare self-efficacy in persons with limited or diffuse SSc and determine correlations between self-efficacy, physical function and psychological variables. METHODS  Sixty-two participants with SSc completed measures assessing self-efficacy, depression, fatigue, pain, hand function and activity limitations. The mean age of participants was 52.9 years. The mean educational level was 15.8 years. Sixty-seven per cent were married and 87.1% were women. Thirty participants had diffuse SSc, 27 had limited SSc and five were unclassified. RESULTS  The only significant differences between the two disease subtypes were in hand function and self-efficacy function subscale scores. Total self-efficacy scores significantly correlated with marital status, employment, self-reported health, depression, functional ability, fatigue, pain and hand function. Similarly, self-efficacy function scale scores correlated significantly with employment, self-reported health, functional ability, pain and hand function. Self-efficacy pain scale scores correlated significantly with fatigability. The self-efficacy other scale scores correlated significantly with depression and fatigability. Participants with higher levels of pain and depression, more fatigue, more general disability and more hand disability had lower self-efficacy. CONCLUSION  Self-efficacy correlates with physical function and psychological variables, and could predict how patients manage their health. Self-efficacy may increase through participation in educational programmes focusing on self-management of these variables.

Evaluation of a mail-delivered, print-format, self-management program for persons with systemic sclerosis

Patient self-management programs usually require participants to attend group sessions, which can be difficult for individuals with mobility issues. In addition, many programs are not disease specific. The purpose of this study was to evaluate the effects of a mail-delivered self-management program for individuals with scleroderma (SSc). The program consisted of a workbook and exercise DVD that provided information on medical aspects of the disease, dysphagia, fatigue management, advocacy, activities of daily living, oral hygiene, skin and wound care, psychosocial changes, exercises, and other features of the condition. Participants provided feedback on the effects of the self-management program by responding to questions on demographic and six self-report questionnaires, keeping a health log, and participating in a program evaluation interview. A total of 49 participants completed the program and returned the postintervention questionnaires. Participants consistently reported that the program was easy to use. Depression, fatigue, and pain decreased, and hand function, self-efficacy for controlling pain, and self-efficacy “other” improved; however, the only statistically significant change was in self-efficacy for pain. This is the first study to develop and assess the effects of a mail-delivered format for self-management for people with SSc. A self-management program should help individuals with SSc develop self-management strategies to manage this complex disease and advocate for themselves to promote better health.

Experiencing work as a daily challenge: The case of scleroderma

OBJECTIVE Little is known about the physical and discretionary aspects of work that people with scleroderma (SSc) find difficult. This article describes the findings from a study that explored the challenges and adaptations made by individuals with SSc to continue to work. PARTICIPANTS Thirty-two employed individuals with SSc participated. Participants were predominantly women (82%), white (79%), and well educated (M = 16.9 years). The average age was 47.3 years, and 60.6% were married. Mean disease duration was 9.7 years, and 56.2% had diffuse SSc. Mean years on the job was 10.2 (SD ± 8.8), and 71.9% worked at least 35 hours per week. METHODS Participants engaged in a single structured interview about work-related challenges and adaptations. Content and thematic analysis was used to identify key themes across the interviews. RESULTS Employees with SSc experienced Work as a daily challenge. This central theme described the general work experience for most participants. Three subthemes described their specific experiences: The work environment: Opportunities, challenges, and accommodations; Career planning; and Supportive others. CONCLUSIONS The participants were anxious to find scenarios that allowed them to continue to work. Worksite accommodations and flexibility in scheduling can make the difference between working and disability.

Perceived parenting ability and systemic sclerosis.

OBJECTIVE The purpose of this study was to compare perceived parenting abilities in mothers with systemic sclerosis (SSc) based on the subtype of SSc and age group of their children, and to examine how the degree of pain, fatigue and functional ability relates to parenting ability. METHODS In this cross-sectional survey, 74 mothers with SSc, who had children aged 18 years or younger living at home with them, completed a series of questionnaires online or on paper. The questionnaires included the Parent Disability Index (PDI) and surveys regarding demographic information, pain (visual analogue scale), fatigue (Multidimensional Assessment of Fatigue) and functional ability (Health Assessment Questionnaire). RESULTS An analysis of variance revealed that the mean age of the mother (F(2,71)  = 7.9; p < 0.01), mean PDI score (F(2,68)  = 5.4; p < 0.01) and mean pain score (F(2,71)  = 4.0; p = 0.02) were each associated with the age group of the children. The univariate analysis of variance results showed that dichotomized pain (F(1,69)  = 13.3; p < 0.01), fatigue (F(1,69)  = 18.9; p < 0.01) and disability (F(1,69)  = 9.8; p < 0.01) were each associated with the PDI score. The multivariate analysis of variance results showed that dichotomized pain (F(1,68)  = 7.5; p < 0.01) and fatigue (F(1,68)  = 12.7; p < 0.01) were associated with the PDI. CONCLUSION Mothers with SSc report difficulty with parenting, which can be related to the severity of the symptoms. The findings suggest that interventions to reduce pain and fatigue may improve perceived parenting ability.

Mothers with Chronic Disease: A Comparison of Parenting in Mothers with Systemic Sclerosis and Systemic Lupus Erythematosus

This study compared parenting ability in mothers with systemic sclerosis (SSc) and systemic lupus erythematosus (SLE), two chronic, autoimmune, connective tissue diseases that primarily affect women. Seventy-four mothers with SSc and 68 mothers with SLE completed self-report questionnaires on demographic characteristics, pain, fatigue, occupational performance, and parenting. Results showed that mothers with SSc were slightly older, were more educated, and had decreased occupational performance. Mothers with SLE had more pain and fatigue. There were no significant differences between mothers with SSc and SLE who had children 5 years of age and younger. However, there were significant differences between the mothers with SSc and SLE who had children aged 6 to 18 years on four items on the Parenting Disability Index: playing games with child, getting up with child during the night, keeping child out of unsafe situations, and helping child solve personal/social problems. These differences may be due to differences in the levels of pain, fatigue, and occupational performance, possibly stemming from differences in disease manifestations.