Development of the American College of Rheumatology Patient-Reported Outcome Quality Measures for Systemic Lupus Erythematosus.

OBJECTIVE: As part of a Centers for Disease Control and Prevention-funded American College of Rheumatology (ACR) initiative, we sought to develop quality measures related to Patient Reported Outcome Measure (PROM) use for systemic lupus erythematosus (SLE) clinical care. METHODS: An expert workgroup composed of physician, patient, and researcher representatives convened to identify patient-reported outcome (PRO) domains of greatest importance to people with SLE. A patient advisory panel separately ranked domains. PROMs assessing priority domains were identified through structured literature review, and detailed psychometric reviews were conducted for each PROM. In a Delphi process, the expert workgroup rated PROMs on content validity, psychometric quality, feasibility of implementation, and importance for guiding patient self-management. The patient advisory panel reviewed PROMs in parallel and contributed to the final recommendations. RESULTS: Among relevant PRO domains, the workgroup and patient partners ranked depression, physical function, pain, cognition, and fatigue as high-priority domains. The workgroup recommended at least once yearly measurement for (1) assessment of depression using the Patient Health Questionnaire or Patient Reported Outcomes Measurement Information System (PROMIS) depression scales; (2) assessment of physical function using PROMIS physical function scales or the Multi-Dimensional Health Assessment Questionnaire; and (3) optional assessments of fatigue and cognition. Pain scales evaluated were not found to be sufficiently superior to what is already assessed in most SLE clinic visits. CONCLUSION: Expert workgroup members and patient partners recommend that clinicians assess depression and physical function at least once yearly in all people with SLE. Additional PROMs addressing cognition and fatigue can also be assessed. Next steps are to incorporate PROM-based quality measures into the ACR The Rheumatology Informatics System for Effectiveness registry.

Visual representations of single- and multi-sport participation in a youth swimming sample: Implications for definitions and discussions of early specialization.

Academic literature and sport policy documents have cited concerns about an increasing prevalence of early sport specialization, with associated burnout, dropout, and injury. However, evidence to support such statements is limited. Definitions of early specialization vary, but a common criterion is continued participation in a single sport, prior to adolescence. We explored the prevalence of single-sport participation and other patterns of sport involvement from ages 6-12 in a Canadian swimming sample using retrospective longitudinal methods. Parents of 236 competitive swimmers (ages 12-17) completed surveys on their children's sport backgrounds, including the number of sports participated in annually from age 6-12. A cluster heat map elucidated single- and multi-sport patterns over time. Mixed analyses of variance tested for differences by gender and club type. Fourteen percent of our sample showed stable participation in either one sport or multiple sports per year over time, 25% decreased their annual number of sports, and 60% increased. This trend of increasing, rather than decreasing the number of sports in their annual activity roster when approaching age 12 was particularly pronounced for girls. Only 10 participants (4% of the sample) consistently engaged in a single sport each year from age 6-12. Summer (seasonal) swimmers consistently did more sports than year-round swimmers. Overall, our findings showed highly idiosyncratic longitudinal patterns of sport participation that did not easily conform to current sport activity guidelines. We also found similar idiosyncrasy in an ad-hoc analysis of participants who had dropped out of swimming a year later. If single-sport participation is considered a key criterion for defining early specialization, our findings suggest the prevailing narrative around early specialization may be overstated in relation to the number of single-sport athletes. Alternatively, other components of early specialization may be more prevalent and deserving of attention due to possible associations with harmful outcomes.

Development of American College of Rheumatology Quality Measures for Systemic Lupus Erythematosus: A Modified Delphi Process With Rheumatology Informatics System for Effectiveness (RISE) Registry Data Review.

OBJECTIVE: We aimed to develop readily measurable digital quality measure statements for clinical care in systemic lupus erythematosus (SLE) using a multistep process guided by consensus methods. METHODS: Using a modified Delphi process, an American College of Rheumatology (ACR) workgroup of SLE experts reviewed all North American and European guidelines from 2000 to 2020 on treatment, monitoring, and phenotyping of patients with lupus. Workgroup members extracted quality constructs from guidelines, rated these by importance and feasibility, and generated evidence-based quality measure statements. The ACR Rheumatology Informatics System for Effectiveness (RISE) Registry was queried for measurement data availability. In 3 consecutive Delphi sessions, a multidisciplinary Delphi panel voted on the importance and feasibility of each statement. Proposed measures with consensus on feasibility and importance were ranked to identify the top 3 measures. RESULTS: Review of guidelines and distillation of 57 quality constructs resulted in 15 quality measure statements. Among these, 5 met high consensus for importance and feasibility, including 2 on treatment and 3 on laboratory monitoring measures. The 3 highest-ranked statements were recommended for further measure specification as SLE digital quality measures: 1) hydroxychloroquine use, 2) limiting glucocorticoid use >7.5 mg/day to <6 months, and 3) end-organ monitoring of kidney function and urine protein excretion at least every 6 months. CONCLUSION: The Delphi process selected 3 quality measures for SLE care on hydroxychloroquine, glucocorticoid reduction, and kidney monitoring. Next, measures will undergo specification and validity testing in RISE and US rheumatology practices as the foundation for national implementation and use in quality improvement programs.

The Relationship of Self-efficacy and Explicit and Implicit Associations on the Intention-Behavior Gap.

BACKGROUND: Recent physical activity research is limited by intention-behavior discordance and is beginning to recognize the importance of automatic processes in exercise. The purpose of the current study was to examine the role of multidimensional exercise self-efficacy (SE), explicit-implicit evaluative discrepancies (EIEDs) for health, and appearance on the intention-behavior gap in exercise. METHODS: A total of 141 middle-aged inactive participants (mean age = 46.12 [8.17] y) completed measures of intentions, SE, and explicit and implicit evaluations of exercise outcomes. The participants were classified as inclined actors (n = 107) if they successfully started the exercise program and inclined abstainers (n = 35) if they were not successful. RESULTS: The inclined actors and abstainers did not differ on intentions to exercise; however, the inclined actors had higher coping SE and lower EIEDs for health. In addition, the coping SE (Exp [ß] = 1.03) and EIEDs for health (Exp [ß] = -0.405) were significant predictors of being an inclined actor. CONCLUSIONS: The interaction between explicit and implicit processes in regard to health motives for exercise appears to influence the successful enactment of exercise from positive intentions. As most physical activity promotion strategies focus on health as a reason to be active, the role of implicit and explicit evaluations on behavioral decisions to exercise may inform future interventions.

A feasibility pragmatic clinical trial of a primary care network exercise and education program for people with COPD.

BACKGROUND: Pulmonary rehabilitation is an important component of chronic disease management in chronic obstructive pulmonary disease (COPD) and has been shown to improve shortness of breath, exercise capacity, quality of life, and decrease hospitalizations. However, pulmonary rehabilitation capacity is low. Primary care may be an effective method for delivering disease management services to this population. The objective of this feasibility pragmatic clinical trial was to evaluate enrollment and completion of a primary care network exercise and education program for people with COPD. METHODS: COPD patients (N = 23; mean age = 65 ± 9 years; FEV1 = 68 ± 20% predicted) were recruited after referral to a primary care network exercise program in Edmonton, Alberta. Participants self-selected either an 8-week 16-session supervised exercise program or an 8-week unsupervised exercise program where they received three visits with an exercise specialist. Both groups self-selected education sessions with clinicians for disease management support. Referrals, completion, and program outcomes (physical activity, exercise capacity and health status) were measured before (T1), immediately after (T2), and 8 weeks following the program (T3). RESULTS: Forty-three referrals were received in 10 months, where a minimum of 50 was required in order for the program to be considered feasible. Twenty-three participants provided baseline data, and twenty participants started the exercise program (10 in each exercise group), 16 of which completed the exercise program (80%). On average, 48% of the recommended education sessions were completed by participants. CONCLUSIONS: Enrollment into a COPD exercise and education program in a primary care network was low indicating the need for improved referral processes from physicians. Completion rates by participants were adequate for exercise but not education. The low referral rate and the lack of enrollment in COPD education by the patients indicate that a large-scale trial of the program as designed is not feasible.

Treating Systemic Lupus Erythematosus (SLE): The Impact of Historical Environmental Context on Healthcare Perceptions and Decision-Making in Charleston, South Carolina.

INTRODUCTION: Over 400,000 slaves were taken from Africa and brought to Charleston, South Carolina, as part of the transatlantic slave trade during the 18th and 19th centuries. Due to these negative historical events, the healthcare of African Americans in Charleston may be compromised in regard to chronic illnesses and other conditions affecting minorities, such as lupus. MATERIALS AND METHODS: The current study used an ethnographic approach to obtain the perspectives of lupus patients with the goal of identifying gaps within current research. In addition to patient perspectives, the geographical location of Charleston, South Carolina was considered through inquiries around culture, community, advocacy, and client/patient interaction to establish a narrative for the themes that emerged. RESULTS: The eleven major themes identified were connectedness, knowledge, experience with lupus, compliance, clinical trial participation, career and planning for the future, visits, access to resources, lifestyle, transition from child to adult care, and an overarching theme of self-management. CONCLUSION: Understanding healthcare perceptions and decision-making among culturally diverse populations, particularly those who have been defined by centuries of substandard care, marginalization, exploitation, and distrust, is critical to the development of culturally tailored interventions designed to improve patient outcomes and reduce health disparities.

Coping Versus Mastery Modeling Intervention to Enhance Self-efficacy for Exercise in Patients with COPD.

The literature suggests self-efficacy is a determinant of physical activity and management of Chronic Obstructive Pulmonary Disease (COPD). The purpose of this study was to (1) test the effects of two vicarious experience interventions, coping versus mastery modeling, on self-efficacy in COPD patients performing a cardiopulmonary exercise test (CPET), and (2) determine the type of self-efficacy most strongly related to physical activity in COPD patients. After a baseline assessment of self-efficacy (task, coping for exercise, coping for breathing, scheduling, and walking) and potential moderators, 120 COPD patients watched a mastery model or coping model CPET video, or received usual care verbal instructions. Then, self-efficacy was assessed, followed by a CPET, and another assessment of self-efficacy. Fitbits tracked participants' step count the week following contact. Repeated measures MANOVAs assessed the intervention effects and multiple regressions assessed the contribution of self-efficacy subtypes to step count. All self-efficacy subtypes improved in the mastery and coping conditions, although greater improvement of self-efficacy for coping with exercise barriers was observed in the coping condition. Self-efficacy did not improve in the control condition and no moderators were identified. Self-efficacy for coping with exercise barriers was the self-efficacy subtype most strongly related to step count. This research suggests modeling is a useful intervention technique to enhance self-efficacy in COPD patients, although coping models may be more beneficial than mastery models for enhancing capability beliefs during complex tasks. Future interventions in COPD patients should target self-efficacy for coping with exercise barriers.

Automatic associations of breast cancer and heart disease with fruit and vegetables and physical activity.

OBJECTIVES: This exploratory research examined if breast cancer or heart disease is automatically associated with physical activity compared to fruit and vegetable stimuli; if reading messages about reducing risk of breast cancer or heart disease through physical activity and fruit and vegetable consumption would affect automatic associations; and if automatic associations were related to intentions to be physically active or consume fruit and vegetables. METHODS: Participants were 80 women who completed pretest measures of automatic associations, then read a breast cancer, heart disease, or control message, followed by posttest measures. RESULTS: There was a significant association of breast cancer-related words with fruit and vegetables compared to physical activity. Heart disease was also more strongly associated with fruit and vegetables than physical activity at pretest but not at posttest. There were no other significant findings. CONCLUSION: This research highlights that fruit and vegetables rather than physical activity are more strongly associated with perceptions of breast cancer and heart disease. Automatic associations are an attitudinal construct, and the strength of association between fruit and vegetables, rather than physical activity, indicates how messages may be processed.

Objectively Measured Environmental Correlates of Toddlers' Physical Activity and Sedentary Behavior.

PURPOSE: Examine objectively measured environmental correlates of physical activity and sedentary behavior in toddlers (12-35 mo). METHODS: Participants were recruited at immunization appointments in Edmonton, Canada. Physical activity and sedentary time were objectively measured via accelerometers (n = 149). The parents reported screen time and demographic characteristics via a questionnaire (n = 249). Postal codes were used to link neighborhood data via geographic information systems. Neighborhood data included 4 environmental domains: functional (ie, walkability), safety (ie, crime), esthetic (ie, tree density), and destination (ie, cul-de-sac density, wooded area percentage, green space percentage, recreation density, park density). Weather data (temperature and precipitation) were obtained via historical weather records. Multilevel multiple linear regression models were used to account for clustering of participants within neighborhoods and adjustment of demographic variables. RESULTS: Each additional 10°C of mean temperature was significantly associated with 5.74 (95% confidence interval, 0.96-10.50) minutes per day of higher light-intensity physical activity, though the effect size was small (f2 = 0.08). No other significant associations were observed. CONCLUSIONS: The lack of significant findings for neighborhood environment factors suggests proximal factors (eg, features of the home environment) may be more important in predicting toddlers' physical activity and sedentary behavior. More indoor physical activity opportunities may be needed on colder days for toddlers.

Markers of Early Specialization and Their Relationships With Burnout and Dropout in Swimming.

Empirical evidence directly associating early sport specialization with burnout and dropout is lacking, although a relationship is theorized. Research in this area relies on time-intensive retrospective interviews or questionnaires that generate large amounts of data. The optimal use of these data for assessing early specialization (ES) and its relationship with key criterion variables is unclear. The purpose of this study was to add empirical evidence to the literature regarding ES, burnout, and dropout. This involved examining a large number of hypothesized markers of ES and reducing them to a smaller set useful for predicting burnout and dropout. Survey data were collected from 137 swimmers, age 12-13 years, and their parents, including descriptions of swimmers' sport backgrounds from age 6 until present. Contrary to what was expected, the ES items were not positively related to burnout and dropout. The authors present several possible explanations, including key motivational considerations.

Reciprocal relationships between self-efficacy, outcome satisfaction, and attendance at an exercise programme.

OBJECTIVES: The objectives of this study were to (i) investigate directional influences of self-efficacy, outcome satisfaction, and attendance during an exercise programme and (ii) examine the predictive capabilities of self-efficacy and outcome satisfaction on participant dropout. METHODS: Adults aged 35-65 years were recruited to a 12-month exercise programme. Self-efficacy was collected at baseline, three, six, nine, and 12 months, and outcome satisfaction at the same time-points except baseline. Cross-lagged panel analyses and logistic regression analyses were conducted to examine the primary and secondary objectives, respectively. RESULTS: Coping and scheduling self-efficacy had stronger reciprocal relationships with outcome satisfaction than task self-efficacy, although the strength of these relationships varied across time. Initially, task self-efficacy predicted programme attendance. Midway through the programme, outcome satisfaction predicted attendance, and by the end of the programme, coping self-efficacy was the strongest predictor of attendance. Self-efficacy and outcome satisfaction did not predict programme dropout. CONCLUSIONS: The results support the reciprocal relationship between outcome satisfaction and scheduling and coping self-efficacy and highlight the importance of sequentially targeting different beliefs and skills to facilitate successful initiation and maintenance of exercise behaviour. Statement of contribution What is already known on this subject? Self-efficacy and outcome satisfaction are related to exercise behaviour. The relationship between self-efficacy and outcome satisfaction are typically considered unidirectional. The longitudinal relationships among self-efficacy, outcome satisfaction, and physical activity participation are unclear. What does this study add? Outcome satisfaction had reciprocal relationships with both coping and scheduling self-efficacy for exercise. The importance of self-efficacy and outcome satisfaction to exercise attendance changes over time. Task self-efficacy was the strongest predictor of initial programme attendance. Midway through the programme, outcome satisfaction and task self-efficacy were the strongest predictors of attendance, and by the end of the programme, coping self-efficacy was the strongest predictor.

The Relationship of Explicit-Implicit Evaluative Discrepancy to Exercise Dropout in Middle-Aged Adults.

Discrepancies between automatically activated associations (i.e., implicit evaluations) and explicit evaluations of motives (measured with a questionnaire) could lead to greater information processing to resolve discrepancies or self-regulatory failures that may affect behavior. This research examined the relationship of health and appearance exercise-related explicit-implicit evaluative discrepancies, the interaction between implicit and explicit evaluations, and the combined value of explicit and implicit evaluations (i.e., the summed scores) to dropout from a yearlong exercise program. Participants (N = 253) completed implicit health and appearance measures and explicit health and appearance motives at baseline, prior to starting the exercise program. The sum of implicit and explicit appearance measures was positively related to weeks in the program, and discrepancy between the implicit and explicit health measures was negatively related to length of time in the program. Implicit exercise evaluations and their relationships to oft-cited motives such as appearance and health may inform exercise dropout.

Investigating relationships between ancestry, lifestyle behaviors and perceptions of heart disease and breast cancer among Canadian women with British and with South Asian ancestry.

BACKGROUND: Ethnic minority groups including Asians in Canada have different knowledge and perceptions of heart disease and breast cancer compared with the ethnic majority group. AIM: Examine relationships between perceptions of heart disease and breast cancer, and lifestyle behaviors for Canadian women with British and with South Asian ancestry. METHODS: Women with South Asian ( n = 170) and with British ( n = 373) ancestry ( Mage = 33.01, SD = 12.86) reported leisure time physical activity, intended fruit and vegetable consumption, disease perceptions (ability to reduce risk, control over getting the diseases, and influence of family history), and demographic information. Mann-Whitney tests and multiple hierarchical linear regressions were used to examine the relationships between lifestyle behaviors and disease perceptions, with ancestry explored as a possible moderator. RESULTS: Participants with South Asian ancestry believed they had greater ability to reduce their risk and have control over getting breast cancer than participants with British ancestry. Family history influences on getting either disease was perceived as higher for women with British ancestry. Age was positively related to all three perceptions in both diseases. Intended fruit and vegetable consumption was positively related to perceptions of ability to reduce risk and control of both diseases, but was stronger for women with South Asian ancestry regarding perceptions of breast cancer. Leisure time physical activity was positively related to perceptions of control over getting heart disease for women with British ancestry. CONCLUSIONS: Women's disease perceptions can vary by ancestry and lifestyle behaviors. Accurate representation of diseases is essential in promoting effective preventative behaviors.

Believability of messages about preventing breast cancer and heart disease through physical activity.

BACKGROUND: The purpose of this research was to examine the relationships of self-reported physical activity to involvement with messages that discuss the prevention of heart disease and breast cancer through physical activity, the explicit believability of the messages, and agreement (or disagreement) with specific statements about the messages or disease beliefs in general. METHODS: A within subjects' design was used. Participants (N = 96) read either a breast cancer or heart disease message first, then completed a corresponding task that measured agreement or disagreement and confidence in the agreement or disagreement that 1) physical activity 'reduces risk/does not reduce risk' of breast cancer or heart disease, 2) that breast cancer or heart disease is a 'real/not real risk for me', 3) that women who get breast cancer or heart disease are 'like/not like me', and 4) that women who get breast cancer or heart disease are 'to blame/not to blame'. This task was followed by a questionnaire measuring message involvement and explicit believability. They then read the other disease messages and completed the corresponding agreement and confidence task and questionnaire measures. Lastly, participants completed a questionnaire measuring physical activity related attitudes and intentions, and demographics. RESULTS: There was no difference in message involvement or explicit believability of breast cancer compared to heart disease messages. Active participants had a higher confidence in their agreement that physical activity is preventive of heart disease compared to breast cancer. Multinomial regression models showed that, in addition to physical activity related attitudes and intentions, agreement that physical activity was preventive of heart disease and that women with heart disease are 'like me' were predictors of being more active compared to inactive. In the breast cancer model only attitudes and intentions predicted physical activity group. CONCLUSIONS: Active women likely internalized messages about heart disease prevention through physical activity, making the prevention messages more readily available within memory, and active women may therefore process such information differently. The study of how health-related beliefs are created and are related to perceptions of prevention messages is a rich area of study that may contribute to more effective health promotion.

Taking a hard look at the Heart Truth campaign in Canada: A discourse analysis.

The Canadian Heart and Stroke Foundation launched the Heart Truth campaign to increase women's awareness of heart disease. However, little is known about how such campaigns intersect with broader understandings of gender and health. This discourse analysis examined the construction of gender, risk, and prevention within campaign material. Two primary discourses emerged: one of acceptable femininity, which outlines whose risk, survivorship, and prevention matters, and another of selfless prevention. Women of diverse ethnic, sexual, and socio-economic background were largely absent. Prevention was portrayed as a personal choice, eclipsing conversations about social determinants of health and the socio-political context of heart disease.

The importance of exercise self-efficacy for clinical outcomes in pulmonary rehabilitation.

OBJECTIVE: Pulmonary rehabilitation (PR) improves functional exercise capacity and health status in people with chronic obstructive pulmonary disease (COPD), although these outcomes are often not maintained following PR. Self-efficacy is a precursor to outcomes achievement, yet few studies have examined the importance of self-efficacy to outcome improvement during PR, or how it develops over time. Further, the contribution of exercise-specific self-efficacy to outcomes in PR is unknown. The aims of this study were to determine (a) whether baseline exercise self-efficacy predicts PR attendance and change in functional exercise capacity and health status over PR, and (b) if exercise self-efficacy changes with PR. METHOD: Fifty-eight out of 64 patients with COPD completed PR and assessments of exercise self-efficacy (task, coping, scheduling), the 6-minute walk test (6MWT), and St. George's Respiratory Questionnaire (SGRQ) at the beginning and end of PR. Analyses were conducted to predict attendance, and change in 6MWT and SGRQ, while controlling for baseline demographic and clinical indicators. Change in 6MWT, SGRQ, and self-efficacy with PR was also examined. RESULTS: Clinically significant increases in the 6MWT and SGRQ were achieved with PR. Stronger task self-efficacy predicted better attendance, while stronger coping self-efficacy predicted greater 6MWT improvement. No variables predicted SGRQ change. Scheduling self-efficacy significantly improved with PR, whereas task and coping self-efficacy did not. CONCLUSION: Baseline exercise self-efficacy appears to be a determinant of rehabilitation attendance and functional exercise improvement with PR. Clinicians should evaluate and target exercise self-efficacy to maximize adherence and health outcome improvement with PR. (PsycINFO Database Record

Moderators of Implicit-Explicit Exercise Cognition Concordance.

Investigating implicit-explicit concordance can aid in understanding underlying mechanisms and possible intervention effects. This research examined the concordance between implicit associations of exercise with health or appearance and related explicit motives. Variables considered as possible moderators were behavioral regulations, explicit attitudes, and social desirability. Participants (N = 454) completed measures of implicit associations of exercise with health and appearance and questionnaire measures of health and appearance motives, attitudes, social desirability, and behavioral regulations. Attitudes significantly moderated the relationship between implicit associations of exercise with health and health motives. Identified regulations significantly moderated implicit-explicit concordance with respect to associations with appearance. These results suggest that implicit and explicit exercise-related cognitions are not necessarily independent and their relationship to each other may be moderated by attitudes or some forms of behavioral regulation. Future research that takes a dual-processing approach to exercise behavior should consider potential theoretical moderators of concordance.

Biological Maturation and Physical Activity in South Korean Adolescent Girls.

INTRODUCTION/PURPOSE: To examine whether body fatness (i.e., body mass index and percent body fat) and psychosocial correlates of physical activity (PA) mediate the relationships between pubertal status and PA and sedentary behavior (SB) among South Korean adolescent girls. METHODS: Pubertal status, body fatness, sport competence, perceived barriers to PA, self-efficacy, parental support for PA, self-reported and step-determined PA, and self-reported SB were assessed among 236 South Korean adolescent girls (mean age = 13.56 ± 1.2 yr). RESULTS: A direct association was identified between pubertal status and PA in all models; more advanced pubertal status predicted lower PA among South Korean adolescents (b = -0.51 to -0.57; P < 0.001). Indirect effects on the pubertal status-PA relationship were also found: body fatness, perceived barriers to PA, and self-efficacy mediated the relationship between pubertal status and PA. Parental support for PA did not moderate the relationship between maturation and PA. SB was not associated with pubertal status. CONCLUSIONS: This study found mediated effects of body fatness, and psychosocial correlates (i.e., perceived barriers to PA, self-efficacy) on the relationship between maturity and PA among South Korean adolescent girls. Efforts to promote PA among South Korean adolescent girls should focus on reducing perceived barriers to PA, and increasing self-efficacy by providing more opportunities to have positive, and enjoyable experiences in PA among early-maturing girls.