A scoping Review of tools used to assess patient Complexity in rheumatic disease

ObjectivePatients with rheumatic diseases often have multiple comorbidities which may impact well‐being leading to high psychosocial complexity. This scoping review was undertaken to identify complexity measures/tools used in rheumatology that could help in planning and coordinating care.MethodsMEDLINE, EMBASE and CINAHL were searched from database inception to 14 December 2019 using keywords and Medical Subject Headings for “care coordination”, “complexity” and selected rheumatic diseases and known complexity measures/tools. Articles describing the development or use of complexity measures/tools in patients with adult rheumatologic diagnoses were included regardless of study design. Included articles were evaluated for risk of bias where applicable.ResultsThe search yielded 407 articles, 37 underwent full‐text review and 2 were identified during a hand search with 9 included articles. Only 2 complexity tools used in populations of adult patients with rheumatic disease were identified: the SLENQ and the INTERMED. The SLENQ is a 97‐item patient needs questionnaire developed for patients with systemic lupus (n = 1 study describing tool development) and applied in 5 cross‐sectional studies. Three studies (a practice article, trial and a cross‐sectional study) applied the INTERMED, a clinical interview to ascertain complexity and support coordinated care, in patients with rheumatologic diagnoses.ConclusionsThere is limited information on the use of patient complexity measures/tools in rheumatology. Such tools could be applied to coordinate multidisciplinary care and improve patient experience and outcomes.Patient contributionThis scoping review will be presented to patient research partners involved in co‐designing a future study on patient complexity in rheumatic disease.     

An Exploration of Dyadic Relationship Approach-Avoidance Goals and Relationship and Sexual Satisfaction in Couples Coping with Endometriosis

Endometriosis affects women of reproductive age and is associated with higher levels of sexual and relational distress. Despite the relational context of endometriosis, the research pertaining to dyadic relationship goals is lacking. An exploration of the relationship goals of couples coping with endometriosis can facilitate the understanding of potential protective mechanisms that mitigate the relational components of the condition. Guided by the approach-avoidance theoretical framework, the current cross-sectional study aimed to examine the role relationship goals play in sexual and relationship satisfaction in couples coping with endometriosis. Approach goals relate to the pursuit of a positive outcomes, whereas avoidance goals relate to the avoidance of negative outcomes. Women with endometriosis and their partners (N?=?61) completed an online survey measuring relationship goals and relationship and sexual satisfaction. The study results indicated that, for women, their own and their partner’s higher relationship approach goals were linked to higher sexual satisfaction. For partners of women with endometriosis, their own higher relationship approach goals were associated with their own higher relationship satisfaction. Higher relationship avoidance goals in both women with endometriosis and partners were associated with higher relationship satisfaction. The study’s findings highlight relationship goals as relevant to the relational and sexual experience of couples coping with endometriosis. When treating women with endometriosis, the inclusion of partners and consideration of factors beyond the physical illness are important for a holistic management approach.

     

Arrangements versus Agreements: Evaluating Two Approaches to Measuring Male Couples’ Rules and Understandings Around Sex with Outside Sex Partners

Archives of Sexual Behavior - One- to two-thirds of new HIV infections among sexual minority men occur within the context of main partnerships. This has led to increasing attention to the rules and...     

Newborn minor physical anomalies and prediction of infant behavior

The relationship between a newborn score of minor physical anomalies (MPAs) and behavior at ages 1 and 2 was examined. From an initial screening population of 933, 63 high anomaly and 78 low anomaly infants were followed until age 2 by examiners blind for the newborn anomaly score. High anomaly infants were more likely to be temperamentally difficult as rated by parent interview and direct observation. A subgroup of six infants who were considered irritable at both ages 1 and 2 were all from the high anomaly group. However, there was little agreement between behavioral ratings across situations and over time, and there were no significant predictors of behavior problems at age 2 based on any newborn or 1-year measure. These results indicate that the newborn anomaly score by itself is unlikely to prove clinically useful in predicting preschool behavior problems for an unselected population. The usefulness of this measure for other, high-risk, populations remains to be explored.Work done at Georgetown University School of Medicine was supported by a grant from the Easter Seal Research Foundation of the National Easter Seal Society for Crippled Children and Adults. The authors would like to thank John Bartko, Biometry Branch, NIMH, for advice on statistical analysis, and Frank Pederson, Social and Behavioral Sciences Branch, NICHD, Bethesda, Maryland, and Richard Q. Bell, Department of Psychology, University of Virginia, for helpful discussion of this work.     

Factors associated with breast cancer clinical trials participation and enrollment at a large academic medical center.

PURPOSE: The practice patterns of medical oncologists at a large National Cancer Institute Comprehensive Cancer Center in Detroit, MI were evaluated to better understand factors associated with accrual to breast cancer clinical trials. PATIENTS AND METHODS: From 1996 to 1997, physicians completed surveys on 319 of 344 newly evaluated female breast cancer patients. The 19-item survey included clinical data, whether patients were offered clinical trial (CT) participation and enrollment, and when applicable, reasons why they were not. Multivariate analyses using logistic regression were performed to evaluate predictors of an offer and enrollment. RESULTS: The patients were 57% white, 32% black, and 11% other/unknown race. One hundred six (33%) were offered participation and 36 (34%) were enrolled. In multivariate analysis, CTs were less likely offered to older women (mean age, 52 years for those offered v 57 years for those not offered; P =.0005) and black women (21% of blacks offered v 42% of whites; P =.0009). Women with stage 1 disease, poor performance status, and those who were previously diagnosed were also less likely to be offered trials. None of these factors were significant predictors of enrollment. Women were not offered trials because of ineligibility (57%), lack of available trials (41%), and noncompliance (2%). Reasons for failed enrollment included patient refusal (88%) and failed eligibility (12%). CONCLUSION: It is important for cooperative groups to design studies that will accommodate a broader spectrum of patients. Further work is needed to assess ways to improve communication about breast cancer CT participation to all eligible women.