Maria Ferris

Tweeting the Meeting: An In-Depth Analysis of Twitter Activity at Kidney Week 2011

In recent years, the American Society of Nephrology (ASN) has increased its efforts to use its annual conference to inform and educate the public about kidney disease. Social media, including Twitter, has been one method used by the Society to accomplish this goal. Twitter is a popular microblogging service that serves as a potent tool for disseminating information. It allows for short messages (140 characters) to be composed by any author and distributes those messages globally and quickly. The dissemination of information is necessary if Twitter is to be considered a tool that can increase public awareness of kidney disease. We hypothesized that content, citation, and sentiment analyses of tweets generated from Kidney Week 2011 would reveal a large number of educational tweets that were disseminated to the public. An ideal tweet for accomplishing this goal would include three key features: 1) informative content, 2) internal citations, and 3) positive sentiment score. Informative content was found in 29% of messages, greater than that found in a similarly sized medical conference (2011 ADA Conference, 16%). Informative tweets were more likely to be internally, rather than externally, cited (38% versus 22%, p<0.0001), thereby amplifying the original information to an even larger audience. Informative tweets had more negative sentiment scores than uninformative tweets (means −0.162 versus 0.199 respectively, p<0.0001), therefore amplifying a tweet whose content had a negative tone. Our investigation highlights significant areas of promise and improvement in using Twitter to disseminate medical information in nephrology from a scientific conference. This goal is pertinent to many nephrology-focused conferences that wish to increase public awareness of kidney disease.

A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TR(x)ANSITION scale.

Objective: To describe the development of the University of North Carolina (UNC) TRxANSITION Scale that measures the health-care transition and self-management skills by youth with chronic health conditions. Methods: Item and scale development of the UNC TRxANSITION Scale was informed by two theoretical models, available literature, and expert opinion interviews and feedback from youth with chronic conditions, their parents, and interdisciplinary collaboration. Through an iterative process, three versions of the scale were piloted on a total of 185 adolescents and emerging adults with different chronic illnesses. This clinically administered scale relies on a semi-structured interview format of the patient and does not rely solely on patient report, but is verified with information from the medical record to validate responses. Results: Following the item development and the three iterations of the scale, version 3 was examined in a more intensive fashion. The current version of the UNC TRxANSITION Scale comprises 33 items scattered across the following 10 domains: Type of illness, Rx=medications, Adherence, Nutrition, Self-management, Informed-reproduction, Trade/school, Insurance, Ongoing support, and New health providers. It requires approximately 7–8 min to administer. With a sample of 128 adolescents and young adults, ranging in age from 12 to 20, inter-rater reliability was strong (r = 0.71) and item-total correlation scores were moderate to high. Content and construct validity were satisfactory, and the overall score was sensitive to advancing age. The univariate linear regression yielded a beta coefficient of 1.08 (p < 0.0001), indicating that the total score increased with advancing age. Specifically, there was about a one point increase in the total score for each year of age. Conclusion: The UNC TRxANSITION Scale is a disease-neutral tool that can be used in the clinical setting. Initial findings suggest that it is a reliable and valid tool that has the potential to measure health-care transition skill mastery and knowledge in a multidimensional fashion.

The Transition Readiness Assessment Questionnaire (TRAQ): Its Factor Structure, Reliability, and Validity

OBJECTIVE National consensus statements recommend that providers regularly assess the transition readiness skills of adolescent and young adults (AYA). In 2010 we developed a 29-item version of Transition Readiness Assessment Questionnaire (TRAQ). We reevaluated item performance and factor structure, and reassessed the TRAQs reliability and validity. METHODS We surveyed youth from 3 academic clinics in Jacksonville, Florida; Chapel Hill, North Carolina; and Boston, Massachusetts. Participants were AYA with special health care needs aged 14 to 21 years. From a convenience sample of 306 patients, we conducted item reduction strategies and exploratory factor analysis (EFA). On a second convenience sample of 221 patients, we conducted confirmatory factor analysis (CFA). Internal reliability was assessed by Cronbachs alpha and criterion validity. Analyses were conducted by the Wilcoxon rank sum test and mixed linear models. RESULTS The item reduction and EFA resulted in a 20-item scale with 5 identified subscales. The CFA conducted on a second sample provided a good fit to the data. The overall scale has high reliability overall (Cronbachs alpha = .94) and good reliability for 4 of the 5 subscales (Cronbachs alpha ranging from .90 to .77 in the pooled sample). Each of the 5 subscale scores were significantly higher for adolescents aged 18 years and older versus those younger than 18 (P < .0001) in both univariate and multivariate analyses. CONCLUSIONS The 20-item, 5-factor structure for the TRAQ is supported by EFA and CFA on independent samples and has good internal reliability and criterion validity. Additional work is needed to expand or revise the TRAQ subscales and test their predictive validity.

Memory and Executive Functions in Pediatric Chronic Kidney Disease

This study examined the memory and executive functioning of children and adolescents with chronic kidney disease (CKD). The sample included 20 children and adolescents with CKD ranging in age from 7.50 to 19.04 years (M = 13.41, SD = 3.20). Intellectual function for the group was within the low average to average range (M = 89.32, SD = 14.80). Of the participants with CKD, 12 were receiving maintenance dialysis therapy at the time of testing and 8 were managed with conservative therapy. Healthy controls were used as a comparison group (n = 18). This group ranged in age from 7.47 to 18.37 years (M = 12.93, SD = 2.90). Intellectual function was within the average range (M = 112.18, SD = 13.14). All subjects received a comprehensive battery of memory and executive function tasks as part of a larger neuropsychological evaluation. Preliminary examinations of the data revealed a significant difference between the groups in IQ, with the typical group being significantly higher than the CKD group. A multivariate analysis controlling for chronological age revealed significant group differences, with specific differences being noted in all of the memory functions, and the Initiation and Sustaining executive function domains. In all instances the CKD group performed lower than the typical group. The CKD group was particularly deficient in their initiation behaviors within the executive function domain. The groups did not differ on Set-Shifting or Inhibition. These findings remained present even when IQ and chronological age were controlled in the analyses, suggesting the possibility of specific encroachment of renal disease on memory and executive functions beyond the generalized effects of lower IQ. This study represents one of the most extensive examinations of memory and executive functions that has been conducted to date on children and adolescents with CKD. While pervasive dysfunction was not apparent in the children with CKD, they clearly appeared to be at risk for lower IQ as well as inefficiencies in key neurocognitive domains.

Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA)

The transfer of young patients from pediatric to adult renal care takes place after a transition process which involves both sides. It is important that it is individualized for each young person, focusing on self-management skills as well as assessing support structures. The consensus statement has been developed by the panel of adult and pediatric nephrologists and endorsed by the councils of both ISN and IPNA. It is hoped that the statement will provide a basis for the development of locally appropriate recommendations for clinical practice.

Why Not Nephrology? A Survey of US Internal Medicine Subspecialty Fellows

BACKGROUND There is a decreased interest in nephrology such that the number of trainees likely will not meet the upcoming workforce demands posed by the projected number of patients with kidney disease. We conducted a survey of US internal medicine subspecialty fellows in fields other than nephrology to determine why they did not choose nephrology. METHODS A web-based survey with multiple choice, yes/no, and open-ended questions was sent in summer 2011 to trainees reached through internal medicine subspecialty program directors. RESULTS 714 fellows responded to the survey (11% response rate). All non-nephrology internal medicine subspecialties were represented, and 90% of respondents were from university-based programs. Of the respondents, 31% indicated that nephrology was the most difficult physiology course taught in medical school, and 26% had considered nephrology as a career choice. Nearly one-fourth of the respondents said they would have considered nephrology if the field had higher income or the subject were taught well during medical school and residency training. The top reasons for not choosing nephrology were the belief that patients with end-stage renal disease were too complicated, the lack of a mentor, and that there were insufficient procedures in nephrology. CONCLUSIONS Most non-nephrology internal medicine subspecialty fellows never considered nephrology as a career choice. A significant proportion were dissuaded by factors such as the challenges of the patient population, lack of role models, lack of procedures, and perceived difficulty of the subject matter. Addressing these factors will require the concerted effort of nephrologists throughout the training community.

Obesity, Albuminuria, and Urinalysis Findings in US Young Adults from the Add Health Wave III Study

BACKGROUND AND OBJECTIVES Obesity has been associated with kidney disease in adults. This study was designed to evaluate the association of obesity with an early marker of kidney disease, albuminuria, among young adults. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Urinalysis (n = 9371), albumin-to-creatinine ratio (n = 4463), and body mass index (kg/m2) were measured in the Add Health Wave III cohort (2001 to 2002), a multiethnic sample of young adults followed for approximately 6 yr. Multivariate logistic regression modeled the association of sex-specific albuminuria with body mass index, adjusted for sample weights, sex, race, ethnicity, and glycosuria. RESULTS Urinalysis revealed that 0.8% had proteinuria, 4.6% had hematuria, 0.2% had combined hematuria and proteinuria, and 1.5% had glycosuria. Albuminuria prevalence was 4.4%. Mean body mass index was higher among those with albuminuria compared with those without. There were no associations between body mass index categories of 25 to < 30 or 30 to < 35 kg/m2 with albuminuria compared with the lowest body mass index (< 25 kg/m2); however, the highest category (> or = 35 kg/m2) was associated with albuminuria, compared with the lowest category (OR = 1.76, 95% CI: 1.02 to 3.04). Glycosuria (OR = 4.0; 95% CI: 1.5 to 11.1, p < 0.01) as well as increasing body mass index during the 6-yr follow-up (OR: 1.07 per unit change in kg/m2; 95% CI: 1.00 to 1.13, p = 0.04) were also associated with albuminuria. CONCLUSIONS Given the increasing prevalence of obesity, the association of albuminuria associated with obesity in young adults is particularly concerning. Obesity may be a target for primary prevention of kidney and cardiovascular disease.

International and Interdisciplinary Identification of Health Care Transition Outcomes

IMPORTANCE There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs. OBJECTIVE To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants. DESIGN, SETTING, AND PARTICIPANTS A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014. EXPOSURES Health care transition outcomes of adolescents and young adults with special health care needs. MAIN OUTCOMES AND MEASURES Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important). RESULTS The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities. CONCLUSIONS AND RELEVANCE Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.

The health care transition research consortium health care transition model: A framework for research and practice

The body of health care transition (HCT) research is in the early stages of development. One of the major limitations of this developing field of research is the lack of theoretically-directed studies. This research limitation has hindered understanding of the variables contributing to successful HCT. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity and the relationships amongst variables that influence HCT outcomes among adolescents and emerging adults with special health care needs (AEA-SHCN). Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCNs biopsychosocial HCT outcomes. This article provides a description of a health care transition theoretical model developed by the international and interdisciplinary Health Care Transition Research Consortium (HCTRC) that can be applied for testing in research and serve as a framework for clinical practice and policymaking. The HCTRC model is composed of four domains that are considered integral to the HCT phenomenon: Individual, Family/Social Support, Environment, and the Health Care System. The HCTRC model specifies the variables, processes, and potential mediators and moderators that affect the HCT outcomes.

Pediatric Chronic Kidney Disease and the Process of Health Care Transition

Health care transition is a process that involves purposeful, planned efforts to prepare the pediatric patient to move from caregiver-directed care to disease self-management. Acquisition of sufficient disease self-management skills for a complex regimen requires cognitive ability consideration for each patient. Transition programs that involve patients, families, pediatric and adult health care providers, and interdisciplinary collaboration are key to ensuring a successful transfer to adult-focused health services. Tools to measure and diagnose the process of transition and acquisition of disease self-management skills are introduced. An evidence-based transition process requires planning and education, in addition to effective coordination.