Self-Management and Transition Readiness Assessment: Concurrent, Predictive and Discriminant Validation of the STARx Questionnaire

Cohen, Sarah; Hooper, Stephen R.; Javalkar, Karina; Haberman, Cara; Fenton, Nicole; Lai, Hsiao L.; Mahan, John D.; Massengill, Susan F.; Kelly, Maureen; Cantú, Guillermo; Medeiros, Mara; Phillips, Andrew T.; Sawicki, Gregory S.; Wood, David L.; Johnson, Meredith A.; Benton, Mary H.; Ferris, Maria

doi:10.1016/j.pedn.2015.05.006

Cited by 86 publications

(63 citation statements)

References 11 publications

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“…Questions were modified to be usable with a variety of chronic illnesses. We have used this adapted version of the scale in previous studies [23,24]. The possible range of scores was 5–45, with higher scores indicating greater self-efficacy.…”

Section: Methodsmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB)-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5), with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047), a diagnosis of attention-deficit/hyperactivity disorder (ADHD) in addition to the primary medical condition (β = 0.216, p = 0.008), frequent visits with a primary care provider (PCP) (β = 0.209, p = 0.026) and emergency room (ER) visits (β = 0.197, p = 0.038), and lower child self-efficacy (β = −0.241, p = 0.041) were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

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Section: Methodsmentioning

confidence: 99%

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

et al. 2017

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“…The STAR x Questionnaire measures self-reported HCT readiness and self-management for adolescents/young adults with chronic health conditions. The development, reliability, and validity of the tool have been described previously (13, 20). In brief, the STAR x Questionnaire comprises of 18 questions measured on a 5-point Likert scale and measures HCT readiness in six domains, including medication management, provider communication, engagement during appointments, disease knowledge, adult health responsibilities, and resource utilization.…”

Section: Methodsmentioning

confidence: 99%

“…The secondary aim was to measure HCT readiness in adolescents/young adults with EoE/EGE using the Self-Management and Transition to Adulthood with Rx (STAR x ) Questionnaire (13, 20) and to correlate it with factors impacting transition readiness.…”

Section: Introductionmentioning

confidence: 99%

Lack of Knowledge and Low Readiness for Health Care Transition in Eosinophilic Esophagitis and Eosinophilic Gastroenteritis

Eluri

Book

Kodroff³

et al. 2017

J. pediatr. gastroenterol. nutr.

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Objectives A growing population of adolescents/young adults with eosinophilic esophagitis (EoE) and eosinophilic gastroenteritis (EGE) will need to transition from pediatric to adult health providers. Measuring healthcare transition (HCT) readiness is critical, but no studies have evaluated this process in EoE/EGE. We determined the scope and predictors of HCT knowledge in patients and parents with EoE/EGE and measured HCT readiness in adolescents/young adults. Methods We conducted an online survey of patients ≥13 years and parents of patients with EoE/EGE who were diagnosed when ≤25 years of age. Parents answered questions regarding their children and their own knowledge of HCT. HCT readiness was assessed in adolescents/young adults aged 13-25 years with the Self-Management and Transition to Adulthood with Rx (STARx) Questionnaire (a six domain self-report tool) with a score range of 0-90. Results 450 participants completed the survey: 205 patients and 245 parents. Included in the analysis (those diagnosed with EoE/EGE at age ≤25 years) were 75 of 205 patients and children of 245 parent respondents. Overall, 78% (n=52) of the patients and 76% (n=187) of parents had no HCT knowledge. Mean HCT readiness score in adolescents/young adults (n=50) was 30.4±11.3 with higher scores in domains of provider communication and engagement during appointments. Mean parent-reported (n=123) score was 35.6±9.7 with higher scores in medication management and disease knowledge. Conclusions There was a significant deficit in HCT knowledge, and HCT readiness scores were lower than other chronic health conditions. HCT preparation and readiness assessments should become a priority for adolescents/young adults with EoE/EGE and their parents.

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“…There are a few published tools to measure transition readiness in patients with CKD/ESKD who speak English or Spanish [30][31][32][33] . Early data show that patients who are women, older in age, Caucasians, or who have greater literacy skills or private insurance appear to have greater transition readiness [31][32][33] , but further validation is underway.…”

Section: Healthcare Transition Self-management and Adherencementioning

confidence: 99%

“…Early data show that patients who are women, older in age, Caucasians, or who have greater literacy skills or private insurance appear to have greater transition readiness [31][32][33] , but further validation is underway.…”

Section: Healthcare Transition Self-management and Adherencementioning

confidence: 99%

Adolescents and Young Adults with Chronic or End-Stage Kidney Disease

Ferris¹,

Miles²,

Seamon³

2016

Blood Purif

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Self-Management and Transition Readiness Assessment: Concurrent, Predictive and Discriminant Validation of the STARx Questionnaire

Cited by 86 publications

References 11 publications

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

Lack of Knowledge and Low Readiness for Health Care Transition in Eosinophilic Esophagitis and Eosinophilic Gastroenteritis

Adolescents and Young Adults with Chronic or End-Stage Kidney Disease

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