Transition Readiness Assessment Questionnaire Spina Bifida (TRAQ-SB) specific module and its association with clinical outcomes among youth and young adults with spina bifida

1. Background

Health Care Transition (HCT), is defined as the process of the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems,” [1]. The transition and eventual transfer from pediatric to adult healthcare can be challenging for an adolescent with a chronic condition [2]. As adolescents approach adulthood and assume greater autonomy, they need to gain the skills required to manage their own health and health care independently, (e.g. taking their medications reliably; making and keeping appointments; and communicating effectively with healthcare providers). This set of self-management skills constitutes “Transition Readiness.” A growing body of literature suggests that many adolescents with chronic conditions do not acquire transition readiness skills and, as a result, experience a decline in their adherence to prescribed medical regimens (e.g. taking medications on time and in the correct amount, attending scheduled follow-up visits with doctors) and suffer poor outcomes such as increased preventable morbidity and even mortality [3, 4, 5, 6].

In addition to the above skills, youth with spina bifida have significant demands for self-management specific to their condition including monitoring for shunt malfunction, maintaining intact skin in areas that are insensate, and maintaining proper bowel and bladder function [7]. Spina bifida is a complex condition with a wide range of presentation depending upon the level of the spinal lesion and the degree of denervation of the bladder, bowel and skin. Patients with spina bifida are at particularly high risk for poor outcomes during transition. Youth and young adults with spina bifida with low self-management scores were more likely to have complications compared to those with higher self-management scores [8]. Moreover, when compared to children and adolescents with spina bifida, the young adults with spina bifida experience more frequent preventable hospitalizations and emergency room visits [9].

Previously we developed a disease independent measure of self-management skills entitled the Transition Readiness Assessment Questionnaire (TRAQ) that measures self-management skills including managing medications, making appointments, tracking health issues, and communicating with providers. Research demonstrates that TRAQ scores increase with age and are sensitive to interventions by providers designed to increase transition readiness and self-management skills, such as goal setting and texting reminder [10, 11, 12].

To complement the general health care transition skills assessed in the TRAQ, we developed an 11-item supplement to the TRAQ to assess self-management skills specific for spina bifida, including questions that assess the self-management of urine and stool continence management, and skin and shunt maintenance. In a companion article in this issue, we demonstrate that this 11-item scale has good internal reliability ( α = 0.91) and the good criterion validity when compared to the TRAQ and age [13]. The purpose of this study is to examine the predictive validity of TRAQ-Spina Bifida scale among youth and young adults with spina bifida. We hypothesize that higher scores on the TRAQ-SB indicate increased skill and consistency in managing bladder, stool and skin among youth and young adults with Spina Bifida and therefore will be associated lower rates of urinary and stool incontinence and lower rates of skin breakdown.

2. Methods

3. Variables and measures

4. Clinical outcomes

5. Discussion

We evaluated the relationship between self-reported self-management skills of adolescents and youngadults with spina bifida and critical clinical outcome such as stool and urine incontinence and skin breakdown to determine the predictive validity of the 11-item TRAQ-SB. In prior analyses, we demonstrated that the TRAQ-SB has very good psychometric properties, including excellent internal reliability (Cronbach α = 0.91) and good construct validity when compared to the TRAQ and respondent age [13]. We hypothesized that higher scores on the TRAQ-SB would indicate increased skill and consistency in managing bladder, stool and skin among youth and young adults with Spina Bifida and would therefore be associated lower rates of urinary and stool incontinence and lower rates of skin breakdown. We found that the TRAQ-SB score was a significant predictor of the frequency of urinary incontinence but only that Lesion Level was a significant predictor of stool incontinence and skin breakdown.

Importantly, few studies have demonstrated a relationship between transition readiness and outcomes during the transition age period of adolescence and young adulthood. This is due to the fact that self-management skills are difficult constructs to measure reliably as are patient outcomes. Because the TRAQ-SB has demonstrated good reliability, it can potentially be used to assess the complex relationship between youth self-management and disease specific outcomes. However, it also difficult to measure clinical outcomes because they are often not frequent and require both subjective measures, such as self-assessed outcomes, as well as objective measures, such as medical record documentation of skin breakdown or incontinence. To objectively document outcomes, the patient must present to the health care system and it must be recorded accurately. In patients with spina bifida, incontinence may occur commonly, but these episodes do not usually prompt the patient or family to seek clinical services, which prevents their objective documentation. Therefore, these outcomes are generally assessed using family or patient self-report. Patients and family caretakers are often reluctant to admit to their provider that they have had clinical “failures” such as stool or urine incontinence, especially when the patient’s lack of adherence contributes to the “failure.” Importantly, the patient’s response bias can also be due to their desire to please the provider, who has personally educated (or even operated on) the patient to prevent these events. Lastly, adolescents and even some young adults developmentally lack the self-reflection skills to accurately report these events. All of these factors contribute to the complexity of establishing the predictive validity of a self-management assessment questionnaire such as the TRAQ-SB and may explain the lack of relationship we found between TRAQ-SB scores and stool incontinence and skin breakdown.

More work needs to be done among youth with spina bifida to help them develop self-management skills, as is demonstrated by the few studies that demonstrate poor outcomes among young adults with spina bifida [9]. The network of 22 clinics that record data into the NSBPR is the ideal setting in which to develop new self-management measurement tools and test interventions to improve self-management. The NSBPR sites enter structured and standardized clinical, demographic and outcomes data by expert clinicians. The efforts to standardize data collection help reduce the signal-to-noise ratio so that the relationship between youth self-reported self-management skills and clinical outcomes has a better chance of emerging. We fielded the TRAQ-SB in one clinic that was participating in this network. To further refine measurement tools the effort should be expanded to multiple sites and a larger sample size. As we have documented in this study, with rigorous measurement of transition readiness and self-management and standardized measurement of outcomes, a relationship between these two constructs can be documented, however, not without limitations (e.g., we found a relationship for one outcome but not for two other outcomes).

Furthermore, the use of a brief, reliable and valid self-management tool has utility to monitor and promote the acquisition of self-management skills among youth with spina bifida. The old saw of, “What gets measured gets done,” has applicability to self-management skills. Measuring how well the youth is acquiring self-management skills should prompt discussions during clinic visits and not be lost in the many other issues that need to be discussed. We modeled the TRAQ-SB responses on the Stages of Change Model which has been used as a basis on which to assess and promote the adoption of healthy behaviors or the extinction of unhealthy behaviors and the improvement of outcomes relevant to those behaviors [15]. Using a Motivational Interviewing framework, providers can tailor their interventions to the particular stage of change of the individual youth, and work on collaboratively and set goals to incrementally adopt better skills of bowel, bladder or skin self-management. This can be done quite rapidly, even in a crowded visit for youth with complex disease. Over time the progress of the youth toward independence can be documented and new self-management behaviors can be introduced, reinforced and celebrated, creating a youth-focused and youth-friendly environment that is conducive to the adoption of increased internal motivation and self-competence, which are critical aspects of positive behavior change [16, 17].

Limitations. Our study has several limitations. The questions in the TRAQ-SB were necessarily general due to the heterogeneous nature of the self-management interventions required to maintain continence in the spina bifida population. Individuals may over or under report their self-management skills depending on how they understand the terms “necessary steps” or “recommended activities.” Research has demonstrated, however, that youth provide important and independent information on their health and health care compared to parental report [18]. Moreover, assessment of transition skills by adolescents are highly correlated with parental assessment of the same skills [19]. Secondly, as we discuss above, the measurement of the outcomes is also subject to response bias, confounding the relationship between self-management measures and outcomes. Outcomes such as urine and stool incontinence and skin breakdown may be particularly susceptible to response bias due to the stigma associated with these outcomes and because they do indicate a lack of adherence with the management plan prescribed by the treatment team, leading to under-reporting. Lastly, the time relationship between our predictor variable (self-management rating) and outcome (e.g., incontinence) is complex. We asked about self-management in the present and the outcomes were collected in the recent past (past 30 days and past year). Therefore, we are assuming current assessment of self-management skills reflects recent past self-management skills, which may not be accurate. However, our sample is primarily older adolescents and young adults, whose self-management skills are more likely to be stable.

6. Conclusion

Higher TRAQ-SB scores are negatively associated with bladder incontinence in youth with spina bifida. While stool continence and skin breakdown were not associated with TRAQ-SB scores, this relation is complex and may be obfuscated by either reporting bias or outcome measurement bias. To further refine the questionnaire and understand this relationship we need to field it prospectively in the SB network with larger samples. The TRAQ-SB questionnaire, however, does have value in the clinical setting to help promote the acquisition of specific self-management skills among youth with spina bifida.