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Abstract

PURPOSE:

The purpose of this study is to report preliminary evidence to support a new condition-specific measure of transition readiness that is theoretically grounded in the Stages of Changes framework. The Transition Readiness Assessment Questionnaire-Spina Bifida (TRAQ-SB) supplement is a newly developed tool used to measure independence and skill acquisition related to spina bifida. Similar to the Transition Readiness Assessment Questionnaire (TRAQ), the TRAQ-SB uses a 5-point Likert response set.

METHODS:

Working with a multi-disciplinary team with expertise in the care of children with spina bifida, the authors developed twelve items pertaining to main aspects of SB self-management. The items were reviewed and revised through several iterations by the team and patients. The items were then fielded at a spina bifida Specialty Clinic, where 93 consecutive patients 12–25 years of age were approached to participate and 90 were administered the 20-item TRAQ and a 12-item TRAQ-SB questionnaire. A principal component analysis (PCA) was conducted on the twelve items with oblique rotation (promax). Criterion validity was also assessed by examining the correlation of the TRAQ-SB supplement with the TRAQ and with age.

RESULTS:

Results of the factor analysis revealed that eleven of the twelve items loaded onto one factor with factor loadings ranging from 0.46 to 0.84. The scale yielded excellent internal reliability with a Cronbach alpha of 0.90. Correlations of the TRAQ-SB supplement scale score with the TRAQ overall scale score demonstrated good criterion validity ( $r=$ 0.74, $p<$ 0.01). In addition, it was highly correlated with the TRAQ subscales, varying from 0.68 to 0.74 (all $p<$ 0.01). Lastly, the TRAQ-SB was significantly correlated with age ( $r=$ 0.25, $p<$ 0.01).

CONCLUSIONS:

Results of our analyses indicated that the TRAQ-SB demonstrated good internal reliability and criterion validity as evidenced by strong correlation with age and the validated TRAQ measure. The TRAQ-SB tool can be useful to incorporate transition readiness assessment and self-management training into routine care for adolescents with spina bifida.

Keywords

Health care transition transition readiness spina bifida self-management urinary incontinence

1. Background

Transition is a multi-stage process that includes assessment of transition readiness, development of a transition care plan by the providers in collaboration with the parent and youth, connection to and communication with the adult provider and assurance that the transfer to adult care is completed [1]. The challenges of the transition process for youth and young adults with spina bifida, as for all pediatric populations, are multifaceted and multi-systemic, given the complex nature of the interaction between health care systems, the disease process and demand for self-management and adolescent development. Additional factors that are important to a successful health care transition (HCT) are key demographic characteristics such as socio-economic status, health insurance status, family functioning, specifically teen-parent communication [2, 3].

Measuring the acquisition of self-management skills is a key component of the transition process and essential to evidence-based health care transition practice so that health care providers can understand their patients’ self-management skills and determine when they are ready to transfer them to adult care. It is still undecided what is the “best” way, and when is the “best” time, to transition youth into adult-focused services. Creating measures that assess health care transition and self-management skills will guide interventions designed to improve HCT that are fundamental to success in navigating adult healthcare. Despite calls for evidenced-based assessment of youth and young adults’ transition readiness and national initiatives for improving transition from child-centered to adult-centered health care (e.g., the American Academy of Pediatrics transition algorithm and The Maternal and Child Health Bureau), few validated measures exist that assess and track transition readiness for youth and young adult patients with chronic health conditions [4, 5, 6, 7, 8].

Transition Readiness, as a construct, includes a variety of related activities, skills, and tasks, such as managing medications, making and keeping appointments, tracking health issues and communicating with providers. Thus, Transition Readiness is measurable, and as a set of skills, is potentially modifiable before transfer [9, 10, 11, 12]. A recent systematic review identified disease specific and disease independent transition readiness tools and concluded that further testing and development of new and existing measures are needed [13, 14]. Of the tools available that use a non-categorical approach [15], the Transition Readiness Assessment Questionnaire (TRAQ) was identified [14].

The Transition Readiness Assessment Questionnaire (TRAQ) represents an evidence-based transition readiness measure and was designed to measure core self-management skills such as medication management, tracking health issues, making and keeping appointments and talking with providers and be agnostic with respect to disease process [16, 17]. The TRAQ focuses on broad disease management skills, which have relevance to youth and young adults with spina bifida, but do not capture all the complex self-management skills needed to promote healthy outcomes in youth and young adults with spina bifida. Youth with spina bifida, who have a wide range of impairments in specific organ systems, must monitor themselves for ventriculo-peritoneal shunt malfunction, protect their insensate skin and monitor for skin breakdown, and manage their bowel and bladder function to maintain continence.

Therefore, in this study, we describe the development and validation of the Transition Readiness Assessment Questionnaire: Spina Bifida Supplement (TRAQ-SB) for youth and young adults with spina bifida. The TRAQ-SB fills a need for more specific transition readiness measures for youth and young adults with spina bifida, while also serving as a model for the rigorous development of a disease-specific survey in a burgeoning and complex area of research. Similar to the Transition Readiness Assessment Questionnaire (TRAQ), the TRAQ-SB scale consists of a 5-point Likert response set using a Stages of Change Framework, (from pre-contemplation $=$ 1 to mastery $=$ 5) to assess their self-management skills and their readiness to advance their skills.

The objectives of our study were to assess the psychometric properties, the internal reliability and the criterion validity of the new TRAQ-SB. We did this by conducting a factor analysis and internal reliability analyses and comparing the scores of the TRAQ-SB to those of the general TRAQ scores and demographic characteristics. We hypothesized that the newly developed TRAQ-SB scale would be correlated with the general TRAQ scale and with participant age.

2. Methods

2.1 Questionnaire development

We developed the TRAQ-SB to measure adolescent-reported self-management skills essential to successful transition for youth and young adults with spina bifida. Possible survey items were created following a thorough review of existing measures examining spina bifida-specific self-management. Working with a multidisciplinary team of experts in the care of children and youth with spina bifida, we developed an initial list of key knowledge and actions pertinent to being healthy with spina bifida. Priority items pertained to main aspects of SB self-care and self-management including urine and stool continence, prevention of skin breakdown and awareness of signs of shunt malfunction. A fifteen-item questionnaire was developed to supplement the TRAQ and assess the above aspects of SB self-care and self-management. The items were reviewed and revised through several iterations by healthcare providers and by patients 12–25 enrolled in the SB Clinic. We then conducted 10 cognitive interviews over three rounds to assess whether the intended respondents understood each of the survey items being asked. The cognitive interview protocol contained pre-specified cognitive probes to evaluate the understandability of specific words and phrases, and to clarify participant thought processes in answering the questions and selecting response options. Participants were also given the opportunity to suggest alternative language for specific items. This process resulted in a 12-item scale, with three items being removed due to redundancy, irrelevance, or being poorly worded.

2.2 Sample

The study was conducted at a multi-disciplinary clinic participating in the National Spina Bifida Patient Registry (NSBPR). Ninety-three consecutive youth ages 12–25 were approached to participate in the study. Three declined to participate and ninety youth and young adults with spina bifida completed the 20-item TRAQ and the newly developed 12-item TRAQ-SB. The questionnaire was administered by paper and pencil, and the responses to the questionnaires were matched to their health data within the NSBPR.

2.3 Measures demographic variables

Demographic and clinical information was provided from the NSBPR. Specifically, we obtained race, ethnicity, sex, age, insurance status, functional lesion level, and ambulatory status. Race included the following categories: Black, White and other. Ethnicity included whether the participant identified as Hispanic or not Hispanic. Functional lesion level, which in its original form indicated either right or left lesion level (ten categories), was recoded into five categories from most severe to most mild lesion level: thoracic, high-lumbar, mid-lumbar, low-lumbar and sacral. Lastly, data received included whether or not the participant had an individualized education program (IEP).

We modeled the TRAQ responses on the Stages of Change Model [18], which has been used to promote the adoption of healthy behaviors or the extinction of unhealthy behaviors and the improvement of outcomes relevant to those behaviors. Our responses are designed to measure youth’s 5 stages of change from Pre-contemplation, stage 1 (e.g., “ No, I do not know how”), Contemplation, Stage 2 (No, but I want to learn), Initiation, stage 3 (e.g., “No, but I am learning to do this”), Action, Stage 4 (Yes, I have started doing this), Mastery, stage 5 (e.g., “ Yes, I always do this when I need to”) of independent self-management behaviors and interaction with the health care system [19, 20]. We used this same framework for the self-management questions specific to youth with spina bifida, namely do they understand and act to competently manage their shunt, bowel, bladder and skin?

2.4 Statistical analysis

All statistical analyses were conducted in IBM SPSS Statistics 24. Descriptive statistics (frequencies and percentages) for categorical variables (age, sex, race/ethnicity, level of education, insurance status, and ambulatory status) were conducted. For individual TRAQ-SB scale items, item response, means, standard deviations, and distributions were assessed. A Principal Component Factor Analysis (PCA) was conducted with oblique rotation (promax) to examine factor structure. The relationship of each variable to the underlying factor is expressed by the factor loading. Items with a rotated factor loading of at least (meaning $\geqslant+0.4$ or $\leqslant-0.4$ ) onto the factor were retained. Any item less than $|0.4|$ was dropped from the scale. We also assessed criterion validity by examining the correlation of the TRAQ-SB scale score with the overall TRAQ score and the TRAQ subscale scores. We conducted bivariate analyses using the t-test to evaluate the relationship between TRAQ-SB scores and categorical clinical and demographic variables, including age, sex, race, insurance payer (any commercial vs non-private), SB type (myelomeningocele vs non-myelomeningocele), functional level of lesion (thoracic, low-, mid-, or high-lumbar or sacral), and categories of patient ambulatory status.

Table 1
Demographic, clinical and bivariate statistics for the TRAQ-SB scores

Demographic characteristics	$n$ (%)	Mean (sd)	$p$ -value
Sex
Male	45 (50)	3.77 (1.20)	0.82
Female	45 (50)	3.83 (0.98)
Race
Black	14 (15.6)	3.28 (1.04)	0.06
White	73 (81.1)	3.89 (1.26)
Missing	4 (3.3)
Age
$\leqslant$ 17	49 (54.4)	3.55 (1.12)	0.016
18–25	41 (45.6)	4.11 (0.99)
Have IEP
Yes	31 (34.4)	3.55 (1.26)	0.55
No	57 (63.3)	3.99 (0.95)
Missing	2 (2.2)
Insurance category
Commercial insurance (HMO/PPO)	44 (48.9)	3.88 (0.89)	0.63
Medicaid	44 (48.9)	3.77 (1.26)
Missing	2 (2.2)
Clinical characteristics
Lesion level
Sacral	31 (34.4)	3.95 (0.89)	0.18
Low-lumbar	11 (12.2)	3.56 (0.98)
Mid-lumbar	18 (20.0)	4.15 (1.05)
High-lumbar	8 (8.9)	3.94 (1.12)
Thoracic	22 (24.4)	3.38 (1.34)
Type of spina bifida
Myelomeningocele	71 (79)	3.87 (1.12)	0.26
Non-myelomeningocele	19 (21.1)	3.55 (0.97)
Ambulation status
Community/household ambulator	44 (49)	3.88 (1.03)	0.52
Non-ambulator	46 (51)	3.73 (1.16)
Ambulation status
Community/household ambulator	44 (49)	3.88 (1.03)	0.52
Non-ambulator	46 (51)	3.73 (1.16)

Table 2

Items descriptive statistics for TRAQ-SB 12 items

		$N$	Range	Mean (sd)
1	Do you know how to tell if something is wrong with your shunt (e.g., headache, vomiting, seizures, etc.)?	88	1–5	3.86 (1.47)
2	Do you tell someone (nurse, doctor or support person) else if you think you have signs that something is wrong with your shunt?	89	1–5	4.04 (1.38)
3	Do you practice bowel management as recommended (e.g., use of suppositories, enemas, stool softeners, or laxatives as needed)?	89	1–5	3.69 (1.63)
4	Do you know how to tell warning signs of GI problems (e.g., diarrhea, constipation)?	89	1–5	3.54 (1.56)
5	Do you take the necessary steps to address GI problems (e.g., tell a nurse, doctor or support person or follow a treatment plan)?	90	1–5	3.78 (1.51)
6	Do you practice bladder management as recommended (e.g., self-catheterizes on agreed upon schedule)?	89	1–5	3.99 (1.55)
7	Do you know how to tell if you have a urinary tract infection (e.g., fever, stomach ache, smelly urine, cloudy urine, or blood in urine)?	90	1–5	3.87 (1.44)
8	Do you take the necessary steps to address bladder problems (e.g., tell a nurse, doctor or support person or follow a treatment plan)?	89	1–5	4.18 (1.28)
9	Do you take steps to protect your skin from potential damage, pressure sores or infection?	89	1–5	3.82 (1.37)
10	Do you know how to tell if something is wrong with your skin (e.g., redness, swelling, fever, blister and sores)?	89	1–5	3.97 (1.41)
11	Do you take the necessary steps to address skin problems (e.g., tell a nurse, doctor or support person or follow a treatment plan)?	89	1–5	3.87 (1.41)
12	Do you order new equipment when you need it or get your equipment fixed if it needs repairing? (Leave blank if you do not use equipment)*	58	1–5	3.07 (1.38)
	* Denotes item not included in final 11-item scale

3. Results

Sample demographics and scale properties are presented in Tables 1 and 2, respectively. There were equal numbers of female and male patients with spina bifida. A little over 80% of youth with spina bifida in our sample were White (82%), 16% were Black, and in 3% race was unknown. Our sample included almost equal number of youth and young adults with 54% being 17 years and under and 46% being between 18 and 25 years of age. Functional lesion level varied, with 34% having sacral lesion level, 12% low lumbar, 20% mid-lumbar, 9% high lumbar, and 25% thoracic. Seventy-nine percent of our sample had myelomeningocele, while the remainder had other types of spina bifida. The majority of youth in the sample were non-ambulators. Community ambulators represented 42% of our sample, household ambulators, 7%, and 1% therapeutic ambulators. There were approximately equal numbers of youth and young adults with spina bifida in our sample (49%) who had commercial insurance. Other types of insurance include Medicaid (39%), Medicare (5%), Tri-Care/Military (4%), State High Risk Plan (1%). One person in our sample was uninsured. For the youth and young adults in our sample, and 35% had an Individual Education Plan (IEP). Our sample demographics are similar to national demographics reported by National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention.

Table 1 demonstrates the bivariate analyses of the TRAQ-SB scores by the demographic and clinical characteristics of our sample. The only characteristic that was significantly associated with the SB TRAQ was age, with older participants having higher scores on the TRAQ-SB.

Table 2 shows the mean, standard deviations and ranges of each of the 12 items in the TRAQ-SB questionnaire as initially administered and $p$ -values for the association of the SB TRAQ with demographic and clinical variables.

3.1 Factor analysis

Initially, the factorability of the 12 TRAQ-SB items was examined. Results of the factor analysis revealed eleven items loaded onto one factor, with almost all items loadings $\geqslant$ 0.7. The single factor with 11 items explained 62% of the variance. Several criteria for the factorability of a correlation were used. Firstly, it was observed that all items correlated at least 0.3 with at least one other item, suggesting reasonable factorability. Secondly, the Kaiser-Meyer-Olkin measure of sampling adequacy was 0.73, above the commonly recommended value of 0.6, and Bartlett’s test of sphericity was significant ( $p<$ 0.05). The diagonals of the anti-image correlation matrix were also all over 0.5. Finally, the communalities were all above 0.3, further confirming that each item shared some common variance with other items. Given these overall indicators, factor analysis was deemed to be suitable with all 12 items. Initial eigen values indicated that the first factor explained 62% of the variance. The second, third and fourth factors had eigen values just under one, and each explained 4–5% of the variance. Solutions for three, four, and five factors were each examined using Varimax and Oblimin rotations of the factor loading matrix. The one factor solution, which explained 62% of the variance, was preferred because of: (a) its previous theoretical support; (b) the ’leveling off’ of eigen values on the scree plot after one factor; and (c) the insufficient number of primary loadings and difficulty of interpreting the second factor and subsequent factors. There was little difference between the Varimax and Oblimin solutions, thus both solutions were examined in subsequent analyses before deciding to use an Oblimin rotation for the final solution.

3.2 Criterion validity

As shown in Table 4, Pearson correlations of the TRAQ-SB scale scores with the TRAQ overall scale scores and subscale scores demonstrated good criterion validity (TRAQ overall $r=$ 0.74; Pearson correlation coefficients varied from $r=$ 0.68 to $r=$ 0.74, all $p<$ 0.01 among the subscales and the TRAQ-SB scale). Additionally, the TRAQ-SB, as hypothesized, was significantly and positively correlated with age ( $r=$ 0.29, $p<$ 0.01).

Table 3
Factor loadings from TRAQ-SB 12 items

Factor loadings
1.	Do you know how to tell if something is wrong with your shunt (e.g., headache, vomiting, seizures, etc.)?	0.46
2.	Do you tell someone (nurse, doctor or support person) else if you think you have signs that something is wrong with your shunt?	0.52
3.	Do you practice bowel management as recommended (e.g., use of suppositories, enemas, stool softeners, or laxatives as needed)?	0.75
4.	Do you know how to tell warning signs of GI problems (e.g., diarrhea, constipation)?	0.74
5.	Do you take the necessary steps to address GI problems (e.g., tell a nurse, doctor or support person or follow a treatment plan)?	0.74
6.	Do you practice bladder management as recommended (e.g., self-catheterizes on agreed upon schedule)?	0.78
7.	Do you know how to tell if you have a urinary tract infection (e.g., fever, stomach ache, smelly urine, cloudy urine, or blood in urine)?	0.75
8.	Do you take the necessary steps to address bladder problems (e.g., tell a nurse, doctor or support person or follow a treatment plan)?	0.84
9.	Do you take steps to protect your skin from potential damage, pressure sores or infection?	0.76
10.	Do you know how to tell if something is wrong with your skin (e.g., redness, swelling, fever, blister and sores)?	0.7
11.	Do you take the necessary steps to address skin problems (e.g., tell a nurse, doctor or support person or follow a treatment plan)?	0.78
12.	Do you order new equipment when you need it or get your equipment fixed if it needs repairing? (Leave blank if you do not use equipment)	0.3

Table 4

TRAQ-SB scale correlation coefficients, correlation coefficients between the TRAQ and TRAQ sub-scales vs. TRAQ-SB scale

Measures	Correlation coefficient	95% confidence interval		F-test with true value 0			Sig.
		Lower bound	Upper bound	Value	df1	df2
TRAQ overall scale	0.74	0.609	0.831	3.885	89	89	0.00
Managing medications	0.74	0.611	0.831	3.902	89	89	0.00
Appointment keeping	0.68	0.492	0.78	2.989	89	89	0.00
Tracking health	0.72	0.45	0.762	2.763	89	89	0.00
Talking with providers	0.71	0.56	0.809	3.454	89	89	0.00
Managing activities	0.68	0.509	0.787	3.094	89	89	0.00

4. Discussion

The present study extends the literature in supporting youth with spina bifida care in transition to adult care by the development of a new transition readiness tool specific to spina bifida. With input from youth with spina bifida and from multi-disciplinary team of experts in the care of youth with spina bifida, we developed and tested, what became an 11-item scale assessing self-management skills specific to spina bifida. The scale demonstrated good internal reliability with a Cronbach alpha of 0.92. The scale demonstrated good criterion validity, as demonstrated by the 11-item SB specific scale having an overall high correlation of 0.74 with the 20 item TRAQ. Moreover, the SB-specific scale was also positively correlated with age. The finding that both disease-specific and general transition skills do increase with age indicates the skills are mastered with increased exposure by the youth to opportunities to learn these skills and to the emotional and cognitive maturity which also increases with age. The high correlation between the SB specific 11-item scale and the 20-item general TRAQ scale indicate that skills related to self-management develop in concert or may generalize to other transition skills, such as talking with providers, making appointments and managing one’s medications.

Using a Motivational Interviewing framework,providers can tailor their interventions to the particular stage of change of the individual youth and help them incrementally adopt self-management skills. For example, if a youth ranks them self as pre-contemplation, then the provider can help promote internal motivation by creating discrepancy between the youth current self-management abilities to what will be needed to achieve their future living or education goals (e.g. to leave home or go to college). If the youth has initiated self-management skills, the provider affirms the youth’s current actions and coaches the youth to adopt more advanced skills and jointly set new goals for the youth to practice and enhance their skills. 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 [21]. Future research can assess readiness for change over time to inform clinicians on the “best" time for transfer to adult oriented healthcare services. Expanding evidence of validity may include construct validity with additional measures of transition readiness. This instrument may be used to evaluate progress across pediatric and adult health care environments to determine what is successful transition. Further testing to establish linkage between coaching and level of change may be helpful to promote successful transition.

5. Conclusion

In order to support self-management in youth with spina bifida and prepare them to transition to adulthood and adult care, there is an ongoing need for the development of accurate and reliable transition readiness measures that are disease specific [22, 23, 24, 25]. Results of our analyses indicated that the TRAQ-SB demonstrated good internal reliability and criterion validity as evidenced by strong correlation with age and the validated TRAQ measure. The TRAQ-SB can be a useful tool for providers to assess transition readiness and help youth with Spina Bifida achieve independence and competent self-management.

Footnotes

Conflict of interest

The authors have no conflict of interest to report.

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The reliability and validity of a newly developed spina bifida-specific Transition Readiness Assessment Questionnaire: Transition Readiness Assessment Questionnaire-supplement (TRAQ-SB)

Abstract

PURPOSE:

METHODS:

RESULTS:

CONCLUSIONS:

Keywords

1. Background

2. Methods

2.1 Questionnaire development

2.2 Sample

2.3 Measures demographic variables

2.4 Statistical analysis

Table 1 Demographic, clinical and bivariate statistics for the TRAQ-SB scores

3.1 Factor analysis

3.2 Criterion validity

Table 3 Factor loadings from TRAQ-SB 12 items

5. Conclusion

Footnotes

Conflict of interest

References

Table 1
Demographic, clinical and bivariate statistics for the TRAQ-SB scores

Table 3
Factor loadings from TRAQ-SB 12 items