Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 8 (2015) 13–22 DOI 10.3233/PRM-150314 IOS Press

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The relationship of health care transition readiness to disease-related characteristics, psychosocial factors, and health care outcomes: Preliminary findings in adolescents with chronic kidney disease Nicole Fentona, Maria Ferrisb,∗ , Zion Koc , Karina Javalkara and Stephen R. Hooperd a

University of North Carolina-Chapel Hill, Chapel Hill, NC, USA Department of Pediatrics, University of North Carolina School of Medicine, Chapel Hill, NC, USA c School of Medicine, East Carolina University, Greenville, NC, USA d Departments of Allied Health Sciences and Psychiatry University of North Carolina School of Medicine, Chapel Hill, NC, USA b

Accepted for publication: 10 February 2014

Abstract. PURPOSE: The current study utilized the Disability-Stress-Coping Model to conceptualize how disease-related risk factors (disease severity, age of diagnosis, and disease burden) and psychosocial resilience factors (coping efficacy, family cohesion, and quality of life) influence health care transition (HCT) readiness when controlling for age and disease severity [1]. Additionally, the impact of low HCT readiness on emergency room visits and medication adherence was examined. Methods: The sample was comprised of 41 adolescents with chronic kidney disease (CKD) who ranged in age from 13 to 18 years (Mean = 15.7). Multiple regression analyses were conducted. RESULTS: None of the disease-related factors were associated with HCT readiness. Of the psychosocial factors, only family cohesion was a significant predictor and accounted for 10% unique variance. Transition readiness was significantly related to both the number of self-reported emergency room visits and medication adherence such that high readiness was related to fewer visits to the emergency room and better medication adherence; these variables accounted for 6.4% and 14.9% of the unique variance respectively. CONCLUSION: These findings suggest that disease-related risk factors may be less critical to predicting transition readiness than resilience factors such as family cohesion. Additionally, when adolescents have low transition readiness they are likely to experience significant negative health outcomes. Keywords: Health care-related transition, transition readiness, factors affecting transition, chronic kidney disease

1. Introduction ∗ Corresponding author: Maria Ferris, Division of Pediatric Nephrology, Department of Medicine and Pediatrics, University of North Carolina School of Medicine CB# 7155, Chapel Hill, NC 27599-7155, USA. Tel.: +1 919 66 2561, Ext 237; E-mail: maria_ [email protected].

With the increased sophistication of medical care over the last several decades there has been a significant increase in the survival rates of children with a range of chronic illnesses. Many conditions that were

c 2015 – IOS Press and the authors. All rights reserved 1874-5393/15/$35.00 

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N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease

previously fatal in childhood and rarely seen in the realm of adult medicine are now making their way into the adult health care system. The term Health Care Transition (HCT) readiness refers to the process of adolescents and young adults with a physical or medical condition acquiring high quality and developmentally appropriate knowledge and skills needed to successfully make the transition from pediatric to adult healthcare [2]. During this HCT preparation process, adolescents and emerging adults with a chronic illness or physical disability assume increasing responsibility for managing their health care needs. Parental involvement tends to decrease and youth begin to prepare for the increased independence, responsibility, and self-advocacy functions that are expected by the adult healthcare system [3]. Some patients do well with this transfer into adult healthcare, but many falter or are lost to follow-up, at times with devastating consequences. The consequences of low HCT readiness can include disease progression and non-adherence [4]. Chronic kidney disease (CKD) is one illness that can have particularly poor outcomes if consistent disease management is not maintained. The numbers of patients with chronic kidney disease as well as the survival rate over the past decade have been rising such that youth with even the most severe stage of kidney disease, end-stage kidney disease have an increased 10-year survival rate [5]. As a result of this increased survival rate, there are currently an estimated 4,000 kidney transplant recipients and 2,000 patients on dialysis who are in the transition age range [6]. The transition needs of adolescents and emerging adults with CKD are growing in tandem with the increases in this population, but the available empirical evidence to guide these HCT efforts is limited. It is important to understand what factors are critical to predicting HCT readiness in adolescents with CKD. Bell et al. [7] provide an overview of the factors that are critical to predicting HCT readiness and propose that these factors include: medical complexity, comorbidity, medical adherence, family, peers, the health care transition team, and communication. This review included factors that could be conceptualized as both risk factors for poor HCT readiness as well as resilience factors that may facilitate high levels of HCT readiness. However, at that time limited empirical data were available to support or refute the importance of these factors in the HCT process for adolescents with CKD. It has been proposed that when trying to understand a complex phenomenon such as HCT readiness,

conceptual models should be employed to provide a framework for understanding the key variables. One model that has been used across a variety of pediatric populations is the Disability-Stress-Coping Model [1]. This model proposes that both risk and resilience factors influence adjustment. One critical type of adjustment for adolescents with a chronic illness is their ability to adjust to the increased responsibility, selfefficacy, and knowledge required as they prepare for the transition into adult healthcare. In this regard, the risk factors for young adults with a chronic illness may be related to the illness itself (disease severity, age at diagnosis, and disease burden). The resilience factors included in the Disability-Stress-Coping Model are stress processing factors (coping efficacy), socialecological factors (family cohesion), and intrapersonal factors (quality of life [1]). By better understanding what risk and resilience factors facilitate or hinder HCT readiness, health care providers can work to enhance these characteristics in their patients with CKD, other chronic illnesses, or physical disabilities more generally. 1.1. Disease related risk factors and health care transition Disease-related variables such as age at diagnosis, disease burden, and disease severity may contribute to HCT readiness and the subsequent quality of health care from an adult provider [8,9]. Specifically, it has been shown that a child’s medical severity is significantly correlated with their adjustment [10]. Similarly, other studies have found that disease severity is a significant negative predictor of psychological adjustment and behavioral problems [11,12]. As HCT readiness can be conceptualized as one form of adjustment it may be that those with higher disease severity have lower levels of HCT readiness. Other studies, however, have found disease severity to be a poor predictor of adjustment [13]. Although it has been shown that disease characteristics are important factors in predicting adjustment, alone they may give an incomplete picture of the factors influencing an adolescent’s HCT readiness. To have a complete picture of the factors impacting HCT readiness it may be that psychosocial factors should also be considered [14–17]. 1.2. Psychosocial resilience factors and health care transition The incomplete picture of the impact of diseaserelated factors on HCT readiness and overall adjust-

N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease

ment has lead researchers to begin examining the wide range of psychosocial variables that may influence transition and associated adjustment. To date, the majority of this research has focused on identifying the factors that may place an individual at increased risk for poor adjustment [12]. Resilience factors that may lead to positive adjustment have been overlooked to date [12]. Three such critical resilience factors are coping efficacy, family cohesion, and quality of life. It may be that adaptive coping mechanisms, a cohesive family unit, and a perceived high quality of life each facilitate the development of higher levels of HCT readiness for the adolescent with CKD [18,19]. Adolescents with chronic medical conditions have ongoing stressors related to their illness that make coping strategies particularly critical to their day-today adjustment and their overall HCT readiness [13]. There are many different coping strategies that have been identified such as behavioral coping (overt acts in which an individual engages to deal with stress) and cognitive coping strategies (adolescents must access internal emotions and then regulate them). In both healthy adolescents and young adults with a chronic illness, some coping strategies change over time while others remain constant [13]. For example, cognitive coping increases with age, whereas behavioral coping develops early and remains consistent across ages. The stability of the coping style is influenced by developmental factors [20]. While the frequency of specific coping strategies has been shown to change over time, coping efficacy is an indication of how effective coping strategies are in helping the individual manage their problem regardless of the person’s age. As adolescence is such a variable developmental period, it may be that coping efficacy is an effective way to understand coping across a developmental period. In fact, coping efficacy has been shown to predict many types of adjustment such as the adjustment to dialysis and physical symptoms [21]. Despite the fact that coping efficacy is a useful way to examine the utilization of various coping mechanisms, it has not been examined in HCT readiness. An adolescent’s ability to cope with their CKD may be important in understanding their overall adjustment; however, the adolescent is not the only person who must adjust to their illness. Rather, the family of an adolescent with CKD must adapt to an increase in the number of doctors’ appointments, financial strain, and increased burden on the family’s resources. The family serves as an important proximal factor in a child’s life [22]. As an important factor in the child’s environ-

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ment, it has been suggested that the adjustment of children to a stressor may be influenced by the adjustment of the family around them [23,24]. This association between family functioning and child adjustment has been demonstrated across many pediatric chronic illness populations. Findings indicate that families with high flexibility, integration into a social network, clear family boundaries, effective communication, cohesion, and positive attributions are all predictors of a child’s well-being [14,23–26]. Family factors have received less attention in pediatric CKD, and their contributions to HCT readiness have not been examined. In addition to family factors, overall quality of life has been targeted as a key psychosocial factor contributing to HCT readiness. Many individuals with a chronic illness or physical disability have a lower perceived quality of life, and this is no different for individuals with CKD [27]. As children move from late childhood to early adolescence, peer relationships and peer comparisons become particularly salient, a potential source of psychosocial difficulty for adolescents with CKD [28]. Social functioning may be especially difficult for adolescents with CKD because of the rigidity of their medical regimen. They may become self-conscious about taking their medications in front of friends, have difficulty adhering to dietary and fluid restrictions, and become embarrassed by medication side effects such as obesity or acne. Some patients experience fatigue or nausea, and those on dialysis may be uncomfortable in social situations because of the disfiguring effects of dialysis catheters or fistulas, or because of the activity restrictions these devices impose. Quality of life is an important psychosocial factor reflecting the degree of adjustment in individuals with chronic illnesses or physical disabilities, but its relationship to HCT readiness in pediatric CKD remains to be determined. 1.3. Transition readiness and health-related outcomes While HCT readiness is typically viewed as an outcome variable, it also has significant value as a predictor variable for health related outcomes. Continuity of care, an important outcome of HCT readiness, has been shown to play a role in emergency health care utilization. Specifically, patients with lower continuity of care had increased emergency room usage [29]. Other studies have shown that when participants have higher levels of disease self-management, one aspect of HCT readiness, they have fewer visits to the emergency room [30]. In addition to emergency room vis-

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N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease

its, medication adherence is another important health related outcome. Studies estimate the non-adherence rate for pediatric populations to be approximately 50– 55%, and it may be even higher in patients with CKD who do not experience the short-term consequences of non-adherence [31]. If non-adherence is so high within the pediatric CKD population, the problem will likely worsen once the transition to adult health care occurs [2]. No one to date has examined the potential impact of HCT readiness on medication adherence. Understanding the transitional needs of pediatric patients prior to entering the adult health care system becomes central in determining a successful HCT (i.e., increasing adherence, reducing emergency care needs). Available evidence in adolescents with CKD, however, has not examined the important role that transition readiness may be playing in predicting health care outcomes. 1.4. The current study The Disability-Stress-Coping Model asserts that both disease-related factors and psychosocial characteristics would be critical to an individual’s adjustment [1]. While adjustment can be defined in many different ways, one key type of adjustment for children and adolescents with a chronic illness is HCT readiness. Based on this model the first research questions of this study was to better understand the role of disease characteristics on transition readiness. Specifically, it was hypothesized that adolescents with less severe disease characteristics (as measured by less disease severity, disease burden, and older age at diagnosis) would have higher levels of HCT readiness. The second aim of this study was to examine how psychosocial factors may impact the degree of HCT readiness. Specifically, it was hypothesized that adolescents with more adaptive psychosocial characteristics (as measured by higher family cohesion, quality of life, and coping efficacy) would have higher levels of HCT readiness. Additionally, it remains important to understand the consequences that occur when an adolescent has low levels of HCT readiness. Intuitively, there are many implications for adolescents with low levels of knowledge about their illness and low self-efficacy, but few studies have sought to quantify exactly how HCT readiness is related to emergency health care use and medication adherence. Consequently, the third aim of this study was to use HCT readiness as a predictor of health outcomes. It was hypothesized that adolescents with low

levels of HCT readiness would have more self-reported emergency room visits and be less adherent to their medication regimens.

2. Methods 2.1. Participants Adolescents and emerging adults were recruited from the outpatient Pediatric Kidney Clinic at a large southeastern university medical center in the USA. Adolescents, 13 to 18 years of age, with stage 2 CKD or above were eligible to participate. The sample was comprised of 41 adolescents who had a mean age of 15.7 years (SD = 1.8 years). The sample was 68% male, 71% ethnic minority (56% African American, 15% Hispanic), and 49% were from single-parent families. Approximately 46% had private insurance, reflecting at least a low-middle level of socioeconomic status, while about 54% had public insurance or no insurance coverage. The participants’ breakdown by CKD stage was: 63% at stage 2 or 3, 10% at stage 4, and 27% with CKD 5 (no transplant recipients were included), with 71% having Glomerular Disease. The mean age at diagnosis was 10 years, and participants were taking an average of 8.1 (SD = 5.4) medications per day, with this variable ranging widely but directly with disease severity (i.e., patients with more severe CKD were taking more medications). 2.2. Procedure Potential participants were approached about the study once they were in the examination room, and appropriate assent and/or consent was obtained in accordance with university IRB policies and procedures. The participants completed scales that asked information about their family cohesion, coping efficacy strategies, quality of life, emergency room utilization, and adherence. These measures were administered on a computer using a web-based data collection program. HCT readiness was assessed via a semi-structured interview, which was administered to the participants by a trained health care provider. The instrument administration time varied from 20 to 35 minutes. The additional variables of disease severity, disease burden, age at diagnosis, and demographics were extracted from the participant’s medical charts. Exclusion criteria included non-English speaking families, the presence of a significant cognitive or developmental delay as deemed by the health provider, and individuals who were not living with their parents or legal guardian.

N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease

2.3. Measures Disease characteristics were conceptualized as having three components: disease severity, disease burden, and age at diagnosis. Disease severity was determined by the level of kidney function (glomerular filtration rate) and its associated stage of kidney disease [32]. Disease burden was defined by the number of medications being taken at the time of participation in this study. Using the number of medications as a proxy for disease burden is a commonly used approach across studies [33,34]. Age of diagnosis was obtained by reviewing the medical record. Psychosocial functioning was conceptualized as having three components: family cohesion or how well the family unit as a whole works together; coping efficacy or how well the adolescent copes with stressors related to their illness; and quality of life or how satisfied the adolescent was with various aspects of their life. Family cohesion was measured using the cohesion subscale of the Family Relationship Index [35]. Cohesion in this scale is defined as the degree of commitment, help, and support family members provide for one another. This self-administered subscale consists of 9 true/false items. In the Journal of Pediatric Psychology’s article on evidence based assessment of family functioning, the FRI received a rating of well-established, the highest rating [36]. The cohesion subscale shows adequate internal consistency, reliability, and stability over time [37]. The subscales from the FRI have been used with families of children who have asthma, diabetes, juvenile rheumatoid arthritis, recurrent abdominal pain, sickle cell disease, and those undergoing a bone marrow transplant [36]. Coping efficiency was determined by use of the KidCope Scale [38]. This self-report 10 question scale assesses the individual’s coping strategies for managing a self-identified stressor resulting from their chronic illness. The coping styles consists of cognitive restructuring, problem solving, social support, positive emotional regulation, distraction, blaming others, wishful thinking, resignation, and negative emotion regulation. The coping strategies that the individuals endorse are used to create a frequency score (how often did you do this?) and an efficacy score (how much did this help?). The frequency responses are given on a 4-point Likert-type scale ranging from “not at all” to “almost all the time” and the efficacy responses are given on a 5-point Likert-type scale ranging from “not at all” to “very much”. Summing the efficacy scores for each of the coping styles provides a total coping efficacy

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score. Several studies using a number of different samples, including children with medical illnesses, have been conducted to establish the reliability and validity of this measure. Reliability scores have ranged from moderate (0.41) to fairly high (0.83 [38]. Finally, quality of life was assessed using the Pediatric Quality of Life Inventory; version 4.0 (PedsQL) [39]. This selfadministered, 23 question measure was designed to assess the impact of disease and treatment on an individual’s physical, emotional, social, and school functioning. A score for overall psychosocial functioning can be obtained by averaging the emotional, social, and school functioning subscales. The questionnaire includes a list of difficulties that the child may have encountered over the past month, and they are asked to respond how much of a problem that item has been for them. The responses range on a 5-point Likerttype scale from “never” to “almost always.” The PedsQL has been used in a wide range of pediatric populations [40,41]. This questionnaire received a rating of well-established in the Journal of Pediatric Psychology’s review of evidence based assessments (α = 0.68–0.90) [42]. Transition readiness was assessed using the UNC TRx ANSITION Scale [43]. This 33 question semistructured interview is administered by a health care provider. This scale assesses both disease self-efficacy (what the person thinks they can do to manage their illness) as well as disease knowledge. The scale includes ten domains including: knowledge about their medications, disease, nutrition, insurance, reproductive health, disease self-management, and self-activation. Adequate reliability has been found (kappa 0.70). A total score is calculated that reflects overall HCT readiness. Health outcomes were conceptualized as having two key factors, emergency room visits and medication adherence. Medication adherence was assessed using The Medication Adherence Measure [44]. Participants first reported the name of each medication that they were prescribed, and if they could not remember all their medications, they were reminded of them (obtained by chart review). Next, participants, self-reported, how many doses of each medication they missed in the previous seven days. The number of missed doses, divided by the number of prescribed doses, times 100, yielded the percentage of missed doses. The MAM is one of the most frequently used methods to assess self-reported adherence. Data on the MAM suggest adequate convergent validity and reliability with established measures of non-adherence [45]. The number of

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N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease Table 1 Sample characteristics for adolescents with chronic kidney disease (N = 41) Factor Demographic Characteristics Males White African American Age Private insurance Kidney transplant recipients Single-parent household Disease Characteristics CKD stage (disease severity) Stage 2 CKD Stage 3 CKD Stage 4 CKD Stage 5 CKD Medications per day (disease burden) Age at diagnosis Glomerular Disease Psychosocial Functioning KidCope coping efficacy Average coping efficacy score Family Relationship Index Cohesion subscale Expressiveness subscale Conflict subscale Pediatric quality of life scale Physical quality of life Social quality of life Emotional quality of life School quality of life Psychosocial functioning Health Care Outcomes UNC TRx ANSITION ScaleTM Medication non-adherence # of ER visits in past year

emergency room visits was assessed using a question from the Family information form [46] from the PedsQL. This self-report questionnaire asks the patient demographic information as well as the number of emergency room visits they had in the past 12 months. After reporting the number of emergency room visits, participants were asked to list the reason why they went to the emergency room. In this study, the number of emergency room visits was meant to capture medical emergencies and not routine care. Therefore, if participants listed reasons such as a cold or a routine shot, these were excluded from the total number.

3. Results 3.1. Power analysis The power analysis was calculated in a multiple linear regression framework. Using SAS software, a sam-

Number (%)

Mean (SD)

Observed range

28 (68%) 10 (24%) 23 (56%) − 19 (46%) 20 (49%)

− − − 15.7 (1.8) − − −

− − − 13–18 − − −

19 (46%) 7 (17%) 4 (10%) 11 (27%) − − 29 (71%)

− − − − 8.1 (5.4) 10.0 (4) −

− − − − 1–24 Prior to birth-17 −

−

3.0 (.80)

1–5

− − −

7.4 (1.4) 5.3 (1.6) 2.5 (1.9)

4–9 2–8 0–8

− − − − −

82.7 (17.2) 90.5 (10.1) 76.5 (17.5) 70.7 (17.6) 79.2 (11.8)

34–100 60–100 50–100 25–100 50–100

− − −

7.7 (1.4) 9.9% (17.5%) 1.1 (1.5)

4.3–10 0–80% 0–10

ple size of 41 should be sufficient to obtain power of 0.80 for the current model, assuming an alpha of 0.05 and an effect size of 0.5. 3.2. Descriptive statistics Table 1 provides the means, standard deviations, and ranges for the participants’ demographic variables, disease-related characteristics, psychosocial functioning variables, and health care outcomes. The psychosocial factors revealed a fairly welladjusted sample. The reported level of family functioning was high and the adolescents reported an overall average quality of life. Coping efficacy on the KidCope Scale fell within the average range. As for the health care outcomes of interest, the overall sample demonstrated a high HCT transition readiness score, self-reported approximately one emergency room visit in the last year (Mean = 1.1 ± 1.5), and missed 9.9% of their medication doses. Overall, when compared to

N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease

β = -.27, p < .05

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Emergency Room Visits

Low Health Care Transition Readiness

β = .42, p < .05

Medication Adherence

Fig. 1. The association of health care transition readiness with emergency room visits and medication adherence.

∗p

Table 2 Results for risk and resilience models a: Risk factors and transition readiness Variable B SE β Disease severity 0.04 0.19 0.04 Disease burden 0.05 0.05 0.21 Age at diagnosis 0.02 0.04 0.07 Age 0.37 0.12 0.48 Insurance status 0.27 0.28 0.15

0.82 0.25 0.64 0.003∗∗ 0.34

b: Resilience factors and transition readiness Coping efficacy 0.28 0.24 0.16 Quality of life 0.95 0.02 0.01 Family cohesion 0.37 0.15 0.37 Age 0.28 0.12 0.35 Insurance status 0.09 0.24 0.05

0.24 0.99 0.02∗∗ 0.02∗∗ 0.70

 0.10, ∗∗ p  0.05, ∗∗∗ p  0.001.

other chronic illness populations, this sample did not reveal any major problems outside of their CKD, perhaps secondary to their relatively milder kidney disease. 3.3. Risk factors and transition readiness To address the first research question, a regression model was used to examine if disease severity, disease burden, and age at CKD diagnosis were predictors of HCT readiness. Both age and insurance status (a proxy for socioeconomic status) were controlled for in this analysis. Although, it was hypothesized that each of these disease-related factors would be significant predictor of HCT readiness, the results showed that none of the disease characteristics significantly predicted transition readiness. Specifically, when age (β = 0.48, p = 0.003) and insurance status (β = 0.15, p = 0.34) were controlled for, neither disease severity (β = 0.04, p = 0.82), disease burden (β = 0.21, p = 0.25), nor age at diagnosis (β = 0.07, p = 0.64) were significant predictors of HCT readiness, F (5, 35) = 3.30, p = 0.02, r2 = 0.32). In this regard, an ado-

lescent with CKD could have high or low levels of disease severity, high or low levels of disease burden, and be diagnosed with their illness recently or when they were a young child, and none of these disease-related factors were going to be related to their HCT readiness. 3.4. Resilience factors and transition readiness The second regression model examined if psychosocial functioning (i.e., coping efficacy, family cohesion, and quality of life) would be significant predictors of HCT. Results from this model revealed that when age (β = 0.35, p = 0.02) and insurance status (β = 0.05, p = 0.70) were controlled for neither coping efficacy (β = 0.16, p = 0.24) nor quality of life (β = 0.01, p = 0.99) were significant predictors of HCT readiness. The model did show the variable of family cohesion to be a significant predictor of overall HCT readiness (β = 0.37, p = 0.02; F (5,35) = 4.80, p = 0.002; r2 = 0.41). Cohesion accounted for 10% of the unique variance in the model. This finding suggests that if there is a sense of unity and togetherness in the family, then the adolescent is more likely to have a higher overall level of HCT readiness. This means that the adolescent with CKD will have more knowledge about their illness and higher levels of disease self-management. 3.5. Transition readiness as a predictor of emergency room visits and medication adherence The third regression model used overall HCT readiness as a predictor of self-reported emergency health care utilization (number of emergency room visits in the last year) and medication adherence while controlling for age and insurance status. This model demonstrated the importance of overall HCT readiness for health care outcomes. Specifically, as can be seen in Fig. 1, overall HCT readiness significantly predicted the number of emergency room visits in the last year,

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N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease

β = −0.27, p = 0.04, such that low HCT readiness was significantly associated with an increased use of emergency room visits. Similarly, overall HCT readiness was significantly related to self-reported medication adherence (β = 0.42, p = 0.03) such that low HCT readiness was significantly related to low medication adherence. HCT readiness accounted for accounted for 6.4% and 14.9% of the unique variance in emergency room visits and medication adherence, respectively. Both age (β = 0.24, p = 0.08) and insurance status (β = 0.05, p = 0.67) were controlled for in these analyses. These results suggest that when adolescents have low disease self-management and knowledge about their illness, they are more likely to end up in the emergency room and less likely taking their medications as prescribed, (F (4,36) = 8.6, p = 0.00, r2 = 0.48).

4. Discussion In accordance with the Disability-Stress-Coping model [15], the current study examined the influence of both risk and resiliency across multiple factors potentially related to HCT readiness in adolescents with CKD. Additionally, this study explored the relationship of HCT readiness with two key health care outcomes including emergency room utilization and medication adherence. Results indicated that none of the disease-related factors were associated with HCT readiness. Of the psychosocial factors, only family cohesion was a significant predictor and it accounted for a significant percent of the overall variance. In contrast, HCT readiness was found to be significantly related to both the number of emergency room visits and medication adherence such that high readiness was related to fewer visits to the emergency room and better medication adherence. Taken together, these findings suggest that a sense of family cohesion is critical when trying to facilitate HCT readiness in adolescents with CKD, and when adolescents with CKD have low HCT readiness they are more likely to experience negative health outcomes. While it was a bit surprising that none of the diseaserelated factors were associated with HCT readiness in this sample of adolescents with CKD [8,11,12], the discovery of family cohesion being a significant predictor was important given its potential malleability. This finding is consistent with prior literature that has noted the importance of family factors in the adjustment of adolescents with a chronic illness [14,23–26].

Not only does this finding suggest that cohesion is an important factor to include in any assessment process, if health care providers encounter a family that lacks a sense of unity or togetherness, it may be important to work to improve the family’s cohesiveness. Helping families to address this issue may help adolescents feel supported so that they can begin to learn more about their condition and the associated health care needs. In this regard, working with professionals trained in family therapy techniques and strategies may prove most useful. It is important to note, though, that this finding accounted for only a portion of the overall variance in HCT readiness, and other factors contributing to this outcome will continue to require scientific scrutiny. The finding that the degree of transition readiness was related to health care outcomes, specifically emergency room use and medication adherence, promotes the importance of developing the HCT readiness of adolescents with CKD. The nature of this relationship was such that low transition readiness was significantly associated with more emergency health care use (visits to the emergency room) and decreased medication adherence. This is consistent with prior research, which has shown that interventions aimed at improving disease self-management and self-efficacy result in reduced emergency health care use and improved medication adherence [47]. This points to the importance of HCT preparation and to its malleability. Health care workers (e.g., nurses, psychologists, physicians, etc.) should encourage the family unit to provide support when adolescents are preparing for HCT, and to strategically address deficiencies and needs as the adolescent moves through the transition process. Having easy access to reliable and valid health care transition measures, and administering them at targeted developmental intervals, will be important in this regard. This continued and strategic assessment of HCT readiness may only be feasible for those individuals that have a medical home. It is unclear how HCT readiness should be facilitated in those without a medical home. The findings from this study provide some of the first empirical data to examine the relationship of disease-related factors and psychosocial characteristics with HCT readiness in adolescents with CKD. Although encouraging, the study also has several limitations that merit discussion. First, these data should be considered as preliminary given the small sample size and that data were ascertained at only one institution. These limitations place constraints on generalizability and did not permit the analyses of specific sub-domains within the HCT readiness scale or more

N. Fenton et al. / Preliminary findings in adolescents with chronic kidney disease

complicated variable interactions and mediation models that may be present. Second, this study used age as a control variable. Patient age may be strongly related to cognitive development and maturity. It may be interesting for future studies to further examine the role of age, cognitive development, and maturity, when predicting HCT readiness. Third, findings were based largely on adolescent self-report and unknown biases may have been present in the rating scale methodology. Obtaining information from multiple informants would be preferable, and future studies may address these concerns. Finally, the study was cross-sectional in nature and therefore the potential bi-directionality of the variables should be noted. Future research should focus on longitudinal observations. In summary, this is one of the first studies to examine the relationship between HCT readiness, diseaserelated factors, psychosocial characteristics, and health -related outcomes in adolescents with CKD. Although the sample size was small, preliminary findings demonstrated a significant relationship between a specific psychosocial factor, family cohesion, and HCT readiness. This is an important malleable variable that should not only be screened and evaluated in adolescents in the HCT phase, but also begs the involvement of professionals trained in family therapy techniques to address these issues. HCT readiness also was used as a predictor variable and demonstrated significant associations with both medication adherence and emergency room visits. In that regard, improving HCT readiness becomes an important goal with respect to improving health care outcomes for all adolescents with CKD. It will be important for these relationships to be replicated across different samples of adolescents with various chronic illnesses or physical disabilities, with perhaps additional variables being included in the theoretical model.

Acknowledgements This investigation was partially funded by the UNC Kidney Center, Victory Junction Camp, and the Renal Research Institute. Also, we would like to express our appreciation to Drs. William “Gus” Conley, William Primack, and Keisha Gibson for their assistance in recruiting participants for this study. Results of this study were presented at the Health Care Transition Special Interest Group Meeting at the 2012 Annual Conference of the Pediatric Academic Society, Denver, Colorado.

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Conflict of interest Stephen R. Hooper has received travel funding from Eli Lilly.

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