Family Environment, Social Support, and Health-Related Quality of Life in Adolescents Following Kidney Transplant.

BACKGROUND: Kidney transplantation is the treatment of choice for pediatric end-stage renal disease. Transplant recipients often have better neurocognitive, academic, and health-related outcomes. While there is some evidence that health-related quality of life (HRQOL) improves following kidney transplant, other studies have found adolescent transplant recipients report lower overall HRQOL than healthy peers. Current research has focused on individual-level factors affecting adjustment to organ transplant, warranting examination of HRQOL from a systems perspective. Family environment and social support contribute to a system of proximal relationships that are crucial in adolescents' development, making them important factors to study in relation to HRQOL post-transplant. METHODS: The current study utilized archival data of adolescent renal transplant patients who completed surveys about their family environment, social support, and HRQOL during routine transplant clinic visits. RESULTS: Family cohesion, as well as social support from parents, classmates, and people in school, were positively correlated with HRQOL. Social support from people in school uniquely predicted variance in HRQOL, beyond the contribution of overall family environment after controlling for demographic factors. Relative to comparable adolescent samples, transplant recipients reported more optimal overall family environment, greater social support from teachers, and lower social support from close friends. CONCLUSION: Psychosocial interventions for adolescent kidney transplant recipients may be enhanced by collaborating with school professionals and further bolstering strengths in the family environment. Kidney transplant recipients may benefit from long-term intervention, as decreased HRQOL appears to persist years post-transplant.

Illness perceptions and beliefs about medication: impact on health-related quality of life in adolescent kidney transplant recipients.

Adolescents diagnosed with chronic kidney disease (CKD) who undergo kidney transplantation have to adjust to pervasive effects of chronic illness and life-long treatment maintenance, alongside normative developmental stressors. The way in which adolescent transplant recipients experience and think about their illness as well as their medication regimen can be a crucial factor impacting psychosocial outcomes. Participants were 26 adolescent kidney transplant recipients (µ = 16.8 years, σ = 1.69 years) who completed self-report surveys during a clinic visit. Multiple linear regressions were used to investigate whether adolescents' beliefs about medications and attitudes and perceptions of their illness are associated with their overall quality of life. Adolescents' negative illness perceptions contributed to lower transplant-specific health-related quality of life ratings (ΔR2 =.305, p < .01). Additionally, adolescent beliefs about their specific medication regimens (ie, personal medication concerns) (ΔR2 =.342, p < .01), and general beliefs about medication use (ie, harm, overuse) (ΔR2 =.241, p < .05) also contribute significantly to the variance in their overall quality of life ratings. Adolescent transplant patients in older grades and those in special education endorsed lower quality of life. Cognitive components (eg, beliefs, perceptions) of an adolescent kidney transplant recipient's experience contribute to transplant-related quality of life outcomes. This highlights a point of intervention where cognitive change interventions may be utilized and efficacious in improving health outcomes.

Longitudinal Impact of Parental Catastrophizing on Child Functional Disability in Pediatric Amplified Pain.

OBJECTIVE: Children with amplified musculoskeletal pain (AMPS) experience significant functional disability, with impairment in their ability to participate in age-appropriate activities of daily living. Parental factors play an important role in a child's pain symptoms and treatment outcomes, with parental pain catastrophizing and protective behaviors linked to several maladaptive outcomes for children. Aims of the current study were to examine how parental pain catastrophizing, child pain catastrophizing, and parental protective behaviors longitudinally impacted functional disability for children with AMPS. METHODS: Archival data were examined from parent-child dyads presenting to a tertiary pain clinic for treatment of AMPS. Over 1 year, parents completed measures assessing the level of pain catastrophizing, common behavioral responses to child pain, and child functional disability. Children completed measures of pain catastrophizing and functional disability. Measures were collected at initial evaluation, 6-months, and 12-months. Latent growth models (LGM) were conducted to examine how to study variables longitudinally impacted the rate of change in child functional disability. RESULTS: Examining a comprehensive LGM of study variables, parental catastrophizing emerged as the sole contributing factor to slower improvement in functional disability. CONCLUSIONS: The strong influence of parental pain catastrophizing on functional disability may relate to parents limiting behaviors that promote adaptive coping in children with pain. As such, parents who catastrophize may benefit from specific interventions to increase their use of adaptive behavioral responses, such as redirecting children to complete functional activities and encouraging the use of positive coping skills for pain-related distress.

Association between day of the week and medication adherence among adolescent and young adult kidney transplant recipients.

Disruption of usual routines may hinder adherence, increasing the risk of rejection. We aimed to compare weekend versus weekday medication adherence among adolescent and young adult kidney transplant recipients, hypothesizing poorer adherence on weekends. We examined data from the Teen Adherence in Kidney transplant Effectiveness of Intervention Trial (TAKE-IT). We assessed the 3-month run-in period (no intervention) and the 12-month intervention interval, considering a potential interaction between weekend/weekday and treatment group. Adherence was monitored using electronic pillboxes in participants 11-24 years followed in eight transplant centers in Canada and the United States. We used logistic regression with generalized estimating equations to estimate the association between weekends/weekdays and each of perfect taking (100% of prescribed doses taken) and timing (100% of prescribed doses taken on time) adherence. Taking (OR = 0.72 [95% CI 0.65-0.79]) and timing (OR = 0.66 [95% CI 0.59-0.74]) adherence were poorer on weekends than weekdays in the run-in (136 participants) and the intervention interval (taking OR = 0.74 [0.67-0.81] and timing OR = 0.71 [95% CI 0.65-0.77]). There was no interaction by treatment group (64 intervention and 74 control participants). Weekends represent a disruption of regular routines, posing a threat to adherence. Patients and families should be encouraged to develop strategies to maintain adherence when routines are disrupted. TAKE-IT registration number: Clinicaltrials.gov registration: NCT01356277 (May 17, 2011).

Examining Uncertainty in Illness in Parents and Children With Chronic Kidney Disease and Systemic Lupus Erythematosus: A Mediational Model of Internalizing Symptoms and Health-Related Quality of Life.

To examine if parent illness uncertainty is indirectly associated with child depression, anxiety, and HRQOL in the CKD/SLE population. Parent-child dyads (N = 31) from outpatient rheumatology and nephrology clinics included children (ages 9-18) diagnosed with CKD (Stage 1, 2, or nephrotic syndrome) or SLE. Parents completed demographic and uncertainty measures and children completed uncertainty, depression, anxiety, and HRQOL measures. This cross-sectional study examined mediational models using the percentile bootstrapping method. Parent uncertainty had an indirect effect on child depression, anxiety, and HRQOL through the mediator, child uncertainty. In other words, parents' illness uncertainty regarding their child's condition correlates to the child's illness uncertainty, which then is associated with the child's mental health and wellbeing. Reverse mediations illustrated that parent uncertainty did not mediate child uncertainty and outcome variables. Results extend previous research by examining parent and child illness uncertainty in understudied conditions (CKD/SLE) and the relationship to outcome variables commonly related to depression (e.g., anxiety and HRQOL). Findings allow health psychologists and medical personnel to understand the impact of uncertainty on the child's wellbeing and HRQOL. Clinical implications, including using specialized interventions to address illness uncertainty, are discussed.

Social Problem Solving and Posttraumatic Growth New Possibilities in Postoperative Breast Cancer Survivors.

The purpose of this study was to examine whether social problem solving (SPS) would relate to posttraumatic growth (PTG), particularly new life possibilities in breast cancer survivors. Participants included 85 women who had undergone surgical intervention for breast cancer at least 6 months prior to study participation. Participant ages ranged from 29 to 88 years. The majority of the sample was White (86%), married (58%), and had received at least some postsecondary education (73%), and all participants spoke English. This IRB-approved cross-sectional study was part of a larger study examining psychosocial protective and risk factors in breast cancer survivors at a university-affiliated private hospital. We hypothesized that better SPS ability would relate to PTG new possibilities above and beyond age, annual income, and time since surgery. Results from this study indicate that a positive problem orientation and lack of impulsive/careless problem-solving style appear to play a role in posttraumatic growth among breast cancer survivors, particularly in developing beliefs about one's ability to positively change one's life. Given the established benefits of active/approach coping in cancer populations, it makes sense that similar interventions such as problem-solving therapy, a cognitive-behavioral therapy that includes challenging and reframing negative beliefs about self and situation, may promote new possibility beliefs in this population.

Medication adherence in pediatric renal transplant patients: The role of family functioning and parent health locus of control.

Children and adolescents with renal disease experience daily social, emotional, and medical challenges. Renal transplantation can help to improve quality of life but requires a lifelong regimen of immunosuppressant medication to maintain health. Adherence to a daily complex regimen can be difficult, particularly for adolescents who are beginning to develop autonomy from caregivers and are faced with a unique set of socio-emotional challenges. This study examines two factors that have shown to influence adherence in other pediatric populations, namely family functioning and parent health locus of control, from mothers' perspectives, in predicting medication non-adherence for adolescents (ages 12-19 years) 1 year post-transplant. Non-adherence was defined as the percentage of missed doses and late doses of the weekly immunosuppressant doses prescribed. Regression results demonstrated that mothers' perceptions of poorer overall family functioning predicted missed medication doses (ΔR2  = 0.383, F(7, 21) = 2.570, P = 0.044) with significant contributions in the domains of problem-solving (ß = -0.795, t(21) = -2.927, P = 0.008) and affective involvement (ß = 0.872, t(21) = 3.370, P = 0.003). Moreover, mothers who perceived that their adolescent had control over his/her health also predicted more missed medication doses (ΔR2  = 0.133, F(1, 27) = 5.155, P = 0.031). Important implications for these findings include implementation of family-based interventions that promote developmentally appropriate skills for adolescents and cultivate emotional involvement within the family.

A Randomized Trial of a Multicomponent Intervention to Promote Medication Adherence: The Teen Adherence in Kidney Transplant Effectiveness of Intervention Trial (TAKE-IT).

BACKGROUND: Poor adherence to immunosuppressive medications is a major cause of premature graft loss among children and young adults. Multicomponent interventions have shown promise but have not been fully evaluated. STUDY DESIGN: Unblinded parallel-arm randomized trial to assess the efficacy of a clinic-based adherence-promoting intervention. SETTING & PARTICIPANTS: Prevalent kidney transplant recipients 11 to 24 years of age and 3 or more months posttransplantation at 8 kidney transplantation centers in Canada and the United States (February 2012 to May 2016) were included. INTERVENTION: Adherence was electronically monitored in all participants during a 3-month run-in, followed by a 12-month intervention. Participants assigned to the TAKE-IT intervention could choose to receive text message, e-mail, and/or visual cue dose reminders and met with a coach at 3-month intervals when adherence data from the prior 3 months were reviewed with the participant. "Action-Focused Problem Solving" was used to address adherence barriers selected as important by the participant. Participants assigned to the control group met with coaches at 3-month intervals but received no feedback about adherence data. OUTCOMES: The primary outcomes were electronically measured "taking" adherence (the proportion of prescribed doses of immunosuppressive medications taken) and "timing" adherence (the proportion of doses of immunosuppressive medications taken between 1 hour before and 2 hours after the prescribed time of administration) on each day of observation. Secondary outcomes included the standard deviation of tacrolimus trough concentrations, self-reported adherence, acute rejection, and graft failure. RESULTS: 81 patients were assigned to intervention (median age, 15.5 years; 57% male) and 88 to the control group (median age, 15.8 years; 61% male). Electronic adherence data were available for 64 intervention and 74 control participants. Participants in the intervention group had significantly greater odds of taking prescribed medications (OR, 1.66; 95% CI, 1.15-2.39) and taking medications at or near the prescribed time (OR, 1.74; 95% CI, 1.21-2.50) than controls. LIMITATIONS: Lack of electronic adherence data for some participants may have introduced bias. There was low statistical power for clinical outcomes. CONCLUSIONS: The multicomponent TAKE-IT intervention resulted in significantly better medication adherence than the control condition. Better medication adherence may result in improved graft outcomes, but this will need to be demonstrated in larger studies. TRIAL REGISTRATION: Registered at ClinicalTrials.gov with study number NCT01356277.

Post-transplant adjustment--the later years.

As survival rates for pediatric solid organ transplantation have continued to improve, researchers and healthcare providers have increasingly focused on understanding and enhancing the HRQOL and psychosocial functioning of their patients. This manuscript reviews the psychosocial functioning of pediatric transplant recipients during the "later years," defined as more than three yr post-transplant, and focuses on the day-to-day impact of living with a transplant after the immediate period of adjustment and early years after surgery. Key topics reviewed include HRQOL, cognitive functioning, impact on the family, regimen adherence, and transition of responsibility for self-management tasks. Overall, pediatric transplant recipients evidence impairment in HRQOL, neuropsychological outcomes, and family functioning as compared to non-transplant recipients. However, the degree of impairment is influenced by a variety of factors including, disease severity, age, solid organ type, and study methodologies. Studies are limited by small samples, cross-sectional design, and the lack of universal assessment battery to allow for comparisons across solid organ populations. Areas for future research are discussed.

Best practices in the pediatric pretransplant psychosocial evaluation.

Assessment of psychosocial functioning is an often-included component of the pretransplant evaluation process. This study reviews several domains of assessment that have been related to post-transplant outcomes across solid organ transplant populations. These include evaluation of patient and family past adherence, knowledge about the transplantation process, and their neurocognitive, psychological, and family functioning. To date, few comprehensive pretransplant evaluation measures have been standardized for use with children; however, several assessment measures used to evaluate the aforementioned domains are reviewed throughout the study. Additionally, this article discusses some developmental, illness-specific, and cultural considerations in conducting the psychosocial evaluation. We also discuss ethical issues specific to the pediatric psychosocial evaluation. Recommendations are advanced to promote a comprehensive evaluation that identifies family strengths and risk factors as they begin the transplant journey.

Physical symptoms, perceived social support, and affect in adolescents with cancer.

Treatment for cancer among adolescents is often more intense and lasts longer than treatment for older or younger patients. It typically causes pain, fatigue, and nausea and affects social and emotional well-being. This study examined the relationships among demographics, physical symptoms, perceived social support from friends and family, and affect (positive and negative) in 102 adolescents (age 13-19) with cancer using correlational analyses. Additionally, perceived social support was explored as a mediator and moderator of the relationship between physical symptoms and affect using regression. Females reported significantly lower friend support and higher negative affect compared to males. Minority participants were more likely to endorse physical symptoms and less negative affect compared to White respondents. Higher report of physical symptoms was significantly related to greater negative affect, whereas higher perceived social support from friends was related to higher positive affect. Adolescents consistently reported high levels of social support from family and friends. Additionally, adolescents tended to report average levels of positive affect and low levels of negative affect compared to healthy populations. No significant mediation or moderation effects were found. This research highlights that females and minorities, and those with greater physical symptoms, may be more vulnerable to poor adjustment to cancer during adolescence. However, overall this study lends support to the notion that adolescents with cancer are an especially resilient population, as these patients endorsed generally high levels of social support and positive affect, with low levels of negative affect.

Medication beliefs and perceived barriers in adolescent renal transplant patients and their parents.

Understanding patient beliefs about medications and perceived barriers is important for optimal medical management. Differentiating adolescent views from parents' perceptions would enhance care by increasing communication about regimens and reducing obstacles. This study explored beliefs about medications and perceived barriers among 40 adolescent kidney transplant patients and their parents. Younger adolescents reported greater concern about medication harmfulness (t(38) = 2.190, p < 0.05) and more barriers, particularly for practical problems including forgetfulness, organization, and coordination (t(38) = 2.049, p < 0.05). Fathers with a lower education reported their children having greater challenges with medications due to taste and size (t(37) = 2.933, p < 0.01). Families with incomes in the low and high levels expressed that their children need more medication reminders (F (2, 35) = 7.815, p < 0.005), and adolescents from lower-income families perceived medication to be more harmful (F (2, 36) = 3.815, p < 0.05). Adolescents expressed challenges with practical aspects of medication taking, whereas parents were more focused on medications being necessary for their health. Adolescent renal patients experience challenges to medication management that may differ from their parents, findings that can help tailor interventions to improve medication management.

The experience of secondary traumatic stress upon care providers working within a children's hospital.

This study examined the impact of routine occupational exposure to traumatic aspects of child illness, injury, and medical treatment upon care providers working within a children's hospital. Three hundred fourteen providers completed a demographic data sheet and four questionnaires. Results suggested overall that the level of Compassion Fatigue in this sample was similar to a trauma worker comparison group. In addition, 39% of the sample was at moderately to extremely high risk for Compassion Fatigue, and 21% was at moderate to high risk for Burnout. Burnout and Compassion Fatigue were related to type of profession and length of employment. Various dimensions of empathy were related to both Burnout and Compassion Fatigue. Regression analyses indicated that years in direct care and greater blurring of caregiver boundaries were predictive of greater Burnout and Compassion Fatigue. There is a need to further refine the assessment of occupational exposure to potential traumatic aspects of care within pediatric hospital settings and link assessment to prevention and intervention efforts.

Eliciting accurate reports of adherence in a clinical interview: development of the Medical Adherence Measure.

Nonadherence is a major public health concern but reliable assessment methods are limited. The Medical Adherence Measure (MAM) was designed as a semi-structured clinical interview to elicit comprehensive and accurate responses from patients regarding adherence during the course of standard clinical care. The measure was developed in three phases and administered to 219 pediatric patients (ages 1.3-23) and/or their parents to assess the content, clinical utility, and ease of use. The MAM has three general regimen domains (medication, diet, clinic attendance) and several treatment specific modules. Items assess knowledge of the prescribed regimen, self-reported adherence, organizational system used to manage the regimen, and perceived barriers to optimal management. The MAM is a screening tool that assists providers in identifying patients at risk for adherence problems, assessing the extent of nonadherence, and targeting specific barriers to care in interventions. The interview emphasizes a supportive patient-provider relationship with the goal of improving patient care.

Perceived barriers to adherence among adolescent renal transplant candidates.

Non-adherence to medical regimens is a ubiquitous hindrance to quality health care among adolescent transplant recipients. Identification of potentially modifiable barriers to adherence when patients are listed for organ transplant would help with early intervention efforts to prepare adolescents for the stringent medication regimen post-transplant. Fifty-six adolescents listed for a kidney transplant, mean age 14.27 (s.d. = 2.2; range 11-18 yr), 73.2% male, 62.5% Caucasian participated in a semi-structured interview, the Medical Adherence Measure, to assesses the patient's knowledge of the prescribed regimen, reported adherence (missed and late doses), the system used to organized medications, and who holds the primary responsibility over medication management. Better knowledge of the medication regimen was associated with fewer missed doses (r = -0.48, p < 0.001). Patients who perceived more barriers had more missed (r = 0.38, p = 0.004) and late (r = 0.47, p < 0.001) doses. Patients who endorsed "just forget," the most common barrier (56.4%), reported significantly more missed (z = -4.25, p < 0.001) and late (z = -2.2, p = 0.02) doses. Only one-third of the transplant candidates used a pillbox to organize medications but these patients had significantly better adherence, z = -2.2, p = 0.03. With regard to responsibility over managing the regimens, adolescents missed fewer doses when their parents were in charge than when they were solely responsible, z = -2.1, p = 0.04. Interventions developed to prepare transplant candidates for a stringent post-transplant regimen need to focus on ensuring accurate knowledge of as simple a regimen as possible. Use of an organized system such as a pillbox to establish a routine and facilitate tracking of medications is recommended with integration of reminders that may be appealing for this age group. Although individuation is developmentally normative at this age, parent involvement seems critical until the adolescent is able to manage the responsibility more independently.

The challenges of using medication event monitoring technology with pediatric transplant patients.

This study investigated the advantages and challenges of using Medication Electronic Monitoring System (MEMS) technology to examine adherence among pediatric kidney transplant patients. Twenty-nine patients participated in the study, with a mean age of 14.03 yr (SD = 3.34, range 8-19 yr). Patients were given a MEMS bottle and cap to be used with their primary immunosuppressant medication over a three-month period. Issues related to study eligibility, recruitment, and participant maintenance were recorded. Patients completed the Debriefing Form regarding their experiences with the MEMS. Many younger patients were on liquid medications affecting the feasibility of this technology across ages. Acceptance of this technology proved difficult, as many patients either declined upfront or dropped out because they did not want to use the MEMS. Of the final sample, 41% found transferring medication into the MEMS bottle difficult and 27.2% reported that the MEMS was a burden and/or difficult to transport. Another 22% of the patients reported that using the MEMS changed their routine, and 10.2% worried about missing their medications. Pediatric transplant centers should be cautious about solely relying on MEMS to examine adherence until more research is conducted on the feasibility, acceptance, and utility of this technology.

Psychosocial evaluation of candidates for living related kidney donation.

Living kidney donation has raised practical and ethical questions since renal transplantation became possible 50 years ago. Nevertheless, living donors are a common source for badly needed organs in the pediatric population. The safety and well being of the living donor are important concerns. Among the risks of living donation are those of a psychological and social nature. To protect these donor interests, psychosocial evaluations of donors are done at some transplant centers, but there is a lack of consistency regarding standardization of the evaluation, the content of the evaluation, and the role of the interviewer. Goals of the overall living donor evaluation for kidney transplantation at The Children's Hospital of Philadelphia, and the components of the psychosocial evaluation protocol in particular, are presented. The protocol's strengths are discussed, including the standardization of evaluations for all potential donors; the broad spectrum of psychosocial domains assessed; the psychometric measures administered; the systematic handling of negative results and some donors' desire to opt out; and the protection of confidentiality. Future directions with regard to long-term psychosocial outcomes and research protocols are discussed.

An integrative model of pediatric medical traumatic stress.

OBJECTIVE: To guide assessment and intervention for patients and families, a model for assessing and treating pediatric medical traumatic stress (PMTS) is presented that integrates the literature across pediatric conditions. METHODS: A model with three general phases is outlined--I, peritrauma; II, early, ongoing, and evolving responses; and III, longer-term PMTS. Relevant literature for each is reviewed and discussed with respect to implications for intervention for patients and families. RESULTS: Commonalities across conditions, the range of normative responses to potentially traumatic events (PTEs), the importance of preexisting psychological well-being, developmental considerations, and a social ecological orientation are highlighted. CONCLUSIONS: Growing empirical support exists to guide the development of assessment and intervention related to PMTS for patients with pediatric illness and their parents. The need for interventions across the course of pediatric illness and injury that target patients, families, and/or healthcare teams is apparent. The model provides a basis for further development of evidence-based treatments.