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.
Research suggests that complementary and alternative medicine (CAM) is often used to improve general health and well-being. Asian Americans constitute the third-highest racial/ethnic group to use CAM ...and currently make up the largest group of new immigrants in the United States. However, little is known about the correlates of CAM among Asian Americans, presenting barriers to open communication with providers and integrative health care. The present study aimed to document beliefs associated with CAM, types of CAM used, and any differences across immigrant generation status. The study also examined whether acculturation predicted CAM-associated beliefs and CAM use among Asian Americans. In this cross-sectional study, participant demographics and immigrant generation status, CAM use, CAM-related beliefs, and level of acculturation were collected online via self-report measures from a sample of 329 Asian Americans, ages 20-70 years old. Results indicated that approximately 87% of Asian Americans used CAM. The most commonly held beliefs associated with CAM focused on promoting overall well-being. CAM-related beliefs and amount of use were not significantly different among immigrant generation levels. Acculturation, however, predicted both CAM-associated beliefs and use. Specifically, strong affiliations with either heritage culture or host culture predicted pro-CAM beliefs (p < .001). Higher acculturation to the host culture was associated with more CAM practices used (p < .01). Increased awareness of CAM beliefs and factors related to CAM use in Asian Americans may promote patient trust, improved communication, and enhanced care such that providers may be more equipped to screen for nonconventional practices.
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Asian Americans currently make up the largest group of new immigrants in the United States and are one of the largest consumers of complementary and alternative medicine use (CAM). Generation status, level of acculturation, and health-related beliefs were examined as possible factors influencing attitudes toward and engagement in CAM. Higher acculturation levels predicted pro-CAM beliefs and the use of more CAM therapies, while no differences were found in generational status in either CAM-related beliefs or use.
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CEKLJ, FFLJ, NUK, ODKLJ, PEFLJ
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.
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.
Unblinded parallel-arm randomized trial to assess the efficacy of a clinic-based adherence-promoting intervention.
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.
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.
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.
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.
Lack of electronic adherence data for some participants may have introduced bias. There was low statistical power for clinical outcomes.
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.
Registered at ClinicalTrials.gov with study number NCT01356277.
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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.
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.
Examining a comprehensive LGM of study variables, parental catastrophizing emerged as the sole contributing factor to slower improvement in functional disability.
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.
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.
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 (β = −0.795, t(21) = −2.927, P = 0.008) and affective involvement (β = 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.
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.
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).
Adolescent and young adult kidney transplant recipients show poorer medication adherence on weekends than weekdays. See the editorial by Shemesh et al on page 7.