673 replacement therapy (dialysis or transplant), residing with parents was associated with higher medication adherence [35] Family socioeco nomic factors can also influence adherence A study of child[.]
35 Psychosocial Adjustment and Adherence to Prescribed Medical Care of Children and Adolescents… replacement therapy (dialysis or transplant), residing with parents was associated with higher medication adherence [35] Family socioeconomic factors can also influence adherence A study of children with CKD in Guatemala found that higher educational attainment among mothers and greater family income were associated with better medication adherence, which was assessed via self-report [68] However, one study involving children with CKD or ESKD and their parents failed to detect an association between caregiver functional word reading literacy and adherence to their child’s medications, diet, or medical appointments [67] Healthcare System Factors To our knowledge, no studies have examined the impact of healthcare system factors, such as insurance coverage or patient-provider communication, on adherence in pediatric dialysis However, there was evidence of a positive association between physician access satisfaction and adherence among a sample of young adults with ESKD [35] These factors are thought to be less directly related to adherence, but still having an indirect influence on patient behavior There is some evidence of an association between shared decision-making practices and greater adherence across different chronic medical conditions [44] Additionally, a study of children with asthma found that families who were asked to provide input regarding the treatment regimen had higher adherence to prescribed medications month later [77] Community Factors There were not any studies identified that assessed the impact of community-level variables on treatment adherence in pediatric dialysis However, social support is thought to be a potentially modifiable correlate of adherence In a 2004 meta-analysis by DiMatteo, practical social support emerged as a strong predictor of adherence, noting that the risk of being nonadherent was nearly double for patients without practical social support relative to those who had the resource Additionally, in a large empirical study examining adults with ESKD, perceived social support had a positive relationship with treatment adherence [90] 673 he Impact of Treatment Adherence T on Health and Other Outcomes It is well documented that not following treatment recommendations can result in greater morbidity and mortality for children diagnosed with an advanced- or end-stage disease For example, failing to follow fluid restrictions while on HD can result in volume overload which has cascading effects of hypertension and cardiac problems [89] However, there is a lack of research investigating the impact of poor adherence on health outcomes, such as with the example above, in pediatric dialysis patients In a sample of adults on continuous ambulatory PD, poor adherence to the exchange procedure (e.g., not flushing the tubing system, failing to wash hands) was associated with a greater number of peritonitis episodes [56] Additionally, a study evaluating self- reported adherence to growth hormone in a large sample of children with CKD found that there was an association between nonadherence and poorer growth velocity [1] There is a larger evidence base for the impact of nonadherence once a child has received a kidney transplant, demonstrating a higher risk of rejection episodes and graft loss [15] Another consequence of poor adherence is how it affects decision-making for physicians For example, if a provider notices that a child has elevated blood pressure despite prescribing an antihypertensive medication, they may increase the dose or add a second medication in an attempt to get adequate control This places children at risk for side effects (if they start taking all of the medication) or other health problems associated with a higher dose While this has not been studied in dialysis, nonadherence has resulted in unnecessary medication changes in children with epilepsy [58, 59] Situations like this can also result in unnecessary expenditures Treatment for nonadherence and related complications is extremely costly as shown in research with other chronic illness populations In fact, it is estimated that up to $300 billion is spent per year to treat problems related to poor adherence [19, 20] To our knowledge, there have not been any studies evaluating the financial cost of nonadherence in pediatric dialysis 674 Interventions to Promote Adherence K L Rich et al interventions when the objective is to improve a patient’s adherence The last edition of this text noted a dearth of interBehavioral strategies include organizational vention studies to improve adherence among dial- and self-management techniques, including ysis patients, despite the need for such reminders from parents or caregivers, placing interventions [62] Very little has been published medication in a convenient location, and use of a since that time, even though pediatric patients on pill box [43] In addition, reminders delivered by dialysis report many barriers to adherence [75], smartphones or other electronic devices are comand nonadherence is associated with poorer health monly used Behavioral strategies also include outcomes [1] as noted above Hommel et al [40] parental monitoring or checking, followed by provided a summary of the research on adherence either positive reinforcement of adherence or coninterventions in pediatric psychology broadly and sequences for nonadherence, with studies demonrefer readers to a number of meta-analyses of the strating that parental monitoring is associated with effectiveness of adherence interventions [17, 33, better adherence [24, 43] Pill-swallowing difficul63] In addition, Rapoff [69] provides a compre- ties are not uncommon and can be addressed with hensive review and how-to manual with regard to behavioral strategies as well [6, 10] implementation of adherence interventions Interventions may focus more broadly on the There are many opportunities to address gaps family In a sample of 45 kidney transplant patients, in adherence for children receiving dialysis In family efficacy and flexibility were associated with addition to dialysis itself, dialysis patients take better adherence; thus, the authors suggest familymedications, often have fluid and dietary restric- based interventions might be beneficial to reduce tions, require routine injections, and may have barriers to and promote adherence [34] In a smaller other prescribed treatments depending on their sample of 13 transplant recipients, increased parent underlying conditions (e.g., schedule of self- stress, dysfunctional parent-child interactions, and catheterization) Commonly reported barriers to child behavior problems were associated with nonadherence include high pill number burden, aver- adherence, again suggesting that family-based sive taste of medications, difficulty remembering interventions may promote adherence [32] A metathe medication schedule, treatment fatigue, and analysis of adherence outcomes in pediatric solid concern for side effects [75] Intervention strate- organ transplant more broadly concluded that gies include educational strategies, behavioral greater parental distress, child behavior problems, strategies, and family-based and multicomponent and poor family cohesion correlated with poorer interventions adherence, lending additional support to the suggesEducational strategies provide knowledge tion that family-based interventions have the potenwith the assumption that increased understanding tial to improve adherence [18] will facilitate adherence, and certainly patients While intervention studies with dialysis and parents must understand the treatment regi- patients specifically are rare, studies that focus on men in order to implement it It is important to chronic health conditions with many similarities consider the patient and family’s health literacy to ESKD (e.g., high treatment burden, chronicity when providing education Strategies such as the of disease, adherence linked to health outcomes) teach-back method, which asks the family to may provide helpful information One study that “teach back” the information to the provider, can included dialysis patients was a feasibility study be used to confirm the family’s understanding of of Dialectical Behavior Therapy (DBT) to the information conveyed [4] Educational strate- improve adherence among adolescents with CKD gies may also focus on information to assist [37] Four of the seven participants were receivpatients with managing or ameliorating side ing dialysis Results of this small pilot study effects of treatments, which in turn may promote showed promising results for improved adheradherence Education is believed to be necessary, ence post-treatment suggesting that DBT could but not sufficient, to sustain or improve adher- be a helpful treatment avenue for this population ence [69] and thus is typically paired with other Studies examining the effect of family systems- 35 Psychosocial Adjustment and Adherence to Prescribed Medical Care of Children and Adolescents… based interventions, tailored to pediatric conditions such as diabetes and asthma, have demonstrated improved adherence, reduced family conflict, and improved communication [23, 94] Foster et al [28] described a multicomponent intervention for kidney transplant patients that resulted in improved adherence for those in the intervention arm compared to patients in the control group This intervention used reminder strategies; electronic monitoring; review of adherence data at 3-month intervals, with coaching; and action-focused problem-solving Due to the increasing accessibility of mobile devices, there has been a focus on using technology to promote adherence Wu and Hommel [93] provide an overview of how technology can be used to promote adherence for pediatric populations, which would apply to dialysis patients Some studies have shown improved adherence with text messaging reminders; however, those improvements are not typically sustained once the reminders are removed Additionally, electronic monitors applied to pill bottles or injectable drugs can be used to provide feedback on adherence to help families identify patterns of missing doses Table 35.2 provides an overview of adherence interventions Table 35.2 Adherence interventions Educational Organizational Behavioral Education about health condition(s) Education about treatment regimen Education about managing side effects Use of pill box Designated location for medications Setting an alarm or text message reminders Use of calendar to track appointments and tasks Daily logs of adherence, barriers, and facilitators of adherence Establishing associations between routine tasks (e.g., brushing teeth) and healthcare tasks Positive reinforcement of adherence behaviors or behaviors aimed at improving adherence Parental monitoring of adherence Teaching and use of problem-solving strategies to overcome barriers to adherence Modified from Pai and Ingerski [62] 675 ummary and Directions for Future S Research Children who undergo dialysis and their families are at risk for emotional, behavioral, and social problems, though some may have protective factors that buffer against these challenges (e.g., younger age, strong family support network) Unfortunately, adjustment difficulties can make the already challenging dialysis regimen (e.g., treatment times, medication, fluid and dietary restrictions) even more difficult, sometimes resulting in less than perfect adherence It is well documented among adults with ESKD that poor adherence to medication, site care, and other lifestyle factors can contribute to morbidity and mortality; however, there are fewer studies targeting children Evidence-based behavioral interventions to overcome barriers and ultimately improve adherence exist and could prove beneficial for this patient population Within the past 5 years, there has been limited published research to advance our knowledge of the psychological impact of dialysis on children and families It is possible that research is challenging in this population due to the relatively low number of patients at a single center While information from adult studies can be helpful to inform hypotheses, children should be considered unique from adults given developmental factors, influence of parental involvement, and so on The field would likely benefit from more collaboration across dialysis centers to increase the pool of research participants Additionally, longitudinal research has the benefit of following children across the course of dialysis to determine how adjustment can change with time, medical complications, etc Relative to kidney transplant recipients, there are few studies examining the impact of nonadherence on health outcomes when patients are at the dialysis stage of treatment Further, there is a lack of published studies evaluating adherence promotion interventions designed for pediatric dialysis patients, suggesting that the field would benefit from studying if existing evidence-based treatments are just as useful in this population Another interesting direction for research is to identify how the provision of behavioral inter- K L Rich et al 676 vention can result in a financial cost offset of treatment required for nonadherence-related medical complications Additionally, use of emerging technology may help with more accurate monitoring and promotion of the health behaviors expected while a patient receives dialysis For example, smart water bottles are now widely available and can be used to track a patient’s adherence to fluid restrictions and be used as an intervention to help patients self- monitor their water consumption I mplications for Clinical Practice and Psychosocial Care It is evident that children receiving dialysis are at risk for emotional and behavioral adjustment issues Ideally, all children receiving chronic dialysis would receive comprehensive care that addresses their medical and psychosocial needs This is particularly important as the psychological status can impact the child’s overall health, as well as their ability to engage with the recommended regimen to manage their symptoms and prevent serious complications Further, improving adherence behaviors in pediatric dialysis patients is critical as poor adherence could result in deferral or denial for kidney transplantation Mental health practitioners and behavioral specialists have the necessary background to assess and treat emotional problems, support behavior change related to adherence, and provide general support for family members who experience significant life disruption when their child’s disease is advanced enough to require dialysis Children receiving HD, in particular, are considered a captive audience given the amount of time spent physically in clinic or hospital There is also a push for dissemination and implementation of 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Age-specific risk of renal graft loss from late acute rejection or non-compliance in the adolescent and young adult period Nephrology 2018;23:585–91 ... overcome barriers and ultimately improve adherence exist and could prove beneficial for this patient population Within the past 5 years, there has been limited published research to advance our knowledge... seven participants were receivpatients with managing or ameliorating side ing dialysis Results of this small pilot study effects of treatments, which in turn may promote showed promising results... that DBT could but not sufficient, to sustain or improve adher- be a helpful treatment avenue for this population ence [69] and thus is typically paired with other Studies examining the effect of