667 effects can significantly alter or influence the physical appearance of patients, which in turn may impact their quality of life and social emotional adjustment Patients with short stature, a CKD[.]
35 Psychosocial Adjustment and Adherence to Prescribed Medical Care of Children and Adolescents… effects can significantly alter or influence the physical appearance of patients, which in turn may impact their quality of life and social- emotional adjustment Patients with short stature, a CKD-related comorbidity, report lower self- esteem compared to normative population data [71] One study examining 483 children with CKD found that height gains and growth hormone use were associated with improved physical and social functioning [3] Girls with ESKD report more concerns about their physical appearance [60], and one study indicated that both low and high levels of depressive symptoms were associated with less satisfaction with physical appearance [38] Demands of treatment limit school attendance and academic achievement In a group of 136 pre-dialysis, dialysis, and transplant patients, 34.6% reported failing and repeating a grade in school, with over half reporting that this was because of medical treatment [55] The social effects of pediatric dialysis and transplant are long term Adult survivors of pediatric ESKD have lower rates of employment, fewer offspring, and lower income than the general population, as well as diminished physical and health-related quality of life [82] In a 30-year follow-up study, Tjaden et al [80, 81] found that comorbidities, return to dialysis, short stature, and fewer achieved milestones related to autonomy were associated with adverse outcomes, such as unemployment and lower educational achievement There was some evidence that this group of patients experienced some “catchup” over time in terms of living with a partner and completing higher education; however, the number who were unable to work for medical reasons also increased A recent examination of outcomes deemed most important for patients with CKD indicated that patients valued outcomes that directly affected their lifestyle; maintaining a sense of normalcy was a priority [36] Alternative dialysis modalities that present with fewer lifestyle restrictions may offer opportunities to improve social-emotional development and quality of life There is evidence that pediatric patients prefer home HD, because it offers greater flexibility and 667 freedom to live a “normal” life, versus in-center HD which requires patients to be at the hospital multiple days per week [83] Home nocturnal HD and even in-center nocturnal HD also offer flexibility and have been shown to improve school attendance and quality of life and reduce some aspects of treatment burden, such as dietary and fluid restrictions [30, 41] Parent and Family Adjustment The impact of childhood chronic illness, such as ESKD requiring dialysis, understandably extends beyond the patient to one’s caregivers and family system [47] Parents of children receiving dialysis treatment often juggle many demands, including dialysis treatment time and travel burdens, diet restrictions for their child, financial and employment strains, and fears associated with their child’s life-threatening condition, among many others In addition, some parents may be considering or undergoing living kidney donor evaluations, navigating both caregiver and patient roles themselves Across the pediatric chronic illness literature, parental mental health and stress has been shown to be associated with child psychological and physical health outcomes [16] Thus, it is critically important that parental mental health be assessed, monitored, and intervened upon via family-centered care to promote optimal outcomes for both patients and their families [49] Parent Psychological Adjustment A number of studies have examined parental psychological adjustment in families of children receiving dialysis treatment Many of these studies have been qualitative in nature (see [2] for review) In a study of 32 parents of children with ESKD (38% of sample receiving dialysis), 27% of the total sample reported clinically significant depressive symptoms, whereas 34% reported anxiety symptoms above the scale’s cutoff [26] Similar rates of depression (28%) were endorsed among a sample of 32 parents of children receiving PD treatment [86] In a more recent study by Zelikovsky and colleagues [96] (2007; 30% of sample receiving dialysis), mothers experienced 668 greater depressive symptoms than fathers, although mean scores for both groups on a standardized depression measure were in the “minimal” range Among yet another sample of parents of children receiving PD, over half of the sample endorsed clinically significant scores on a global psychological distress screening measure [51] Rates of depression, anxiety, and sleep problems have been found to be higher in parents of children undergoing PD compared to parents of kidney transplant recipients [7] Other factors found to be associated with adverse parental psychological outcomes include lower socioeconomic status, larger family size, increased social impairment of child, and lower satisfaction with dialysis care and treatment [25] Moreover, use of avoidant coping strategies and increased parenting stress associated with a child’s renal disease have also been found to significantly predict depressive symptoms in both mothers and fathers [96] Parent Stress In a qualitative interview-based study of 31 parents of children receiving three times weekly HD, the most common stressors endorsed included health system issues (e.g., long waits for lab draws, insurance challenges, frequent appointments), financial stressors (94%), growth, appearance and development of child (90%), fluid/diet restrictions, educational difficulties for child (87%), lack of social support, and anxiety about child’s critical state [13] These findings were supported by an interview study of 20 parents who discussed stressors related to the (1) hospital environment (e.g., painful procedures, disempowerment, appointment burden), (2) role of a “medicalized parent” (guilt, time-consuming, anger), and (3) disruption of family norms [84] Similarly, Tsai et al [86] found that parents of children undergoing dialysis treatment reported lower family incomes and higher unemployment rates compared to national averages As such, parents of children receiving dialysis treatment have reported greater stress than parents of children who underwent kidney transplantation, particularly in the area of “daily K L Rich et al psychosocial strains” [11, 91] Avsar et al [7] found that caregiver burden scores were 2.6 times higher in the dialysis group when compared to parents in the transplant group Moreover, mothers tend to endorse greater parenting stress than fathers [91, 96] Given the significance of assessing and understanding parental stress and burden, Parham et al [64] developed the validated parent-report 60-item Paediatric Renal Caregiver Burden Scale, which can be used with dialysis populations Family Adjustment Families of children with ESKD on HD report significantly more disruptions to family life (77%) than families of those with chronic kidney disease not yet receiving dialysis treatment (31%) Similarly, parents in the dialysis group endorsed greater marital strain (65%) than the non-dialysis group [70] Family adjustment, in turn, impacts the patient’s emotional and physical health outcomes For example, in a study of 41 parents of children receiving dialysis treatment or undergoing transplantation, higher family conflict predicted increased child externalizing symptoms and a higher number of prescription medications On the contrary, better family cohesion was associated with fewer hospitalizations [78] Across several studies, the majority of parents of children receiving dialysis also acknowledged the impact of illness on their parenting approaches For example, parents reported increased protection of or leniency toward their children on dialysis [70] Others reported restricting the activities of their healthy children to reduce the impact on their child with ESKD and regularly relying on others (e.g., grandparents) to primarily care for healthy siblings [13] Sibling Adjustment Changes in parenting practices and family functioning may also impact siblings of children undergoing dialysis In a small study of 15 siblings, 90% endorsed disruption to family routines, 80% noted feeling jealous or left out, and nearly 50% felt they could not openly share their concerns or problems with their parents [9] Thus, it is important that attention be 35 Psychosocial Adjustment and Adherence to Prescribed Medical Care of Children and Adolescents… paid to the psychosocial needs of siblings as well throughout the dialysis course Treatment of Psychosocial Problems Children and Adolescents Few researchers have formally investigated psychosocial interventions among pediatric dialysis populations However, given the incidence of emotional and behavioral concerns in children and adolescents undergoing dialysis treatment, mental health treatment may be needed Thus, screening for psychosocial problems should be conducted to inform referral and treatment The Centers for Medicare and Medicaid Services (CMS) requires that patient psychosocial screening is completed annually The type of screening measures used should be determined by mental health professionals at the dialysis center; however, considerations may include quality of life measures, as well as the freely available NIH PROMIS® screening measures 669 Parents and Caregivers As noted previously, there has been limited research specific to parent or family-based interventions among pediatric dialysis populations; thus, it is helpful to rely on the broader pediatric chronic illness literature It has been recommended that comprehensive, interdisciplinary care be provided to best support families of pediatric dialysis patients [22] The interdisciplinary care team may vary from center to center, but could include a social worker to support parents/caregivers, a psychologist to support the patient, and child life specialists to support both the patient and siblings, along with other team members Behavioral Family Systems Therapy (BFST), which focuses on improving problemsolving skills, could be utilized to reduce the significant parental stress and burden families report [95] In addition, Kazak and colleagues developed a 1-day family-based group cognitive-behavioral intervention for parents affected by childhood cancer to decrease parFor patients requiring intervention, cognitive- ent and family stress and improve family funcbehavioral therapy (CBT) remains the most tioning This intervention, which resulted in empirically supported treatment for child anxiety sustained reductions in parental anxiety and and depressive disorders [14], even among chil- post-traumatic stress disorder (PTSD; [48]), dren with chronic medical conditions For patients could be adapted to meet the psychosocial experiencing procedural distress or anxiety needs of parents of children undergoing dialyrelated to dressing changes, dialysis access, etc., sis treatment Although educational and supCBT interventions, distraction, and hypnosis have portive interventions are often offered to been shown to be effective [87] To promote suc- parents, a systematic review of three studies cessful health outcomes, some patients may also determined that there was limited high-quality require intervention specific to pill swallowing evidence to support the effectiveness of inforBehavioral approaches, including modeling, mational or support-based CKD caregiver shaping, and positive reinforcement, can be uti- interventions [85] lized to effectively teach children to swallow pills [10, 65] Important steps can be taken to amelio- Siblings Parents and caregivers may also report rate some of the negative impact of ESKD on concerns about sibling emotional and behavioral child adjustment and functioning and promote health to dialysis providers Similar psychoeduchildren’s integration of their healthcare needs cation about the benefits of cognitive-behavioral into their lives more broadly Qualitative studies therapy for childhood mental health problems have suggested that improving patients’ uptake of should be provided, along with a recommendaknowledge about their disease and its treatment, tion for parents to discuss concerns with the sibhelping them work toward a sense of normalcy, ling’s pediatrician/healthcare provider, who can and increasing autonomy and feelings of empow- provide additional screening and referrals erment may assist children and adolescents with School-based counselors can also be very helpful coping and adaptation to their disease [84] for promoting sibling coping (particularly since it 670 may cause undue burden for the family to transport the sibling to a therapy appointment), as well as child life specialists during hospitalizations dherence to Prescribed Medical A Regimens A widely recognized definition of adherence from the World Health Organization [73] describes it as “the extent to which a person’s behavior – taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed upon recommendations from a healthcare provider.” Adherence is the preferred term (versus “compliance”), as it suggests collaboration between the child, family, and provider, while the latter term feels directive and implies a power differential between the provider and patient Across chronic medical conditions that impact children and adolescents, adherence rates are around 50%, meaning that about half of this population is not receiving the recommended treatment [69] This rate is staggering, particularly since failure to follow prescribed regimens is associated with symptom persistence, faster disease progression [74], unnecessary change or escalation in treatment [58, 59], reduced quality of life [21, 29], increased healthcare costs [57], and death [61] Unfortunately, the rate of adherence among pediatric dialysis patients remains understudied, particularly when considering the evidence base among adults on dialysis and among children who have received a kidney transplant This is likely due to several factors including a relatively small pool of children receiving this treatment modality, the complex nature of the regimen (e.g., oral medication, injections, diet, fluid intake), difficulty tracking the combination of treatments being provided in the clinic and in the home setting, and assumptions that patients are following advice to treat end-stage disease Much of the data we have are from studies conducted in the late 1980s and 1990s [39, 42, 76], suggesting a lack of momentum on understanding how adherence has evolved in this group According to those studies, rates of K L Rich et al nonadherence for dialysis patients ranged between 17% and 43% A study assessing follow-through with the PD prescription identified that 45% of patients and families were not adherent to at least one treatment element (i.e., number of sessions per month, duration of each session, number of cycles, dialysate volume) Interestingly, families had the most difficulty carrying out the prescribed number of sessions per month and the recommended dialysate volume [12] Additionally, self-reported data from a sample of families of children with CKD in Guatemala revealed a medication adherence rate of 76% among HD and PD patients, which was lower than the 82% adherence rate in the transplant sample [68] This stalled research is particularly concerning as medical technologies evolve with different treatment options becoming available One recent study of adolescents and young adults with CKD (pre-dialysis) documented rates of nonadherence between 35% and 61% [66] Further, a review published in 2017 concluded that rates of adherence to dietary restrictions among adults who were dialysis- dependent were suboptimal, as adherence fell between 31% and 68% [53] While some chronic conditions can be managed solely with oral medication or following a certain diet, dialysis often requires a complex combination of prescription medication (taken either multiple times daily, with meals, every other day, weekly), lifestyle changes, and frequent visits to the clinic (multiple times per week for hemodialysis; weekly to monthly for peritoneal dialysis) Not surprisingly, these treatment expectations can interfere with a child’s normal activities, particularly in light of the time they already spend receiving dialysis in the clinic or at home As such, it may not be feasible for children and families to have strict adherence to all of these aspects of care There are many factors that may result in a patient intentionally or unintentionally missing medication or not following a low phosphorus diet Additionally, the nature of child and adolescent development makes it challenging for patients in these age groups to fully appreciate the long-term consequences of not following their medical regimen 35 Psychosocial Adjustment and Adherence to Prescribed Medical Care of Children and Adolescents… Assessment of Adherence Behaviors that occur outside of the clinic or hospital setting, such as taking medication or restricting fluid intake, can be difficult to assess Since these behaviors cannot be directly observed on every occasion that medication or fluid is to be administered, clinicians often rely on the child or family’s report or their own interpretation of how adherent they are However, factors such as relying on memory over a period of weeks to months, fear of disappointing or upsetting the medical team, and confusion about how the regimen is to be carried out can all affect what a patient reports about his or her adherence Despite this, several strategies have been developed to estimate an individual’s degree of adherence Popular methods include self-report (e.g., “How many times did you take your medication last week?”), provider estimates (e.g., “Do I think my patient is taking his/her medication?”), pharmacy refill data, monitoring blood levels (e.g., checking phosphorus levels as an indicator of adherence to dietary restrictions or administration of phosphate binders), and electronic monitoring (e.g., using a special pill bottle that tracks each opening) Since each method has advantages and disadvantages and cannot guarantee a perfect assessment, it is recommended that providers combine one or more of these methods to get the most comprehensive view of the patient’s behavior A recent study by Pruette et al [66] evaluated the additive benefit of adherence assessment tools among children with chronic kidney disease and warned of the inaccuracies of relying solely on medical provider assessment Factors Associated with Adherence In an effort to better understand adherence, past research has focused on child and family characteristics that correlate with this behavior While several theories of adherence exist, the Pediatric Self-Management Model [58, 59] presents a helpful framework for understanding various levels of influence on adherence The model identifies four categories of influence: (1) individual (e.g., gen- 671 der, cognitive ability, health beliefs), (2) family (e.g., income, parental involvement in the regimen), (3) healthcare system (e.g., availability of healthcare resources, communication between patient and provider), and (4) community (e.g., peer support, school-based accommodations) Within each category, there are factors that are modifiable (i.e., can be changed, such as knowledge about the treatment regimen) and nonmodifiable (i.e., cannot be changed, such as the child’s age) Understanding these factors is crucial as it can help identify children and families who may be at risk for adherence difficulties, as well as inform the development or use of existing interventions to promote adherence It is interesting to note that research examining influences on adherence in the pediatric dialysis population has lagged behind other chronic conditions commonly occurring in childhood One study reported barriers of pill burden, poor taste of the medication, difficulty remembering the medication schedule, and being tired of living with a chronic medical condition, with patients receiving HD endorsing more obstacles to adherence than those on PD [75] The following is a summary of existing research with children and adolescents receiving dialysis (see Fig. 35.1 for an overview) The content is supplemented with research from pediatric kidney transplantation, other common chronic medical conditions, or adult dialysis as past research of children on dialysis has not targeted each of these domains Individual Factors Across pediatric chronic illness populations, being an adolescent or young adult is a risk factor for poor adherence due to multiple biological, psychological, and relational changes that occur during this period Consistent with the broader literature, older age was associated with higher phosphorus levels in a study of HD and PD patients, suggesting that older children and teenagers were less likely to take phosphate binders with each meal [79] Additionally, adolescents and young adults are at highest risk for graft loss after kidney transplantation which is attributed to problems with medication adherence during this developmental period [27, 72, 88] In one study, nonadherence to the PD pre- 672 K L Rich et al Fig 35.1 Factors related to poor adherence in pediatric dialysis and CKD. Modifiable factors in top box and nonmodifiable factors in bottom box scription was more common among patients who were male and of Black race [12] A study of young adults (16–30 years old) receiving renal replacement therapy found that patients who identified as Black or Asian had poorer adherence [35] Though symptoms of anxiety or depression have been linked with greater adherence difficulties in other pediatric populations, a study by Simoni et al [76] failed to detect an association between mood and treatment adherence in 23 pediatric dialysis patients However, in a different study, there was a moderate correlation between depressive symptoms and nonadherence to recommendations for blood pressure management (adherence to fluid restrictions and antihypertensive medication) among a sample of 118 adults receiving chronic HD [46] Additionally, a sample of young adults receiving kidney replacement therapy (HD, PD, or transplant) identified psychological comorbidity as being a risk factor for worse adherence [35] A review of the literature did not identify any studies assessing the relationship between a child’s cognitive functioning and adherence This is both surprising and concerning given that poor kidney function is known to negatively impact executive functioning (e.g., attention, memory, organization) which are critical abilities for managing the complex dialysis regimen [31] While there were no identified studies examining how patient perspectives impact dialysis adherence in children, beliefs about the relative unimportance of phosphate binders were associated with adult patients on dialysis deliberately choosing not to take the medication [92] Family Factors Given the complexity of the dialysis regimen, family members are almost always involved in supporting the pediatric dialysis patient For very young children or children with significant developmental delays, parents or caregivers take on most of the responsibility for ensuring the patient follows his or her medical plan As the child develops, the manner in which the family supports him or her can change Generally, parental support is thought to be a protective factor, as children whose parents remain closely involved have better rates of adherence [45] Among young adults receiving renal ... adolescents, adherence rates are around 50%, meaning that about half of this population is not receiving the recommended treatment [69] This rate is staggering, particularly since failure to follow prescribed... among children who have received a kidney transplant This is likely due to several factors including a relatively small pool of children receiving this treatment modality, the complex nature of the... ent and family stress and improve family funcbehavioral therapy (CBT) remains the most tioning This intervention, which resulted in empirically supported treatment for child anxiety sustained