Learning from the past: How lessons from Hinman syndrome can inform the psychological management of lower urinary tract dysfunction.

INTRODUCTION: Pediatric patients with lower urinary tract dysfunction (LUTD) experience a variety of medical and psychosocial concerns that can negatively impact their clinical management and quality of life. When initially described by Drs Hinman and Baumann, patients with a form of severe LUTD, later dubbed Hinman syndrome, were characterized as having a "general attitude of being failures." While this mention was noteworthy as it incorporated an understanding of the interplay between psychological factors and urologic conditions, there have been delays in implementing psychological intervention as a standard of care in patients with LUTD broadly, and perhaps too keen of a focus on youth diagnosed with Hinman syndrome specifically. METHODS: A non-systematic reviewed of LUTD related to psychological management was performed. Clinical recommendations were developed by a multicenter and multidisciplinary team of care providers with topic expertise. OBJECTIVE: The aim of this paper is to propose a systems thinking paradigm for how to involve psychology, or psychological principles, across the spectrum of patients with LUTD with the hope of improving attention to specific aspects of care that may improve clinical management. DISCUSSION: Children across the spectrum of LUTD are likely to benefit from psychological interventions and would benefit from such involvement early on to mitigate the impact of psychosocial concerns on medical outcomes. Pediatric psychologists are well-suited to identify and provide individualized care to patients in greatest need of intervention, such as through pre-procedural preparedness, addressing non-adherence, and with the use of evidence-based, targeted mental health interventions. Psychologists are also apt at implementing interventions while taking into consideration the severity of LUTD, in the context of the patient's psychological, developmental, cultural, familial, and social determinants of health considerations. Youth with severe forms of LUTD, such as Hinman syndrome, likely exemplify the challenges of LUTD that benefit from multidisciplinary intervention. CONCLUSION: Medical and psychological collaboration are key to ensuring symptom mitigation and emotional support for patients across the entire spectrum of LUTD.

Ensuring our exstrophy-epispadias complex patients and families thrive.

Individuals with bladder exstrophy-epispadias complex (EEC) need long-term integrated medical/surgical and psychosocial care. These individuals are at risk for medical and surgical complications and experience social and psychological obstacles related to their genitourinary anomaly. This care needs to be accessible, comprehensive, and coordinated. Multiple surgical interventions, reoccurring hospitalizations, urinary and fecal incontinence, extensive treatment regimens for continent diversions, genital differences, and sexual health implications affect the quality of life for the EEC patient. Interventions must include psychosocial support, medical literacy initiatives, behavioral health services, school and educational consultation, peer-to-peer opportunities, referrals to disease-specific camps, mitigation of adverse childhood events (ACEs), formal transition of care to adult providers, family and teen advisory opportunities, and clinical care coordination. The priority of long-term kidney health will necessitate strong collaboration among urology and nephrology teams. Given the rarity of these conditions, multi-center and global efforts are paramount in the trajectory of improving care for the EEC population. To achieve the highest standards of care and ensure that individuals with EEC can thrive in their environment, multidisciplinary and integrated medical/surgical and psychosocial services are imperative.

Preventing Pediatric Medical Traumatic Stress in a Pediatric Urology Outpatient Setting: Application of the Pediatric Psychosocial Preventative Health Model (PPPHM).

OBJECTIVE: The objectives of this topical review are to (1) increase understanding of pediatric medical traumatic stress (PMTS) in pediatric urology populations through literature review, (2) identify a theoretical model to guide prevention of PMTS in this population, and (3) provide clinical care recommendations based on the model identified. Authors introduce a new term "uropsychology" to describe psychological practice that specializes in the treatment of urology patients. METHODS: Pediatric uropsychologists from 5 pediatric medical care centers gathered to discuss their experience with treating PMTS in their settings and to review existing literature related to PMTS in pediatric urology, PMTS in other populations, and established models for prevention. Authors provide recommendations based on literature review for preventing PMTS in a pediatric urology population. RESULTS: Gaps in the evidence base for preventing PMTS in this population are identified. Authors provide a series of clinical care recommendations, utilizing clinical experience, and the Pediatric Psychosocial Preventative Health Model (PPPHM) as a framework. CONCLUSIONS: While there is limited research on PMTS in pediatric urology populations, urologic interventions can be perceived as invasive, painful, distressing, and traumatic. Application of the PPPHM can guide prevention and intervention efforts. Future research is needed to characterize PMTS in this population, evaluate the efficacy of trauma-informed prevention and intervention practices, and develop screening measures that accurately identify at-risk patients. Authors recommend intradisciplinary collaboration among uropsychologists, urology specialists, and patients and families to create formal standards of care, avenues for other future research, and equitable access to uropsychology care.

Characterizing psychosocial services in a pediatric urology practice.

INTRODUCTION: Psychosocial needs, which encompass behavioral health and social determinants of health (SDOH), are important mediators of the patient experience and health outcomes. However, many practices have limited experience with systematically assessing the non-billable psychosocial services provided to patients and families. OBJECTIVE: To characterize the non-billable activities of three psychosocial providers in a pediatric urology practice at a freestanding children's hospital. STUDY DESIGN: Following Institutional Review Board approval, an adapted version of the Care Coordination Measurement Tool (CCMT) was used to collect data prospectively on non-billable activities performed by a psychologist, social worker (SW), and certified child life specialist (CCLS) in a pediatric urology department. Variables included activity type, time spent per activity, and outcomes affected. Demographic data included age, sex, race, state, zip code, insurance type, and language. RESULTS: From April to October 2022, 3096 activities were performed in support of psychosocial needs over 947 encounters for 527 patients. The median patient age was 9.2 years (IQR 4.8-12.4); 48.4 % were male. The psychosocial providers most commonly identified care coordination needs related to delivery of urologic care (73.4 %), mental/behavioral/developmental health (29.1 %), and referral and appointment management (19.9 %). The largest proportion of time was spent on providing direct psychosocial support (45.9 %), consisting of psychosocial assessments, education, and other behavioral health interventions. A large proportion of time was also spent on care coordination activities, namely logistics and navigation support (35.9 %). Relative time allocation across activities varied by provider type (p < 0.001); care coordination constituted 64.2 % of non-billable activities for the psychologist, 57.8 % for the SW, and 12.3 % for the CCLS. Activities were associated with treatment plan modification in 37.7 % (n = 357), outpatient coordination in 22.5 % (n = 213), and treatment plan adherence in 19.0 % (n = 180) of encounters. DISCUSSION: This study enhances our understanding of psychosocial needs of patients in a pediatric urology practice by assessing non-billable psychosocial services not otherwise captured in the clinical workflow. In addition to direct psychosocial support, care coordination activities constitute a large proportion of such services. These data provide valuable insight into the range of activities necessary for the provision of specialty pediatric medical care. CONCLUSION: Psychosocial providers in a pediatric urology practice perform many non-billable care coordination and psychosocial support activities. Characterizing these activities is important for beginning to understand patients' psychosocial needs and informing resource deployment.

The impact of clean intermittent catheterization on students and families in the school environment.

INTRODUCTION: Clean intermittent catheterization (CIC) is often used for bladder emptying in children with lower urinary tract dysfunction. Until recently, the emphasis in assessing the effects of CIC has been on preserving kidney function, reducing urinary tract infection, and achieving urinary continence. Few studies have investigated the impact of CIC on students and families in a school setting. This study sought to examine what students and caregivers experienced when CIC was required during the school day and how schools adjusted to a student needing to perform it. MATERIALS AND METHODS: A phenomenological approach utilizing semistructured interviews was performed to understand the impact of CIC on students. Purposeful sampling identified eligible families. A guide was developed from expert opinion validated by a pilot sample with feedback collated into a family/provider codesigned questionnaire. Interviews emphasized the impact and challenges students faced at school. Transcripts were coded using Dedoose software with emerging themes identified and a code book was created for closed coding that led to thematic analysis. RESULTS: A total of 40 families (52 caregivers and children > 12 years) were interviewed. Emergent themes included: Caregivers and students felt (1) school personnel were not always aware of nor prepared regarding the implications of CIC; (2) school bathrooms were often less than ideal (e.g., location, size, cleanliness, privacy, and availability); and (3) student participation in extracurricular activities was challenging. CONCLUSIONS: This study identifies potential areas of intervention in meeting the needs of students who require CIC and the importance of having collaborative efforts of caregivers, health care providers, and school personnel in addressing and meeting CIC needs. Care coordination that involves consistent communication and careful planning between health care teams, school personnel, students, and caregivers can optimize a student's educational experience.

Facilitators and challenges to transitioning to self-catheterization: Patient and caregiver perspectives.

INTRODUCTION: Clean intermittent catheterization (CIC) is a well-established method of managing lower urinary tract dysfunction. Depending on the age at introduction, caregivers might perform CIC initially but then transition responsibility to their children. Little is known about how to support families during this transition. Our aim is to learn the facilitators and challenges experienced when supporting the transition from caregiver-led CIC to patient self-CIC. MATERIALS AND METHODS: A phenomenological approach was used to gather information from caregivers and children >12 years through semistructured interviews. Thematic analysis was utilized to generate themes around experience with the transition from caregiver-led CIC to patient self-CIC. RESULTS: Of the 40 families interviewed, 25 families underwent successful transition to patient self-CIC. Analysis of excerpts identified a three-step process, including (1) desiring to learn self-CIC, (2) practical learning of CIC techniques, and (3) mastering of techniques leading to emotional and physical independence. Many families experienced challenges in transitioning to self-CIC, including patient or caregiver reluctance, improper equipment, past negative experiences, lack of knowledge about urinary tract anatomy and function, abnormal anatomy, and/or moderate to severe intellectual disability. DISCUSSION: Authors reviewed interventions to address challenges and provide clinical care recommendations to enhance success during the transition to patient self-CIC. CONCLUSION: No prior studies have identified this stepwise process that occurs in the transition from caregiver-led CIC to patient self-CIC. Healthcare providers and school officials (where indicated) can support families during this transition, with attention to facilitators and challenges identified in this study.

Comorbidity of Obsessive-Compulsive Symptomatology and Bowel and Bladder Dysfunction in a Tertiary Children's Hospital: A Case Series.

OBJECTIVE: To improve understanding of co-occurring obsessive-compulsive disorder (OCD) and bowel and bladder dysfunction (BBD) in an outpatient pediatric urology clinic setting. To provide a series of clinical care recommendations to enhance the identification and integrated medical and behavioral health treatment of these disorders. METHODS: Authors participated in a series of discussions to define the patient population and specific aims for the study. Efforts were made to select index patients of diverse background despite limited sample availability. Three patients were ultimately selected for the study. RESULTS: The case studies highlight the connection between urinary issues and underlying OCD symptoms. All patients were initially seen for medical treatment of urological symptoms, then referred for psychological evaluation, and were diagnosed with and received treatment for OCD. Similarities among the cases, including experience of phantom urinary incontinence, stressors present that contributed to symptoms, and obsessive fears of incontinence that led to compulsive behavior, were discussed. Differences between the cases, including patient age, sex, and compulsive behavior demonstrated (ie, urinary frequency, excessive wiping) were also reviewed. CONCLUSION: Access to a behavioral health provider can enhance the identification of comorbid psychological disorders and can reduce duration of symptoms through appropriate psychological treatment. Authors provide recommendations for screening measures and reinforce importance of including basic education on psychiatric diagnoses and impact on urological symptoms in urology and pediatric fellowship training programs. Future research exploring prevalence of comorbid psychiatric conditions and efficacy of treatment interventions in a pediatric urology population would be beneficial.

The art of introducing clean intermittent catheterization: How families respond and adapt: A qualitative study.

INTRODUCTION: Since its inception >50 years ago, clean intermittent catheterization (CIC) has become ubiquitous in managing lower urinary tract dysfunction in children. Emphasis has been on its impact on daily life, but little on its implementation and adjustment in families. The aim of the current study was to discover how families learned to implement and manage their child's CIC needs by interviewing caregivers, adolescents, and young adults about their experiences. Interviews were designed to uncover facilitators and barriers to beginning CIC to initiate potential improvements in a multidisciplinary approach. METHODS: A semi-structured interview guide was developed and piloted initially to 12 families for validation. Between August 2018 and October 2019, 40 families (52 interviews of caregivers and patients >12 years) were then interviewed with open-ended questions interspersed with more specific ones to generate discussion. Transcripts were coded using Dedoose software to create a base list with emergent codes. Inductive and deductive methods were employed to generate themes. Consensus was reached during successive team meetings. RESULTS: Five major and several subthemes emerged regarding implementation of CIC by caregivers and patients learning CIC for the first time. THEME 1: Parental reaction to CIC: Caregivers described benefits of an adjustment period on learning their child's need for CIC. Prenatal information to caregivers of spina bifida children gave them time to mentally process the need for CIC. THEME 2: Ease of learning CIC: impact of age and gender: caregivers identified advantages of initiating CIC in infancy. Caregivers speculated CIC was physically easier in boys than girls due to meatus location. Developmentally ready children expressed a desire for independence and privacy as they learned to initiate CIC. THEME 3: The impact of additional caregiver support in learning and performing CIC: presence of multiple caregivers optimized learning and implementation of CIC. Having secondary caregivers available provided peace of mind and more flexibility in maintaining reliable CIC care. Patients learning CIC found it helpful to have a parent present at the teaching session. Occasionally, female caregivers reported feelings of anger and frustration when male caregivers were reluctant to be involved in catheterization, irrespective of their child's gender. THEME 4: Satisfaction with healthcare team's approach: The healthcare team's responsiveness to their learning needs affected how they mastered CIC. The healthcare team's teaching and reassurance helped build caregiver confidence. Developmentally appropriate children were able to learn self-catheterization when supported by the healthcare team. Patients learning self-CIC articulated having a supportive healthcare team was helpful with implementation. THEME 5: Effect of CIC on employment status relative to job changes, insurance, and daycare: implementing and performing CIC presented a spectrum of issues related to employment. Educating employers regarding CIC facilitated a caregiver's ability to both remain at work and administer to their child. Caregivers underscored the importance of adequate insurance when considering employment choices. Concerns about daycare availability affected caregivers' work schedules. CONCLUSIONS: It is anticipated this information will aid healthcare personnel to more effectively teach and initiate CIC in families, and in individuals learning for the first time. The findings should serve as the basis for conducting future patient satisfaction studies, which would determine the effectiveness and reproducibility of these approaches.

Interdisciplinary Collaboration in a Pediatric Urology Outpatient Clinic at a Tertiary Children's Hospital: A Case Series.

OBJECTIVE: To increase awareness and understanding of how psychology, social work, and child life specialties can integrate into interdisciplinary pediatric urology care. To advocate for increased access to psychology, social work, and child life specialty care in other pediatric urology care centers. METHODS: Authors participated in a series of discussion groups to develop the aim and goals for this study and identify patients that would best exemplify the interdisciplinary nature of care provided. Initially, fifteen patients were selected; further focused discussion groups supported the selection of 6 patients that are described in this study. RESULTS: Authors present a series of 6 case studies aimed to illustrate the interdisciplinary support available to pediatric urology patients in 1 tertiary care center. Cases review a range of presenting issues, including a patient learning clean intermittent catheterization (CIC), a patient resistant to surgical intervention, patients with bowel and bladder dysfunction, a patient undergoing voiding cystourethrogram (VCUG), and a patient with urinary frequency, all of whom presented with a range of psychosocial needs that impacted their urological treatment. CONCLUSION: Access to a psychosocial support staff can improve adherence to medical treatment by reducing barriers to care and promoting behavioral change, support patients in coping and reducing post-traumatic stress following surgery and invasive procedures, improve communication between patients, families, and medical staff, and treat psychological issues that contribute to urinary symptoms. Additional literature exploring how these interventions reduce costs associated with medical intervention, hospitalizations, outpatient visits, emergency visits, and sedation for procedures would be beneficial.

Characterization Study of Patients Presenting to an Acute Care Pediatric Hospital Identified With Avoidant/Restrictive Food Intake Disorder.

OBJECTIVES: Nearly one-quarter of individuals diagnosed with avoidant/restrictive food intake disorder (ARFID) require medical admission. There have been efforts to characterize ARFID in outpatient and intensive day treatment settings; however, authors of few studies have examined this presentation in the inpatient pediatric hospital setting. In this study, we aim to further characterize patients presenting to the hospital with concerns for ARFID. METHODS: This study involved a retrospective chart review of medically admitted patients with ARFID seen by the psychiatry consultation service at a tertiary care New England pediatric hospital from 2015 to 2016. RESULTS: The typical hospitalized patient with ARFID was a 12.9-year-old, white girl with previous history of outpatient mental health treatment, anxiety disorder, and gastrointestinal-related diagnoses admitted to adolescent medicine or pediatric hospitalist services with >1 year of feeding difficulties often triggered by a precipitating event. Despite >80% of subjects receiving evaluations as outpatients for feeding-related concerns, including 60.5% seeing their primary care provider, <20% were diagnosed with ARFID before hospitalization. The average length of admission was 8 days. All imaging, scopes, and swallow studies conducted during the admission were nonrevealing. Almost half of patients required enteral tube feeds, and 63.2% required psychiatric medications during the admission. Only 31.6% of patients had the ARFID diagnosis documented in their discharge notes. CONCLUSIONS: Consistent identification of ARFID remains variable, underrecognized by community providers, and underdocumented by hospital providers. Accurate recognition of ARFID and additional study into contributory factors and treatment approaches may help improve effective health care use and treatment outcomes.