Pediatric urology patient transition to adulthood: Brief report on the barriers and shortcomings in a resource poor state

Abstract

Introduction and Objectives

To evaluate the readiness of pediatric spina bifida (SB) patients to transition from pediatric to adult urologic care. Since 1975 the survival rate of SB has increased from less than 50 % to 85 %. Adult SB patients have increased urologic needs due to their increased risk of complications including: 7–11 times risk of renal failure, 2 times risk of bladder cancer, and 46 times risk likely of UTIs. These SB complications resulted in 37,000 hospitalization from 2004–2005 with one third of those being deemed preventable. Research has shown that adult SB patients who have successfully transitioned to adult care utilize less care 5.33 annual ambulatory visits compared to 7.25 in the non-transitioned counterparts. Our goal is to evaluate barriers, concerns, and comfort in skills deemed necessary for an SB patient’s successful transition to adult care in a resource poor state.

Material and Methods

All SB patients between the ages of 12–18 who participate in the multidisciplinary clinic and are seen by urology at UNM were eligible and offered to complete a questionnaire prior to their clinic visit. The questionnaire addressed awareness, fears and desire to learn about transitioning.

Results

Of the SB patients that were eligible for the study 10 have filled out the survey. The average age is 17.7. While 70 % know the meaning of transition, only 40 % have thought about the process. 70 % of patients believe the best age to transition is 19–21. The most prominent fears about transition included leaving current urologist (60 %), increasing responsibility for their own care (50 %), and the new urologist not knowing their past medical history (50 %) (Fig 1). Questions evaluating preferred method transition education 60 % preferred talking with the pediatric urologist, and marked they would like to meet with the pediatric urologist and adult urologist simultaneously.

1. Introduction

Due to advances in medical care, individuals with spina bifida (SB) are now requiring care through adulthood ¹. Adult patients with chronic urologic conditions from childhood are at greater risk for complications including urinary tract infections (UTI), renal failure, and malignancy ². The greater life expectancy has brought forth new challenges caring for these patients, specifically the transition to adult care. Pediatric patients that fail to transition to adult care have been shown to utilize more ambulatory care visits, emergency department visits, and inpatient admissions ³. Specifically, SB complications resulted in an annual hospital cost of over 350 million dollars with a third of those admissions being considered preventable ⁴. The transition process is paramount in preventing and healthcare maintenance for this patient population.

We present a unique situation for these patients as our institution is the only one in the state with any pediatric urologists. Many patients are required to travel long distances, have limited social resources, and occasionally lack basic necessities. At our institution, pediatric spina bifida patients participate in a multidisciplinary clinic where their needs are met. In this paper, we aim to assess awareness and readiness for the transition process in a resource poor state.

2. Methods

After institutional review board approval, patients who attended the spina bifida multidisciplinary clinic were invited to complete a 21 question multiple choice survey (appendix 1) with room for additional comments. The surveys were filled out anonymously with no patient identifying data recorded. Inclusion criteria included all patients between the ages of 12 and 21 years old and followed by the pediatric urology service. The questions evaluated a knowledge of the transition concept, need for long term care, concerns about transition, future sexual concerns, and preference on how transition is accomplished.

3. Results

A total of 30 surveys were completed from 2020 to 2022. Participation for the study was > 90 %. The average age of the participants was 16.9 years. Nineteen of the participants primarily spoke English in the home (63.3 %), 3 spoke Spanish (10 %), and 1 Navajo (3.3 %). Seven patients chose not to answer (23.3 %). All patients that chose to answer had electricity and running water in their homes, 7 chose not to answer this item.

The disease severity and patient’s healthcare self-advocacy as self reported by the survey is as follows. 21 (70 %) of patients required self-catheterization. Of those patients 15 (71.4 %) could complete this task independently, 4 (19 %) required some help from a caregiver, 1 (3 %) had another person complete the task for them, and 1 (3 %) patient chose not to answer. Interventions and complications included 20 (66.6 %) patients that had undergone either an orthopedic or neurologic surgery, and 1 patient had experienced a bladder and or kidney stone removal. The majority of patients, 21 (70 %) had experienced a urinary tract infection during their lifetime. When asked “how much do you talk to your urologist about your health during appointments,” 11 (36.6 %) stated a lot, 18 (69 %) stated somewhat, and 1 (3 %) patient chose not to answer. Responses concerning responsibility for one’s own healthcare (remembering to take meds and times of appointments) 10 (33.3 %) responders felt they took a lot of responsibility in their own healthcare. The majority of patients (63.3 %) felt that they only took some responsibility for their own healthcare, and only 1 (3 %) patient stated none at all.

Twenty-one patients understood that long term urologic care was necessary (70 %), 2 patients chose not to answer this question (6.6 %). Knowledge of the transition process was low at 17 patients (56.6 %). Corresponding to the low understanding of adult transition many patients had not given transitioning much thought. Seventeen patients (56.6 %) had not thought about transition at all, 13 (43.3 %) had thought about transition somewhat, and no patients indicated they had thought about transition “a lot.” None of the patients that were given surveys knew who their adult urologist would be.

Questions focused on concerns and preferences regarding the transition process demonstrated that the preferential age to transition was between 19–21 years old (76.6 %), 16–18 years old (10 %), and 22 years and older (10 %). One patient stated that they never wanted to transition. Patient fears about moving to adult care included: 14 leaving behind their current urologist (46.6 %), 14 having to work with a new urologist (46.6 %), 9 concerned the new urologist not knowing full past medical history (30 %), and 8 being more responsible for their own care (26.6 %). [Fig. 1].

Fig. 1.

Preferred ways to learn about transition from patient perspective.

Participants were asked how they would like to learn about the transition process and the majority (17) preferred to speak with their current pediatric urologist (56.6 %), second was meeting with the adult and pediatric urologist at the same time (13 patients, 43 %), and fewer participants chose reading a pamphlet (8 patients, 26.6 %) or video/virtual explanation (7 patients, 23.3 %).

Patient comfort discussing adult topics with their urologist such as sexuality was varied. Thirty percent (9) of participants stated they were very comfortable discussing sexuality, 43 % (13) were somewhat comfortable, and 20 % (6) were not comfortable discussing these topics.

4. Discussion

Transition to adult care has been a topic of concern for some time. While the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians provide guidance on transition from adolescent to adult care for non-chronic condition patients there was still a lack of understanding, coordination, and recommendations of a transition process for patient that do suffer from chronic conditions.[5], [6] Chronic urologic diseases are unique as the SB population is heterogenous and complications are not uniform so a standardization of transition process that could cover variations of the disease would be daunting. Other specialties have produced guidelines for congenital conditions, specifically cardiology ⁷. . This lack of guidance for transition is burdensome for all SB patients but especially for the resource poor areas where complications and morbidity cannot be easily addressed in the acute setting.

Early introduction and education may improve readiness for transition to adult care. Our study demonstrates that we are lacking in the above mentioned aspects of transition. A little more than half of the patient’s knew what transition was (56 %) and none of the patient’s had thought about transition demonstrates the lack of early introduction and emphasis on importance of the process. The majority of patients (69 %) only somewhat participated in their healthcare appointments. As this was de-identified, we cannot confirm whether or not it was mentioned in a visit, however given the results, it highlights our need to include the patients more in the process.

We compared this institution to another hospital system (Stephany et al.) who, by comparison, is a well-funded institution with five times the operating expenses. [5], [8], [9] It is also 1 of 4 academic medical centers in the state. Despite our lack of relative resources compared to other institutions, the topic of transition has been introduced similarly. However, the majority (73.3 %) of SB patients there felt that they took “a lot “of responsibility on their own healthcare, whereas our patients only 36.6 % felt similar. Independent healthcare skills were similar, 86 % of their patients who required self-catheterization could do so independently whereas 71.4 % could catheterize independently at our institution. Causes for this could be that our study included patients as young as 12 where the comparison study included ages 14 and above. The transition clinic may also have more of an emphasis on education and understanding of the disease leading to more patient involvement and proficiency in healthcare skills.

Understanding transition and thoughts about future varied amongst the patients as well. 56 % of patients understood the meaning of transition and only 70 % knew they would need lifelong urologic care. Comparison of fears between our institution and others demonstrated that there was a similar fear of leaving behind the current urologist, 47 % and 54.5 % respectively, and concern about working with a new urologist, 47 % and 42.4 %. Understandably, these patients have known these providers their entire lives and any change can be intimidating. Interestingly, our patients were less concerned about the new urologist not knowing all the past medical history compared to the other (30 % vs 57.6 %). Our institution is not a freestanding children’s hospital, which may make the transition process smoother. With the one location, the adult and pediatric urologists have the potential to communicate daily and share the same electronic medical record.

There have been other studies that have looked at readiness to transition, however these studies come from comparatively well-funded institutions.[5], [10] Compared to our current study, patient demographics, household income and level of insurance may have contributed to the differences in our results. In our institution, many patients are required to travel long distances with minimal resources which results in more missed appointments. This creates a potential bias as more motivated patients attend their clinic visits and would have completed the survey. The results may appear more favorable as motivated patients may understand their disease processes and healthcare needs better.

Studies have shown that poverty negatively affects pediatric disease prevalence and outcomes ¹¹. We are faced with unique challenges compared to other regions due to the lack of resources. Lack of funding for a dedicated transitions clinic and adult provider participation puts the onus on our pediatric providers to prepare these children for adult care. Our study shows that more focus on transition education should be pursued early in adolescence as well as disease education to improve patient empowerment. This study also demonstrates that the lack of fiscal resources does have an impact on patient readiness to transition. In the future we hope to improve on these aspects of transition readiness and increase awareness amongst our patient population.

Funding

There was no funding or outside financial supplementation for research or submission of this manuscript and research.

Conflict of interest

For this manuscript there was no financial or non financial assistance provided by a third party, and here was also no financial interest or relationship related to the subject matter in the last 3 years. The authors also have no intellectual property to disclose.

Ethical Statement

The research submitted by Victor Showalter, Angela Salazar, Jason Wilson, and Jessica Ming has been done in accordance and compliance with the relevant laws and institutional guidelines. The IRB was obtained through UNM (Ref: 20–501: Spina Bifida Readiness to Transition to Adult Care: Date 11/4/2020). All subjects in this study were had informed consent obtained prior to participation in the study and data was daintified to protect the confidentiality of each participant. The consent is attached as a supplement for the manuscript submission.

There were no competing interests that influenced the research and submission of this manuscript. The authors have no financial interests to disclose.

No Artificial intelligence was used in the creation or data collection for production of this manuscript.

This information has not been published previously, it has been presented as an abstract at 2 conferences.

Declaration of Competing Interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Appendix A. Supplementary material

Supplementary material

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Supplementary material

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Data Availability

Data will be made available on request.