Commentary

Young Adulthood: Supporting Pediatric Patients’ Most Pivotal Transition

Morgan Mitcheson, Jennifer Christofferson, Sarah Nelson and Leah Reece

The young adulthood developmental period, between the ages 18-29, coincides with an abundance of developmental, psychosocial, and societal changes, including the transition from pediatric to adult healthcare, which necessitates “purposeful, planned movement of adolescents and young adults (YAs) with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems” (Oreper et al., 2022, p.1217), but clear guidance on the most appropriate ways to ensure a smooth transition for these youth remains elusive. As such, the current commentary aims to review the major shifts YAs experience throughout this transition that directly affect how they receive healthcare and highlight potential avenues for providers and researchers to support this transition. YAs have described feeling isolated in this period due to a lack of a clear plan and feeling cut off by their pediatric providers (Murray et al., 2022). These considerations in care are particularly salient for pediatric patients living with chronic pain. Roughly one out of five children will experience chronic pain; over half of whom will continue to have symptoms into adulthood, a prevalence of 11.6% nationwide (Chambers et al., 2024; Forgeron et al., 2017; Murray et al., 2022). YAs experiencing chronic pain are at an increased risk for internalizing disorders, isolation from academics and occupation through experiences such as attendance and engagement, poor physical functioning, decreased socialization, and dependence on others (Brown et al., 2021). Without proper connection to healthcare, YAs with chronic life-limiting conditions such as chronic pain are at risk of experiencing increased emergency department use by 24% (Jarvis et al., 2022). Despite high prevalence and risk, little research has been conducted on YA’s transitions within chronic pain healthcare and potential barriers to treatment adherence.

Shift in Health Management Responsibilities: From Parent to Child

Caregiving

Caregiving style and involvement in healthcare can impact how prepared a YA is to manage their healthcare. Parents/caregivers of individuals with chronic pain may experience high anxiety and fear of letting go of medical responsibilities when their YA is beginning this and may believe their YA will not be able to handle their healthcare (Forgeron et al., 2017; Peeters et al., 2014). Parents/caregivers can also experience high pain catastrophizing, the magnification of the threat of pain to their child, which can drive avoidant behaviors around experiencing pain. This feeling can lead caregivers to restrict their child’s involvement in managing their healthcare in attempts to avoid more pain symptoms (Forgeron et al., 2017; Peeters et al., 2014). Protecting the YA from potentially mismanaging their own healthcare or experiencing higher stress in the short-term negatively impacts the YA patient in the long term. YAs need to be given a framework from parents/caregivers on how to manage their health care in the eventual absence of parent/caregiver support in adolescents’ decision making and independence; skills crucial for self-efficacy, defined as “people’s beliefs about their capabilities to exercise control over their own level of functioning and over events that affect their lives” with health management (Forgeron et al., 2017, p.247). This scaffolded approach will support the YA in gradually increasing responsibility and independence in managing their health care and effectively transitioning to an adult-focused health setting. Although it is evident that parent/caregiver guidance and support are needed to support the patient to learn these skills, build confidence in their abilities, and enhance self-efficacy, further research is warranted to assess the impact and role of parenting/caregiving on healthcare decision making and independence.

Self-Efficacy

It has been found that increased self-management skills are correlated with increased self-efficacy skills. YAs have identified that a barrier to effective health care management is feeling overwhelmed with increased responsibilities such as potential changes in schooling, career, and housing (Murray et al., 2022). YAs are often expected to assume greater responsibility for occupational, educational, and social tasks. Navigating increased responsibility and independence while managing chronic pain can be particularly challenging and may cause an inability to adequately fulfill required roles/tasks (Murray et al., 2022). Importantly, executive functioning skills required for organization, planning, and management of tasks are not yet fully developed during this developmental stage. This may have implications for YAs’ self-efficacy and confidence in their own capabilities, resulting in a negative feedback loop. With the proper support of both providers and parents, YAs should be taught to prioritize their health management and learn to manage tasks related to healthcare management to increase successes that serve to enhance feelings of self-efficacy and support further development of independence.

Shift in Receiving Care: Pediatrics to Adult Medicine

Differences in Support

Pediatric providers may be ill-equipped to meet the unique needs of YAs such as addressing questions surrounding sexual functioning, family planning, and vocational counseling (Forgeron et al., 2017). The presence of these burgeoning concerns in the healthcare setting are an indication that the YA may be ready to transition from a pediatric setting to an adult clinic. Occasionally, when it is time to transition to adult providers, the patient stops seeing the pediatric provider with no referral or guidance. In a qualitative study by Murray and colleagues (2022), they identified a theme of YAs not having provider guidance on healthcare transitioning, with one 19-year-old with musculoskeletal pain and headaches stating: “So, after eighteen I was pretty much just cut off” (Murray et al., 2022, p.1365). Although and under-researched factor itself, stigma around seeing an adult provider, diagnoses, or medical finances could also be a reason to avoid seeking a provider and could be due to lack of knowledge about the services, worry about finances being “worth” the visit, and a lack of referral (Wakefield et al., 2022). Without proper education on the benefits that an adult provider can impart to a YA, the YA may be less likely to prioritize receiving adult services.

Importance of Continuity of Care

Continuity of care is described as a patient’s experiences of care over time and how care is received throughout those visits (Cleverley et al., 2018). Continuity of care has proven in mental health settings to be significantly beneficial to optimizing treatment outcomes and strengthening provider-patient relationships (Polgar et al., 2014). Without warning and preparation for this time period, wait times for tertiary pain treatment could take an average of one to eight weeks, but could be up to a year-long wait (Forgeron et al., 2017).  The burden and difficulty of starting over and taking ownership of pain management can be so great that adults may not get treatment until later in life, if ever. In one study, 41.8% of adults with active chronic pain and a history of chronic pain in childhood were not engaged in adult-centered healthcare for pain (Murray et al., 2022). Continuing care for young adults during this transition time could significantly reduce the utilization of emergency services and ensure preventative steps are being taken to reduce long-term risks of increased pain throughout their lifetime.

Future Directions for Organizations and Providers

In order to fully address the issues noted above, we need shifts in care strategies both at the provider level and the organization level to effectively support patients (Kilanowski, 2017).

Organization-focused

To best support YAs with chronic pain through the transition to adult health care, shifts within systems, as well as on the provider level, must occur. Transition policies based on preparedness may be beneficial for systems to implement (Cleverley et al., 2018). This may entail tracking the individual’s growth progress through transition readiness questionnaires, actively planning transitioning with the patient, referring the patient to the adult provider, and then transferring care while the patient is stable. However, this policy has a variety of application limitations that can vary patient to patient, such as some patients not being mentally/emotionally prepared or medically stable when adult settings may better meet their needs. Another policy to ease transition would be pediatric and adult pain providers sharing care briefly, or a co-treatment appointment to facilitate proper continuity of care (Forgeron et al., 2017). This could allow YAs to explore adult providers with the familiarity and comfort of having their pediatric provider present. Insurance issues of having multiple providers treating a patient at once, as well as time and scheduling restrictions of providers may be limitations of this method. However, for interdisciplinary patients living with pain, changing one provider at a time could create similar effects. More research is needed to explore these complex cases, including at which point(s) in care the organization(s) should intervene to facilitate a smooth transition.

More feasibly, rapport should be created between pediatric and adult pain clinics to aid in the referral process (Forgeron et al., 2017). This rapport could make it easier for pediatric clinics to encourage and accurately describe the adult clinic. Pediatric clinics should provide handouts or educational materials to support patients with further information on the adult clinic setting. Adult clinics understanding their patients’ pediatric care will allow them to cater to or reframe expectations the patient may have.

Provider-focused

            As a pediatric provider, there are steps that can be taken to aid the YA without collaborating with other clinics or making organization-level changes. The Transition Readiness Assessment Questionnaire (TRAQ) has become a validated measure to assess a YA’s readiness for the transitions’ changes (Cleverley et al., 2022; Sawicki et al., 2011). This tool can give both the provider and family areas of strength and weakness to focus on, and further knowledge about where the patient may need more assistance or education. Education should be increased for caregivers on their involvement level, what they will and will not be allowed to access after a certain point, and how they can help teach their child rather than act for them. For the patient, education should focus on insurance, options available for care, and expectations throughout the transition (Oreper et al., 2022). Resources can be found online including infographics for YAs transitioning through organizations like the National Alliance for Mental Illness; however further efforts must be made to create pamphlets and/or similar educational materials that cater directly to patients living with chronic pain. Providers merely answering a YA’s questions on these topics and/or directing them to where to find information can provide the level of social support and allyship that many YAs are asking for (Oreper et al., 2022). Creating a packet of medical history for future potential providers could also take the pressure off of having to explain all they have been through in their initial evaluation. This is particularly important for patients living with pain who are often dealing with lengthy and complex medical histories. Many standards of practice already in use, such as detailed summaries of care, can be advantageous as well, and give adult providers the chance to conduct thorough chart reviews before the initial visit. Most importantly, further research needs to be conducted on these frameworks, other potential

measures, and best methods of practice to support the YA’s transition, as well as creating external resources for families so the responsibility is not solely put on the patient and provider.

Morgan Mitcheson, BS

Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children’s Hospital; Department of Psychiatry, Harvard Medical School email: morgan.mitcheson@childrens.harvard.edu  

Jennifer Christofferson, PhD

Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children’s Hospital; Department of Psychiatry, Harvard Medical School

Sarah Nelson, PhD

Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children’s Hospital; Department of Psychiatry, Harvard Medical School

Leah Reece, PsyD

Department of Anesthesiology, Critical Care, and Pain Medicine, Boston Children’s Hospital; Department of Psychiatry, Harvard Medical School

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