Abstract
Background:
Ongoing primary care during adolescence is recommended by best practice guidelines for adolescents and young adults (AYAs; ages 12-25) with chronic conditions. A synthesis of the evidence on the roles of Primary Care Physicians (PCPs) and benefits of primary care is needed to support existing guidelines.
Methods:
We used Arksey and O’Malley’s scoping review framework, and searched databases (MEDLINE, EMBASE, PsychINFO, CINAHL) for studies that (i) were published in English between 2004 and 2019, (ii) focused on AYAs with a chronic condition(s) who had received specialist pediatric services, and (iii) included relevant findings about PCPs. An extraction tool was developed to organize data items across studies (eg, study design, participant demographics, outcomes).
Results:
Findings from 58 studies were synthesized; 29 (50%) studies focused exclusively on AYAs with chronic health conditions (eg, diabetes, cancer), while 19 (33%) focused exclusively on AYAs with mental health conditions. Roles of PCPs included managing medications, “non-complex” mental health conditions, referrals, and care coordination, etc. Frequency of PCP involvement varied by AYAs; however, female, non-Black, and older AYAs, and those with severe/complex conditions appeared more likely to visit a PCP. Positive outcomes were reported for shared-care models targeting various conditions (eg, cancer, concussion, mental health).
Conclusion:
Our findings drew attention to the importance of effective collaboration among multi-disciplinary specialists, PCPs, and AYAs for overcoming multiple barriers to optimal transitional care. Highlighting the need for further study of the implementation of shared care models to design strategies for care delivery during transitions to adult care.
Introduction
The transition from pediatric to adult care, recommended to start at age 12 and continue until 25, is a challenging process for adolescents and young adults (AYAs) with chronic physical health (eg, diabetes, cystic fibrosis) and/or mental health (eg, depression, schizophrenia)1-3 conditions. Without continuous care during this period, AYAs may disengage from needed healthcare services or experience a worsening of symptoms leading to hospitalization or emergency department utilization.4-6 Prior to transfer (typically at age 1),2,3 it is recommended that AYAs are connected to a primary care physician (PCP), most commonly a family physician in Canada, or equivalent PCP, such as a general practitioner in the United Kingdom.7,8
A systematic review designed to support AYAs exiting pediatric services and enhance their long-term outcomes revealed only 3 studies with a primary care component 9 ; none evaluated the effectiveness of primary care specifically. It is largely unknown what proportion of AYAs with chronic conditions transition to a PCP from pediatric specialist(s), or how PCPs are involved during the transition process. A broader understanding of PCP involvement for AYAs with various chronic conditions, including models of primary-specialty collaborative care, is critical to informing how PCPs can optimally assist during transition.
The purpose of this scoping review was to summarize how PCPs support AYA (ie, 12-25 years old) during the transition period. Sub-questions included: (1) How many AYAs visit a PCP before and after transfer? (2) What are the potential benefits or challenges of PCP involvement during transition? and (3) What models of collaborative primary-specialty care models exist for transition care? This work will inform the development of a primary care intervention to optimize care transitions for AYAs.
Methods
The protocol for this study has been published 10 and registered within the Open Science Framework database (registration DOI: 10.17605/OSF.IO/6X4MQ). This review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extended for scoping reviews checklist 11 (Supplemental Material). A six-step scoping review framework, originally developed by Arksey and O’Malley, 12 and refined by Levac et al 13 and Peters et al14,15 was utilized. A librarian guided the search of multidisciplinary online databases (Figure 1). To identify additional studies of relevance, we applied snowball methods 16 to the reference lists of articles found by the initial search.
Study inclusion flowchart.
Data Analysis
Inclusion/exclusion criteria for eligible studies are summarized in Supplemental Table S1. Briefly, eligible studies were published in English between 2004 and 2019, presented primary research with no limitations on study design, and focused on AYAs with chronic physical health and/or mental health condition(s) who had received care by a specialist physician (eg, psychiatrist, pediatric oncologist). Study screening was completed in triplicate (KS, BA, AF) and occurred at 2 levels: (i) title/abstract and (ii) full-text. Discrepancies about study relevance were resolved via group discussion. A data extraction tool 10 was developed through an iterative process including pilot testing and team consultation. Microsoft Excel and NVivo software 17 were used to track, organize, and extract data. Extracted data included characteristics relevant to: study (eg, year, design), population (eg, AYA mean age, diagnoses), context (eg, country, clinical setting), and concept (eg, relevant findings/outcomes). Where appropriate, we used qualitative description18,19 and summative content analysis, 20 to synthesize data.21,22 We maximized validity and rigor through independent and team analysis of the extracted data, re-reading articles, reviewing supplementary data, and comparing interpretations within our multidisciplinary team. 22
Ethical Approval
Ethical approval was not needed nor sought for this study.
Results
Study Characteristics
From a total of 3176 (nonduplicate) abstracts, 239 full-text articles were screened for eligibility (Figure 1). The final analysis included 58 studies, of which most were conducted in North America and published in or after 2015. Half of the studies (n = 29) focused on AYAs with chronic physical health conditions (eg, type 1 diabetes, sickle cell disease); of these studies, 12 focused on AYA cancer survivors. Nineteen studies focused on AYAs with a primary mental health issue (eg, depression, anxiety). The remaining 10 studies focused on AYA with both physical and mental health conditions (Table 1).
Study Characteristics and Relevant Findings of Included Studies (N = 58 studies).
Abbreviations: ADHD, attention deficit-hyperactivity disorder; ASD, autism spectrum disorder; AUS, Australia; M, mean; PCPs, primary care physicians; R, range; RCT, randomized controlled trial; SD, standard deviation; UK, United Kingdom; US, United States.
Family physicians/GPs included “family physicians,” “general practitioners,” “general practitioners with additional psychiatric training,” and “family medicine practitioners.” Pediatricians also included “consultant community pediatricians,” “general and hospital-based pediatricians,” “primary care pediatricians,” “pediatric primary care physicians.” Nurse Practitioners and Physician Assistants (PAs) also included “advanced practice providers,” “family nurse practitioners,” “nurses,” “pediatric nurse practitioners.” Other PCPs included “general internists” and “doctors of osteopathy.” Other key stakeholders included “diabetes educators,” “health district managers/directors,” “health managers,” “medical directors of health maintenance organizations,” “directors of state or national cancer advocacy organization,” “representatives from National Cancer Institute,” “representatives from the National Cancer Policy Board,” “national congress members,” “health policy experts,” “occupational therapists,” “social workers,” “community youth workers,” “CEO of community project,” and “youth mental health advocate.” Caregivers also included parents and other family members. Psychologists/psychiatrists also included “mental health providers,” “psychotherapists,” and “family therapists.”
AYA mean age in years at enrollment, if applicable.
Models of care are defined in detail in Table 4.
Evidence Summary for Transitioning AYAs and Primary Care
PCP roles and responsibilities: Perceived roles of PCPs for AYAs with chronic conditions who had received (or were receiving) specialist care were described in 18 studies (7 quantitative23,35,47,50,59,60,79; 11 qualitative),55,61,64,66-71,73 which included the perspectives of AYAs and/or their caregivers (n = 6),37,68-70,73,75 specialist providers (n = 4),63,67,68,70 and family physicians (FPs) themselves (n = 14).37,52,61,64-68,70-72,74-76 Common responsibilities of PCPs included: medication management (specifically prescribing and counseling),35,52,61,64,67,70,71 making referrals to specialists and/or community resources,35,64,70,71,73 managing mental health problems until more specialized services were needed or became available,35,61,70,71 serving as care coordinator when multiple services/providers were involved,64,71 and addressing “primary health care issues” (eg, immunizations; discussing lab results; managing flu-like symptoms, acute injury).23,35,73,75 Often PCPs were comfortable with caring for AYAs until their symptoms reached a threshold wherein more expertise was desired/needed.61,67,70,71
Frequency of PCP Visits
In a population survey of caregivers of AYAs with special healthcare needs, 39% of AYAs reported receiving care from a “lifespan-oriented” provider (eg, PCP). 48 In 2 population-based cohort studies,40,41 34% of AYAs with diabetes 41 and 27% of those with severe mental illness 40 saw a different physician during the “transition ages” (ages 17-18) compared to “pre-transition” (ages 12-16), that is, discontinuous primary care. In both studies, AYA with discontinuous or no primary care during transition experienced worse outcomes in young adulthood (ages 19-26).
Six studies reported annual PCP visit rates by AYAs with chronic conditions (cancer survivors23,24; congenital heart disease 44 ; severe mental illness 40 ; diabetes 41 ; complex chronic conditions) 42 ; 4 additional studies also reported PCP visit frequency within the last year based on AYA/caregiver self-report.48,51,54,55 Frequency of PCP visits per year varied within and across studies. For example, AYAs with either muscular dystrophy or complex chronic conditions were observed to have a median of 3 to 4 PCP visits/year, 33 while AYA cancer survivors appeared to have higher PCP visit rates (ie, 7-10 visits/year).23,24 Most studies reported AYAs visiting a PCP at least once a year; however, observation windows varied across studies and none reported annual visit rates during the entire transition period (ages 12-25). The longest observation window (16 years) was reported in 1 longitudinal study 44 of children with congenital heart disease, followed from age 6 to 22; these children were more likely to visit their PCP than their cardiologist over time and their frequency of specialist visits decreased as they became older. Finally, characteristics of AYAs more likely to be seen by a PCP during the transition period included: being female, 24 non-Black, 33 older,24,79 and greater disease severity/complexity (eg, greater number of cancer relapses, 24 increased pain severity, 51 mental health comorbidity). 34
Transfer or discharge from pediatric services: Five intervention studies28-30,38,39 reported rate of transfer to a PCP among AYAs discharged from pediatric services. Most of these studies examined transfer from a specialized pediatric mental health service (eg, early psychosis program 29 ; collaborative child psychiatric consultation model).28,39 The rate of transfer to a PCP in these studies varied based on diagnosis: 24% of those in an early psychosis program, 29 49% with ADHD, 28% with anxiety, and 6% with depression. 28 If AYAs were not discharged to a PCP, they either remained in pediatric services or were transferred to specialized adult mental health services.28,29 Only 1 study 29 outlined specific criteria for AYAs most appropriate for follow-up in primary care: stable (ie, no hospital admissions or emergency services in the last year of treatment), not receiving case management services, and only receiving maintenance (or no) pharmacotherapy. Two studies examined rates of transfer to a PCP from a chronic physical health condition program (Turner syndrome 38 ; diabetes). 30 In the diabetes cohort, 20% transferred to a PCP, 38% to a specialized outpatient unit, and 41% to an adult diabetes center. 30 About 90% of AYAs in the Turner syndrome cohort reported having seen their PCP in follow-up; however, one third indicated their PCP was not aware of their Turner syndrome diagnosis. 38 One study uniquely described a Transition Medical Clinic (TMC) 27 designed specifically to support AYAs with special healthcare needs transitioning to adult care, including primary care. The authors noted the complex nature of AYAs accepted into the clinic made it “impossible to find adult community providers who had the necessary time, training, and resources” (p. 5). 33 As such, the TMC stood as the most suitable “medical home” for patients (up to age 54) who continued to receive care from pediatric providers. 27
Benefits and Challenges to PCP Involvement and Care Collaboration During Transition
The most commonly cited benefit of PCP involvement during the transition period was the positive impact of long-standing relationships between PCPs and AYAs (and family members) on clinical decision-making.64,67,70,71,73,74 This finding was evident across qualitative and mixed methods studies exploring the perspectives of AYAs/caregivers, specialists, and PCPs using interviews, focus groups, and surveys. One study, 67 described the advantages PCPs have in understanding a young person’s needs and the “collateral history” based on their in-depth knowledge of the family. This relationship was reported by psychiatrists and PCPs themselves as advantageous in making decisions about when to refer an AYA for mental health services and which medications to prescribe based on other family members’ responses to medications. 67 PCPs were often described as trusted members of the health care team64,70,74; 1 study highlighted that PCPs felt they were less stigmatizing for AYAs to see than specialists (ie, psychiatrists). 74 Another found AYAs with lifespan-oriented providers (eg, FPs) were more likely to have discussions about adult health needs and adult health insurance compared to AYAs followed solely by child-only providers. 48
The most common barriers associated with PCP involvement for AYAs with chronic conditions included a perceived lack of knowledge by PCPs about chronic conditions and complex mental health conditions, and a lack of training and education in managing AYAs with complex and chronic conditions, which was identified in 12 articles spanning the perspectives of AYAs/caregivers, specialists, and PCPs themselves.61,63,65-70,73-76 Another barrier to PCP involvement for this group was the lack of time to address complex mental health issues during appointments,70-72,74 and inadequate reimbursement for time-intensive responsibilities like providing palliative care or managing complex mental health diagnoses.70,71,75
Thirty studies reported on perceived benefits and/or challenges of primary-specialty care collaboration and are summarized in Table 2. Ten qualitative studies, summarized in Table 3, reported on perceived barriers in the management of AYAs with chronic conditions.
Studies (N = 30; 13 Quantitative and 17 Qualitative or Multi-Methods) Reporting on Perceived Benefits and/or Challenges of Primary-Specialty Care Collaboration for Transition-Age AYAs.
Studies (N = 10, All Qualitative) Reporting on Perceived Barriers to in the Management of AYA With Chronic Conditions.
Shared Care Models of Primary and Specialist Care
Thirteen studies25-28,32,35,39,52,57,69,72,74,77,78 evaluated a shared care model involving some form of collaboration between PCPs and specialists for certain conditions; model summaries are provided in Table 4. Overall, there was a strong preference among PCPs for consultation or shared-care models.35,45,49 Participating PCPs reported this improved their ability to support AYAs with chronic conditions in primary care settings. 37 In 2 studies involving AYA cancer survivors,25,35 a shared-care model substantially increased the number of AYAs followed by a PCP post-intervention compared to a control group receiving usual care. For shared-care models specifically targeting AYAs with mental health issues, participating PCPs reported consultations with mental health specialists helped them to better meet the mental health needs of AYAs and improved their skills in mental health care. 39
Descriptions of Shared Models of Care Presented in Included Studies (n = 14).
Conclusion
This scoping review sought to identify and synthesize available evidence about the involvement of PCPs during transitional care, the potential outcomes of continuous primary care, and the benefits and/or barriers of PCP involvement for AYAs with chronic conditions involved with specialist services. The roles identified to be the shared or sole responsibility of PCPs were managing medications, attending to mild to moderate mental health issues, making referrals to specialists, care coordination, and general health concerns. PCPs involvement was typically reported at diagnosis, or at discharge from specialty services. Frequency of PCP involvement was more often reported through quantitative studies, and varied greatly by condition; however, PCP involvement did appear more likely for female, non-Black, older AYAs, and those with greater disease severity/complexity.
Early PCP involvement among AYAs may facilitate improved uptake of adult-oriented services, increased knowledge and education for the PCP regarding childhood-onset conditions, and ensure continuous care during transition, a period often marked by changes or “hand-offs” between providers and services. In some cases, AYAs with mild to moderate chronic conditions (eg, asthma) may receive all their care within primary care or the “medical home”80-82; yet, research shows PCPs often refer to specialist care for AYAs with chronic conditions. 83 Another study reported that physicians prefer co-management of referred AYAs in more than 2 out of 3 cases. 84 Our review found benefits to shared care models, such as improving the ability of PCPs to provide support to AYAs and increasing retention and follow-up; therefore, facilitating integrated or shared care models may be 1 target of further research or a solution to overcoming multiple barriers to providing optimal transitional care.
Resources including time, money, and access were also reported as barriers. Strategies for overcoming these barriers will be context- and health jurisdiction-specific, requiring the cooperation of clinicians and policy makers. Lack of adequate reimbursement or financial incentives for the extra time required to provide care coordination with multiple services is a modifiable barrier, and reform can be informed by examples of integration of chronic disease diagnostic/billing codes in adult care. Access to care can be improved further by embracing virtual technologies, including smartphone-delivered interventions 85 and e-mental health service delivery, 86 both of which have been found to be acceptable, feasible, and safe by AYA. Adoption of these approaches also serves to promote more accessible digital communication, favored by youth in transition.
Limitations
We excluded articles that did not focus on AYAs (ages 12-25), which may have limited our understanding of beneficial PCP practices for follow-up and management during early childhood or adulthood. We excluded studies which examined the impact of specialized training for PCPs, as the focus of this review was to understand current practices. Studies examining the effectiveness of curricula for integrated care practices warrants further investigation, especially how this training influences practice.87-89 Of note, we did not identify any studies focused on AYAs with HIV or sexually transmitted diseases that met inclusion criteria for this review. These groups warrant further investigation for transitional care and supports given their age of onset often overlaps with the transition period. While we reported on the country and clinical context of the studies included in this review, we recognize that transitional interventions in lower income countries must be considered within these contexts. Few of the included studies offered exhaustive sociodemographic information about AYA race/ethnicity, income, sexual orientation, and/or gender identity, thus potentially impacting the generalizability of our findings to some groups such as LGBTQ2S+ AYA.
Conclusions
We summarized the evidence on PCP involvement for AYAs transitioning from pediatric to adult care. PCP roles included medication management, non-complex mental health referrals, care coordination, and general health care. Frequency of PCP involvement varied greatly across chronic conditions. Long-term, trusting relationships with AYAs and families was an important facilitator of PCP involvement, and this aspect can be strengthened with early engagement of PCPs in AYAs’ care, and continued collaboration with specialists when medical management becomes more complex.
Supplemental Material
sj-docx-1-jpc-10.1177_21501319221084890 – Supplemental material for Community based Primary Care for Adolescents and Young Adults Transitioning From Pediatric Specialty Care: Results from a Scoping Review
Supplemental material, sj-docx-1-jpc-10.1177_21501319221084890 for Community based Primary Care for Adolescents and Young Adults Transitioning From Pediatric Specialty Care: Results from a Scoping Review by Kyleigh Schraeder, Brooke Allemang, Ashley N. Felske, Cathie M. Scott, Kerry A. McBrien, Gina Dimitropoulos and Susan Samuel in Journal of Primary Care & Community Health
Footnotes
Acknowledgements
We acknowledge Rachel Zhao (BEng, MLIS), librarian with Knowledge Resource Services at the Alberta Children’s Hospital for her support and involvement with this project.
Author Contributions
Dr. Schraeder and Ms. Allemang contributed substantially to study conception and design, data acquisition, data analysis, data interpretation, drafting and revising the manuscript. Ms. Felske contributed substantially to data acquisition, data analysis, data interpretation, drafting and revising the manuscript. Drs. Scott, McBrien, Dimitropoulos, and Samuel contributed substantially to study conception and design, data acquisition, supported/supervised data interpretation and substantially contributed to manuscript revisions. All authors approved the final manuscript and agreed to act as guarantor of the work.
Data Sharing Statement
All data presented in this scoping review was obtained from available published articles.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: K. Schraeder was supported by a postdoctoral fellowship by the Canadian Child Health Clinician Scientist Program.
Supplemental Material
Supplemental material for this article is available online.
References
Supplementary Material
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