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Perspectives from primary health care providers on their roles for supporting adolescents and young adults transitioning from pediatric services

Perspectives from primary health care providers on their roles for supporting adolescents and... Background: Transitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care (PHC) providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth. Methods: A total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis. Results: Five distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the “common thread” (continuous accessible care); (2) caring for the “whole patient” (comprehensive care); (3) “knowing families” (family-partnered care); (4) “empowering” adolescents and young adults to develop “personal responsibility” (developmentally-appropriate care); and (5) “quarterbacking” care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care). Conclusions: Input from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders. Keywords: Adolescent, Young adult, Transition to adult care, Primary care, Family physicians, Patient-centered care, Delivery of health care, Chronic disease, Qualitative methods * Correspondence: kyleigh.schraeder@ucalgary.ca Department of Pediatrics, Cumming School of Medicine, University of Calgary, 28 Oki Drive, Calgary, Alberta, Canada Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Schraeder et al. BMC Family Practice (2020) 21:140 Page 2 of 12 Background with chronic conditions, many are unclear about why For many adolescents and young adults (AYAs) living and when primary care is needed [17, 22]. Numerous with a chronic health condition (e.g., diabetes, cystic fi- barriers to primary care for AYAs have been described, brosis) and/or long-lasting mental illness (e.g., depres- including inadequate time during appointments to ad- sion, eating disorder), the transition from a pediatric- to dress complex issues [23, 24] and a perceived lack of adult-oriented care system is a complex and challenging knowledge among PHC providers about managing spe- process. As AYAs approach the age of transfer (typically cific pediatric conditions and mental health issues [25, age 18, though this varies across jurisdictions), their 26]. Perspectives from family physicians themselves are regular care provider shifts from a pediatric specialist needed to clarify their role(s) for supporting AYAs dur- (and/or general pediatrician) to a family physician; adult ing the transition from pediatric to adult care. The pur- specialists may also become involved. These transfers or pose of this study was therefore to gain an ‘hand-offs’ between providers can lead to disruptions in understanding about the roles of family physicians, and care for AYAs [1, 2]. For example, AYAs transitioning to potential barriers and facilitators to their involvement new adult providers may experience delays in treatment, during the transition period, from the perspective of deterioration in their health and/or mental health, and family physicians and other Primary Health Care (PHC) disengagement from healthcare services [3, 4]. The im- providers. portance of continuous primary care (by a family phys- ician) has been recommended in best practice transition Methods guidelines [5–7]. Family physicians, who follow their pa- Study design and setting tients and families across the lifespan, may be uniquely We used a qualitative description design, as it focuses equipped to provide transition care for AYAs, but this on describing and exploring a topic of interest, rather has not been adequately studied [8–10]. Understanding than generating a theory from data [27–29]. Qualitative the roles and involvement of family physicians, and description aims to provide a rich, detailed account of other members of the primary care team, for AYAs with participants’ experiences and processes in the their own chronic conditions is criticial for developing and inform- language, and is ideally suited when the existing litera- ing effective models of transition care. ture is limited [30, 31]. This study was approved by the There are a number of reasons why having a family University of Calgary Conjoint Health Research Ethics physician may be beneficial for AYAs transitioning from Board (REB 17–2397). This study followed the Consoli- pediatric services [11]. First, primary care is generally dated Criteria for Reporting Qualitative Studies viewed as more accessible than specialist healthcare ser- (COREQ) guidelines for qualitative research (see Add- vices, and may be convenient for AYAs to receive rou- itional files 2). tine follow-up care than adult specialist clinics [12]. This study was conducted in Calgary in the province of Family physicians also offer continuity of care to their Alberta, Canada, where nearly all primary care is delivered patients, and can act as a “trusted key person” during by family physicians within Primary Care Networks (PCNs) the transition period, as described in research involving [32–34]. PCNs enable the ‘medical home’ in Alberta by long-term pediatric cancer survivors [13, 14]. Recent providing family physician-led clinics with access to multi- work has shown AYAs with diabetes who have continu- disciplinary supports (e.g., dieticians, social workers, ous primary care (or no gaps in primary care) during the nurses). There are 42 PCNs in Alberta, with approximately transition age (i.e., 17 to < 19 years old) may have a 3800 physicians and 1000 other PHC professionals. Calgary lower risk of experiencing adverse outcomes in young has seven PCNs with 1700 family physician members, serv- adulthood (e.g., hospitalizations, diabetes-related admis- ing a catchment population of 1.4 million. sions) [15]; similar findings have also been demonstrated for AYAs with severe mental illness [16]. Much of the Participants and sampling strategy focus in the transition literature has been on transfers Eligible participants were: (i) PHC providers with direct between child- and adult-specialists or subspecialists experience treating or managing AYAs with chronic [17–20], and not on what happens in primary care. A re- conditions, that (ii) could be interviewed in English. Par- cent systematic review of pediatric transition interven- ticipants were recruited through study advertising (e.g. tions yielded only three studies with a primary care internal posting boards, electronic newsletters) in vari- component [21]; none evaluated this component specif- ous networks, including local academic and clinical de- ically. There is currently little empirical evidence to partments of family medicine and PCNs. Purposeful guide practice on the role of family physicians during sampling was used to gain perspectives from PHC pro- the transition process. viders with a range of experiences caring for AYAs with Clarity about the roles of family physicians is needed chronic conditions. Snowball sampling techniques [35] for AYAs and caregivers. From the perspective of AYAs were also used to recruit additional participants with Schraeder et al. BMC Family Practice (2020) 21:140 Page 3 of 12 relevant experiences. Interested participants contacted experts (SS, GD) and family physicians (KM) in Alberta. the research team directly by email, or were introduced We sampled participants in various professional roles to by other participants. Participants signed a consent form gain a comprehensive understanding of the topic [43]. prior to scheduling the interview and, after the interview, Transcripts were checked carefully for accuracy, and received a $50 gift-card in appreciation of their time. three authors (KS, JL, GD) independently reviewed tran- Participants were not known to the interviewer prior to scripts and collaboratively developed and refined themes. their participation. Our analysis was enhanced by triangulation techniques [40] by our interdisciplinary team, comparing interpreta- Data collection and analyses tions between experts in primary care (KM, KS), vulner- Semi-structured interviews were conducted in-person or able youth populations (GD), pediatrics (SS), and mental by telephone with participants between June and Octo- health (KS). Reflexivity processes, such as attending to ber 2018 by the primary author (KS), who had qualita- preconceptions brought into the project and memo- tive research training. Prior to the interview, participants writing, accounted for our influence on the findings as were introduced to the interviewer and completed a researchers [43]. We presented our findings to stake- demographics survey (e.g., age, training background). holder groups as a form of ‘member-checking’, to verify Interview questions covered participants’ experiences the accuracy of our analysis [44]. Finally, our analytic ap- caring for AYAs with chronic conditions and perceived proach involved minimal interpretation, ensuring greater barriers and facilitators to care. Interviews were audio- fidelity to participants’ verbatim accounts. recorded and transcribed verbatim; identifying informa- tion was removed from transcripts to ensure partici- Final sample pants’ confidentiality. Data collection and analyses A total of 18 participants were interviewed. Of the 32 in- occurred simultaneously and iteratively. Authors (KS, JL) dividuals who expressed interest in participating, two read and re-read all transcripts separately and together; were not eligible (i.e., not PHC providers) and 12 did a qualitative methodologist in our team (GD) also not respond or could not be scheduled. Interview reviewed transcripts and provided input throughout the lengths ranged from 20 to 60 min. Sample characteristics analytic process. We first conducted a content analysis are summarized in Tables 1 and 2. Notably, 10 partici- [31], coding “straight descriptions” from the data about pants were family physicians (FP); 8 were members of what participants said or believed. Two authors (KS, JL) the PHC team (e.g., nurse = N, social worker = SW, men- developed an initial coding template, discussed with co- tal health clinician = MH). Most (n = 15, 83.3%) worked authors, and iteratively modified and refined the tem- in an urban practice. plate, before entering it into NVivo [36]. We also followed Braun and Clarke’s[37] steps and conducted Results an inductive thematic analysis [37, 38], whereby mean- Our analysis yielded five distinct, yet overlapping, roles ingfully related codes were combined to create categor- for PHC providers for supporting AYA with chronic ies, subthemes, and themes. Themes represented conditions during the transition from pediatric to adult frequently recurring content and infrequent, yet signifi- care (Fig. 1). These roles are described below with sup- cant and novel, content (e.g., divergent perspectives) [29, porting quotes from the data. Perceived challenges and 39]. Constant comparison techniques [40], comparing opportunities to improve care, organized by role, are experiences within and across participants, were used to summarized in Table 3; additional participant quotes by develop broad conceptual categories. Our research team theme are provided in Additional file 1. met regularly to discuss participant recruitment and the importance of obtaining diverse perspectives to power our findings. For example, an additional physician prac- Role 1: Being a “common thread” across the lifespan ticing in a rural area was recruited to explore potential (continuous accessible care) differences in themes across geographic locations. We Participating family physicians described themselves as a discontinued data collection when it was agreed within “consistent” provider for AYAs during childhood, adoles- our team that the information obtained from partici- cence, and adulthood, and “across the lifespan” in pri- pants was sufficient to fulfill our study aim. Sample size mary care: “we have that ongoing relationship with was deemed adequate in our team when the data suffi- [patients]” (FP3). Participants recognized this role as dis- ciently answered our research question [41, 42]. tinct from other healthcare providers: “with specialists, once you’re better you get discharged. Somebody still has Validity to manage [AYA] long-term” (FP16). By caring for AYAs Rigor and validity were maximized in several ways. Our long-term, some participants reflected the absence of interview guide incorporated feedback from content any “real transition” in primary care: “From a family Schraeder et al. BMC Family Practice (2020) 21:140 Page 4 of 12 Table 1 Characteristics of sample of primary health care doctor’s point of view, there is no arbitrary point where professionals (n = 18) my [patients] don’t become my patients” (FP11). Characteristics % (n) Participants believed continuous primary care was beneficial for AYAs, specifically to “bridge the gap” at Sex transition: “there’s almost no real gap in care. If, in- Female 83.3% (n = 15) between [pediatric-adult care], therewereany delays, Age [AYAs] have me who knows their treatment history … <30–39 55.6% (n = 10) The key was being involved from the beginning” 40–49 16.7% (n =3) (FP11). Participants also believed AYAs transferring > 49 27.8% (n =5) to new specialists may have “one less [new] provider” during their transition, and a provider who “knows” Professional role them, who can help them work through the “losses” Family physician 55.6% (n = 10) [of child-oriented providers]: “[we] know them, will Nurse/Nurse practitioner 16.7% (n =3) take good care of them … [we’re] not just some stran- Social worker 16.7% (n =3) ger who doesn’t understand what their life is about” Dietician 5.6% (n =1) (FP16). Continuous primary care was also perceived Psychologist 5.6% (n =1) as especially important for AYAs with mental health issues, who may encounter significant barriers to Primary Care Network (PCN) affiliation accessing adult services: “Many kids in the adolescent Mosaic 22.2% (n =4) mental health system do not end up in the adult sys- South Calgary 22.2% (n =4) tem, seeing an adult psychiatrist. They stay with the Calgary West Central 22.2% (n =4) family doctor because adult access to mental health Calgary Foothills 16.7% (n =3) services is very poor” (FP19). Rural or Highland 16.7% (n =3) Being involved “from the beginning” was perceived by participants as a major facilitator to continuous Years of professional experience primarycarefor AYAs.Ifparticipantswerenot in- < 5 22.2% (n =4) volved prior to AYAs’ transfer, many expressed feel- 5- < 10 27.8% (n =5) ing “dumped on” by specialists; as articulated by this > 10 50.0% (n =9) family physician: PCP’s main patient population Adults (> 18) 22.2% (n =4) But now [at age 18], the family doctor is the primary care provider all of a sudden? For some [AYAs], I Children/adolescents (< 18) 16.7% (n =3) haven’t seen those kids since they were babies! It just Both 61.1% (n = 11) seems like, when the kid’s 18, it’s like, “Ok, pediatri- Number of children, adolescents, or young adults seen with complex cian’s done. Better go back to your family doctor.” If chronic conditions these kids don’t have a relationship with us, that’sa < 10 27.8% (n =5) bit awkward … that’s 18 years of not seeing the kid! 10–15 16.7% (n =3) [laughs] (FP7) > 15 55.6% (n = 10) Method of children, adolescents, or young adults entrance into care Participants identified potential consequences of pedi- Transferred/referred from pediatric specialist(s) 50.0% (n =9) atricians serving as the “primary care provider” for AYAs prior to age 18; for example, AYAs may assume “the Transferred/referred from adult specialist(s) 22.2% (n =4) pediatrician [or sub-specialist] is there for everything”, Patient self-referred 27.8% (n =5) and thus not recognize the need to maintain relation- Since birth or childhood 33.3% (n =6) ships in primary care. Transferred from other family physician 22.2% (n =4) Timely access to primary care (e.g., offering evening Practice location appointments, “working around school schedules”), were Sub-urban 55.6% (n = 10) perceived to facilitate continuous care. Participants viewed themselves as “more accessible for follow-up” Inner city 27.8% (n =5) compared to AYAs’ specialist providers: “If [AYA] needs Rural 16.7% (n =3) something [refills, prescriptions, forms], and they can’t get PCPs Primary Care Professionals into their specialist, or [it’s] something not related to PCPs indicated receiving AYAs from multiple referral sources, so percentage of cases for method of entrance into care sum to > 100% their specialist, then they have to come to see us” (FP7). A social worker participant described being “the go-to Schraeder et al. BMC Family Practice (2020) 21:140 Page 5 of 12 Table 2 Unique characteristics of participant sample from interview data Unique characteristics n (%) Remuneration model Fee-for-service 8 (44.4%) Salary based 10 (55.6%) Leadership or management position (e.g., medical team lead) 3 (16.7%) Expertise working with marginalized AYA populations Mental health 15 (83.3%) Addictions 4 (22.2%) Homelessness 1 (5.6%) Worked at academic teaching clinic Belongs to more than one PCN, or works in multiple clinics 5 (27.8%) Employed in a “unique role” for AYA (e.g., pediatric case manager) 4 (22.2%) Offers after-school hours (for patient appointments, phone calls, etc.) 5 (27.8%) Co-manages care with pediatricians 7 (38.9%) Works in clinic with umbrella model/offers multiple services 9 (50%) Information was spontaneously provided by participants during interviews person for families”, and “an easy call, easier than [AYA] engagement in primary care (e.g., clinics not “adolescent calling the pediatrician” (SW18). Yet, many participants friendly”; see Table 3). EXPRESSED FRUSTRATION WITH “notoriously high no-show rates” with AYAs and difficulties “getting them in the Role 2: “We know the families” (family-partnered care) door” (MH2). Thus, although participants perceived Most participants described caring for AYAs’ parents themselves to be a consistent provider, they also ac- and families, and viewed this as a unique “advantage” of knowledged potential barriers to continuous AYA their role as a PHC provider. For example, participants Fig. 1 Five key roles of Primary Health Care (PHC) providers for adolescents and young adults with chronic conditions during their transition from pediatric to adult services Schraeder et al. BMC Family Practice (2020) 21:140 Page 6 of 12 Table 3 Barriers and facilitators associated with Primary Health Care (PHC) roles PHC role Examples in practice Barriers to this role Facilitators to this role Role 1: � Being involved as the PHC � AYA only followed by pediatrician prior to � AYA/families continue to Being a “common thread” across provider since birth and all life age 18 see family physician on the patient’s lifespan (continuous transitions � Families/AYA do not attend regular regular basis accessible care) � Being accessible for routine appointments � Trust and long-standing follow-up appointments (e.g., � Minimal involvement by family physician relationship between every 3–6 months) depending on with specialist care AYA patient and PHC condition � Families/AYA re-locating provider � Managing appointments around � Continual family physician involvement not � Convenient appointment school schedules (e.g., after- promoted as conventional practice times for AYAs school hours, university breaks, � AYA/family lack of understanding of role of � Team-based PHC care etc.) “why” they need family physician; no “buy-in” � Lack of access to psychosocial supports in primary care Role 2: � Assessing and managing mental � Not knowing available resources in primary � Having multidisciplinary Providing “holistic care” to AYA health issues care resources within primary (comprehensive team-based primary � Discussing bullying and school � Age cut-offs for available psychosocial sup- care care) � Discussing sexual health ports in primary care; e.g., Nurse only on � Accessible mental health � Assessing safety (e.g., suicidal adult side, or supports only for pediatric resources and supports ideation) populations � PHC provider role � Identifying need for supports � Lack of specialist recommendations for recognized/trusted by (e.g., financial assistance, housing) managing within primary care other providers on team � Lack of familiarity with less common, �‘ Team’ works under one complex medical conditions (e.g., cystic roof fibrosis, non-verbal AYAs) � Resources not accessible for AYA (e.g., location, resource fees) Role 3: � Caring for parents and/or � Family members do not belong to PCN � Family prepared to “We know the families” extended family members of AYA � Uncertainty with addressing legal concerns transfer some (family-partnered care) � Checking-in with parents about (e.g., confidentiality) responsibility of care to AYA’s condition � Practices not “family friendly” or “welcoming” AYA patient � Providing parenting supports to AYA (e.g., family counselling) Role 4: “Empowering” AYA patients � Helping AYAs develop more � Parents who are “challenging” or “will not let � Involvement of parents/ to develop “personal responsibility” responsibility for care go” family members in (developmentally-appropriate care) � Teaching self-management skills � Lack of adolescent health specific training process of AYA � Meeting with AYAs on their own � Practices not “family friendly” or “welcoming” independence without parents to AYA � Specialist providers � Taking a harm-reduction � Lack of time during appointments preparing some support approach for the transfer to adult � Assessing and documenting care mature minor status Role 5: “Quarterback-ing” for AYA � Making referrals to specialists � Considerable time required � Organizing clear (coordinating specialist and � Connecting patients with � Lack of specialist support during treatment plans from community-based care) community-based supports coordination other care providers � Helping patients navigate the � No knowledge of available community � Alternate payment health system resources models to allow for time � Getting a ‘team’ around patient � Lengthy wait-lists for mental health services required for ‘complex’ cases PHC Primary Health Care explained their involvement with parents as beneficial to “Knowing the family, and caring for the family, helps you avoiding gaps in care and staying ‘up-to-date’ with make the right decisions regarding the adolescent’s AYAs’ care: “when parents come in and say, ‘Did you health” (FP19). Participants also believed caring for know my son has an echo and has seen a cardiologist, AYAs’ families helped them gain trust among parents, and we’re planning for next cardiac surgery?’ I’ll take and credibility among AYAs: “I think [AYA] implicitly some time at end of day and update [EMR]” (FP7). An- understands, oh okay you get what’s going on with [my other participant explained asking AYAs: “since we can’t family]. It’s not like talking in a vacuum” (FP16). get together in a month, can I call your mom and ask her Participants described various degrees of involvement how you’re doing in regards to your mood?” (FP11). Car- with families. For some PHC team members, working ing for families was perceived as particularly beneficial with families was a primary role: “A lot of my work is not for comprehensive care, as this gave participants the per say with [AYAs]. My work is mostly with the parent “bigger picture” or “broader lens” on AYA’s needs: [s] actually” (SW18). Some family physicians described Schraeder et al. BMC Family Practice (2020) 21:140 Page 7 of 12 working more with parents because their AYA patients comprehensive care to AYAs (e.g., physical proximity were less likely to attend primary care appointments: between PHC providers, lack of awareness of available “the parents are honestly more likely the ones to come in” PHC resources). (FP3). All participants expressed feeling comfortable working with families, though some expressed a desire Role 4: “Empowering” AYA patients to develop “personal for additional training with unique aspects of AYA care responsibility” (developmentally-appropriate, patient- (e.g., assessing mature minor status, confidentiality is- centered care) sues). Participants acknowledged potential dilemmas Participants described roles for “encouraging”, “empower- (e.g., calling Child Family Services, parent-child conflict), ing”, and “enabling” AYAs to take on more responsibility but these were generally accepted as “part of the job” in for their condition(s) as they became older. Participants family practice: “that’s just a challenge that exists in fam- recognized the transition to adult care as unique, given ily medicine, any time, any age. I don’t feel it’s a down- AYAs’ overlapping developmental transition: “These side” (FP19). patients are not just moving from doctor A-to-B, like a Overall, participants recognized their role to support lot of adult [patients] would be” (FP13). As articulated families of AYAs, and the benefit of having parents in- by one family physician, an important part of their role volved FOR AYAS’ OWN TREATMENT ADHERENCE: “A great was therefore to empower AYAs to develop self- deal depends on the family, and on the parents. If you management skills, and focus on aspects of their care don’t have buy-in from them, then how can you expect important to them: the [AYA] to buy into any of it? They can’t!” (N10). Most felt AYAS appreciated having parents involved in their “What’s most important to the cardiologist is the chronic care: “often kids with chronic complex needs are heart stuff, and what’s most important to the respir- quite happy for their families to be aware of what’s going ologist is the lung stuff. But, I think in family medi- on and kept informed” (FP21). cine, I can say to [my] patient, Ok, there’s a lot of stuff going on, what’s most important to you? That’s Role 3: Providing “holistic care” to AYAs (comprehensive what we can focus on.” (FP3) primary care) “I think our role is to care for the whole patient” (FP3). The process for AYAs to develop “autonomy around Participants described how their knowledge of the their healthcare”, described to start anywhere from 9 to “whole patient” informed their understanding of AYAs’ 16 years old, was emphasized as a gradual process: “We clinical needs, barriers to treatment adherence, and pre- encourage [AYAs] to gradually take more control … its paredness for transition. Opportunities in primary care part of the whole maturation process [of] becoming to monitor and assess important aspects of AYAs’ well- adults” (FP5). For younger AYAs, participants described being were described, including: determinants of health “hand-holding”, “taking the lead” and “not expecting (e.g., financial issues, housing supports), mental health [younger AYAs] to take initiative. [Because] that’s not and psychosocial concerns (e.g., peer relationships, fair to a 13-year old. If you can see they need help, you learning issues, family stressors, coping skills), and “sen- just help [and] follow-up … not let them dwindle away” sitive issues” (e.g., sexual health, contraceptive needs): (FP11). Participants also described encouraging parents “[AYAs] don’t come to the family doctor and just get to discuss their involvement with their child’s care as asked about their chronic condition … even if that’s the they became older: “I always encourage [parents] to chat only reason they come to see you” (FP13). This quote with their child at home, and ask them what they would captured participants’ role in providing comprehensive like. [For example] do they want a parent to come in, or care to AYAs, or care from a “global, and not just med- would they prefer to come in on their own?” (N10). ical, standpoint” (FP5). For older AYAs, participants explained transitioning Some participanting PHC team members described AYAs into a “confidential sphere” and “training [AYAs] working “collaboratively” or “hand-in-hand” with family to be patients” or helping them to attend visits inde- physicians to provide comprehensive primary care. For pendently. They described gradually allowing AYAs to example, one social worker participant described gather- “lead” their appointments in primary care as they ap- ing information from the family to inform treatment proach the age of transfer: “Even if parent is present, I planning: “I’m kind of the puzzle keeper. I’m able to put encourage them to be the one to contribute the most” those pieces of the puzzle together and give the [family] (FP16). Participants viewed meeting with older AYAs on doctor a better history to make those decisions, to help their own as beneficial: “they are allowed to have a confi- them understand [AYA]” (SW14). Barriers to communi- dential relationship with me that doesn’t involve their cation in PHC teams, between family physicians and parent … it lets them bring up any concerns at all. They other providers, were noted to interfere with providing don’t have to censor themselves - I think it promotes full Schraeder et al. BMC Family Practice (2020) 21:140 Page 8 of 12 disclosure” (FP5). One family physician participant held should always come back to the PCN, the family doc- “graduation” visits with AYAs where they signed the tor” (SW18). Yet, other family physicians asserted cer- family practice’s appointment policy (e.g., for cancella- tain aspects of care coordination should not be their tions/no-shows). role, especially if they are not involved prior to trans- Participants’ role caring for families, and “gaining par- fer; for example, with respect to referring to adult ents’ trust”, also facilitated their role of empowering specialists: “it should be the [provider] who is seeing AYAs: “Parents are usually concerned about [AYAs’] them most [before age 18], so they know what [AYA] transition [to] caring for their own health independently. needs” (FP2). Others believed AYA’s pediatrician [Parents] can trust their kid is in good hands if they know should be the “main care coordinator” during transi- the doctor … I think that’s a pretty unique role for family tion, and then follow AYAs post-transfer. Few partici- doctors” (FP19). Others described working one-on-one pants described experiences with “shared care”,orco- with parents to help them “let go” or “try to get them to managing care with AYAs’ other providers prior to take that little step back … allowing their child to start transfer. Some felt uncertain if specialists would be taking on more responsibility” (SW18). Importantly, par- receptive to this model: “I always put my cell phone ticipants described balancing parental involvement and number on the bottom of referrals … but I don’tknow AYA independence at transition. how open [specialist] physicians are to that” (FP3). Overall, instances of collaboration and coordination Role 5: “Quarterbacking” transition care (coordinating during transition between PHC providers and those specialist and community-based services) outside of primary care were variable among All participants described providing some level of care participants. coordination at transition for AYAs with chronic condi- tions. Different metaphors (“hub”, “linker”, “connector”, Summary and relationship between themes etc.) were used to describe the wide range of coordin- During the transition from pediatric to adult care, the ation roles, including: identifying “what’s available and five key roles identified by participants for supporting appropriate” (outside primary care) for AYAs, making AYAs appeared interrelated (see Fig. 1). Prior to transfer, referrals to specialist and/or community-based services, the longitudinal patient-provider relationship PHC pro- providing system-level “navigation support”, etc. Some viders develop with AYAs (Role 1) and their families participants referred to their role as the “quarterback” of (Role 2) allows them to assume Roles 3 and 4, which in- care at transition: “[We] make sure everybody’s on the clude providing “holistic” care and assessing AYAs’ tran- field. If somebody’s gonna go off the field, who’s gonna re- sition preparedness, as well as empowering AYAs to place that person if needed. That’s an integral part of develop autonomy and personal responsibility for their our job” (FP11). care. Participants perceived Roles 1–4 were key to facili- Notably, all participants described care coordination as tate their role in “quarterbacking care”, such as coordin- a “time-consuming” role: “it’s a ton of time, energy … ating specialist and/or community-based services during after-hours time” (FP3). Some felt pressured to “pick up the transition period (Role 5). This ‘quarterback’ role the ball” when AYAs turned 18 years old, with little spe- was perceived as difficult for PHC providers if AYAs cialist support: “it’s like ‘family doctor, go figure it out’” “don’t have a relationship with us” or were not known to (FP11). This was perceived to be problematic when PHC providers prior to AYAs exiting pediatric services. AYAs were transitioning from community-based ser- vices, for example for mental health issues: “There’sno Discussion ‘hand-off’… If they leave a [community] organization, This study described the roles of PHC providers, such as they kind of drop-off. Then come back to me when they’re family physicians, for supporting AYAs with chronic in their early 20s, their mental health is really poorly conditions transitioning from child-oriented care from controlled and they’ve got active addictions” (NP15). the perspective of PHC providers. Our analysis identified Other barriers to care coordination were also described, five clear roles of family physicians and PHC providers which may extend beyond the transition period (e.g., during the transition period, which align with principles lack of remuneration, time required, lack of recommen- of care well-known to primary care (‘the medical home’) dations from specialists or community providers). [11] and pediatric transition guidelines [6, 45]. These There were differing opinions in the data about roles included: (1) being the “common thread” (continu- how much transition care coordination should occur ous accessible care); (2) caring for the “whole patient” within primary care (versus by other providers). Some (comprehensive care); (3) “knowing families” (family- participants believed all care coordination should partnered care); (4) “empowering” AYAs to develop “per- occur in primary care: “I truly think family doctors sonal responsibility” (developmentally-appropriate care); are the case managers … all [patient] information and (5) “quarterbacking” care (coordination of specialist Schraeder et al. BMC Family Practice (2020) 21:140 Page 9 of 12 and/or community-based care). Challenges with care co- their primary care provider, which creates an added ordination, especially between PHC providers and spe- healthcare transition for AYAs who must transfer to a cialty and/or community-based services, were noted to family physician after age 18 [57]. To support the role of interfere with optimal primary care during the transition family physicians and PHC providers, more evidence is period. Below, we discuss how the PHC perspective fits needed on the association of transition health outcomes with existing literature. with continuous primary care, since this may be a pro- One of the main benefits of primary care for AYAs tective factor for AYAs during the transition period. and their families, as noted by our participants, is the Barriers to engaging AYAs with chronic conditions opportunity for long-term patient-provider relationships. may exacerbate discontinuous primary care, but are not It is well documented in the literature that AYAs and uncommon to this age group in primary care [18, 54, families encounter barriers at transition (e.g., “falling off 58–61]. Primary care providers often report a lack of a cliff” at 18 years old, losing child-oriented providers adolescent training, which may interfere with their abil- and systems well-known to them) [46–48]. In primary ity to engage individuals in this age group [60–62]. Some care, family physicians who have cared for AYAs and work suggests AYAs with chronic conditions prefer to their families since childhood, have the opportunity to access their specialists for certain aspects of their health- provide families with a “common thread” or a needed care (e.g., sexual health, mental health) and perceive constant during this vulnerable period of change. Family family physicians as not equipped to manage these issues physicians, and other members of the PHC team, are [17, 22, 63]. Exploring the reasons why AYAs with ideally positioned to monitor AYA’s general health and chronic conditions access, or do not access, primary care well-being (e.g., psychosocial concerns, family stressors, is important for informing PHC-based transition inter- coping skills) and possibly assess for transition prepared- ventions and will be a focus of future work. ness given their knowledge of the “whole patient” [8]. Coordinated care, between PHC providers and special- This type of monitoring in PHC has been suggested for ists, is critically important at the point of transfer, and AYAs with chronic conditions [15, 16, 22, 49]. Specialist also throughout the entire transition continuum (ages 12 providers often expect AYAs with chronic conditions to to 25) [45]. Barriers to care coordination [64, 65], as de- encounter barriers to finding “adult-focused” providers scribed by our participants, emerged as a secondary willing to meet their general healthcare needs [18, 19, focus. Further research on solutions for integrating pri- 50]. In our study, family physician participants were will- mary and specialty care to improve care coordination, ing to monitor AYAs during the transition period, but specifically during the transition period [66], is needed. this willingness appeared dependent on being involved Evidence for the effectiveness of new types of models prior to transfer, or “from the beginning”. (e.g., shared care) during transition is lacking and needs Very few studies have examined the effectiveness of to be further explored [21]. Gaining a better understand- continuous primary care, or having a family physician ing of co-management and follow-up practices, by spe- “involved from the beginning”, on transition outcomes cialists and PHC providers, for AYAs with chronic [15, 16]. For young children with chronic conditions [51, conditions would be a feasible first step to understand- 52], and older adults [53], regular attendance in primary ing what strategies exist and could be effectively scaled care has been linked to improved outcomes (e.g., fewer up. ED visits). Yet, national survey data in the United States suggests less than 50% of AYAs with a chronic condition Strengths and limitations have a “regular source of care” [54–56]. A recent Canad- We sampled PHC providers from a variety of training ian population-based study [16] on AYAs with severe backgrounds, in different locations (rural vs. urban), and mental illness (i.e., schizophrenia, eating disorder, mood with varying levels of experience. A limitation of our disorder) showed two thirds (65.1%) had “continuous” study was that, in order to answer our research question, primary care, or seen by the same physician during tran- we recruited PHC providers with direct experience car- sition (12–26 years old); those with discontinuous pri- ing for AYAs with chronic conditions. Many also re- mary care, and no primary care, had increased rates of ported additional training related to AYA health or mental health-related hospitalizations as young adults. mental health. The experiences of our participants may Prior to transfer, pediatrician involvement with AYAs not reflect all PHC providers. Indeed, some work has re- with chronic conditions may be a barrier to continuous ported high percentages (up to 39%) of primary care primary care, as expressed by our participants. Views providers are reluctant to accept “complex” AYAs, in- about the ideal role of pediatricians before and after cluding AYAs with mental health conditions [67–70]. transition were mixed. In Canada, children with complex Perspectives from additional PHC providers, for example needs and those from families with higher income are those with less experience caring for AYAs, are needed more likely to have a pediatrician (or subspecialist) as Schraeder et al. BMC Family Practice (2020) 21:140 Page 10 of 12 to better understand potential barriers of accepting or Consent for publication Not applicable. managing these patients in their practice. Conclusions Competing interests The authors have no competing interests to disclose. This study was the first to our knowledge to specifically focus on perspectives of PHC providers about the transi- Author details tion to adult care for AYAs with chronic conditions. In- Department of Pediatrics, Cumming School of Medicine, University of Calgary, 28 Oki Drive, Calgary, Alberta, Canada. Faculty of Social Work, put from family physicians, who follow their patients University of Calgary, Calgary, Alberta, Canada. Mathison Centre for Mental across the lifespan and provide the majority of primary Health Research & Education, University of Calgary, Calgary, Alberta, Canada. care, are critical for informing and refining recom- Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada. mended transition practices. 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Perspectives from primary health care providers on their roles for supporting adolescents and young adults transitioning from pediatric services

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Abstract

Background: Transitioning from pediatric care to adult-oriented care at age 18 (the age of transfer in most countries and jurisdictions) is a complex process for adolescents and young adults affected by chronic physical health and/or mental health conditions. The role of primary health care (PHC) providers for this population is poorly understood. Perspectives from these providers, such as family physicians and other members of the primary care team, have not been explored in depth. Methods: A total of 18 participants (e.g., family physicians, social workers, nurses) were recruited from 6 Primary Care Networks in Calgary, Alberta, Canada. Semi-structured individual interviews were conducted, and transcribed verbatim. A qualitative description approach was used to analyze the data, and included thematic analysis. Results: Five distinct, yet overlapping, roles of primary health care providers for adolescents and young adults transitioning to adult care resulted from our analysis: (1) being the “common thread” (continuous accessible care); (2) caring for the “whole patient” (comprehensive care); (3) “knowing families” (family-partnered care); (4) “empowering” adolescents and young adults to develop “personal responsibility” (developmentally-appropriate care); and (5) “quarterbacking” care (coordination of specialist and/or community-based care). Participants identified potential benefits of these roles for adolescents and young adults transitioning to adult care, and barriers in practice (e.g., lack of time, having minimal involvement in pediatric care). Conclusions: Input from family physicians, who follow their patients across the lifespan and provide the majority of primary care in Canada, are critical for informing and refining recommended transition practices. Our findings provide insights, from PHC providers themselves, to bolster the rationale for primary care involvement during transitions from pediatric specialty and community-based care for AYAs. Solutions to overcome barriers for integrating primary care and specialty care for adolescents and young adults need to be identified, and tested, with input from key stakeholders. Keywords: Adolescent, Young adult, Transition to adult care, Primary care, Family physicians, Patient-centered care, Delivery of health care, Chronic disease, Qualitative methods * Correspondence: kyleigh.schraeder@ucalgary.ca Department of Pediatrics, Cumming School of Medicine, University of Calgary, 28 Oki Drive, Calgary, Alberta, Canada Full list of author information is available at the end of the article © The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. Schraeder et al. BMC Family Practice (2020) 21:140 Page 2 of 12 Background with chronic conditions, many are unclear about why For many adolescents and young adults (AYAs) living and when primary care is needed [17, 22]. Numerous with a chronic health condition (e.g., diabetes, cystic fi- barriers to primary care for AYAs have been described, brosis) and/or long-lasting mental illness (e.g., depres- including inadequate time during appointments to ad- sion, eating disorder), the transition from a pediatric- to dress complex issues [23, 24] and a perceived lack of adult-oriented care system is a complex and challenging knowledge among PHC providers about managing spe- process. As AYAs approach the age of transfer (typically cific pediatric conditions and mental health issues [25, age 18, though this varies across jurisdictions), their 26]. Perspectives from family physicians themselves are regular care provider shifts from a pediatric specialist needed to clarify their role(s) for supporting AYAs dur- (and/or general pediatrician) to a family physician; adult ing the transition from pediatric to adult care. The pur- specialists may also become involved. These transfers or pose of this study was therefore to gain an ‘hand-offs’ between providers can lead to disruptions in understanding about the roles of family physicians, and care for AYAs [1, 2]. For example, AYAs transitioning to potential barriers and facilitators to their involvement new adult providers may experience delays in treatment, during the transition period, from the perspective of deterioration in their health and/or mental health, and family physicians and other Primary Health Care (PHC) disengagement from healthcare services [3, 4]. The im- providers. portance of continuous primary care (by a family phys- ician) has been recommended in best practice transition Methods guidelines [5–7]. Family physicians, who follow their pa- Study design and setting tients and families across the lifespan, may be uniquely We used a qualitative description design, as it focuses equipped to provide transition care for AYAs, but this on describing and exploring a topic of interest, rather has not been adequately studied [8–10]. Understanding than generating a theory from data [27–29]. Qualitative the roles and involvement of family physicians, and description aims to provide a rich, detailed account of other members of the primary care team, for AYAs with participants’ experiences and processes in the their own chronic conditions is criticial for developing and inform- language, and is ideally suited when the existing litera- ing effective models of transition care. ture is limited [30, 31]. This study was approved by the There are a number of reasons why having a family University of Calgary Conjoint Health Research Ethics physician may be beneficial for AYAs transitioning from Board (REB 17–2397). This study followed the Consoli- pediatric services [11]. First, primary care is generally dated Criteria for Reporting Qualitative Studies viewed as more accessible than specialist healthcare ser- (COREQ) guidelines for qualitative research (see Add- vices, and may be convenient for AYAs to receive rou- itional files 2). tine follow-up care than adult specialist clinics [12]. This study was conducted in Calgary in the province of Family physicians also offer continuity of care to their Alberta, Canada, where nearly all primary care is delivered patients, and can act as a “trusted key person” during by family physicians within Primary Care Networks (PCNs) the transition period, as described in research involving [32–34]. PCNs enable the ‘medical home’ in Alberta by long-term pediatric cancer survivors [13, 14]. Recent providing family physician-led clinics with access to multi- work has shown AYAs with diabetes who have continu- disciplinary supports (e.g., dieticians, social workers, ous primary care (or no gaps in primary care) during the nurses). There are 42 PCNs in Alberta, with approximately transition age (i.e., 17 to < 19 years old) may have a 3800 physicians and 1000 other PHC professionals. Calgary lower risk of experiencing adverse outcomes in young has seven PCNs with 1700 family physician members, serv- adulthood (e.g., hospitalizations, diabetes-related admis- ing a catchment population of 1.4 million. sions) [15]; similar findings have also been demonstrated for AYAs with severe mental illness [16]. Much of the Participants and sampling strategy focus in the transition literature has been on transfers Eligible participants were: (i) PHC providers with direct between child- and adult-specialists or subspecialists experience treating or managing AYAs with chronic [17–20], and not on what happens in primary care. A re- conditions, that (ii) could be interviewed in English. Par- cent systematic review of pediatric transition interven- ticipants were recruited through study advertising (e.g. tions yielded only three studies with a primary care internal posting boards, electronic newsletters) in vari- component [21]; none evaluated this component specif- ous networks, including local academic and clinical de- ically. There is currently little empirical evidence to partments of family medicine and PCNs. Purposeful guide practice on the role of family physicians during sampling was used to gain perspectives from PHC pro- the transition process. viders with a range of experiences caring for AYAs with Clarity about the roles of family physicians is needed chronic conditions. Snowball sampling techniques [35] for AYAs and caregivers. From the perspective of AYAs were also used to recruit additional participants with Schraeder et al. BMC Family Practice (2020) 21:140 Page 3 of 12 relevant experiences. Interested participants contacted experts (SS, GD) and family physicians (KM) in Alberta. the research team directly by email, or were introduced We sampled participants in various professional roles to by other participants. Participants signed a consent form gain a comprehensive understanding of the topic [43]. prior to scheduling the interview and, after the interview, Transcripts were checked carefully for accuracy, and received a $50 gift-card in appreciation of their time. three authors (KS, JL, GD) independently reviewed tran- Participants were not known to the interviewer prior to scripts and collaboratively developed and refined themes. their participation. Our analysis was enhanced by triangulation techniques [40] by our interdisciplinary team, comparing interpreta- Data collection and analyses tions between experts in primary care (KM, KS), vulner- Semi-structured interviews were conducted in-person or able youth populations (GD), pediatrics (SS), and mental by telephone with participants between June and Octo- health (KS). Reflexivity processes, such as attending to ber 2018 by the primary author (KS), who had qualita- preconceptions brought into the project and memo- tive research training. Prior to the interview, participants writing, accounted for our influence on the findings as were introduced to the interviewer and completed a researchers [43]. We presented our findings to stake- demographics survey (e.g., age, training background). holder groups as a form of ‘member-checking’, to verify Interview questions covered participants’ experiences the accuracy of our analysis [44]. Finally, our analytic ap- caring for AYAs with chronic conditions and perceived proach involved minimal interpretation, ensuring greater barriers and facilitators to care. Interviews were audio- fidelity to participants’ verbatim accounts. recorded and transcribed verbatim; identifying informa- tion was removed from transcripts to ensure partici- Final sample pants’ confidentiality. Data collection and analyses A total of 18 participants were interviewed. Of the 32 in- occurred simultaneously and iteratively. Authors (KS, JL) dividuals who expressed interest in participating, two read and re-read all transcripts separately and together; were not eligible (i.e., not PHC providers) and 12 did a qualitative methodologist in our team (GD) also not respond or could not be scheduled. Interview reviewed transcripts and provided input throughout the lengths ranged from 20 to 60 min. Sample characteristics analytic process. We first conducted a content analysis are summarized in Tables 1 and 2. Notably, 10 partici- [31], coding “straight descriptions” from the data about pants were family physicians (FP); 8 were members of what participants said or believed. Two authors (KS, JL) the PHC team (e.g., nurse = N, social worker = SW, men- developed an initial coding template, discussed with co- tal health clinician = MH). Most (n = 15, 83.3%) worked authors, and iteratively modified and refined the tem- in an urban practice. plate, before entering it into NVivo [36]. We also followed Braun and Clarke’s[37] steps and conducted Results an inductive thematic analysis [37, 38], whereby mean- Our analysis yielded five distinct, yet overlapping, roles ingfully related codes were combined to create categor- for PHC providers for supporting AYA with chronic ies, subthemes, and themes. Themes represented conditions during the transition from pediatric to adult frequently recurring content and infrequent, yet signifi- care (Fig. 1). These roles are described below with sup- cant and novel, content (e.g., divergent perspectives) [29, porting quotes from the data. Perceived challenges and 39]. Constant comparison techniques [40], comparing opportunities to improve care, organized by role, are experiences within and across participants, were used to summarized in Table 3; additional participant quotes by develop broad conceptual categories. Our research team theme are provided in Additional file 1. met regularly to discuss participant recruitment and the importance of obtaining diverse perspectives to power our findings. For example, an additional physician prac- Role 1: Being a “common thread” across the lifespan ticing in a rural area was recruited to explore potential (continuous accessible care) differences in themes across geographic locations. We Participating family physicians described themselves as a discontinued data collection when it was agreed within “consistent” provider for AYAs during childhood, adoles- our team that the information obtained from partici- cence, and adulthood, and “across the lifespan” in pri- pants was sufficient to fulfill our study aim. Sample size mary care: “we have that ongoing relationship with was deemed adequate in our team when the data suffi- [patients]” (FP3). Participants recognized this role as dis- ciently answered our research question [41, 42]. tinct from other healthcare providers: “with specialists, once you’re better you get discharged. Somebody still has Validity to manage [AYA] long-term” (FP16). By caring for AYAs Rigor and validity were maximized in several ways. Our long-term, some participants reflected the absence of interview guide incorporated feedback from content any “real transition” in primary care: “From a family Schraeder et al. BMC Family Practice (2020) 21:140 Page 4 of 12 Table 1 Characteristics of sample of primary health care doctor’s point of view, there is no arbitrary point where professionals (n = 18) my [patients] don’t become my patients” (FP11). Characteristics % (n) Participants believed continuous primary care was beneficial for AYAs, specifically to “bridge the gap” at Sex transition: “there’s almost no real gap in care. If, in- Female 83.3% (n = 15) between [pediatric-adult care], therewereany delays, Age [AYAs] have me who knows their treatment history … <30–39 55.6% (n = 10) The key was being involved from the beginning” 40–49 16.7% (n =3) (FP11). Participants also believed AYAs transferring > 49 27.8% (n =5) to new specialists may have “one less [new] provider” during their transition, and a provider who “knows” Professional role them, who can help them work through the “losses” Family physician 55.6% (n = 10) [of child-oriented providers]: “[we] know them, will Nurse/Nurse practitioner 16.7% (n =3) take good care of them … [we’re] not just some stran- Social worker 16.7% (n =3) ger who doesn’t understand what their life is about” Dietician 5.6% (n =1) (FP16). Continuous primary care was also perceived Psychologist 5.6% (n =1) as especially important for AYAs with mental health issues, who may encounter significant barriers to Primary Care Network (PCN) affiliation accessing adult services: “Many kids in the adolescent Mosaic 22.2% (n =4) mental health system do not end up in the adult sys- South Calgary 22.2% (n =4) tem, seeing an adult psychiatrist. They stay with the Calgary West Central 22.2% (n =4) family doctor because adult access to mental health Calgary Foothills 16.7% (n =3) services is very poor” (FP19). Rural or Highland 16.7% (n =3) Being involved “from the beginning” was perceived by participants as a major facilitator to continuous Years of professional experience primarycarefor AYAs.Ifparticipantswerenot in- < 5 22.2% (n =4) volved prior to AYAs’ transfer, many expressed feel- 5- < 10 27.8% (n =5) ing “dumped on” by specialists; as articulated by this > 10 50.0% (n =9) family physician: PCP’s main patient population Adults (> 18) 22.2% (n =4) But now [at age 18], the family doctor is the primary care provider all of a sudden? For some [AYAs], I Children/adolescents (< 18) 16.7% (n =3) haven’t seen those kids since they were babies! It just Both 61.1% (n = 11) seems like, when the kid’s 18, it’s like, “Ok, pediatri- Number of children, adolescents, or young adults seen with complex cian’s done. Better go back to your family doctor.” If chronic conditions these kids don’t have a relationship with us, that’sa < 10 27.8% (n =5) bit awkward … that’s 18 years of not seeing the kid! 10–15 16.7% (n =3) [laughs] (FP7) > 15 55.6% (n = 10) Method of children, adolescents, or young adults entrance into care Participants identified potential consequences of pedi- Transferred/referred from pediatric specialist(s) 50.0% (n =9) atricians serving as the “primary care provider” for AYAs prior to age 18; for example, AYAs may assume “the Transferred/referred from adult specialist(s) 22.2% (n =4) pediatrician [or sub-specialist] is there for everything”, Patient self-referred 27.8% (n =5) and thus not recognize the need to maintain relation- Since birth or childhood 33.3% (n =6) ships in primary care. Transferred from other family physician 22.2% (n =4) Timely access to primary care (e.g., offering evening Practice location appointments, “working around school schedules”), were Sub-urban 55.6% (n = 10) perceived to facilitate continuous care. Participants viewed themselves as “more accessible for follow-up” Inner city 27.8% (n =5) compared to AYAs’ specialist providers: “If [AYA] needs Rural 16.7% (n =3) something [refills, prescriptions, forms], and they can’t get PCPs Primary Care Professionals into their specialist, or [it’s] something not related to PCPs indicated receiving AYAs from multiple referral sources, so percentage of cases for method of entrance into care sum to > 100% their specialist, then they have to come to see us” (FP7). A social worker participant described being “the go-to Schraeder et al. BMC Family Practice (2020) 21:140 Page 5 of 12 Table 2 Unique characteristics of participant sample from interview data Unique characteristics n (%) Remuneration model Fee-for-service 8 (44.4%) Salary based 10 (55.6%) Leadership or management position (e.g., medical team lead) 3 (16.7%) Expertise working with marginalized AYA populations Mental health 15 (83.3%) Addictions 4 (22.2%) Homelessness 1 (5.6%) Worked at academic teaching clinic Belongs to more than one PCN, or works in multiple clinics 5 (27.8%) Employed in a “unique role” for AYA (e.g., pediatric case manager) 4 (22.2%) Offers after-school hours (for patient appointments, phone calls, etc.) 5 (27.8%) Co-manages care with pediatricians 7 (38.9%) Works in clinic with umbrella model/offers multiple services 9 (50%) Information was spontaneously provided by participants during interviews person for families”, and “an easy call, easier than [AYA] engagement in primary care (e.g., clinics not “adolescent calling the pediatrician” (SW18). Yet, many participants friendly”; see Table 3). EXPRESSED FRUSTRATION WITH “notoriously high no-show rates” with AYAs and difficulties “getting them in the Role 2: “We know the families” (family-partnered care) door” (MH2). Thus, although participants perceived Most participants described caring for AYAs’ parents themselves to be a consistent provider, they also ac- and families, and viewed this as a unique “advantage” of knowledged potential barriers to continuous AYA their role as a PHC provider. For example, participants Fig. 1 Five key roles of Primary Health Care (PHC) providers for adolescents and young adults with chronic conditions during their transition from pediatric to adult services Schraeder et al. BMC Family Practice (2020) 21:140 Page 6 of 12 Table 3 Barriers and facilitators associated with Primary Health Care (PHC) roles PHC role Examples in practice Barriers to this role Facilitators to this role Role 1: � Being involved as the PHC � AYA only followed by pediatrician prior to � AYA/families continue to Being a “common thread” across provider since birth and all life age 18 see family physician on the patient’s lifespan (continuous transitions � Families/AYA do not attend regular regular basis accessible care) � Being accessible for routine appointments � Trust and long-standing follow-up appointments (e.g., � Minimal involvement by family physician relationship between every 3–6 months) depending on with specialist care AYA patient and PHC condition � Families/AYA re-locating provider � Managing appointments around � Continual family physician involvement not � Convenient appointment school schedules (e.g., after- promoted as conventional practice times for AYAs school hours, university breaks, � AYA/family lack of understanding of role of � Team-based PHC care etc.) “why” they need family physician; no “buy-in” � Lack of access to psychosocial supports in primary care Role 2: � Assessing and managing mental � Not knowing available resources in primary � Having multidisciplinary Providing “holistic care” to AYA health issues care resources within primary (comprehensive team-based primary � Discussing bullying and school � Age cut-offs for available psychosocial sup- care care) � Discussing sexual health ports in primary care; e.g., Nurse only on � Accessible mental health � Assessing safety (e.g., suicidal adult side, or supports only for pediatric resources and supports ideation) populations � PHC provider role � Identifying need for supports � Lack of specialist recommendations for recognized/trusted by (e.g., financial assistance, housing) managing within primary care other providers on team � Lack of familiarity with less common, �‘ Team’ works under one complex medical conditions (e.g., cystic roof fibrosis, non-verbal AYAs) � Resources not accessible for AYA (e.g., location, resource fees) Role 3: � Caring for parents and/or � Family members do not belong to PCN � Family prepared to “We know the families” extended family members of AYA � Uncertainty with addressing legal concerns transfer some (family-partnered care) � Checking-in with parents about (e.g., confidentiality) responsibility of care to AYA’s condition � Practices not “family friendly” or “welcoming” AYA patient � Providing parenting supports to AYA (e.g., family counselling) Role 4: “Empowering” AYA patients � Helping AYAs develop more � Parents who are “challenging” or “will not let � Involvement of parents/ to develop “personal responsibility” responsibility for care go” family members in (developmentally-appropriate care) � Teaching self-management skills � Lack of adolescent health specific training process of AYA � Meeting with AYAs on their own � Practices not “family friendly” or “welcoming” independence without parents to AYA � Specialist providers � Taking a harm-reduction � Lack of time during appointments preparing some support approach for the transfer to adult � Assessing and documenting care mature minor status Role 5: “Quarterback-ing” for AYA � Making referrals to specialists � Considerable time required � Organizing clear (coordinating specialist and � Connecting patients with � Lack of specialist support during treatment plans from community-based care) community-based supports coordination other care providers � Helping patients navigate the � No knowledge of available community � Alternate payment health system resources models to allow for time � Getting a ‘team’ around patient � Lengthy wait-lists for mental health services required for ‘complex’ cases PHC Primary Health Care explained their involvement with parents as beneficial to “Knowing the family, and caring for the family, helps you avoiding gaps in care and staying ‘up-to-date’ with make the right decisions regarding the adolescent’s AYAs’ care: “when parents come in and say, ‘Did you health” (FP19). Participants also believed caring for know my son has an echo and has seen a cardiologist, AYAs’ families helped them gain trust among parents, and we’re planning for next cardiac surgery?’ I’ll take and credibility among AYAs: “I think [AYA] implicitly some time at end of day and update [EMR]” (FP7). An- understands, oh okay you get what’s going on with [my other participant explained asking AYAs: “since we can’t family]. It’s not like talking in a vacuum” (FP16). get together in a month, can I call your mom and ask her Participants described various degrees of involvement how you’re doing in regards to your mood?” (FP11). Car- with families. For some PHC team members, working ing for families was perceived as particularly beneficial with families was a primary role: “A lot of my work is not for comprehensive care, as this gave participants the per say with [AYAs]. My work is mostly with the parent “bigger picture” or “broader lens” on AYA’s needs: [s] actually” (SW18). Some family physicians described Schraeder et al. BMC Family Practice (2020) 21:140 Page 7 of 12 working more with parents because their AYA patients comprehensive care to AYAs (e.g., physical proximity were less likely to attend primary care appointments: between PHC providers, lack of awareness of available “the parents are honestly more likely the ones to come in” PHC resources). (FP3). All participants expressed feeling comfortable working with families, though some expressed a desire Role 4: “Empowering” AYA patients to develop “personal for additional training with unique aspects of AYA care responsibility” (developmentally-appropriate, patient- (e.g., assessing mature minor status, confidentiality is- centered care) sues). Participants acknowledged potential dilemmas Participants described roles for “encouraging”, “empower- (e.g., calling Child Family Services, parent-child conflict), ing”, and “enabling” AYAs to take on more responsibility but these were generally accepted as “part of the job” in for their condition(s) as they became older. Participants family practice: “that’s just a challenge that exists in fam- recognized the transition to adult care as unique, given ily medicine, any time, any age. I don’t feel it’s a down- AYAs’ overlapping developmental transition: “These side” (FP19). patients are not just moving from doctor A-to-B, like a Overall, participants recognized their role to support lot of adult [patients] would be” (FP13). As articulated families of AYAs, and the benefit of having parents in- by one family physician, an important part of their role volved FOR AYAS’ OWN TREATMENT ADHERENCE: “A great was therefore to empower AYAs to develop self- deal depends on the family, and on the parents. If you management skills, and focus on aspects of their care don’t have buy-in from them, then how can you expect important to them: the [AYA] to buy into any of it? They can’t!” (N10). Most felt AYAS appreciated having parents involved in their “What’s most important to the cardiologist is the chronic care: “often kids with chronic complex needs are heart stuff, and what’s most important to the respir- quite happy for their families to be aware of what’s going ologist is the lung stuff. But, I think in family medi- on and kept informed” (FP21). cine, I can say to [my] patient, Ok, there’s a lot of stuff going on, what’s most important to you? That’s Role 3: Providing “holistic care” to AYAs (comprehensive what we can focus on.” (FP3) primary care) “I think our role is to care for the whole patient” (FP3). The process for AYAs to develop “autonomy around Participants described how their knowledge of the their healthcare”, described to start anywhere from 9 to “whole patient” informed their understanding of AYAs’ 16 years old, was emphasized as a gradual process: “We clinical needs, barriers to treatment adherence, and pre- encourage [AYAs] to gradually take more control … its paredness for transition. Opportunities in primary care part of the whole maturation process [of] becoming to monitor and assess important aspects of AYAs’ well- adults” (FP5). For younger AYAs, participants described being were described, including: determinants of health “hand-holding”, “taking the lead” and “not expecting (e.g., financial issues, housing supports), mental health [younger AYAs] to take initiative. [Because] that’s not and psychosocial concerns (e.g., peer relationships, fair to a 13-year old. If you can see they need help, you learning issues, family stressors, coping skills), and “sen- just help [and] follow-up … not let them dwindle away” sitive issues” (e.g., sexual health, contraceptive needs): (FP11). Participants also described encouraging parents “[AYAs] don’t come to the family doctor and just get to discuss their involvement with their child’s care as asked about their chronic condition … even if that’s the they became older: “I always encourage [parents] to chat only reason they come to see you” (FP13). This quote with their child at home, and ask them what they would captured participants’ role in providing comprehensive like. [For example] do they want a parent to come in, or care to AYAs, or care from a “global, and not just med- would they prefer to come in on their own?” (N10). ical, standpoint” (FP5). For older AYAs, participants explained transitioning Some participanting PHC team members described AYAs into a “confidential sphere” and “training [AYAs] working “collaboratively” or “hand-in-hand” with family to be patients” or helping them to attend visits inde- physicians to provide comprehensive primary care. For pendently. They described gradually allowing AYAs to example, one social worker participant described gather- “lead” their appointments in primary care as they ap- ing information from the family to inform treatment proach the age of transfer: “Even if parent is present, I planning: “I’m kind of the puzzle keeper. I’m able to put encourage them to be the one to contribute the most” those pieces of the puzzle together and give the [family] (FP16). Participants viewed meeting with older AYAs on doctor a better history to make those decisions, to help their own as beneficial: “they are allowed to have a confi- them understand [AYA]” (SW14). Barriers to communi- dential relationship with me that doesn’t involve their cation in PHC teams, between family physicians and parent … it lets them bring up any concerns at all. They other providers, were noted to interfere with providing don’t have to censor themselves - I think it promotes full Schraeder et al. BMC Family Practice (2020) 21:140 Page 8 of 12 disclosure” (FP5). One family physician participant held should always come back to the PCN, the family doc- “graduation” visits with AYAs where they signed the tor” (SW18). Yet, other family physicians asserted cer- family practice’s appointment policy (e.g., for cancella- tain aspects of care coordination should not be their tions/no-shows). role, especially if they are not involved prior to trans- Participants’ role caring for families, and “gaining par- fer; for example, with respect to referring to adult ents’ trust”, also facilitated their role of empowering specialists: “it should be the [provider] who is seeing AYAs: “Parents are usually concerned about [AYAs’] them most [before age 18], so they know what [AYA] transition [to] caring for their own health independently. needs” (FP2). Others believed AYA’s pediatrician [Parents] can trust their kid is in good hands if they know should be the “main care coordinator” during transi- the doctor … I think that’s a pretty unique role for family tion, and then follow AYAs post-transfer. Few partici- doctors” (FP19). Others described working one-on-one pants described experiences with “shared care”,orco- with parents to help them “let go” or “try to get them to managing care with AYAs’ other providers prior to take that little step back … allowing their child to start transfer. Some felt uncertain if specialists would be taking on more responsibility” (SW18). Importantly, par- receptive to this model: “I always put my cell phone ticipants described balancing parental involvement and number on the bottom of referrals … but I don’tknow AYA independence at transition. how open [specialist] physicians are to that” (FP3). Overall, instances of collaboration and coordination Role 5: “Quarterbacking” transition care (coordinating during transition between PHC providers and those specialist and community-based services) outside of primary care were variable among All participants described providing some level of care participants. coordination at transition for AYAs with chronic condi- tions. Different metaphors (“hub”, “linker”, “connector”, Summary and relationship between themes etc.) were used to describe the wide range of coordin- During the transition from pediatric to adult care, the ation roles, including: identifying “what’s available and five key roles identified by participants for supporting appropriate” (outside primary care) for AYAs, making AYAs appeared interrelated (see Fig. 1). Prior to transfer, referrals to specialist and/or community-based services, the longitudinal patient-provider relationship PHC pro- providing system-level “navigation support”, etc. Some viders develop with AYAs (Role 1) and their families participants referred to their role as the “quarterback” of (Role 2) allows them to assume Roles 3 and 4, which in- care at transition: “[We] make sure everybody’s on the clude providing “holistic” care and assessing AYAs’ tran- field. If somebody’s gonna go off the field, who’s gonna re- sition preparedness, as well as empowering AYAs to place that person if needed. That’s an integral part of develop autonomy and personal responsibility for their our job” (FP11). care. Participants perceived Roles 1–4 were key to facili- Notably, all participants described care coordination as tate their role in “quarterbacking care”, such as coordin- a “time-consuming” role: “it’s a ton of time, energy … ating specialist and/or community-based services during after-hours time” (FP3). Some felt pressured to “pick up the transition period (Role 5). This ‘quarterback’ role the ball” when AYAs turned 18 years old, with little spe- was perceived as difficult for PHC providers if AYAs cialist support: “it’s like ‘family doctor, go figure it out’” “don’t have a relationship with us” or were not known to (FP11). This was perceived to be problematic when PHC providers prior to AYAs exiting pediatric services. AYAs were transitioning from community-based ser- vices, for example for mental health issues: “There’sno Discussion ‘hand-off’… If they leave a [community] organization, This study described the roles of PHC providers, such as they kind of drop-off. Then come back to me when they’re family physicians, for supporting AYAs with chronic in their early 20s, their mental health is really poorly conditions transitioning from child-oriented care from controlled and they’ve got active addictions” (NP15). the perspective of PHC providers. Our analysis identified Other barriers to care coordination were also described, five clear roles of family physicians and PHC providers which may extend beyond the transition period (e.g., during the transition period, which align with principles lack of remuneration, time required, lack of recommen- of care well-known to primary care (‘the medical home’) dations from specialists or community providers). [11] and pediatric transition guidelines [6, 45]. These There were differing opinions in the data about roles included: (1) being the “common thread” (continu- how much transition care coordination should occur ous accessible care); (2) caring for the “whole patient” within primary care (versus by other providers). Some (comprehensive care); (3) “knowing families” (family- participants believed all care coordination should partnered care); (4) “empowering” AYAs to develop “per- occur in primary care: “I truly think family doctors sonal responsibility” (developmentally-appropriate care); are the case managers … all [patient] information and (5) “quarterbacking” care (coordination of specialist Schraeder et al. BMC Family Practice (2020) 21:140 Page 9 of 12 and/or community-based care). Challenges with care co- their primary care provider, which creates an added ordination, especially between PHC providers and spe- healthcare transition for AYAs who must transfer to a cialty and/or community-based services, were noted to family physician after age 18 [57]. To support the role of interfere with optimal primary care during the transition family physicians and PHC providers, more evidence is period. Below, we discuss how the PHC perspective fits needed on the association of transition health outcomes with existing literature. with continuous primary care, since this may be a pro- One of the main benefits of primary care for AYAs tective factor for AYAs during the transition period. and their families, as noted by our participants, is the Barriers to engaging AYAs with chronic conditions opportunity for long-term patient-provider relationships. may exacerbate discontinuous primary care, but are not It is well documented in the literature that AYAs and uncommon to this age group in primary care [18, 54, families encounter barriers at transition (e.g., “falling off 58–61]. Primary care providers often report a lack of a cliff” at 18 years old, losing child-oriented providers adolescent training, which may interfere with their abil- and systems well-known to them) [46–48]. In primary ity to engage individuals in this age group [60–62]. Some care, family physicians who have cared for AYAs and work suggests AYAs with chronic conditions prefer to their families since childhood, have the opportunity to access their specialists for certain aspects of their health- provide families with a “common thread” or a needed care (e.g., sexual health, mental health) and perceive constant during this vulnerable period of change. Family family physicians as not equipped to manage these issues physicians, and other members of the PHC team, are [17, 22, 63]. Exploring the reasons why AYAs with ideally positioned to monitor AYA’s general health and chronic conditions access, or do not access, primary care well-being (e.g., psychosocial concerns, family stressors, is important for informing PHC-based transition inter- coping skills) and possibly assess for transition prepared- ventions and will be a focus of future work. ness given their knowledge of the “whole patient” [8]. Coordinated care, between PHC providers and special- This type of monitoring in PHC has been suggested for ists, is critically important at the point of transfer, and AYAs with chronic conditions [15, 16, 22, 49]. Specialist also throughout the entire transition continuum (ages 12 providers often expect AYAs with chronic conditions to to 25) [45]. Barriers to care coordination [64, 65], as de- encounter barriers to finding “adult-focused” providers scribed by our participants, emerged as a secondary willing to meet their general healthcare needs [18, 19, focus. Further research on solutions for integrating pri- 50]. In our study, family physician participants were will- mary and specialty care to improve care coordination, ing to monitor AYAs during the transition period, but specifically during the transition period [66], is needed. this willingness appeared dependent on being involved Evidence for the effectiveness of new types of models prior to transfer, or “from the beginning”. (e.g., shared care) during transition is lacking and needs Very few studies have examined the effectiveness of to be further explored [21]. Gaining a better understand- continuous primary care, or having a family physician ing of co-management and follow-up practices, by spe- “involved from the beginning”, on transition outcomes cialists and PHC providers, for AYAs with chronic [15, 16]. For young children with chronic conditions [51, conditions would be a feasible first step to understand- 52], and older adults [53], regular attendance in primary ing what strategies exist and could be effectively scaled care has been linked to improved outcomes (e.g., fewer up. ED visits). Yet, national survey data in the United States suggests less than 50% of AYAs with a chronic condition Strengths and limitations have a “regular source of care” [54–56]. A recent Canad- We sampled PHC providers from a variety of training ian population-based study [16] on AYAs with severe backgrounds, in different locations (rural vs. urban), and mental illness (i.e., schizophrenia, eating disorder, mood with varying levels of experience. A limitation of our disorder) showed two thirds (65.1%) had “continuous” study was that, in order to answer our research question, primary care, or seen by the same physician during tran- we recruited PHC providers with direct experience car- sition (12–26 years old); those with discontinuous pri- ing for AYAs with chronic conditions. Many also re- mary care, and no primary care, had increased rates of ported additional training related to AYA health or mental health-related hospitalizations as young adults. mental health. The experiences of our participants may Prior to transfer, pediatrician involvement with AYAs not reflect all PHC providers. Indeed, some work has re- with chronic conditions may be a barrier to continuous ported high percentages (up to 39%) of primary care primary care, as expressed by our participants. Views providers are reluctant to accept “complex” AYAs, in- about the ideal role of pediatricians before and after cluding AYAs with mental health conditions [67–70]. transition were mixed. In Canada, children with complex Perspectives from additional PHC providers, for example needs and those from families with higher income are those with less experience caring for AYAs, are needed more likely to have a pediatrician (or subspecialist) as Schraeder et al. BMC Family Practice (2020) 21:140 Page 10 of 12 to better understand potential barriers of accepting or Consent for publication Not applicable. managing these patients in their practice. Conclusions Competing interests The authors have no competing interests to disclose. This study was the first to our knowledge to specifically focus on perspectives of PHC providers about the transi- Author details tion to adult care for AYAs with chronic conditions. In- Department of Pediatrics, Cumming School of Medicine, University of Calgary, 28 Oki Drive, Calgary, Alberta, Canada. Faculty of Social Work, put from family physicians, who follow their patients University of Calgary, Calgary, Alberta, Canada. Mathison Centre for Mental across the lifespan and provide the majority of primary Health Research & Education, University of Calgary, Calgary, Alberta, Canada. care, are critical for informing and refining recom- Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada. mended transition practices. 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