Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol

Introduction Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. Methods and analysis Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. Ethics and dissemination Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. Protocol registration https://osf.io/beqj

Transition to Adult Care for Youth with Severe Mental Illness: Does Continuity with Primary Care Matter?

Objective: To analyze the association between primary care continuity and acute mental health care services following transition to adult care. Methods: Population-based retrospective cohort study using linked administrative health data of youth ages 12-17 with schizophrenia (SZ), eating disorders (ED), or mood and affective disorders (MAD) admitted between April 1, 2002 and April 1, 2010 in Ontario, Canada. Poisson regression models tested the association of primary care continuity and mental health outcomes after transition. Results: Among 3183 youth with severe mental illness, the majority (n=2,052, 64.5%) received continuous primary care during the transition period. Compared with continuous care, no primary care (n=190) during transition was associated with a 52% increased risk of a mental health admission following transition (aRR 1.52, 95% CI 1.12, 2.05). Conclusions: In the context of decreasing specialist mental health visits, ensuring adequate access to primary care during the transition period may improve outcomes in young adulthood.M.Sc

Benefits of a Transfer Clinic in Adolescent and Young Adult Kidney Transplant Patients

Background: Adolescent and young adult kidney transplant recipients have worse graft outcomes than older and younger age groups. Difficulties in the process of transition, defined as the purposeful, planned movement of adolescents with chronic health conditions from child to adult-centered health care systems, may contribute to this. Improving the process of transition may improve adherence post-transfer to adult care services. Objective: The purpose of this study is to investigate whether a kidney transplant transfer clinic for adolescent and young adult kidney transplant recipients transitioning from pediatric to adult care improves adherence post-transfer. Methods: We developed a joint kidney transplant transfer clinic between a pediatric kidney transplant program, adult kidney transplant program, and adolescent medicine at two academic health centers. The transfer clinic facilitated communication between the adult and pediatric transplant teams, a face-to-face meeting of the patient with the adult team, and a meeting with the adolescent medicine physician. We compared the outcomes of 16 kidney transplant recipients transferred before the clinic was established with 16 patients who attended the clinic. The primary outcome was a composite measure of non-adherence. Non-adherence was defined as either self-reported medication non-adherence or displaying two of the following three characteristics: non-attendance at clinic, non-attendance for blood work appointments, or undetectable calcineurin inhibitor levels within 1 year post-transfer. Results: The two groups were similar at baseline, with non-adherence identified in 43.75 % of patients. Non-adherent behavior in the year post-transfer, which included missing clinic visits, missing regular blood tests, and undetectable calcineurin inhibitor levels, was significantly lower in the cohort which attended the transfer clinic (18.8 versus 62.5 %, p = 0.03). The median change in estimated glomerular filtration rate (eGFR) in the year following transfer was smaller in the group that attended the transition clinic (–0.9 ± 13.2 ml/min/1.73 m 2 ) compared to those who did not (–12.29 ± 14.9 ml/min/1.73 m 2 ), p = 0.045. Conclusions: Attendance at a single kidney transplant transfer clinic was associated with improved adherence and renal function in the year following transfer to adult care. If these changes are sustained, they may improve long-term graft outcomes for adolescent kidney transplant recipients

New and continuing physician-based outpatient mental health care among children and adolescents during the COVID-19 pandemic in Ontario, Canada: a population-based study

ObjectiveTo assess physician-based mental health care utilization during the COVID-19 pandemic among children and adolescents new to care and those already engaged with mental health services, and to evaluate differences by sociodemographic factors.Study designWe performed a population-based repeated cross-sectional study using linked health and administrative databases in Ontario, Canada among all children and adolescents 3–17 years. We examined outpatient visit rates per 1,000 population for mental health concerns for those new to care (no physician-based mental healthcare for ≥1 year) and those with continuing care needs (any physician-based mental healthcare <1 year) following onset of the pandemic.ResultsAmong ~2.5 million children and adolescents (48.7% female, mean age 10.1 ± 4.3 years), expected monthly mental health outpatient visits were 1.5/1,000 for those new to mental health care and 5.4/1,000 for those already engaged in care. Following onset of the pandemic, visit rates for both groups were above expected [adjusted rate ratio (aRR) 1.22, 95% CI 1.17, 1.27; aRR 1.10, 95% CI 1.07, 1.12] for new and continuing care, respectively. The greatest increase above expected was among females (new: aRR 1.33, 95% CI 1.25, 1.42; continuing: aRR 1.22 95% CI 1.17, 1.26) and adolescents ages 13–17 years (new: aRR 1.31, 95% CI 1.27, 1.34; continuing: aRR 1.15 95% CI 1.13, 1.17). Mood and anxiety concerns were prominent among those new to care.ConclusionIn the 18 months following onset of the pandemic, outpatient mental health care utilization increased for those with new and continuing care needs, especially among females and adolescents

Association between physician characteristics and practice-level uptake of paediatric virtual mental healthcare: a population-based study

Objective To examine physician factors associated with practice-level uptake of virtual mental healthcare for children and adolescents.Design, setting and participants A population-based data linkage study of a cohort of all physicians (n=12 054) providing outpatient mental healthcare to children and adolescents (aged 3–17 years, n=303 185) in a single-payer provincial health system in Ontario, Canada from 1 July 2020 to 31 July 2021.Exposures Physician characteristics including gender, age, specialty, location of training, practice region, practice size and overall and mental health practice size.Main outcomes Practice-level proportion of outpatient virtual care provided: (1) mostly in-person (<25% virtual care), (2) hybrid (25%–99% virtual care) or (3) exclusively virtual (100% virtual care). Multinomial logistic regression models tested the association between practice-level virtual care provided and physician characteristics.Results Among physicians, 1589 (13.2%) provided mostly in-person mental healthcare with 8714 (67.8%) providing hybrid care, and 2291 (19.0%) providing exclusively virtual care. The provision of exclusive virtual care (vs mostly in-person) was associated with female sex (adjusted OR (aOR) 1.97, 95% CI 1.70 to 2.27 (ref: male)), foreign training (aOR 1.27, 95% CI 1.07 to 1.50 (ref: Canadian-trained)), family physicians (aOR 2.05, 95% CI 1.56 to 2.69 (ref: psychiatrist)) and reversely associated with large practice size (aOR 0.32, 95% CI 0.25 to 0.40 (ref smallest quintile)). Mostly in-person care was associated with older age physicians (71+ years) and practice outside the Toronto region.Conclusions and relevance In a single-payer universal healthcare system that remunerates physicians using the same fee structure for in-person and virtual outpatient care, there is heterogeneity in utilisation of virtual care that is associated with provider factors. This practice variation, with limited evidence on effectiveness and appropriate contexts for virtual care use, suggests there may be opportunity for further outcomes research and guidance on appropriate context for paediatric virtual mental healthcare delivery

“I Have Eight Different Files at Eight Different Places”: Perspectives of Youths and Their Family Caregivers on Transitioning from Pediatric to Adult Rehabilitation and Community Services

Introduction: The number of young adults (youth) living with childhood-onset disabilities, and requiring transitional support to adult community and rehabilitation services, is increasing. We explored facilitators and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care. Methods: A qualitative descriptive study was conducted in Ontario, Canada. Data were collected through interviews with youth (n = 11) and family caregivers (n = 7). The data were coded and analyzed using thematic analysis. Results: Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access. Conclusions: This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. Future transitional interventions should incorporate these considerations

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol

Introduction Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives.Methods and analysis Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies.Ethics and dissemination Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives.Protocol registration https://osf.io/beqj