Patient-reported outcome measures used to improve youth mental health services: a systematic review.

BACKGROUND: Patient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires that assess whether healthcare interventions and practices improve patients' health and quality of life. PROMs are commonly implemented in children and youth mental health services, as they increasingly emphasize patient-centered care. The objective of this study was to identify and describe the PROMs that are currently in use with children and youth living with mental health conditions (MHCs). METHODS: Three databases (MEDLINE, EMBASE, and PsycINFO) were systematically searched that used PROMs with children and youth < 18 years of age living with at least one diagnosed MHC. All methods were noted according to Preferred Reporting Items for Systematic reviews and Meta-Analysis. Four independent reviewers extracted data, which included study characteristics (country, year), setting, the type of MHC under investigation, how the PROMs were used, type of respondent, number of items, domain descriptors, and the psychometric properties. RESULTS: Of the 5004 articles returned by the electronic search, 34 full-texts were included in this review. This review identified both generic and disease-specific PROMs, and of the 28 measures identified, 13 were generic, two were generic preference-based, and 13 were disease-specific. CONCLUSION: This review shows there is a diverse array of PROMs used in children and youth living with MHCs. Integrating PROMs into the routine clinical care of youth living with MHCs could improve the mental health of youth. Further research on how relevant these PROMs are children and youth with mental health conditions will help establish more uniformity in the use of PROMs for this population.

Pan-Canadian caregiver experiences in accessing government disability programs: A mixed methods study.

BACKGROUND: At present, little is known about the factors that contribute to the relatively low uptake of government-funded disability programs in Canada. AIM: Understand how parents/caregivers of Canadian youth with neurodevelopmental disability (NDD) experience the process of applying for and accessing disability programs. METHODS AND PROCEDURES: This mixed methods sequential explanatory study utilized two phases: an online survey (quantitative), followed by semi-structured interviews (qualitative). The quantitative phase gathered sociodemographic information and preliminary information about participant experiences applying for and accessing programs. The qualitative phase provided greater depth by asking participants to describe barriers and facilitators to program access. OUTCOMES AND RESULTS: 499 participants completed the online survey and 81 participants completed an interview. Analysis of survey data revealed that many participants are not accessing disability programs and experience difficulty when applying. Regression analyses revealed that factors relating to the process of applying and applicant/family attributes are significantly associated with program access. Inductive thematic analysis of interview data revealed four barriers and three facilitators to access. Integration of findings provided an overview of the multi-faceted journey to program access. CONCLUSIONS AND IMPLICATIONS: The results of this study highlight policy changes that are needed to ensure disability programs adequately support Canadian families.

Longitudinal trends in incidence and health care use for pediatric concussion in Alberta, Canada.

BACKGROUND: We described longitudinal trends in the incidence of episodes of care (EOC) and follow-up care for pediatric concussion in relation to age, sex, rurality of patient residence, point of care, and area-based socioeconomic status (SES) in Alberta, Canada. METHODS: A retrospective population-based cohort study was conducted using linked, province-wide administrative health data for all patients <18 years of age who received a diagnosis of concussion, other specified injuries of head, unspecified injury of head, or post-concussion syndrome between April 1, 2004 and March 31, 2018. Data were geospatially mapped. RESULTS: Concussion EOCs increased 2.2-fold over the study period, follow-up visits 5.1-fold. Care was increasingly received in physician office (PO) settings. Concussion diagnoses in rural and remote areas occurred in emergency department (ED) settings more often than in metro centres or urban areas (76%/75% vs. 52%/60%). Proportion of concussion diagnoses was positively related to SES and age. Diagnosis and point of care varied geographically. CONCLUSIONS: The shift in care to PO settings, increased incidence of all diagnoses, and the higher use of the ED by some segments of the population all have important implications for appropriate clinical management and the efficient provision of health care for pediatric concussion. IMPACT: This is the first study to use EOC to describe longitudinal trends in incidence and follow-up care for pediatric concussion in relation to age, sex, rurality, point of care, and area-based SES. We report increased incidence of concussion in both emergency and outpatient settings and the proportion of diagnoses was positively related to SES and age. Patients increasingly received care for concussion in PO over time. Geospatial mapping indicated that the incidence of concussion and unspecified injury of head varied geographically and temporally. Results have important implications for appropriate clinical management and efficient provision of health care following pediatric concussion.

Acceptability of employment readiness measures in youth and young adults on the autism spectrum: a mixed-methods study.

PURPOSE: Reliable, valid, and pragmatic measures are essential for monitoring and evaluating employment readiness and comparing the effectiveness of alternative implementation strategies. The Work Readiness Inventory (WRI) and Ansell-Casey Life Skills Assessment (ACLSA) are valid measures of employment readiness in neurotypical populations; however, their acceptability (i.e., user perception of measure as agreeable/satisfactory) for persons on the autism spectrum is not yet known. This investigation assesses the acceptability of the WRI and a modified ACLSA (ACLSA-M) in measuring employment readiness in youth/young adults on the spectrum. METHODS: A concurrent triangulation mixed-methods study design utilizing quantitative pre-post measurement of a community-based employment readiness program alongside qualitative survey assessment was employed to determine concurrent acceptability. For robustness, further explication through peer debriefing of experts evaluated the retrospective acceptability via interview and acceptability-rate assessment. RESULTS: Findings indicated that both measures are acceptable, although individual- and job-specific item modifications are advised, particularly due to disability-specific needs. Significant change in employment readiness in youth/young adults on the spectrum supports concurrent acceptability. Peer debriefing provided rich data on retrospective acceptability. Acceptability-rates of 0.84 and 0.91 confirm broad acceptability of these measures. CONCLUSIONS: Implications are presented for clinicians and researchers, highlighting the relevance for autism-specific measurement development and acceptability.Implications for rehabilitationGiven the lower labor force participation of persons on the autism spectrum, a combination of measures should be used in the assessment of an individual's employment readiness.In youth and young adults on the spectrum, employment readiness can be measured using the Work Readiness Inventory (WRI) and a modified version of the Ansell-Casey Life Skills Assessment (ACLSA-M).In clinical practice and research, modifying the contents of these measures may be advised to minimize language complexity, and maximize ease in self report.When designing, developing, and testing new measures in rehabilitation practice or research, the intent should be broadened by involving diverse representation from the project outset, by engaging both those on the spectrum and neurotypical populations.

Factors associated with follow-up care after pediatric concussion: A longitudinal population-based study in Alberta, Canada.

Background: Concussion is a common injury in children and adolescents. Current best practice guidelines indicate that recovery should be supervised through recurrent follow-up visits. A more detailed understanding of the system-level and individual factors that are associated with follow-up care is a critical step towards increasing evidence-based practice. The objective of this study was to identify predisposing, enabling, and need-based factors associated with follow-up care after pediatric concussion. Materials and methods: A retrospective population-based cohort study was conducted using linked, province-wide administrative health data for all patients <18 years of age with a diagnosis of concussion, other specified injuries of the head, unspecified injury of head, or post-concussion syndrome (PCS) between April 1, 2004 and March 31, 2018 in Alberta, Canada. The association between predisposing, enabling, and need-based factors and the receipt of follow-up care within a defined episode of care (EOC) was analyzed using logistic regression models for the entire cohort and for EOC that began with a concussion diagnosis. Predisposing factors included age and sex. Enabling factors included the community type of patient residence, area-based socioeconomic status (SES), and visit year. Need-based factors included where the EOC began (outpatient vs. emergency settings) and history of previous concussion-related EOC. Results: 194,081 EOCs occurred during the study period but only 13% involved follow-up care (n = 25,461). Males and adolescents were more likely to receive follow-up care. Follow-up was less likely among patients who lived in remote communities or in areas of lower SES, while EOCs beginning in 2011 or later were more likely to involve follow-up care. Patients whose EOC began in outpatient settings, had more than one EOC, or a diagnosis of concussion were more likely to receive follow-up care. Conclusion: Follow-up care for pediatric concussion has increased over time and is associated with patient age and sex, history of concussion-related EOC, where a patient lives (community type and area-based SES), and when and where the index visit occurs. A better understanding of which children are more likely to receive follow-up care, as well as how and when they do, is an important step in aligning practice with follow-up guidelines.

Stakeholders' engagement in co-producing policy-relevant knowledge to facilitate employment for persons with developmental disabilities.

BACKGROUND: Persons with developmental disabilities (PWDD) face a number of individual, environmental and societal barriers when seeking employment. Integrated knowledge translation (IKT) involves ongoing and dynamic interactions between researchers and stakeholders for the purpose of engaging in mutually beneficial research to address these types of multi-faceted barriers. There is a knowledge gap in the IKT literature on effective stakeholder engagement strategies outside of the dissemination stage to inform policy. In this paper, we report on a number of engagement strategies employed over a 2-year period to engage a wide range of stakeholders in different stages of an IKT project that aimed to investigate the 'wicked' problem of employment for PWDD. METHOD: Our engagement plan included multiple linked strategies and was designed to ensure the meaningful engagement of, and knowledge co-production with, stakeholders. We held two participatory consensus-building stakeholder policy dialogue events to co-produce knowledge utilising the nominal group technique and the modified Delphi technique. A total of 31 and 49 stakeholders engaged in the first and second events, respectively, from six key stakeholder groups. Focused engagement strategies were employed to build on the stakeholder dialogues for knowledge mobilisation and included a focus group attended only by PWDD, a stakeholder workshop attended only by policy/decision-makers, a webinar attended by human resources professionals and employers, and a current affairs panel attended by the general public. RESULTS: Our findings suggest that the level of engagement for each stakeholder group varies depending on the goal and need of the project. Our stakeholder dialogue findings highlight the inherent challenges in co-framing and knowledge co-production through the meaningful engagement of multiple stakeholders who hold different ideas and interests. Focused outreach is needed to foster relationships and trust for meaningful engagement. CONCLUSIONS: In addition to providing guidance on how to implement adaptable meaningful engagement strategies, these findings contribute to discussions on how IKT projects are planned and funded. More studies to explore effective mechanisms for engaging a wide range of stakeholders in IKT research are needed. More evidence of successful engagement strategies employed by researchers to achieve meaningful knowledge co-production is also key to advancing the discipline.

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities.

Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force.Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data.Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors.Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for cross-sectoral collaboration using a Whole of Government approach.Implications for RehabilitationPersons with a developmental disability face lower levels of labour force participation than any other disability group.Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities.Decision and policy makers need to address barriers to employment for persons with developmental disabilities holistically through policies guiding employers and broader societal behaviour in addition to those aimed at the individuals (such as skill development or training).Due to multi-factorial nature of barriers to employment for persons with developmental disabilities, policy solutions are wide-ranging and fall under the responsibility of multiple sectors for implementation. This calls for cross-sectoral collaboration using a "Whole of Government" approach, with shared goals and integrated responses.