A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system.

BACKGROUND: Mental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care. METHODS: This study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre's services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals' experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre's operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres' population. DISCUSSION: The findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings.

Exploring paramedic perspectives on emergency medical service (EMS) delivery in Alberta: a qualitative study.

PURPOSE: Emergency Medical Services (EMS) in Alberta are facing critical challenges. This qualitative study aims to describe and understand the frontline perspective regarding system level issues and propose provider-informed policy recommendations. METHODS: 19 semi-structured one-on- one interviews were conducted with Primary or Advanced Care Paramedics (PCP/ACP) across Alberta. Participants were asked to share their perspectives, experiences and recommendations in relation to EMS response times and the working environment. Interviews were analyzed using thematic analysis to identify themes and subthemes. RESULTS: Two core themes were identified as areas of concern: poor response times and the EMS working environment, which each influence and impact the other. Within response times, paramedics highlighted specific difficulties with ED offloading, a lack of resources, low-acuity calls, and rural challenges. In terms of the EMS working environment, four subthemes were apparent including attrition, unhealthy culture, organizational barriers and the need for paramedic empowerment. Providers made many recommendations including creating and expanding emergency mobile integrated health (MIH) branches, sharing 811 and 911 responses, and enforcing ED target offload times amongst other suggestions. CONCLUSIONS: While response times are a key and highly visible problem, there are many critical factors like the EMS working environment that degrade patient care and cause concern amongst frontline practitioners. Multifaceted policy changes are to be explored to reduce disfunction within EMS services, enhance the well-being of the workforce and deliver improved patient care. Specific EMS-oriented policies are important for moving forward to reduce transfers to EDs, but the broader health system which is over capacity is causing downstream effects into EMS must be addressed by government and health administrators.

Digital and Hybrid Pediatric and Youth Mental Health Program Implementation Challenges During the Pandemic: Literature Review With a Knowledge Translation and Theoretical Lens Analysis.

BACKGROUND: The pandemic brought unprecedented challenges for child and youth mental health. There was a rise in depression, anxiety, and symptoms of suicidal ideation. OBJECTIVE: The aims of this knowledge synthesis were to gain a deeper understanding of what types of mental health knowledge translation (KT) programs, mental health first aid training, and positive psychology interventions were developed and evaluated for youth mental health. METHODS: We undertook a literature review of PubMed and MEDLINE for relevant studies on youth mental health including digital and hybrid programs undertaken during the pandemic (2020-2022). RESULTS: A total of 60 studies were included in this review. A few KT programs were identified that engaged with a wide range of stakeholders during the pandemic, and a few were informed by KT theories. Key challenges during the implementation of mental health programs for youth included lack of access to technology and privacy concerns. Hybrid web-based and face-to-face KT and mental health care were recommended. Providers required adequate training in using telehealth and space. CONCLUSIONS: There is an opportunity to reduce the barriers to implementing tele-mental health in youth by providing adequate technological access, Wi-Fi and stationary internet connectivity, and privacy protection. Staff gained new knowledge and training from the pandemic experience of using telehealth, which will serve as a useful foundation for the future. Future research should aim to maximize the benefits of hybrid models of tele-mental health and face-to-face sessions while working on minimizing the potential barriers that were identified. In addition, future programs could consider combining mental health first aid training with hybrid digital and face-to-face mental health program delivery along with mindfulness and resilience building in a unified model of care, knowledge dissemination, and implementation.

Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study.

BACKGROUND: In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare systems. Despite recent initiatives for global harmonization, there remains a lack of consensus on which PROMs are best practice and appropriate. Engagement of the service users, such as patients and family members/caregivers, is vital at this stage to ensure the selected PROMs are feasible, relevant, and acceptable to them. This study aimed to prioritize PROMs by youth and family/caregiver based on feasibility, relevance, and overall importance to be used in the clinical care of youth living with anxiety and/or depression. METHODS: Ten validated and widely used PROMs were presented to the patients and family/caregivers. Nominal group techniques were employed to prioritize the PROMs based on feasibility, relevance, and overall importance. RESULTS: For patients and families/caregivers, the PROMs, Revised Child Anxiety and Depression Scale (RCAD 25), and The Young Person's Core (YP-CORE) were the highest priorities. Both felt that RCAD 25 was comprehensive, short, easy, and quick to complete, whereas regarding YP-CORE, patients and family/caregivers thought it was also short and relevant. Due to some specific concerns, the Strength and Difficulties Questionnaire and Child Health Questionnaire were the lowest prioritized by patients and family/caregivers. CONCLUSION: It is of utmost importance that patient's and family/caregivers' voices or opinions are considered while selecting and implementing PROMs in mental health settings. Our study provides practical recommendations around measures best suited to achieve this.

Clinical and Socioeconomic Associations With Hospital Days and Emergency Department Visits Among Medically Complex Children: A Retrospective Cohort Study.

OBJECTIVES: To estimate associations between clinical and socioeconomic variables and hospital days and emergency department (ED) visits for children with medical complexity (CMCs) for 5 years after index admission. METHODS: Retrospective, longitudinal, population-based cohort study of CMCs in Alberta (n = 12 621) diagnosed between 2010 and 2013 using administrative data linked to socioeconomic data. The primary outcomes were annual cumulative numbers of hospital days and ED visits for 5 years after index admission. Data were analyzed using mixed-effect hurdle regression. RESULTS: Among CMCs utilizing resources, those with more chronic medications had more hospital days (relative difference [RD] 3.331 for ≥5 vs 0 medications in year 1, SE 0.347, P value < .001) and ED visits (RD 1.836 for 0 vs ≥5 medications in year 1, SE 0.133, P value < .001). Among these CMCs, initial length of stay had significant, positive associations with hospital days (RD 1.960-5.097, SE 0.161-0.610, P value < .001 outside of the gastrointestinal and hematology and immunodeficiency groups). Those residing in rural or remote areas had more ED visits than those in urban or metropolitan locations (RD 1.727 for rural versus urban, SE 0.075, P < .001). Material and social deprivation had significant, positive associations with number of ED visits. CONCLUSIONS: Clinical factors are more strongly associated with hospitalizations and socioeconomic factors with ED visits. Policy administrators and researchers aiming to optimize resource use and improve outcomes for CMCs should consider interventions that include both clinical care and socioeconomic support.

Analyzing the Quality of Life in Individuals with Fragile X Syndrome in Relation to Sleep and Mental Health.

The purpose of this paper was to examine the physical, emotional, social and school functioning domains of quality of life of individuals with Fragile X Syndrome, in relation to mental health and sleep patterns to gain a better understanding of how these aspects are affected by the disorder. This study included 119 individuals with Fragile X Syndrome who were given different cognitive examinations by a neuropsychologist or by parent-proxy questionnaires. This study focused on the Pediatric Quality of Life Inventory (PedsQoL), the Anxiety, Depression and Mood Scale (ADAMS), the Children's Sleep Habits Questionnaire (CSHQ), but did include other cognitive tests (Vineland Adaptive Behaviour Scales, Nonverbal IQ, Autism Diagnostic Observation Schedule). We identified significant associations between decreases in emotional, social and school domains of PedsQoL and the ADAMS subtests of Generalized Anxiety, Manic/Hyperactivity and Obsessive/Compulsivity, with the subtest of Depressed Mood having associations with lower physical and emotional domains. We also identified a significant impact between CSHQ subtests of Sleep Anxiety, Night Wakings, Daytime Sleepiness, and Parasomnia with the emotional and school domains of PedsQoL. There were associations connecting school functioning with Bedtime Resistance, and additional associations connecting emotional functioning with Sleep Duration and Sleep Onset Delay. Physical functioning was also associated with Sleep Anxiety. Our study shows how mental health and sleep defects impact improper sleep patterns and mental health which leads to decreases in the quality of life for individuals with FXS, and how it is important to screen for these symptoms in order to alleviate issues.

Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

BACKGROUND: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. AIM: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. METHODS AND PROCEDURES:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. OUTCOMES AND RESULTS: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. CONCLUSIONS AND IMPLICATIONS: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life.