Genetics providers' perspectives on the use of digital tools in clinical practice.

PURPOSE: Digital tools are increasingly incorporated into genetics practice to address challenges with the current model of care. Yet, genetics providers' perspectives on digital tool use are not well characterized. METHODS: Genetics providers across Canada were recruited. Semistructured interviews were conducted to ascertain their perspectives on digital tool use and the clinical practice factors that might inform digital tool integration. A qualitative interpretive description approach was used for analysis. RESULTS: Thirty-three genetics providers across 5 provinces were interviewed. Participants had favorable attitudes toward digital tool use. They were open to using digital tools in the pretest phase of the genetic testing pathway and for some posttest tasks or in a hybrid model of care. Participants expressed that digital tools could enhance efficiency and allow providers to spend more time practicing at the top of scope. Providers also described the need for careful consideration of the potential impact of digitalization on the clinician-patient dynamic, access to and equity of care, and unintended digital burden on providers. CONCLUSION: Genetics providers considered digital tools to represent a viable solution for improving access, efficiency, and quality of care in genetics practice. Successful use of digital tools in practice will require careful consideration of their potential unintended impacts.

Assessing the Performance of the Clinician-reported Genetic Testing Utility InDEx (C-GUIDE): Further Evidence of Inter-rater Reliability.

PURPOSE: Advanced genomic and genetic testing technologies are quickly diffusing into clinical practice, but standardized approaches to assessing their clinical utility are limited. Previous work developed and generated preliminary evidence of validity for a novel outcome measure, the Clinician-reported Genetic testing Utility InDEx (C-GUIDE). C-GUIDE is a 17-item measure that captures the utility of genetic testing from the providers' perspective. Preliminary evidence of its inter-rater reliability was obtained through a clinical vignette study. The purpose of this study was to further assess its inter-rater reliability using actual clinical cases. METHODS: One genetic counselor and one medical geneticist independently completed C-GUIDE Version 1.1 after genetic test results were disclosed to a shared set of 42 patients. Raters also completed a case description questionnaire, including information about the patient's age, indication for testing, and type of test performed. Inter-rater reliability was assessed by comparing the raters' C-GUIDE scores using ANOVA to generate intra-class correlation coefficients (ICCs), absolute agreement, and mixed repeated measures ANOVA. FINDINGS: Of the 42 patients studied, the most common indications for testing were hearing loss (n = 18) and craniosynostosis (n = 11), and the most common tests ordered were gene panels (n = 20) and microarrays (n = 10). Test results were diagnostic or partially diagnostic for 11 patients, potentially diagnostic for 14 patients, or nondiagnostic for 17 patients. The overall ICC was 0.95 (95% CI, 0.89-0.97) and absolute agreement was acceptable (>70%) for 15 individual items. Inter-rater agreement was excellent (ICC > 0.90) for 8 items, good (ICC = 0.75-0.89) for 3 items, moderate (ICC = 0.50-0.74) for 4 items and poor (ICC < 0.50) for 2 items. Absolute agreement was unacceptable (<70%), and rater agreement was fair (ICC = 0.40-0.59) for 2 items. For the global rating, the ICC was 0.62 (95% CI, 0.39-0.77), and the absolute agreement was 61.9%. IMPLICATIONS: Rater instructions for item completion have been modified to improve consistency of item interpretation. Although further assessments of reliability are warranted after modifications, these findings provide additional tentative evidence of C-GUIDE's inter-rater reliability and suggest that it may be useful as a strategy for measuring the value of genetic testing, as perceived by genetics providers.

Finding the sweet spot: a qualitative study exploring patients' acceptability of chatbots in genetic service delivery.

Chatbots, web-based artificial intelligence tools that simulate human conversation, are increasingly in use to support many areas of genomic medicine. However, patient preferences towards using chatbots across the range of clinical settings are unknown. We conducted a qualitative study with individuals who underwent genetic testing for themselves or their child. Participants were asked about their preferences for using a chatbot within the genetic testing journey. Thematic analysis employing interpretive description was used. We interviewed 30 participants (67% female, 50% 50 + years). Participants considered chatbots to be inefficient for very simple tasks (e.g., answering FAQs) or very complex tasks (e.g., explaining results). Chatbots were acceptable for moderately complex tasks where participants perceived a favorable return on their investment of time and energy. In addition to achieving this "sweet spot," participants anticipated that their comfort with chatbots would increase if the chatbot was used as a complement to but not a replacement for usual care. Participants wanted a "safety net" (i.e., access to a clinician) for needs not addressed by the chatbot. This study provides timely insights into patients' comfort with and perceived limitations of chatbots for genomic medicine and can inform their implementation in practice.

Applying the Clinician-reported Genetic testing Utility InDEx (C-GUIDE) to genome sequencing: further evidence of validity.

Genome sequencing (GS) outperforms other rare disease diagnostics, but standardized approaches to assessing its clinical utility are limited. This study assessed the validity of the Clinician-reported Genetic testing Utility InDEx (C-GUIDE), a novel tool for assessing the utility of genetic testing from a clinician's perspective, for GS. C-GUIDE ratings were completed for patients who received GS results. For each patient, total C-GUIDE and single item global scores were calculated. Construct validity was assessed using linear regression to determine the association between C-GUIDE total and global item scores and measure the effects of potential explanatory variables. Ratings were completed for 67 pediatric and 36 adult patients. GS indications were neurological for 70.9% and results were diagnostic for 28.2%. When the C-GUIDE assessed primary (PV), secondary (SV), and pharmacogenomic (PGx) variants, on average, a one unit increase in the global item score was associated with an increase of 7.3 in the C-GUIDE score (p < 0.05). Diagnostic results were associated with an increase in C-GUIDE score of 5.0 compared to non-diagnostic results (p < 0.05) and an increase of one SV was associated with an increase of 2.5 (p < 0.05). For children, decreased age of one year was associated with an increase in C-GUIDE score of 0.3 (p < 0.05). Findings provide evidence that C-GUIDE measures the construct of clinical utility in pediatric and adult rare disease populations and is sensitive to changes in utility related to variant type. Quantifying the clinical utility of GS using C-GUIDE can inform efforts to optimize its use in patient care.

The Clinician-reported Genetic testing Utility InDEx (C-GUIDE): Preliminary evidence of validity and reliability.

PURPOSE: Demonstrating the clinical utility of genetic testing is fundamental to clinical adoption and reimbursement, but standardized definitions and measurement strategies for this construct do not exist. The Clinician-reported Genetic testing Utility InDEx (C-GUIDE) offers a novel measure to fill this gap. This study assessed its validity and inter-rater reliability. METHODS: Genetics professionals completed C-GUIDE after disclosure of test results to patients. Construct validity was assessed using regression analysis to measure associations between C-GUIDE and global item scores as well as potentially explanatory variables. Inter-rater reliability was assessed by administering a vignette-based survey to genetics professionals and calculating Krippendorff's α. RESULTS: On average, a 1-point increase in the global item score was associated with an increase of 3.0 in the C-GUIDE score (P < .001). Compared with diagnostic results, partially/potentially diagnostic and nondiagnostic results were associated with a reduction in C-GUIDE score of 9.5 (P < .001) and 10.2 (P < .001), respectively. Across 19 vignettes, Krippendorff's α was 0.68 (95% CI: 0.63-0.72). CONCLUSION: C-GUIDE showed acceptable validity and inter-rater reliability. Although further evaluation is required, C-GUIDE version 1.2 can be useful as a standardized approach to assess the clinical utility of genetic testing.

Genome sequencing among children with medical complexity: What constitutes value from parents' perspective?

Genome sequencing (GS) has demonstrated high diagnostic yield in pediatric patients with complex, clinically heterogeneous presentations. Emerging evidence shows generally favorable experiences for patients and families receiving GS. As a result, implementation of GS in pediatrics is gaining momentum. To inform implementation, we conducted a qualitative study to explore the personal utility of GS for parents of children with medical complexity (CMC). GS was performed at an academic tertiary-care center for CMC for whom a genetic etiology was suspected. Following the return of GS results, semi-structured interviews were conducted with 14 parents about their child's diagnostic journey. Of the children whose parents were interviewed, six children received a diagnosis, two received a possible diagnosis, and six did not receive a diagnosis. A predominantly deductive thematic analysis approach to the interview data was used by applying Kohler's personal utility framework to understand affective, cognitive, behavioral and social impacts of GS. Both the diagnosed and undiagnosed groups experienced enhanced emotion-focused coping (affective). The diagnosed group experienced favorable utility related to knowledge of condition (cognitive) and communication with relatives (behavioral). A domain beyond Kohler's framework related to the presence or absence of GS impact on medical management was also described by parents. The deployment of GS late in the diagnostic odyssey and the limited knowledge available for the rare genetic disorders diagnosed in this cohort appeared to diminish the perceived utility of GS. As GS capabilities continue to evolve at a rapid pace and become available earlier in the diagnostic journey, it is important to consider the impact and timing of testing on parents of CMC.

Utility of Genetic Testing from the Perspective of Parents/Caregivers: A Scoping Review.

In genomics, perceived and personal utility have been proposed as constructs of value that include the subjective meanings and uses of genetic testing. Precisely what constitutes these constructs of utility and how they vary by stakeholder perspective remains unresolved. To advance methods for measuring the value of genetic testing in child health, we conducted a scoping review of the literature to characterize utility from the perspective of parents/caregivers. Peer reviewed literature that included empiric findings from parents/caregivers who received genetic test results for an index child and was written in English from 2016-2020 was included. Identified concepts of utility were coded according to Kohler's construct of personal utility. Of 2142 abstracts screened, 33 met inclusion criteria. Studies reflected a range of genetic test types; the majority of testing was pursued for children with developmental or neurodevelopmental concerns. Coding resulted in 15 elements of utility that mapped to Kohler's four domains of personal utility (affective, cognitive, behavioural and social) and one additional medical management domain. An adapted construct of utility for parents/caregivers may enable specific and standardized strategies for researchers to use to generate evidence of the post-test value of genetic testing. In turn, this will contribute to emerging methods for health technology assessment and policy decision making for genomics in child health.

Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity.

Importance: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reproductive planning. Conventional genetic testing strategies for CMC are often costly, time consuming, and ultimately unsuccessful. Objective: To evaluate the analytical and clinical validity of genome sequencing as a comprehensive diagnostic genetic test for CMC. Design, Setting, and Participants: In this cohort study of the prospective use of genome sequencing and comparison with standard-of-care genetic testing, CMC were recruited from May 1, 2017, to November 30, 2018, from a structured complex care program based at a tertiary care pediatric hospital in Toronto, Canada. Recruited CMC had at least 1 chronic condition, technology dependence (child is dependent at least part of each day on mechanical ventilators, and/or child requires prolonged intravenous administration of nutritional substances or drugs, and/or child is expected to have prolonged dependence on other device-based support), multiple subspecialist involvement, and substantial health care use. Review of the care plans for 545 CMC identified 143 suspected of having an undiagnosed genetic condition. Fifty-four families met inclusion criteria and were interested in participating, and 49 completed the study. Probands, similarly affected siblings, and biological parents were eligible for genome sequencing. Exposures: Genome sequencing was performed using blood-derived DNA from probands and family members using established methods and a bioinformatics pipeline for clinical genome annotation. Main Outcomes and Measures: The primary study outcome was the diagnostic yield of genome sequencing (proportion of CMC for whom the test result yielded a new diagnosis). Results: Genome sequencing was performed for 138 individuals from 49 families of CMC (29 male and 20 female probands; mean [SD] age, 7.0 [4.5] years). Genome sequencing detected all genomic variation previously identified by conventional genetic testing. A total of 15 probands (30.6%; 95% CI 19.5%-44.6%) received a new primary molecular genetic diagnosis after genome sequencing. Three individuals had novel diseases and an additional 9 had either ultrarare genetic conditions or rare genetic conditions with atypical features. At least 11 families received diagnostic information that had clinical management implications beyond genetic and reproductive counseling. Conclusions and Relevance: This study suggests that genome sequencing has high analytical and clinical validity and can result in new diagnoses in CMC even in the setting of extensive prior investigations. This clinical population may be enriched for ultrarare and novel genetic disorders. Genome sequencing is a potentially first-tier genetic test for CMC.

Health-care providers' perspectives on uncertainty generated by variant forms of newborn screening targets.

PURPOSE: Despite the public health successes of newborn bloodspot screening, uncertainty associated with variant forms of primary screening targets has led to discrepancies in medical management. This study explored health-care providers' approaches to managing atypical forms of inherited metabolic diseases (IMDs) in the absence of evidence-based guidelines. METHODS: Semistructured telephone interviews were conducted with metabolic specialists. 3-Methylcrotonyl CoA deficiency and variant forms of phenylketonuria, biotinidase deficiency, and fatty acid oxidation disorders were considered. Data were analyzed inductively and deductively using a novel taxonomy of uncertainty. RESULTS: Health-care providers (n = 12) navigate diagnostic, prognostic, and therapeutic challenges of uncertainty while interpreting patient and family attitudes, preferences, and ideas in the care of children with these result types. Participants explained the limits of classifying mild and atypical metabolic phenotypes. Participants also described the challenge of finding balance between cautious care and overmedicalization. Developing consistent care plans and honest communication with families were perceived as effective strategies when navigating uncertainty. CONCLUSION: Providers' experiences suggest a need for transparent and accessible guidelines that account for challenges associated with uncertainty generated by screening. Timely consideration of this challenge is warranted with increasing emergence of genotype-first approaches to screening.

Genome Diagnostics: Novel Strategies for Measuring Value.

Genetic testing technology is rapidly evolving with the growth of personalized medicine. While test evaluation typically relies on laboratory measures of performance, tests can be costly and analytically and ethically complex. A more fulsome consideration of value is warranted to inform adoption and appropriate use. Herein we describe a methodology for developing novel clinician- and patient-reported measures of clinical and personal utility, aiming to capture the informational value of genome diagnostic tests. Adhering to core measurement science principles and standards, our 4-step process includes (1) tool development through scoping reviews and stakeholder interviews and surveys; (2) tool validation through prospective cohort studies to establish construct validity, inter- and intra-rater reliability; (3) tool application using comparative effectiveness assessment to gauge the comparative value of different types of genetic tests; and (4) tool dissemination, leveraging existing partnerships with international stakeholders to spur additional validation studies, comparative effectiveness research, cost-effectiveness analysis, and evidence-informed policy. A scoping review of the clinical utility literature informed the development of a preliminary 25-item index. Qualitative interviews with 35 clinicians further informed the definition of our utility construct, item content, and item importance. Stakeholder surveys with 113 clinicians enabled further feedback on item content, importance, sensibility, response, and scoring options. An 18-item tool, the "Clinician-reported Genetic testing Utility InDEx" (C-GUIDE), is now undergoing validation, while development work on the patient-reported measure of utility is underway. A methodologically innovative approach to the development of stakeholder-informed and clinimetrically sound measures of value for personalized medicine tests will assist technology users and decision makers globally. DISCLOSURES: This work was supported by the Canadian Institutes of Health Research Operating Grant (#PJT-152880) and the PhRMA Foundation Challenge Award. Publication of the study methodology or findings generated therein was not contingent on the sponsor's approval or censorship of the manuscript. The authors have nothing to disclose. Results from this study were presented as a poster at the 40th Annual North American Meeting of the Society for Medical Decision Making; October 14, 2018; Montreal, QC; the Annual Meeting of the American Society of Human Genetics; October 18, 2018; San Diego, CA; and as an oral presentation at the Annual Meeting of the Canadian Association for Health Services and Policy Research; May 31, 2018; Montreal, QC.

The Perceived Ease of Use and Usefulness of Loop: Evaluation and Content Analysis of a Web-Based Clinical Collaboration System.

BACKGROUND: Patients with complex health care needs require the expertise of many health care providers. Communication, collaboration, and patient-centered care positively impact care quality and patient outcomes. Few technologies exist that facilitate collaboration between providers across settings of care and also engage the patient. We developed a Web-based clinical collaboration system, Loop, to address this gap. The likelihood of a technological system's uptake is associated with its perceived ease of use and perceived usefulness. We engaged stakeholders in the conceptualization and development of Loop in an effort to maximize its intuitiveness and utility. OBJECTIVE: This study aimed to report end users' perceptions about the ease of use and usefulness of Loop captured during usability tests of Loop. METHODS: Participants represented three user types (patients, caregivers, and health care providers) recruited from three populations (adults with cancer, adolescents and young adults with cancer, and children with medical complexity). We conducted usability testing over three iterative cycles of testing and development in both laboratory-based and off-site environments. We performed a content analysis of usability testing transcripts to summarize and describe participant perceptions about the ease of use and usefulness of Loop. RESULTS: Participants enjoyed testing Loop and were able to use the core functions-composing, posting, and reading messages-with little difficulty. They had difficulty interpreting certain visual cues and design elements or the purpose of some features. This difficulty negatively impacted perceived ease of use but was primarily limited to auxiliary features. Participants predicted that Loop could improve the efficiency and effectiveness of communication between care team members; however, this perceived usefulness could be compromised by disruptions to personal workflow such as additional time or task requirements. CONCLUSIONS: Loop was perceived to have value as a collaboration system; however, usability testing findings indicate that some design and functional elements need to be addressed to improve ease of use. Additionally, participant concerns highlight the need to consider how a system can be implemented so as to minimize impact on workflow and optimize usefulness.

Online Peer-to-Peer Mentoring Support for Youth with Hemophilia: Qualitative Needs Assessment.

BACKGROUND: To support adolescents through transition from pediatrics to adult care, health care providers and families help teens gain knowledge and develop self-management skills. Peer mentoring can provide meaningful support and has been associated with improved health outcomes in patients with other chronic conditions. Peer mentoring is an appealing way to provide support, but it is imperative to consider the unique needs of adolescents to ensure its success. OBJECTIVE: The objective of our study was to identify the peer mentoring wants and needs of youth with hemophilia in order to guide the development of a new program. METHODS: In this qualitative study, we interviewed a convenience sample of youth with hemophilia from 2 Canadian hemophilia treatment centers. Two iterative cycles of audiorecorded, semistructured individual interviews were conducted. Descriptive statistics and content analyses were used to organize data into categories that reflected emerging themes. RESULTS: In total, we recruited 23 participants aged 12-20 years, with a mean age of 14.91 (2.57) years. When asked about program design, participants weighed the importance of flexibility in delivery (eg, Web-based, in person, text messaging [short message service]), content (eg, structured vs unstructured), frequency of sessions, and length of the program. Participants identified some potential challenges such as scheduling issues, comfort level for disease discussion, and discordant mentor-mentee personality types. The program was viewed as a positive medium for connecting peers with hemophilia. CONCLUSIONS: Adolescents with hemophilia expressed interest in a peer mentoring program and provided valuable insight that will be applied in the development of a peer mentoring program for youth with hemophilia.

A qualitative content analysis of peer mentoring video calls in adolescents with chronic illness.

This article endeavored to determine the topics of discussion during open-ended peer mentoring between adolescents and young adults living with chronic illness. This study occurred alongside a study of the iPeer2Peer Program. Fifty-two calls (7 mentor-mentee pairings) were audio recorded, transcribed verbatim, and analyzed using inductive coding with an additional 30 calls (21 mentor-mentee pairings) coded to ensure representativeness of the data. Three categories emerged: (1) illness impact (e.g., relationships, school/work, self-identity, personal stories), (2) self-management (e.g., treatment adherence, transition to adult care, coping strategies), and (3) non-illness-related adolescent issues (e.g., post-secondary goals, hobbies, social environments). Differences in discussed topics were noted between sexes and by diagnosis. Peer mentors provided informational, appraisal, and emotional support to adolescents.

Been There, Done That: The Experience of Acting as a Young Adult Mentor to Adolescents Living With Chronic Illness.

Objective: To explore the perceived benefits and challenges of acting as a young adult peer mentor to adolescents with chronic illness. Methods: A qualitative descriptive study, using interviews and a focus group, explored the perceptions of young adult peer mentors following participation in the iPeer2Peer program, a Skype-based peer-mentorship program for adolescents with chronic illness. Interviews and focus group data were transcribed and analyzed using inductive content analysis. Results: Ten peer mentors (20.00 ± 1.49 years old, range 17-22 years; diagnosed with chronic pain [n = 4] or juvenile idiopathic arthritis [n = 6]) who mentored four mentees (±2.55 mentees, range = 1-10 mentees) participated. Four main categories were identified: social connection, personal growth, mentor role in mentee growth, and logistics of mentorship. Conclusions: Acting as a peer mentor online is a feasible and rewarding experience that supports the mentor's own illness self-management, social connection, and personal growth.

The iPeer2Peer Program: a pilot randomized controlled trial in adolescents with Juvenile Idiopathic Arthritis.

BACKGROUND: Adolescents with Juvenile Idiopathic Arthritis (JIA) are at risk for physical, emotional, social and role challenges that negatively impact quality of life. Peer mentoring has been shown to improve positive health behaviours in adolescents with chronic disease while simultaneously providing social support. The objectives of this paper are to examine the feasibility and acceptability of an online peer mentoring program (iPeer2Peer Program) for adolescents with JIA. METHODS: The iPeer2Peer program was examined using a waitlist pilot randomized control trial (RCT). Participants were randomly allocated to the intervention or wait-list control group via a secure, web-based randomization service. Health care providers and investigators were blinded to participant group allocation. Trained peer mentors (16-25 years; successfully managing their JIA) were matched to participants (12-18 years; diagnosed with JIA) randomized to the intervention group to provide peer support and education for effective self-management of JIA. Participant-mentor pairings connected ten times over 8 weeks using Skype video calls. Primary outcomes focused on implementation (i.e. measures of feasibility and acceptability). Secondary outcomes focused on effectiveness (i.e. measures of self-management, self-efficacy, pain, social support and quality of life). RESULTS: Thirty adolescents (mean age 14.3 ± 1.7 years, 97 % female) completed the RCT (intervention n = 16, control n = 14). PRIMARY OUTCOMES: One third (32 %) of adolescents approached agreed to participate, completed baseline measures and were randomized. Half of pairings completed ten calls within 8 weeks. Average call length was twice the required amount with call lengths of 44.72 ± 15.76 min. Participants reported satisfaction with the program and all reported that they would recommend it to their peers. Participants' mean engagement level with the program was 8.53/10 (range = 7-10). SECONDARY OUTCOMES: Participants who completed the iPeer2Peer Program demonstrated improvements in their perceived ability to manage JIA (p < 0.04), compared to controls. No adverse events were reported. CONCLUSION: The iPeer2Peer Program is a promising intervention that improves acceptability of self-management and peer support treatments for adolescents with JIA. By using the Internet to connect mentors to adolescents with JIA it may also improve accessibility to these resources. Findings will be used to adapt the program and refine the methodology for a full-scale RCT. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01986400 . Registered November 11, 2013.

iPeer2Peer program: a pilot feasibility study in adolescents with chronic pain.

Adolescents with chronic pain are often socially isolated, having never met others with chronic pain, and often feel misunderstood by healthy peers. Adolescence is a sensitive period for developing one's sense of self and autonomy, which often occurs in the context of peer relationships. This developmental process is disrupted in adolescents when their chronic pain interferes with their social interactions. Peer mentoring is proposed as a developmentally timely intervention. The aim of this study is to develop and test the feasibility, acceptability, and impact of the iPeer2Peer program. The iPeer2Peer program is a tailored peer mentorship program that provides modeling and reinforcement by peers (trained young adults with chronic pain aged 18-25 years who have learned to successfully manage their pain). This program aimed to enhance self-management of chronic pain in adolescents through 10 Skype video calls over the course of 8 weeks. A pilot randomized controlled trial design using waitlist controls was used in an adolescent chronic pain sample. Twenty-eight adolescents aged 14.8 ± 1.6 years (93% female) completed the trial (intervention: n = 12; control n = 16). Three adolescents completed the intervention after completing their participation in the control arm. The iPeer2Peer program was feasible and acceptable, provided the adolescents were given more time to complete all 10 calls. When compared with controls, adolescents who completed the iPeer2Peer program had significant improvement in self-management skills and their coping efforts were more successful. The iPeer2Peer program is a promising peer mentoring intervention that complements standard care for adolescents with chronic pain.

Program manager perspectives on the service system to meet the needs of youth with concurrent disorders: findings from a Canadian national survey.

BACKGROUND: Concurrent mental health and substance use issues are a serious problem for adolescents and transition-aged youth. Service providers across sectors must be involved in informing system change to meet youth needs. This study examines stakeholder perspectives on services for youth with concurrent disorders including 1) clinical issues in youth services; 2) priority system issues; and 3) optimal knowledge translation strategies to enhance researcher-stakeholder communication. METHODS: A database of youth clinical services across Canada was developed. Program managers (n = 481) at cross-sectoral (mental health, addictions, justice, child welfare, advocacy, and outreach) youth-serving (aged 12-24) programs were invited to complete an online survey; 232 responded. Survey questions concerned youth needs, program characteristics, priorities for service system enhancement; and usual and preferred knowledge translation methods. RESULTS: Across service sectors, the mean estimated proportion of youth using services with concurrent mental health and substance use problems was 55%. Program managers reported routine screening for mental health and substance use concerns (66%), referring to other agencies to meet the concurrent disorder needs of youth (54%), offering specific programming for concurrent disorders (42%), and program evaluation (48%). Notably, mental health programs were significantly less likely to offer concurrent disorders services than addictions programs. Where services do exist, most are targeted at youth aged 12-18 years, with fewer services available for transition-aged youth. Endorsement of various system change goals exceeded 80%, with a particular emphasis on improving access to services (49%), ensuring a continuum of services for varying levels of severity (37%), and improved integration across sectors (36%). Preferred knowledge exchange methods were workshops and websites for receiving information; and focus groups or surveys, rather than intensive participation on research teams, to inform research. CONCLUSIONS: There is a high need to build capacity across most sectors for meeting the needs of youth with co-occurring mental health and substance use problems, especially for transition-aged youth. In addition, limits in program evaluation should be addressed. Innovative knowledge exchange strategies are needed to better meet the needs of youth with concurrent disorders. Although service providers expressed readiness to participate in service enhancement and knowledge translation activities, effective, feasible approaches must integrate strategies likely to result in desired clinical outcomes, given clinical workload challenges.

A Qualitative Study of the Impact of Cancer on Romantic Relationships, Sexual Relationships, and Fertility: Perspectives of Canadian Adolescents and Parents During and After Treatment.

PURPOSE: We sought to gain insight into perspectives around core domains of adolescent development--romantic relationships, sexual relationships, and fertility--from the vantage point of Canadian adolescents and parents during and after cancer treatment. METHODS: Twenty adolescents (12-17 years old at interview) and 20 parents (who may or may not have had an adolescent interviewed) participated in this study. Using a semistructured guide, adolescents and parents were interviewed separately. All interviews were audio-recorded and transcribed. Transcribed interview data were independently coded according to the study objectives by two trained analysts. Codes were organized into categories that reflected emerging themes. Discrepancies in coding were resolved through discussion with the lead investigator. RESULTS: Qualitative analysis revealed main themes for adolescents and parents related to: (1) romantic relationships (opinions on the importance of dating in the context of cancer, expectations that cancer will impact future relationships, dating as a source of moral support, and limited opportunities to engage with partners); (2) sexual relationships (thoughts related to the impact of cancer on future sexual relationships); (3) fertility (initiating treatment as a primary concern and fear of infertility and perceived consequences); and (4) recommendations for care (access to knowledge and support through adolescent-friendly and accessible means). CONCLUSION: Findings from this study highlight cancer-specific relationship and fertility issues faced by adolescents and provide important direction to the development of interventions that may ultimately improve the psychosocial health of adolescents during and after cancer treatment.