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Despite heart and lung transplantation being life-saving therapies for children and adolescents, little research has focused on recipients' lived experience post-transplant. This study captures the subjective experiences of adolescent thoracic transplant recipients, providing insight into the impact of life changes following transplantation in this population.A grounded theory approach guided an iterative process of data collection and data analysis. Adolescent heart and lung transplant recipients were recruited from a large Canadian pediatric teaching hospital to participate in one-on-one semi-structured interviews. Analysis using line-by-line coding and constant comparison methods facilitated reflection and agreement on categories and emergent themes.A total of 27 heart and 5 lung transplant recipients (66% female) participated at a median age of 15.9 years and a median time post-transplant of 2.7 years. Participant narratives illuminated three themes describing (1) personal growth - an awareness of personal strengths and coping abilities, (2) relationship growth - a greater appreciation for family and friends, and (3) introspective growth - a developing life philosophy. Findings suggest that adolescents experience an emergent 'transplanted self', positioning thoracic transplantation as a potential catalyst for positive growth and personal change.The study findings describe pediatric thoracic transplantation as potentially transformative in nature and sheds light on the application of post-traumatic growth theory. Practitioners and researchers are encouraged to acknowledge the possibility of growth, transformation, and positive change that may be possible within the adolescent thoracic transplant experience and leverage such strengths in clinical care.

Résumé Objectifs La présente étude s’est penchée sur le point de vue des enfants relativement au retour en classe après le confinement imposé par la pandémie, sur le port du masque en classe et sur la santé mentale des enfants et des parents pendant la pandémie. Méthodologie La présente étude transversale a fait partie d’un exercice de simulation scolaire de deux jours au cours duquel les élèves ont été répartis au hasard entre diverses recommandations sur le port du masque. Au moyen d’analyses régression multiple, les chercheurs ont analysé le compte rendu des parents sur la santé mentale et, après la simulation, celui des élèves sur l’anxiété liée à la COVID-19 et le port du masque. Les élèves plus âgés ont participé à des groupes de travail semi-structurés pour compléter les données du questionnaire. Résultats Sur les 190 élèves de la présente étude, 31 % ne dépassaient pas la quatrième année et 95 % avaient hâte de rentrer en classe. La plus grande anxiété des parents ou des proches (β= 0,67; p Conclusions Chez les enfants anxieux à cause de la COVID-19, l’anxiété des parents et l’information sur la COVID-19 pourraient être des cibles d’intervention. De futures recherches devraient porter sur les effets de la mise en œuvre prolongée de mesures sanitaires d’atténuation des risques sur la réussite scolaire et la santé mentale des enfants.

Objectives This study examined children’s perspectives about returning to in-person school following lockdown due to the pandemic and about mask-wearing in class, as well as the mental health of children and parents during the pandemic. Methods This cross-sectional study was part of a 2-day school simulation exercise that randomized students to different masking recommendations. Parent-report of mental health and post-simulation child-report of COVID-19-related anxiety and mask-wearing were analyzed using descriptive and multiple regression analyses. Semi-structured focus groups were conducted with older students to supplement questionnaire data. Results Of 190 students in this study, 31% were in grade 4 or lower 95% looked forward to returning to in-person school. Greater child anxiety about COVID-19 was predicted by increased parent/caregiver anxiety (β=0.67; P Conclusions For children anxious about COVID-19, parental anxiety and education about COVID-19 may be targets for intervention. Future research should examine the impact of prolonged implementation of public health mitigation strategies in school on academic achievement and children’s mental health.

The number of pediatric SOT recipients surviving into adulthood is increasing. Thus, understanding their psychosocial and QoL outcomes is important. We conducted a systematic review to collate existing literature examining QoL outcomes (physical functioning, psychological functioning, social functioning), as well as risk and protective factors associated with QoL, among adults who underwent SOT during childhood.A systematic search of five databases, from inception to January 6, 2021, was conducted to identify articles that reported on QoL outcomes for adults (≥18-year of age) who received a SOT during childhood (19-year of age).Twenty-five articles met inclusion criteria. Studies examined QoL across a range of SOT populations (liver, kidney, heart). QoL and psychosocial outcomes were variable; however, the majority of studies indicated QoL in this population to be similar to the general population, or at least similar to other chronic illness groups, with the exception of physical and social functioning. Factors related to a more optimal medical course, younger age at transplant and follow-up, and positive psychosocial functioning, were found to be predictive of better QoL outcomes.While several studies indicated QoL to be similar to the general population, the literature is limited in both quantity and quality. No study employed prospective, longitudinal methodologies to systematically evaluate QoL over time and few studies utilized normative-based measures of QoL. Furthermore, several SOT groups were under-represented in the literature (e.g., lung, intestine, multi-visceral). Nonetheless, findings have implications for intervention and clinical decision-making.

ImportanceWearing a face mask in school can reduce SARS-CoV-2 transmission but it may also lead to increased hand-to-face contact, which in turn could increase infection risk through self-inoculation.ObjectiveTo evaluate the effect of wearing a face mask on hand-to-face contact by children while at school.Design, Setting, and ParticipantsThis prospective randomized clinical trial randomized students from junior kindergarten to grade 12 at 2 schools in Toronto, Ontario, Canada, during August 2020 in a 1:1 ratio to either a mask or control class during a 2-day school simulation. Classes were video recorded from 4 angles to accurately capture outcomes.InterventionsParticipants in the mask arm were instructed to bring their own mask and wear it at all times. Students assigned to control classes were not required to mask at any time (grade 4 and lower) or in the classroom where physical distancing could be maintained (grade 5 and up).Main Outcomes and MeasuresThe primary outcome was the number of hand-to-face contacts per student per hour on day 2 of the simulation. Secondary outcomes included hand-to-mucosa contacts and hand-to-nonmucosa contacts. A mixed Poisson regression model was used to derive rate ratios (RRs), adjusted for age and sex with a random intercept for class with bootstrapped 95% CIs.ResultsA total of 174 students underwent randomization and 171 students (mask group, 50.6% male; control group, 52.4% male) attended school on day 2. The rate of hand-to-face contacts did not differ significantly between the mask and the control groups (88.2 vs 88.7 events per student per hour; RR, 1.00; 95% CI, 0.78-1.28; P = >.99). When compared with the control group, the rate of hand-to-mucosa contacts was significantly lower in the mask group (RR, 0.12; 95% CI, 0.07-0.21), while the rate of hand-to-nonmucosa contacts was higher (RR, 1.40; 95% CI, 1.08-1.82).Conclusions and RelevanceIn this clinical trial of simulated school attendance, hand-to-face contacts did not differ among students required to wear face masks vs students not required to wear face masks; however, hand-to-mucosa contracts were lower in the face mask group. This suggests that mask wearing is unlikely to increase infection risk through self-inoculation.Trial RegistrationClinicalTrials.gov Identifier: NCT04531254

Alcohol and cannabis use as a contraindication to organ transplantation is a controversial issue. Until recently, patients in Canada with alcohol-associated liver disease were required to demonstrate abstinence for 6 mo to receive a liver transplant. There is no equivalent rule that is applied consistently for cannabis use. There is some evidence that alcohol and cannabis use disorder pretransplant could be associated with worse outcomes posttransplantation. However, early liver transplantation for patients with alcohol-associated liver disease in France and in the United States has led to challenges of the 6-mo abstinence rule in Canada in the media. It has also resulted in several legal challenges arguing that the rule violates human rights laws regarding discrimination in the provision of medical services and that the rule is also unconstitutional (this challenge is still before the court). Recent legalization of cannabis use for adults in Canada has led to questions about the appropriateness of limiting transplant access based on cannabis use. The ethics committee of the Canadian Society of Transplantation was asked to provide an ethical analysis of cannabis and alcohol abstinence policies. Our conclusions were as follows: neither cannabis use nor the 6-mo abstinence rule for alcohol use should be an absolute contraindication to transplantation, and transplant could be offered to selected patients, further research should be conducted to ensure evidence-based policies; and the transplant community has a duty not to perpetuate stigma associated with alcohol and cannabis use disorders.

IntroductionMothers are often the primary caregivers for children requiring heart transplantation. Given that a mother’s ability to successfully cope with the demands of her caregiving role may be predictive of positive familial psychosocial outcomes, it is critical that maternal coping is assessed and supported in paediatric healthcare. Mindfulness-based programmes are proposed as one intervention that may enhance quality of life, improve distress tolerance and coping and reduce social isolation in caregiving populations. This pilot study aims to investigate: (1) the implementation success of a mindfulness-based retreat (MBR), and (2) the effectiveness of a MBR at improving quality of life, distress tolerance, coping and perceived social support for mothers of paediatric heart transplant recipients.Methods and analysisA convergent parallel, mixed-method design is proposed for this pilot, exploratory study. Twenty mothers will participate in this pilot MBR held at a resort in Ontario, Canada. Quantitative data will be obtained using five standardised instruments completed at three time points: (T1) 24-hours prior to the intervention, (T2) immediately on completion of the intervention, and (T3) three months post-intervention. Qualitative data will be collected from all participants both through semi-structured focus groups at T2 and individual telephone interviews at T3. Focus groups and individual interviews will be transcribed verbatim for thematic analysis. Quantitative and qualitative data will be merged and compared during interpretation to ensure that the intervention implementation and effectiveness of the MBR retreat are described with comprehensive accuracy. The primary outcomes will be feasibility in relation to implementation effectiveness and participants’ perception of social support for efficacy of the MBR intervention.Ethics and disseminationThis study received Institutional Research Ethics Board approval from The Hospital for Sick Children (Number: 1000064719). Informed consent will be obtained prior to participant enrolment. Findings will be disseminated via conference presentations and submitted for publication in a peer-reviewed journal.

We surveyed Canadian critical care physicians who may care for patients who are potential organ donors to understand their attitudes and knowledge of legislation governing the deceased organ donation system. We used a web-based, self-administered survey that included questions related to opt-out consent and mandatory referral legislation. Potential participants were identified through membership lists of professional societies and manual searches. We designed our survey using standardized methods and administered it in February and March 2018. Fifty percent (263/529) of potential participants completed the questionnaire. A majority (61%; 144/235) supported a change towards an opt-out consent model, and 77% (181/235) stated they believe it would increase donation rates. Asked if opt-out consent would change their practices, 71% (166/235) stated an opt-out model would not change how or if they approach families to discuss donation. Fifty-six percent (139/249) supported mandatory referral laws, while only 42% (93/219) of those working in provinces with mandatory referral correctly stated that such laws exist in their province. Respondents gave variable responses on who should be accountable when patients are not referred, and 16% (40/249) believed no one should be held accountable. While a majority of critical care physicians supported opt-out consent and mandatory referral, many were neutral or against it. Many were unaware of existing laws and had variable opinions on how to ensure accountability. Efforts to increase understanding of how legislative models influence practice are required for any law to achieve its desired effect.

The purpose of this scoping review is to synthesize the current evidence on the risk and protective factors associated with mental health in children with brachial plexus birth injury (BPBI) and associated interventions. MEDLINE, EMBASE, and Cochrane databases were searched for reports on mental health in children with BPBI between 10 and 18 years. Risk and protective factors were charted using the VicHealth review and the Person–Environment–Occupation model. Of 732 records found, 133 full text reports were reviewed and 16 reports were included. Multiple mental health risks associated with BPBI were identified, while protective factors were largely unexplored. Person-related risks were most common including negative coping strategies (n = 8, 50%) and pain (n = 6, 38%). Most frequently reported environment and occupation risk factors were social difficulties (n = 9, 56%) and challenges with upper limb function and daily activities (n = 6, 38%). Good self-determination and/or self-concept (n = 5, 30%) was the most common protective factor. Research using a strengths-based approach is needed to elucidate protective factors and further understanding of the intersection of person and socio-cultural risk factors of mental health in children with BPBI. Evidence on mental health in children with brachial plexus birth injury largely comes from studies of quality of life and functional-status outcomes, while direct reports of mental health outcome in these children are lacking.Mental health risk factors in children with brachial plexus birth injury are largely understood by clinicians and researchers as person-related factors, while the multidimensional nature of these risks is relatively unexplored.Further investigation of mental health protective factors, such as resiliency and self-determination, will foster a strengths-based approach to rehabilitation in children with brachial plexus birth injury. Evidence on mental health in children with brachial plexus birth injury largely comes from studies of quality of life and functional-status outcomes, while direct reports of mental health outcome in these children are lacking. Mental health risk factors in children with brachial plexus birth injury are largely understood by clinicians and researchers as person-related factors, while the multidimensional nature of these risks is relatively unexplored. Further investigation of mental health protective factors, such as resiliency and self-determination, will foster a strengths-based approach to rehabilitation in children with brachial plexus birth injury.

IntroductionPatient-reported outcome measures (PROMs) provide an opportunity for meaningful patient engagement and shared decision-making. The objective of this research programme is to improve health outcomes for paediatric solid organ transplant patients by implementing PROMs into clinical care. The current study aims to create Voxe, a paediatric user-centred electronic PROM platform, by engaging patients and healthcare providers throughout the design and development process.Methods and analysisThe creation of Voxe will occur over two phases that build on previous research. The user interface design phase employs a ‘user-centric’ approach to identify end-users’ needs and iteratively refine the look and layout of Voxe to meet these needs. Transplant recipients, aged 10–17, and healthcare providers will participate in three rounds of testing (24 participants total). Participants will: (1) complete task-based activities (outcomes—effectiveness and efficiency), (2) complete questionnaires (outcome—satisfaction) and (3) participate in a semi-structured interview. The following phase involves software development and Voxe usability testing. Transplant recipients, aged 8–17, and healthcare providers will participate in four rounds of iterative testing (24–40 participants total). The think-aloud technique will be employed, and participants will describe their thoughts and feelings while interacting with a Voxe prototype. Participants will: (1) log into Voxe and complete tasks (outcomes—time on task, successful task completion, frequency of critical and non-critical errors and error-free rate), (2) complete questionnaires (outcome—satisfaction) and (3) participate in a semi-structured interview. Findings will result in the creation and launch of a user-centred electronic PROM platform.Ethics and disseminationResearch ethics board approval has been provided by The Hospital for Sick Children. This research is critical to answering methodological and operational questions to inform Voxe implementation in paediatric clinical settings and facilitate PROM data collection. Future investigations will include an implementation-effectiveness evaluation.

Intensive care physicians play an important role in the identification and referral of potential organ donors in Canada. Nevertheless, little is known about intensivists’ attitudes or behaviours in situations where families override previously expressed consent to donate; nor why physicians elect not to refer patients who are potential donors to provincial organ donation organizations (physician non-referral). We integrated questions regarding family override and physician non-referral into an online, self-administered survey of Canadian intensivists. We report results descriptively. Fifty percent of targeted respondents (n = 550) participated. Fifty-five percent reported having witnessed family override situations and 44% reported having personally not referred patients who were potential donors. Fifty-six percent of respondents stated they would not pursue donation in the face of family override; 2% stated they would continue with the donation process. Fear of loss of trust in the donation system (81%) and obligation to respect the grief and desires of surrogate decision makers (71%) were frequently reported reasons to respect family override requests. Respondents who chose not to refer patients often did so based on organ dysfunction they assumed would preclude donation (59%), or a perception that the family was too distressed to consider donation (42%). No respondents reported that personally held beliefs against organ donation influenced their decision. Physicians caring for patients who are potential organ donors commonly encounter both family override and physician non-referral situations. Knowledge translation of optimal practices in identification and referral could help ensure that physician practices align with legal requirements and practice recommendations.

This qualitative study explored the experiences of social workers, nurses, and physicians providing end-of-life care to children in a pediatric acute-care hospital setting. Findings demonstrated that participants experienced both professional and personal impacts of their work and employed various coping strategies under each of these domains. The acute-care setting was found to create unique challenges in providing end-of-life care. Implications for policy and practice include promotion of both individual and institutional-level coping strategies and supports that meet the various needs of staff. Implications for future research include a nuanced examination of differences in experiences among nurses, social workers, and physicians.

Trust in the deceased organ donation process relies on the expectation that the diagnosis of death by neurologic criteria (DNC) is accurate and reliable. The objective of this study was to assess the perceptions and approaches to DNC diagnosis among Canadian intensivists.We conducted a self-administered, online, cross-sectional survey of Canadian intensivists. Our sampling frame included all intensivists practicing in Canadian institutions. Results are reported using descriptive statistics.Among 550 identified intensivists, 249 (45%) completed the survey. Respondents indicated they would be comfortable diagnosing DNC based on clinical criteria alone in cases where there is movement in response to stimulation (119/248; 48%); inability to evaluate upper/lower extremity responses (84/249; 34%); spontaneous peripheral movement (76/249; 31%); inability to evaluate both oculocephalic and oculo-caloric reflexes (40/249; 16%); presence of high cervical spinal cord injury (40/249; 16%); and within 24 hr of hypoxemic-ischemic brain injury (38/247; 15%). Most respondents agreed that an ancillary test should always be conducted when a complete clinical evaluation is impossible (225/241; 93%); when there is possibility of a residual sedative effect (216/242; 89%); when the mechanism for brain injury is unclear (172/241; 71%); and if isolated brainstem injury is suspected (142/242; 59%). Sixty-six percent (158/241) believed that ancillary tests are sensitive and 55% (132/241) that they are specific for DNC. Respondents considered the following ancillary tests useful for DNC: four-vessel conventional angiography (211/241; 88%), nuclear imaging (179/240; 75%), computed tomography (CT) angiography (156/240; 65%), and CT perfusion (134/240; 56%).There is variability in perceptions and approaches to DNC diagnosis among Canadian intensivists, and some practices are inconsistent with national recommendations.RéSUMé: OBJECTIF: La confiance dans le processus de don d’organes de donneurs décédés repose sur l’attente que le diagnostic de décès déterminé par des critères neurologiques (DDN) soit précis et fiable. L’objectif de cette étude était d’évaluer les perceptions et les approches du diagnostic de DDN chez les intensivistes canadiens. MéTHODE: Nous avons mené un sondage transversal auto-administré et en ligne auprès des intensivistes canadiens. Notre base d’échantillonnage comprenait tous les intensivistes exerçant dans des établissements canadiens. Les résultats sont présentés à l’aide de statistiques descriptives. RéSULTATS: Parmi les 550 intensivistes identifiés, 249 (45 %) ont répondu au sondage. Les répondants ont indiqué qu’ils seraient à l’aise de diagnostiquer un DDN en fonction de critères cliniques seulement dans les cas où il y a : un mouvement en réponse à une stimulation (119/248; 48 %); une incapacité à évaluer les réponses des membres supérieurs et inférieurs (84/249; 34 %); un mouvement périphérique spontané (76/249; 31 %); une incapacité à évaluer à la fois les réflexes oculo-céphaliques et vestibulo-oculaires (40/249; 16 %); la présence de lésions médullaires cervicales hautes (40/249; 16 %); et dans les 24 heures suivant une lésion cérébrale hypoxémique-ischémique (38/247; 15 %). La plupart des répondants étaient d’accord pour dire qu’un test auxiliaire devrait toujours être réalisé lorsqu’une évaluation clinique complète est impossible (225/241; 93 %); lorsqu’il y a possibilité d’un effet sédatif résiduel (216/242; 89 %); lorsque le mécanisme de la lésion cérébrale n’est pas clair (172/241; 71 %); et si une lésion isolée du tronc cérébral est suspectée (142/242; 59 %). Soixante-six pour cent (158/241) des répondants étaient d’avis que les tests auxiliaires étaient sensibles et 55 % (132/241) qu’ils étaient spécifiques pour le DDN. Les répondants ont jugé utiles les tests auxiliaires suivants pour le DDN : l’angiographie conventionnelle des quatre vaisseaux (211/241; 88 %), l’imagerie nucléaire (179/240; 75 %), l’angiographie par tomodensitométrie (TDM) (156/240; 65 %) et la perfusion en TDM (134/240; 56 %). CONCLUSION: Les perceptions et les approches du diagnostic de DDN varient parmi les intensivistes canadiens, et certaines pratiques ne sont pas conformes aux recommandations nationales.

As a result of the COVID-19 pandemic, public health agencies and school boards across Canada enacted new protocols, including face masks, physical distancing and enhanced hygiene, to support the safe reopening of in-person school. This study explored the experiences and perceptions of teachers instructing children and adolescents in person during a two-day school simulation.This study was part of a large school simulation exercise conducted in Toronto, Ontario. Kindergarten to grade 12 teachers taught in classrooms with either masked students, or students who were un-masked or only masked when physical distancing was not possible. A qualitative descriptive phenomenology approach was utilized, and data were collected via virtual focus groups. Qualitative data analysis involved multiple rounds of inductive coding to generate themes.The sample included 14 teachers (92.9% female; 85.7% White), with a median of 9.5 years teaching experience. Three primary themes emerged: 1)As schools transition to in-person instruction, teachers will be required to play dual roles in education and public health, with implications on safety, teaching and professional identity. Public health agencies and school boards are encouraged to engage teachers in ongoing conversations regarding in-person school planning and operations. Furthermore, evidence-based interventions, including increased teaching development programs, are recommended to support teachers during the COVID-19 pandemic.Conséquemment à la pandémie de la COVID-19, les organismes de santé publique et les conseils scolaires de tout le Canada ont mis en œuvre de nouveaux protocoles, notamment des masques, une distanciation physique et une hygiène accrue, afin de soutenir la réouverture prudente de l’école en personne. La présente étude a exploré les expériences et les perceptions des professeurs instruisant les enfants et les adolescents en personne durant une simulation scolaire de deux jours.La présente étude faisait partie d’un grand exercice de simulation scolaire mené à Toronto, Ontario. Les professeurs de la maternelle à la 12L’échantillon comportait 14 professeurs (92,9 % de sexe féminin; 85,7 % Blancs), avec une moyenne de 9,5 années d’expérience d’enseignement. Trois principaux thèmes ont émergé : 1)Tandis que les écoles font la transition à l’enseignement en personne, les professeurs devront assumer des doubles rôles en éducation et en santé publique, impliquant la sécurité, l’enseignement et l’identité professionnelle. Les organismes de santé publique et les conseils scolaires sont invités à faire participer les professeurs à des conversations actuelles relativement à la planification et aux activités de l’école en personne. En outre, les interventions fondées sur des données probantes, notamment les programmes accrus de développement de l’enseignement, sont recommandées pour soutenir les professeurs durant la pandémie de la COVID-19.

Purpose Patient-reported outcome measures (PROMs) are standardized instruments used to collect data about the subjective assessment of medical care from the patient perspective. Implementing PROMs within pediatric clinical settings has gained increasing importance as health services prioritize patient-centred pediatric care. This study explores the perspectives of pediatric solid organ transplant patients, caregivers, and healthcare practitioners (HCPs) on implementing PROMs into clinical practice. Methods Qualitative description methods were used to elicit stakeholder perspectives. Semi-structured interviews were conducted across five Canadian transplant centres. Purposive sampling was used to obtain maximum variation across age, gender, and transplant program for all participants, as well as discipline for HCPs. Results The study included a total of 63 participants [patients (n = 20), caregivers (n = 22) and HCPs (n = 21)]. Nearly all participants endorsed the implementation of PROMs to enhance pediatric transplant clinical care. Three primary roles for PROMs emerged: (1) to bring a transplant patient’s overall well-being into the clinical care conversation; (2) to improve patient communication and engagement; and, (3) to inform the practice of clinical pediatric transplant care. Insights for effective implementation included completing electronic PROMs remotely and prior to clinical appointments by patients who are eight to 10 years of age or older. Conclusions This study contributes to current research that supports the use of PROMs in clinical pediatric care and guides their effective implementation into practice. Future directions include the development, usability testing, and evaluation of a proposed electronic PROM platform that will inform future research initiatives.

Purpose To understand the effectiveness of a nurse-led transition intervention by analyzing qualitative data generated in the context of a clinical trial. Design & methods Qualitative study of a two-session transition intervention conducted by registered nurses at two sites. Adolescents aged 16–17 years with moderate or complex congenital heart disease (CHD) had been randomized to a two-session transition intervention or usual care. Session 1 emphasized patient education including creation of a health passport and goal setting. Session 2, two months later, emphasized self-management. Qualitative data extracted from intervention logs, field notes and audio recordings of the sessions were analyzed for content and themes. Results Data from 111 transition intervention sessions with 57 adolescents were analyzed. Creating a health passport, goal setting, and role-plays were the elements of the intervention most valued by participants. A typology of transition readiness was identified: 1) the independent adolescent (5%), already managing their own care; 2) the ready adolescent who was prepared for transition after completing the intervention (46%); 3) the follow-up needed adolescent who was still in need of extra coaching (26%), and 4) the at-risk adolescent who warranted immediate follow-up (14%). Baseline knowledge and transition surveys scores validated the typology. Conclusions A two-session nursing intervention met the transition needs of approximately half of adolescents with CHD. However, additional transition-focused care was needed by 40% of participants (groups 3 and 4). Practice implications These findings will guide pediatric nurses and other healthcare professionals to optimize an individualized approach for ensuring transition readiness for adolescents with CHD.

Introduction: Physical activity is vital to long-term cardiovascular health. However, patients with hypertrophic cardiomyopathy (HCM) are often advised to avoid strenuous physical activity due to the risk of sudden cardiac death. Objective: Given activity restrictions and recommendations for patients with HCM, our objective was to explore children and parents’ perceptions of a heart healthy lifestyle. Methods: Children with HCM and their parents were purposefully recruited at two Canadian sites for participation in a photovoice project. Participants (children and parents) were given a camera and asked to take pictures of everyday heart healthy or unhealthy choices. Photos were discussed during one-on-one qualitative interviews with children and parents separately to understand the photos meaning and significance. Inductive descriptive thematic analysis was used. Results: Thirteen child/parent pairs participated. Children (median 15.9 yrs old (range: 13.6-17.7), median BMI 28.5kg/m 2 (range: 17.8-36.7)) were mostly male (62%). Parents were all female. Most children were activity restricted (n=12). Participants took photos to represent being physically active, the majority being non-competitive activities. Specifically, they emphasized the importance of regular activity to support physical, emotional and heart health. While physical activity was identified as a healthy choice, participants learned from the cardiologist that certain activities were too risky to participate in. Despite these restrictions, children engaged in other types of activity and were supported by their parents and cardiologist. Two categories (self-limiting and finding the right sport) explained strategies children used to engage in physical activity in heart healthy ways. One child stated, “I think it got easier [over the years] because now I know my limits, and I know what I can and can’t do”. Conclusions: Children with HCM and their parents want to be physically active and sought guidance from the cardiologist. These data demonstrated how children with HCM used self-awareness to make heart healthy decisions about physical activity. This study supports the need for patient-centered, individualized physical activity counselling for patients with HCM.

Objective Self-management for patients who have undergone solid organ transplantation is demanding and a challenge for adolescents transitioning into adult-oriented healthcare systems. This study explores whether adolescent and young adult solid organ transplant patients support the use of online peer support programs that encourage peer mentorship as an approach to improve disease self-management. Methods A qualitative descriptive design comprised of semi-structured interviews with adolescent and young adult transplant patients. Individual interviews were audio-recorded, transcribed verbatim, and subject to content analysis. Emergent categories and themes were refined through member checking and team consensus following saturation. Results Interviews were conducted across organ groups with 15 participants (60% female) ages 14 to 22 years. Participants expressed unanimous support for an online peer support mentorship program to aid disease self-management in the pediatric transplant patient population. Three themes emerged from the interviews: (a) self-management care can be "taxing"; (b) there would be value in peer mentorship for adolescent transplant patients; and (c) online peer mentorship is the "best" option but still requires relationship building. Logistical preferences of an online peer mentorship program were solicited. The preferred peer "match" was someone of the same organ transplant group and gender who was able to have weekly contact via texting. Conclusions Creating tailored, online peer mentorship programs is gaining evidence to justify further development. Findings from this study will support program modifications for adolescent and young adult solid organ transplant patients. Next steps will involve usability and feasibility testing of an adapted online program for this patient group.

We surveyed Canadian critical care physicians who may care for patients who are potential organ donors to understand their attitudes and knowledge of legislation governing the deceased organ donation system.We used a web-based, self-administered survey that included questions related to opt-out consent and mandatory referral legislation. Potential participants were identified through membership lists of professional societies and manual searches. We designed our survey using standardized methods and administered it in February and March 2018.Fifty percent (263/529) of potential participants completed the questionnaire. A majority (61%; 144/235) supported a change towards an opt-out consent model, and 77% (181/235) stated they believe it would increase donation rates. Asked if opt-out consent would change their practices, 71% (166/235) stated an opt-out model would not change how or if they approach families to discuss donation. Fifty-six percent (139/249) supported mandatory referral laws, while only 42% (93/219) of those working in provinces with mandatory referral correctly stated that such laws exist in their province. Respondents gave variable responses on who should be accountable when patients are not referred, and 16% (40/249) believed no one should be held accountable.While a majority of critical care physicians supported opt-out consent and mandatory referral, many were neutral or against it. Many were unaware of existing laws and had variable opinions on how to ensure accountability. Efforts to increase understanding of how legislative models influence practice are required for any law to achieve its desired effect.RéSUMé: OBJECTIF: Nous avons étudié les intensivistes canadiens qui prennent soin de patients potentiellement donneurs d’organes afin de comprendre leurs attitudes et connaissances quant aux lois régissant le système de don d’organes de donneurs décédés. MéTHODE: Nous avons utilisé un sondage électronique auto-administré incluant des questions liées au consentement implicite avec option de retrait et à la législation de référence obligatoire. Les participants potentiels ont été identifiés grâce aux listes des sociétés professionnelles et par des recherches manuelles. Nous avons conçu notre sondage à l’aide de méthodes standardisées et l’avons administré en février et mars 2018. RéSULTATS: Cinquante pour cent (263/529) des participants potentiels ont complété le questionnaire. La majorité (61 %; 144/235) était en faveur d’un changement vers un modèle de consentement avec option de retrait, et 77 % (181/235) ont déclaré penser que cela augmenterait les taux de don. Lorsqu’il leur a été demandé si l’option de consentement avec option de retrait modifierait leur pratique, 71 % (166/235) ont affirmé qu’un modèle avec possibilité de retrait ne modifierait pas leur façon ou leur intention d’approcher les familles pour parler de don d’organes. Cinquante-six pour cent (139/249) étaient en faveur de lois concernant la référence obligatoire, alors que seulement 42 % (93/219) des intensivistes travaillant dans des provinces où la référence était obligatoire ont correctement déclaré que de telles lois existaient dans leur province. Les répondants ont donné des réponses variables quant à l’imputabilité lors de la non-référence des patient, et 16 % (40/249) étaient d’avis que personne ne devrait être tenu responsable. CONCLUSION: Alors que la majorité des intensivistes était en faveur du consentement avec option de retrait et de la référence obligatoire, bon nombre n’avaient pas d’avis sur la question ou étaient contre. De nombreux intensivistes ne connaissaient pas bien les lois existantes et avaient des opinions variables sur la façon de garantir l’imputabilité. Des efforts sont nécessaires pour augmenter la compréhension de la manière dont les modèles législatifs influencent la pratique afin qu’une loi, quelle qu’elle soit, ait l’effet désiré.

Purpose Compared to other solid organs, survival after lung transplantation (LTx) is still poor. Discussions on survival benefits following LTx in children, however, have largely concentrated on medical outcome data. Little research describes quality of life (QoL) of pediatric LTx recipients, which is partly due to the small number of pediatric LTxs performed. Only two centers worldwide performed >10 pediatric LTxs in 2013, making data on QoL in this population difficult to obtain. The primary objective was to examine the impact of LTx on QoL of pediatric recipients. Methods LTx recipients aged 8-17 years and their parents were recruited from a Canadian pediatric transplant centre. Participants completed the PedsQL 4.0 Generic Core Scales, a validated health-related QoL patient-reported outcome measure for children and adolescents, pre-transplant and two times post-transplant. Pre-LTx QoL scores were compared with initial assessment scores post-LTx and changes in QoL over time were described. Correlations between self- and proxy-reports were also discussed. Results Ten pediatric LTx recipients (six male, mean age = 13.3 years) and their parents were enrolled. Assessments were completed pre-LTx (mean months = 4.8) and two times post-LTx (mean months 8.7 and 24.6, respectively). Pre- and post-transplant total scores differed significantly for both self- and proxy-report, which remained consistent at a second assessment post-transplant (P = 0.018 and 0.028, respectively). Conclusions Findings highlight the importance of QoL outcomes when exploring LTx as a treatment option. Future research should explore long-term QoL outcomes post-LTx and examine standardized integration of patient-reported outcomes into clinical practice.

Background Anonymous living donor transplantation is a potential strategy to address the shortage of available organs for transplant. A living anonymous donor (LAD) is a donor with no biological connection and whose identity is unknown to the recipient. This study captured the lived experiences of pediatric liver transplant recipient families whose child received an organ from a LAD. Methods Qualitative data collection and analysis were guided by a theoretical framework of phenomenology. Data analysis highlighted themes through an inductive process of reviewing transcript paragraphs to code for significant statements that represented key concepts and captured depth of experience. Results A total of nine interviews were conducted with 10 participants. Data analysis yielded themes of emotional turbulence through their transplant journey. Pre-transplant experiences were characterized by feelings of helplessness and desperation. Receiving a LAD transplant prompted shock, relief, and acceptance of the donation. Post-transplant experiences were characterized by altered life-perspectives and varied levels of connectedness to the donor, marked by gratitude and concern for donor well-being. Conclusion Anonymous donation in liver transplantation is perceived by recipient families as a remarkable gift and a viable donor option. Our preliminary findings can be used to inform strategy development regarding future delivery of care.

Subjective evaluation of medical care and disease outcomes from patients' perspectives has become increasingly important. Patient-reported outcome measures (PROMs) play a prominent role in engaging patients, capturing their experiences and improving patient care. This systematic review sought to identify PROMs that are used in the field of pediatric solid organ transplantation, with the aim to inform the implementation of PROMs into clinical practice for this population. A systematic review of English language, peer-reviewed articles was performed on key health science databases to identify publications using PROMs in pediatric solid organ transplantation. The search yielded 3670 articles, with a final data set of 62 articles that included 47 different PROMs. The three most frequently used PROMs included the following: (a) PedsQL™ Generic Core Scales (n = 25); (b) Children's Depression Inventory (n = 6); and (c) Child Health Questionnaire (n = 6). Of the 47 PROMs, 42 were generic and five were disease-specific; only six PROMS had a documented psychometric evaluation within a pediatric solid organ transplant population. This review outlines the attributes of the instruments (eg, domains captured), as well as the psychometric properties of those evaluated. PROMs are increasingly used in the field of pediatric transplantation; however, there are limited details in the current literature about their conceptual underpinnings and psychometric properties. This review highlights the need for additional psychometric evaluation of identified measures to establish the necessary foundation to inform the implementation of PROMs into clinical care for pediatric solid organ transplant patients.

Numerous social, economic and academic pressures can have a negative impact on representations of biomedical research. We review several of the forces playing an increasingly pernicious role in how health and science information is interpreted, shared and used, drawing discussions towards the role of narrative. In turn, we explore how aspects of narrative are used in different social contexts and communication environments, and present creative responses that may help counter the negative trends. As traditional methods of communication have in many ways failed the public, changes in approach are required, including the creative use of narratives., De nombreuses pressions sociales, économiques et académiques peuvent avoir un impact négatif sur les représentations de la recherche biomédicale. Nous passons en revue plusieurs des éléments qui jouent un rôle de plus en plus pernicieux dans l’interprétation, le partage et l’utilisation de l’information sur la santé et les sciences; ce qui nous mène à nous intéresser au rôle du récit. Par conséquent, nous explorons comment les aspects narratifs sont utilisés dans divers contextes sociaux et environnements de communication, puis présentons des réponses novatrices susceptibles de contribuer à contrer les tendances négatives. Comme les méthodes de communication traditionnelles ont échoué à bien des égards auprès du public, des changements d’approche s’imposent, dont l’utilisation novatrice des récits.

Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns.

The assessment of quality of life (QOL) is key within pediatric oncology and requires a clearly defined construct of QOL. The purpose of our study was: (1) to conduct a qualitative study to inform the theoretical underpinnings of QOL and (2) to determine the appropriateness of patient-reported outcome (PRO) instruments to assess and evaluate QOL in pediatric cancer patients and survivors. The study used an interpretative description approach. Children diagnosed with childhood cancer, aged 8–18 years, were recruited from four Canadian hospitals. Semi‐structured interviews were completed, transcribed verbatim and coded through methods of constant comparison. In-depth analysis facilitated a comparison between emerging themes and the content of commonly used PRO instruments. Thirty-seven children (19 females; 51 %) participated. The mean age was 13 years, and 19 (51 %) participants were post-treatment. Participant experiences reflected notions of positive and negative duality, including: maintaining physical functioning but longing for the ability to participate in activities; experiencing a new level of intimacy with family and friends amidst isolation; and developing positivity amidst anger, sadness and lingering worry. Analysis showed that existing PRO instruments are missing concerns specific to this population and contain content not reflective of the QOL experiences of childhood cancer patients and survivors. Our research highlights important problems with content validity of existing PRO scales, indicating that the tools we have to date have limited utility in research and clinical practice. The development of a new PRO instrument should be considered to ensure that content validity is achieved.

Background Adolescents who have undergone SOT are at heightened risk for graft failure. This pilot randomized controlled trial aimed to determine the feasibility and obtain preliminary estimates of efficacy of the online TTC program. Methods TTC is a web-based self-management program for adolescent SOT patients. Participants-kidney or liver transplant candidates or recipients-were enrolled over a 2-year period and randomized to either an intervention group that accessed TTC or a control group that did not access the program. Outcome measures included feasibility, how much the program was utilized, and pre- and post-intervention health-related outcomes evaluating self-management, self-efficacy, mood, use of healthcare services, and knowledge. Semi-structured interviews were conducted with participants post-intervention. Results Forty-two participants were enrolled in the study. Participants in the intervention group expressed that they enjoyed learning about other teens' experiences, but reported barriers to accessing the site, such as being too busy, computer being too slow, and not being able to access the site on their mobile device. Time spent using the website was low for the majority of participants. Patients less than 1-year post-transplant accessed TTC more than patients who had their transplant for longer. No significant differences were found for health-related outcomes between groups. Conclusions No differences in health-related outcomes were found between groups. Further studies that examine barriers to engagement with web-based education tools are warranted.

Objective There is a growing need to assess the long-term quality of life (QOL) of pediatric oncology patients since many children now survive their disease. This paper highlights the subjective perspectives of pediatric cancer patients and specifically explores how experiencing cancer at a young age impacts adolescents in the areas of social functioning, peer relationships, and QOL. The findings emerged from a qualitative research study that explored how pediatric oncology patients ascribe meaning to their illness. Methods Study participants were recruited from four Canadian academic pediatric hospitals. In this study, we used an interpretative description approach. Semistructured interviews were completed, transcribed verbatim, and coded through the method of constant comparison. Results A total of 37 children and adolescents (n = 19 female; 51%) participated. The majority of participants were diagnosed with leukemia (n = 16; 43%) or lymphoma (n = 9; 24%). Sixty-two percent of participants were adolescents between the ages of 13 and 18 years (n = 23). Data illustrated a unique adolescent experience, which has been reported as a subset of the original population. Adolescent participants noted an accelerated experience of maturation, which invited reflections of gratitude as well as feelings of isolation and disconnect from peers. Participants were saddened to have "missed out" on normative parts of childhood. Conclusion Findings highlighted experiences of accelerated maturity that prompted adverse social outcomes for adolescent participants, which impacted their QOL. Future research is needed to explore the intersection of accelerated maturity attributed to illness, social functioning, and QOL. Peer support through technology engagement is suggested for this population.

Introduction: Evolving methods of communication have increased public appeals for living organ and hematopoietic stem cell donations from strangers, giving public solicitations more visibility. Within the academic literature, perspectives have been divisive, reflecting ethical justifications for and against appeals for living unrelated donors. Transplant programs and clinicians face a variety of ethical dilemmas when patients and their solicited donors present to the hospital. Objective: A scoping review methodology was designed to (1) explore the academic literature and (2) summarize and disseminate key research findings. Methods: We used the Arksey & O’Malley framework for conducting and reporting scoping reviews and to review the prominent ethical arguments, counterarguments, and policy implications in the literature. From 4616 articles identified through MEDLINE, EMBASE, PsycInfo, and CINAHL, we screened titles and abstracts to assess eligibility for full-text review. Results: We retrieved 280 full texts, extracted data from 61, and coded and analyzed 41 papers. Of these, 36 were from or based in the US context. Two articles originated from Canada. Three articles addressed public solicitations of hematopoietic stem cell donation. We mapped themes under 3 major headings related to public solicitations of living unrelated donors for organs and hematopoietic stem cells: (1) interpretations and modes, (2) ethical arguments for and against, and (3) policy implications and suggestions to address challenges for clinical practice. Discussion: The academic literature contains divisive perspectives of public solicitations for organ and hematopoietic stem cell donation, each of which deserves further reflection for implications for policy and practice.

In recent years, the importance of involving patients in research has been increasingly recognized because it increases the relevance and quality of research, facilitates recruitment, enhances public trust and allows for more effective dissemination of results. The Canadian National Transplant Research Program (CNTRP) is an interdisciplinary research team looking at a variety of issues related to organ and tissue donation and transplantation. The aim of this study was to gather the perspectives of CNTRP researchers on engaging patients in research. We conducted interviews with 10 researchers who attended a national workshop on priority-setting in organ donation and transplant research. The researchers viewed patient engagement in research as necessary and important. They also considered that patients could be engaged at every step of the research process. Participants in this study identified scientific language, time, money, power imbalance, patient selection and risk of tokenism as potential barriers to patient engagement in research. Training, adequate resources and support from the institution were identified as facilitators of patient engagement. This study showed a positive attitude among researchers in the field of organ donation and transplantation. Further studies are needed to study the implementation and impact of patient engagement in research within the CNTRP. Background Involving patients in research has been acknowledged as a way to enhance the quality, relevance and transparency of medical research. No previous studies have looked at researchers’ perspectives on patient engagement (PE) in organ donation and transplant research in Canada. Objective The aim of this study was to gather the perspectives of Canadian National Transplant Research Program (CNTRP) researchers on PE in research. Methods We conducted semi-structured interviews with ten researchers who attended a national workshop on priority-setting in organ donation and transplant research. The interviews were digitally recorded and transcribed verbatim, and the transcripts were subjected to qualitative thematic and content analyses. Results The researchers viewed PE in research as necessary and important. PE was a method to incorporate the voice of the patient. They also considered that patients could be engaged at every step of the research process. The following were identified as the main barriers to PE in research: (i) scientific jargon; (ii) resources (time and money); (iii) tokenism; (iv) power imbalance; and (v) patient selection. Facilitating factors included (i) training for patients and researchers, (ii) adequate resources and (iii) institutional support. Conclusion This study revealed a favourable attitude and willingness among CNTRP researchers to engage and partner with patients in research. Further studies are needed to assess the implementation of PE strategy within the CNTRP and its impact.

In adult heart transplant recipients, a transformation of the self has been observed simultaneous to the "emotional integration" of the heart following transplantation. However, the experiences of adolescents following heart transplantation are virtually unexplored within the current literature. Our qualitative findings address this gap and explore struggles with personal identity in adolescent heart transplant recipients. Twenty-seven heart transplant patients (67% female, age range: 12 to 18 years) from a large teaching hospital participated in 1-on-1 interviews, which were transcribed verbatim and coded, using methods of constant comparison within a grounded- theory approach. Emergent themes were identified and refined through team consensus. Many participants identified emotional and psychological concerns regarding accepting foreign hearts as their own. This manifested in a range of experiences such as sadness or guilt regarding the death of the donor. Adolescent participants also pondered the potential acquisition of personal qualities or characteristics of the donor. Many participants speculated extensively about the donor and "longed for" donor information. Findings point to the meaning-making processes that adolescent heart transplant patients endure as they grapple with the presence of a foreign, life-giving organ within their bodies and the potential impact on their psychosocial well-being. This paper encourages health care professionals to initiate discussions before and following transplantation that address adolescents' concept of self and offers recommendations for clinical care.

There is little evidence regarding the efficacy of interventions to prepare adolescents with congenital heart disease (CHD) to enter adult care.The goal of this study was to evaluate the impact of a nurse-led transition intervention on lapses between pediatric and adult care.A cluster randomized clinical trial was conducted of a nurse-led transition intervention for 16- to 17-year-olds with moderate or complex CHD versus usual care. The intervention group received two 1-h individualized sessions targeting CHD education and self-management skills. The primary outcome was excess time to adult CHD care, defined as the interval between the final pediatric and first adult cardiology appointments, minus the recommended time interval, analyzed by using Cox proportional hazards regression accounting for clustering. Secondary outcomes included scores on the MyHeart CHD knowledge survey and the Transition Readiness Assessment Questionnaire.A total of 121 participants were randomized to receive the intervention (n = 58) or usual care (n = 63). At the recommended time of first adult appointment (excess time = 0), intervention participants were 1.8 times more likely to have their appointment within 1 month (95% confidence interval: 1.1 to 2.9; Cox regression, p = 0.018). This hazard increased with time; at an excess time of 6 months, intervention participants were 3.0 times more likely to have an appointment within 1 month (95% confidence interval: 1.1 to 8.3). The intervention group had higher scores at 1, 6, 12, and 18 months on the MyHeart knowledge survey (mixed models, p 0.001) and the Transition Readiness Assessment Questionnaire self-management index (mixed models, p = 0.032).A nurse-led intervention reduced the likelihood of a delay in adult CHD care and improved CHD knowledge and self-management skills. (Congenital Heart Adolescents Participating in Transition Evaluation Research [CHAPTER 2]; NCT01723332).

Background Because organ transplantation relies on public support for donation, an analysis of public discourse around organ donation is essential. We investigated the portrayal of family veto - when a family overrides the deceased person's prior legally executed wishes to donate - in Canadian news media. Methods Using the Canadian Newsstream database, we identified articles published in English-language newspapers addressing family veto between 2000 and 2016. Guided by the theoretical perspectives of framing of media effects, we conducted a systematic content analysis of the articles to examine how the Canadian media framed family veto. An initial in-depth analysis of the data set in which themes and patterns were captured and recorded identified coding categories, including primary framing of family veto, prevalence, reasons, ethical or legal concerns and overall tone of the article. Two coders analyzed the data set to ensure intercoder reliability. Results A total of 133 relevant articles were identified. Family veto was framed predominantly as something that should not be allowed (81 articles [60.9%]) and as a reality that is little understood outside the transplantation community (45 [33.8%]). One-quarter of the articles (32 [24.1%]) highlighted ethical principles of autonomy and justice associated with family veto. Family veto was represented as a stumbling block in the present organ donation system, with most publications (107 [80.4%]) calling for change. There were differing interpretations of organ donation legislation, with 82 articles (61.6%) erroneously stating or suggesting that existing legislation permits family veto. Interpretation Family veto in organ donation was portrayed predominantly negatively. Many publications reflected a misunderstanding of the law concerning this issue. Although the framing of family veto highlighted important ethical and legal concerns as well as practice and policy considerations, research is needed to enhance the understanding of family veto in organ donation.

Objective:Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.Method:This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.Results:Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.Significance of results:A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.

Background It is vitally important to seek input from key stakeholders to increase the quality and relevance of health-related research and accelerate its adoption into practice. Patients and caregivers have rarely been involved in setting research priorities in the transplantation and donation field. The objectives of this explorative study are: (i) to discuss research priorities within the Canadian National Transplant Research Program during a priority-setting exercise with patients, caregivers, organ donors and researchers and (ii) to compare the identified priorities with research published in 2 prestigious transplantation journals. Methods A pilot workshop attended by 10 patients and caregivers and 5 researchers was held in Montréal (Quebec, Canada) in August 2014 to identify research priorities. Priorities were identified using a thematic analysis of the workshop transcription conducted by multiple coders. These priorities were compared with the topics of research articles published in 2 major transplantation journals between 2012 and 2014. Results The themes of the 10 research priorities identified by study participants were related to different research domains: social, cultural, and environmental health factors (4); biomedical or clinical (4); and research about health systems and services (2). 26.7% of the research articles published were related to the identified priorities. Thirteen percent looked at ways to improve graft survival and 8.5% looked at the development of tolerance, 2 priorities identified by participants. Fewer than 5% examined the other 8 research priorities identified as important by workshop participants. Conclusions This is the first study reporting patients' and researchers' priorities in the field of transplantation and donation in Canada. There is a discrepancy between topics that key stakeholders find important and research published in 2 major transplantation journals. The research priorities identified during our initial workshop will be validated through a national survey and workshop.

The waiting period for an organ transplant has been described as a time of tremendous uncertainty and vulnerability, posing unique challenges and stressors for pediatric transplant candidates and their families. It has been identified as the most stressful stage of the transplant journey, yet little attention has been given to the physical, psychological, or social impact of the waiting period in the literature. In this review, we discuss the physical, nutritional, and psychosocial implications of the waiting period for child and adolescent transplant candidates and the impact on their parents and siblings. We identify areas for future research and provide recommendations for clinical practice to support children, adolescents, and families during the waiting period.

Objectives An appraisal of pediatric cancer-specific quality-of-life (QOL) instruments revealed a lack of clarity about what constitutes QOL in this population. This study addresses this concern by identifying the concepts that underpin the construct of QOL as determined by a content analysis of all patient-reported outcome (PRO) instruments used in childhood cancer research. Methods A systematic review was performed of key databases (i.e., MEDLINE, CINAHL, PsychINFO) to identify studies of QOL in children with cancer. A content analysis process was used to code and categorize all items from generic and cancer-specified PRO instruments. Our objective was to provide clarification regarding the conceptual underpinnings of these instruments, as well as to help inform the development of theory and contribute to building a conceptual framework of QOL for children with cancer. Results A total of 6,013 English language articles were screened, identifying 148 studies. Ten generic and ten cancer-specific PRO instruments provided 957 items. Content analysis led to the identification of four major domains of QOL (physical, psychological, social, and general health), with 11 subdomains covering 98 different concepts. While all instruments reflected items relating to the broader domains of QOL, there was substantial heterogeneity in terms of the content and variability in the distribution of items. Conclusions This systematic review and the proposed model represent a useful starting point in the critical appraisal of the conceptual underpinnings of PRO instruments used in pediatric oncology and contribute to the need to place such tools under a critical, yet reflective and analytical lens.

Background The population of adolescents and young adults with congenital heart disease (CHD) is growing exponentially. These survivors are at risk of late cardiac complications and require lifelong cardiology care. However, there is a paucity of data on how to prepare adolescents to assume responsibility for their health and function within the adult health care system. Evidence-based transition strategies are required. Methods The Congenital Heart Adolescents Participating in Transition Evaluation Research (CHAPTER 2) Study is a two-site cluster randomized clinical trial designed to evaluate the efficacy of a nurse-led transition intervention for 16–17 year olds with moderate or complex CHD. The primary endpoint is excess time to adult CHD care, defined as the time interval between the final pediatric cardiology appointment and the first adult CHD appointment, minus the recommended time interval between these appointments. Secondary endpoints include the MyHeart score (CHD knowledge), Transition Readiness Assessment Questionnaire score, and need for catheter or surgical re-intervention. Participants are enrolled in clusters based on week of attendance in the pediatric cardiology clinic. The intervention consists of two one-hour individualized sessions between a cardiology nurse and study participant. Session One focuses on knowledge of the participant’s CHD, review of their cardiac anatomy and prior interventions, and potential late cardiac complications. Session Two focuses on self-management and communication skills through review and discussion of videos and role-play. The study will recruit 120 participants. Discussion Many adolescents and young adults experience a gap in care predisposing them to late cardiac complications. The CHAPTER 2 Study will investigate the impact of a nurse-led transition intervention among adolescents with CHD. Fidelity of the intervention is a major focus and priority. This study will build on our experience by (i) enrolling at two tertiary care programs, (ii) including a self-management intervention component, and (iii) evaluating the impact of the intervention on time to ACHD care, a clinically relevant outcome. The results of this study will inform pediatric cardiology programs, patients and policy makers in judging whether a structured intervention program provides clinically meaningful outcomes for adolescents and young adults living with CHD. Trial registration ClinicalTrials.gov ID NCT01723332

Background Adolescents with chronic illnesses are at increased risk for body image and eating disorders; however, this has not been investigated in solid organ transplant recipients. Adolescent transplant recipients are a vulnerable cohort because of the sustained follow-up and immune-suppressing therapies, which often include steroids and may lead to weight gain and cosmetic changes. Consequences of body dissatisfaction such as disordered behaviors have not been well studied in transplant recipients. Purpose To examine body image, eating attitudes, and behaviors among 28 adolescent thoracic transplant recipients. Methods Adolescent (11–18 years old) heart and lung transplant recipients a minimum of 3 months after transplant provided informed written consent and completed a standardized questionnaire package about eating attitudes and behaviors; body image and drive for thinness; actual, perceived, and desired weight; and medical and anthropometric information (eg, body mass index) during regular transplant clinics. Results Of 25 heart and 3 lung transplant recipients (54% female; median age, 14.5 years; median, 1.6 years after transplant), 37% perceived their current weight as too high or low. Moreover, 81% were dissatisfied with their current weight (38% wanted to lose and 44% wanted to gain weight), yet few engaged in disordered behaviors. Conclusions Despite high levels of self-reported body dissatisfaction, low rates of disordered behaviors were observed. Weight dissatisfaction was high (81%) but bidirectional (to lose or to gain weight). Future assessment of disordered eating behaviors should include insidious activities such as medication nonadherence, in addition to traditional weight-control behaviors such as binge eating, strict dieting, or assiduous exercise. Further research will delineate the impact of body dissatisfaction and eating behaviors and outcomes on long-term transplant survivors, older adolescent cohorts, and other recipients of solid organ transplants.