Samantha J. Anthony

Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation

Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock‐BarZiv SM. Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation.
Pediatr Transplantation 2010:14:249–256.

Quality of Life After Pediatric Solid Organ Transplantation

Long-term survival after pediatric solid organ transplantation is now the rule rather than the exception for increasing numbers of children with end-stage organ diseases. While transplantation restores organ function it does not necessarily return one to a normal life. Therefore, it is prudent to focus on assessment of not only traditional biologic outcomes but also the quality life for these children and their families. This article gives a brief overview of current definitions, conceptualizations, approaches to measurement of, and unique considerations in the evaluation of quality of life in children who have undergone solid organ transplant. Current understanding of quality of life in children who have undergone solid organ transplantation is reviewed, followed by limitations of current knowledge. Clinical implications are discussed and future research directions suggested.

Waiting for transplant: Physical, psychosocial, and nutritional status considerations for pediatric candidates and implications for care

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.

A cluster randomized trial of a transition intervention for adolescents with congenital heart disease: rationale and design of the CHAPTER 2 study.

BackgroundThe 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.MethodsThe 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.DiscussionMany 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 registrationClinicalTrials.gov ID NCT01723332

Body image and eating attitudes and behaviors among adolescent heart and lung transplant recipients: a brief report.

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.

A struggle to survive: the experience of awaiting pediatric heart transplantation.

Despite the establishment of heart transplantation as a life‐saving therapy for children and adolescents, little research has focused on the biopsychosocial impact of the transplant process. Few studies have captured the subjective experiences of young heart transplant recipients. This study examined the experiences and perspectives of children and adolescents during the pretransplant phase of waiting for a donor organ. Grounded theory methods guided data collection and analysis. A total of 27 adolescents participated in semistructured qualitative interviews. Findings illuminate the waiting period for pediatric heart transplantation to be a pervasive experience, with consequent impact on physical, psychological, and social well‐being. Participants described various biopsychosocial processes and experiences that occurred during this time, with data analysis yielding themes reflecting notions of “struggling to survive,” including physical limitations, lethargy, social isolation, discomfort with physical appearance, and academic issues. This research identifies the pretransplant experience as a period framed within a text of debilitation and negative self‐perceptions related to health and well‐being. Supporting children and their families as they navigate this complex and uncertain journey is merited, and results invite further interventional development and research.

What does patient engagement mean for Canadian National Transplant Research Program Researchers

Plain English summaryIn 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.AbstractBackground 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.

A Scoping Review of the Literature on Public Solicitations for Living Organ and Hematopoietic Stem Cell Donations

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.

Quality of life outcomes following pediatric lung transplantation

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.

Family veto in organ donation in Canada: framing within English-language newspaper articles

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 persons 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.