Exercise training in solid organ transplant candidates and recipients.

PURPOSE OF REVIEW: Exercise training programs are an integral part of the management of solid organ transplantation (SOT) candidates and recipients. Despite this, they are not widely available and specific guidelines on exercise parameters for each type of organ are not currently provided. A review of this topic could help clinicians to prescribe appropriate exercise regimens for their patients. RECENT FINDINGS: In this narrative review, we discuss the physical impairments of SOT candidates and recipients and how these affect their physical function and transplant outcomes. We examine recent systematic reviews, statements, and randomized controlled trials on exercise training in SOT candidates and recipients and present the current available evidence while providing some practical recommendations for clinicians based on the frequency, intensity, time, and type principle. SUMMARY: While randomized controlled trials of better methodology quality are needed to strengthen the evidence for the effects of exercise training and for the optimal training characteristics, the available evidence points to beneficial effects of many different types of exercise. The current evidence can provide some guidance for clinicians on the prescription of exercise training for transplant candidates and recipients.

Implementation and maintenance of an enhanced pulmonary rehabilitation program in a single centre: An implementation study.

BACKGROUND: Pulmonary rehabilitation (PR) has major benefits for patients with chronic obstructive pulmonary disease (COPD). An enhanced PR program was developed with a self-management education intervention. The objective of our study was to evaluate the implementation of the enhanced PR program into a single centre. METHODS: Pre-post implementation study consisted of two evaluation periods: immediately after implementation and 18 months later. Guided by the RE-AIM framework, outcomes included: Reach, Effectiveness, Adoption, Implementation and Maintenance. RESULTS: Reach: 70-75% of referred patients agreed to a PR program (n = 26). Effectiveness: Clinically important improvements occurred in some patients in functional exercise capacity (64% of the patients achieved clinical important difference in 6-min walk test in the first evaluation period and 44% in the second evaluation period), knowledge, functional status, and self-efficacy in both evaluation periods. Adoption: All healthcare professionals (HCPs) involved in PR (n = 8) participated. Implementation: Fidelity for the group education sessions ranged from 76 to 95% (first evaluation) and from 82 to 88% (second evaluation). Maintenance: The program was sustained over 18 months with minor changes. Patients and HCPs were highly satisfied with the program. CONCLUSIONS: The enhanced PR program was accepted by patients and HCPs and was implemented and maintained at a single expert center with good implementation fidelity.

The effects of exercise training in adult solid organ transplant recipients: A systematic review and meta-analysis.

Reduced exercise capacity can predispose solid organ transplant (SOT) recipients to higher risk of diabetes, cardiovascular complications, and mortality and impact their quality of life. This systematic review and meta-analysis investigated the effects of exercise training (versus no training) in adult SOT recipients. We conducted an electronic search of randomized controlled trials reporting on exercise interventions in SOT recipients. Primary outcomes were exercise capacity, quadriceps muscle strength, and health-related quality of life (HRQoL). Twenty-nine articles met the inclusion criteria. In 24 studies, there were either high risk of bias or some concerns about the potential risk of bias. There was an increase in exercise capacity (VO2 peak) (SMD: 0.40; 95%CI 0.22-0.57; P = 0.0) and quadriceps muscle strength (SMD: 0.38; 95%CI 0.16-0.60; P = 0.001) in the exercise vs control groups. There were also improvements in several domains of the SF-36. Diastolic blood pressure improved in the exercise group compared to controls (SMD: -0.22; 95%CI -0.41-0.03; P = 0.02). Despite the considerable variation in exercise training characteristics and high risk of bias in the included studies, exercise training improved maximal exercise capacity, quadriceps muscle strength, HRQoL, and diastolic blood pressure and should be an essential part of the post-transplant care.

Exercise interventions in solid organ transplant candidates: A systematic review.

INTRODUCTION: Exercise training may be recommended to solid organ transplant (SOT) candidates to improve fitness and tolerance before surgery. We aimed to determine the acceptance, safety, and effectiveness of exercise interventions in SOT candidates. METHODS: Online databases were searched. Studies of any design were included. Outcomes of interest were acceptance, safety, exercise capacity, and health-related quality of life. RESULTS: Twenty-three articles were included. Acceptance ranged from 16% to 100%. In the fifteen studies that assessed adverse events, none mentioned any adverse events occurring during the study. Five out of seven studies reported an increase in maximal exercise capacity post-exercise in the intervention group (range of mean change: 0.45 to 2.9 mL/kg). Eight out of fourteen studies reported an increase in 6-minute walking distance in the intervention group after the training period (range of mean change: 40-105 m). Two articles showed an improvement in the mental composite scores as well as in the physical composite scores post-exercise in the intervention group. CONCLUSION: There was a lack of significant findings among most randomized controlled trials. Exercise training is acceptable and safe for selective SOT candidates. The effects of exercise training on exercise capacity and quality of life in SOT candidates are unclear.

A framework for measurement and harmonization of pediatric multiple sclerosis etiologic research studies: The Pediatric MS Tool-Kit.

BACKGROUND: While studying the etiology of multiple sclerosis (MS) in children has several methodological advantages over studying etiology in adults, studies are limited by small sample sizes. OBJECTIVE: Using a rigorous methodological process, we developed the Pediatric MS Tool-Kit, a measurement framework that includes a minimal set of core variables to assess etiological risk factors. METHODS: We solicited input from the International Pediatric MS Study Group to select three risk factors: environmental tobacco smoke (ETS) exposure, sun exposure, and vitamin D intake. To develop the Tool-Kit, we used a Delphi study involving a working group of epidemiologists, neurologists, and content experts from North America and Europe. RESULTS: The Tool-Kit includes six core variables to measure ETS, six to measure sun exposure, and six to measure vitamin D intake. The Tool-Kit can be accessed online ( www.maelstrom-research.org/mica/network/tool-kit ). CONCLUSION: The goals of the Tool-Kit are to enhance exposure measurement in newly designed pediatric MS studies and comparability of results across studies, and in the longer term to facilitate harmonization of studies, a methodological approach that can be used to circumvent issues of small sample sizes. We believe the Tool-Kit will prove to be a valuable resource to guide pediatric MS researchers in developing study-specific questionnaire.

Familiar ethical issues amplified: how members of research ethics committees describe ethical distinctions between disaster and non-disaster research.

BACKGROUND: The conduct of research in settings affected by disasters such as hurricanes, floods and earthquakes is challenging, particularly when infrastructures and resources were already limited pre-disaster. However, since post-disaster research is essential to the improvement of the humanitarian response, it is important that adequate research ethics oversight be available. METHODS: We aim to answer the following questions: 1) what do research ethics committee (REC) members who have reviewed research protocols to be conducted following disasters in low- and middle-income countries (LMICs) perceive as the key ethical concerns associated with disaster research?, and 2) in what ways do REC members understand these concerns to be distinct from those arising in research conducted in non-crisis situations? This qualitative study was developed using interpretative description methodology; 15 interviews were conducted with REC members. RESULTS: Four key ethical issues were identified as presenting distinctive considerations for disaster research to be implemented in LMICs, and were described by participants as familiar research ethics issues that were amplified in these contexts. First, REC members viewed disaster research as having strong social value due to its potential for improving disaster response, but also as requiring a higher level of justification compared to other research settings. Second, they identified vulnerability as an overarching concern for disaster research ethics, and a feature that required careful and critical appraisal when assessing protocols. They noted that research participants' vulnerabilities frequently change in the aftermath of a disaster and often in unpredictable ways. Third, they identified concerns related to promoting and maintaining safety, confidentiality and data security in insecure or austere environments. Lastly, though REC members endorsed the need and usefulness of community engagement, they noted that there are significant challenges in a disaster setting over and above those typically encountered in global health research to achieve meaningful community engagement. CONCLUSION: Disaster research presents distinctive ethical considerations that require attention to ensure that participants are protected. As RECs review disaster research protocols, they should address these concerns and consider how justification, vulnerability, security and confidentially, and community engagement are shaped by the realities of conducting research in a disaster.

Functional disability 5 years after acute respiratory distress syndrome.

BACKGROUND: There have been few detailed, in-person interviews and examinations to obtain follow-up data on 5-year outcomes among survivors of the acute respiratory distress syndrome (ARDS). METHODS: We evaluated 109 survivors of ARDS at 3, 6, and 12 months and at 2, 3, 4, and 5 years after discharge from the intensive care unit. At each visit, patients were interviewed and examined; underwent pulmonary-function tests, the 6-minute walk test, resting and exercise oximetry, chest imaging, and a quality-of-life evaluation; and reported their use of health care services. RESULTS: At 5 years, the median 6-minute walk distance was 436 m (76% of predicted distance) and the Physical Component Score on the Medical Outcomes Study 36-Item Short-Form Health Survey was 41 (mean norm score matched for age and sex, 50). With respect to this score, younger patients had a greater rate of recovery than older patients, but neither group returned to normal predicted levels of physical function at 5 years. Pulmonary function was normal to near-normal. A constellation of other physical and psychological problems developed or persisted in patients and family caregivers for up to 5 years. Patients with more coexisting illnesses incurred greater 5-year costs. CONCLUSIONS: Exercise limitation, physical and psychological sequelae, decreased physical quality of life, and increased costs and use of health care services are important legacies of severe lung injury.

KEeP ACTIVe Club Study: Kidney Transplant Recipients' Experiences of a Physical Activity and Social Interaction Virtual Group.

Background: It can be difficult for kidney transplant recipients (KTRs) to be physically active after their transplantation. Physical inactivity is a risk factor for cardiovascular disease, one of the leading cause of death among KTRs. To help KTRs start and maintain a physical activity routine, we developed the KEeP ACTIVe Club, a 6-month online intervention with access to a kinesiologist, a patient partner, and a private support group with an online platform (Facebook). Objective: The objective of this study was to capture the participants' experiences of the KEeP ACTIVe Club. Design: Individual interviews. Setting: The Center hospitalier de l'Université de Montréal (CHUM) and the McGill University Health Center (MUHC) kidney transplant programs. Participants: Kidney transplant recipients who participated in the KEeP ACTIVe Club. Methods: Between October and December 2021, we conducted 11 individual semi-directed interviews with KTRs from 2 urban kidney transplant programs who participated in the KEeP ACTIVe Club. The interviews were digitally recorded and transcribed. Thematic analysis was conducted. Results: Participants' principal motivation to participate in the KEeP ACTIVe Club was to improve their physical fitness following their transplant in a pandemic period. One of the main benefits of the KEeP ACTIVe Club was the improvement of participant's self-confidence and the knowledge gained regarding exercises adapted to their reality as KTRs. However, the small number of participants and the schedules of classes offered were viewed as a pitfall of the current intervention. Finally, the peer mentoring and support gained by other participants were important and viewed as highly impactful aspects of the KEeP ACTIVe Club. Limitations: Only 11 of the 18 patients who participated in the KEeP ACTIVe Club took part in the interviews. Conclusion: Participants reported a positive experience with the KEeP ACTIVe Club. Peer mentoring and support gained from other participants seem to be essential aspects of the experience within the KEeP ACTIVe Club. This program is a good avenue to offer in post-transplant care to help KTRs to be more active and to connect with other patients.

Contexte: Il peut être difficile pour les receveurs d'une greffe de rein d'être actifs physiquement après la transplantation. L'inactivité est un facteur de risque de maladie cardiovasculaire, une des principales causes de décès chez les greffés du rein. Afin d'aider ces patients à entreprendre une routine d'activité physique et à la maintenir, nous avons développé le KEeP ACTIVe Club, une intervention en ligne d'une durée de six mois qui donne accès à un kinésiologue, à un patient partenaire et à un groupe privé de soutien par le biais d'une plateforme en ligne (Facebook). Objectifs: Connaître l'expérience des participants au KEeP ACTIVe Club. Conception: Entretiens individuels. Cadre: Les programme de transplantation rénale du Center hospitalier de l'Université de Montréal (CHUM) et du Centre universitaire de santé McGill (CUSM). Participants: Des receveurs d'une greffe de rein ayant participé au KEeP ACTIVe Club. Méthodologie: Entre octobre et décembre 2021, nous avons mené 11 entretiens individuels semi-dirigés avec des receveurs d'une greffe rénale qui ont participé au KEeP ACTIVe Club dans deux programmes de transplantation en center urbain. Les entretiens ont été enregistrés en mode numérique, transcrits, puis une analyze thématique a été réalisée. Résultats: La principale motivation des receveurs à participer au KEeP ACTIVe Club était d'améliorer leur condition physique après la greffe, en période pandémique. Les principaux avantages d'avoir participé au KEeP ACTIVe Club ont été l'augmentation de la confiance en soi et l'acquisition de connaissances sur des exercices adaptés à leur réalité de greffés du rein. Le faible nombre de participants et l'horaire des cours proposés ont été perçus comme des faiblesses de l'intervention. Enfin, le mentorat par les pairs et le soutien reçu des autres participants ont été jugés importants et perçus comme des aspects très positifs du KEeP ACTIVe Club. Limites: Sur les dix-huit patients inscrits au KEeP ACTIVe Club, seuls onze ont participé aux entrevues. Conclusion: Les participants ont déclaré avoir eu une expérience positive avec le KEeP ACTIVe Club. Le mentorat par les pairs et le soutien reçu des autres participants semblent être des aspects essentiels de l'expérience positive vécue au sein du KEeP ACTIVe Club. Ce programme est une bonne avenue à proposer dans les soins post-transplantation pour aider les greffés du rein à être plus actifs physiquement et à échanger avec d'autres patients.

Veterans' physical health.

How individuals age is affected by life experiences. What we know today about aging has been largely shaped by a generation who experienced the special circumstances of wartime in their formative years. In this review, we investigate the research question, "What is known about the physical health of Canadian veterans?" In answering this question, we summarize the literature on Canadian Veterans but also include international literature on the physical health of American and Australian Veterans, along with some information from reports from Great Britain and other parts of Europe. Areas in which veterans perhaps fare worse than civilians of similar age include general health, hearing loss, musculoskeletal disorders, infections, cirrhosis, skin conditions, stomach conditions, neurologic conditions, and cardiovascular disease. The differing effects of combat on female veterans are also summarized. The healthy warrior effect is discussed along with its impact on research findings and the importance of choosing an appropriate control group.

Does feeling pain help prepare future clinicians to treat pain? A qualitative exploration of a novel experiential approach to teaching health professional students about pain.

BACKGROUND AND INTRODUCTION: Pain is a subjective phenomenon, that is often misunderstood and invalidated. Despite recent advances in health professional training, it remains unclear how students should be taught about the subjectivity of pain. This study explored how a novel teaching activity that integrated physiotherapy students' first-hand experiences with laboratory-induced pain could address this gap. OBJECTIVE: The study aimed to explore the experiences and perceptions of physiotherapy students in relation to a workshop where physiotherapy students experienced laboratory induced pain. METHODS: We used a descriptive qualitative research design. Eighteen students participated in interviews. Transcripts were analyzed using an inductive conventional content analysis. RESULTS: We identified four overarching themes: 1) First-hand pain experiences facilitated engagement in learning; 2) Reflecting on these personal and peer pain experiences helped students make sense of pain; 3) The learning activity helped students understand the inherent subjectivity and complexity of pain; and 4) Students saw benefits for clinical practice. CONCLUSION: Integrating first-hand pain experiences within entry-level physiotherapy training appears to have novel value in helping students understand pain subjectivity. Future research should use robust and controlled designs to explore how this novel approach can be used to facilitate further understanding and empathy within clinical interactions with people living with pain.

The Canadian Longitudinal Study on Aging: A Vehicle for Research on Aging in Older Veterans.

INTRODUCTION: Research on the health of older Veterans in Canada is an emerging area. Few population-based studies in Canada have included older Veterans as a specific group of interest. This paper describes a cohort of self-identified Veterans within the Canadian Longitudinal Study on Aging (CLSA). MATERIALS AND METHODS: Using data from the CLSA baseline assessment (2011-2015), we describe sociodemographic and health characteristics along with military-related variables in a cohort of Veterans in Canada. We also estimate the number of Canadian and non-Canadian Veterans living in Canada at the time of the CLSA baseline data collection. RESULTS: We estimate that at the CLSA baseline, there were 718,893 (95% confidence interval [CI], 680,033-757,110) Canadian Veterans and 185,548 (95% CI, 165,713-205,100) non-Canadian Veterans aged 45-85 years living in Canada. Veterans were older and predominantly male compared to non-Veterans in the CLSA. Following age and sex adjustment, the distribution of sociodemographic and health characteristics was similar across all groups. The majority (> 85%) of participants in each comparison group reported self-rated general and mental health as excellent, very good, or good. Following age and sex adjustment, most characteristics across groups remained similar. One exception was mental health, where a greater proportion of Veterans screened positive for depression and anxiety relative to non-Veterans. CONCLUSIONS: Using CLSA baseline data, we estimate the number of older Veterans in Canada and present descriptive data that highlight interesting differences and similarities between Veterans and non-Veterans living in Canada. Canadian and non-Canadian Veterans in the CLSA are presented separately, with the latter group having not been previously studied in Canada. This paper presents a snapshot of a cohort of self-identified Veterans within the CLSA at study baseline and highlights the potential of the CLSA as a vehicle for studying the aging Veteran population in Canada for years to come.

Disseminating Knowledge to Providers on Exercise Training After Solid Organ Transplantation.

INTRODUCTION: The objectives of our dissemination project were (1) to disseminate the evidence supporting exercise training in solid organ transplantation to exercise professionals, health-care professionals, physicians, and directors of transplant programs in order to enhance their ability to apply evidence to practice and (2) to build a community of exercise professionals and researchers across Canada. METHODS: We used the 5-step Patient-Centered Outcomes Research Institute model for knowledge translation to guide our project: (1) evidence assessment, (2) audience and partner identification, (3) dissemination, (4) implementation, and (5) evaluation. After meeting with experts in the field, conducting a literature review, and identifying an appropriate audience, we took our presentations on the road across Canada. RESULTS: We visited 10 transplant centers and held interactive knowledge translation sessions in each center. To provide sustainability and to facilitate the adoption of the research evidence, we founded the Canadian Network for Rehabilitation and Exercise for Solid Organ Transplant Optimal Recovery network and created its website. CONCLUSIONS: Our project raised awareness of the importance of exercise among many health professionals in Canada and built a community of exercise professionals and researchers in the field of transplantation through the rehabilitation network. It also led to the creation of online resources that will facilitate the implementation of rehabilitation programs in transplant centers.

A Qualitative Study to Inform a More Acceptable Pulmonary Rehabilitation Program after Acute Exacerbation of Chronic Obstructive Pulmonary Disease.

Rationale: Current international guidelines for prevention of acute exacerbation of chronic obstructive pulmonary disease (AECOPD) recommend enrolment and participation in a pulmonary rehabilitation (PR) program within 4 weeks of hospital discharge. However, there is poor uptake of these programs as well as low adherence and completion rates.Objectives: The objectives of this study were to explore the views of patients and healthcare professionals (HCPs) on PR after AECOPD and how participation could be enhanced.Methods: A qualitative study was undertaken, and data were analyzed using deductive thematic analysis. A total of 13 patients who had experienced an AECOPD in the previous 6 months and 11 HCPs experienced in the management of COPD participated in face-to-face, semistructured interviews. Patients and HCPs were recruited from both rehabilitation and acute hospital settings.Results: Four main themes were identified: 1) uncertainty about timing of PR-most HCPs endorsed the professional guidelines that advocate for PR programs to begin within 4 weeks of an AECOPD; patients, however, varied drastically in their view of the ideal timing to start a PR program, anywhere from before an exacerbation (perhaps preventing one) and up to 6-8 weeks after exacerbation; 2) tailored and flexible manner to deliver PR programs with a gradual start-patients and HCPs talked about individually tailored programs with a gradual introduction of exercise and teaching sessions; some HCPs advocated allowing patients to pick and choose which elements would help them the most; 3) education for all-patients would like HCPs to be more informed and informative about the PR programs available in their neighborhoods, and HCPs focused on how they could educate patients about their disease and how better to manage it; and 4) logistical, disease-related, and psychological barriers-barriers to PR were discussed by both HCPs and patients; these fell into two categories: a) delivery issues (i.e., transportation and location of PR); and b) patient-specific issues (too sick or too well, high levels of anxiety).Conclusions: Our findings lay the foundation for the development of a flexible, stepped-care approach to delivering PR after AECOPD, which should be tailored according to the needs and preferences of the individual.

One-year outcomes and health care utilization in survivors of severe acute respiratory syndrome.

BACKGROUND: Severe Acute Respiratory Syndrome (SARS) became a global epidemic in 2003. Comprehensive information on 1-year outcomes and health care utilization is lacking. Research conducted during the SARS outbreak may help inform research planning for future public health emergencies. The objective of this study was to evaluate the 1-year outcomes in survivors of SARS and their family caregivers. METHOD: The study was prospective and observational. We evaluated 117 SARS survivors from Toronto, Ontario. Patients were interviewed and underwent physical examination, pulmonary function testing, chest radiography, a 6-minute-walk test, quality-of-life measures, and self-report of health care utilization. At 1 year, informal caregivers were identified for a survey on caregiver burden. RESULTS: The enrolled survivors of SARS were young (median age, 42 years), and most were women (67%) and health care workers (65%). At 1 year after hospital discharge, pulmonary function measures were in the normal range, but 18% of patients had a significant reduction in distance walked in 6 minutes. The Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) domains were 0.3 to 1.0 SD below normal at 1 year. Of the patients, 17% had not returned to work by 1 year. Fifty-one patients required 668 visits to psychiatry or psychology practitioners. During the SARS epidemic, informal caregivers reported a decline of 1.6 SD below normal on the mental component score of the SF-36. CONCLUSIONS: Most SARS survivors had good physical recovery from their illness, but some patients and their caregivers reported a significant reduction in mental health 1 year later. Strategies to ameliorate the psychological burden of an epidemic on the patient and family caregiver should be considered as part of future pandemic planning.

Earthquakes to Floods: A Scoping Review of Health-related Disaster Research in Low- and Middle-income Countries.

INTRODUCTION: Health-related disaster research is a relatively small; but growing field of inquiry.  A better understanding of the scope and scale of health-related disaster research that has occurred in low- and middle-income countries (LMICs) would be useful to funders, researchers, humanitarian aid organizations, and governments as they strive to identify gaps, disparities, trends, and needs of populations affected by disasters. METHODOLOGY: We performed a scoping review using the process outlined by Arksey & O'Malley to assess the characteristics of peer-reviewed publications of empirical health-related disaster research conducted in LMICs and published in the years 2003-2012. RESULTS: Five hundred and eighty-two relevant publications were identified.  Earthquakes were by far the most commonly researched events (62% of articles) in the review's timeframe.  More articles were published about disasters in China & South Asia/South East Asia than all other regions.  Just over half of the articles (51%) were published by research teams in which all the authors' primary listed affiliations were with an institution located in the same country where the research was conducted.  Most of the articles were classified as either mental health, neurology and stress physiology (35%) or as traumatology, wounds and surgery (19%).  In just over half of the articles (54%), data collection was initiated within 3 months of the disaster, and in 13% research was initiated between 3 and 6 months following the disaster.  The articles in our review were published in 282 different journals. DISCUSSION: The high number of publications studying consequences of an earthquake may not be surprising, given that earthquakes are devastating sudden onset events in LMICs.  Researchers study topics that require immediate attention following a disaster, such as trauma surgery, as well as health problems that manifest later, such as post-traumatic stress disorder.  One neglected area of study during the review's timeframe was the impact of disasters on non-communicable and chronic diseases (excluding mental health), and the management of these conditions in the aftermath of disasters. Strengthening disaster research capacity is critical for fostering robust research in the aftermath of disasters, a particular need in LMICs.

One-year outcomes in survivors of the acute respiratory distress syndrome.

BACKGROUND: As more patients survive the acute respiratory distress syndrome, an understanding of the long-term outcomes of this condition is needed. METHODS: We evaluated 109 survivors of the acute respiratory distress syndrome 3, 6, and 12 months after discharge from the intensive care unit. At each visit, patients were interviewed and underwent a physical examination, pulmonary-function testing, a six-minute-walk test, and a quality-of-life evaluation. RESULTS: Patients who survived the acute respiratory distress syndrome were young (median age, 45 years) and severely ill (median Acute Physiology, Age, and Chronic Health Evaluation score, 23) and had a long stay in the intensive care unit (median, 25 days). Patients had lost 18 percent of their base-line body weight by the time they were discharged from the intensive care unit and stated that muscle weakness and fatigue were the reasons for their functional limitation. Lung volume and spirometric measurements were normal by 6 months, but carbon monoxide diffusion capacity remained low throughout the 12-month follow-up. No patients required supplemental oxygen at 12 months, but 6 percent of patients had arterial oxygen saturation values below 88 percent during exercise. The median score for the physical role domain of the Medical Outcomes Study 36-item Short-Form General Health Survey (a health-related quality-of-life measure) increased from 0 at 3 months to 25 at 12 months (score in the normal population, 84). The distance walked in six minutes increased from a median of 281 m at 3 months to 422 m at 12 months; all values were lower than predicted. The absence of systemic corticosteroid treatment, the absence of illness acquired during the intensive care unit stay, and rapid resolution of lung injury and multiorgan dysfunction were associated with better functional status during the one-year follow-up. CONCLUSIONS: Survivors of the acute respiratory distress syndrome have persistent functional disability one year after discharge from the intensive care unit. Most patients have extrapulmonary conditions, with muscle wasting and weakness being most prominent.

Review of retention strategies in longitudinal studies and application to follow-up of ICU survivors.

OBJECTIVE: To review the literature on retention strategies in follow-up studies and their relevance to critical care and to comment on the Toronto experience with the acute respiratory distress syndrome (ARDS) and severe acute respiratory syndrome (SARS) follow-up studies. DESIGN AND SETTING: Literature review and two cohort studies in a tertiary care hospital in Toronto, Canada. PATIENTS AND PARTICIPANTS: ARDS and SARS patients. MEASUREMENTS AND RESULTS: Review articles from the social sciences and medicine are summarized and our own experience with two longitudinal studies is drawn upon to elucidate strategies that can be successfully used to attenuate participant drop-out from longitudinal studies. Three key areas for retention of subjects are identified from the literature: (a) respect for patients: respect for their ideas and their time commitment to the research project; (b) tracking: collect information on many patient contacts at the initiation of the study and outline tracking procedures for subjects lost to follow-up; and (c) study personnel: interpersonal skills must be reinforced, flexible working hours mandated, and support offered. Our 5-year ARDS and 1-year SARS study retention rates were 86% and 91%, respectively, using these methods. CONCLUSIONS: Strategies to reduce patient attrition are time consuming but necessary to preserve internal and external validity. When the follow-up system is working effectively, researchers can acquire the necessary data to advance knowledge in their field and patients are satisfied that they have an important role to play in the research project.

Difference in reported pre-morbid health-related quality of life between ARDS survivors and their substitute decision makers.

CONTEXT: Substitute decision makers may consider the pre-morbid health status of their critically ill loved one when making treatment decisions on her/his behalf. OBJECTIVE: To compare estimates of pre-morbid health-related quality of life (HRQOL) obtained from survivors of the acute respiratory distress syndrome (ARDS) with those of their substitute decision makers using the Short Form 36 (SF-36). DESIGN: Prospective cohort study. SETTING: University-affiliated intensive care unit in Toronto, Canada. PATIENTS: A sample of 46 ARDS survivors and their substitute decision makers drawn from a previously described cohort. INTERVENTIONS: We measured agreement and differences between responses on the SF-36 obtained from survivors (at 3 months after ICU discharge) and their substitute decision makers (at study entry). MEASUREMENTS AND RESULTS: Agreement was poor for all SF-36 components and differences reached significance in three domains. In multivariable analysis considering age; sex; Acute Physiology, Age, and Chronic Health Evaluation II score; and Lung Injury Score, only patient age was associated with the mean difference between estimates for the 'Mental Health' domain. On average, estimates of pre-morbid HRQOL obtained from substitute decision makers were lower than those obtained from survivors. CONCLUSION: Agreement between estimates of pre-morbid HRQOL provided by ARDS survivors and their substitute decision makers was poor. Compared with survivors, proxies tended to provide lower estimates of pre-morbid HRQOL. Substitute decision making for incapacitated patients is an imperfect process during which family members may underestimate their loved ones' own perception of pre-morbid health status. Alternatively, survivors of critical illness may overestimate pre-morbid HRQOL.

Outcomes in randomized controlled trials of exercise interventions in solid organ transplant.

AIM: To identify the outcome measures that have been used in randomized controlled trials (RCTs) of exercise training in solid organ transplant (SOT) recipients and to link these outcomes to the International Classification of Functioning, Disability and Health (ICF) framework. METHODS: Electronic literature searches of MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, and Web of Science were performed. We sought RCTs that investigated the effect of exercise training in SOT recipients. Reference lists of all eligible publications were searched for other appropriate studies not identified by the electronic search. A complete list of outcome measures used in the RCTs was generated and each of these was linked to an ICF category. RESULTS: Four hundred and thirteen articles were retrieved, of which 35 met our inclusion criteria. The studies included were designed to compare the effects of exercise training programs to usual care or to another exercise training program and reported on recipients of heart (n = 21), kidney (n = 9), lung (n = 3) or liver (n = 2) transplant. Of the 126 outcome measures identified, 62 were used as primary outcome measures. The most commonly occurring primary outcomes were aerobic capacity using the peak VO2 (n = 13), quality of life using the short-form-36 (n = 8), and muscle strength (n = 7). These outcome measures were linked to 113 ICF categories and the majority of outcomes fall into the body function domain (n = 93). CONCLUSION: There is little standardization in outcome measures used in RCTs of exercise interventions in SOT recipients. The ICF framework can be used to select a core set of outcomes that cross all domains of ICF and that would be appropriate to all SOT recipients.

The Challenge of Timely, Responsive and Rigorous Ethics Review of Disaster Research: Views of Research Ethics Committee Members.

BACKGROUND: Research conducted following natural disasters such as earthquakes, floods or hurricanes is crucial for improving relief interventions. Such research, however, poses ethical, methodological and logistical challenges for researchers. Oversight of disaster research also poses challenges for research ethics committees (RECs), in part due to the rapid turnaround needed to initiate research after a disaster. Currently, there is limited knowledge available about how RECs respond to and appraise disaster research. To address this knowledge gap, we investigated the experiences of REC members who had reviewed disaster research conducted in low- or middle-income countries. METHODS: We used interpretive description methodology and conducted in-depth interviews with 15 respondents. Respondents were chairs, members, advisors, or coordinators from 13 RECs, including RECs affiliated with universities, governments, international organizations, a for-profit REC, and an ad hoc committee established during a disaster. Interviews were analyzed inductively using constant comparative techniques. RESULTS: Through this process, three elements were identified as characterizing effective and high-quality review: timeliness, responsiveness and rigorousness. To ensure timeliness, many RECs rely on adaptations of review procedures for urgent protocols. Respondents emphasized that responsive review requires awareness of and sensitivity to the particularities of disaster settings and disaster research. Rigorous review was linked with providing careful assessment of ethical considerations related to the research, as well as ensuring independence of the review process. CONCLUSION: Both the frequency of disasters and the conduct of disaster research are on the rise. Ensuring effective and high quality review of disaster research is crucial, yet challenges, including time pressures for urgent protocols, exist for achieving this goal. Adapting standard REC procedures may be necessary. However, steps should be taken to ensure that ethics review of disaster research remains diligent and thorough.