Online resources as a source of information for exercise and physical activity in solid organ transplant recipients.

Introduction: Exercise training post-transplant has been shown to improve physical function and quality of life in solid organ transplant (SOT) recipients. Online resources in the form of websites and videos are commonly used to provide education and instruction on exercise and physical activity in SOT; however, the content and quality of these online resources has not been evaluated. Methods: The first 200 websites and videos identified on Google and YouTube using the English search term "exercise and physical activity in solid organ transplantation" were analyzed. Website and video content was evaluated based on 25 key components of exercise and physical activity in SOT as described in established exercise program recommendations. Website and video quality was determined using DISCERN, Global Quality Scale (GQS), and Patient Education Materials and Assessment Tool (PEMAT; threshold for which material is deemed understandable or actionable is >70%). Parametric and non-parametric tests were used to assess website and video characteristics, content, and quality metrics. Results: Forty-nine unique SOT websites (n = 15) and videos (n = 34) were identified, with the two most common categories being foundation/advocacy organizations and scientific resources. The average reading grade level of websites was 13 ± 3. Website and video content scores varied significantly (websites 11.3 ± 6.4; videos 8.4 ± 5.3). DISCERN total score and GQS score were low (median range for DISCERN 2.5-3.0; median for GQS 2.0 for both websites and videos, out of 5). PEMAT understandability and actionability scores were also low across websites and videos (mean range 57%-67% and 47%-65%, respectively). Foundation/advocacy websites had higher content and quality scores compared to scientific organizations and news/media articles. Conclusions: To our knowledge, this is the first comprehensive assessment of online content and quality of website and video resources on physical activity and exercise in adult SOT recipients. There were a limited number of online English patient-directed resources related to physical activity in SOT, most of which only partly captured items outlined in consensus exercise program recommendations and were of low quality and understandability and actionability. This work provides important insight to the English-speaking transplant community on the current state of online exercise health information and provides future direction for resource development.

Virtual Physical Prehabilitation in Lung Transplant Candidates: A Proof-of-Concept Study.

This study aimed to preliminary test the effectiveness of 12-week virtual physical prehabilitation program followed by a maintenance phase. The main objective was to estimate the extent to which it affects exercise capacity, frailty, lower limb strength and health-related quality of life (HRQOL) in lung transplant candidates. The program offered supervised strengthening exercises, independent aerobic exercises and weekly phone calls (maintenance phase). Primary outcome was the six-minute walk distance (6MWD). Secondary outcomes: the Short Physical Performance Battery (SPPB), five-times sit-to-stand test (5STS), the St George's Respiratory Questionnaire (SGRQ) for HRQOL. Twenty patients were included (mean age 57.9; 6 women/14 men); fourteen completed the prehabilitation program and 5 completed the maintenance phase. There was no statistically significant improvement in 6MWD, SPPB or SGRQ after the 12-week program. Most patients either maintained or improved the 6MWT and SPPB scores. There was a significant improvement in the 5STS. After the maintenance phase, most patients either improved or maintained their scores in all outcomes except for the sub-score of symptoms in the SGRQ. A 12-week virtual physical prehabilitation program with a 12-week maintenance phase can help lung transplant candidates improve or maintain their physical function while waiting for transplantation.

Informing the development of the SUCCEED reporting guideline for studies on the scaling of health interventions: A systematic review.

BACKGROUND: Quality reporting contributes to effective translation of health research in practice and policy. As an initial step in the development of a reporting guideline for scaling, the Standards for reporting stUdies of sCaling evidenCEd-informED interventions (SUCCEED), we performed a systematic review to identify relevant guidelines and compile a list of potential items. METHODS: We conducted a systematic review according to Cochrane method guidelines. We searched the following databases: MEDLINE, Embase, PsycINFO, Cochrane Library, CINAHL, Web of Science, from their respective inceptions. We also searched websites of relevant organizations and Google. We included any document that provided instructions or recommendations, e.g., reporting guideline, checklist, guidance, framework, standard; could inform the design or reporting of scaling interventions; and related to the health sector. We extracted characteristics of the included guidelines and assessed their methodological quality using a 3-item internal validity assessment tool. We extracted all items from the guidelines and classified them according to the main sections of reporting guidelines (title, abstract, introduction, methods, results, discussion and other information). We performed a narrative synthesis based on descriptive statistics. RESULTS: Of 7704 records screened (published between 1999 and 2019), we included 39 guidelines, from which data were extracted from 57 reports. Of the 39 guidelines, 17 were for designing scaling interventions and 22 for reporting implementation interventions. At least one female author was listed in 31 guidelines, and 21 first authors were female. None of the authors belonged to the patient stakeholder group. Only one guideline clearly identified a patient as having participated in the consensus process. More than half the guidelines (56%) had been developed using an evidence-based process. In total, 750 items were extracted from the 39 guidelines and distributed into the 7 main sections. CONCLUSION: Relevant items identified could inform the development of a reporting guideline for scaling studies of evidence-based health interventions. This and our assessment of guidelines could contribute to better reporting in the science and practice of scaling.

Feasibility of a Home-Based Exercise Program for Managing Posttransplant Metabolic Syndrome in Lung and Liver Transplant Recipients: Protocol for a Pilot Randomized Controlled Trial.

BACKGROUND: Posttransplant metabolic syndrome (PTMS) is a common contributor to morbidity and mortality among solid organ transplant recipients in the late posttransplant period (≥1 year). Patients diagnosed with PTMS are at a higher risk of cardiovascular disease and frequently experience decreased physical function and health-related quality of life (HRQL). Studies in the early posttransplant period (<1 year) have shown the benefits of facility-based exercise training on physical function and HRQL, but have not evaluated the effects on metabolic risk factors. It remains unclear whether home-based exercise programs are feasible and can be delivered at a sufficient exercise dose to have effects on PTMS. This protocol outlines the methodology of a randomized controlled trial of a partly supervised home-based exercise program in lung transplant (LTx) and orthotopic liver transplant (OLT) recipients. OBJECTIVE: This study aims to evaluate the feasibility (ie, recruitment rate, program adherence, attrition, safety, and participant satisfaction) of a 12-week individualized, home-based aerobic and resistance training program in LTx and OLT recipients initiated 12 to 18 months after transplantation, and to assess estimates of intervention efficacy on metabolic risk factors, exercise self-efficacy, and HRQL. METHODS: In total, 20 LTx and 20 OLT recipients with ≥2 cardiometabolic risk factors at 12 to 18 months after transplantation will be randomized to an intervention (home-based exercise training) or control group. The intervention group will receive an individualized exercise prescription comprising aerobic and resistance training, 3 to 5 times a week for 12 weeks. Participants will meet on a weekly basis (via videoconference) with a qualified exercise professional who will supervise exercise progression, provide support, and support exercise self-efficacy. Participants in both study groups will receive a counseling session on healthy eating with a dietitian at the beginning of the intervention. For the primary aim, feasibility will be assessed through recruitment rate, program adherence, satisfaction, attrition, and safety parameters. Secondary outcomes will be measured at baseline and 12 weeks, including assessments of metabolic risk factors (ie, insulin resistance, abdominal obesity, blood pressure, and cholesterol), HRQL, and exercise self-efficacy. Descriptive statistics will be used to summarize program feasibility and effect estimates (means and 95% CIs) for sample size calculations in future trials. RESULTS: Enrollment started in July 2021. It is estimated that the study period will be 18 months, with data collection to be completed by December 2022. CONCLUSIONS: A partly supervised home-based, individually tailored exercise program that promotes aerobic and resistance training and exercise self-efficacy may be an important intervention for improving the metabolic profile of LTx and OLT recipients with cardiometabolic risk factors. Thus, characterizing the feasibility and effect estimates of home-based exercise constitutes the first step in developing future clinical trials designed to reduce the high morbidity associated with PTMS. TRIAL REGISTRATION: ClinicalTrials.gov NCT04965142; https://clinicaltrials.gov/ct2/show/NCT04965142. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/35700.

Establishing patient-partner priorities within the primary and integrated health care innovations network in Canada.

Background: Many experienced primary care researchers have seen the benefits of meaningful engagement with patients and community members in their research, elevating them to a research partner status. The research questions and agendas, however, are often initiated and determined by the researchers. Increasingly, research teams, organizations and networks actively engage with patient-partners to better understand what their research priorities would look like, bringing patient-partners into the research process much earlier. Among many other initiatives within the Strategy for Patient Oriented Research program, a Primary and Integrated Health Care Innovations Network (PIHCIN) was established in Canada, which includes 11 geographically distributed research networks. As part of PIHCIN, a Pan-Canadian Patient Council (the Council) was established with representatives from each provincial site. To ensure their voices were being heard, the Council decided to establish their own research priorities for consideration by the PIHCI network. Objective: To establish patient-partner priorities in the Canadian primary health care context Methods: The main goal of the Council was to submit research priorities to identify what was important from a patient-partner perspective. Through consensus building and prioritization voting, the Council developed and presented a draft of their research priorities to the PIHCI Network Leadership Council. In a second step, the Council decided that the process was missing from the document. Subsequently, with the use of the SMART goal framework, the Council engaged in a process to establish how research priorities could be accomplished. Results: The initial research priorities comprised 11 items, including priorities concerning patient's access to data, integrated health teams, patient initiated collaborative research, virtual care, broader definition of health, etc. The initial priorities eventually evolved into a set of principles, strategic operating goals, and finalized research priorities. Conclusion: Through an iterative process, the Council was able to lead, initiate and differentiate strategic operating goals from the research priorities. This process and results can provide insight for developing critical input from patient-partners for primary health care research.

Demonstrating the complexity of patient-partnered research in primary care: a snapshot of patient-partners.

Background: In Canada, we are still struggling to achieve the critical goal of enabling performant health care systems that moves research results to real-world impact particularly for primary care. To address this, we have created a primary care research network where patient partners are involved in all levels of decision making for governance, research, and innovation. For many researchers, however, it is unclear what primary care patient-partners 'brings to the table.' As the Pan-Canadian Patient Council of the Primary and Integrated Health Care Innovations Network, we wanted to provide insight into the richness of expertise and experience patient partners contribute. Objectives: To provide an example of the characteristics, history and lived experience that patient-partners in a primary care research network represent and demonstrate the resource this presents. Methods: As current council members, representing 10 provinces, we developed a survey of our demographics, personal history and experience in patient-oriented research using iterative, collaborative meetings. The answers to the questions provided "snapshots" for each of us. As a group, we worked with researchers to descriptively and thematically analyze the responses to provide insight and a description of primary care research patient partners. Results: With 2 men and 8 women, we represented an average of 42.5 years of experience with health conditions (range 10-84 years) including cancer, genetic conditions, and multiple chronic diseases. On average, we worked with 4.7 different organizations each (range 2-9) on research topics covering the spectrum of primary care. Many of us acted as mentors for researchers and trainees. All of us were innovators and influencers with demonstrated leadership skills. A need for more diversity in terms of age and underrepresented minorities was noted. Conclusion: Diversity of life experience, extensive exposure to the health care system and strong engagement with multiple organizations for primary care research characterized us as patient-partners. This lived expertise represents a significant asset for researchers. This work should encourage researchers to starting thinking about how to include primary care patient-partners as a crucial resource in health research.

High Users of Healthcare Services: Development and Alpha Testing of a Patient Decision Aid for Case Management.

BACKGROUND: Some patients with complex healthcare needs become high users of healthcare services. Case management allows these patients and their interprofessional team to work together to evaluate their needs, priorities and available resources. High-user patients must make an informed decision when choosing whether to engage in case management and currently there is no tool to support them. OBJECTIVE: The objective of this study was to develop and conduct a pilot alpha testing of a patient decision aid that supports high-user patients with complex needs and the teams who guide those patients in shared decision making when engaging in case management. METHODS: We chose a user-centered design to co-develop a patient decision aid with stakeholders informed by the Ottawa Research Institute and International Patient Decision Aid Standards frameworks. Perceptions and preferences for the patient decision aid's content and format were assessed with patients and clinicians and were iteratively collected through interviews and focus groups. We developed a prototype and assessed its acceptability by using a think-aloud method and a questionnaire with three patient-partners, six clinicians and seven high-user patients with complex needs. RESULTS: The three rounds of evaluation to assess the decision aid's acceptability highlighted comments related to simplicity, readability and visual aspect. A section presenting clinical vignettes including story telling was identified as the most helpful. CONCLUSIONS: We created and evaluated a patient decision aid. Considering the positive comments, we believe that this aid has the potential to help high-user patients with complex care needs make better choices concerning case management.

Some patients are living with physical and mental health problems. They also may have handicaps and unsuitable backgrounds. This may lead them to use health services more often. Case management is a service offered by a team of health professionals. They help patients to decide what is important to them based on their values and preferences. Currently, no tools exist for that service. We built and assessed a tool to support patients in their decisions. With this tool, they think about engaging in case management or continuing with usual care. They can also postpone their decision to a later time. This tool will present data based on scientific studies about case management. It will help patients to clarify their values and preferences to make the best decision for them. This tool was built with a team of researchers, healthcare professionals, managers and patient-partners. It was built according to several guidelines. We met participants and they answered questions that helped us to build our tool. We also ensured the tool was acceptable to them. The most frequent comments were to make it simpler and to use simple vocabulary. The look was also important for the participants. The latter found that the section where patients could write their own story was useful. Patients also found that reading stories about other patients like them was helpful. Our tool will help patients with complex care needs make better choices concerning their health based on their values and scientific data.

Changes in 6-minute walking distance in lung transplant candidates while participating in a home-based pre-habilitation program-A retrospective chart review.

Home-based exercise programs may offer a less costly alternative to providing exercise pre-transplant to a large number of patients. We describe the changes in 6-minute walk distance (6MWD) in lung transplant candidates who participated in a home-based exercise program and their relationship to post-transplant outcomes. Retrospectively, we investigated 159 individuals while awaiting transplantation who performed the surgery between 2011 and 2015. Primary outcome was 6MWD at time of assessment for transplant, last test prior to transplant and one-month post-transplant. 6MWD decreased by 28 ± 93.9 m between the time of assessment and the last 6MWD prior to transplantation (P < .001). Forty-one patients (25.8%) increased their 6MWD (mean + 85.8 ± 42.8 m); 72 patients (45.3%) decreased their 6MWD (mean -109.8 ± 71.2 m); and 46 patients (28.9%) had no change in 6MWD (-1.5 ± 15.7 m). There was a moderate correlation (r = .528; P < .001) between the last 6MWD prior to transplant and 6MWD post-transplant. Change in 6MWD prior to transplant weakly correlated with length of time on mechanical ventilation (r = -.185; P = .034). When adjusted for covariates, change in 6MWD prior to transplant was not associated with length of time on mechanical ventilation, total hospital LOS, or intensive care unit LOS. The majority of the patients were able to either increase or maintain their 6MWD while participating in a home-based pre-habilitation program during the waiting list period. Prospective research is needed to evaluate the effects of home-based pre-habilitation program for lung candidates.

Essential items for reporting of scaling studies of health interventions (SUCCEED): protocol for a systematic review and Delphi process.

BACKGROUND: The lack of a reporting guideline for scaling of evidence-based practices (EBPs) studies has prompted the registration of the Standards for reporting studies assessing the impact of scaling strategies of EBPs (SUCCEED) with EQUATOR Network. The development of SUCCEED will be guided by the following main steps recommended for developing health research reporting guidelines. METHODS: Executive Committee. We established a committee composed of members of the core research team and of an advisory group. Systematic review. The protocol was registered with the Open Science Framework on 29 November 2019 (https://osf.io/vcwfx/). We will include reporting guidelines or other reports that may include items relevant to studies assessing the impact of scaling strategies. We will search the following electronic databases: EMBASE, PsycINFO, Cochrane Library, CINAHL, Web of Science, from inception. In addition, we will systematically search websites of EQUATOR and other relevant organizations. Experts in the field of reporting guidelines will also be contacted. Study selection and data extraction will be conducted independently by two reviewers. A narrative analysis will be conducted to compile a list of items for the Delphi exercise. CONSENSUS PROCESS: We will invite panelists with expertise in: development of relevant reporting guidelines, methodologists, content experts, patient/member of the public, implementers, journal editors, and funders. We anticipated that three rounds of web-based Delphi consensus will be needed for an acceptable degree of agreement. We will use a 9-point scale (1 = extremely irrelevant to 9 = extremely relevant). Participants' response will be categorized as irrelevant (1-3), equivocal (4-6) and relevant (7-9). For each item, the consensus is reached if at least 80% of the participants' votes fall within the same category. The list of items from the final round will be discussed at face-to-face consensus meeting. Guideline validation. Participants will be authors of scaling studies. We will collect quantitative (questionnaire) and qualitative (semi-structured interview) data. Descriptive analyses will be conducted on quantitative data and constant comparative techniques on qualitative data. DISCUSSION: Essential items for reporting scaling studies will contribute to better reporting of scaling studies and facilitate the transparency and scaling of evidence-based health interventions.

Decisional needs assessment of patients with complex care needs in primary care.

RATIONALE: Patients with complex care needs who frequently use health services often face challenges in managing their health and with integrated care, leading to frequent decision making. These complex care needs require a good understanding of health issues and their impact on daily life. As the decisional needs of this particular clientele have yet to be described in scientific literature, they warrant further study. OBJECTIVES: To assess the decision-making needs of patients with complex care needs (PCCN) who frequently use health care services. METHODS: We performed a multicenter cross-sectional qualitative descriptive study in four institutions of the health and social services network of Quebec (Canada). We enrolled a convenience sample of PCCNs who frequently use health care services, health care providers, case managers, and decision-makers. We conducted interviews and focus groups and investigated decisional needs according to the Ottawa decision support framework: roles played and desired in the decision-making process, facilitators, and barriers. We conducted qualitative data collection and qualitative deductive/inductive thematic analysis within and across participating groups. RESULTS: In total, 16 patients, 38 clinicians, six case managers, and 14 decision-makers participated in the study. The decisional needs of this clientele are numerous, varied and different from those of the general population. We identified 26 decisional needs grouped under five themes. The most frequent decisions related to visiting the emergency department, moving to a nursing home, and adhering to a plan or treatment. In addition, we identified new themes such as patients' fear and mistrust of health professionals, differences of opinion between health professionals and health professionals' preconceived opinions of patients. CONCLUSION: We observed a wide range of types of decisions that patients face and differences in decision-making needs across participating groups. Our results should inform future research on the development of a patient decision aid tool.