Solid organ transplantation (SOT) is a lifesaving procedure for many patients with end-stage organ failure, and also improves quality of life and physical function (1, 2). Physical activity has been shown to improve physical function, quality of life and all-cause mortality in SOT recipients. In addition, exercise in SOT can potentially mitigate secondary transplant-related conditions including cardiovascular risk factors, fatigue, osteoporosis, and muscle atrophy, and promote return to work and societal roles (3, 4). However, the post-transplant effects of extended hospital length of stay, prolonged physical inactivity, and immunosuppression are known to have significant adverse effects on exercise tolerance, skeletal muscle dysfunction, and cardiometabolic risk factors (3–8).

Exercise post-transplant has commonly been undertaken with in-person facility-based programs. However, home-based exercise programs and online resources (i.e., websites and videos) have emerged as a promising strategy in the SOT population to provide greater accessibility and to mitigate infectious risk with the COVID-19 environment (9–11). The Internet is commonly used as a source of health information as it allows easy and immediate access to health information (12). Google and YouTube are two of the most frequently visited search engines on the Internet (13); however, the accuracy and reliability of online health information varies widely based on previously published reports (14–16).

Established exercise recommendations endorsed by the Canadian Society of Transplantation were published in 2019 (4). These consensus guidelines were targeted primarily for healthcare professionals and may not translate to patients. Further, there is a lack of online resources provided and/or endorsed by transplant programs. Thus, many SOT recipients may rely on information from online resources for further guidance. Given the emergence from the COVID-19 pandemic and greater reliance on virtual communication, online resources in the form of websites and videos are more likely be utilized to provide education and instruction on rehabilitation modalities in SOT. However, the content and quality of these online resources has not been evaluated. Thus, the objectives of this study were: (1) to characterize websites and videos on exercise and physical activity in adult SOT in the English language; and (2) to assess the content, quality, and understandability and actionability of these online resources. We hypothesized that websites and videos on exercise and physical activity would be variable in their content and quality scores, with foundation/transplant websites and videos having higher content and quality scores compared to other categories across all transplant groups.

To our knowledge, this is the first study to characterize online resources in English on exercise and physical activity in SOT, and to assess the content, quality, understandability and actionability of patient-directed online resources for SOT recipients. Increasing awareness of and accessibility to high-quality online resources on physical activity and exercise in SOT may help promote engagement and adherence to activity post-transplant.

Content scores related to exercise and physical activity in SOT were low across websites and videos, and only minimally captured items outlined in consensus exercise programs (4). These results are similar to a study evaluating the content of online information on physical activity in osteoporosis, which found that the majority of webpages presented information inconsistent with established exercise guidelines (25). According to a qualitative study of the perspectives of healthcare professionals on digital health interventions to support physical activity in SOT, a suitable intervention should include features that promote self-management including physical activity monitoring, tailored education, and access to behavioural change strategies (26). However, only a minority of websites and videos discussed safety considerations and educational aspects of exercise and physical activity. Safety recommendations should consider monitoring of exertional tolerance, exercise in the setting of graft dysfunction or illness, as well as appropriate hydration, sun protection, and consideration of air quality. Further, online interventions that consider behavior change elements, such as goal setting and motivational practices, have also been shown to be particularly effective in promoting self-management and adherence to physical activity. As such, our findings demonstrate that most online resources did not include the key components highlighted across SOT exercise training consensus guidelines, which is consistent with other studies in chronic diseases (14–16, 25, 27, 28).

It is often difficult to assess the quality of online resources on the internet. Information presented on the internet often lacks regulatory oversight and is not subjected to the rigors of quality assurance which increases the risk of disseminating inaccurate information (29, 30). Website and video quality on exercise and physical activity were low. The majority of websites and videos did not use reliable sources of information, lacked additional resources for patient reference, and did not mention areas of uncertainty, which is consistent with previous studies (14–16). This could potentially be remedied by using reliable sources and providing additional online resources for patients seeking further information.

Online materials for exercise and physical activity in SOT also demonstrated low understandability and actionability domains. A minimum threshold of 70% is required for patient-education materials to be considered understandable and/or actionable; however, only 41% of websites and videos met the threshold for understandability and actionability. Of these, only 29% met the threshold for both understandability and actionability. These scores are similar to those reported in other chronic diseases, highlighting an opportunity to improve understandability and actionability across patient educational materials (31–33). Understandability could be improved with the inclusion of short summarized key messages as well as visual aids, which can also serve a dual purpose in improving health literacy. Actionability can be improved by breaking down actions into explicit, manageable steps and providing tangible tools, including exercise templates and charts. Future online resources should consider improving understandability and actionability scores to promote self-management and adherence to exercise and physical activity post-transplant.

Transplant patients are unique in that they are often followed closely by their transplant programs. It is important for healthcare providers to be aware of and to direct their patients to high-quality patient-directed resources. Foundation/advocacy websites and videos had higher content, DISCERN and GQS scores compared to other category types. The online resources that received the highest scores in terms of content, quality, and understandability and actionability were the Canadian Network for Rehabilitation and Exercise for Solid Organ Transplant Optimal Recovery (CAN-RESTORE) and the World Transplant Games Federation- Refit for Life (34, 35). Both online resources are national organizations with multidisciplinary input that provide comprehensive content on physical activity in SOT, tangible exercise action plans, tailored education, and inclusion of behavioural change strategies.

Health literacy plays an important role in self-efficacy and in the management of chronic diseases. To improve comprehension of health information, the American Medical Association (AMA) and National Institutes of Health (NIH) recommend online health information to be written at a grade 6 reading level. The average English reading level of SOT websites was equivalent to grade 13 (advanced skill at college or university), with no websites written at a grade 6 level or lower, highlighting an opportunity to improve comprehension among the SOT community. These results are similar to a meta-analysis analyzing the readability of physical activity educational resources, which found that resources with physical activity-related content had poor readability indices which exceeded the 10th grade reading level (36). Several transplant studies have noted low health literacy among SOT recipients (37). Low health literacy is associated with reduced treatment adherence, increased burden of chronic disease, and poor health outcomes (38). This is particularly applicable to the field of transplantation as the long-term success of transplant patients is predicated on self-management, including adherence to exercise and physical activity, which has been shown to reduce the risk of all-cause mortality and improve health-related quality of life (39, 40). Houts et al. reviewed the role of pictures in improving communication on health education and found that the inclusion of pictures and/or diagrams improved attention and comprehension of health information, and may improve adherence (41). Similarly, the inclusion of summaries with key takeaway points has also been shown to improve comprehension and adherence to health information (42, 43). Thus, further work to improve health literacy in patient-education materials may promote self-efficacy and management in SOT, which may translate to improved outcomes post-transplant.

The results of this study should be interpreted considering the following limitations. First, the searches were restricted to websites and videos published in English and limited to the first 200 hits each on Google and YouTube. However, studies have shown that most individuals typically examine the first page of a search engine when searching for online information, suggesting that most (if not) all patient-accessed resources were captured within our search (44). Second, we used a US Internet Protocol address for our search; therefore, search results may be different if the search was conducted in other countries. Third, there are no gold-standard reference guidelines for exercise-training in solid organ transplant recipients, therefore it is possible that we may not have captured all elements across our predefined content scoring system. However, the content score was developed using consensus guidelines, as well as the expertise across our multidisciplinary SOT group and patient partners, which will be a valuable framework for future studies. Fourth, although there was only one primary reviewer, there were three different secondary reviewers which poses the risk of evaluation bias; however, this limitation was minimized through standardization of assessment training, discrepancy review, and requirement for consensus to be reached between the primary and secondary reviewers. Despite these limitations, this is the first comprehensive assessment of patient-directed online health information resources on physical activity and exercise in SOT recipients that included the input of patient partners.

In conclusion, there are a limited number of English resources on exercise and physical activity in SOT. Exercise and physical activity content only partly captured items outlined in consensus exercise program recommendations with a notable limitation of safety and educational components mentioned. Websites and videos were observed to be of low quality, understandability and actionability. This study demonstrates the need for targeted strategies that consider health literacy, as well as comprehensive content and actionability in developing exercise and physical activity resources for English speaking SOT recipients.