The aim of MoveONParkinson is to develop an innovative motivational solution for personalized exercise trough the ONParkinson platform to promote sustained exercise adherence, by addressing behaviour change and enhancing exercise self-efficacy through the features of the digital solution, which is expected to heighten PD management by the triad. The relevance of this aim is underpinned by the benefits of sustained exercise in health-related outcomes, such as QoL and PD symptomatology (Feng et al., 2020). This thesis contributed to
the MoveONParkinson project by addressing the Ideation and Design phases of the IDEAS framework.
The development of the ONParkinson digital solution and subsequent integration of the exercise module comprising the MoveONParkinson project were addressed during the Ideation phase, where sustained exercise adherence was defined as the target behaviour. Intervention design was grounded on the SCT, due to the evidence supporting the effectiveness of digital interventions based on SCT to address physical activity and exercise and to support self-management in chronic conditions (Walsh et al., 2019; Kim et al., 2021; Lightfoot et al., 2022;
Stephens et al., 2022; Lau et al., 2022). Since behaviour change is attainable by integrating SCT constructs in mHealths apps (Voth et al., 2016), behavioural and socioenvironmental determinants for exercise adherence on PwPD were identified, with the aim of being translated into features of the Mobile App.
The Design phase included the selection of prototypes of the Mobile and Web interfaces that were found suitable according to the recommendations for developing mHealth technologies. These must derive from devices with an acceptable benefit-to-burden ratio (smartphone or tablet), yield clinically useful information, target the needs of end-users, and deliver individualized data to the triad. (Espay et al., 2019). The following step comprised the development of exercise programs that were uploaded to the online database to create the exercise database of the digital solution, guided by the evidence for the development of exercise programs for PwPD (Collado-Mateo et al., 2021; Zaman et al., 2021). Thus, personalized exercise programs aimed to improve strength, balance, aerobic capacity and performance on ADLs were developed while considering safety and enjoyment of PwPD.
Then, a mixed methods approach was used to gather feedback and assess the acceptability of the Mobile App and the Web Platform, and to evaluate the usability of the latest, by collecting and analysing data from quantitative (questionnaire and SUS) and qualitative data sources (thinking aloud and semi-structured interviews). One of the strengths of this approach is the pragmatic ground of its knowledge claims (consequence-oriented, problem-centred, and pluralistic). Triangulating quantitative and qualitative data sources enhances internal validity, since biases inherent to one method neutralize the biases of other methods (Creswell, 2003;
Fetters et al., 2013; Schoonenboom & Johnson, 2017). Furthermore, thematic analysis followed a hybrid approach. It departed from deductive reasoning with the development of a codebook, acting as a data management tool while providing evidence to substantiate the credibility of the study (Fereday et al., 2006; Swain, 2018). The following inductive approach derived from a comprehensive examination of the data and complemented the deductive approach by coding the data without trying to fit it into a pre-existing frame or the preconceptions of the research (Braun & Clarke, 2006).
Feedback, acceptability and usability of the Web Platform
The usability of the Web Platform was evaluated to identify specific problems with the interface and focus on the interaction between the user and task within a controlled environment, since effective usability evaluations improve the predictability of the interface and save development time and costs (Brown et al., 2013). It was evaluated by the physiotherapists, which awarded SUS a mean score of 79.50 ± 12.40. Based on the lower and upper bounds of the 95% CI, there is a 95% probability that the true SUS score for the whole population of physiotherapists lies between 73.70 to 85.30, with both values above the median score of 68 and the acceptability threshold of 70 (Bangor et al., 2009). This aligns with recent findings, reporting a mean SUS score of 76.64 ± 15.12 for all the collected digital health apps, and of 83.28 ± 12.39 for “physical activity” apps (Hyzy et al., 2022). However, these results must be carefully interpreted, since the SUS has significant sensitivity to independent variables such as different products/systems, changes to existing products, amount of experience with a product/system, user personality, application type, and platform type (phone vs. tablet) (Lewis, 2018).
Additionally, 25% of the individual SUS scores (ranging from 55 to 95) were below the median score. As such, the variability between end-users must be taken into consideration upon the interpretation of these results. Nevertheless, the variability between individual scores is corroborated by the literature since usage behaviour is affected by the characteristics of the health intervention and the personal characteristics of its users (Kim & Han, 2021).
The Web Platform was proposed as a useful resource for telerehabilitation. The need for telehealth options in rehabilitation have been highlighted since the beginning of the COVID-19 pandemic. A study engaging 19 PwPD of an in‐person community rehabilitation program
assessed the feasibility of an asynchronous telemonitoring exercise program delivered by video, twice a week for 24 weeks. Results suggest the program was safe, showed moderate adherence, and those exercising in the presence of their caregiver had higher attendance rate (Torriani-Pasin et al., 2022). As such, these results not only stress the role of social support on adherence, but also make ground for using telerehabilitation as a resource to deliver safe and effective exercise programs. Patient safety was highlighted by physiotherapists as a major concern for unsupervised exercise training. As such, there are risks that must be carefully considering when prescribing exercise for PwPD, especially when it is home based, of higher intensity and with minimal supervision. The main concerns are musculoskeletal injuries, cardiac events, and falls (van der Kolk et al., 2019). Identified strategies to enhance patient safety include exercising within a space with minimal environmental barriers, gathering the necessary equipment before initiating the training program, having a chair nearby in case the patient needs to rest and recommending supervised practise when suitable. Additionally, although participants reported health benefits and positive experiences with the telerehabilitation program, most prefer an in‐
person program (Torriani-Pasin et al., 2022). This is relatable to the insights of physiotherapists that some PwPD prefer exercising in a clinical setting and thus will not adhere to the ONParkinson digital solution.
As an interface aimed for exercise prescription, physiotherapists have highlighted the Web Platform as a resource to support PD management, which is reinforced by key aspects identified in the literature. Physiotherapists contribution to ascertain sustained behaviour change for PwPD through the features of the Web Platform can include personalized exercise prescription, drawing programs based on activities reflecting preferences and capabilities of PwPD, engaging in collaborative goal setting, and providing regular performance feedback and positive reinforcement (Speelman et al., 2014). Additionally, physiotherapists must reinforce the target behaviour by providing patient education, to manage expectations and inform about the risks and benefits of exercising regularly (Collado-Mateo et al., 2021). The informative component will also be addressed in the future through the FAQs section of the App, written by a group of expert physiotherapists. Nevertheless, recommendations for implementing behaviour change based interventions comprise improving the education of physiotherapists as to behavioural theories, formulate specific examples of exercise goals and being more attentive to
patients with co-morbidities, cognitive dysfunction and a lack of motivation (Speelman et al., 2014). These derived from the evaluation of the implementation of the ParkFit program, a multifaceted intervention grounded on the SCT that aimed to induce a lasting change in exercise behaviour, which was evaluated on a two-year randomized controlled trial including 586 sedentary PwPD (van Nimwegen et al., 2013). Attending to the similarities between the study population and the behavioural approach underpinning intervention design with the current study, recommendations can be acknowledged for implementation of the ONParkinson digital solution.
Current policies and practices of rehabilitation settings were considered an obstacle for broader implementation of the ONParkinson digital solution. Thus, stakeholders must be involved in addressing these barriers since physiotherapists are remarkably well positioned to meet the needs of people with chronic diseases (Ellis & Motl, 2013). Additionally, adherence of physiotherapist to the Web Platform can be hindered by the initial time investment to familiarize with the exercise database and the features of the platform. This aligns with the identified need for a minimalistic and visually appealing design and the recommendation to improve usability for modifying features to make user interaction less time consuming. These barriers must be addressed since the exercise module of the ONParkinson platform will not be viable without the involvement of physiotherapists, by engaging in exercise prescription for their patients through the Web interface.
Feedback and acceptability of the Mobile App
The current study was drawn on recommendations for future research identified in the usability study of the first version of the ONParkinson Mobile App prototype, comprising the development of the prototype based on recommendations provided by end-users, while continuing to gather feedback by assessing the exercise module with the end-users. The usability study included 14 participants from APDPk (5 PwPD, average age of 64 ± 5.92; 5 caregivers; 4 health professionals). The mean SUS score of 84.4 (A grade) was above the expectations, which may have been related to the purposive sampling. Nevertheless, one PwPD obtained a SUS score of 65.0 points and a caregiver obtained 55.0, which was expected considering the older mean age of the dyad, lower level of smartphone usage and functional limitations of PwPD. This study
suggested high acceptance of the ONParkinson Mobile App by the end-users and proposed recommendations to enhance its usability, hoping to improve user experience and engagement of end-users (PwPD and their caregivers) (Madeira et al., 2018).
The current study did not aim to re-evaluate the usability of the Mobile App, since previously identified recommendations for improvement had not fully been implemented.
Nevertheless, results from the questionnaire and interviews suggest positive remarks on subjective measures of usability, which are related to user satisfaction and comprise perceived ease of use and perceived usefulness (Brown et al., 2013).
The features of the Mobile App were grounded on the evidence for developing mobile apps to support behaviour change on PD (Ellis et al., 2019), and were suggested to be relevant for greater adherence. Its features include goal setting (progress, usefulness, awareness), provision of feedback to reinforce positive behavioural change, frequent adjustment of personalized programs, and continuous connection with health professionals to ensure remote help (Ellis et al., 2019; López-Jaquero et al., 2019). Additionally, participants recommended adding rhythmical cues and including photos of the exercises as a complement to its description.
Barriers to engage in exercise reported by PwPD include lower limb muscle fatigue, preference for sedentary activities, and the closing of the training facilities caused by COVID-19. Additional barriers include non-motor symptoms of PD, personal beliefs of low self-efficacy and low outcome expectations, lack of accessibility and financial burden (Schootemeijer et al., 2020; Zaman et al., 2021). As such, a mHealth approach grounded on behavioural theory and including digital behaviour change interventions can potentially address some barriers for exercise by delivering personalized solutions to influence complex and challenging health behaviours (Michie et al., 2017). This approach can support self-management, while improving safety, autonomy, and empowerment of users, being particularly advantageous in remote areas, for PwPD with limited mobility and older adults (Madeira et al., 2017). Nevertheless, user retention in mHealth apps is low. Thus, addressing this issue can yield significant impact on the effectiveness of health interventions, which is highly dependable on its continuous and regular use (Kim & Han, 2021).
The decline of motivation related to the progressive nature of PD was reported as barrier for regular app use. Additional barriers reported in the literature for using mHealth apps comprise lack of time, support, guidance or resources, and unclear information (López-Jaquero et al., 2019). Conversely, social support was suggested to improve adherence, which aligns with the current evidence, stressing that social engagement and social support (eg.: engaging in supervised exercise practise) may enhance motivation and subsequently promote sustained adherence (Collado-Mateo et al., 2021; Zaman et al., 2021). Additionally, engaging the dyad in exercise may decrease the prevalence of comorbidities related to physical inactivity.
Physiotherapists have suggested that a low level of digital health literacy can be a barrier for regular use of the Mobile App. Conversely, some PwPD have considered the app a useful resource to enhance digital health literacy. These insights may align with the literature regarding perspectives of patients regarding the use mHealth apps, enabling physiotherapy interventions to be integrated into everyday life, allowing greater flexibility, adaptability, and relevance to the individual (Ellis et al., 2019). As such, this perceived barrier may be addressed attending to the role of the physiotherapist on promoting sustained behaviour change by providing patient education on mHealth technologies and the characteristics of the ONParkinson Mobile App.
A study examining the use of mHealths apps by older adults has found health technology self-efficacy, self-evaluative outcome expectations and self-regulation as significant determinants for regular use (Kim & Han, 2021). Considering the study population (mean age of 67 years, ranging from 60 to 79), these findings could resonate to PwPD included in the current study (mean age of 65.75±8.63). Outcome expectations, beliefs of PwPD on the benefits of exercise, were suggested to improve adherence to the target behaviour. Thus, addressing SCT constructs of self-regulation and outcome expectations along with self-efficacy, can positively influence engagement of future users with the ONParkinson Mobile App.
This thesis assessed the features of the Conversational Agent for answering questions related to the current exercise program. The mean score for the 12 questions was 4.42 ± 0.79 out of a 5-point Likert scale based on strength of agreement, thus suggesting high acceptability from end-users. Nevertheless, difficulties were reported with voice and text recognition.
Additionally, PwPD needed to know what sorts of questions they could expect a correct answer
from the CA. The first report of using a CA on PwPD suggested it could be used to measure voice and communication outcomes, gathering information about challenges encountered, and provide education and support to the user (Ireland et al., 2015). Nevertheless, current literature reporting the design and use of CAs for rehabilitation for adults with brain-related neurological conditions is heterogeneous and represents early stages of conversational agent development and testing (Hocking et al., 2023). The remaining modules of the motivational component (provided by the reminders for exercise programs and motivational messages) will be addressed in future stages of the project. Furthermore, the variability of the mean scores per participant suggest that the results from this evaluation may not only be affected by the features of the CA, but also by the variability among end users, which is aligned with the literature on characteristics of health interventions (Kim & Han, 2021).
According to the insights provided by participants, the Mobile App is expected to reinforce adherence to the target behaviour of sustained exercise practise, by addressing cognitive and behavioural aspects through its the features, alongside the motivational component embedded in the CA, thus supporting PD management.
Limitations
This study presents limitations regarding sample size, due a short recruitment period, resulting in few participants. This issue can be addressed in future studies by conducting a broader and more comprehensive recruitment process. Additionally, inviting participants from previous stages is consistent with the principles underpinning an iterative design process, allowing an increasing number of potential end-users that test and evaluate the intervention.
Furthermore, considering the aim of the digital solution for supporting PD management by the triad, the lack of available caregivers to participate in this study may have limited the process of gathering feedback on the Mobile App, which is the interface that caregivers will eventually use to provide assistance to PwPD on their exercise programs and PD management.
Regarding data collection procedures, using self-reported measures could have resulted in socially desirable answers. Physiotherapists answered the SUS through Google Forms, but the questionnaire for the Mobile App was filled trough interview by the researcher. Despite this limitation being partially addressed by assuring answer confidentiality, the questionnaire could
have been handed in paper format for PwPD to answer themselves. Social desirability bias is inherent to self-reported instruments; thus, this limitation could have been addressed by also using objective outcome measures, such as performance indicators for the components of the digital solution (eg.: success rate on completing required tasks). Additionally, only four out of eight PwPD that tested the Mobile App were interviewed since the remaining tests were carried out by members of the research team who did not receive training to conduct interviews.
Furthermore, there was a need to adjust the study procedures considering the delays that occurred that affected the defined milestones. As such, the final stage of the development phase was not included due to time constraints. Workshops would have been conducted to gather feedback on the Mobile and Web interfaces after conducting changes informed by previous results. The addition of advanced functionalities to the digital solution for targeted gamification and biometric data reading devices would have been discussed. Workshops aim to provide a codesign environment for undergoing group exercises to ameliorate obstacles in design, assuring it targets the needs of end-users, by conducting whole group discussions, guided by semi-structured questions and previous findings, while interacting with prototypes of the mobile and web interfaces, and a list of potential ideas and mockups (Ozkaynak et al., 2021).