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Impact of Mechanical and Electrical Tilting for Cellular-Connected Drones and Legacy Users
No full textDrones, also known as Unmanned Aerial Vehicle (UAV)s, have lately been employed for a variety of tasks in our daily lives, including surveillance, delivery, and rescue operations. High-performance, dependable two-way communication with cellular networks is necessary to expand UAV applications quickly. Supporting different UAVs into current fifth generation (5G) networks is challenging. One of these challenges comes from ground and aerial users having different channel properties. This thesis investigates how the performance of
cellular-connected UAVs and legacy ground users in a cellular network can be improved by changing the antenna tilting angle or type, and we will consider mechanical, electrical, and hybrid tilting in the system. This study considers the case of single user Multiple-Input Multiple-Output (SU-MIMO) system featuring Uniform Linear Array (ULA) or Uniform
Planar Array (UPA) antenna system with Third Generation Partnership Project (3GPP) parameters. This study illustrates the impact of antenna tilting in improving user throughput, making it easier to integrate UAVs into 5G and future networks. These conclusions are supported by simulation results, which also show how hybrid tilting may be used as a scalable way to enhance multi-user performance for next-generation networks
Imagery and Music Performance Anxiety in Elite Musicians
No full textMany musicians experience music performance anxiety (MPA) regardless of their level of expertise (Fernholz et al., 2019) and based on the level of distress and impairment it causes, MPA can be diagnosed as performance-only social anxiety disorder (SAD) (American Psychiatric Association, 2022). However, important phenomena theorized to fuel social anxiety, such as negative spontaneous self-imagery (NSI), have not been studied in musicians or integrated into existing MPA theory which might limit our conceptualization and treatment of this concern. Due to the distress and impairment associated with MPA, different treatments have been developed, many of which integrate intentional mental imagery manipulation to ameliorate anxiety (e.g., relaxation imagery). However, it is difficult to draw a clear picture regarding whether certain approaches (e.g., relaxation imagery) are more helpful than others due to
methodological limitations of existing imagery-based MPA intervention research. Importantly, little is known about how musicians engage in mental imagery to manage MPA independent of existing intervention research, which could guide future imagery-based MPA research (e.g., examination of commonly used approaches). Thus, we conducted a series of studies to extend our understanding of musicians’ experiences along the imagery continuum (i.e., spontaneously experienced to intentionally generated) as they relate to MPA to inform future MPA theory, research, and treatment.
In Chapter 1, we followed elite musicians (N = 40) for 7 days leading up to an important anxiety-provoking performance of their choice. After completing an initial battery of questionnaires including a measure of trait MPA, musicians completed nightly measures of NSI and state MPA. We theorized that similar to those with SAD, musicians would experience NSI related to musical performances, and that this phenomenon would be positively associated with the intensity with which musicians experience trait and state MPA. Consistent with our predictions, we found that NSI was highly prevalent amongst elite musicians. At the between-person level, musicians who experienced more frequent NSI also had higher trait MPA and state MPA intensity. Multi-level analyses further allowed us to explore the association between NSI and state MPA intensity at the within-person level amongst those who experienced NSI, and we found that state MPA intensity was significantly higher on days where musicians experienced NSI compared to days when they did not.
Building on these findings and using the same methodology and participant data, Chapter 2 investigated the association between NSI and additional variables important to the conceptualization of MPA, including state MPA interpretation (i.e., whether musicians interpret anxiety as helpful or harmful to performances) and self-confidence. Contrary to our hypotheses, we did not find an association between NSI and these variables at the between-person level. However, on average within-person, we found that self-confidence was significantly lower on days where musicians experienced NSI than on days when they did not, although a similar association did not emerge between NSI and state MPA interpretation. Taken together, Chapters 1 and 2 indicate that cognitive theoretical models of SAD may be more applicable to MPA than previously thought (Osborne & Franklin, 2002), as an important phenomenon theorized to fuel social anxiety is associated with increased state MPA intensity and decreased self-confidence in anticipation of important anxiety-provoking performances. Further, similar to those with other forms of social anxiety, musicians experiencing MPA may benefit from imagery-enhanced cognitive behavioural therapy for SAD which specifically targets NSI to ameliorate anxiety.
In Chapter 3, we turned our attention to the use of intentionally generated imagery to manage MPA. To lay important groundwork for future research, Chapter 3 investigated how elite musicians (N = 25) employ mental imagery to manage MPA, and whether they experience difficulty controlling such imagery through a semi-structured interview and Likert-style rating scales. Thematic analysis revealed that musicians engage in a variety of imagery approaches (e.g., mental rehearsal, relaxation) to manage MPA, several of which are similar to approaches in existing intervention research. Although musicians reported a high degree of overall control of intentionally generated imagery to manage MPA, themes emerged regarding difficulties which musicians experience controlling such imagery. Thus, our findings have implications for future MPA research, as well as clinical implications regarding the use of mental imagery to manage MPA.
We conclude with a summary of our results, provide an overview of clinical implications of our novel findings, outline limitations of our program of research, and suggest directions for future research in this important area
Cyclicité de la crise dans le roman abitibien : Jocelyne Saucier, Louis Hamelin, Biz
No full textDans le sillage des théories de Naomi Klein (La doctrine du choc, 2007) et de David Harvey (L’énigme du capital et les crises du capitalisme, 2010), cette thèse analyse les cycles de boom and bust qui caractérisent le capitalisme en général, mais dont les conséquences sont souvent démultipliées dans des contextes de régions marginalisées et donc plus vulnérables comme l’Abitibi. Je retrace les représentations des effets de cette cyclicité économique à travers trois romans qui caractérisent l’Abitibi au cours du siècle dernier : Jeanne sur les routes (2006) de Jocelyne Saucier, Autour d’Éva (2016) de Louis Hamelin et Mort-Terrain (2014) de Biz. En effet, la longue histoire des opérations minières dans la région a produit un contexte idéal pour l’utilisation de récits de crise. Mes recherches mettent l’accent sur les caractéristiques historiques et géographiques de l’Abitibi, notamment sa position frontalière au Québec.
Les divers types de distance créés par ces circonstances placent la région en position de faiblesse face aux forces puissantes qui agissent sur elle. Les récits sur la récurrence des crises économiques sont utilisés pour justifier la mise en œuvre de mesures d’austérité au nom d’une plus grande centralisation économique. Dans son ensemble, le corpus dépeint le déclin à long terme de la région tout en soulignant les circonstances particulières des périodes clés. Par ailleurs, chacun des trois romans éclaire une dimension sociopolitique différente. L’univers de Saucier met l’accent sur les considérations de solidarité ouvrière et suggère un parallèle entre idéologie politique et religieuse. Le roman de Hamelin propose des descriptions étoffées de l’environnement naturel et met en scène un conflit entre les partisans du développement touristique et les partisans de la préservation, tandis que Mort-Terrain de Biz met en lumière la façon dont la santé publique est liée aux questions économiques
Inclusivity in Communication: Exploring Social Robots for Cultural Integration and Stuttering Therapy
No full textCommunication is fundamental for humans to exchange ideas, interact, and collaborate. These factors make it important to explore human-robot interactions through the lens of effective communication. This work explores inclusivity from two key dimensions: cultural integration and speech impairments.
Human-robot interaction (HRI) research has increasingly recognised the influence of culture on human-robot interactions, highlighting both the opportunities it brings and the need for careful consideration due to the evolving nature of cultural dynamics. In an online study with 103 participants, we explored how preferences for cross-cultural greetings performed by a humanoid robot change based on a restaurant theme. We examined factors influencing these preferences by analyzing two groups who experienced different ethnic greetings. We studied how ethnicity, percentage of life lived in Western countries, personality characteristics, and implementation of cultural aspects influenced the likability of a robot’s greeting gestures.
In the context of speech impairments, the use of social robots in clinical settings for stuttering therapy of preschoolers by Speech-Language Pathologists (SLPs) remains a relatively unexplored area. To help HRI researchers explore this field, we identified potential applications of social robots for stuttering therapy. We discussed key considerations for these interactions by conducting interviews and shadowing sessions with two SLPs. The results suggest practical applications and interaction and communication design considerations for integrating social robots into speech therapy sessions for preschoolers who stutter. Key applications for social robots include engaging children through various games and providing a consistent speech model, among others. Essential properties of interaction design for sessions include being interactive, structured, and supervised by SLPs. Additionally, the robot’s communication could involve slow, relaxed, personalised speech and other techniques to support children’s speech goals.
Following recommendations from a handbook on stuttering and SLPs, we explored an application area focused on slow and relaxed speech that is to be used by parents and caregivers of children who stutter. As a first step and proof-of-concept, I carried out an HRI study with university students. I designed two sessions with four and five tasks, collecting natural speech samples from 63 participants across different verbal tasks. Throughout the interactions, the voice system (two conditions: the robot speaking or the same voice coming from a laptop) maintained a slow speech. I report our results on which kind of tasks had more impact on participants’ speech and the difference in participants’ speech metrics in the two sessions. People with different English language-related self-reported factors also showed varied patterns in adapting to the Voice System’s slow speech, showcasing the need for customised implementations in the future.
This work contributes to HRI by highlighting the challenges of developing culturally adaptive robots and providing design considerations for using social robots in stuttering therapy for preschoolers. By studying speech entrainment through a Voice System exhibiting slow speech, we explored how different verbal tasks influence entrainment levels, with potential future applications in training parents and caregivers of children who stutter
A Broken History: Examining the Events, Experiences, and Narratives of the High Arctic Relocations, 1950-2010
No full textIn 1953, the Canadian government moved thirty-five Inuit from Inukjuak in Northern Québec to the High Arctic with promises of better hunting opportunities and the ability to return to their communities within two years if conditions were not to their liking. Two years later, twenty-nine additional Inuit were sent to join them. Since these High Arctic Relocations, government officials, lawyers, and academics have questioned the federal government’s motivations for and responses to the relocations, focusing on the question of whether the government was justified in undertaking an ill-fated humanitarian mission or if the government coerced Inuit into staking Canadian claims to the Arctic.
This dissertation explores the legacy and ongoing influence of the relocations in Canadian history by tracing the documentary, experiential, and political narratives surrounding the High Arctic Relocations from the 1950s to the 2010s. This includes critically re-examining the archival evidence from the 1950s; analyzing Inuit testimony of experiences and contemporary storytelling about the relocations; and examining Inuit, government, and academic political narratives from the 1980s through the 2010s. By examining the narratives of the High Arctic Relocations and framing these narratives using the event, experiences, and memory of relocation over the course of seven decades, this study parses the evolving themes and foci as Inuit struggled to secure recognition and compensation for their suffering. This dissertation re-assesses the government’s motivations for relocating Inuit in the early 1950s and includes analysis of the complexities and limits of government decision-making. It also explores the effects of those decisions on Inuit relocatees through an examination of remembered experiences in the 1990s. Finally, this dissertation analyzes the academic and government framing of the narratives of relocation since the 1990s, investigating how these narratives affect contemporary perceptions of government actions.
This dissertation demonstrates that the intentions of government officials in the 1950s (the event) and vigorous debate about the perceived motivations of government have superseded the outcomes (experience) of the relocations. This evolving discourse has produced generally-accepted conclusions in Canadian history about the alleged motivations for the relocations that find little grounding in the archival record but which have become a key part of the meta-narrative about state sovereignty, deceit, and coercion in the twentieth century Canadian Arctic
Assessing Cervical Spine Response to Head-First Impact Using Vertebral Segments, Head-Neck, and Full-Body Computational Human Models
No full textHead-first impact (HFI), which can occur in automotive rollovers and sports collisions, is associated with a high risk of cervical spine injury. Cervical spine injuries from HFI such as fracture-dislocations frequently lead to severe spinal cord injuries and in some cases death, as reported in field data and epidemiology. Experimentally, isolated motion segments have been tested in compression and bending to mimic loads incurred in HFI, while cadaveric head and necks with torso surrogate masses (TSMs) and full body (FB) cadavers have been inverted and dropped to investigate HFI. However, isolated segment tests are limited in producing the complex kinematics of HFI, and TSM response has not been quantified with respect to FB testing. Recently, computational human body models (HBMs) have been developed to simulate humans in injurious loading conditions, but have only seen limited application in HFI.
In this study, computational models were applied to investigate HFI, using an isolated vertebral segment model, an isolated head and neck with a TSM, and a contemporary FB human model. First, an existing and validated cervical motion segment model was loaded in combined compression and flexion relevant to HFI, to investigate the loads and moments associated with fracture-dislocation failures. Next, TSM and FB head-first impacts were modelled using a contemporary HBM in three postures (flexed, neutral, extended) at three impact velocities. Finally, the FB model was compared with a unique set of experimental full body cadaver HFI tests.
In isolated segment loading, combined compression and flexion produced hard tissue failure patterns reported in fracture-dislocations. Fracture-dislocation was achieved by simultaneously rotating and translating the superior vertebra anteriorly. Comparing the isolated head and neck TSM and FB models, the TSM condition demonstrated higher neck forces, internal energy, and a larger volume of hard tissue failure compared to the FB models under the same impact conditions. Despite similar head contact forces between TSM and FB, the compliant thorax of the FB model reduced the neck forces by half, which significantly reduced corresponding energy stored in the neck tissues. The neutral and extended neck postures predicted higher neck forces due to facet joints engaging, while neck flexion in the flexed posture reduced neck forces by misaligning the spine from the impact. Finally, it was found that the FB model had similar head impact forces and comparable T1 rotation to cadaveric HFI experiments, but a high sensitivity to initial posture was identified.
This study identified forces and moments that can create a fracture-dislocation in a motion segment using prescribed boundary conditions. The TSM and FB simulations demonstrated compression loads and moments of a similar magnitude to the motion segment, but differed in timing, generating higher axial loads leading to the onset of fracture in the spine. The neck loads were higher using the TSM boundary condition compared to the FB condition. Both TSM and FB models identified the importance of neck posture on response, showing that an initially extended neck posture leads to higher neck forces compared to a flexed posture. This study identified the importance of full body boundary conditions for the simulation of HFI, the complex dependency of kinematic and kinetic response on neck posture, providing model results in agreement with the small number of full body experiments. Further experimentation was recommended to provide detailed measurements necessary for model assessment and validation. Future computational studies will integrate the motion segment and FB results to improve the understanding of fracture-dislocation
Harnessing Exosomes from Human Dermal Fibroblasts and Pirfenidone-exosomes as Innovative Strategies for Scarless Tissue Repair in Wound Healing
No full textThe wound healing process often leads to scar formation that can negatively affect patients both physically and psychologically. The management and treatment of scars also place a considerable financial burden on healthcare systems. Significant efforts are being made to improve wound healing outcomes by accelerating closure while simultaneously minimizing scar formation. To facilitate scarless wound healing, developing an anti-scarring treatment that modulates dermal fibroblast activity is a promising strategy, with pirfenidone (PFD) showing potential due to its anti-fibrotic properties by targeting intracellular pathways that regulate collagen disposition. PFD, particularly when delivered via dermal fibroblast-derived exosomes, may further enhance therapeutic effectiveness and promote scarless healing.
To achieve this goal, we began by isolating high-purity exosomes from in vitro cultured human dermal fibroblasts. Two common isolation methods—PEG precipitation and affinity-based techniques—were compared to identify the most efficient approach for obtaining high-purity and relatively homogenous exosomes. A range of characterization techniques, including transmission electron microscopy (TEM), atomic force microscopy (AFM), antibody arrays, and enzyme-linked immunosorbent assays (ELISA), confirmed the successful isolation of high-purity exosomes. The affinity-based method demonstrated superior performance, yielding well-dispersed and highly pure exosomes. Due to the difficulties in achieving efficient drug encapsulation in exosomes, the following chapter specifically focused on the encapsulation and formulation optimization of the antifibrotic compound PFD and explored the use of exosomes as a drug delivery platform. We optimized an active drug loading method using sonication to enhance encapsulation efficiency (EE%) and loading efficiency (LE%), ensuring that careful control of the sonication process maintained exosome integrity. The optimal formulation of PFD-exosomes achieved an EE% of 11.14% ± 1.27% and an LE of 10.01% ± 1.03%, with a particle recovery rate of exosomes at 64.21% ± 8.49%. Then, we investigated how to harness exosomes from dermal fibroblasts and PFD-exosomes as innovative strategies for achieving scarless tissue repair in wound healing. Our findings showed that exosomes enhanced fibroblast migration and proliferation through an autocrine mechanism, highlighting their potential as a stand-alone cell-free therapy for wound healing. Additionally, this study was ground-breaking in demonstrating that exosomes can improve the efficacy of PFD as a drug carrier, amplifying its anti-fibrotic effects in both in vitro and in vivo models. The in vivo results indicated that PFD-exosomes accelerated wound healing while organizing the extracellular matrix (ECM) by reducing excessive collagen deposition. Overall, PFD-exosomes present an innovative strategy for pre-scarring interventions, offering benefits of enhanced wound healing outcomes while minimizing scarring
A High-Order, Flow-Alignment-Based Compartmental Modelling Method
No full textIndustrially-relevant chemical engineering processes, such as stirred tank bioreactors in the pharmaceutical sector, inherently operate across multiple scales and involve complex, multiphysics, and multiphase interactions. Modelling of these systems is essential for their design, optimization, control, and operational troubleshooting; these processes are often too intricate for experimental approaches alone, with trial runs proving prohibitively costly or key metrics being difficult or impossible to measure. Traditionally, modelling such systems has relied on simplified design equations or idealized models, such as the continuously stirred tank reactor (CSTR). However, these approaches lack the explanatory power required to capture real-system outcomes, such as concentration gradient formation. With advancements in computational capabilities, computational fluid dynamics (CFD) simulations have become standard for investigating specific questions within these systems. Nonetheless, certain critical applications, such as extended simulations of microorganism growth or real-time predictive control, remain impractical due to their high computational demands.
Reduced Order Models (ROMs) offer a middle ground between the simplistic CSTR models and the computationally intensive CFD simulations. ROMs trade off some of the generality and accuracy of CFD simulations in exchange for a substantial reduction in computational cost, often by several orders of magnitude. This work focuses exclusively on a specific type of ROM: Compartmental Models (CMs). They are underpinned by the assumption of one-way coupling between the hydrodynamics and mass transport of reactive species. CMs are constructed through a two-step process. First, the domain is divided into non-overlapping compartments using a set of criteria; next, each compartment is represented by one or more simplified models. This network of models decouples mass transport from hydrodynamics and reduces the number of degrees of freedom on which the conservation of mass of the reactive species needs to be solved. This reduction is particularly important for bioreactors, where hundreds of coupled nonlinear reactions are common.
Current compartmental modelling methods exhibit several limitations, such as a disconnect between the criteria used for compartment identification and their subsequent modelling, an assumption that each compartment is well-mixed, a reliance on manual compartmentalization or manual intervention, and a non-prescriptive framework that is challenging to adapt to new geometries. This work introduces a novel compartmental modelling method based on flow alignment. The velocity field is analyzed and split into compartments within which the flow is unidirectional. Each compartment is then modelled as a series of 1D Plug Flow Reactors (PFRs). Benchmarking this method against the state-of-the-art method demonstrates that it yields more accurate results while achieving computational speeds that are orders of magnitude faster than traditional CFD simulations.
Further, many current CM approaches simplify three-dimensional geometries by either modelling two-dimensional cross-sections and relying on rotational symmetry or by using a uniform grids of compartments.
The developed method is extended to fully three-dimensional two-phase stirred tank systems without using these assumptions. It successfully compartmentalizes the distinct recirculatory regions generated by the impellers, eliminating the manual ad hoc intervention required by past methods. Mixing time and concentration predictions at probe locations are validated against CFD simulations, other CMs, and experimental data. The proposed general method performs as well or better than past CMs which were tailor made for the stirred tank geometry. Further, the model's capability to handle complex spatially varying reactions is demonstrated by simulating oxygen dissolution into the liquid phase, accurately capturing spatial gradients in dissolved oxygen concentration.
Lastly, a significant limitation in previous compartmental modelling work is the reliance on a single velocity snapshot or a time-averaged steady-state velocity field. For instance, in the case of vortex shedding from a cylinder in the laminar flow regime, neither time-averaged velocity-based CM nor an ensemble of CMs based on discrete velocity snapshots accurately captures the impact of the inherently non-stationary flow topology. The non-stationary nature of such flow fields is addressed by employing projection mappings to cycle through a series of compartmental models, allowing dynamically updating their shape, number, location, and connections. This approach successfully captures the oscillation period of the flow and demonstrates promise in representing non-stationary flow behaviours accurately.
In summary, this work advances the field of compartmental modelling by unlocking their the application to complex, industrially-relevant systems by developing a generalized, alignment-based method. This method extends the capability of CMs to handle both time-varying and fully three-dimensional multiphase flows without requiring manual intervention. The approach is validated through benchmarking against CFD simulations, other CM approaches, and experimental data, demonstrating improvements in computational efficiency and accuracy
WCET Preserving Memory Management for High Performance Mixed Criticality Systems
No full textThis thesis explores innovative memory and cache management mechanisms for mixed-criticality systems that aim to improve the performance of the system while maintaining its predictability. We consider mixed-criticality systems where requestors may issue latency-critical (LTC) and non-latency-critical (NLTC) requests. LTC requests must adhere to strict latency bounds imposed by safety-critical applications, but timely servicing NLTC requests is necessary to maximize overall system performance in the average case. In this thesis, we focus on addressing the challenges of processing LTC and NLTC memory requests in mixed-criticality systems and the limitations of existing cache management mechanisms designed to improve the system's average performance. Accordingly, we introduce two key contributions: one at the memory arbitration level and the other at the cache controller level.
In the first contribution, we propose DAMA, a dual arbitration mechanism that imposes an upper bound on the cumulative latency of LTC requests without unduly impacting the performance of NLTC requests. DAMA comprises a high-performance arbiter, a real-time arbiter, and a mechanism that constantly monitors the cumulative latency of requests suffered by each requestor. DAMA primarily executes in high-performance mode and only switches to real-time mode in the rare instances when its incorporated mechanism detects a violation of a task's timing guarantee. We demonstrate the effectiveness of our arbitration scheme by adapting a predictable prefetcher that issues NLTC requests and attaching it to the L1 caches of our cores. We show both formally and experimentally that DAMA provides timing guarantees for LTC requests while processing other NLTC requests. Our evaluation demonstrates that with a negligible overhead of less than 1% on the cumulative latency bound of LTC requests, DAMA can achieve an equivalent average performance to a prefetcher that processes requests under a high-performance arbitration scheme.
In the second contribution, we introduce a novel hardware mechanism at the cache controller level that leverages the LRU age bits to perform duration-based cache locking. Our proposed mechanism dynamically locks and unlocks cache lines for different durations at run-time, without the need to modify the program's code. We further devise a heuristic that analyzes a program's loop structure and selects the set of addresses to be locked in a L1 instruction cache alongside their locking durations. Evaluation results show that our duration-based locking mechanism significantly reduces initialization overhead and eliminates the need for program code modifications. The proposed mechanism achieves a performance comparable to the dynamic approach, which adjusts locked program content at runtime
Exploring the Exercise and Physical Activity Experiences of Adults with X-Linked Hypophosphatemia
No full textBackground: X-linked hypophosphatemia (XLH) is a rare hereditary phosphate-wasting disorder, marked by mutations in the PHEX gene on the X chromosome. Mutations result in renal phosphate wasting and decreased 1,25-dihydroxyvitamin D, leading to rickets in children and osteomalacia in adults. XLH contributes to significant physical impairments including lower limb deformities, reduced height, bone pain, stiffness, early osteoarthritis, and fractures, which collectively hinder mobility, physical functioning, and quality of life. Despite pharmaceutical treatments, mobility and physical functioning deficits remain inadequately addressed. Currently, there is not a strong understanding of how physical activity and exercise can affect health outcomes for people with XLH. XLH brings unique challenges to mobility and physical functioning which could bring its own barriers to exercise making it an important topic to explore to create interventions for the XLH population.
Objective: The objective of the study was to understand the experiences of people with XLH when participating in physical activity and exercise. I looked to identify how having XLH affects participation in physical activity and exercise, the barriers to and facilitators of exercise and physical activity, and the health outcomes that are most important for people with XLH when making treatment decisions with medications, and exercise.
Methods: Using a phenomenological approach from a post-positivism point of view, semi-structured interviews were conducted with adults diagnosed with XLH. The interview guide was designed using the COM-B model of behavior to reveal how capability, motivation and opportunity affects people with XLH’s exercise and physical activity behaviors. Data was analyzed using reflexive thematic analysis to understand the experiences during exercise and physical activity, the barriers to and facilitators of exercise, and the outcomes prioritized by participants. A content analysis was done to understand the most frequent modes of exercise being completed, and the patient important outcomes most prioritized to participants.
Results: Semi-structured qualitative interviews, and two content analyses with 17 adults who have XLH were conducted. Pain, stiffness, and fatigue were identified as major barriers to both a person with XLH’s capability and motivation to participate in exercise and physical activity. Pain and stiffness created mobility limitations challenging a person’s capability. Fatigue and overexertion led to increases in pain and stiffness. The exacerbation of pain and stiffness from fatigue led to a fear of worsening symptoms affecting people’s reflective motivation to exercise. While fatigue worsens symptoms and discourages activity, participants described that when they were able to find the right balance of physical activity and exercise with rest they found improvements in pain, stiffness, mobility and overall physical functioning. Walking, stretching, swimming/water aerobics and strength training were completed most frequently by participants. Key facilitators to exercising were strategizing movement to manage fatigue, and tailoring exercise for mobility impairments.
The study also highlights the importance of identifying patient important outcomes. Similar outcomes were identified for treatment with medications and exercise (pain, fatigue, strength mobility and physical functioning). But physical functioning and its individual components, such as strength, were more highly prioritized for exercise, versus pain for treatment with medications. Regardless of the context, improving functional outcomes and progression of the disease in the long-term was of the highest priority.
Conclusion: While pain, stiffness, and fatigue pose substantial barriers to motivation and capability to participation in physical activity and exercise, the findings reveal that appropriately tailored and balanced exercise can lead to improvements in physical functioning, mobility, and symptom management. Participants emphasized the need for tailored approaches that account for their unique physical limitations, and for the management of fatigue. Crucially, the study underscores the significance of centering interventions around patient-prioritized outcomes which are often underrepresented in current clinical approaches. The findings lay the foundation for developing informed, person-centered physical activity guidance and exercise interventions that address both the physical and psychological challenges of living with XLH, ultimately aiming to improve quality of life and long-term health outcomes