Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome

Davies, Tabby; Jones, Simon L. Peyton; Kelly, Ryan

doi:10.1145/3290605.3300452

Cited by 14 publications

(8 citation statements)

References 67 publications

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“…I feel guilty when I get reminders to try get my steps goal, and I can't because I'm in too much pain" (P62). These findings overlap with previously reported adverse effects of goal-driven self-tracking for certain chronic health conditions [22].…”

Section: Theme 1: Condition Severity and Emotional Impactssupporting

confidence: 74%

“…Self-tracking provides opportunities for easier, more frequent and more accurate collection of data that can support clinical decision-making and self-management of health conditions. Recent studies have highlighted the utility of self-tracking data in the management of chronic conditions such as Irritable Bowel Syndrome [17,38], Parkinson's Disease [51], HIV [76], Migraine [66] and ME/CFS [22].…”

Section: Introductionmentioning

confidence: 99%

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Determinants of Longitudinal Adherence in Smartphone-Based Self-Tracking for Chronic Health Conditions

Jones

Hue

Kelly

et al. 2021

Proc. ACM Interact. Mob. Wearable Ubiquitous Technol.

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The use of interactive mobile and wearable technologies for understanding and managing health conditions is a growing area of interest for patients, health professionals and researchers. Self-tracking technologies such as smartphone apps and wearable devices for measuring symptoms and behaviours generate a wealth of patient-centric data with the potential to support clinical decision making. However, the utility of self-tracking technologies for providing insight into patients' conditions is impacted by poor adherence with data logging. This paper explores factors associated with adherence in smartphone-based tracking, drawing on two studies of patients living with axial spondyloarthritis (axSpA), a chronic rheumatological condition. In Study 1, 184 axSpA patients used the uMotif health tracking smartphone app for a period of up to 593 days. In Study 2, 108 axSpA patients completed a survey about their experience of using self-tracking technologies. We identify six significant correlates of self-tracking adherence, providing insight into the determinants of tracking behaviour. Specifically, our data provides evidence that adherence correlates with the age of the user, the types of tracking devices that are being used (smartphone OS and physical activity tracker), preferences for types of data to record, the timing of interactions with a self-tracking app, and the reported symptom severity of the user. We discuss how these factors may have implications for those designing, deploying or using mobile and wearable tracking technologies to support monitoring and management of chronic diseases.

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Section: Theme 1: Condition Severity and Emotional Impactssupporting

confidence: 74%

Section: Introductionmentioning

confidence: 99%

Determinants of Longitudinal Adherence in Smartphone-Based Self-Tracking for Chronic Health Conditions

Jones

Hue

Kelly

et al. 2021

Proc. ACM Interact. Mob. Wearable Ubiquitous Technol.

Self Cite

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“…For example, some menstrual tracking apps assume a pregnancy-related goal, which can be frustrating or painful for people not pursuing that goal [32]. Similarly, people with chronic fatigue syndrome often use activity tracking apps with a goal of limiting their physical activity; however, those apps generally encourage them to be more active, shaming them for activity levels that match their goals [27]. In general, domains in which people self-track for distinct purposes that require different data elements, granularity, frequency, or analysis and visualization could benefit from explicitly expressing and pursuing goals via a goal-directed self-tracking system.…”

Section: Goal-directed Self-tracking In Other Health Domainsmentioning

confidence: 99%

Examining Opportunities for Goal-Directed Self-Tracking to Support Chronic Condition Management

Schroeder

Karkar

Murinova

et al. 2019

Proc. ACM Interact. Mob. Wearable Ubiquitous Technol.

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Although self-tracking offers potential for a more complete, accurate, and longer-term understanding of personal health, many people struggle with or fail to achieve their goals for health-related self-tracking. This paper investigates how to address challenges that result from current self-tracking tools leaving a person's goals for their data unstated and lacking explicit support. We examine supporting people and health providers in expressing and pursuing their tracking-related goals via goal-directed self-tracking, a novel method to represent relationships between tracking goals and underlying data. Informed by a reanalysis of data from a prior study of migraine tracking goals, we created a paper prototype to explore whether and how goal-directed self-tracking could address current disconnects between the goals people have for data in their chronic condition management and the tools they use to support such goals. We examined this prototype in interviews with 14 people with migraine and 5 health providers. Our findings indicate the potential for scaffolding goal-directed self-tracking to: 1) elicit different types and hierarchies of management and tracking goals; 2) help people prepare for all stages of self-tracking towards a specific goal; and 3) contribute additional expertise in patient-provider collaboration. Based on our findings, we present implications for the design of tools that explicitly represent and support an individual's specific self-tracking goals.

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“…A rich body of research in interactive technology has established the value of technology and data for supporting providers at the point of care [9,108] and patients in self-managing their condition [17,37,56,60,86,96,101]. Patient-generated data can facilitate a data-driven workflow of clinical encounters [23,65,121].…”

Section: Introductionmentioning

confidence: 99%

Divided We Stand

Pichon

Schiffer

Horan

et al. 2021

Proc. ACM Hum.-Comput. Interact.

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In chronic conditions, patients and providers need support in understanding and managing illness over time. Focusing on endometriosis, an enigmatic chronic condition, we conducted interviews with specialists and focus groups with patients to elicit their work in care specifically pertaining to dealing with an enigmatic disease, both independently and in partnership, and how technology could support these efforts. We found that the work to care for the illness, including reflecting on the illness experience and planning for care, is significantly compounded by the complex nature of the disease: enigmatic condition means uncertainty and frustration in care and management; the multi-factorial and systemic features of endometriosis without any guidance to interpret them overwhelm patients and providers; the different temporal resolutions of this chronic condition confuse both patients and providers; and patients and providers negotiate medical knowledge and expertise in an attempt to align their perspectives. We note how this added complexity demands that patients and providers work together to find common ground and align perspectives, and propose three design opportunities (considerations to construct a holistic picture of the patient, design features to reflect and make sense of the illness, and opportunities and mechanisms to correct misalignments and plan for care) and implications to support patients and providers in their care work. Specifically, the enigmatic nature of endometriosis necessitates complementary approaches from human-centered computing and artificial intelligence, and thus opens a number of future research avenues.

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Patient Perspectives on Self-Management Technologies for Chronic Fatigue Syndrome

Cited by 14 publications

References 67 publications

Determinants of Longitudinal Adherence in Smartphone-Based Self-Tracking for Chronic Health Conditions

Determinants of Longitudinal Adherence in Smartphone-Based Self-Tracking for Chronic Health Conditions

Examining Opportunities for Goal-Directed Self-Tracking to Support Chronic Condition Management

Divided We Stand

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