Active Treatment to Survivorship Care: A Mixed-Methods Study Exploring Resource Needs and Preferences of Young Adult Cancer Survivors in Transition.

Purpose: The purpose of this study was to identify resource needs and preferences of young adult cancer survivors (YAs) during the transition from active treatment to survivorship care to inform tailored care tools to support YAs during this period. Methods: A mixed methods study following a sequential explanatory approach was conducted among YAs between the ages of 15 and 39. Online surveys were distributed to assess participant information and resource needs, and responses were further explored during virtual focus group and interview discussions. Frequencies and proportions were calculated to identify quantitative resource needs, and a descriptive qualitative approach was used to gather and analyze qualitative data. Results: Thirty-one participants completed the online surveys, and 27 participated in qualitative data collection. The top resource needs identified in the surveys and discussed in focus groups and interviews were (1) fear of recurrence, (2) sleep and fatigue, (3) anxiety, (4) nutrition, (5) physical activity, and (6) finances. Emergent themes identified during transcript analyses included the need for (1) tailored, customizable resources, (2) connection with other survivors, (3) tools to guide conversations about cancer, (4) clarity in what to expect during treatment and survivorship, and (5) consistent and equitable care in YA oncology. Conclusions: Participants identified six important information needs in addition to an overarching need for tailored support and equitable distribution of resources while transitioning into early survivorship. Thus, tailored interventions are needed to enhance the distribution of YA-centered resources, improve equity in YA cancer care, and connect YAs with peer survivors.

Cancer-related cognitive impairment in survivors of adolescent and young adult non-central nervous system cancer: A scoping review.

OBJECTIVES: Cancer-related cognitive impairments (CRCI) are common after treatment and can have important impacts on the lives of adolescent and young adult (AYA) cancer survivors-those cancer survivors diagnosed between ages 15 and 39. However, most research focuses on survivors diagnosed under age 15 or over age 39 so we know relatively little about CRCI among AYA survivors of non-central nervous system (CNS) cancers. Here we review the research on CRCI among AYA survivors of non-CNS cancers to determine prevalence, associated factors, and impact on survivors' lives as well as implications for future research. METHODS: In November 2021 we performed a systematic search of the literature in MEDLINE, Web of Science, PsycInfo, CINAHL, EMBASE, and Cochrane Central Register of Controlled Trials to identify peer-reviewed English language articles describing original research with at least one cognitive outcome and conducted with AYA survivors of non-CNS cancer diagnosed as AYAs. We screened 6003 articles and 21 met eligibility criteria. Guided by the PRISMA-ScR Checklist, we extracted study information to meet review objectives. RESULTS: Most studies employed cross-sectional surveys or interviews, though some employed longitudinal methods, neurocognitive assessments, or brain imaging. From the subset of articles that reported a prevalence we calculated a weighted mean prevalence of 25.75% and weighted median prevalence of 27.8%. The factors associated with CRCI included female gender, higher dose chemotherapy, and comorbidities. CRCI impacted the lives of AYA survivors through impaired role functioning, financial toxicity, and unmet needs. CONCLUSIONS: CRCI is highly prevalent among non-CNS cancer survivors diagnosed as AYAs and impacts quality of life and role functioning. This review suggests a need for further longitudinal, imaging, and mixed methods research and provision of resources to help achieve better quality of life and educational and occupational attainment during what is potentially a decades-long survivorship period. However, although interventions might improve cognition and functioning, the review identified only one pilot study. Digital interventions may be a practical and effective option for this age group, but they have yet to be adequately investigated.

Examining Mobile Technologies to Support Older Adults With Dementia Through the Lens of Personhood and Human Needs: Scoping Review.

BACKGROUND: With the world's rapidly growing older adult population, there is an increase in the number of people living with dementia. This growth leads to a strain on their caregivers and our health care system and to an increased attention on mitigating strain by using mobile technology to sustain the independence of people with dementia. However, less attention is given to whether these technologies meet the stated and unstated needs of people with dementia. OBJECTIVE: The aim of this study was to provide an overview of the current research on mobile technologies for people with dementia, considering the current research through the lens of personhood and human needs, and to identify any gaps that represent research opportunities. METHODS: We performed a systematic search in Medical Literature Analysis and Retrieval System Online (MEDLINE), Web of Science, PsycINFO, Cumulative Index of Nursing and Allied Health Literature (CINAHL), Excerpta Medica dataBASE (EMBASE), and the Cochrane Central Register of Controlled Trials (CENTRAL) in October 2018. We screened 5560 articles and identified 24 that met our inclusion and exclusion criteria. We then performed thematic analysis to organize the articles by the types of support mobile technologies provide and mapped those types of support to human needs to identify the gaps in support. RESULTS: Articles described research on mobile technologies that support people with dementia to (1) perform daily activities, (2) maintain social interaction, (3) aid memory, (4) engage in leisure activities, (5) track location, and (6) monitor health. At least one type of support mapped to each human need, with most supporting lower-level needs such as physiological and safety needs. Little attention seems to be paid to personhood. CONCLUSIONS: Mobile technologies that support daily activities, relationships, memory, leisure activities, health, and safety can partially compensate for decreased function owing to dementia, but the human needs of people with dementia are often not adequately considered. Most technologies support basic physiological and safety needs, whereas many pay little attention to higher-level needs such as self-esteem and agency. Important research opportunities include using person-centered methods to develop technology to meet higher-level needs and to preserve personhood by incorporating human and psychological needs of people with dementia along with ethical considerations.

"It's Not Just Technology, It's People": Constructing a Conceptual Model of Shared Health Informatics for Tracking in Chronic Illness Management.

BACKGROUND: For many people, tracking health indicators is central to managing a chronic illness. However, previous informatics research has largely viewed tracking as a solitary process that lacks the characteristics essential to tracking in support of chronic illness management. OBJECTIVE: To inform development of effective technologies that aid tracking of health indicators to support chronic illness management, this study aimed to construct a health informatics model that accurately describes the work and social context of that tracking work. METHODS: As part of a larger project, we conducted semistructured interviews with 40 adults concerning their chronic illness management practices, including tracking and communication. We also assembled transcripts of 30 publicly available videos of 24 adults discussing tracking processes for managing their own chronic illness. We used qualitative methods to analyze interviews and video transcripts through the lens of ongoing personal and health informatics research. RESULTS: We have described the people and work involved in tracking in support of chronic illness management and contributed a Conceptual Model of Shared Health Informatics (CoMSHI). Specifically, we identified the need for a health informatics model that (1) incorporates the ongoing nature of tracking work and (2) represents the social dimension of tracking for illness management. Our model depicts communication, information, collection, integration, reflection, and action work in the social context of the person with chronic illness, informal carers, health care providers, and community members. CONCLUSIONS: The resulting CoMSHI yields a more detailed and nuanced viewpoint of tracking in support of chronic illness management and can inform technology design to improve tracking tools to support people in more confident and capable chronic illness management.

Mobile Technology for Cognitive Assessment of Older Adults: A Scoping Review.

BACKGROUND AND OBJECTIVES: The number of people diagnosed with dementia is rising appreciably as the population ages. In an effort to improve outcomes, many have called for facilitating early detection of cognitive decline. Increased use of mobile technology by older adults provides the opportunity to deliver convenient, cost-effective assessments for earlier detection of cognitive impairment. This article presents a review of the literature on how mobile platforms-smartphones and tablets-are being used for cognitive assessment of older adults along with benefits and opportunities associated with using mobile platforms for cognitive assessment. RESEARCH DESIGN AND METHODS: We searched MEDLINE, Web of Science, PsycInfo, CINAHL, EMBASE, and Cochrane Central Register of Controlled Trials in October 2018. This search returned 7,024 articles. After removing 1,464 duplicates, we screened titles and abstracts then screened full-text for those articles meeting inclusion and exclusion criteria. RESULTS: Twenty-nine articles met our inclusion criteria and were categorized into 3 groups as follows: (a) mobile versions of existing article or computerized neuropsychological tests; (b) new cognitive tests developed specifically for mobile platforms; and (c) the use of new types of data for cognitive assessment. This scoping review confirms the considerable potential of mobile assessment. DISCUSSION AND IMPLICATIONS: Mobile technologies facilitate repeated and continuous assessment and support unobtrusive collection of auxiliary behavioral markers of cognitive impairment, thus allowing users to view trends and detect acute changes that have traditionally been difficult to identify. Opportunities include using new mobile sensors and wearable devices, improving reliability and validity of mobile assessments, determining appropriate clinical use of mobile assessment information, and incorporating person-centered assessment principles and digital phenotyping.

Efficacy of personalized models in discriminating high cognitive demand conditions using text-based interactions.

Although high cognitive demand conditions can impair psychological, physical, and behavioral processes without appropriate management, current measurement methods are too cumbersome for continuous monitoring of cognitive demand, and do not account for individual differences. This research uses keystroke and linguistic markers of typed text to construct individualized models of cognitive demand response to discriminate high and low cognitive demand conditions, the results of which can have implications for design of cognitive demand monitoring systems for personalized health management. We constructed within-subject models of cognitive demand response for nine participants and one between-subjects model based on 20 participants. The AUCs for personalized models ranged from 0.679 to 0.953 (Mean=0.826, SD=0.085), significantly higher than chance (p < 0.0001) and the 0.714 AUC for the generic model (p=0.002). Although the features in each model were different, the most common features across models are rate of negative emotion, lexical diversity, rate of words over six letters, and word count. These results confirm significant individual differences in cognitive demand response and suggest that those developing measurement methods used in a monitoring system should consider adaptation to individual characteristics. Our research operationalizes the effects of cognitive demand on HCI and contributes a unique combination of text and keystroke features used to detect high cognitive demand situations.

Designing Asynchronous Communication Tools for Optimization of Patient-Clinician Coordination.

Asynchronous communication outside the clinical setting has both enriched and complicated patient-clinician interactions. Many patients can now interact with a patient portal 24 hours a day, asking questions of their clinicians via secure message, checking lab results, ordering medication refills, or making appointments. However, the mode of communication (asynchronous) and the nature of the interaction (lacking tone or body language) strip valuable information from each side of patient-clinician asynchronous communication. Using interviews with 34 individuals who actively manage a chronic illness of their own, or for a child or partner, we elicited narratives about patients' experiences and expectations for using asynchronous communication to address medical issues with their clinicians. Based on these perspectives, we present opportunities for designing asynchronous communication tools to better facilitate understanding of and coordination around care activities between patients and clinicians.

Shared Calendars for Home Health Management.

What is the role of shared calendars for home health management? Utilizing a maximum variation sampling method, we interviewed 20 adult individuals with diabetes and 20 mothers of children with asthma to understand calendar use in the context of chronic disease home health management. In comparing the experiences of these two groups, we explore participants' use of tools for organizing tasks and appointments, their strategies for capturing health and non-health events in the family calendar system, the ecology of artifacts that intersect with their scheduling tools, and the failures they experienced while managing their calendar systems. Through this work, we offer a context-specific perspective of schedule management strategies for individuals and families who must integrate their handling of chronic illnesses with everyday living.

Understanding Design Tradeoffs for Health Technologies: A Mixed-Methods Approach.

We introduce a mixed-methods approach for determining how people weigh tradeoffs in values related to health and technologies for health self-management. Our approach combines interviews with Q-methodology, a method from psychology uniquely suited to quantifying opinions. We derive the framework for structured data collection and analysis for the Q-methodology from theories of self-management of chronic illness and technology adoption. To illustrate the power of this new approach, we used it in a field study of nine older adults with type 2 diabetes, and nine mothers of children with asthma. Our mixed-methods approach provides three key advantages for health design science in HCI: (1) it provides a structured health sciences theoretical framework to guide data collection and analysis; (2) it enhances the coding of unstructured data with statistical patterns of polarizing and consensus views; and (3) it empowers participants to actively weigh competing values that are most personally significant to them.

Classifying Text-Based Computer Interactions for Health Monitoring.

Using a statistical model of keystroke and linguistic features, a novel assessment approach leverages ordinary text-typing activities to monitor for signs of early cognitive decline in older adults. Early detection could allow for appropriate interventions and effective treatment.

Engineering for reliability in at-home chronic disease management.

Individuals with chronic conditions face challenges with maintaining lifelong adherence to self-management activities. Although reminders can help support the cognitive demands of managing daily and future health tasks, we understand little of how they fit into people's daily lives. Utilizing a maximum variation sampling method, we interviewed and compared the experiences of 20 older adults with diabetes and 19 mothers of children with asthma to understand reminder use for at-home chronic disease management. Based on our participants' experiences, we contend that many self-management failures should be viewed as systems failures, rather than individual failures and non-compliance. Furthermore, we identify key principles from reliability engineering that both explain current behavior and suggest strategies to improve patient reminder systems.