PURPOSE
Advances in digital health technology can overcome barriers to measurement of function and mobility for older adults with blood cancers, but little is known about how older adults perceive such technology for use in their homes.
METHODS
To characterize potential benefits and barriers associated with using technology for home functional assessment, we conducted three semistructured focus groups (FGs) in January 2022. Eligible patients came from the Older Adult Hematologic Malignancies Program at Dana-Farber Cancer Institute (DFCI), which includes adults 73 years and older enrolled during their initial consult with their oncologist. Eligible caregivers were 18 years and older and identified by enrolled patients as their primary caregiver. Eligible clinicians were practicing DFCI hematologic oncologists, nurse practitioners, or physician assistants with ≥2 years of clinical experience. A qualitative researcher led thematic analysis of FG transcripts to identify key themes.
RESULTS
Twenty-three participants attended the three FGs: eight patients, seven caregivers, and eight oncology clinicians. All participants valued function and mobility assessments and felt that technology could overcome barriers to their measurement. We identified three themes related to potential benefits: making it easier for oncology teams to consider function and mobility; providing standardized, objective data; and facilitating longitudinal data. We also identified four themes related to barriers to home functional assessment: concerns related to privacy and confidentiality, burden of measuring additional patient data, challenges in operating new technology, and concerns related to data improving care.
CONCLUSION
These data suggest that specific concerns raised by older patients, caregivers, and oncology clinicians must be addressed to improve acceptability and uptake of technology used to measure function and mobility in the home.
INTRODUCTION
Cancer treatment guidelines recommend administering geriatric assessments (GA) to adults 65 years and older undergoing systemic treatment.1 Function and mobility constitute the core of GA, with objective performance measures such as gait speed carrying strong associations with survival and disability and a similar predictive value as full frailty assessments.2-4 Despite their usefulness for clinical care, older adult function and mobility are infrequently assessed in oncology practice because of barriers related to limited time, resources, and staff.5,6 As a result, oncologists seldom prioritize these variables when making treatment decisions.7
CONTEXT
Key Objective
To qualitatively assess in focus groups of key stakeholders the benefits and barriers to implementation of technologies for home function and mobility assessment in older adults with blood cancers.
Knowledge Generated
All participants valued function and mobility assessments and felt that technology could overcome barriers to their measurement. We identified three themes related to potential benefits: making it easier for oncology teams to consider function and mobility; providing standardized, objective data; and facilitating longitudinal data. We also identified four themes related to barriers to home functional assessment: concerns related to privacy and confidentiality, burden of measuring additional patient data, challenges in operating new technology, and concerns related to data improving care.
Relevance
Addressing barriers to implementation through clinician-patient communication, best practices in data security, and further investigation into whether the use of technology improves outcomes will enhance its implementation in research and practice.
Advances in technology used to objectively measure function and mobility in patients' homes may overcome barriers to their assessment in the clinic. Recent literature suggests that virtual or remote assessments conducted without direct patient contact are feasible and comparable with clinical assessments.8-10 Wearable sensors,4,11-19 such as those built into watches or smartphones, and passive monitoring devices16,20 can measure function with little-to-no patient interaction, expanding horizons in tracking older adult function and mobility.21-23
Despite the promise of this technology, quantitative data regarding its uptake and feasibility are mixed24,25 and qualitative data explaining barriers to uptake are lacking. Input from key stakeholders is essential for ethical implementation of digital health technology in older patients' homes.26 Moreover, the US Food and Drug Administration mandates that if such digital assessments are to be used in clinical trials evaluating new interventions, then patient perspectives regarding the validity and acceptability of such assessments must be obtained.27,28 These perspectives should represent the target population in which the technology will be deployed, but perspectives from stakeholders representing older patients with blood cancers are lacking.
Accordingly, we conducted focus groups (FGs) of older patients with blood cancers, their caregivers, and hematologic oncology clinicians to characterize potential benefits and barriers associated with using technology to measure function in the home. We focused on two major classes of technologies: intermittent wearable sensors and passive monitoring devices.21,29 We identified emergent themes and used these to provide recommendations to guide implementation of these technologies for research and practice.
METHODS
Study Design and Participants
We conducted three semistructured FGs in January 2022: two 90-minute FGs of older patients with either myelodysplastic syndrome (MDS) or multiple myeloma and their caregivers and one 60-minute FG of hematologic oncology clinicians. Patients and caregivers were included together since caregivers are often intimately involved in patient decision making.30,31 Per Krueger and Casey's methods, we aimed to recruit 8-10 patients for each FG.32 Eligible patients came from the Older Adult Hematologic Malignancy Program at Dana-Farber Cancer Institute (DFCI), which includes adults 73 years and older enrolled during their initial consult with their oncologist.8,33 Eligible caregivers were 18 years and older and identified by enrolled patients as their primary caregiver. Eligible clinicians were practicing DFCI hematologic oncologists, nurse practitioners (NPs), or physician assistants with ≥2 years of clinical experience. Adults unable to consent and individuals younger than 18 years were excluded. This study was approved by the DFCI Institutional Review Board.
The study team presented examples, supplemented with videos, of two of the main classes of in-home technology for measuring function and mobility: (1) intermittent wearable sensors (represented by a smartphone gait application; Fig 1A) and (2) passive monitoring devices (represented by a continuous, contactless activity sensor; Fig 1B). We described how both technologies transmit deidentified data to clinicians through a patient's home Wi-Fi to a cloud server for different variables related to gait (eg, gait speed), activity (eg, time out of bed), and function (eg, transferring from bed to chair).
FIG 1.
Examples of (A) intermittent wearable sensor and (B) passive monitoring device shown to focus group participants. (A) Intermittent wearable sensor (smartphone gait application). A smartphone gait application is placed in a patient's pocket and uses the smartphone's accelerometer, gyroscope, and digital compass to acquire data related to gait during a discrete period of walking in the home.17 (B) Passive monitoring device (contactless activity sensor). A contactless activity sensor is strategically placed in a patient's home and uses radio waves to capture data passively and continuously on the patient's physical and movement activity throughout the day.29
Data Collection and Analysis
A.C.R. led the analysis, meeting regularly with the interdisciplinary study team. Borrowing from thematic and framework analyses,34-37 the multistage process included both prefigured and emergent dynamics. After reviewing all transcripts, a codebook for each FG was developed by investigators. The final codebooks included domains from the moderator guide and emergent concepts from the interview data. An iterative analytic approach of the coded data identified overarching connections between salient codes, with final steps focusing on identifying key themes within and across groups to characterize the perspectives on potential benefits and barriers associated with the use of in-home functioning technology. This process was supported by NVivo 12 Software (QSR International, Melbourne, Australia). We adhered to the consolidated criteria for reporting qualitative research.38 All FGs were conducted using a secure videoconferencing platform (Zoom), recorded, and professionally transcribed.
RESULTS
Participant Characteristics and General Themes
Twenty-three participants attended three FGs. The first FG contained four patients with MDS and four of their caregivers. The second contained four patients with multiple myeloma and three of their caregivers. The third contained eight oncology clinicians (seven physicians and one NP) with clinical expertise in a broad spectrum of hematologic malignancies. Additional participant characteristics are given in Table 1.
TABLE 1.
Characteristics of Participants in Focus Groups (N = 23)
Across all FGs, participants valued function and mobility as important domains of health and clinical assessment. Patients and caregivers desired an increased focus on function and mobility from their oncology team, with one participant stating the value of a “starting point…because [one] lose[s] perspective overtime” (Caregiver, FG1). Clinicians also characterized function and mobility as essential to assessing each patient holistically when determining chemotherapy intensity, ability to undergo a procedure, and/or referral to physical therapy as knowledge of home-based functional decline could affect prognosis.
We identified three main themes related to the potential benefits of in-home functioning technology (Table 2): (1) making it easier for oncology teams to consider function and mobility in their assessments and decision making; (2) providing more standardized, objective data on function and mobility; and (3) facilitating longitudinal data on function and mobility. We also identified four themes related to barriers that may limit acceptability of in-home functioning technology (Table 3): (1) concerns related to privacy and confidentiality; (2) the burden of conducting, documenting, and incorporating additional patient data; (3) challenges in operating new technology; and (4) concerns related to specific data collected and how these data would improve care.
TABLE 2.
Themes Related to Benefits Facilitating Acceptability of Technology for Measuring Function and Mobility in Patients' Homes
TABLE 3.
Themes Related to Barriers Limiting Acceptability of Technology for Measuring Function and Mobility in Patients' Homes
Benefits of In-Home Technology
Making it easier for oncology teams to consider function and mobility.
Many participants were interested in using technology for remote measurement, especially if it is beneficial to the oncology team making treatment decisions. One participant explained: “This would be huge to go from a perspective on quality of life to also bringing it down to some data about mobility and function…this could really be helpful to open people's eyes to not just looking at the numbers that come through on blood work” (Caregiver, FG1). When asked about a remote exercise class that focuses on improving function and mobility, patients were generally open to the idea of using technology to administer the exercise program. Oncology clinicians further saw the benefit of this technology, emphasizing that having information on patient status “sitting on [the] desk when [they] walked into that exam room along with their vital signs” would be helpful to combat limited time in clinic to perform functional assessments (Clinician FG).
Providing standardized, objective data.
One clinician spoke about the deficiency of their current approach to assessing function and mobility through informal assessments and subjective assessments such as Eastern Cooperative Oncology Group performance status, stating, “Everything is in the eye of the beholder…so there is a lot of subjectivity there” (Clinician FG). This participant then emphasized that standardized information on function and mobility would be helpful. One patient highlighted the importance of objective data, stating: “I think it's a definite good [piece of] information to collect and to pass on to the oncology team…My blood is improving tremendously, but yet I'm not” (Patient, FG1). Another patient noted, “Well, I think it's very important that they know how we act when we're away from the doctor's office” (Patient, FG1).
Oncology clinicians reacted positively to the smartphone gait application's ability to measure and deliver patients' walking data: “It seems to me that it’s a bit more standardized…it's a little easier to translate and know what it means when we actually get a number” (Clinician FG). Patients saw the potential benefits of data collected from this application, with one participant stating: “Maybe there's something in the gait and something in the way I'm walking that is an early warning system, then I would certainly want to know about that” (Patient, FG2).
Facilitating longitudinal data.
Clinicians emphasized that the technology presented could provide a meaningful assessment over time, given its continuous measurement. In addition, participants across all FGs noted that the passive monitoring device would seemingly have little impact on patients' day-to-day activities. One clinician stated: “The [passive monitoring device] system is a little bit…more believable, maybe, to some respect that eventually a patient will forget that it's there and go about their day on a semi-regular basis” (Clinician FG). Patients and caregivers further emphasized this potential advantage of the no-touch technology for individuals with functional decline as “they won't have to do a thing. It would be installed and that would be that” (Caregiver, FG1). One patient highlighted that the smartphone gait application would also help capture longitudinal data on function and mobility through intermittent interaction.
Barriers to In-Home Technology
Privacy and confidentiality.
There were a few privacy concerns regarding the smartphone gait application. Patients and caregivers noted that they trusted their oncology team but emphasized that their data should be treated like other medical information with limited access. One participant wanted more clarity: “My only concern is how the data will be collected, processed, and then ultimately used to help me” (Patient, FG2). Other questions about the technology included those about downloading the application, the range of measurements the application can collect, and obtaining periodic feedback.
There were several concerns related to the passive monitoring device, many related to protection of privacy when considering the continuous monitoring feature. Patients and caregivers asked if the monitoring device required cameras, one of whom characterized this as intrusive and another stated “I get the “big brother” feeling…[of] somebody looking over my shoulder in my house, which is not very appealing to me” (Caregiver, FG2). These participants posed numerous questions about the technology, including whether it could be turned off, whether the technology follows someone into the bathroom or when they are having sex, or whether multiple devices would be needed in the house. Other concerns expressed by participants included the potential for interference with other technology such as their TV or alarm system, potential radiation exposure, and hacking vulnerabilities.
Oncologists had similar privacy concerns as patients and caregivers to the passive monitoring device, with one clinician stating, “My initial thought was sort of big brother and whether or not patients…would accept this sort of device in their house and…how we would [form] the discussions that would have to go into having this sort of monitoring in the home” (Clinician FG). Other clinician concerns included the ability of the device to isolate and follow the correct person, the specific activities that it would be monitoring throughout the day, and the ability to have real-time monitoring for falls.
Conducting, documenting, and incorporating additional patient data.
No major problems or concerns were associated with the participants' perceived ability to complete the smartphone gait application's walking tests. One participant mentioned a burden for patients on treatment as “there's remembering to take pills and other things and keeping up on MyChart. And it's one more thing to have to do every day and turn on and stuff” (Patient, FG2). Both patient and caregiver FGs preferred to complete this assessment once a week at most, with support from reminders.
Participants across all FGs attested to the strain that additional data may put on their oncology teams. One caregiver stated their clinicians may feel that “[they] have to go and watch all this video of all [their] patients… [They] don't have time for that” (Caregiver, FG2). Clinicians echoed this sentiment, with one stating “It has to be presented… [in] a limited or a summarized amount of information” to be digestible (Clinician FG).
Operating new technology.
Patients and caregivers noted that new technology can be difficult to learn. There were participants who noted that they needed assistance with operating technology, often relying on a family member for help: “If my wife wasn't here, I wouldn't even know how to turn on Zoom” (Patient, FG1). For the intermittent wearable sensor, one patient stated their concern: “For that start and stop…I think individuals might have hearing loss or hearing difficulties…so is there…something that would cue it in a different way?” (Patient, FG1).
Data collection and improving care.
Clinicians saw the smartphone gait application as a simpler measurement but expressed concern about the gamesmanship of participants with the application's walking tests, with one clinician stating: “[Patients] might be able to jazz it up for 45 seconds, but the rest of the day they're sitting watching TV” (Clinician FG). In addition, one caregiver was concerned about knowledge of gait being measured biasing the test: “Maybe there's a certain I'm-being-observed effect here…so you really gear yourself up…and you can do that for 45 seconds, but it might not really represent how you're normally walking” (Caregiver, FG2). A few clinicians wanted data on predictive validity of the technology, informing them of the value of the collected data. There was consensus across the FGs that recommendation from oncologists would encourage patients to use the technology.
DISCUSSION
The findings from our FGs address important gaps in evidence regarding qualitative data from key stakeholders in the use of technology to measure function and mobility in older adults with blood cancers. Older patients, their caregivers, and clinicians all agreed that (1) current approaches commonly used by oncology teams to assess function and mobility are lacking, (2) more rigorous assessment is desired, and (3) technology could be a means to providing easier and better assessments in patients' homes. The potential of the technologies we presented in this study provides more frequent serial assessments in older patients' home environments and a more complete picture of their function and mobility than the snapshot provided by in-clinic assessments.
The oncology clinicians in our study reported limited-to-no previous experience in using technology to assess function and mobility, but they saw value in both the intermittent wearable sensor and the continuous passive monitor. Other forms of digital health technologies have shown promise in overcoming barriers related to limited time and staff in clinical settings,4,12,13,16-19,23,39,40 often cited by oncology teams as the main impediments to widespread measurement of function, mobility, and other domains of GA.5,6 Although the oncology clinicians in our study were aware of the importance of function and mobility assessment in older adults, this awareness may not be as prevalent in other centers, especially those without a geriatric oncology program. Educating oncology clinicians regarding the guidelines and evidence supporting the expansion of function and mobility assessment in their older patients may be needed before implementation of technology to help perform these assessments.6
Previous studies have reported concerns of clinicians about older patients' abilities to operate technology for various health care purposes, because of either inexperience or disabilities such as cognitive and sensory impairments.21,41-46 Although the older patients in our FGs echoed similar concerns regarding learning new technology, they also reported comfort with technologies they were already familiar with and use in their everyday lives, such as smartphones, tablets, and computers.21 This previous comfortability led patients and caregivers to react positively toward the smartphone gait application. Access to and previous comfortability with technology may be more limited in other populations of older adults with cancer than in our population from a tertiary care center, especially since the patients and caregivers in our FGs were proficient enough to operate videoconference technology. Therefore, it is essential to first determine the ability of older adults to operate technology before its implementation,21,41,45,47-49 such as through a formal technological literacy assessment like the MOLD-US framework.50,51 Additional institutional and systemic supports to help older patients better use technology are needed to address disparities in access.52
A unique contribution of our study is the qualitative evidence from key stakeholders regarding perceived barriers to implementing technology used to measure home function and mobility in older adults with blood cancers. Our participants shared previously reported concerns related to privacy and confidentiality of patient-generated data in other populations, especially associated with the continuous, passive monitoring device.26,27 Less well-known is our finding across stakeholders regarding the concerns for how specific data were going to be used and whether these data would actually improve care. Patients and caregivers sought to know the exact measures (eg, gait speed) being collected and wanted assurance that these measures would be useful to their oncology team. In turn, before using the technology in their decision making, clinicians wanted both forms of technologies to be validated and proven to be effective in improving outcomes in their older patients. There are many potential benefits of these technologies, including early detection of gait abnormalities or declines in functioning that could trigger more timely disease management. However, these benefits must not only be established but also outweigh the burden of implementing additional monitoring in already-burdened oncology clinics.
The above barriers may in part explain the limited uptake of technologies reported by previous studies, and the barriers should be addressed to improve uptake and acceptability in future implementation efforts.24,25 Obtaining insights from key stakeholders allows us to conclude that the acceptability of home monitoring technology is interdependent: patients and caregivers reported that many of their concerns would be ameliorated if their oncology teams recommended either technology as an important component of their care, and oncology clinicians stressed that data regarding validity and efficacy were needed before they would recommend the technology to patients. Table 4 summarizes several recommendations to leverage the perceived benefits and overcome potential barriers in the implementation of technology for home functional assessment in future research and practice.
TABLE 4.
Recommendation to Leverage Perceived Benefits and Overcome Potential Barriers to Enhance Implementation of Technology for Home Functional Assessment
Our work has limitations. All participants were recruited at a tertiary care cancer center. The patient/caregiver FGs contained predominantly male patients (n = 6) and female caregivers (n = 6); none of the patients were frail; all patients reported their ethnicity as not Hispanic; all but one (who declined to report) were White. Gaining the perceptions of stakeholders from community oncology practices, frail patients, and more diverse populations is needed. Moreover, although some evidence suggests that FGs conducted virtually may be comparable with in-person FGs,55 our videoconference format might have influenced the sample population we enrolled and the qualitative responses gathered.56
In conclusion, our FGs of older patients with blood cancers, caregivers, and clinicians provide critical insights into the benefits and barriers of technology for home function and mobility assessment. Addressing these barriers through clinician-patient communication, best practices in data security, and further investigation into whether the use of technology improves outcomes will enhance its implementation in research and practice. Responding to the needs of key stakeholders will optimize the uptake of these technologies to fully realize their potential in expanding function and mobility measurements of older patients in the home.
Gregory A. Abel
Consulting or Advisory Role: Novartis
Clark DuMontier
Stock and Other Ownership Interests: Lilly (I)
No other potential conflicts of interest were reported.
PRIOR PRESENTATION
Presented as a poster at the American Society of Hematology's Annual Meeting, New Orleans, LA, December 10-13, 2022.
SUPPORT
Supported by the Edward P. Evans Center for MDS at Dana-Farber Cancer Institute (G.A.A. and C.D.); the Dana-Farber/Harvard Cancer Center Specialized Program of Research Excellence in Multiple Myeloma through National Cancer Institute, NIH, Grant No. P50 CA100707 (C.D.); the Boston Claude D. Pepper Older Americans Independence Center through National Institute on Aging, NIH, Grant No. P30 AG031679 (C.D.); and the Older Adult Hematologic Malignancy Program through the Murphy Family Fund from the Dana-Farber Cancer Institute (G.A.A.).
AUTHOR CONTRIBUTIONS
Conception and design: Dillon D. Clancy, Anna C. Revette, Nupur E. Bahl, Marcia A. Testa, Jane A. Driver, Gregory A. Abel, Clark DuMontier
Financial support: Jane A. Driver, Gregory A. Abel, Clark DuMontier
Provision of study materials or patients: Dillon D. Clancy, Anna C. Revette, Nupur E. Bahl, Tammy Hshieh, Gregory A. Abel
Collection and assembly of data: Dillon D. Clancy, Anna C. Revette, Nupur E. Bahl, Clark DuMontier
Data analysis and interpretation: Dillon D. Clancy, Anna C. Revette, Nupur E. Bahl, Kristi T. Ho, Bradley Manor, Marcia A. Testa, Christina M. Dieli-Conwright, Tammy Hshieh, Jane A. Driver, Gregory A. Abel, Clark DuMontier
Manuscript writing: All authors
Final approval of manuscript: All authors
Accountable for all aspects of the work: All authors
AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/cci/author-center.
Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).
Gregory A. Abel
Consulting or Advisory Role: Novartis
Clark DuMontier
Stock and Other Ownership Interests: Lilly (I)
No other potential conflicts of interest were reported.
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