Negotiating with digital self-monitoring: A qualitative study on how patients with multiple sclerosis use and experience digital self-monitoring within a scientific study.

Research shows that patients can have values and use practices that are different from those envisioned by technology developers. Using sociomaterialism as an analytical lens, we show how patients negotiated with digital self-monitoring in the context of a scientific study. Our paper draws on interviews with 26 patients with the chronic neurological disease multiple sclerosis (MS) who were invited to use an activity tracker and a self-monitoring app for a period of 12 months as part of their everyday life. Our study aims to fill a gap: relatively little is known about how digital self-monitoring becomes materialized in the everyday lives of patients with chronic diseases. We show that patients engaged in digital self-monitoring because they are eager to participate in research to contribute knowledge that will benefit the larger community of patients rather than to improve their personal self-management. Although respondents adhered to digital self-monitoring during the study, it is not self-evident that they would do so for private self-monitoring purposes. It became clear that respondents did not necessarily perceive digital self-monitoring as useful for their self-management practices due to their established knowledge and routines. Moreover, respondents referred to the inconvenience of having to perform self-monitoring tasks and the emotional burden of being reminded of the MS because of the digital self-monitoring. We conclude by indicating what could be considered when designing scientific studies, including the suitability of conventional study designs for evaluating technologies used daily by patients and the challenge of integrating patients' experiential knowledge into scientific practices.

Digital Self-monitoring of Multiple Sclerosis: Interview Study With Dutch Health Care Providers on the Expected New Configuration of Roles and Responsibilities.

BACKGROUND: Digital self-monitoring allows patients to produce and share personal health data collected at home. This creates a novel situation in which health care providers and patients must engage in a reconfiguration of roles and responsibilities. Although existing research pays considerable attention to the perceptions of patients regarding digital self-monitoring, less attention has been paid to the needs, wishes, and concerns of health care providers. As several companies and public institutions are developing and testing digital self-monitoring at the time of writing, it is timely and relevant to explore how health care providers envision using these technologies in their daily work practices. Our findings can be considered in decision-making processes concerning the further development and implementation of digital self-monitoring. OBJECTIVE: This study aims to explore how health care providers envisage using smartphone apps for digital self-monitoring of multiple sclerosis (MS) in their daily work practices, with a particular focus on physician-patient communication and on how health care providers respond to self-monitoring data and delegate tasks and responsibilities to patients. METHODS: We conducted semistructured in-depth interviews with 14 MS health care providers: 4 neurologists, 7 MS specialist nurses, and 3 rehabilitation professionals. They are affiliated with 3 different hospitals in the Netherlands that will participate in a pilot study to assess the efficiency and effectiveness of a specific smartphone app for self-monitoring. RESULTS: The interviewed health care providers seemed willing to use these smartphone apps and valued the quantitative data they produce that can complement the narratives that patients provide during medical appointments. The health care providers primarily want to use digital self-monitoring via prescription, meaning that they want a standardized smartphone app and want to act as its gatekeepers. Furthermore, they envisioned delegating particular tasks and responsibilities to patients via digital self-monitoring, such as sharing data with the health care providers or acting on the data, if necessary. The health care providers expected patients to become more proactive in the management of their disease. However, they also acknowledged that not all patients are willing or able to use digital self-monitoring apps and were concerned about the potential psychological and emotional burden on patients caused by this technology. CONCLUSIONS: Our findings show that health care providers envisage a particular type of patient empowerment and personalized health care in which tensions arise between health care providers acting as gatekeepers and patient autonomy, between patient empowerment and patient disempowerment, and between the weight given to quantitative objective data and that given to patients' subjective experiences. In future research, it would be very interesting to investigate the actual experiences of health care providers with regard to digital self-monitoring to ascertain how the tensions mentioned in this paper play out in practice.

The use of molecular biomarker tests: an interview study with healthcare providers about a molecular biomarker test for prostate cancer.

Aim: Investigate why healthcare providers are not always willing to use molecular biomarker tests, even though they promise to personalize disease diagnosis and treatment. Materials & methods: We interviewed 20 Dutch urological healthcare providers to ascertain why they used or did not use SelectMDx, a biomarker test for prostate cancer. Results: Whether and how it was used differed from the developers' expectations, because users and nonusers disagreed about its perceived advantages; the scientific and clinical evidence; the advantages of MRI; and the value of PCA3 testing. Financial issues and the absence of SelectMDx in professional guidelines and hospital care pathways also hampered its use. Conclusion: Eliciting users' and nonusers' views is important to better understand how biomarker tests can be embedded in clinical practice.

Lay abstract Molecular biomarkers are molecules, found in urine or blood, for instance, that help healthcare providers to diagnose a disease and provide a prognosis. This assists their clinical decision-making. However, not all healthcare providers use molecular biomarkers, and we wanted to find out why. We focused on a test for prostate cancer called the SelectMDx test. We interviewed 20 Dutch healthcare providers and found that whether they used the SelectMDx test and how they used it depended on things like their interpretation of the scientific evidence; how they valued other technologies; the financial disadvantages; and the test's absence in professional guidelines. By eliciting users' and nonusers views, we have gained a better understanding of how biomarker tests can be embedded in clinical practice.

A Two-Minute Walking Test With a Smartphone App for Persons With Multiple Sclerosis: Validation Study.

BACKGROUND: Walking disturbances are a common dysfunction in persons with multiple sclerosis (MS). The 2-Minute Walking Test (2MWT) is widely used to quantify walking speed. We implemented a smartphone-based 2MWT (s2MWT) in MS sherpa, an app for persons with MS. When performing the s2MWT, users of the app are instructed to walk as fast as safely possible for 2 minutes in the open air, while the app records their movement and calculates the distance walked. OBJECTIVE: The aim of this study is to investigate the concurrent validity and test-retest reliability of the MS sherpa s2MWT. METHODS: We performed a validation study on 25 persons with relapsing-remitting MS and 79 healthy control (HC) participants. In the HC group, 21 participants were matched to the persons with MS based on age, gender, and education and these followed the same assessment schedule as the persons with MS (the HC-matched group), whereas 58 participants had a less intense assessment schedule to determine reference values (the HC-normative group). Intraclass correlation coefficients (ICCs) were determined between the distance measured by the s2MWT and the distance measured using distance markers on the pavement during these s2MWT assessments. ICCs were also determined for test-retest reliability and derived from 10 smartphone tests per study participant, with 3 days in between each test. We interviewed 7 study participants with MS regarding their experiences with the s2MWT. RESULTS: In total, 755 s2MWTs were completed. The adherence rate for the persons with MS and the participants in the HC-matched group was 92.4% (425/460). The calculated distance walked on the s2MWT was, on average, 8.43 m or 5% (SD 18.9 m or 11%) higher than the distance measured using distance markers (n=43). An ICC of 0.817 was found for the concurrent validity of the s2MWT in the combined analysis of persons with MS and HC participants. Average ICCs of 9 test-retest reliability analyses of the s2MWT for persons with MS and the participants in the HC-matched group were 0.648 (SD 0.150) and 0.600 (SD 0.090), respectively, whereas the average ICC of 2 test-retest reliability analyses of the s2MWT for the participants in the HC-normative group was 0.700 (SD 0.029). The interviewed study participants found the s2MWT easy to perform, but they also expressed that the test results can be confronting and that a pressure to reach a certain distance can be experienced. CONCLUSIONS: The high correlation between s2MWT distance and the conventional 2MWT distance indicates a good concurrent validity. Similarly, high correlations underpin a good test-retest reliability of the s2MWT. We conclude that the s2MWT can be used to measure the distance that the persons with MS walk in 2 minutes outdoors near their home, from which both clinical studies and clinical practice can benefit.

Capability of deaf children with a cochlear implant.

INTRODUCTION: The main idea underlying this paper is that impairments such as deafness are particularly relevant to the extent that they lead to deprivation of capability. Likewise, the impact of healthcare services such as cochlear implants and subsequent rehabilitation can best be inferred from the extent that they protect or restore capability of those affected. METHODS: To explore children's post-implant capabilities, we tested two newly developed digital, adaptive child self-report and parent-report questionnaires in 19 deaf children (aged 8-12 years) and their parents during rehabilitation, as well as in 23 age peers with normal hearing. RESULTS: Despite the impressive speech-language results that were recorded with cochlear implants, the post-implant capabilities of the deaf children we evaluated differed from those of their hearing peers, with the cochlear implant group appearing particularly disadvantaged in areas such as accessing information, communication, social participation, and participation in school. CONCLUSION: Deaf children with cochlear implants who are performing well on linguistic and auditory tests can still experience serious limitations in desired functioning. Our findings suggest that a capability approach may reveal aspects of what is being achieved through rehabilitation that might otherwise remain unnoticed, and that could help to further improve the well-being of our patients.IMPLICATIONS FOR REHABILITATIONOverall, children with cochlear implants appeared disadvantaged in certain capability areas, like accessing information, communication, social participation, and participation in school.It may be worthwhile to also ascertain capabilities in these children, representing a domain not covered by clinical measures, tapping directly into areas that are valuable to the patient.

Symbol Digit Modalities Test Variant in a Smartphone App for Persons With Multiple Sclerosis: Validation Study.

BACKGROUND: The decline of cognitive processing speed (CPS) is a common dysfunction in persons with multiple sclerosis (MS). The Symbol Digit Modalities Test (SDMT) is widely used to formally quantify CPS. We implemented a variant of the SDMT in MS sherpa, a smartphone app for persons with MS. OBJECTIVE: The aim of this study was to investigate the construct validity and test-retest reliability of the MS sherpa smartphone variant of the SDMT (sSDMT). METHODS: We performed a validation study with 25 persons with relapsing-remitting MS and 79 healthy control (HC) subjects. In the HC group, 21 subjects were matched to the persons with MS with regard to age, gender, and education and they followed the same assessment schedule as the persons with MS (the "HC matched" group) and 58 subjects had a less intense assessment schedule to determine reference values (the "HC normative" group). Intraclass correlation coefficients (ICCs) were determined between the paper-and-pencil SDMT and its smartphone variant (sSDMT) on 2 occasions, 4 weeks apart. Other ICCs were determined for test-retest reliability, which were derived from 10 smartphone tests per study participant, with 3 days in between each test. Seven study participants with MS were interviewed regarding their experiences with the sSDMT. RESULTS: The SDMT scores were on average 12.06% higher than the sSDMT scores, with a standard deviation of 10.68%. An ICC of 0.838 was found for the construct validity of the sSDMT in the combined analysis of persons with MS and HC subjects. Average ICCs for test-retest reliability of the sSDMT for persons with MS, the HC matched group, and the HC normative group were 0.874, 0.857, and 0.867, respectively. The practice effect was significant between the first and the second test of the persons with MS and the HC matched group and trivial for all other test-retests. The interviewed study participants expressed a positive attitude toward the sSDMT, but they also discussed the importance of adapting a smartphone cognition test in accordance with the needs of the individual persons with MS. CONCLUSIONS: The high correlation between sSDMT and the conventional SDMT scores indicates a very good construct validity. Similarly, high correlations underpin a very good test-retest reliability of the sSDMT. We conclude that the sSDMT has the potential to be used as a tool to monitor CPS in persons with MS, both in clinical studies and in clinical practice.

Toward Digital Self-monitoring of Multiple Sclerosis: Investigating First Experiences, Needs, and Wishes of People with MS.

BACKGROUND: Digital self-monitoring, such as through smartphone applications (apps) or activity trackers, could be applied to monitor the health of people with multiple sclerosis (MS). This self-monitoring could facilitate personalized therapies and self-management of MS. The acceptance of digital self-monitoring tools by patients depends on them being able and willing to use these tools in their daily lives. METHODS: In-depth interviews were conducted with seven adults with MS before and after participation in a study in which they used an activity tracker and an MS-specific smartphone app for 4 weeks. We inquired about experiences with the tools in daily life and needs and wishes regarding further development and implementation of digital self-monitoring for people with MS. RESULTS: The smartphone app and the activity tracker increased respondents' awareness of their physical status and stimulated them to act on the data. Challenges, such as confrontation with their MS and difficulties with data interpretation, were discussed. The respondents desired 1) adaptation of digital self-monitoring tools to a patient's personal situation, 2) guidance to increase the value of the data, and 3) integration of digital self-monitoring into treatment plans. CONCLUSIONS: These findings show that patients can provide detailed descriptions of their daily life experiences with new technologies. Mapping these experiences could help in better aligning the development and implementation of digital self-monitoring tools, in this case smartphones and activity trackers, with the needs and wishes of people with MS.