| Literature DB >> 35119373 |
Anna L Beukenhorst1,2, Katherine M Burke3, Zoe Scheier3, Timothy M Miller4, Sabrina Paganoni3,5, Mackenzie Keegan3, Ella Collins3, Kathryn P Connaghan6, Anna Tay4, James Chan7, James D Berry3, Jukka-Pekka Onnela1.
Abstract
BACKGROUND: Smartphone studies provide an opportunity to collect frequent data at a low burden on participants. Therefore, smartphones may enable data collection from people with progressive neurodegenerative diseases such as amyotrophic lateral sclerosis at high frequencies for a long duration. However, the progressive decline in patients' cognitive and functional abilities could also hamper the feasibility of collecting patient-reported outcomes, audio recordings, and location data in the long term.Entities:
Keywords: attrition; digital phenotyping; mobile health; mobile phone; smartphones; trial
Mesh:
Year: 2022 PMID: 35119373 PMCID: PMC8857693 DOI: 10.2196/31877
Source DB: PubMed Journal: JMIR Mhealth Uhealth ISSN: 2291-5222 Impact factor: 4.773
Characteristics of the 3 included studies.
| Study | Number of participants, N | Study duration (weeks) | Frequency of data collection | ||
|
|
|
| Clinic visit | Smartphone survey | Smartphone sensors |
| Study 1 | 22 | 12 | 3 times | Weekly | GPS on for 1 minute and off for 10 minutes |
| Study 2 | 49 | 52 | 2 times | Weekly | GPS on for 1 minute and off for 10 minutes |
| Study 3 | 23 | 20 | 3 times | Weekly | GPS on for 1 minute and off for 10 minutes |
Demographic characteristics of participants per study.
| Characteristics | Study 1 | Study 2 | Study 3 | |
| Number of participants, N | 22 | 49 | 23 | |
| Sex (male), n (%) | 15 (68) | 30 (59) | 9 (39) | |
| Race (White), n (%) | 20 (91) | 48 (98) | 23 (100) | |
| Phone operating system (iOS users), n (%) | 17 (77) | 36 (73) | 12 (52) | |
|
| 21 (100) | 49 (100) | 23 (100) | |
|
| Bulbar | 5 (23) | 11 (22) | 7 (30) |
|
| Limb | 16 (73) | 38 (78) | 15 (65) |
|
| Trunk | 1 (5) | 0 | 1 (4) |
| Age (years), mean (SD) | 56 (6) | 57 (11) | 58 (10) | |
| Disease duration at baseline visit (months), mean (SD) | 31 (21) | 35 (23; n=48)a | 26 (14; n=22)a | |
| Diagnostic delayb (months), mean (SD) | 17 (13) | 17 (14) | 12 (7; n=22)a | |
|
| 34 (7) | 35 (9; n=46)a | 36 (8) | |
|
| Bulbar subscore | 10 (2) | 10 (3) | 9 (3) |
|
| Fine motor subscore | 8 (2) | 8 (3) | 8 (3) |
|
| Gross motor subscore | 7 (3) | 7 (3) | 8 (3) |
|
| Respiratory subscore | 9 (3) | 10 (2) | 11 (2) |
aData were missing; mean and SD calculated over smaller sample size (smaller sample size provided as n, wherever applicable).
bDiagnostic delay: time between symptom onset and diagnosis.
cALSFRS-R: revised amyotrophic lateral sclerosis functional rating scale.
Figure 1Kaplan–Meier plot estimates of time-to-discontinuation for 3 data types. Each color denotes a different data type: audio data in red, GPS data in blue, and survey data in yellow. Participants that were censored before the end of the study are denoted by + signs. Each panel shows time-to-discontinuation in a different study: study 1 (top, a 12-week pilot study), study 3 (middle, a 20-week clinical trial), and study 2 (bottom, a 1-year observational study).
Figure 2Boxplot of participants’ data completeness (in %) excluding the period after discontinuation. Data completeness was defined as percentage of days with any GPS data and percentage of weeks with a completed survey or audio recording.
Figure 3Bar graph of data completeness per month in study (excluding the period after discontinuation), stratified by time-to-discontinuation of the participant (gray bar indicates time-to-discontinuation). Number of participants for each panel from left to right are as follows: N=7, 4, and 18 for study 1; N=20, 6, 10, 8, and 33 for study 2; and N=5, 1, 2, and 22 for study 3. Data completeness was defined as percentage of days with any GPS data and percentage of weeks with a completed survey or audio recording.