A novel smartphone application for the informal caregivers of cancer patients: Usability study

Abstract

Informal caregivers are a critical source of support for cancer patients. However, their perspectives are not routinely collected, despite health impacts related to the burden of caregiving. We created the TOGETHERCare smartphone application (app) to collect observer-reported outcomes regarding the cancer patient’s health and caregiver’s perceptions of their own mental and physical health, and to provide tips and resources for self-care and patient care. We enrolled 54 caregivers between October 2020 and March 2021 from Kaiser Permanente Northern California (KPNC), an integrated healthcare system. Fifty caregivers used the app for approximately 28 days. Usability and acceptability were assessed using questions from the Mobile App Rating Scale (MARS), the System Usability Scale (SUS), the Net Promoter Score (NPS), and semi-structured interviews. The caregivers’ mean age was 54.4 years, 38% were female and 36% were non-White. The SUS total mean score was 83.4 (SD = 14.2), for a percentile rank of 90–95 (“excellent”). Median MARS responses to the functionality questions were also high. The NPS score of 30 at the end of the study indicated that most caregivers would recommend the app. Themes from semi-structured interviews were consistent across the study period and indicated that the app was easy to use and helpful. Caregivers indicated a need for feedback from the app, suggested some changes to the wording of questions, the app’s visuals, and timing of notifications. This study demonstrated that caregivers are willing to complete frequent surveys about themselves and their patients. The app is unique because it provides a remote method to collect caregivers’ observations about the patient that may be useful for clinical care. To our knowledge, TOGETHERCare is the first mobile app developed specifically to capture adult cancer patient symptoms from the informal caregiver’s perspective. Future research will examine whether use of this app can help improve patient outcomes.

Health literacy, eHealth literacy and their association with burden, distress, and self-efficacy among cancer caregivers

“…There is little research against which to compare the level of adequate/inadequate health literacy in this sample. Although similar to a study of informal caregivers (Oakley-Girvan et al, 2023), a previous study carried out with cancer caregivers found a much higher proportion of cancer caregivers had limited health literacy compared to the current sample (Gabriel et al, 2021). This contrast may be explained by that study being conducted in a developing country with limited cancer services which may explain the poor health literacy among cancer caregivers (Gabriel et al, 2021).…”

Attitudes of psychiatrists toward telepsychiatry: A policy Delphi study

“…An increasing significance to the assimilation of telepsychiatry into health systems is driven by the emergence of multiple mobile applications that provide additional data concerning patients’ health and generating tighter communication between the different caretakers, and even informal caregivers . 42 Thus, apps that are unique to telepsychiatry could facilitate multiple advancements such as joint meetings of a group of caretakers exchanging ideas and data, 43 , 44 streaming of data collected from mobile-based apps that provide data concerning voice modulation, movement, money spending, social interactions, frequency of phone calls, and other data, 45 – 48 and also enable psychotherapeutic groups sessions 49 , 50 omitting the logistical requirements within a clinical facility.…”

Correlation Between Remote Symptom Reporting by Caregivers and Adverse Clinical Outcomes: Mixed Methods Study

“…The studied PRO-CTCAE symptoms were chosen by the study team of KPNC oncologists (RL and EN) based on the known or anticipated effects of the therapies in the study patient population. The following symptoms were selected for inclusion in the apps: nausea, anxiety, pain, sadness, vomiting, appetite, constipation, diarrhea, shortness of breath, numbness, insomnia, and fatigue [18]. We created a total count of each severe or very severe symptom reported by the participant on the PRO-CTCAE.…”