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Accepted for/Published in: JMIR Research Protocols

Date Submitted: Aug 11, 2021
Date Accepted: Oct 7, 2021

The final, peer-reviewed published version of this preprint can be found here:

An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial

Carlozzi N, Choi SW, Wu Z, Miner JA, Lyden AK, Graves C, Wang J, Sen S

An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial

JMIR Res Protoc 2021;10(12):e32842

DOI: 10.2196/32842

PMID: 34889775

PMCID: 8704108

Acceptability and feasibility of an app-based just-in-time-adaptive self-management intervention for care partners: Protocol for the CareQOL pilot trial

  • Noelle Carlozzi; 
  • Sung Won Choi; 
  • Zhenke Wu; 
  • Jennifer A. Miner; 
  • Angela K. Lyden; 
  • Christopher Graves; 
  • Jitao Wang; 
  • Srijan Sen

ABSTRACT

Background:

Care partners (i.e., informal family caregivers) of individuals with health problems are faced with considerable physical and emotional stress, often with substantial negative impact on the health-related quality of life (HRQOL) of both the care partner and care-recipient. Given that these individuals are often overwhelmed by their caregiving responsibilities, low burden self-management interventions are needed to support caregivers to ensure better patient outcomes.

Objective:

The primary objective of this study is to describe an intensive data collection protocol that involves the delivery of a personalized just-in-time adaptive intervention (JITAI) that incorporates passive mobile sensor data feedback (sleep and activity data from a Fitbit®), and real-time self-reporting of HRQOL via a study specific app called CareQOL to provide personalized feedback via app alert.

Methods:

Participants from three diverse care partner groups will be enrolled (care partners of persons with spinal cord injury [SCI]; care partners of persons with Huntington disease [HD]; and care partners of persons with hematopoietic cell transplantation [HCT]). Participants are randomized either to a control group, where they will wear the Fitbit® and provide daily reports of HRQOL over a three-month (90 day) period (without the personalized feedback), or the JITAI group, where they will wear the Fitbit®, provide daily reports of HRQOL and receive personalized pushes for 3 months. At the end of the study, participants complete a feasibility and acceptability questionnaire, and metrics regarding adherence and attrition will be calculated.

Results:

This trial opened for recruitment in November 2020. Data collection was completed in June 2021, and the primary results are expected to be published in winter 2021.

Conclusions:

This trial will determine the feasibility and acceptability of an intensive app-based intervention in three distinct caregiver groups: care partners for persons with a chronic condition that was caused by a traumatic event (i.e., SCI); 2) care partners for persons with a progressive, fatal neurodegenerative disease (i.e., HD); and 3) care partners for persons with an episodic cancer condition that requires intense, prolonged inpatient and outpatient treatment (persons with HCT). Clinical Trial: ClinicalTrial.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591


 Citation

Please cite as:

Carlozzi N, Choi SW, Wu Z, Miner JA, Lyden AK, Graves C, Wang J, Sen S

An App-Based Just-in-Time Adaptive Self-management Intervention for Care Partners (CareQOL): Protocol for a Pilot Trial

JMIR Res Protoc 2021;10(12):e32842

DOI: 10.2196/32842

PMID: 34889775

PMCID: 8704108

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