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

10.2196/32842 ◽  
2021 ◽  
Author(s):  
Noelle Carlozzi ◽  
Sung Won Choi ◽  
Zhenke Wu ◽  
Jennifer A. Miner ◽  
Angela K. Lyden ◽  
...  
2021 ◽  
Author(s):  
Noelle Carlozzi ◽  
Sung Won Choi ◽  
Zhenke Wu ◽  
Jennifer A. Miner ◽  
Angela K. Lyden ◽  
...  

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). CLINICALTRIAL ClinicalTrial.gov NCT04556591; https://clinicaltrials.gov/ct2/show/NCT04556591


Cancer ◽  
2018 ◽  
Vol 125 (7) ◽  
pp. 1176-1184 ◽  
Author(s):  
Hoda Badr ◽  
Krista Herbert ◽  
Karishma Chhabria ◽  
Vlad C. Sandulache ◽  
Elizabeth Y. Chiao ◽  
...  

Author(s):  
Shannon Phillips ◽  
Julie Kanter ◽  
Martina Mueller ◽  
Amy Gulledge ◽  
Kenneth Ruggiero ◽  
...  

Abstract Sickle cell disease (SCD) is an inherited hemoglobinopathy that leads to blood vessel occlusion and multiorgan complications, including pain, that may be experienced daily. Symptom management often begins at home, and tools are needed to support self-management strategies that can be implemented by children with SCD and families. The purpose of this study was to assess the feasibility of the mHealth self-management intervention (application) Voice Crisis Alert V2 for children with SCD and families. Feasibility assessment was guided by the Reach, Efficacy, Adoption, Implementation, and Maintenance framework. Data were collected with 60 dyads (children with SCD/caregivers) at four time points. Self-management data were collected via application use, and postintervention interviews were conducted. Analyses included descriptive statistics and constant comparison with directed content analysis. Recruitment was completed in 28 weeks, with 82% retention at end-of-intervention. Mobile Application Rating Scale scores and interview data indicated high satisfaction. From baseline to mid-intervention, 94% of dyads used the application (75% of total use); 45% used the application from mid-intervention to the end-of-intervention. Dyads made 2,384 actions in the application; the most commonly used features were recording health history and recording and tracking symptoms. Few reported issues with the application; most issues occurred early in the study and were corrected. After the intervention period was completed, 37% continued to use the application. Feasibility was confirmed by meeting recruitment and retention goals, high adoption of the application, and high reported satisfaction with the application. Challenges with sustained use were encountered, and areas for improvement were identified.


Author(s):  
Carolina G. Fritsch ◽  
Paulo H. Ferreira ◽  
Joanna L Prior ◽  
Giovana Vesentini ◽  
Patricia Schlotfeldt ◽  
...  

2021 ◽  
Vol 104 (2) ◽  
pp. 003685042110261
Author(s):  
Al Sawad Ayat Ali ◽  
Soo Kun Lim ◽  
Li Yoong Tang ◽  
Aneesa Abdul Rashid ◽  
Boon-How Chew

The complexity of chronic kidney disease (CKD) and its treatments have made self-management behaviors inevitably challenging. However, supplementing education with self-management skills may improve numerous health outcomes in people with nondialysis CKD. This study protocol describes a randomized controlled trial (RCT) aimed to evaluate the effects of a nurse-led self-management support program as an intervention for kidney disease knowledge and CKD self-management behaviors among people with pre-dialysis CKD. In Phase 1, people with CKD stage 3–4 and their family members are involved in co-designing, development and pilot testing of a theory-based self-management intervention. In Phase 2, we perform a cross-cultural adaptation of the Kidney Disease Knowledge Survey, CKD Self-Management and Self-efficacy for Managing Chronic Disease questionnaires. In Phase 3, a parallel RCT will be conducted to evaluate the intervention where 154 participants with CKD stage 3–4 will be randomly assigned to either the intervention ( n = 77) or control group ( n = 77). The intervention group will receive 6-week self-management program from a nurse-coach in addition to standard usual care, while the control group will receive only standard usual care. Outcome measures include kidney disease knowledge, CKD self-management behavior, self-efficacy, quality of life, blood pressure control and adherence to CKD diet as indicated by 24-h urine urea nitrogen, 24-h urine sodium and net endogenous acid production. Data will be collected at baseline and 12-week post-baseline. The between- and within-group intervention effects will be estimated using the Generalized Estimating Equations. The self-management intervention offers strategies to delay CKD progression and to encourage motivation to better self-manage at home. This study integrates self-management education and psychosocial support with culturally relevant scenarios, and evaluates important self-reported and objective outcomes. Clinical Trials Registration: www.ClinicalTrials.gov , identifier: NCT03974646.


2021 ◽  
Vol 50 (Supplement_1) ◽  
pp. i12-i42
Author(s):  
C Yang ◽  
Z Hui ◽  
S Zhu ◽  
X Wang ◽  
G Tang ◽  
...  

Abstract Introduction Medication self-management support has been recognised as an essential element in primary health care to promote medication adherence and health outcomes for older people with chronic conditions. A patient-centred intervention empowering patients and supporting medication self-management activities could benefit older people. This pilot study tested a newly developed medication self-management intervention for improving medication adherence among older people with multimorbidity. Method This was a two-arm randomised controlled trial. Older people with multimorbidity were recruited from a community healthcare centre in Changsha, China. Participants were randomly allocated to either a control group receiving usual care (n = 14), or to an intervention group receiving three face-to-face medication self-management sessions and two follow-up phone calls over six weeks, targeting behavioural determinants of adherence from the Information-Motivation-Behavioural skills model (n = 14). Feasibility was assessed through recruitment and retention rates, outcome measures collection, and intervention implementation. Follow-up data were measured at six weeks after baseline using patient-reported outcomes including medication adherence, medication self-management capabilities, treatment experiences, and quality of life. Preliminary effectiveness of the intervention was explored using generalised estimating equations. Results Of the 72 approached participants, 28 (38.89%) were eligible for study participation. In the intervention group, 13 participants (92.86%) completed follow-up and 10 (71.42%) completed all intervention sessions. Ten participants (71.42%) in the control group completed follow-up. The intervention was found to be acceptable by participants and the intervention nurse. Comparing with the control group, participants in the intervention group showed significant improvements in medication adherence (β = 0.26, 95%CI 0.12, 0.40, P < 0.001), medication knowledge (β = 4.43, 95%CI 1.11, 7.75, P = 0.009), and perceived necessity of medications (β = −2.84, 95%CI -5.67, −0.01, P = 0.049) at follow-up. Conclusions The nurse-led medication self-management intervention is feasible and acceptable among older people with multimorbidity. Preliminary results showed that the intervention may improve patients’ medication knowledge and beliefs and thus lead to improved adherence.


Dementia ◽  
2021 ◽  
pp. 147130122199728
Author(s):  
Sherry Dupuis ◽  
Carrie McAiney ◽  
Lisa Loiselle ◽  
Brenda Hounam ◽  
Jim Mann ◽  
...  

This article describes the use of a participatory action research (PAR) approach to developing a self-management resource for persons living with dementia and care partners. Despite growing evidence that persons with dementia are able to contribute in meaningful ways to decision-making about their care and life preferences, few opportunities exist for them to participate in the design of resources and services meant for them. There is also a need to support the self-management of persons living with dementia with the provision of accurate, high quality, user-friendly information. The Living Well with Dementia resource was developed through a partnership with persons with dementia, family members, Alzheimer Society representatives, primary care providers, and researchers. The methods used in the development of this resource are outlined in six steps employed in this process, from establishment of a PAR team to final resource creation. Informed by a whole systems approach, the resource brings together essential components of self-management into a comprehensive system of care and support for living. It empowers users to be active participants in the application of new knowledge to their lives. Better self-management has important implications for access to health care and quality of life for persons with dementia and care partners.


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