Feasibility and Acceptability of a mHealth Self-Management Intervention for Pediatric Transplant Families

2021 ◽  
pp. 019394592110246
Author(s):  
Stacee M. Lerret ◽  
Rachel Schiffman ◽  
Rosemary White-Traut ◽  
Barbara Medoff-Cooper ◽  
Sheikh Iqbal Ahamed ◽  
...  
Keyword(s):  
Family Members ◽  
Organ Transplant ◽  
Self Management ◽  
Family Quality Of Life ◽  
Solid Organ ◽  
Post Discharge ◽  
Management Intervention ◽  
Discharge Outcomes ◽  
Primary Family

Families of pediatric solid organ transplant recipients need ongoing education and support in the first 30 days following hospital discharge for the transplantation. The purpose of this report is to describe the feasibility, acceptability, and preliminary efficacy of a mHealth family-self management intervention, ( myFAMI), designed to improve post-discharge outcomes of coping, family quality of life, self-efficacy, family self-management, and utilization of health care resources. We enrolled 46 primary family members. myFAMI was feasible and acceptable; 81% (n=17/21) of family members completed the app at least 24/30 days (goal 80% completion rate). Family members generated 134 trigger alerts and received a nurse response within the goal timeframe of < 2 h 99% of the time. Although there were no significant differences between groups, primary outcomes were in the expected direction. The intervention was well received and is feasible for future post-discharge interventions for families of children who receive an organ transplant.

scholarly journals An mHealth App-Based Self-management Intervention for Family Members of Pediatric Transplant Recipients (myFAMI): Framework Design and Development Study (Preprint)

2021 ◽  
Author(s):  
Riddhiman Adib ◽  
Dipranjan Das ◽  
Sheikh Iqbal Ahamed ◽  
Stacee Marie Lerret
Keyword(s):  
Family Members ◽  
Self Management ◽  
Smartphone App ◽  
Solid Organ ◽  
Care Providers ◽  
Management Intervention ◽  
Transplant Patients ◽  
Web App ◽  
Survey Responses ◽  
The Web

BACKGROUND Solid-organ transplantation is the treatment of choice for children with end-stage organ failure. Ongoing recovery and medical management at home after transplant are important for recovery and transition to daily life. Smartphones are widely used and hold the potential for aiding in the establishment of mobile health (mHealth) protocols. Health care providers, nurses, and computer scientists collaboratively designed and developed mHealth family self-management intervention (myFAMI), a smartphone-based intervention app to promote a family self-management intervention for pediatric transplant patients’ families. OBJECTIVE This paper presents outcomes of the design stages and development actions of the myFAMI app framework, along with key challenges, limitations, and strengths. METHODS The myFAMI app framework is built upon a theory-based intervention for pediatric transplant patients, with aid from the action research (AR) methodology. Based on initially defined design motivation, the team of researchers collaboratively explored 4 research stages (research discussions, feedback and motivations, alpha testing, and deployment and release improvements) and developed features required for successful inauguration of the app in the real-world setting. RESULTS Deriving from app users and their functionalities, the myFAMI app framework is built with 2 primary components: the web app (for nurses’ and superadmin usage) and the smartphone app (for participant/family member usage). The web app stores survey responses and triggers alerts to nurses, when required, based on the family members’ response. The smartphone app presents the notifications sent from the server to the participants and captures survey responses. Both the web app and the smartphone app were built upon industry-standard software development frameworks and demonstrate great performance when deployed and used by study participants. CONCLUSIONS The paper summarizes a successful and efficient mHealth app-building process using a theory-based intervention in nursing and the AR methodology in computer science. Focusing on factors to improve efficiency enabled easy navigation of the app and collection of data. This work lays the foundation for researchers to carefully integrate necessary information (from the literature or experienced clinicians) to provide a robust and efficient solution and evaluate the acceptability, utility, and usability for similar studies in the future. INTERNATIONAL REGISTERED REPORT RR2-10.1002/nur.22010

scholarly journals Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
R. Shah ◽  
F. M. Ali ◽  
A. Y. Finlay ◽  
M. S. Salek
Keyword(s):  
Quality Of Life ◽  
Family Members ◽  
Unmet Need ◽  
Reliability And Validity ◽  
Chronic Health Condition ◽  
Family Quality Of Life ◽  
Good Reliability ◽  
Huge Impact ◽  
The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

scholarly journals Predictors of Long-Term Health-Related Quality of Life in Adolescent Solid Organ Transplant Recipients

2011 ◽  
Vol 36 (8) ◽  
pp. 891-901 ◽  
Author(s):  
Katie A. Devine ◽  
Bonney Reed-Knight ◽  
Kristin A. Loiselle ◽  
Laura E. Simons ◽  
Laura L. Mee ◽  
...  
Keyword(s):  
Organ Transplant ◽  
Solid Organ Transplant ◽  
Solid Organ ◽  
Health Related Quality ◽  
Transplant Recipients ◽  
Related Quality ◽  
Health Related ◽  
Solid Organ Transplant Recipients

Baseline Quality of Life and Anxiety in Solid Organ Transplant Recipients: A Pilot Study

2006 ◽  
Vol 32 (12) ◽  
pp. 1480-1485 ◽  
Author(s):  
FIONA O'REILLY ◽  
CARMEN TRAYWICK ◽  
MICHELLE L. PENNIE ◽  
JOVONNE K. FOSTER ◽  
SUEPHY C. CHEN
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Organ Transplant ◽  
Solid Organ Transplant ◽  
Solid Organ ◽  
Transplant Recipients ◽  
Organ Transplant Recipients ◽  
Solid Organ Transplant Recipients

Self-reported poor quality of sleep in solid organ transplant: A systematic review

2021 ◽  
pp. 100650
Author(s):  
Makayla Cordoza ◽  
Brittany Koons ◽  
Michael Perlis ◽  
Brian J. Anderson ◽  
Joshua M. Diamond ◽  
...  
Keyword(s):  
Systematic Review ◽  
Organ Transplant ◽  
Poor Quality ◽  
Solid Organ Transplant ◽  
Solid Organ ◽  
Quality Of Sleep

scholarly journals 2294 Do patient comorbidities impact the effectiveness of a COPD self-management program?

2018 ◽  
Vol 2 (S1) ◽  
pp. 41-41
Author(s):  
Emilia Galli Thurber ◽  
Hanan Aboumatar
Keyword(s):  
Quality Of Life ◽  
Patient Outcomes ◽  
The United States ◽  
Management Program ◽  
Emergency Department Visits ◽  
The Self ◽  
Self Management ◽  
Management Intervention ◽  
Comorbidity Burden

OBJECTIVES/SPECIFIC AIMS: Chronic obstructive pulmonary disease (COPD) is a leading cause of both hospitalizations and readmissions in the United States, and about 1 in 5 hospitalized patients with COPD will be readmitted within 30 days. COPD-focused self-management programs are frequently used to help patients better manage their symptoms and prevent hospitalization. However, while the majority of patients with COPD have at least one comorbidity, most trials of COPD self-management programs either excluded patients with significant comorbidities or did not analyze the impact of comorbidities on patient outcomes. Using data from the BREATHE trial of a COPD self-management program, this study aims to determine if patient post-intervention outcomes differ based on the intensity and type of patient comorbidities. METHODS/STUDY POPULATION: In total, 240 patients hospitalized for COPD were randomly assigned to either a comprehensive self-management intervention or usual transitional care. Primary outcomes for this trial were the number of COPD-related hospitalizations and emergency department visits at 6 months and changes in COPD-specific quality of life. To determine whether patient comorbidities modify the effect of the self-management intervention on readmission and quality of life outcomes, we will compare patient outcomes across groups stratified by comorbidity burden (Charlson Comorbidity Index) and type (baseline diagnosis of congestive heart failure, diabetes, and depression). In addition, we will use regression analysis with interaction terms to test for interaction between comorbidity burden/type and intervention assignment. RESULTS/ANTICIPATED RESULTS: We hypothesize that the effect of the self-management intervention will differ in patients with greater comorbidity burden due to competing medical demands for patients with multimorbidity. DISCUSSION/SIGNIFICANCE OF IMPACT: The results of this study will help clinicians better target disease-specific self-management programs to the groups of patients with COPD who are likely to receive the greatest benefit from this type of intervention.

Baseline Quality of Life and Anxiety in Solid Organ Transplant Recipients

2006 ◽  
Vol 32 (12) ◽  
pp. 1480-1485 ◽  
Author(s):  
FIONA OʼREILLY ◽  
CARMEN TRAYWICK ◽  
MICHELLE L. PENNIE ◽  
JOVONNE K. FOSTER ◽  
SUEPHY C. CHEN
Keyword(s):  
Quality Of Life ◽  
Organ Transplant ◽  
Solid Organ Transplant ◽  
Solid Organ ◽  
Transplant Recipients ◽  
Organ Transplant Recipients ◽  
Solid Organ Transplant Recipients
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