Obstacles to Acquiring Quality of Life Assessments for Pediatric Ventricular Assist Device Support: Perspectives from VAD Coordinators

Hawkins, Beth; Priest, Marc; Murray, Jenna; Elias, Barbara; Mehegan, Mary; Lantz, J.; Shubert, A.; Cantor, Ryan S.; Koehl, Devin; Uzark, Karen

doi:10.1016/j.healun.2017.01.1004

Cited by 3 publications

(2 citation statements)

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“…Although the number of questionnaires currently being analyzed is sizable, there is concern that the overall sample is too biased and small to make general conclusions. In an effort to understand the obstacles of QOL data collection, Hawkins et al 4 completed a study of VAD coordinators to identify obstacles to administration of these forms. Reasons for incomplete pre-implant parental forms included patient being too sick and the coordinator too busy.…”

Section: Data Monitoring Initiatives: Device Exchange and Quality Of mentioning

confidence: 99%

Second annual Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) report: Pre-implant characteristics and outcomes

Blume

VanderPluym

Lorts

et al. 2018

The Journal of Heart and Lung Transplantation

124

105

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Section: Data Monitoring Initiatives: Device Exchange and Quality Of mentioning

confidence: 99%

Second annual Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) report: Pre-implant characteristics and outcomes

Blume

VanderPluym

Lorts

et al. 2018

The Journal of Heart and Lung Transplantation

124

105

View full text Add to dashboard Cite

show abstract

“…The main reason for not completing the survey pre‐implant was that the patient was “too sick,” and thus, the PedsQL instrument could not be applied. In a previous survey of VAD coordinators from Pedimacs centers regarding QOL forms, over 70% felt that the primary reason for incomplete pre‐implant forms was “inappropriate time to ask families/patients given the severity of illness and that the questions did not feel applicable at the time.” 29 Post‐implant, the main reasons cited for incomplete forms were administrative constraints (likely staffing and time constraints). Since many patients did not complete assessments at each time point (no longer with VAD or assessment not completed), the sample size at the three time points varied and there were limited data for analysis of changes in scores within patients over time.…”

Section: Discussionmentioning

confidence: 99%

Self‐reported quality of life in children with ventricular assist devices

Peng

Lowery

et al. 2022

Pediatric Transplantation

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Over the past decade, VADs have been increasingly utilized in children with end-stage heart failure 1,2 and have led to significantly improved survival in this population. 3,4 It is important, however, that success not be measured by mortality and morbidity alone. QOL is a multidimensional construct which includes physical, psychological, and social functioning. When effective, a VAD augments circulation, increases functional capacity, and decreases heart failure symptoms and these effects should be reflected in the assessment of the patient's QOL.Thus, QOL has emerged as an important outcome of VAD therapy.The positive impact that VADs have on QOL in adults is wellestablished. 5 QOL has been examined in children with heart disease, 6 children with heart failure, 7 and pediatric heart transplant

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Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience

et al. 2023

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Background: Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality and can be used to inform treatment. Despite the widescale use of PROs in adult cardiology, they are underutilised in paediatric cardiac care. This study describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young adult ventricular assist device population. Methods: The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) is a collaborative learning network comprised of 55 centres focused on improving clinical outcomes and the patient/family experience for children with heart failure and those supported by ventricular assist devices. The development of ACTION’s PRO programme via engagement with patient and parent stakeholders is described. Pilot feasibility, patient/parent and clinician feedback, and initial PRO findings of patients and families receiving paediatric ventricular assist support across six centres are detailed. Results: Thirty of the thirty-five eligible patients (85.7%) were enrolled in the PRO programme during the pilot study period. Clinicians and participating patients/parents reported positive experiences with the PRO pilot programme. The most common symptoms reported by patients/parents in the first month post-implant period included limitations in activities, dressing change distress, and post-operative pain. Poor sleep, dressing change distress, sadness, and fatigue were the most common symptoms endorsed >30 days post-implant. Parental sadness and worry were notable throughout the entirety of the post-implant experience. Conclusions: This multi-center ACTION learning network-based PRO programme demonstrated initial success in this six-center pilot study experience and yields important next steps for larger-scale PRO collection, research, and clinical intervention.

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Obstacles to Acquiring Quality of Life Assessments for Pediatric Ventricular Assist Device Support: Perspectives from VAD Coordinators

Cited by 3 publications

References 0 publications

Second annual Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) report: Pre-implant characteristics and outcomes

Second annual Pediatric Interagency Registry for Mechanical Circulatory Support (Pedimacs) report: Pre-implant characteristics and outcomes

Self‐reported quality of life in children with ventricular assist devices

Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience

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