The LVAD Self-Care Behaviour Scale

The development of the LVAD Self-Care Behavior Scale began with a narrative literature review that identified 56 self-care behaviors related to living with a Left Ventricular Assist Device (LVAD). These behaviors were drawn from both qualitative and quantitative studies as well as practical guidelines. Five qualitative studies contributed insights into the self-care experiences of patients and caregivers after LVAD implantation, highlighting issues such as dressing and showering, physical and psychological limitations, sterile dressing techniques, dealing with device-related problems, and the role of social support.

The Middle-Range Theory of Self-Care of Chronic Illness,1 was chosen as a fundamental theory of this scale. The theory includes three key components: self-care maintenance, self-care monitoring, and self-care management. A research team consisting of four nurses and one cardiologist reviewed the 56 items for overlap and relevance, reducing the list to 37 items that measures LVAD self-care behaviors.

Next, a two-round Delphi survey was conducted with 17 international experts in LVAD and heart failure care, including LVAD coordinators, nurse practitioners, cardiologists, and one surgeon. In the first round, 32 of the 37 items were rated as important by over 80% of panelists, and 33 were rated as relevant. Four items were removed due to being vague, overly subjective, or overlapping with others. For example, an item about avoiding infection was removed due to varied interpretations, but a more specific item about monitoring infection signs was retained. Several items were revised based on panel feedback, such as specifying alcohol limits (e.g., 1 unit/day for females, 2 units/day for males). Additionally, four new items were suggested by panelists: attending scheduled clinical visits, monitoring stroke symptoms, changing backup controller in case of emergency, and contacting an LVAD team when a patient is seen in another physician’s office or an emergency department. Two of these were included on the final scale.

In the second round of the Delphi survey, over 85% of panelists agreed to retain 30 high-importance items from the first round, but one item (item 35) was excluded due to overlap with item 7, resulting in 29 retained items. Of the 7 moderately important items, 5 (items 34, 36–39) were removed, while items 22 and 31 were reinstated after discussion despite partial agreement. Among 4 new proposed items, only 2 (items 18 and 24) were added based on majority support. As a result, the final version of the new LVAD Self-Care Behavior Scale included 33 items: 19 related to self-care maintenance, 10 to self-care monitoring, and 4 to self-care management.

Two response formats were considered: frequency of performing behaviors (“never” to “always”) and level of agreement (“totally disagree” to “totally agree”). The research team chose the frequency-based 5-point Likert scale, as it was easier for patients to use and aligned with standard self-care assessments in heart failure, hypertension,² and coronary heart disease.3

Finally, face validity was tested with 25 LVAD patients in Israel and Japan. The patients found the items understandable and relevant to their self-care practices, and without any difficulty in answering or interpreting the questions. The questionnaire took approximately 5–7 minutes to complete.