Curr Heart Fail Rep DOI 10.1007/s11897-014-0201-0

SELF-CARE AND HEALTH OUTCOMES (T JAARSMA, SECTION EDITOR)

Learning Self-care After Left Ventricular Assist Device Implantation Naoko Kato & Tiny Jaarsma & Tuvia Ben Gal

# Springer Science+Business Media New York 2014

Abstract The number of heart failure (HF) patients living with a left ventricular assist device (LVAD) as destination therapy is increasing. Successful long-term LVAD support includes a high degree of self-care by the patient and their caregiver, and also requires long-term support from a multidisciplinary team. All three components of self-care deserve special attention once an HF patient receives an LVAD, including activities regarding self-care maintenance (activities related both to the device and lifestyle), self-care monitoring (e.g., monitoring for complications or distress), and self-care management (e.g., handling alarms or coping with living with the device). For patients to perform optimal self-care once they are discharged, they need optimal education that focuses on knowledge and skills through a collaborative, adult learning approach.

Keywords Left ventricular assist device . Self-care . Education . Monitoring . Management . Maintenance . Heart failure N. Kato : T. Jaarsma Department of Social and Welfare Studies, Faculty of Health Sciences, Linköping University, Linköping, Sweden N. Kato Department of Therapeutic Strategy for Heart Failure, The University of Tokyo Graduate School of Medicine, Tokyo, Japan N. Kato JSPS Postdoctoral Fellow for Research Abroad, Tokyo, Japan T. Ben Gal Heart Failure Unit, Cardiology Department, “Rabin” Medical Center, Petah Tikva, Israel T. Ben Gal (*) “Sackler” Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel e-mail: [email protected]

Introduction With a worldwide increase in the number of heart failure (HF) patients and improved diagnosis and management, more HF patients live longer and more patients may eventually become resistant to medical therapy [1–3]. In addition to optimal pharmacological therapy, the implantable cardiac defibrillator has had a significant effect on survival in HF patients by preventing arrhythmic deaths. These developments mean that more HF patients will eventually suffer from worsening end-stage HF symptoms. Furthermore, with the introduction of improved mechanical circulatory support technologies, most commonly the continuous-flow left ventricular assist device (LVAD), patients with more advanced HF can now significantly improve their chance of survival and quality of life [4–6]. The improved reliability and durability of the LVAD and the improved prognosis of HF patients supported with LVAD has led to an increase in the number of devices implanted worldwide, not only as a bridge to heart transplantation (HTx), but also as a bridge to transplant ability, recovery and, in the last years, as a permanent therapy (destination therapy, DT) [6]. After a rigorous screening period, implantation procedure, postoperative care, and an often extended recovery time in the hospital, patients are expected to take care of themselves again, adapt to their new situation, and integrate new selfcare behaviors in their lives. Successful long-term LVAD support includes comprehensive care by a multidisciplinary team and also requires a high degree of self-care by the patients [7•]. In this paper we describe the current literature that is related to self-care of LVAD patients, focusing on the time after discharge and the new self-care behaviors these patients have to learn following the LVAD implantation. We also describe approaches to patient education that might be helpful in teaching self-care to LVAD patients and their families.

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Destination Therapy with Ventricular Assist Device The LVAD mechanically supports circulation by increasing blood flow from the left ventricle into the aorta. Use of LVAD as DT means that the device is expected to provide lifelong or permanent support to patients with end-stage HF who are not candidates for HTx. The success rates of the new generation of LVADs are high compared to the outcomes of the older generation pulsatile devices [5], but there are still some challenges in using these new devices. The need for mechanical circulatory support is determined by the prognostic and functional capacity parameters, similar to the parameters of HTx candidates. Other similarities between the two groups include the presence of preserved or only mildly impaired kidney and liver function, the need for an optimal nutritional state, good social support (close caregiver), and proven or assumed ability to adhere to the pharmacological and non-pharmacological interventions and lifestyle modifications that are needed. The need for an extracorporeal energy supply is one of the main drawbacks with the new generation of LVADs. Furthermore, the risk of infections in the driveline exit site and the patient’s inability to lie on the side of the driveline exit site, swim, or take a bath impair quality of life in LVAD-supported patients [8•, 9, 10]. The need for anticoagulation therapy to prevent thrombotic events and the risk of bleeding, mainly from the gastrointestinal tract, can also influence quality of life in LVAD-supported patients [9, 11].

Self-Care Self-care is essential in the management of chronic illness and is defined as a process of maintaining health through healthpromoting practices and illness management [12••]. Self-care is performed in both healthy and ill states and can change during the course of the disease, for example in times of decline, if comorbidities occur, or in cases of specific treatment (e.g., surgery or LVAD). Self-care includes three components: self-care maintenance, self-care monitoring, and self-care management. First, self-care maintenance is defined as those behaviors used by patients with a chronic illness to maintain physical and emotional stability. In HF patients, self-care maintenance includes activities such as taking medication, enjoying regular exercise, keeping a healthy diet, and getting regular flu shots. Second, self-care monitoring (the process of observing oneself for changes in symptoms and signs when they occur) in HF patients includes monitoring weight changes, or changes in symptoms. Third, self-care management is defined as the response to symptoms and signs. For HF patients this could mean that they adapt their diet or fluid prescription in accordance with their symptoms, decrease exercise levels in case of fatigue, or take extra diuretics if there are symptoms of fluid retention, such as sudden weight gain and dyspnea [13••, 14].

These general aspects of HF self-care also apply to LVAD patients, but there are additional self-care behaviors that the LVAD patient needs to perform to lead an optimal life with the device [7•]. For long-term success of the procedure, it is essential that the advised modifications of LVAD-supported patients’ self-care behaviors are implemented the same way as immunosuppressive therapy in HTx patients.

Self-Care in LVAD Patients I. Self-care maintenance Self-care maintenance refers to those behaviors performed to improve well-being, preserve health, or maintain physical and emotional stability [12••]. These behaviors can be related to lifestyle or the medical regimen, and they may be imposed by health-care professionals or chosen by the patients in order to meet their own goals. For LVAD patients, several specific maintenance behaviors related to the LVAD system and the consequences of treatment or related to lifestyle are needed (Fig. 1). LVAD care LVAD System Operation After discharge, LVAD patients and caregivers assume responsibility for the daily care and monitoring of the LVAD function. Living with the LVAD includes managing the device and the equipment, as well as securing an adequate constant power supply. –



System maintenance: Patients and caregivers need to maintain the system controller, power module (PM), and batteries [15, 16, 17•, 18]. They must also check cables and connectors for damage, and vacuum the power base unit (PBU) fan and other equipment [16, 18]. Secure adequate power: The LVAD needs adequate power at all times since a loss of power will cause the pump to stop, with serious consequences. Patients need to learn proper procedures for switching between power sources (from batteries to PBU/PM, PBU/PM to batteries, and replacing batteries), and for estimating charge levels during battery-powered operation [15, 16, 19]. In order to deal with a prolonged power disruption, patients must keep the backup controller, charged spare batteries, battery clips with cables, and emergency ID card with them at all times [15, 19–21]. Securing adequate power is of major concern, both in terms of being aware to recharge the batteries (psychological dependence), and in terms of being capable of doing that (physical abilities) [15]. An assessment of the patient’s abilities (manual, cognitive) should be

Curr Heart Fail Rep Fig. 1 Self-care in LVAD patients

performed before offering LVAD support. For example, a dextral patient with right hemiparesis might not be able to change the batteries. With regard to the feeling of dependence on a machine and adequate power, one can reflect that post-HTx patients perceive their transplanted organ in a similar way; it helps them survive, but it is also unpredictable and it is not really theirs. LVADsupported patients’ lives depend on the proper functioning of a foreign device, a pair of batteries and uninterrupted electrical supply. Patients should be prepared for that reality, preferably before the implantation of the device.



on heavy clothing, coats or jackets, patients should take care to avoid kinking, bending, twisting or tugging on their percutaneous lead. Wound management: Dressing changes should be carried out regularly, according to a protocol [17•, 18, 26–28]. Patients should be aware of the critical need to prevent driveline infection by allowing only experienced nurses or caregivers to change the dressings on the driveline exit wound. Cleaning of the exit site must be gentle and not traumatic [15, 18, 26].

Lifestyle Percutaneous Lead Care

Hygiene and Personal Care

Percutaneous lead infection is the most common type of LVAD-related infection [22, 23]. In some patients, lead infection may spread to multiple sites, with serious complications. It should be made clear to the patient and his/her caregivers that the infectious episode also increases the risk for pump thrombosis [24].

Personal hygiene and cleanliness is of vital importance for LVAD patients in order to prevent infections [15, 25••, 26]. LVAD patients are currently advised to avoid situations or environments that may increase the risk of infection, such as close contacts with sick people or day-care centers. However, they are not restricted from public gatherings [17•]. Good hygiene and personal care includes regular hand washing for anyone touching the LVAD equipment or driveline dressing [17•, 20]. Showers are allowed if there is proper equipment covering the surgery site after it has healed, but bathing is not possible with current LVADs [17•, 18, 21, 24]. Patients should be educated about what they need to do in order to keep the dressing, batteries, and controller dry while showering [18, 21, 25••].



Percutaneous lead Immobilization: The best infection prophylaxis is to protect the percutaneous lead from any movement at the exit site [15, 18, 25••, 26, 27]. Movement of the percutaneous lead will disrupt the subcutaneous tissue in-growth in the velour lining of the lead, resulting in infection. This tissue in-growth is delicate and easily damaged with minor trauma. When putting

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Adherence to Medication Adherence to pharmacological therapy is essential. In addition to HF medications [29•], LVAD patients require specific anticoagulation therapy to avoid thrombotic complications [15, 25••]. Anticoagulant levels should be strictly followed to avoid low ranges that cause a risk of pump thrombosis and high levels that cause a risk of bleeding, most commonly from the gastro-intestinal track, but also intracranial bleeding. Just as with all other patients on anti-coagulation, recurrent falls should be avoided [15, 25••]. Adaptation of Physical Activity – –



Physical exercise: Early mobilization and progressive exercise training in LVAD patients is safe and improves tolerance [30, 31]. Restriction from certain activities: Patients should be discouraged from taking part in strenuous activities or contact sports that could inadvertently lead to damage of the device or trauma to the driveline site [17•, 21]. In addition, patients should avoid any activities where they could potentially be immersed in water [21]. Prolonged exposure to cold or heat should be avoided [17•]. Patients should not be afraid to travel, but they should make medical staff aware of any trips, particularly if they involve trains, ships, or airplanes. Consideration for additional security procedures should be addressed [19, 21]. Sexual Activity: Patients may be interested in sexual activities [32] and sexual function can improve in patients after LVAD implantation [33]. Patients might need to be counseled on how to deal with equipment, and psychological or physical status, including practical issues such as the position of the driveline during intercourse, or fear of injury [32, 33]. Sexual counseling should also include the use of sexual performance enhancing agents and birth control, if relevant [8•, 34•].

Nutrition/Diet and Alcohol The nutrition status of LVAD patients should be checked periodically [18, 25••, 35, 36]. Due to the chronic nature of the disease, with recurrent hospitalizations, many patients with HF are malnourished at the time of the LVAD implantation. This calls for regular assessment of their nutrition status [37, 38]. Patients with cachexia or hypoalbuminemia may be predisposed to immune system dysfunction, limited functional capacity, impaired wound healing, and infection [22, 37, 39]. Some foods will increase or decrease the effect of

anticoagulation medications. Patients and caregivers should discuss what foods to avoid or limit with their dietician [17•]. Patients might be advised to limit their alcohol intake due to the effects that alcohol may have on their medications [13••]. As in all other circumstances, alcohol may impair patients’ ability to manage the device, change the batteries, and understand and react to the system alarms. Smoking Cessation Patients must stop smoking [13••, 25••]. All tobacco products cause arteries to constrict, decreasing the amount of blood that reaches the tissues and lungs and increasing systemic resistance. The increase in afterload reduces the effective cardiac output generated by the LVAD. Using tobacco products also impairs patients’ ability to fight infection. Passive smoking/second-hand smoke, which also affects patients’ blood vessels and pump function, should be avoided. Sleep and Rest Patients supported with an LVAD might need help to get optimal sleep and rest, since they often experience disturbed sleep because of the position of the driveline and the noise generated by the device [8•, 10, 40]. Patients should deal with physical limitations and discomfort associated with the driveline exit site [10]. Emotional distress such as anxiety and depression may be associated with an increased risk of sleep disruption [8•]. Optimization of Caregiver Well-Being As part of optimal self-care it is also important to support caregivers, e.g. spouses, adult children or grandchildren, significant others, and close friends [7•]. Caregivers of LVAD patients often help the patient to perform the prescribed self-care [41], including detecting early complications and trouble-shooting device malfunction. Caregivers also receive intense education and are expected to respond to device emergencies 24 hours a day. This can impose a significant physical, psychological, and financial strain on the caregivers [42–46]. Regular visits to clinics and unplanned visits to emergency rooms, or hospital readmissions due to complications can increase the financial burden on LVAD patients and their caregivers [42, 47]. Patients residing in rural communities may have to travel long distances for follow-up visits at specialized centers [42, 47]. Identifying impairments in caregivers’ well-being and initiating appropriate care or referral can sometimes be necessary.

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II. Self-care monitoring Device/System Function Monitoring – Patients and their caregivers need to check the wires, controllers, and batteries, as well as record all alarms. They also need to recognize the signs of pump malfunction as presented on the screen of the controller (e.g., low flow or high power) [15, 16, 21, 48]. Lead and Wound Monitoring Patients and caregivers need to visually inspect the percutaneous lead daily and recognize early signs of infection (e.g., redness, tenderness, inflammation, fever, unexplained fatigue or pain), erythema, or increased drainage at the exit site [16, 17•, 18, 21, 26, 48].



Symptoms and Signs LVAD patients need to pay special attention to their HF symptoms, particularly right ventricular failure, volume status, and blood pressure management [15, 16, 48].

fatigue, and pain [18, 21, 26]. Patients who are immunosuppressed or have diabetes mellitus may be at increased risk of infections [17•, 22]. Bleeding: LVAD-supported patients are at increased risk of bleeding from the gastrointestinal tract and nose bleeds (epistaxis). Patients must be aware of the symptoms and signs indicating bleeding tendency (e.g., nose and/or gum bleeding) [15, 18]. There are several contributing factors, including anticoagulation, anti-platelet therapy, the formation of blood vessel malformation in the gut (arterial-venous malformations) and pump-related changes in blood clotting factors (Von-Willerbrand factor deficiency) [15, 17•]. Neurologic events: LVAD patients are at risk of neurological complications such as cerebrovascular accidents, transient ischemic attacks, and intracranial hemorrhages. These complications can be caused by blood clots originating in the pump, high blood pressure, older age, higher LVAD flow, and inadequate anticoagulation [15, 17•, 18]. Patients and caregivers must be aware of the symptoms and signs indicating neurological problems.

Psychological Distress –





HF symptoms and signs: Weight gain, swelling of the legs and abdomen, and dyspnea should be monitored [15, 17•]. Inadequate filling of the LVAD and reduced blood flow can lead to weakness, poor appetite, and organ dysfunction [17•]. Volume status: LVAD patients can become dehydrated because they continue to limit their oral fluid intake and maintain a salt-restricted diet. To help monitor volume status, patients should check their weight daily and pay attention to symptoms such as orthostatic hypotension [15]. Blood pressure: The goal is to maintain the mean arterial blood pressure between 70 to 80 mmHg [15]. Uncontrolled arterial hypertension may decrease the effective cardiac output generated by the LVAD and cause cerebral events [18, 25••, 28]. The cardiac output generated by the device is afterload-dependent. Thus, in cases of increased blood pressure (possibly due to non-adherence to antihypertensive medical therapy), the effective cardiac output generated by the device is reduced, causing shortness of breath and other signs of HF. Maintaining ideal blood pressure is also imperative to preventing end-organ damage [18, 25••, 28].





Psychological distress: LVAD-supported patients suffer significantly from psychological distress such as anxiety and depression [49]. Although most patients experience better quality of life after an LVAD implantation [8•, 50], it is still reduced when compared with the quality of life of heart transplant recipients [51]. Furthermore, despite the improvement in physical function, many LVAD-supported patients still face a unique set of challenges and stressors, such as anxiety and fear of the complex management of the device, potential complications of the LVAD, fear of dying, the need to continuously stay connected either to batteries or the domestic power supply, uncertainty about their future, loss of control over their lives, concern about their caregiver, loss of work, and financial strain [52–54]. Psychiatric issues: LVAD-supported patients may face some psychiatric issues, including depression and adjustment disorder [52, 55, 56]. Using LVAD implantation as a bridge to transplantation or DT can influence psychiatric morbidity [55]. Psychiatric morbidity is associated with poor outcomes such as poor adherence to medical therapy and daily care of the device, increased risk of infection, and poor quality of life [23, 52, 55].

Side Effects and Complications Caregiver Burden –

Infection: Device infection can occur at any time during LVAD support. Patients and caregivers should recognize early signs of infection, such as fever, redness, tenderness,

Fear of device emergencies, depression, anxiety, and posttraumatic stress disorders have been described among

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caregivers of LVAD-supported patients. Most caregivers successfully incorporate the demands of caring for a family member with an LVAD into their daily lives [42, 43, 57], but the feeling of being overwhelmed and difficulties adjusting to the caregiving role are apparent in the early stages after the LVAD implantation [57]. The caregiving tasks can be perceived as complex for a lay-person and the extra burden can be very stressful for caregivers. This consequently affects their physical and psychosocial well-being [42–45, 57].

III. Self-care management Handling Alarms LVAD-supported patients and their caregivers should be able to recognize system alerts and alarms, and they need to know the appropriate measures to be taken. They also have to be able to contact the physician or LVAD coordinator when necessary [16, 19, 21].

Handling Emergencies and Contacting the LVAD/HF Team Patients and caregivers must be able to recognize and respond to emergency conditions and should know how to refer to training documents on handling emergencies. The patient should carry specific written instructions or an emergency identification card with contact numbers to the LVAD center for emergency notification at all times [19, 21].

Adaptation of Percutaneous Lead and Wound Management Patients should contact the LVAD team if signs of infection develop. The percutaneous lead stabilization should be reevaluated and revised [15, 20]. In cases of serous or purulent drainage from the driveline exit site, the frequency of dressing changes should be increased until the infection is resolved [26].

Adjustment of Medication, Rest, and Diet The pharmacological therapy should be optimized according to the patient’s volume status, blood pressure, heart rate, and level of anticoagulation [15, 25••]. Patients might need to be instructed to adjust the dose of their diuretics. Patients should be educated to stay well hydrated and to stop exercising if they experience dizziness, diaphoresis, severe dyspnea, or significant chest pain [58]. In addition, patients should stop exercising if there is an alarm signal from their pump, and they should be advised not to silence the alarm and continue exercising.

Coping in Patients and Caregivers –



Adjusting self-concept and self-image: The disfigurement caused by the LVAD surgery may affect the patient’s body image [11, 59]. If patients have difficulty modifying their self-concept and self-image, they may not attain the level of self-acceptance necessary to follow their medical regimen and they may find it difficult to preserve their psycho-socialsexual relationships [11, 59]. Coping: Patients require multiple lifestyle adjustments to incorporate LVAD care into their daily lives. Some patients use a positive coping style (e.g., optimistic, self-reliant, and supporting), whereas others use a negative coping style (e.g., fatalistic, evasive, and emotive). These adjustments sometimes cause fear and anxiety, especially in the early stages after the operation [9–11, 32, 40, 60–62]. In order for caregivers to effectively actualize the caregiving role, they use coping skills such as positive thinking, hope, acceptance, and the development of a routine [43, 45, 57]. Having a supportive family structure is an important social support for caregivers [44, 45]. Respite care for caregivers who live together with LVAD patients might sometimes be necessary [42, 63].

Education About Self-Care in LVAD Patients Effective education requires a collaborative, multidisciplinary team approach that extends to the LVAD patients, their family members and in some cases, other companions [7•, 15, 25••]. Education on proper self-care and system operation, with an emphasis on meticulous care of the percutaneous lead and exit site, should begin pre-operatively. Once discharged from the intensive care unit, patients should start practicing battery exchange, familiarize themselves with the dressing exchange, and practice safe maintenance of self-hygiene. The patient and caregivers should initially learn basic device management. The complexity of this training can increase as they are able to demonstrate an understanding of LVAD knowledge and skills. Eventually, patients might be required to demonstrate an understanding and competency of the LVAD in order to be discharged from the hospital. Education should cover all aspects of self-care, and should be repetitive and reinforced regularly to promote patient and caregiver competence and confidence [27, 64]. There are several education materials and manuals to help patients and their caregiver learn and reinforce what they have

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been taught [16]. Device-specific education materials, models of devices, and hands-on practice with the equipment increase patient and family awareness of the surgery and post-operative expectations [16, 21, 65]. Most educational sessions focus on transition of knowledge and basic skill building. However, it should be recognized that transfer of pure knowledge and training of skills is not enough to ensure optimal self-care. One underlying process that makes self-care so complex is the need for decision-making and reflection or contemplation. It is vital to use adult learning principles to help build confidence to perform tasks that are essential for LVAD management. Adult learning includes the fact that adults need to know what, how, and why they learn. They need to pay attention, they need to identify previous knowledge, and must feel motivated to learn. Most pedagogical processes in health-care seem to be unplanned and embedded in treatment with vague or nonexistent goals. However, self-care may improve if structured pedagogical education based on adult learning principles is adopted [66]. It is important to note that education needs to be individualized by assessing the LVAD patient’s learning ability, educational level, possible barriers to learning, and readiness to learn. Patients’ self-care readiness must be thoroughly assessed [16]. Discharging an LVAD patient from the hospital requires a multidisciplinary approach and good communication across settings to ensure that the patient and caregiver are competent to manage the device in the community setting [65]. Creating a broad network of involved individuals maximizes support for the patients and can minimize the burden of the primary caregiver during longterm LVAD support [15].

research is needed on optimal assessment and improvement of LVAD-related self-care.

Compliance with Ethics Guidelines Conflict of Interest Naoko Kato, Tiny Jaarsma, and Tuvia Ben Gal declare that they have no conflicts of interest. Human and Animal Rights and Informed Consent This article does not contain any studies with human or animal subjects performed by any of the authors.

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Reflection/Conclusion Living with an LVAD imposes intense changes on patients and their families. Their prognosis, exercise tolerance, and symptoms are expected to improve. To live optimally with the LVAD, patients need to make complex changes to their lives and practice optimal self-care. In addition to HF self-care behavior, patients and their caregivers also need to learn and practice LVAD-specific self-care. To learn these self-care behaviors, a multidisciplinary adult learning approach is advocated. Nowadays, there are several local protocols, case reports, and manuals that describe what LVAD-supported patients need to know and do, but there is a lack of structured, evidence-based international literature on complete self-care and the optimal ways of learning this new self-care behavior. More

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Learning self-care after left ventricular assist device implantation.

The number of heart failure (HF) patients living with a left ventricular assist device (LVAD) as destination therapy is increasing. Successful long-te...
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