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A Simple Education Tool for Ventricular Assist Device Patients and Their Caregivers

Barber, Julie RN, BN; Leslie, Gavin PhD, RN, BAppSC, Post Grad Dip (Clin Nurs), FCNA

Journal of Cardiovascular Nursing: May/June 2015 - Volume 30 - Issue 3 - p E1–E10
doi: 10.1097/JCN.0000000000000122
ARTICLES: ONLINE ONLY
Free

Background: Ventricular assist devices (VADs) have become an important therapy in the management of patients with end-stage heart failure. Driveline infection is the most common late-onset complication in this group of patients. Patients and their caregivers require education regarding management of the driveline to reduce the risk of infection when they are discharged home with a VAD.

Purpose: The aim of this study was to develop an educational booklet on VAD driveline care for patients and their caregivers. A literature review was undertaken to explore the availability of patient education material pertaining to driveline management and to update evidence-informed knowledge that could potentially reduce infection rates in these patients. This information was evaluated by peers, patients, and caregivers to produce the final colored booklet.

Conclusions: Driveline care is not comprehensively discussed in the literature and lacks detail in the particulars of wound care, patient education, and the adaptation of driveline care to the patient’s home environment. An educational booklet was designed to convey what is currently known about preventing driveline infections to those who are responsible for providing the required daily care. Evaluation of patient education material by those using the material is essential. As with all written material, the information will require updating as new evidence becomes available.

Clinical Implications: Managing driveline infection risk for patients at home with extended therapy is a critical nursing issue in improving morbidity and mortality. After VAD implantation, patients and caregivers must be educated about the ongoing care of the driveline exit site to minimize the risk of infection. A rigorously developed and patient-evaluated educational booklet on driveline exit site care can be a valuable reference tool for patients and caregivers after hospital discharge.

Julie Barber, RN, BN Clinical Nurse Consultant, Advanced Heart Failure and Cardiac Transplant Service, Royal Perth Hospital, and School of Nursing and Midwifery, Curtin University, Perth, Western Australia.

Gavin Leslie, PhD, RN, BAppSC, Post Grad Dip (Clin Nurs), FCNA Professor Critical Care Nursing Head of Postgraduate Nursing Studies (joint appointment), School of Nursing and Midwifery, Curtin University, and Critical Care Division, Royal Perth Hospital, Perth, Western Australia.

The authors have no funding or conflicts of interest to disclose.

Correspondence Julie Barber, RN, BN, c/o Advanced Heart Failure and Cardiac Transplant Service, Level 4, South Block, Royal Perth Hospital, Wellington Street, Perth, Western Australia 6000 (julie.barber@health.wa.gov.au).

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Background

Heart failure (HF) is recognized as a major health problem worldwide that affects an estimated 23 million people,1 with people older than 70 years having a greater than 10% risk of being affected.2 The American Heart Association 2010 update estimated that there were 5.3 million people with HF in the United States alone, costing the healthcare system $39 billion per year.3

Numerous treatment modalities exist for HF, beginning with diuretic prescription alone escalating through a myriad of drug options including inotropes, cardiac resynchronization therapy, ventricular assist devices (VADs), and ultimately, heart transplantation for advanced HF. Advanced HF is characterized by patients with New York Heart Association class III or IV symptoms despite optimal therapy with medications.4

Survival after a diagnosis of HF has improved over the past 25 years; however, the death rate remains high: 50% diagnosed with HF will die within 5 years5,6 and those with New York Heart Association class III to IV HF have a 49% mortality at 1 year.7,8

A VAD is a surgically implanted pump that assists the failing heart in supplying blood to vital organs. Blood is pulled from the overburdened ventricle via an inflow cannula into the pump. The blood is then pushed back into the ascending aorta through an outflow graft (Figure 1). The pump is powered and controlled by external componentry connected via a percutaneous driveline.9–11 Ventricular assist devices have become an important adjunct in the management of patients with end-stage HF as a therapy to support patients until heart transplantation. More recently, VADs are now also used as a therapy for end-stage disease management without transplantation as an option, that is, destination therapy.12–15

FIGURE 1

FIGURE 1

Although HF survival with a VAD is improved when compared with medical management alone,16 this advanced therapy is not without risk of adverse events such as stroke, hemorrhage, and infection.10,15,16 Numerous device trials and retrospective reviews show infection to be a serious complication adversely affecting the patients’ quality of life with increased readmission rates, prolonged hospital stays, and increased healthcare costs.9–11,16–19

The emergence of long-term VAD therapy has also contributed to driveline site infection becoming the most common treatment complication, with between 39% and 100% of patients acquiring a driveline exit site infection after the first year of insertion.20–25 Managing driveline infection risk for patients with extended therapy is a critical nursing issue as the problem becomes cumulative over time, and once a driveline infection is established, it is difficult to treat, increasing morbidity, and is related to a worse survival outcome at 5 years (41% vs 70%).21

Typically, the driveline exit site dressing is initially attended by nursing staff while the patient is in the hospital. Nominated caregivers are educated and trained by the VAD coordinator and become responsible for driveline dressing care once the patient is discharged home. With modern VAD technology comprising of smaller portable systems, patients are often discharged from the hospital within 2 weeks of surgery. Education of the patient and caregivers should begin as early as possible after surgery at a basic level, and then with increasing complexity and reinforcement, as they grasp an understanding of what they are learning.10 It is vital that the patient and their caregiver are able to carry out driveline care effectively at home to reduce the risk of damage to the driveline and infection at the exit site.

The purpose of this article was to describe the development and evaluation of an evidence-informed booklet about driveline management for VAD patients and their caregivers at home.

Long-term VAD therapy is a relatively new area of practice, which continues to evolve. Written material is inexpensive to produce and update, which was an important factor when developing an educational tool for this group of patients. Many destination VAD patients and caregivers are elderly and may not be comfortable with electronic media. Written materials can be referred to while sitting in a hospital waiting area or at home without the need for Internet, computer, video, or DVD player. It remains fully portable and accessible.

Most patients with VADs are adults. When considering the educational needs of this patient group, adult learning principles were used.26 An explanation of why it was important to prevent driveline infection was provided in the booklet. The adult learner needs to understand why learning is important and how what they learn affects them. Providing written material allowed the patient and caregiver to initiate learning in their own time. This ensured an environment conducive to learning and the provision of materials and information that allowed self-direction. The booklet also allowed the patient and caregivers to use knowledge of their unique home situation and adapt driveline care accordingly while still maintaining asepsis. The booklet was designed for use in conjunction with practical education sessions provided by the VAD coordinator. Sessions were repeated to promote patient and caregiver competence and confidence.27,28 A condition of discharge from hospital is formally assessed competence in carrying out driveline care. This provides motivation to learn.

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Literature Review

Before the development of the booklet, a literature review using the Cumulative Index to Nursing & Allied Health Literature, Medline (Ovid), and ProQuest was undertaken to gain information regarding current practice in the management of drivelines that would assist in teaching patients and their caregivers how to undertake driveline care at home. The review was primarily limited to adult patients implanted with VADs. The timeframe was limited initially to the past 5 years but was expanded to 15 years when historical information or comparison was required. The search fields included keywords that were used in multiple combinations—LVAD, VAD, ventricular assist device, drive line, percutaneous lead, drive line exit site care, percutaneous lead care, infection, patient education, discharge planning, outpatient management, community, wound healing, nutrition, and aseptic technique. The searches were limited to the keywords being located in either the title or the abstract. In some instances, references cited in retrieved articles were used to broaden understanding of the topic. The articles were all in the English language. Of 128 articles retrieved, the author found 63 references that provided information significant to the development of the booklet. The articles were not graded because many of the advices and recommendations derived from the literature come from level II-3 and level III evidence. Currently, there is no randomized controlled, cohort, or case controlled trials evaluating VAD driveline management.

Most of the literature about VAD driveline infections is epidemiological and directed toward the inpatient experience. There is limited material published regarding educational materials, content, and methods undertaken to ensure that the risk of infection is minimized for patients at home. Articles were selected if increased or decreased infection-related outcomes were identified. Some of these findings were contradictory. Acknowledged as such in the literature review, these contradictions were not published in the patient booklet, for example, whether elevated patient body mass index increases or decreases infection risk. The literature review revealed that certain factors make patients more susceptible to driveline infections, such as late detection,9,23,29 excessive movement or trauma at the exit site,21,23,24 poor nutritional status,30,31 and ambiguous wound dressing techniques13,17,24,25,30,32 (Table 1). These findings formed the basic messages emphasized in the booklet.

TABLE 1

TABLE 1

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Key Recommendations of Driveline Care

Early Identification of Driveline Infection

Early detection and treatment can prevent serious migration of the infection into deeper tissues and even the pump pocket itself.24,25,33 Clinical signs of driveline exit site infection were identified as heat, erythema, pain, induration, edema, and purulence of the subcutaneous tissue surrounding the device exit site, accompanied by general nonhealing of the site itself,10 with or without a systemic patient temperature of more than 38°C.25

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Immobilization of the Driveline

A mobile and active patient is a goal of VAD therapy; however, this comes with an increased risk of driveline movement and damage. Recent advances in driveline technology such as new biomaterials to coat the driveline, reduced line diameters, improved surgical techniques, and wound care are all designed to limit trauma at the driveline exit site, which is the most common cause of late-onset infection.21 Contemporary drivelines are coated in velour to facilitate tissue adherence and granulation (Figure 2). When the driveline is not completely immobilized, there is constant friction and torsion, which may leave nonepithelized tissue continually exposed to pathogens, which in turn invites colonization and eventual infection.23,24,33

FIGURE 2

FIGURE 2

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The Role of Nutrition in Driveline Care

When assessing risk factors for determining outcomes after VAD implantation, poor nutritional status preoperatively was a predictor of infection risk and poorer overall prognosis.30,31 The high rate of infection that accompanies VAD therapy may be related to cardiac cachexia, which manifests with loss of appetite, hypoalbuminemia, skeletal muscle wasting, and loss of subcutaneous tissue in the presence of chronic HF.34 There is a chronic systemic inflammatory state that occurs with cardiac cachexia, which also impairs wound healing.35 Supplementation should be provided if the patient is unable to maintain adequate nutrition through diet alone.36 All patients should receive multivitamins and trace elements as per recommendations for healthy individuals.37

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Driveline Exit Site Dressing Technique

There is no consensus on topical applications, frequency of dressings, or the best technique used to undertake the dressing. Although care of the driveline by the patient and their caregiver is 1 of the most critical aspects for prevention of driveline-related infections in VAD therapy, there is a distinct lack of publications outlining evidence-informed practice in this area. There is no universally accepted protocol that addresses driveline wound care, and this may be due to there being no evidence from large driveline infection specific studies on which to base a standardized protocol (Table 1).

Many articles allude to the need for aseptic or sterile dressings and extensive education of staff and carers but fail to describe the guidelines and procedures used to accomplish this. The few articles that give some detail about driveline care focus on the inpatient experience and do not delineate between inpatient and outpatient care.

Descriptions such as sterile, aseptic, and clean are not well defined. In the areas of infection control and wound management, this is not a new problem. There remains some confusion over what has been falsely acknowledged for many years as a well understood, taught and practiced wound care technique. Since 2007, the National Health Service in the United Kingdom has adopted evidence-based guidelines for aseptic nontouch technique in an attempt to reduce healthcare-associated infections and standardize technique to avoid confusion surrounding aseptic wound dressings.38 These guidelines are slowly being adopted internationally and have been endorsed in Australia as the Australian Guidelines for the Prevention and Control of Infection in Healthcare.39 The approach to aseptic technique promoted in these guidelines is easily adapted to driveline care in hospital and in the community.

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Booklet Development

There were multiple steps in the development of this tool, which adhered to various content and design principles and organizational requirements to ensure its suitability for the target user. These steps included the following (Figure 3):

  • literature review
  • extraction of key recommendation of care
  • organizational approvals
  • booklet design and development
  • evaluation (peer and patient/caregiver)
FIGURE 3

FIGURE 3

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Content

Evidence-informed information that highlighted either an increase or a decrease in the incidence of infection was extracted from the literature and messages were constructed to convey these findings to patients and caregivers.

Messages included the following:

  • Identifying signs and symptoms of infection10,25
  • Importance of early reporting of signs and symptoms23,29
  • Minimizing trauma to the driveline21,24
  • Not showering until the site has healed37,40
  • Reducing cross contamination during home dressing changes38
  • Using the correct nontouch aseptic technique38
  • Maintaining a healthy weight with diet and regular exercise35,41,42
  • How driveline infection is managed32,37

In addition to these messages, the author included “housekeeping” information such as obtaining dressing supplies and service contact details.

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Readability

The content of the booklet was based on information initially written for health professionals. Altering this information for the patient and caregiver use was an important step in the development process. The document was written using Microsoft Word, which includes the Flesch-Kincaid Reading Ease and Grade Level43,44 within its word count application. The document was also entered into online software tools that calculated readability, including the Gunning Fog index,45 Flesch Kincaid Grade Level, Automated Readability Index,46 and Simple Measurement of Gobbledygook.47 These tools estimated the number of years of education required to understand the text easily on the first reading (Table 2). Common reading materials such as newspapers are written at a sixth to eighth grade reading level, which is the average adult reading level in developed countries.48 Multiple revisions of the booklet were undertaken using the online tool in an effort to target the reading level without compromising the content. The draft document submitted for design formatting had an average grade level of 8.6 and should be easily understood by most 13- to 15-year-olds.

TABLE 2

TABLE 2

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Peer Review

The initial draft document was forwarded for peer review by 2 VAD coordinators, 3 medical consultants and a dietician connected to the VAD program, and 2 wound specialist nurses. The reviewers suggested adding information to explain some of the messages in more detail and suggested extra images to show updated aseptic dressing technique. The second draft document was tabled at the Critical Care Nurse Practice Committee. These meetings are attended by senior specialist nurses and educators from areas such as the emergency department and intensive and coronary care. Amendments from this meeting related mainly to typographical corrections and queries relating to information that needed clarification to those not familiar with the outpatient VAD program.

The peer-amended draft was forwarded to the design department to allow the document and images to be formatted into a draft booklet for patients and carers to evaluate. The booklet adopted the same corporate colors and fonts as previously printed literature used within the department. It was important that the images matched the text to ensure the pictures conveyed the messages and instructions clearly. The final layout of graphics and text was conducted in collaboration with design experts, who also assisted with providing some of the illustrations and managing copyright issues.

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Organizational Approvals

Approval to undertake the project was obtained from both the nursing and medical heads of department. Permission to carry out an evaluation of the draft booklet by staff and patients was obtained from the hospital Quality and Safety Unit and reciprocated through the University Ethics Committee. Participation was voluntary and patients and caregivers were informed that their decision to participate would not affect their current or future care at the project site. Additional written consent was obtained from the patient who assisted in the photographic sessions used to illustrate the dressing technique in the booklet.

Approvals were subject to review by the hospital Public Relations Department to ensure compliance with local policies. Recommended changes were based on improving readability and following the Style Guide for Corporate Visual Identity.49 The Quality and Safety Unit also requested endorsement of the final print copy by the hospital Community Advisory Council, a hospital-based patient advocate group, as described in the Australian National Safety and Quality Health Service Standards.50

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Patient Evaluation

The goal of patient and caregiver evaluation was to use their perspective about managing driveline care at home, as they were considered experts in this environment.

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Questionnaire Development

A questionnaire was designed using a simple template from SurveyMonkey,51 an online survey tool that assists in both developing and evaluating survey responses. The questionnaire included 16 questions that assessed content, readability, and design, with emphasis on the usefulness and clarity of the information provided. The questions were close ended to gain specific data that would be easy to interpret. The simplified answer format was yes/no/unsure (Table 3).

TABLE 3

TABLE 3

To allow some qualitative analysis and to clarify the participant’s answers, the questions also provided space for comment in relation to the short answers provided. Participants were invited to write comments directly on the draft booklet provided with the questionnaire. Basic demographical questions were included, although participants could choose to omit this information if they had any concerns regarding self-identity.

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Participant Recruitment

All VAD patients and caregivers attending the project site as of October 2012 were invited to participate in the evaluation of the information booklet (10 patients and 7 carers). Patients were initially informed about the project during routine clinic visits. At a later visit, they were provided with a consent form and patient information, which conformed to both university and hospital requirements for the project. Most of these patients attended the hospital at least once a week as part of their rehabilitation program. Consenting participants were provided with the driveline booklet, a questionnaire, and a return nonidentified preaddressed envelope.

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Analysis and Results

Basic statistics and extraction of qualitative themes were used to analyze the data. The questionnaire results were manually entered into the SurveyMonkey analysis tool that enabled the results to be exported directly into a Word excel format. The comments and suggestions were added directly to the working copy of the booklet.

Sixteen questionnaires and booklets were returned. The mean age of the participants was 54.5 years and ranged from 26 to 74 years. There were 7 men and 9 women. The total days of driveline care of all participants was 6706 days, with a mean duration of 419 days.

In responding to the questionnaire, all of the participants understood the purpose of the booklet and felt that it explained how to seek further help and advice if required. The rationale for following the advice in the booklet was well defined for all but 1 of the participants, who was unsure and suggested that a section be added on the importance of preventing infection. None of the participants were upset by the contents of the booklet, commenting, “it is good to know that things can go wrong with the wound.” One participant wished he/she “had been given the book earlier,” and 15 participants felt that it would help them further manage their driveline at home.

Terminology such as sterile field, topical dressing, exudate, legumes, and forceps were identified by the participants as being “too technical” and needing simplification or explanation within the booklet. Two of the participants felt that some of the pages in the booklet were overcrowded, but all felt that the font size was adequate. Two participants could not identify the page numbers clearly.

All of the participants felt that there were enough pictures and diagrams in the booklet. The black-and-white pictures and photographs in the booklet concerned 2 of the participants, as they perceived this diminished the clarity of the photographs. Another comment was that there was no numbering of each photograph used to show multiple dressing steps.

The information and advice provided in the booklet were specific enough, with all but 1 of the patients and caregivers agreeing that these would complement the extensive practical training they were given. The remaining participants thought that the booklet needed to explain not just how to prevent infection but also why preventing infection was important. All participants were satisfied that the advice in the booklet was practical and achievable at home.

A quarter of the patients and caregivers had additional advice for carrying out the dressing procedure at home. All of the participants would recommend the booklet to other VAD patients, commenting, “the sooner they get it the better” and “I would give it to them straight after the operation.” It was suggested that the booklet be made available to nursing staff caring for these patients in hospital and general practitioners.

In addition to the 39 comments made on the questionnaires, there were 58 notations and suggestions made by patients and caregivers directly onto the draft booklets. Many of the comments simplified the dressing technique instructions further and highlighted small omissions of information that could confuse first-time readers. Patients and caregivers asked questions to clarify the instructions. For example, “Are her fingers touching the inside or outside of the dressing pack in the picture?” and “Do we change the adhesive tape every day?” Most of these additions were accepted and directly added to the final draft.

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Conclusions

The emergence of destination or long-term VAD therapy has seen driveline infection become the most common complication in this patient group. There is evolving evidence on what may affect driveline infection risk. The importance of preventing trauma to the driveline site by immobilizing the line is an important finding in reducing infection in long-term VAD patients. Poor nutritional status is a predictor of increased infection risk. Early identification and reporting of driveline exit site infection have been shown to reduce morbidity and mortality associated with serious VAD-related infections.

Driveline care is not comprehensively discussed in the literature and lacks detail in the particulars of wound care, patient education, and the adaptation of driveline care to the patient’s home environment. Most articles alluded to the need for aseptic or sterile dressings and extensive education of staff, patients, and caregivers but failed to describe the procedures, topical applications, or dressing frequency. There were no published articles outlining the various teaching methods used to ensure the patient and/or caregiver attempt to maintain the “clean” or “sterile” dressing technique in the home environment. This is not to say that VAD patients and caregivers are not instructed on how to care for their drivelines when they leave hospital, but evidence in the literature is sparse. The development of a booklet for patients and caregivers is not only an invaluable educational tool, it also is a documented record of the information made available to VAD patients and their caregivers. It conveys what is currently known about preventing VAD driveline infections to those who will be responsible for providing the care required on a daily basis. The booklet will also assist in making driveline care education consistent regardless of who delivers the information. Consistency with educational messages has been shown to improve patient compliance with treatment.52,53

It is the authors’ view that evaluation of patient education material by those using the material is essential. This is especially applicable in a specialized area of medical therapy that relies on extensive patient education to ensure successful patient outcomes.54,55 Despite the draft being peer reviewed, some of the terminology was considered “too technical” by the patients and caregivers. The group of 16 patients and caregivers who evaluated the booklet added valuable insight through their own experience in amassing 6706 dressing changes. From the results of the patient evaluation, it was obvious that patients and caregivers had much to offer from their personal experiences, and this was incorporated into the final booklet design.

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Limitations

The development and evaluation of the patient education booklet involved a small group of patients and caregivers who had been educated in the practices used at 1 center, albeit they were based on the best available evidence. All written educational material has a limited shelf life because of the need to constantly update the information provided as new evidence comes to light. A limited print of 50 copies of the booklet was planned to ensure that it is revised once the original batch is depleted. It is difficult to assess whether the booklet will be successful in terms of reducing infection among patients, but a study of driveline infection rates before and after implementation of the tool would be helpful in validating the tool.

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Clinical Implications

The most common complication in modern day VAD therapy is infection of the driveline site. The incidence of infection has been reported as being as high as 100% when duration of support is greater than 1 year, and once a driveline infection is established, it was difficult to treat, increased morbidity, and showed a poorer survival outcome at 5 years (41% vs 70%).21,25 Managing driveline infection risk for patients at home with extended therapy is a critical nursing issue in improving morbidity and mortality.

After VAD implantation, patients and caregivers must be educated meticulously in the ongoing care of the driveline exit site at home to minimize the risk of infection. Education of the patient and caregivers should begin as early as possible after surgery. Current evidence-informed information that demonstrates a decreased incidence of infection should be conveyed to patients and caregivers.

Written educational materials allow the patient and their caregiver to initiate the learning process and refer to information in their own time to consolidate and refresh what they have been taught.26,27 Published material is portable and relies on only sufficient ambient light for the user to access.

A rigorously developed and patient-evaluated educational booklet on driveline exit site care can be a valuable reference tool for patients and caregivers at home. It is also a reference for nursing staff ensuring consistency in the messages provided to patients and caregivers. End user evaluation of the tool makes it practical and more likely to be used by those for whom it was designed.

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What’s New and Important

  • Driveline infection has emerged as the most common complication associated with long term VAD therapy.
  • Information on the specifics of outpatient driveline care is not well documented in the literature to date. VAD implant centres should be encouraged to document their driveline care protocols and infection rates to allow benchmarking and best practice which will ultimately improve patient outcomes.
  • The utilization of patient and caregiver expertise in developing patient focused educational materials is a valuable source of information and should not be overlooked.
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Keywords:

aftercare; heart assist devices; heart failure; patient education

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