Abstract

Summary: Handoffs, the transfer of responsibility from one provider to another, commonly occur in intra-disciplinary silos that exclude patients. Research is rare about patients’ participation in handoffs — their thoughts about preferences, barriers, and specifics about how or when participation might occur. Research is lacking entirely about patients’ key information needs and priorities to support their potential participation in acute care handoffs. Thus, the purpose of this study is to examine handoffs on a surgical oncology unit from the patients’ perspective. This exploratory study could guide future research and development of collaborative patient-provider handoffs.
Keywords: Handoffs, e-patients, patient-centered care, collaborative care, qualitative research, EHR.
Citation: Staggers N, Benham-Hutchins M, Goncalves L, Langford-Heermann L. Exploring patient-centered handoffs in surgical oncology. J Participat Med. 2013 Jul 10; 5:e28.
Published: July 10, 2013.
Competing Interests: The authors have declared that no competing interests exist.

Introduction

With a new cancer diagnosis and postoperative care, oncology patients cope with many new complexities in self-care for which they may not be prepared. Nurses play a key role in supporting and augmenting patients’ own self-care knowledge and skills as they adapt to the changes in their health. These changes call for knowledge and skills regarding their condition as well as recognizing, allowing, and encouraging the personal control patients still have despite a serious diagnosis.

Patients’ participation in nursing handoffs reflects their right to partner in their own care.[1][2] This could improve care outcomes and communication accuracy while increasing the focus on patient preferences and promoting informed decision making.[2] Handoffs, the transfer of responsibility from one provider to another, commonly occur in intra-disciplinary silos that exclude patients. Research is rare about patients’ participation in handoffs — their thoughts about preferences, barriers, and specifics about how or when participation might occur. Research is lacking entirely about patients’ key information needs and priorities to support their potential participation in acute care handoffs. Thus, the purpose of this study is to examine handoffs on a surgical oncology unit from the patients’ perspective. This exploratory study could guide future research and development of collaborative patient-provider handoffs. This goal is consistent with national (United States) priorities about patient, the urgent need for patient focused tools as listed in a November 2011 Institute of Medicine report,[3] and international goals such as those in outlined the European Handover project.[4]

Patients on surgical oncology units are ideal research participants because surgery is often an early step in cancer care. Patient participation is clearly important for complex treatment decisions in oncology and self-care discussions, but little is known about patient participation in handoffs. Existing literature concentrates on the effect of provider-to-provider handoffs, known to create significant information omissions and errors.[3][4] Inadequate handoffs have been associated with sentinel events,[5] malpractice claims,[6] critical incidences,[7] uncertainty about patient care,[8] errors/near misses in novice nurses, incongruence between information and patients’ actual conditions,[9] and omissions requiring information searches before nurses could begin patient care.[10]

Contemporary nursing handoffs can include shift reports by the patient’s bedside although these remain typically provider-to-provider centered. Two studies reported that after implementation of bedside handoff, several measures from a routine, standardized instrument of overall hospital patient satisfaction increased: “how well nurses kept you informed;[11][13]” “how well staff worked together to care for you;[12]” and “staff effort to include you in decisions about your treatment.[11][13]” Detailed patients’ perspectives on handoffs are reported in only two studies to date, neither of which was completed in the United States nor included an oncology population.[2][14]

Appropriate information content for collaborative handoffs with patients as active participants has not been determined.[15] No published tools are available to guide patient participation in these kinds of activities. Even the definition of handoffs lacks patients’ perspectives: “A handoff is provider to provider information exchange including transfer of responsibility for the care of a patient.[16]” General checklists and protocols are available in the literature to support provider handoffs.[17][18][19] These help prevent providers from omitting entire information categories but do not include the contextually-sensitive and patient-centered information necessary for collaborative patient-centered handoffs.[20][21]

Investigators recommend standardizing[22] and computerizing all handoffs.[12][23]Yet the meaning of standardization is not clear[16] and research is not yet available to guide useful computerization of this complex activity,[24] especially from a patient perspective. Gaps in the research include (1) patient-centered approaches to handoffs, (2) information content and priorities to allow patient participation in handoffs, (3) research about inpatients having surgical oncology procedures, and (4) approaches that include examining handoffs on the same patient over time. Benefits of patient-centered handoffs could include: improved information accuracy, completeness and timeliness;[2] better care coordination; adherence to patient preferences, participation in treatment discussions and potentially making more informed decisions.[1][25][26]

The aim of this research was to determine inpatient oncology patients’ perceptions about participation in shift change handoffs, to elicit patients’ information priorities and identify tools to support future patient-provider handoffs. Perceptions were solicited about how and when patients would like to participate, any perceived facilitators and barriers and information content for collaborative handoffs.

Methods

Using purposeful sampling for this exploratory, descriptive study, the investigators incorporated methodological pluralism to interview patients and observe any artifacts they used to track care issues and their care questions. The Institutional Review Boards and hospital leaders granted approval for the study, and the team worked with unit managers during data collection procedures.

Setting

The study was conducted at a large cancer center in the western United States; its 25-bed inpatient general surgery unit was the data collection site. This unit admits approximately 460 patients per month for ear-nose-throat, thyroid, colorectal, prostate, gastrointestinal, Whipple, and cardiothoracic surgical procedures.

Participant Selection Criteria

Purposeful sampling with maximum variation was employed to select 20 patients across (1) demographic characteristics, (2) levels of care complexity (comorbidities, no comorbidities), (3) types of surgical procedures and (4) recovery course (routine, non-routine). The authors collaborated with the nurse manager and charge nurses on the patient care unit to apply selection criteria to potential study participants. Patient inclusion criteria were: adult (age 18-85), ability to converse in English, willingness to participate, and cognitive capabilities and medical condition conducive to participation.

Study Procedures

The team used a multimethod approach for data collection: naturalistic observations, interviews, field notes, and artifact (tool) capture. Patients were asked to complete demographic forms with the following data: age, educational level, number of times as an inpatient at the facility, surgical procedure, and number of days since their day of surgery.

After obtaining informed consent from participants, two of the authors (ns and lh) conducted and audio-recorded patient interviews in the patients’ rooms, typically at the bedside. A scripted interview guide, available from the authors, was developed to standardize the questions and expected probes. Three major topics were explored: preferences about participating in handoffs/perceived barriers, information requirements and any tools inpatients use now such as paper, computerized tools, or whiteboards in the room. The interview questions were crafted by integrating material from a literature review [26][27][28][29] and from a discussion with the cancer center’s director of patient and family support. The questions were reviewed by the team, piloted, and honed.

For patients who indicated they used tools, the team audio-recorded participants using “think aloud”[30] methods to describe tool usage, organization, content and utility.

Additionally, the authors recorded field notes about the context of interviews and any tools in patients’ rooms such as communication whiteboards. The researchers de-identified paper tools and white boards and then photographed them.

Data Analysis

Interviews were transcribed by a professional transcription company and verified for accuracy against audio recordings by the research team. They were uploaded with artifact photos and field notes to a secure computing environment.

The authors analyzed the data using conventional content analysis [31] and the tool Atlas tiTM version 7.0.85. Qualitative content analysis was the most suitable for interview analyses because it is the least interpretive approach and it supports counting responses as appropriate.[32] Data analysis followed the three steps recommended by Bernhard and Ryan[33]: (1) first cycle provisional coding to establish definitions and boundaries among codes, (2) second cycle coding of all of the transcripts, and (3) third cycle consolidation of categories to examine the data for themes. Coding was recursive with the analysis cycling between first and second cycle coding. The team achieved consensus on the codes and their application. After second cycle coding, the authors individually reassessed all transcripts for coding consistency. The team then reviewed discrepancies to achieve consensus on final coding.

Themes were inductively derived for third cycle coding. Categories were combined after team discussion, eg, patient information needs and family information needs. To maintain rigor throughout the analysis, features of trustworthiness were given careful attention: confirmability to maintain neutrality and remain true to the participants’ views; auditability as it pertains to the process of inquiry, findings, interpretations, and recommendations; credibility via member checks.[32][33]

Results

Twenty-two patients were approached and 20 patients agreed to participate in the study. The mean age of the participants was 58.4 years with a range from 28-85. The sample included equal numbers of each gender. The majority of the sample (10) had completed some college-level coursework. Two held master’s degrees while two had not completed high school. Participants reported a variety of surgical procedures typical of the patient care unit and most were on their second post-operative day. Interviews lasted an average of 10 minutes. The patient care unit did not employ bedside handoffs at the time of data collection in mid-2012.

The analysis resulted in 356 codes synthesized into 15 categories and three themes (see Table 1). The themes and their categories are described in the following sections.

Table 1. Themes and categories with code frequencies.
Staggers et al Table 1

Themes

Two of the resulting themes reflect the purposes of the study — patients’ preferences about participating in handoffs and their information needs. The third theme emerged from the data.

It Depends Upon How Sick I Am.
This theme focuses on patients’ perceptions about participating in handoffs. The theme includes six categories: level of participation by patients, frequency of patient participation, location of nurses’ handoffs, negotiation with patients after handoff, and patient barriers or facilitators to participating. Of the 20 patients, 15 expressed varying levels of interest in participating. Six of these were only equivocal about participating (“Yes, I might,” or “That’s fine,”) while four were firm about their participation, “I just think it would be better for all parties…so that way everybody knows what’s going on and the patient’s not left in the dark.” This subset thought they should be the first to know about a treatment change, to be “on the same page” and to be aware of “what’s going on.” This group saw the value of being included to ensure accurate communication and assuring that patients were informed about their own care. One patient participated in handoffs in another hospital and appreciated hearing about the planned care. Another thought communication would improve because nurses did not always seem to know information such as the specific care for his drains.

A polar opposite subset of four saw handoffs as the sole purview of providers saying, for example, “That’s their problem.” One of these patients abdicated participation with the statement that his role in handoffs was “to sleep” and others thought their participation was not necessary, that the nurses communicated well already. One was so frustrated with being frequently awakened that participation in handoffs was immediately dismissed.

Levels of anticipated participation varied from just listening to being active in the process. The majority preferred being asked questions and thus, being invited into the conversation. Otherwise, they would listen. One patient had a stronger opinion, “They ought to ask me questions about my opinions on certain things. After all, I am the patient.” Of those wanting to be a part of this process, patients wanted to participate in handoffs as often as possible. At minimum, two times a day was preferred, although most did not want to be awakened to participate. Participating at the beginning and end of the day was deemed reasonable.

Facilitators and barriers to participation were evident. First, handoffs were thought to be primarily the nurses’ purview so patients’ participation needed to become a new, expected norm. Asking questions of the patient and explicitly inviting their participation were facilitators for participation. Several barriers emerged. Terms used in handoffs could be a barrier, “I wouldn’t know what they’re talking about. It wouldn’t do me much good.” Patients may be intimidated about participating because “they [nurses] know a lot more than I do.” One participant thought nurses might feel that they were being evaluated in front of their peers. Last, extra time and staff might be needed to complete this new type of handoff. One patient, married to a health care provider, mentioned the need for institutional support from leadership.

The last barrier was an over-riding one to all participation in handoffs. Participation is wholly dependent upon patients’ conditions, whether they are sleeping and how many times they are being awakened, “If I need the rest, I don’t want them to wake me up.” “I don’t want people in here 24 hours a day and that’s when they come in…I want to be able to sleep good at night and I can’t…” and “It depends on where I am in the recovery process. If I’m just very uncomfortable, not feeling well at that particular point, to have more people coming and asking me even more questions would be painful.” Patients mentioned that chemotherapy and narcotic pain medications can cloud their thinking, but the primary sentiment was that it depended “upon how sick I am.”

I Want to Know Everything.
This theme includes five information-related categories: patient tools, shared EHR information, information needs, discharge information, and patient preferences. Current tool use included the whiteboards in patients’ rooms as well as paper and pen. All patient rooms were equipped with erasable white boards; however, usage varied. Ten used the whiteboard in some fashion. One patient wrote daily goals on the whiteboard, for example, the number of times to walk. These were marked off as they were completed so he and his family could track progress. The most common information on the whiteboards was the first names of the nurses and aides on the current shift and phone numbers for use in an emergency. Six participants did not use whiteboards, one because it was mounted out of view.

Four participants used pen and paper to track their care information. One patient had a notebook with extensive notes that included a variety of information – medications, appointments, lists of activities, and contact information for various providers. Another used a tool, currently left at home, provided by the National Cancer Society that included medications, information about chemotherapy, pain control measures, “people,” and foods not to eat. The others relied on non-stick notes and loose paper. None used an electronic device to track care information. Three patients had another person, such as a family member, tracking information.

The sample was evenly split about the need for an inpatient tool. Several memorized information, “I know what’s going on. It’s nothing I have to write down. I know day-to-day.” Ten patients saw the need for a tool, the trigger being the amount of information they needed to remember or whether information was not immediately clear.

None of the 20 participants had information from the EHR shared with them during handoffs or otherwise. All but one was open to this idea. “If there’s an electronic medical record…and what’s being put on there because it’s personal information and just to see it on there, that’ll be great.” Participants did not see this as an urgent need because they could obtain copies of their health information. “I can have them if I wish. Yes, if I wish to have them… I can get them anytime I want. I signed papers just the other day for them. They’re mine, whenever I want a printout or anything I want from here.”

The vast majority of patients (18/20) wanted to know all information about their bodies and their health, including prognosis and all information being communicated among health professionals. “I think you should be aware of everything.” “I think I would want to know everything.” “I want to know exactly what they’re doing.” Having this kind of information would help patients plan for the future and cope with the present. For example, being more open about inpatient information would help one patient know whether she needed to have her daughter come live with her after she leaves the hospital. Another said,

This is my body and I want to be aware of what’s going on. It might not be easy but it’s something I feel I should know. That way I can prepare for myself….If I didn’t know some of that information, I’d be going home alone and I probably wouldn’t make it. I need to be aware of everything.

Two participants preferred not to know information about prognosis, although they wanted all other information.

Patients mentioned specific categories of information needs. As inpatients, they wanted more information about medications. “For every pill they gave me, I’d like to know what these are for. I don’t just want to be ‘Here’s that; here’s your medication.’ I want to know which kind of pill it is.” “Sometimes I’d like to know what they’re feeding into your veins and why they do [it]” and “I’m probably going to take chemotherapy and we might like some guidelines on that. How people react to it and when it will start and that sort of thing.”

One patient had the nurses write the time of his last pain medication on the room’s white board. He could glance at it and know that he had, for example, two more hours until he could ask for another dose. This, he said, would prevent pain from “getting out of hand.” In addition to medications, participants mentioned wanting more information about:

  • Upcoming treatments and tests;
  • Treatment goals;
  • Wound care;
  • Test results;
  • How their inpatient recovery process compares to others; and
  • Explanations about health terms and conditions.

One patient wanted to know how her recovery process was in comparison to others. Was it normal? Taking longer? Two patients stated they typically did not understand what is discussed by health professionals but they handled it differently. One actively questioned, “What is this? What is palliative care? I don’t know what that means” while the other chose not to question at all.

Discharge planning was currently not a part of handoff information but was viewed as relevant by all but one participant. “See, I don’t know anything about when I’m discharged.” Patients want to be aware of “everything” so they can plan the transition from being cared for to performing their own care. “That way I can plan for myself.” “I want to have all that knowledge.” Specific information included:

  • Knowing when the discharge will happen;
  • Contact information for an emergency situation, for followup;
  • Who gave them discharge information;
  • Upcoming appointments;
  • Medications, chemotherapy;
  • Wound, incision care;
  • Staple removal;
  • Post-hospital facility such as rehabilitation;
  • Arranged home health care, home physical therapy; and
  • Any followup care.

The following statement exemplifies how handoffs and discharge planning are linked:

As long as everything is captured so that everyone’s on the same page, everyone receives the same communication, sometime what will happen is particularly at the end of one shift, some order will be placed and because of the transition, that hasn’t immediately been communicated. There’s some delay in discharge processing until that is processed through.

Last, most participants did not see a need to include their preferences in handoffs because they did not experience any difficulty in obtaining what they wanted. “…if I’ve made a suggestion, it was done.”

My Life Is In Their Hands.
This theme focuses on the participants’ perceptions of their own role, the nurses’ role and the care they have received. It was derived from four categories: Take Care of Me; Being a Good Patient; Perceptions of the Nurses’ Role; and Perceptions of Care. Participants expressed conflicting reactions to the seemingly autocratic hospital environment. Five patients surrendered to the perceived requirement to give up their autonomy and let providers care for them. These patients viewed compliance with implicit role requirements such as being a “good patient” as non-negotiable behaviors during hospitalization. This point of view is expressed clearly by one participant: “…I’ve been a good patient and done everything I was supposed to do today…” but another patient simultaneously expressed both frustration and acceptance of this perceived lack of control, “Sometimes you’re left in the dark. You don’t know what’s going on…” and “You just kind of put your life into their hands and say, ‘Here I am, take care of me while you’re here.'”

One patient indicated a desire to be actively involved because “It’s your body and it’s your health.” Others expressed feelings of vulnerability related to their dependence on caregivers or lack of familiarity with hospital processes. One expressed relief with the realization that “… somebody is actually paying attention to what’s going on” and “I didn’t know that they really watched how many times I’ve walked or been in the chair.” Another patient expressed surprise about the round the clock availability of caregivers, “They’re even up here late, especially if the buzzers go off. When you buzz them, they come right in, it doesn’t matter.”

Patients were careful to not overstep perceived boundaries, “I’m not supposed to go in there and stick my nose in there and say, ‘Hey, that’s wrong,’ I let them come to me and we discuss it.” Being complacent and cooperative was perceived as a prerequisite for receiving good care. Participants referred to how “nice” the nurses or doctors were and they did not want to “bother” the providers. Active involvement and asking questions was viewed as challenging the authority or demeanor of the provider: “…I don’t want to pick on them because they are wonderful.”

Six patients made statements indicating confusion about the role of the nurse. For example, they confused nurses and nursing assistants, “…at shift change, they always come in and do your vitals” and viewed nurses as subservient to physicians, “I don’t think I was asked about treatment. They just did your vitals and whatever the doctor told them to do, I guess.” This impression, that nurses only did what the doctors told them, is also exemplified by one participant who discussed dietary changes with a physician. The physician ordered the nurses to “make me yogurt milkshakes and the nurses would deliver them to me personally.” This perceived lack of nursing autonomy was verbalized by multiple patients in phrases such as, “He [doctor] tells them what to do” and “There has not, in this stay up to this point, been much latitude in what they [nurses] can do.”

Patients’ perceptions of care were influenced by their knowledge of the health care environment and role of the nurses. When questioned about participation in shift change handoff activities, some participants wondered aloud about how and why they would participate. Some expressed confidence about the current process as evidenced by the amount of information collected or the level of knowledge on their care revealed by the oncoming shifts. Others wondered “if there’s something secret I don’t know” or that caregivers would be going through the motions. Frustration with attempts at participating was expressed by three participants who indicated they were not provided an opportunity to ask questions or only received partial answers.

Discussion

The results of this study indicate that the majority of oncology inpatients would like to participate regularly in nurses’ handoffs – as long as they are awake and feel well enough to do so. This positive attitude was echoed in findings from studies with non-oncology patients who participated in nursing handoffs in Australia [2] and Europe.[14] Two subsets in this study expressed firm opinions – one wanting to participate and the other seeing participation as not necessary or not part of their role as a patient. Overall, oncology inpatients saw more active participation as beneficial to improve communication and to plan for discharge. This would also alleviate patients from feeling like they are “in the dark” and help them understand inpatient care processes which were a mystery to some participants. It would also ease the abrupt change from being a passive recipient of care as an inpatient to suddenly assuming self-responsibility for all care upon discharge.

Expanding handoff communication to include patients is consistent with general directions in the e-patient movement [34] and efforts in the patient-centered outcomes research institute. This direction is also consistent with a major theory in nursing that advocates patients’ participation in their own care and patient/nurse mutual goal setting [35][36]. Nurses have a long tradition of working with patients to achieve self-efficacy, although this work has not yet been extended to handoffs. Last, patient satisfaction ratings may improve as was seen in the two earlier, less formal studies [2][14] and may be extended to other patient satisfaction ratings, eg Joint Commission in the US.

A small subset of patients did not want to participate in handoffs. Some were even surprised about us asking about patient participation. This could be attributed to the current health care culture that views clinicians as all-knowing and patients as passive recipients.[37] Obviously, this belief creates a challenge for obtaining consistent participation by patients. Nurses will need to learn techniques to encourage handoff participation for this subset, customizable based upon how fervent they are about not participating. A simple intervention could be establishing a goal of participation at least once a day or scheduling participation with a family member.

Although several wanted to be proactive, participants also discussed a more traditional role of feeling dependent, complacent and passive in order to not “rock the boat” while an inpatient. They did not want to overstep their perceived boundaries as a patient and felt that they had to cooperate to receive the best care. They felt vulnerable and “in the dark” about care processes. “I’m just living out in this world here. Really, all I do is have about four doctors come in and throw a bunch of questions at you and then they’re out the door.”

A major change is needed to move away from the more traditional patient roles characterized by dependency and vulnerability. Both nurses and patients need education and tactics for this change to occur. For example, expected behaviors for these new, proactive patient roles would need to be made explicit upon admission to the unit. Nurses need to know to invite patients into the handoff process by asking questions and making patients feel like they are a valued part of the process. The latter was also a finding in a study about patient participation in overall nursing care in Australia.[38] Institutional leaders would need to support this change, assure its even implementation, have policies in place to encourage patient participation in handoffs as well as other activities and support these new processes, especially during the initial transitions. Leaders need to be aware that patient-centered handoffs may be more time-consuming initially as nurses translate medical terminology into lay terms and explain implications of care decisions. Thus, effecting this change is a joint responsibility among patients, providers, and institutions.

The vast majority of participants want to know “everything” about their inpatient care, including prognosis. A subset was firm about being a part of handoffs, saying “…I’m the patient, after all.” Patients would like to see discharge planning and medications in particular as part of the information exchanged during handoffs. The importance of including medication information in handoffs is consistent with findings from Australia.[39] Patient knowledge about discharge plans, medications, and self-care needs should support a smooth transition from the hospital to home.

At first glance, two themes seem contradictory (patients wanting to know all information and yet conveying perceptions about being powerless). Rather than being contradictory, these may show patient readiness for change (wanting information) although they are stymied by the current hospital culture.

Most participants found information on the room whiteboard helpful, especially the names of providers, but usage varied. None of the participants used electronic tools, and only four used paper and pen to track information. On the other hand, no participants used electronic devices, which the authors expected would be the case for at least for some of the participants. The reasons for this might be that inpatient care was not deemed complex enough to require a tool other than paper or this sample may not be technologically savvy.

Informatics implications from this study are several. Patients want to know “everything” but only about half see the need for any tool to manage inpatient care. This group did not mention the need for an electronic device or tool. There are several possible reasons for this: being a “good patient,” lack of knowledge about potential tools and the absence of devices in patients’ rooms. A tailored, concise tool to support inpatients during handoffs may be useful. Optimizing the use of the room whiteboard would be fruitful, making its use more consistent, and making whiteboards electronic. Electronic whiteboards could be integrated with the patient’s EHR. A more dynamic tool could allow patients and families to post questions for the health care team to address. Family members also could be informed of the patients’ status through electronic means. This kind of tool could bridge the current divide in care responsibilities from inpatient to discharge. A more complex patient tool to manage the continuum of oncology care across environments is needed spanning home, clinic, infusion center, inpatient, and/or hospice.

Conclusions, Future Directions, and Limitations

To our knowledge, this is the first study about handoff participation for oncology inpatients and for patient perspectives in the United States. Expanding handoffs to include inpatients would be well supported by most oncology patients but will require substantial changes in behavior on the part of patients and nurses. Informatics implications include more creative and consistent use of the patients’ whiteboards or a tailored tool with a shared EHR. Patient participation in handoffs could be one part of a larger effort for inpatients to assume a larger role in self-care.

Future research might include developing and evaluating specific patient-centered content and processes to support handoffs. This could be integrated with exploratory work on outpatient decision aids.[40] More specific requirements for informatics tools are needed as well as information requirements and appropriate tools to support shared handoffs.

Limitations may affect the generalizability of the findings. The sample was more highly educated than most, which may reflect their willingness to participate in handoffs. Also, this study was completed in one cancer specialty hospital and findings may not be generalizable to other settings.

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Copyright: © 2013 Nancy Staggers, Marge Benham-Hutchins, Luciana Goncalves, and Laura Langford-Heermann. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.

 

 

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