Introduction

Following major surgery, the first days after discharge are a vulnerable time for patients. This period of vulnerability has previously been described as a “post-hospital syndrome.”1 Symptoms, which were not present while in hospital, may arise at home, and patients must be able to discern whether these symptoms are a normal part of recovery or whether they indicate the development of a complication. Enhanced recovery after surgery (ERAS) programs, which include various evidence-based peri-operative interventions, have been shown to improve recovery leading to lower complication rates, decreased length of stay (LOS), and re-admission rates.2 With a shortened LOS, it is particularly important that ERAS patients are well informed about what symptoms they might experience during their convalesce, and understand which are associated with normal healing and those which may suggest a complication. Furthermore, both patients and their families require necessary education that promotes self-management, appropriate community support in place and has directions on whom to call if problems do occur.

Most ERAS programs have a strong emphasis on pre-operative education, so patients are well informed prior to admission and understand what care they might expect and what the expectations of them are.3,4 To the contrary, patients receive much less patient education prior to discharge. Consequently, patients may be inadequately educated with regard to potential complications, mitigating techniques for non-severe complications that arise at home, common concerns with the creation of an ostomy (ileostomy/colostomy), and how and when to follow-up with healthcare professionals. Greater understanding of the discharge process from a patient perspective may obviate the need for emergency room visits, unnecessary visits to the family physician, and or surgeon and also lead to higher patient satisfaction.5

While the in hospital, experience of ERAS patients has been evaluated,6 however, patient experience and their needs following discharge have not been evaluated. Thus, a survey was developed to ascertain the major concerns and satisfaction that ERAS patients had with the discharge planning process, their informational needs particularly for patients with newly created ostomies as well as what they regarded as appropriate and timely routine follow-up plans and plans if they should develop complications.

Methods

Study Design and Sample

Between 2012 and 2015, an ERAS program was implemented for patients undergoing elective colorectal surgery at Mount Sinai Hospital in Toronto, Canada. The iERAS program was based on guidelines that include pre-operative, intra-operative, and post-operative interventions.7 All patients were managed with the ERAS pathway and received pre-operative education, which included information about expectations while in the hospital and the anticipated 3-day LOS for colon surgery and 4-day LOS for rectal surgery. Patients received standard education and information at discharge.

While all patients were managed using the iERAS guideline recommendations, patient consent was required to collect demographic information and data regarding hospital stay and 30-day follow-up. Thus, only patients from whom we had collected data were included in the present study. The study was approved by the Mount Sinai Hospital Research Ethics Board.

Survey and Data Collection

A survey, which included questions relating to informational needs prior to and following discharge, was developed by the authors. Questions were created to capture the essence of the discharge process, with a focus on what information and education patients wanted prior to hospital discharge, and their views on follow-up plans, homecare experience, and overall comments and concerns they had following discharge from the hospital. Patients who had a new stoma were asked additional questions related to their care and satisfaction. The survey contained multiple choice questions, preference ranking, and open-ended questions. As well, at the end of the survey, space was left for patients to add any other comments. The survey contained four sections with a total of 22 questions. The sections asked questions on follow-up plans after leaving the hospital, how to manage problems at home, homecare (community support), and new ostomy. The survey can be found in Appendix.

The survey was mailed to the patients after discharge. An accompanying letter informed them about the purpose of the study that it was their option to complete the survey and that the information would be used to improve the discharge process. Patients were assured that confidentiality would be maintained. All participants received the survey by mail at their home addresses. A follow-up reminder was mailed at 4 weeks, and the survey was resent at 8 weeks.

Data Analysis

Patient demographic and clinical outcome information was obtained from the iERAS database. All survey data were entered into an Access Database and subsequently exported into Excel ™. Free-text responses were inputted verbatim and anonymized. Subsequently, free-text responses were analyzed using a thematic approach. The qualitative themes that emerged provided additional understanding to the quantitative data. Thus, the quantitative and qualitative data are presented together to provide a complete story of the patients’ experience.

Results

A total of 554 patients participated in the iERAS implementation program and had data collected. Of those, 18 patients had died, 37 patients had either moved or changed their home address, and three patients indicated they were not interested in completing the questionnaire. Thus, a total of 496 patients were mailed surveys, of which 222 (44.7%) patients completed the survey. Patient demographics are shown in Table 1.

Table 1 Patient demographics
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Discharge Information

Eighty-eight percent of participants indicated that they received information on what to expect after discharge. Of those who received information, 85% received it while in the hospital and 94% indicated that it was provided by a health care professional (nurse, doctor, or another health care provider). The information was provided in written format (87%) or verbally (74%). This closely aligned with what patients found to be the most helpful; 71% preferred written and 58% preferred verbal information.

Overall, 93% of respondents indicated that they were satisfied with the information on potential complications provided o them. However, patients varied in their awareness of complications that could occur after discharge as shown in Table 2. One patient remarked he would have liked additional information on potential complications including pain management, “Pain was a big problem when I left. I would have liked to be informed on how to treat [the pain] and how severe it should be and indications to get checked out.”

Table 2 Satisfaction with information and understanding of potential complications after discharge
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Despite most patients indicating satisfaction with the information they received, some patients commented that they wanted more information on what to expect post-operatively. One patient felt that she, “would have felt more comfortable with [my discharge] with additional nutritional information, especially how it affected diarrhea and constipation.” Similarly, another patient commented that he wanted additional information on what a so-called normal post-operative course is, including worries of post-surgical changes to his body and the timing of when bodily functions should return to pre-operative levels. One patient stated that “there should be information written on impact and length of recovery and what to expect in your day to day experience.”

Post-discharge Support

When asked about how to deal with potential complications once the patients were home, 68% of patients reported being advised to go to the emergency room, 53% were advised to call their surgeon’s office, and 30% were advised to call the surgical nurse. Several patients commented that they would have appreciated additional support once at home. One patient was not provided with the name or telephone number of whom to call and wrote, “a [telephone] number for follow-up concerns would have been helpful for me. I would have liked the contact information of someone to talk to for any questions I had.” While another patient was provided with a contact number, he still required additional support

“I had not had a bowel movement since surgery, and I had severe pain. Surgical nurse was away for days. There was no backup and my family doctor didn’t know what to do.”

In addition, 48% said they would have liked to have had contact information of any healthcare provider or that of the surgical nurse (47%). Some of the participants also identified that they would have liked a “go to” telephone number to call, linking them to a health care professional, with whom any potential problem could be discussed.

When asked about information seeking after discharge, some patients (20%) turned to the Internet for answers. The Internet was found to be minimally helpful by 30% of patients. A few patients turned to “Peer-to-Pee” blogs and found that these sites were supportive and informative, as is indicated by this patient’s experience “Some of the ‘tricks’ and suggestions from blogs of other patients were very useful. These are tried and successful.” However, other patients indicated the Internet was a source of confusion, where information was unreliable and inaccurate. This was in part linked to fears surrounding validity of online platforms “It is difficult to know what is valid and what is not. We often are drawn to information that confirms what we are thinking as opposed to what is factually correct.”

Discharge Planning, Follow-Up, and Home Care

Most patients (94%) were discharged home, and 90% felt ready to leave the hospital. Overall, 88% of patients were satisfied with their follow-up plans. Qualitative responses identified that out-of-town patients may require additional support. One patient commented that the discharge process could be enhanced by having “a section for patients who are out of town—mainly provide us with the operative notes, discharge summaries and any tests or bloodwork that needs to be done. This can be given to our family doctor who will manage us after the surgery.” In addition, while most patients commented that the discharge plan was adequate, they would have appreciated having more time to discuss the plan with a healthcare professional.

With regard to follow-up appointments, 73% of patients indicated that they were given an appointment date or instructions to call the surgeon’s office to book a follow-up appointment. Eighty-six percent of respondents saw their surgeon in follow-up within 6 weeks of their surgery, which aligned with their desire to be seen within this time frame. Only 17% wanted to be seen by the surgeon within the first 1–2 weeks following surgery. In addition, although 54% of patients indicated that they were given the surgical nurse’s contact information, only half of them reached out to her. Those who did found this contact to be helpful. Forty-one percent of patients indicated that they received a call from the enterostomal therapy nurse (ETN) 2 weeks following their surgery, and 92% found this to be helpful. Sixty-one percent of participants indicated that they received some form of homecare (including all patients who had a stoma) following discharge. Most participants (79%) were happy with their homecare experience. While the frequency of homecare visits varied, 79% of respondents stated that they received homecare every day or every other day. The average duration of homecare was 11 weeks (range 1–90 weeks). Most homecare involved skilled nursing care for wounds or stomas. Despite an overwhelmingly positive experience, participants raised important concerns regarding their homecare experience. These centered-on scheduling homecare visits, timing of activation, and concerns with individual nurses. Some patients felt homecare visits were essential to their recovery, and not having access to a trained nurse was felt to be a detriment to their recovery. One patient commented “The homecare took almost a week to start when I first arrived home from the hospital. I think it should be the first couple of days as I had issues with the flange. If this had been corrected sooner it possibly would have avoided an ER trip and an extra hospital stay.”

Patients with an Ostomy

A total of 82 (37%) patients had a new stoma created. All patients received in-hospital information and teaching on ostomy care from an ETN, 73% said they received instruction before admission, and 54% said they received instruction after surgery. Ward nurses (60%) and surgeons (29%) were also mentioned as sources of information for ostomy care. Ninety-three percent of patients were satisfied with the information they received on how to care for their new ostomy, and 78% felt they received adequate information on what to do if problems with their stoma were to develop at home. However, patients had variable knowledge of potential complications that might occur post-discharge (Table 3). While most patients felt well prepared to resolve complications, patients wanted more information on what was “normal” and expected post-operatively. One patient felt that they were “given loads of information on stoma care, skin care and the appliance. I don’t recall getting any information on normal output amounts or dehydration.”

Table 3 Patients’ knowledge of ostomy problems
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Additionally, 30% of patients stated they were not confident with caring for their stoma on discharge. Patients felt that they would have been better prepared at home if they had more in-person teaching sessions while in hospital “There should be more scheduled in-patient practice changing the appliance. Everyone was too busy or rushed to really teach me to practice changing my ostomy.” Patients also wanted more information on the required supplies and different options. One patient found that “I did not really understand the products to use [for my stoma]. I spent a lot of money on products that did not end up working as my stoma changed.”

With regard to post-discharge care, all patients with new ostomies were discharged with homecare. Patients were followed for a minimum of 6 weeks, with variability depending on the individual level of independence. Following discharge, 84% reported experiencing some form of problem with their ostomy. Of these, 75% sought help from the homecare nurse or by calling the ETN (42%) or surgical nurse (26%) at Mount Sinai Hospital. Twenty-three percent of patients indicated that they went to the emergency room.

Thematic analysis revealed additional concerns for patients with a new ostomy. Patients wanted more direct access to an ETN. In addition, a few patients commented on wanting additional emotional support. Many respondents indicated that an ostomy was a significant change in their lives, and that emotional support from both professionals and peers was essential to a full recovery. One patient suggested “there should be information that there are ostomy group meetings in the area, or information from ‘Ostomy Canada’. It’s nice to talk to people who have ‘been there’.”

Discussion

The need for discharge planning, education, and contact information is an increasingly important part of the care of surgical patients. Surgery is often performed on older patients with multiple comorbidities, and surgical procedures are often complex. These factors may challenge a smooth recovery process. In addition, ERAS programs and early discharge increase the need for in-depth education and planning as patients and their caregivers must assume earlier and greater responsibility for self-care.8 Providing adequate education and discharge planning can foster a trusting relationship between patients and the health care team and has also been shown to decrease emergency room visits and readmissions.9,10

Our study revealed that the majority of patients managed in an ERAS program were satisfied with the discharge information and instructions and follow-up care that they received. Patients indicated that both verbal and written information outlining what is considered normal and what complications might occur, as well as a contact number of a member of the health care team, are essential items in the discharge plan. While patients appreciated an early follow-up call from the surgical nurse or another member of the team, they felt that follow-up with their surgeon 6 weeks post-operatively was adequate. Most also felt that the homecare experience was largely positive. The homecare nurses were seen as pivotal in supporting their recovery from major surgery including assistance in their physical healing (wound care, ostomy care) as well as being a source of psychological support.

Our study also identified that patients with a new stoma have greater educational needs. The requirement for a stoma in association with colorectal surgery is known to delay discharge from hospital.11 Recently, results from a clinical trial demonstrated that patients within an ERAS program for colorectal surgery receiving pre-operative and post-operative stoma education from a qualified stoma nurse specialist were associated with a significantly shorter hospital LOS as compared to the “standard stoma education” group.12 Our results reveal that patients with newly created ostomies would like additional support including clear education on the post-operative period related to potential stoma complications and courses of action if such complications occur. In addition, new ostomy patients wanted contact information of an ETN. When problems occurred, the most common action taken by patients in our study was to discuss their symptoms with an ETN. This seemed to decrease the need to return to the emergency room as only 23% of respondents with new ostomies indicated that they had an emergency room visit to deal with complications. Horstman et al.13 also recommended that discharge information be provided in patient-centered discharge language and instructions, so as to help patients make effective decisions and post-discharge interactions with the healthcare system.

There is little evidence regarding what educational material should be provided to patients or the best way to provide this information.14 Coleman et al. found that there was variable uptake and understanding of discharge information.15 The discharge diagnosis and the complexity of the discharge instructions were associated with poor patient understanding.15 On the other hand, health literacy, cognition, and self-efficacy were important predictors of a patient’s understanding and they suggested that providing discharge information and education may need to be customized according to the individual patient. In our survey, patients were generally satisfied with the discharge information and education they received. The qualitative data, however, allowed patients to report their individual concerns and will be used to modify our discharge education and thereby recognize needs of individual patients. For instance, one patient suggested that a copy of the hospital summary should be given to all patients, particularly if they live in another part of the country. This is because if any problems did arise and the patient needed to be seen by other health care providers or at a different hospital; the caregivers might not have access to their reports, but the patient would be able to supply a hospital summary.

There are some limitations to our study. Although attempts were made to capture the vital elements of a patient’s discharge experience through our questionnaire, a thorough discussion with patients, families, and staff may have provided more key insights into the limitations of the ERAS discharge process. This might have encouraged more input from other key stakeholders, including the staff physicians and general surgery residents. Secondly, the survey was sent to individuals who had their care at one institution and the results may not be generalizable to other institutions. For instance, our hospital has a surgical nurse who calls high-risk patients following discharge and provides telephone assistance and advice to patients following discharge. This resource may not be available at other institutions, but most patients felt that having someone to call for concerns or reassurance was important. Thirdly, we acknowledge the potential limitation of a 44% response rate. It is possible that patients who did not respond may have had other key concerns with regard to education surrounding the discharge from the hospital that were not represented in the group who responded. Finally, the cohort accrual occurred between 2012 and 2014. The survey was sent to patients in 2015, and thus, there may be some recall bias. On the other hand, there were several strengths to the study. First, we collected both quantitative and qualitative data from the patients. Secondly, patients were enrolled in an ERAS program and, to our knowledge, our study is the first to attempt to understand the post-discharge needs of patients who are cared for using an ERAS pathway in a North American context.

Conclusion

Patient education is an essential part of the care of patients following major abdominal surgery, particularly, those cared for in an ERAS pathway. The reduced length of stay associated with ERAS further necessitates that patients have access to timely and accurate information during the transition from hospital to home. Our survey indicates that at a minimum, patients should receive information about normal post-operative convalescence, what complications might occur, have a contact number for a health care provider who is well informed of their hospitalization course and who can be contacted if patients have concerns. Finally, our survey suggests that patients should be provided with both verbal and written information indicating normal post-operative progress, possible post-operative complications, as well as a contact number of a member of the health care team.