Pancreatic cancer is rare but has a high mortality rate.1 Because of the often advanced stage of cancer at diagnosis, most patients can only be offered palliative chemotherapy. The only hope for cure is surgical resection and adjuvant chemotherapy, which can only be offered to fewer than 20% of patients.2 Even after intentionally curative surgery and adjuvant chemotherapy, the prognosis is poor, with a median survival of 2 to 4 years, depending on tumor site.3,4
Pancreaticoduodenectomy is a procedure for patients with tumors in the head of the pancreas or in the periampullary region (duodenum, ampulla of Vater, or distal common bile duct).5 The surgery involves removal of the head of the pancreas, the duodenum, the distal common bile duct, and the gallbladder with or without preservation of the gastric antrum and pylorus.6 The hospital stay after this extensive surgery is approximately 9 to 14 days.7–9 The recovery period is long, and quality of life is reported to be considerably impaired after surgery but is gradually regained within the first 6 to 24 months.10–15 Common symptoms experienced after surgery are nausea and vomiting, fatigue, diarrhea, worry, and pain.11,14,16 Patients describe how the symptoms can lead to social isolation but also how they can be managed by using medications and self-care strategies and support from their family.16–18 However, it has been reported that patients after pancreaticoduodenectomy sometimes resign to their symptoms and use insufficient strategies, which requires a healthcare system where professionals are more vigilant for symptoms.17 The importance of support after discharge from healthcare is evident as patients no longer experience being cared for and lack someone with whom to discuss self-care strategies.18 Unmet supportive care needs, especially of a physical and psychological nature, but also regarding information and support from the healthcare system, are prominent in patients affected by pancreatic cancer.19 It has been concluded that future research and efforts need to focus on changing the healthcare system and services so that these needs are supported.19
It is stipulated in Swedish law that patients should be given the opportunity to participate in their own health management.20 The legislation focuses on decision making, but patient participation has been described to also include mutual communication with healthcare professionals where patients are listened to and their knowledge is respected, shared knowledge where patients get explanations for symptoms and procedures and also can tell professionals about their symptoms, and patients knowing how to manage their symptoms and provide self-care.21 It has been concluded that mobile health (mHealth) apps can support patients with chronic conditions in participating in their own health management and in making them feel secure and taken care of even outside the hospital.22 There are mHealth apps evaluating different self-management interventions that have shown the potential to improve symptom management, but most apps do not provide real-time interactions with healthcare professionals.23 However, it has been stated that there is limited research concerning the use of mHealth in cancer supportive care and how it can contribute to the creation of new care models.24 Within the research group, a generic interactive mHealth app (Interaktor) for smartphones and tablets that is designed to facilitate patient participation in their care has been developed. The app enables assessment and management of symptoms, as well as facilitating a dialogue and information and knowledge sharing between patients and healthcare professionals.
The app Interaktor was developed in cooperation with Health Navigator, a Swedish company specializing in healthcare management and new innovative care solutions. The app can be downloaded onto smartphones or tablets and requires a separate log-in. The content of Interaktor is generic and adjustable, depending on setting and situation. The components are a (1) regular assessment of self-reported symptoms and problems, (2) a connection to a monitoring Web interface, (3) a risk assessment model for alerts on frequent or distressing symptoms, (4) continuous access to evidence-based self-care advice and links to relevant Web sites for more information, and (5) graphs for the patients to view a history of their symptom reporting. The components have been developed in collaboration with patients and healthcare professionals to be meaningful and relevant.25 The structure of the symptom assessment is inspired by a standardized symptom questionnaire, and it assesses the occurrence, frequency, and distress level of a symptom.26,27 After completing the symptom assessment, the report is immediately sent to a secure server that is linked to a Web interface. In Interaktor, the patient can view the reports over time in graphs, and through the Web interface, healthcare professionals can monitor the reports. The patients have continuous access to self-care advice related to the assessed symptoms. If the risk assessment model triggers an alert, a text message (SMS) is sent to a mobile phone at the clinic where the alerted symptoms are viewed in the Web interface. Actions taken after alerts can be documented in the Web interface. Interaktor has shown feasibility for patients with prostate cancer undergoing radiotherapy28 and for older adults receiving home care.29
The aim of this study was to develop and test a version of the Interaktor app adapted for patients who have undergone pancreaticoduodenectomy.
The Medical Research Council framework for developing and evaluating complex interventions was the foundation for this project.30 The present study included the development of a pancreas version of Interaktor and a single-arm feasibility test to inform on acceptability, adherence to reporting, user behavior and experiences, technical safety, recruitment time, and sufficient training of participants before implementation of the app in a larger sample.
Ethical approval was given by the Regional Ethical Review Board in Stockholm, Sweden (dnr: 2011/1780).
Development of Interaktor—Pancreas Version
Twelve common symptoms and concerns important to assess in the target population were identified in our previous study.16 The included symptoms and concerns were fever, eating difficulties, nausea, vomiting, loose stool, constipation, pain, dizziness, fatigue, anxiety and worry, and problems with daily activities at home and outside the home. The patients are first asked about the occurrence of the symptom, and then they are asked to rate the frequency and the distress level of the symptom. For example, if the answer to the question “Have you had trouble eating in the past day?” is yes, the patient would be asked how often it occurs (almost never, sometimes, often, or almost always), followed by how distressing the symptom is (not at all, a little, rather much, or very much).
THE RISK ASSESSMENT MODEL
The risk assessment model for alerts (Table 1) was based on symptom occurrence and frequency. The model was created by the research group consisting of healthcare professionals with expertise in cancer and pancreatic surgery. The alerts were programed in 2 different ways, and some symptoms generate an alert after 1 report, and some generate an alert after being reported on several consecutive days. There were 2 kinds of alerts included in the app—yellow and red. A yellow alert indicates that the patient should be contacted the same day. In case of a red alert, the priority is higher, and contact should be initiated by the healthcare professional within an hour. Previous results from evaluating a version of Interaktor for use during radiotherapy for prostate cancer showed that the patients sometimes actively adjusted their symptom reporting to avoid a call from the nurse.31 Therefore, in the current version of the app, a function was developed whereby in case of an alert the patients receive a question asking whether they want to be contacted by a nurse. If choosing yes, an automatic SMS would be sent to a nurse. If choosing no, an SMS is not sent to the nurse, but the alert would still be visible to the nurse in the Web interface.
Twenty-two areas of different self-care advice were included in the pancreas version. These were identified by searches in the literature and in our previous study.16 The advice was based on the latest evidence and refers not only to the reported symptoms, for example, advice on nutrition and physical activity, but also to other areas of importance such as wound care and alcohol consumption. Through the self-care advice, the patients, if in need for more information, also have access to hyperlinks to Web sites considered to be evidence based.
The present study was performed at a specialized clinic at a university hospital with the highest volumes of pancreatic surgery in Sweden. Following pancreaticoduodenectomy, the patients are normally cared for on a surgical ward for 1 to 2 weeks and thereafter at a rehabilitation unit outside the hospital for 1 week. Standard care after discharge is that the patients should contact the clinic's outpatient unit if they feel the need to. Also, 1 month after discharge, the patients have an appointment with a surgeon at the outpatient unit. After this appointment, patients with a final diagnosis of malignant disease are referred to the oncology clinic to start adjuvant chemotherapy.
During a period of 18 weeks, all patients (n = 33) who were scheduled to undergo pancreaticoduodenectomy at the university hospital because of a suspected tumor in the pancreatic or periampullary region were screened for eligibility. Exclusion criteria were follow-up care not planned at the university hospital, unable to read and understand Swedish, or estimated to be discharged during a period when the outpatient unit was closed for 2 weeks over Christmas. Because only 1 nurse could be appointed to the study, it was determined, because of logistic reasons, that no more than 3 patients could be included at the same time. After the screening process, 17 patients were eligible before surgery. All but one, who could not be reached, were asked to use the app for 4 weeks starting the first day at home after discharge following surgery. Four patients declined, 5 patients could not be included after surgery for different reasons, and 1 patient started to use the app but dropped out after being readmitted after 3 days at home. Thus, 6 patients were included in the study (Figure 1).
One nurse at the surgical outpatient unit was asked to respond to alerts from all included patients.
The patients were supplied with a smartphone with the app installed. The researcher instructed the patient about the different components, and thereafter the patient practiced sending a report under the researcher's supervision. The report was then shown in the graphs and discussed together. The self-care advice, including hyperlinks to Web sites, was introduced. Furthermore, a written manual for using the app was given for the patients to take home. The patients were instructed to report symptoms daily for 4 weeks starting the first day after discharge from the surgical or rehabilitation clinic. If the patients received chemotherapy during these weeks, they were instructed to continue to use the app in the same way. A reminder to report was sent through the app every day. The patients were thoroughly informed both orally and in writing that in case of an alert they would be contacted only during working hours (8 AM to 4 PM on weekdays) because the report could only be monitored by a nurse during this time. The allocated nurse was employed at the surgical clinic but was not primarily involved in the patients' care. The nurse was instructed to call the patients if she received an alert SMS and to document the actions taken in the Web interface. One of the researchers could be contacted in case of any technical problems.
Data were collected from 3 sources—logged data, individual interviews with the patients, and an interview with the nurse assigned to the study.
- Logged data concerning the number of reports, the number of reported symptoms, alerts, and documented interactions were extracted as an encrypted Excel file from the database hosted on the secure server. Data regarding the use of the self-care advice were not logged.
- The patients were interviewed about their experiences of using the app after their final report. The interviews followed a semistructured interview guide with the initial question: “What was it like to use the app?” Then followed questions regarding experiences of the content of included questions and self-care advice, viewing graphs of previous reports, being contacted after an alert (if applicable), technical issues, and how long it would be relevant to report symptoms. The interview ended with the question: “What has the app meant for you during this time?” Depending on the extent of the patients' answers, probing questions such as “Can you elaborate or give an example?” were used. The interviews lasted for a median time of 34 minutes (range, 22–54 minutes) and were audio recorded. All patients were interviewed in their homes.
- The nurse was interviewed over the phone about her experiences in receiving and managing the alerts and using the Web interface. Notes were taken during the interview.
The extracted logged data were analyzed using descriptive statistics. The patients' interviews were transcribed verbatim and were analyzed using qualitative content analysis as described by Elo and Kyngäs.32 The texts from all the patients' interviews were put together to create 1 unit of analysis. The text was read through to get a sense of the whole. After that, an open coding was performed by noting codes in the margins of the text. The codes were then transferred to a coding sheet, where similar codes were put together to create categories. Trustworthiness was insured in several ways.32,33 All the researchers had different experiences in cancer care and research, and thereby preunderstandings could be identified and discussed. Data from all participants were analyzed, and characteristics of patients are described as detailed as possible without threatening integrity. Two authors coded the text, and categories were created after discussions among all of the authors and returning to the text when divergences arose. Examples of the abstraction process and individual quotes are provided to validate the findings. The notes from the interview with the nurse were coded and analyzed manifest without creating categories.
The patients ranged in age from 57 to 74 years (mean, 65 years), and there were 3 men and 3 women. Three patients had adenocarcinoma in the pancreatic duct, and 3 patients had adenocarcinoma in the periampullary region.
The patients (n = 6) had in total sent in 141 reports and reported in total 652 symptoms, which means that the patients reported a mean of 5 symptoms per day. Adherence to reporting daily was on average 84% (range, 68%–93%). All symptoms included in the app were reported varying numbers of times (Figure 2). Fatigue was the most common symptom, reported in 91% (n = 128) of all the reports and by all patients, whereas dizziness was the least occurring symptom, reported in 2% (n = 3) of all the reports and by 2 patients (Table 2 and Figure 2).
Of the 141 reports, 58 (41%) generated alerts. A report could generate more than 1 alert, and the total number of alerts was 134. The distribution between red and yellow alerts was 54% red and 46% yellow. The most common alert was related to pain in the abdomen and/or back (43%) (Figure 2). The number of alerts per patient ranged from 0 to 78 (Figure 3). Two patients generated alerts almost daily, mostly connected to the question about pain in the abdomen and/or back. Of the 58 reports generating alerts, 35 (60%) resulted in no interaction with the nurse. The noninteractions were due to the fact that patients had chosen not to send an SMS (n = 30) or because an SMS was sent by mistake (n = 2), due to a system error (n = 1), or because the SMS was missed by the nurse (n = 2). The choice not to send an SMS, except for 1 report, was made by the 2 patients who triggered most of the alerts and mostly in connection to alerts regarding pain. Interactions were documented by the nurse in the Web interface and consisted of advice and discussions about different symptoms or a redirection to another healthcare professional. In case an alert had been triggered during weekends, an interaction was initiated on Monday morning. An example of the change of frequency of a symptom after an interaction following an alert is shown in Figure 4. The patient reported eating difficulties occurring almost always or often for 7 days, which rendered an alert. The nurse forwarded the information for action to a dietitian, who called the patient and discussed different ways to improve their eating situation.
Interviews With Patients
The analysis of the interviews with the patients rendered 4 categories: reporting symptoms, technical aspects, feeling reassured, and support for symptom management. Categories and examples of citations from patients and of the abstraction process are shown in Table 3.
Overall, the symptom questions were perceived as relevant and easy to answer and that they comprised all of the symptoms they had experienced. However, 1 patient suggested a question about sleep. Also, some questions were perceived as too specific and some too overarching, and suggestions for improvement were proposed.
There was a question regarding pain that I had difficulties to understand what was intended. (…). I didn't think I had anything to choose (…) an additional question is needed there. (Patient 2)
The structure of the questions regarding frequency and distress was sometimes perceived in a contradictory way. Some patients expressed that the 4 alternatives made it easy to precisely state how you feel, but some expressed that there were too few nuances and that it was not possible to state how you really felt.
There were several alternatives to choose from, which were really good because I could exactly pinpoint how I felt when I sent in my report. (Patient 4)
The daily reminder was seen as helpful to make sure no report was forgotten because it was hard to be completely focused when feeling ill.
On the question about how long after surgery it would be relevant to report symptoms, the patients thought that as long as distressing symptoms were a problem or if chemotherapy had been commenced it would be relevant to continue.
Overall, the patients noted that the app was technically easy to use, and during the study period only a few temporary system errors arose. The text was perceived as easy to read on the phone, and it was easy to navigate through the app.
If you clicked on the wrong answer, you could easily go back and correct yourself. (Patient 4)
However, some misunderstandings arose, and these had a negative impact on the patients. One patient was unaware that he had answered no to the question to send an SMS and was therefore not called after an alert, and the risk of making such a mistake was expressed as a flaw with a system that was supposed to be reassuring. Another patient who several times had chosen not to send an SMS was called by the nurse anyway. When the nurse asked why the patient had not sent an SMS, the patient thought that the nurse meant that the reports had not been sent either, which made the patient question if the system was working. Two patients who were not accustomed to using smartphones experienced trouble in the beginning using the app. However, after repeated instructions and training, the troubles were resolved.
Everything has worked fine, except in the beginning. I don't know if I did something wrong, but I didn't manage to log in at first. My own phone is old, and I'm not used to these new ones. But then one of the researchers came and showed me how to do it, and after that it has worked fine. (Patient 5)
Using the app made the patients feel reassured and cared for, knowing that someone monitored how they were doing at home.
I've felt reassured knowing that they got continuous information about my health, that they keep track of how I feel every day. And that has felt reassuring, absolutely. (Patient 3)
Some patients noted that the app made it easier to get in contact with healthcare than it normally is and that the app was a tool for staying in contact with healthcare after discharge.
I have used the app as if I was having a conversation with a nurse. (Patient 6)
The patients expressed that it felt good and reassuring to be contacted after an alert and that they had received help with their symptoms.
I felt very reassured since the nurse contacted me, and then I asked questions and received good answers as well. On 1 occasion, the nurse contacted the surgeon at once, and that was very good. (Patient 4)
SUPPORT FOR SYMPTOM MANAGEMENT
The patients described how answering symptom questions daily were supportive because they became aware of their symptoms and what they could manage.
The app gave me a daily routine to think about what I can manage. If I'm in pain, I think about my response, and I think OK, maybe I walked too fast yesterday. (Patient 6)
Also, patients who had used the component where previous reports could be viewed as graphs described that viewing the development of the symptoms over time supported them into reevaluating the response in previous reports, which led to a different interpretation of the symptoms.
If I'm to say something, it's that it's been great. I've thought things through. I've kept track of myself and also on how it was before, since I could see the graphs afterward. It's been supportive in that way. Then I could think, was it really worse then, or was it just my mood talking? (Patient 1)
There was as discrepancy in opinions about the possibility to choose to send an SMS in case of an alert. The function was perceived as relevant because a symptom sometimes did not feel serious enough to require a consultation and because the symptom was under control or they wanted to find out the solution for their problem themselves.
Even though I had pain, I didn't think it was serious enough. I saw no reason to send an alert because I knew all along that this would take time. (Patient 3)
However, patients also expressed that it was hard for them to decide when it was reasonable to be contacted and that they would rather be contacted one time too often. The patients could then together with the nurse decide if it was possible to await further actions.
Not all patients had read the self-care advice included in the app, but those who had perceived them as supportive and had read them through several times. The patients noted that it was hard to absorb all of the information given during the hospital stay. However, by reading the advice included in the app, they got answers to many of the questions that came up once they returned home. The advice also provided knowledge about what to expect, which was mentally invigorating.
After reading the advice I could say, OK, this is how it's supposed to be. It was like being given a course that made it easier to answer the questions, and psychologically, mentally you want to be strong. (Patient 6)
Interview With the Nurse
The nurse was overall positive to Interaktor and expressed that the system was beneficial for the patients. However, the SMS function created insecurity about whether to call the patient in case of an alert because the nurse could still view the alert in the Web interface without receiving an SMS. Further, it was difficult to interpret the reports of those patients who were undergoing chemotherapy because a surgical nurse is not an expert on the adverse effects of oncological treatment. The suggestion given was that the nurse at the oncological unit should monitor the patients' reports during the oncological treatment.
Although patients with pancreatic cancer experience severe symptoms and have an impaired quality of life, they are often cared for as outpatients. The findings in this study show that an interactive mHealth app such as Interaktor can be a valuable support for patients in the first 4 weeks after discharge following pancreaticoduodenectomy.
Despite the fact that patients after pancreaticoduodenectomy are known to have a long recovery period with an impaired quality of life, patients' adherence to reporting symptoms daily was high, demonstrating a high acceptability of Interaktor. The patients with no previous experience of using smartphones used the app without difficulty after receiving additional instructions. To allow multiple training sessions before use is essential, as it has been shown that patients with less technical knowledge require up to a week to become comfortable with unfamiliar systems.34 It was evident that the questions included in the pancreas version of Interaktor were appropriate for this patient group. However, some questions need to be rephrased so as to be more specific, for example, by dividing questions that ask about 2 things, as in the questions about fever/chills and different locations of pain.
It is complex to set alerts that are appropriate for all patients, which was revealed previously in a prostate version of Interaktor, when the extracted logged data showed that some alerts were “too liberal” in that nurses were alerted even when patients did not seem so worried.28 The possibility of choosing whether to be contacted after an alert can enable patients to be active participants in their own health management. On the other hand, it has been reported that cancer survivors feel unable to judge the seriousness of their symptoms.35 In the present study, some patients experienced difficulties in deciding by themselves when to be contacted by the nurse regarding a reported alert-set symptom. The patients had chosen not to be contacted in connection to more than half of the alerts, which made the nurse feel hesitant as to whether to call the patient anyway. Hence, in future studies, it would be wise to ascertain that the patients always will be contacted after an alert. An adjustment of the alert levels would also be needed to better meet the patients' needs. During the study period, there were a few occasions, caused by both human and technical errors, when patients reported that they had involuntarily not been contacted after an alert. Within the frame of this study, none of the patients were harmed because standard care for all patients entails information and telephone numbers to a contact nurse to turn to if needed. However, these few occasions stress the importance of keeping the app as simple as possible, removing components that can create any uncertainty, and ensuring that the patients are familiar with alternative channels for contacting healthcare. In clinical practice, it is also important to create clear routines in order to ensure that alerts are not missed at the clinic, for instance, by letting several nurses be involved in monitoring alerts.
Interaktor provided the patients with support for symptom management and consequently made the patients feel reassured and aware of their symptoms. Furthermore, a decrease in symptom frequency could be seen when the patients received immediate advice from healthcare professionals regarding an alerting symptom. The design of Interaktor enables the patients to choose among several components. For instance, some patients used the self-care advice, and some followed the graphs of their symptoms. Not all patients in the present study used every component in the app, but each patient described at least one that had been supportive for them. Hence, nursing care with the support of an app such as Interaktor may facilitate the support of patients' individual care needs and enable patients to be active participants in their own health management. In nursing research, patient participation is described as being built on a good relationship between the nurse and the patient, one in which the patient feels recognized and one that is necessary for the exchange of information that can be transferred into knowledge and understanding on the part of the patient.36 However, earlier knowledge shows that it most probably takes time to establish a relationship that facilitates patient participation.36 The present study indicates that, by using Interaktor as an aid for building the patient and nurse relationship, patient participation and recognition can be achieved.
Previous randomized controlled trials evaluating Web-based systems, in which patients with different cancer diagnosis have regularly reported symptoms that are subsequently discussed in meetings with healthcare professionals, have shown some positive effects on symptom distress and quality of life.37,38 However, these systems did not provide patients with any standardized self-care advice or recommendations for symptom management. In the present study, patients stated that reading the self-care advice was very helpful in managing symptoms as also reported in another feasibility study of a similar app.39 Hence, by offering patients the opportunity to report in an app, which also provides self-care advice, the positive effects on symptom distress and quality of life may be even larger.
Using a design for complex interventions is a strength when developing innovations. The Medical Research Council framework proposes systematic development, careful testing, and exploratory evaluation.30 The content in Interaktor was first determined by reviewing the literature and by interviewing patients and healthcare professionals.16 In this feasibility study, the sample size is small but is considered to be representative of the population of patients who have undergone pancreaticoduodenectomy at the current clinical site.40 One strength is that the logged data from the app were consistent with findings from the interviews with the patients. Therefore, after modifications of the app's components and content, it is suggested that the Interaktor app is promising for implementation in a larger sample over a longer period after pancreaticoduodenectomy. The Interaktor app seems to promote patient participation through its real-time interactive components, which facilitate communication between patient and nurse. These findings are important considering today's healthcare system where patients with cancer often have short hospital stays or receive treatment as outpatients and therefore need to take an active role in their own health management.
In conclusion, the Interaktor app was feasible, acceptable, and easy to use for patients after discharge following pancreaticoduodenectomy. The app facilitated patient participation, as the patients felt reassured and cared for and appreciated receiving support for symptom management. The study contributes important knowledge about an interactive app that can support patients who are cared for at home, who have poor prognosis, and experience severe symptoms.
The authors thank the patients and the nurse who participated in this study. They also thank Birgitta Holmgren, research nurse, for help in identifying patients who could be asked to participate in the study. Furthermore, they like to thank John Blomberg, surgeon, for valuable review of the self-care advice included in Interaktor and for comments about the design of the Web interface.
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