Objective: To assess patients’ use of the Internet and PPs in an outpatient cancer clinic.
Methods: An anonymous, descriptive survey study design. Participants were recruited from an outpatient cancer clinic and completed surveys about their sociodemographics (eg, age, sex), cancer type/stage/treatment, computer/Internet/PP experience, patient-clinician communication, and PP self-efficacy. Descriptive statistics were computed to characterize the study sample and patient Internet/PP use.
Results: Participants (N = 85) were 50.6% male, 64.3% white, and well-educated (80% with at least some college). The mean age was 57.1 years. Types and stages of cancer varied greatly; the most common included leukemia/lymphoma (32.1%) and multiple myeloma (23.5%). All patients used the Internet, and most used a smartphone (eg, iPhone, Galaxy; 90.6%). Thirty-six (42.4%) had used the PP prior to completing the survey. Given that all participants in our study used the Internet and 42.4% had used the PP, there is great potential for using PPs to deliver information tailored to the need of cancer survivors.
Conclusion: We found that patients with cancer in an ambulatory clinic had high interest in using PPs and a higher adoption rate of PP use compared with what has been reported in the literature. Our research offers confirmation that PPs and the Internet are viable tools to help cancer survivors during any stage of survivorship.
In recent years, the United States has made unprecedented efforts to transform healthcare using information technology (IT).1,2 For example, patients can access their personal health information in real time from anywhere that has an Internet connection through the use of patient portals (PPs), which are secure websites where patients can view their electronic health records (EHRs) (eg, medications, laboratory results, visit notes). Through secure PPs, patients can access their EHRs, directly send eMessages to their providers, and request medication renewals online. Also, patients often want or need to have a family member or support person access the PP on their behalf,3 thereby involving their family and/or support persons in their care more efficiently.4 Thus, PPs provide a unique opportunity to facilitate supportive care for patients with cancer and their caregivers through diagnosis, treatment, and survivorship.
In 2016, 15.5 million Americans were living with cancer; by 2026, this number is expected to reach 20.3 million.5 Therefore, the expansion of e-health platforms and the focus of PPs and their access are of particular interest for cancer survivors, who are defined as individuals with cancer from time of diagnosis through the balance of their life.6,7 Cancer survivors include patients who are receiving active treatment, are posttreatment, or are living with chronic cancer (eg, metastatic, recurrent solid tumors, or leukemia/lymphoma).
The goals of survivorship care are prevention or early detection of new (primary) and recurrent cancers and delivery of interventions for illnesses secondary to cancer and/or its treatment.8,9 Coordinating care among different providers and resources is vital to achieving these goals; however, despite the importance of survivorship care, many survivors are lost to follow-up.10,11 PPs can help bridge the gap in survivorship care by providing a means to facilitate patient-provider communication and delivery of supportive care (eg, dietary needs, exercise programs), but PPs are often underused by both healthcare providers and patients, and it is unclear why.
Adoption rates of PPs vary depending on care organizations.12,13 Under the current EHR Incentive Payment Program, PPs are freely available to patients from their healthcare providers.4,14 Published research findings have demonstrated the positive impact of PPs on management of chronic conditions, adherence to treatment, and patient-provider communication.15-18 Studies also suggest that PPs improve patients’ health decision-making processes.15,19 However, there has been a lack of research in PP use among patients with cancer compared with patients with other chronic conditions (eg, diabetes).13,15-17,20 As a first step toward developing a survivorship care intervention that may be delivered using PPs, thereby maximizing the utilization and capacity of PPs, we conducted a pilot study to examine whether patients with cancer engage with a PP in the ambulatory care setting and to assess their use of the Internet. Our primary aims were (1) to describe sociodemographic and clinical characteristics of the patient sample, and (2) to assess engagement of patients with cancer with a PP.
We used a descriptive, anonymous survey study design to examine Internet and PP use by patients with cancer. The University of Maryland, Baltimore Institutional Review Board (IRB) approved the study. Data were collected over a period of 10 days in spring 2017.
Sample and Setting
This study was conducted in an ambulatory care clinic of an urban, National Cancer Institute (NCI)-designated comprehensive cancer center. Men and women older than 18 years who were patients at the clinic and who could use Internet and e-mail independently were invited to participate in the study. Participants were excluded if they were unable to read and/or write English. Because this was a preliminary study to help inform our future research, we did not conduct a sample size calculation a priori.
After IRB approval, members of the research team recruited participants from the waiting areas of the clinic. Flyers were placed at the registration desk and throughout the clinic. Trained members of the research team were available in patient waiting areas to explain the study and to answer any questions, assist participants with taking the survey, collect the surveys, and distribute participant incentives. The research team comprised 2 PhD-prepared nurse scientists, a research coordinator, a graduate research assistant, an oncology nurse navigator, and the nurse manager of the ambulatory oncology clinic.
Each interested participant received a study information form that explained the anonymous volunteer study (eg, study purpose, eligibility criteria, procedures, potential risks/benefits, and participants’ rights). No personal health information was collected in this study. If individuals agreed to participate and met eligibility criteria, they took the survey to a private area of the outpatient clinic to complete. If requested by the participant (eg, the participant felt more comfortable having a research member available for questions), a trained research team member assisted with survey completion by reading each question on the survey to the participant and writing down the participant’s response. Participants returned completed surveys to a research team member. All participants were given a $5 hospital coupon to be used at vendors (eg, cafeteria, gift shop) in the medical center.
We administered the surveys in paper format. Patients were asked questions about their sociodemographics, such as age, race/ethnicity, sex, level of education, and native language, using a study-specific case report form. Information about their cancer, current stage of cancer, and current stage of their treatment of cancer (ie, postdiagnosis but before treatment, active treatment, completed active treatment) were also documented on a study-specific case report form. Participants rated their experience using computers on a 5-point Likert scale (0 = beginner to 5 = proficient). Experience using the Internet was measured in total number of years and amount of time used per week.
We measured patient-clinician communication using 13 questions that were used in a previous study.21 Participants rated items on a 5-point Likert scale (0 = strongly disagree to 5 = strongly agree), except one item asking about the length of years with the current provider. Examples of items included, “I can easily talk about personal things with my healthcare provider,” “My healthcare provider knows a lot about the rest of my family,” and “My healthcare provider knows the results of my visits to other doctors.” Items were summed and reported as the mean summary score.
To assess personal health record (PHR)/PP knowledge, patients completed an 8-item questionnaire that was developed and tested in a prior study.22,23 Examples of items included, “A Personal Health Record is different from an electronic health record (EHR) in that (select the best answer),” “The main user of a Personal Health Record is (select the best answer),” and “Some patient portals allow you to do all of the following except (select the best answer).” Items were summed, with the total score reflecting the level of the participant’s PP knowledge (range, 0-40).
PHR/PP self-efficacy was assessed using a modified 4-item version of the Self-efficacy for Computer-Based Personal Health Record scale from the Personal Health Record (PHR) Self-Efficacy scale.24 The original scale assesses 3 areas of PHR competency: general PHR self-efficacy, self-efficacy for paper-based PHR, and self-efficacy for computer-based PHR.
After completion of data collection, a trained graduate research assistant entered participant responses into a Qualtrics software database according to established data handling and entry guidelines. After data entry, the principal investigator of the study performed a quality control check of 10% of the data to ensure accurate data entry. Descriptive statistics were computed to describe the data distributions and to characterize the study sample, to describe patient Internet and PP use, and to describe PP self-efficacy and patient-provider communication. We used IBM SPSS Statistics v. 24.0 to perform all statistical analyses.
The participant sample (N = 85) was 50.6% male, 64.3% white, 7.7% Hispanic/Latino, and well-educated (80% with some college, college degree, or graduate degree) (Table 1). The mean age was 57.1 years (SD 13.4; range, 23-85 years). English was the native language for 90.2% of the participants. The types and stages of cancer varied greatly among the participants (Table 2; Figure), but the most common types or sites of cancer included breast (4.9%), leukemia or lymphoma (32.1%), multiple myeloma (23.5%), and lung (4.9%).
All patients used the Internet, and the majority of participants used a smartphone (eg, iPhone, Galaxy; 90.6%) (Table 3). Thirty-six (42.4%) participants had used the PP prior to completing the survey. The mean PP knowledge score was 5.0 (SD 1.7; range, 0-8), and the mean score for self-efficacy for using PPs was 29.2 (SD 13.0; range, 0-40). The mean patient-provider communication score was 48.7 (SD 8.6; range, 12-60).
PPs provide patients with immediate access to their personal health information, facilitate connectivity with their healthcare team, and engage patients in their care in real time.25,26 PPs provide multidisciplinary oncology care teams with a unique opportunity to deliver additional supportive care for patients with cancer; however, we found little research examining use of PPs or PHRs in patients with cancer. As a first step, we conducted a pilot study to examine patients’ use of the Internet and the PP using anonymous surveys in an ambulatory clinic of an NCI-designated comprehensive cancer center.
We learned that nearly half of the patients in the clinic we sampled were already using the PP. The adoption rate (42.4%) was much higher than that found in another outpatient clinic in the same university hospital system and other ambulatory clinics in the United States implementing PPs or interactive PHRs (as low as 16.8%).26 Clarification is needed about whether the patients accessed PPs because they felt they “had to” rather than their perception of the PP as a useful mechanism to communicate with providers and access information. Understanding the patients’ motivation for using PPs would dramatically influence the capacity to use the PP for supportive care interventions; for example, understanding whether an individual believes the PP is a reliable source of information (vs the Internet, family member, or peer with cancer) regarding their cancer or cancer treatment may help to facilitate use of the portal in delivery of supportive care. Other research has reported the use of electronic messaging through PPs, but not overall adoption rates.27 Use of PPs as a means to communicate with interdisciplinary oncology teams and engage patients in their cancer care remains an underexplored area for research.
Cancer survivors can greatly benefit from using PPs while they manage multiple treatment plans. For example, Carr and colleagues28 designed structured, electronic forms for the EHR that detailed tumor staging, classification, and treatment for patients with lung cancer, which the patients found to be helpful. Duman-Lubberding and colleagues29 examined an online self-management application for head and neck cancer survivors through which patients were able to report about their quality of life, including topics such as anxiety and depression, fear of recurrence, pain, sleep quality, social life, financial issues, physical activity, and oral function. The researchers reported a 64% adoption rate by the survivors, who overall were satisfied with the system and found it to be user-friendly. Satisfaction with the online system was not associated with age, sex, tumor location, stage of disease, type of treatment, patient comorbidity, or health-related quality of life. Limitations acknowledged by the research team included patients feeling that there was too much information that was not always applicable to their personal situation. In addition, the system was tested in patients who had completed their treatment 2 years prior, which the patients found to be too long a period to wait to implement such a system (ie, they had already found solutions to their issues). Additional limitations to the published research included that examination focused on 1 type of cancer and the lack of a control or comparison group.
The results from our study should be interpreted with the several limitations in mind. The anonymous nature of the survey encouraged participation, but we were not able to link individual surveys with patient information from their medical records. Our study was restricted to 1 comprehensive cancer center clinic in an urban area; therefore, generalizability to other areas of the country may be difficult. In addition, most women who were being followed for breast cancer were seen at a separate clinic in the center. Further, it should be noted that most participants in this study were on active treatment and therefore interested in the care they were receiving. To obtain an accurate assessment of the desires and willingness to use PPs of survivors, it would be helpful to conduct research with survivors after treatment is completed.
Despite these limitations, our findings demonstrate that patients with cancer in the clinic we sampled have a high interest in using PPs (ie, enrolled 85 participants in 10 days). Future directions for research inquiry should include examinations of PP work volume and flow, patient expectations, and safety, particularly with reporting symptoms related to disease and/or treatment of cancer. In addition, research should be conducted in the use of PPs for delivery and documentation of survivorship care plans. PPs also provide delivery mechanism through which oncology healthcare teams, in particular the nurse navigator, can implement interventions aimed at cancer survivorship care issues, such as adherence to chronic oral cancer treatment, self-management of symptoms, delivery of survivorship care plans, and/or communication between the oncology care team and other healthcare providers caring for the patient. As such, randomized controlled trials that develop, test, and evaluate these interventions compared with usual standard of care are critical for advancing the state of the science in oncology e-health.
We found that patients with cancer in an ambulatory clinic had high interest in using PPs and a higher adoption rate of PP use compared with what has been reported in the literature. Our research offers confirmation that PPs and the Internet are viable tools for bridging the gap between cancer survivors during any stage of survivorship and healthcare providers. Interventions that expand e-health platforms and maximize PP use may enhance communication and care of cancer survivors in an era where doing “more with less” is a common challenge for healthcare providers.
This research was funded by a research facilitation grant through the University of Maryland, Baltimore, School of Nursing, Biology and Behavior Across the Life Span Research Center of Excellence. Dr Wickersham was a faculty member at the University of Maryland at the time this study was conducted.
We would like to acknowledge Mr Brooks DuBose for his work on this project. We gratefully thank the University of Maryland Greenebaum Comprehensive Cancer Center, the Stoler Pavilion Outpatient Clinic, and the participants for their support of this project.
Disclosures: The authors have no financial disclosures or conflicts of interest to report.
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