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Cancer patients receiving chemotherapy have high symptom needs that can negatively impact quality of life and result in high rates of unplanned acute care visits. Remote monitoring tools may improve symptom management in this patient population.
This study aimed to design a prototype tool to facilitate remote management of chemotherapy-related toxicities.
User needs were assessed using a participatory, user-centered design methodology that included field observation, interviews, and focus groups, and then analyzed using affinity diagramming. Participants included oncology patients, caregivers, and health care providers (HCPs) including medical oncologists, oncology nurses, primary care physicians, and pharmacists in Ontario, Canada. Overarching themes informed development of a Web-based prototype, which was further refined over 2 rounds of usability testing with end users.
Overarching themes were derived from needs assessments, which included 14 patients, 1 caregiver, and 12 HCPs. Themes common to both patients and HCPs included gaps and barriers in current systems, need for decision aids, improved communication and options in care delivery, secure access to credible and timely information, and integration into existing systems. In addition, patients identified missed opportunities, care not meeting their needs, feeling overwhelmed and anxious, and wanting to be more empowered. HCPs identified accountability for patient management as an issue. These themes informed development of a Web-based prototype (
Web-based tools integrating just-in-time self-management advice and HCP support into routine care may address gaps in systems for managing chemotherapy-related toxicities. Attention to the integration of new electronic tools into self-care by patients and practice was a strong theme for both patients and HCP participants and is a key issue that needs to be addressed for wide-scale adoption.
Cancer patients receiving chemotherapy have high symptom burden, which is reflected in their frequent utilization of the emergency department (ED) and high rates of hospitalization during treatment [
Technological solutions have been found to be acceptable to a wide range of populations including older individuals and those with little experience using Web-based technologies [
To design a prototype Web-based tool to facilitate remote management of chemotherapy-related toxicities, we used an iterative, participatory design methodology informed by human factors principles. As the majority of side effects and subsequent ED visits and hospitalizations occur between clinic visits, we focused on the needs of patients receiving chemotherapy in the outpatient setting. We initiated this study at a time when the evidence base regarding the development and effectiveness of such tools was limited; hence, we felt a local solution was needed [
To design a prototype of an electronic tool to address gaps in chemotherapy-related symptom management, we used a user-centered participatory design methodology [
A convenience sampling approach was utilized whereby HCPs were invited to participate directly by a study team member. Patients and their caregivers were invited to participate by their treating medical oncologist or through an email sent out by the Cancer Care Ontario Patient and Family Advisory Council. Patient participants were required to have received chemotherapy for any cancer type with any intent within the previous 2 years. To ensure a wide sampling of views, each participant undertook only one study activity (ethnographic field study, focus group, or prototype testing). All participants completed a baseline questionnaire to assess their level of interaction with information technology. The patient questionnaire consisted of 11 demographic questions and 10 information technology questions; the HCP questionnaire consisted of 11 demographic questions and 11 information technology questions. For questions estimating hours of computer and internet usage per day, the lower range number was used for analysis.
To understand and gather insights into the context in which care is provided, we utilized the event-focused ethnographic field study methodology of Bloomberg et al [
To encourage open discussion of views on issues and to minimize the risk of power imbalance, separate HCP and patient and caregiver focus groups were held and moderated by 2 human factors specialists (ASY and LP). Each participant attended a 1- to 2-hour focus group. Focus groups utilized open-ended questions and probes to generate discussion about gaps in the current health system related to symptom management as well as the content and functionality of a toxicity management tool. Focus groups were audio recorded and contemporaneous notes were taken.
Findings from demographics and preferences questionnaires were summarized using descriptive statistics. Qualitative data gathered during the ethnographic field studies and focus groups were thematically analyzed using the affinity diagramming method of Holtzblatt and Beyer [
Preparation for the affinity diagramming method consisted of a coding exercise on all the gathered data. Moreover, each of the 2 human factors specialists (ASY and LP) reviewed all data from all sessions generating codes denoting relevant keywords, phrases, and quotes from participant data. Each source of data (field observation and interviews and focus groups) was analyzed separately, which afforded methodological triangulation [
These codes were used in the ideation sessions, which were attended by 2 human factors study members (ASY and LP) and 3 HCP study members (RP, MK, and MP). On the basis of the principles of a Team Interpretation session [
Consensus on the themes was reached by all 5 members, and theme saturation was achieved when no new themes emerged for any presented piece of coded data [
On the basis of the different functional and information requirements gathered during the needs assessment, distinct interactive prototype interfaces were designed for both the patient and HCP roles. Usability testing was facilitated by human factors specialists and comprised hour-long cognitive walk-throughs, where participants performed realistic tasks while
Target recruitment for usability testing was 4 to 5 participants in the patient and caregiver and clinician groups, respectively, to identify up to 80% of usability problems as recommended in the literature [
The data from the patient and caregiver and clinician groups were analyzed separately. The data from the video recordings from usability testing also underwent thematic analysis using affinity diagramming methodology [
Between December 2014 and November 2015, 49 patients, caregivers, and HCPs participated in the study. Overall, 8 patients and 8 HCPs participated in ethnographic field studies; 6 patients, 1 caregiver, and 4 HCPs participated in focus groups; and 11 patients and 11 HCPs participated in usability testing (
Flow diagram of study design. HCP: health care providers; pts: points.
Summary of participant demographics and clinical characteristics.
Characteristics | All (n=46) | Patients and caregivers (n=26) | Health care providers (n=20a) | |
Male | 13 (28) | 10 (38) | 3 (15) | |
Female | 31 (67) | 15 (58) | 16 (80) | |
Missing | 2 (4) | 1 (4) | 1 (5) | |
Median (range) | —b | 55 (29-75) | 50 (31-65) | |
Missing | — | 1 | 1 | |
Family physician | — | — | 2 (10) | |
Medical oncologist | — | — | 5 (25) | |
Oncology nurse | — | — | 12 (60) | |
Pharmacist | — | — | 1 (5) | |
Median (range) | — | — | 20 (1.5-41) | |
Missing | — | — | 1 | |
Gastrointestinal cancer | — | 5 (19) | — | |
Breast cancer | — | 8 (31) | — | |
Lung cancer | — | 2 (8) | — | |
Lymphoma | — | 6 (23) | — | |
Other | — | 2 (8) | — | |
Missing | — | 2 (8) | — | |
Chemotherapy | — | 25 (96) | — | |
Radiation | — | 13 (50) | — | |
Surgery | — | 13 (50) | — | |
Professional/ graduate degree | — | 8 (31) | — | |
College/university | — | 13 (50) | — | |
High school | — | 3 (12) | — | |
Primary/middle school | — | 2 (8) | — | |
CAN $30-59k | — | 3 (12) | — | |
CAN $60-89k | — | 5 (19) | — | |
>CAN $90k | — | 12 (46) | — | |
Prefer not to say | — | 6 (23) | — | |
English | 41 (89) | 24 (92) | 17 (85) | |
Other | 5 (11) | 2 (8) | 3 (5) | |
Community-based clinic | — | — | 2 (10) | |
Hospital | — | — | 7 (35) | |
Hospital clinic | — | — | 11 (55) |
aData missing for 3 health care providers.
bNot applicable.
Computer and internet use were very common among HCPs, patients, and caregivers (
Thematic analysis of data collected from the ethnographic field studies and focus groups revealed themes of the recognition of gaps in the current health system, the existence of barriers to accessing care, and the need for timely support in decision making, which were common to both patients and HCPs (
The design of an interactive prototype with separate patient and HCP interfaces,
Iterative rounds of usability testing were undertaken with 22 participants (11 patients and 11 HCPs) to further refine the prototype and evaluate end-user needs. During usability testing, patients noted that it is often left to them to self-organize their care including integration of complex scheduling information and medication administration (
Issues noted by HCPs included concerns of how a Web-based tool would be integrated into existing workflows and procedures, especially existing electronic medical records, to avoid entering the same information into multiple HIT systems. The context within which patient-reported toxicities occurred was felt to be very important, so the ability to add notes within the app was desired. Issues of confidentiality and privacy were highlighted as critical and requiring clarification, particularly with regard to patient consent around communication between HCPs and caregivers. The ability to prioritize patient symptoms and other issues in order of urgency was also felt to be important to ensure that the most serious issues were addressed first. The use of a treatment guide for symptom management was seen as a useful tool to ensure HCPs give consistent advice to patients.
Baseline computer and information technology use.
Category and Response | All (n=46) | Patients and caregivers (n=26) | Health care providers (n=20a) | |
Yes | 37 (80) | 17 (65) | 20 (100) | |
No | 7 (15) | 7 (27) | 0 (0) | |
Missing | 2 (4) | 2 (8) | 0 (0) | |
Yes | 43 (93) | 24 (92) | 19 (95) | |
No | 3 (7) | 2 (8) | 1 (5) | |
Yes | 45 (98) | 25 (96) | 20 (100) | |
No | 0 (0) | 0 (0) | 0 (0) | |
Missing | 1 (2) | 1 (4) | 0 (0) | |
Hours on computer, smartphone, and tablet, per day, median (range) | —b | 3.5 (<1-9) | 6.5 (1-12) | |
Not at all | 1 (2) | 1 (4) | 0 (0) | |
A little | 2 (4) | 1 (4) | 1 (5) | |
Comfortable | 15 (33) | 6 (23) | 9 (45) | |
Very comfortable | 27 (59) | 17 (65) | 10 (50) | |
Missing | 1 (2) | 1 (4) | 0 (0) | |
Do not use | 1 (2) | 1 (4) | 0 (0) | |
Not at all | 3 (7) | 2 (8) | 1 (5) | |
A little | 4 (9) | 1 (4) | 3 (15) | |
Comfortable | 15 (33) | 6 (23) | 9 (45) | |
Very comfortable | 23 (50) | 16 (62) | 7 (35) | |
Hours on internet per day, median (range) | — | 2 (<1-12) | 3 (1-12) | |
Do not use | 1 (2) | 1 (4) | 0 (0) | |
Not at all | 0 (0) | 0 (0) | 0 (0) | |
A little | 3 (7) | 3 (12) | 0 (0) | |
Comfortable | 15 (33) | 5 (19) | 10 (50) | |
Very comfortable | 27 (59) | 17 (65) | 10 (50) | |
Do not use | 0 (0) | 0 (0) | 0 (0) | |
Not at all | 2 (4) | 2 (8) | 0 (0) | |
A little | 1 (2) | 1 (4) | 0 (0) | |
Comfortable | 14 (30) | 5 (19) | 9 (45) | |
Very comfortable | 29 (63) | 18 (69) | 11 (55) | |
Do not use | 3 (7) | 3 (12) | 0 (0) | |
Not at all | 1 (2) | 1 (4) | 0 (0) | |
A little | 4 (9) | 1 (4) | 3 (15) | |
Comfortable | 12 (26) | 4 (15) | 8 (40) | |
Very comfortable | 26 (57) | 17 (65) | 9 (45) | |
Do not use | 11 (24) | 9 (35) | 2 (10) | |
Not at all | 5 (11) | 4 (15) | 1 (5) | |
A little | 7 (15) | 0 (0) | 7 (35) | |
Comfortable | 12 (26) | 7 (27) | 5 (25) | |
Very comfortable | 11 (24) | 6 (23) | 5 (25) | |
Computer | — | — | 20 (100) | |
Smartphone | — | — | 11 (55) | |
Tablet | — | — | 3 (15) |
aData missing for 3 health care providers.
bNot applicable.
Summary of findings from thematic analysis of user needs data. HCP: health care providers.
Select screenshots of bridges from the patient/caregiver (panel A) and health care provider (panel B) user interfaces.
Patients
Responsible for self-organizing care
Want appointment calendar synced with hospital
Want information specific to their cancer and treatment
Practicalities of using online application—if unwell, want caregivers to fill out
Heath care is dynamic—care teams often large and ever-changing
Health care providers
Integration into existing work flows and practices
Provision of context to patient feedback as notes
Privacy and consent issues—sharing patient information, especially with caregivers
Prioritizing incoming information—deal with most serious problems first
Consistent assessments and provision of standardized management information (ie, treatment guidelines)
In our study, patients, caregivers, and HCPs engaged in designing an interactive Web-based prototype of a chemotherapy-related toxicity management tool. Issues within the existing systems identified by participants included the need for HCP-supported decision making and self-management strategies for patients, access to credible and timely information, improved communication (both between patients and HCPs, and among HCPs), and integration of the tool within existing workflows to prevent redundancy and confidentiality issues. Understanding local context including the required features and functionalities and potential implementation issues particular to the local context is essential for long-term success. Our study identified a number of additional functionalities and implementation challenges that add to this growing body of literature such as concerns from providers regarding accountability within the tool.
Functionalities of existing tools for patients undergoing cancer treatment that have been developed and pilot tested range from symptom tracking alone [
The evidence for positive impact of etools for symptom monitoring during cancer treatment is growing. A recent study by Denis et al [
Our findings need to be evaluated in the context of study limitations. Our participants were from 2 large urban centers in southern Ontario and, thus, may not represent end-user needs from other jurisdictions. Selection bias may be present as HCPs who volunteered to participate may have been inherently more interested in using HIT solutions. Likewise, patients who contacted the study coordinator directly may represent a more motivated population than a random sample and may not be representative of the views of the overall population. HCP and patient participants were mostly female (HCPs: 16 vs 3; patients/caregivers: 15 vs 10), so findings may not adequately represent the views of their male counterparts. Our patient and caregiver participants had a median age of 55 and reported having at least a college education (81% [21/26]), English as their first language (92% [24/26]), and comfort using the internet and technology. As such, additional work is needed to better understand the needs of end users who are older, non-English speaking, less educated, or less familiar with technology. The design of our interactive prototype is a first step in building an effective electronic tool for patient care. Additional studies are needed to explore whether the tool impacts patient outcomes; although, the recently published trials from the United States [
The method of affinity diagramming aims to bring together issues and insights from various stakeholders, from which overarching themes emerge. Although the data were collected using a number of approaches to understand the complexities and subtleties of toxicity management within the Canadian context, it could be argued that the resulting artifact from affinity diagraming affords only a thin description of toxicity management, that is, a limitation of the method is that the resulting affinity diagram is only a brief summary of the themes that emerged, lacking rich context. However, it should be noted that the human factors study members who conducted the ethnographic field study and participated in ideation sessions were also those who designed the prototype. Thus, although the themes from affinity diagramming informed the design of the prototypes, the human factors study members were also able to draw from the contextual data that they experienced firsthand. Although the number of participants required for usability testing has been well-established [
We have shown that using a human factors design approach for a Web-based application to support management of chemotherapy-related toxicities has the potential to address gaps in cancer care. As these gaps were identified within the local context of care, the design, iterated upon through prototyping and usability testing, seeks to address these needs directly. Our study highlighted that operationalizing a Web-based tool has significant system implications, including assigning responsibility for monitoring the tool to appropriate HCPs and the need to embed the tool into existing workflows and systems. Integration of new etools into self-care by patients and practice is a key issue that needs to be addressed for wide-scale adoption.
emergency department
health care provider
health information technology
Funding for this study was provided by an Innovation Planning Fund grant from the Department of Medicine, University of Toronto, funds from the Princess Margaret Cancer Centre Foundation, and a Health Services Research Grant from the Ontario Institute for Cancer Research. Early versions of this work were presented at the American Society of Clinical Oncology Quality Symposium in February 2016, Phoenix, AZ; the Cancer Care Ontario Research Day in April 2016, Toronto, ON; and at the Applied Research in Cancer Control Conference in May 2016, Toronto, ON.
None declared.