This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mhealth and uhealth, is properly cited. The complete bibliographic information, a link to the original publication on http://mhealth.jmir.org/, as well as this copyright and license information must be included.
Given the complex and evolving needs of individuals with multimorbidity, the adoption of mHealth tools to support self-management efforts is increasingly being explored, particularly in primary care settings. The electronic patient-reported outcomes (ePRO) tool was codeveloped with patients and providers in an interdisciplinary primary care team in Toronto, Canada, to help facilitate self-management in community-dwelling adults with multiple chronic conditions.
The objective of study is to explore the experience and expectations of patients with multimorbidity and their providers around the use of the ePRO tool in supporting self-management efforts.
We conducted a 4-week pilot study of the ePRO tool. Patients’ and providers’ experiences and expectations were explored through focus groups that were conducted at the end of the study. In addition, thematic analyses were used to assess the shared and contrasting perspectives of patients and providers on the role of the ePRO tool in facilitating self-management. Coded data were then mapped onto the Individual and Family Self-Management Theory using the framework method.
In this pilot study, 12 patients and 6 providers participated. Both patients and providers emphasized the need for a more explicit recognition of self-management context, including greater customizability of content to better adapt to the complexity and fluidity of self-management in this particular patient population. Patients and providers highlighted gaps in the extent to which the tool enables self-management processes, including how limited progress toward self-management goals and the absence of direct provider engagement through the ePRO tool inhibited patients from meeting their self-management goals. Providers highlighted proximal outcomes based on their experience of the tool and specifically, they indicated that the tool offered valuable insights into the broader patient context, which helps to inform the self-management approach and activities they recommend to patients, whereas patients recognized the tool’s potential in helping to improve access to different providers in a team-based primary care setting.
This study identifies a more explicit recognition of the contextual factors that influence patients’ ability to self-manage and greater adaptability to accommodate patient complexity and provider workflow as next steps in refining the ePRO tool to better support self-management efforts in primary care ahead of its application in a full-scale randomized pragmatic trial.
Individuals with multimorbidity often require personalized, multifaceted self-management support to facilitate the acquisition of varying and evolving patient-centered goals [
Primary care providers play a central role in collaborating with patients to help them successfully manage their multimorbidity [
The use of mHealth is demonstrated to be an effective means to support self-management efforts to help mitigate the challenges that patients and primary care providers experience [
As such, our understanding of the effectiveness of mHealth apps in supporting self-management and their impact on outcomes in adults with multiple chronic conditions remains in its early stages [
The electronic patient-reported outcomes (ePRO) tool is among a small number of mHealth tools developed using a user-centered design approach [
This study was based on a secondary analysis of data from a usability pilot of the ePRO tool and sought to assess the user (patient and provider) experience of the tool in supporting self-management for patients with multimorbidity in an interdisciplinary primary care team.
At the time of the study, the primary care team was composed 5 family physicians, 1 nurse practitioner, 1 social worker, 2 registered nurses, 2 medical assistants, 2 diabetes educators, and 6 administrative staff members. Patients had a lead provider (physician or nurse practitioner) that managed care, although patients could also receive care from other providers (social worker and dieticians) on the primary care team [
Provider recruitment was initiated through the managing director of the primary care team who was asked to identify providers that would be interested in participating, given the tool’s intended functionality and focus on patients with multimorbidity. A summary of the research study and consent form was sent to those providers identified by the managing director. Following the completion of consent forms, providers from the primary care team shared the names and contact information of potential participants with the research team.
Patient participants had to meet the following eligibility criteria [
The ePRO tool was developed by a group of primary care providers and patients in an interprofessional primary care team based in Toronto, Canada; a detailed description of the development process has been published elsewhere [
The technology partner (QoC Health) offered providers two 1-hour hands-on training sessions (facilitated by the research team) on the mobile phone app and portal to provide a walk-through of the ePRO tool before starting the study, whereas, patients received one-on-one training through a 30-minute hands-on session with a member of the research team at the time when patients gave consent to participate in this study.
Each participating patient received a Samsung Core mobile phone (including 3G data coverage) that had the ePRO mobile app preloaded. In addition, patients had the option to enter monitoring data through the portal instead of the mobile device. Providers could access the desktop version of the app through the portal system, which allowed them to collaboratively establish goals with patients, track patients’ progress over time, and access the hospital checkout alerts. The portal system was generally expected to be used primarily by providers when establishing goals and to review patient progress.
At the outset of the study, patients and providers met to collaboratively determine what goals (and associated monitoring protocols) they wanted to establish and track over the course of the study. During the initial 30-minute consult, patients and providers discussed their existing and evolving needs as they relate to managing their multimorbidity, collaboratively established goals, and identified relevant monitoring protocols pertaining to their self-management goals. After this initial meeting, patients tracked their progress toward goals for 4 weeks using the mobile phone app or the portal, following which they met with their provider to view their results and discuss progress to date. Furthermore, patients could see their providers on a more frequent basis if needed (and discuss results or adjust goals, etc), but the initial set-up meeting and final results debriefing were mandatory for all participants.
Upon completion of the 4-week study period, patients and providers were invited to participate in separate focus groups involving semistructured questions to offer feedback on their experience. Patients were asked whether the tool addressed pertinent issues, what improvements could be made, and whether they felt the tool was easy to use. The patient focus group (PTFG) was conducted in December 2014 and moderated by a member of the research team (CSG). A total of 5 patients participated in the PTFG, which lasted 75 minutes. In addition, 3 patients were unable to attend the PTFG and were interviewed separately (interviews lasted 45-60 minutes). Conversely, the provider focus group (PRFG) was conducted by CSG in January 2015 (lasted 60 minutes) and included all 6 providers who participated in this study. Providers were asked about the ease of use, whether they could incorporate the tool into the workflow, and what improvements could be made.
Initially, members of the research team (AIK, AG, CSG, and PH) independently reviewed transcripts and then met iteratively to achieve consensus around a common coding scheme [
The
A total of 12 patient participants were identified and agreed to participate in this study. Over the course of the study, 3 patients dropped out owing to health concerns. Patient participants were on average aged 58 years (range 35-72 years) with an equal ratio of males to females. Patients presented with both medical and social complexity—a typical patient in the sample could be described as a female aged 58 years with multiple chronic conditions, including hypertension, chronic obstructive pulmonary disease, arthritis, and depression. Half of the patient group (n=6) reported feeling comfortable with hand-held devices and technology. Most patients tracked one or two goals, and physical health was the most commonly tracked goal. In addition, 6 providers participated in this study, including family physicians, a registered nurse, dietician, social worker, and diabetes educator.
Contextual factors that both user groups identified as important considerations in developing mHealth tools for self-management included the expansion of the tool’s scope to allow for comprehensive self-management and linkages with programs and services offered at the practice. In addition, providers described a gap between the tool’s design and provider workflow and an underlying disconnect between the goals established at the outset and the monitoring protocols available in the tool, indicating that many questions lacked specificity and were not adequately personalized to align with individual patient context.
Patient interviews indicated that they perceived the ePRO tool as a means to manage their conditions and health behaviors more holistically and as such, they felt the tool had limitations in terms of the comprehensiveness of its scope. Given the wide range of conditions and symptoms patients are attempting to monitor and regulate as part of their self-management efforts, features such as appointment and medication reminders, blood sugar reporting, pedometer functionality, and links to other mHealth apps (such as Sugars and FitBit) were identified as necessary in expanding the tool’s scope to reflect the broader individual context within which patients were hoping to self-manage their conditions and symptoms. In addition, patients stressed the need for greater personalization and customizability of goals and monitoring protocols. The questions in the ePRO tool appeared to lack the depth that was considered vital to incorporating patient context into self-management activities:
For the mood one, the questions I got asked...would have been okay for somebody that didn’t have much of a mood problem.
Not everybody needs the same questions. Everybody's case is different...but we got the exact same questions.
I think the bottom line that comes out of my disconcertedness about it was that the questions were too broad. They weren't specific enough.
Participant characteristics.
Characteristics | Value | |
35-54 | 5 (46) | |
55-65 | 4 (36) | |
>65 | 3 (27) | |
Female | 6 (50) | |
Male | 6 (50) | |
Previous experience | 6 (50) | |
Little experience | 2 (17) | |
Not reported | 4 (33) | |
Arthritis | 2 (17) | |
Cardiovascular | 3 (25) | |
Chronic pain | 5 (42) | |
Diabetes | 5 (42) | |
Mental health | 10 (83) | |
Obesity | 2 (17) | |
Renal failure | 2 (17) | |
Chronic obstructive pulmonary disease | 1 (8) | |
Other | 2 (17) | |
Physical health | 6 (50) | |
Mood and memory | 3 (25) | |
Pain | 2 (17) | |
Diet | 2 (17) | |
Mobility | 1 (8) | |
Physical health | 9-76 completions | |
Mood and memory | 8-70 completions | |
Pain | 8-53 completions | |
Diet | 3-9 completions | |
Mobility | 25-3 completions | |
Hospital alert | 2-1 completions |
aUnique completions refers to the frequency of times patients completed a full report of protocol questions.
Summary of themes observed across user groups.
IFSMa domains | Thematic mapping | Key themes | ||
Patient views | Provider views | |||
1. | Context: Individual, family, and environmental factors that might challenge or enhance patient ability to successfully self-manage and provider capacity to support self-management efforts | Contextual aspects pertaining to users (patients and providers) that inhibit (or facilitate) self-management efforts |
Expansion of tool scope to promote comprehensive self-management Need for improved alignment between the tool’s design and patient complexity |
Linkage with existing programs and practice approaches Tool responsiveness to challenges presented by self-management in patients with multimorbidity |
2. | Process: Procedural aspects of self-management, including self-regulation (goal setting, self-evaluation, and self-monitoring), self-efficacy (ie, the degree of confidence an individual has in their ability to adjust or alter behavior successfully), and social facilitation (eg, social support for self-management and the interplay between the perspectives of patients, families and providers on goals and techniques for self-management) | ePROb tool’s role in supporting or inhibiting key self-management processes |
Limited progress toward self-management goals further inhibits a patient’s sense of self-efficacy Need for more active feedback and support from providers for self-regulation activities |
Challenges in promoting self-efficacy for patients with multimorbidity Concerns with offering active social support through the tool |
3. | Outcomes: Proximal or short-term outcomes, such as changes in health behaviors, as well as distal outcomes, such as reduced health system utilization and costs | The impact of the ePRO tool on self-management efforts—patient and provider perspectives on the tool’s effectiveness |
Capacity building for expanded self-management support across providers in the primary care team |
Key insights into broader patient context and its underlying impact on patient ability to self-manage |
aIFSM: Individual and Family Self-Management Theory.
bePRO: electronic patient-reported outcomes.
Providers acknowledged the challenges that multimorbidity presents for patients engaged in self-management and suggested expanding the tool’s capabilities to account for how complexity attributed to multimorbidity dominates decisions around which self-management strategies providers adopt in caring for these patients. Providers emphasized the need for greater connectivity with existing mHealth apps and services offered by the primary care practice:
Align it with...programs that we're doing already. Like Her Story or She Rose, Craving Change...the Stop Study...Every single one of the patients that [are] coming... to see me is very complicated–medically, socially and psychologically...Smoking cessation, changing your behavior around eating, tracking food and how you're feeling...would align [with patient needs]...and those are already people, that are engaged in the sense that they are coming to those groups.
Providers noted that individual complexity profiles along with variability in patient readiness for behavioral change requires a flexible approach toward self-management. As such, the adoption of the ePRO tool might not be appropriate for all patients. In fact, one provider offered the example of a patient who they felt was not ready for an active self-management intervention.
If I had been able to think about it more in advance or understood this better in the beginning, I would not have chosen that participant because he needed a lot more motivational interviewing to get to the point where we could do that kind of goal setting. He wasn't an ideal candidate for this kind of test. But it was very difficult for him...he found having to look at that information depressing...all of which points to the fact that he was not ready to set those goals.
Several providers revealed that the ePRO tool did not match existing approaches to goal setting used in the primary care practice. Providers were accustomed to using the “specific, measurable, attainable, realistic, and timely” (SMART) goals approach [
[The tool] has to be tailored to work flow, I would like that the visit could be somehow linked into our electronic medical record. Because I was documenting...I was like dealing with the [ePRO] template and setting the goal. But then that doesn't document it in the patient's chart.
Although providers indicated that the tool could be a useful component in supporting self-management in this patient population, self-management for patients with multimorbidity is an inherently long-term and multilayered process due to the compounding of medical and social complexity that commonly occurs in this patient group. As one provider stated:
...What I usually do with people is just layers and layers and layers and layers of therapy...And you can't even get to the therapy because... they're at risk for homelessness. Then they're not getting their Ontario Works cheque. And so you're just kind of going along and along. It takes me a long time to meet with somebody once you get through all of that stuff and then go, “Let's set some goals.”
Patient views pertaining to how the ePRO tool supports self-management processes revolved around the patient’s desire for more active engagement and support from providers directly through the tool and how limited progress toward self-management goals detracted from the patient’s sense of self-efficacy and self-regulation activities. However, providers indicated concerns with offering active social support directly through the tool and discussed the challenges that multimorbidity presents in promoting self-efficacy.
Several patients described how monitoring their limited progress toward goals through the tool actually led them to feel discouraged and demotivated, thereby hindering confidence in their ability to self-regulate and meet intended self-management goals. As several participants noted:
...It's going to take weeks before I might move up to the next level. All you're doing in that case for me is reminding me that my fitness...is crappy... If I had to answer that question every day that my fitness was bad, it's not motivating. It's sort of sinking into my head that my fitness is crappy...It's continuing to be crappy. So depending on the person that might get you depressed.
You know, you go up and down. I mean even in a day, I could go down, you know. And I was told, you know, just put it in at nighttime...But you know, if I put it in at nighttime, probably from night to night, it would change if I just rate it at that minute. But throughout the whole day...there was nothing to say, you know, I'm on a total rollercoaster ride.
Patients identified gaps in the tool’s ability to promote self-efficacy in terms of the adherence to self-regulation activities because of limited feedback on their progress from providers. Patient-reported data were not reviewed by providers in real time nor were providers able to comment on patient progress directly through the tool; this gap in functionality led to patients feeling isolated and discouraged.
The problem is I don't know what the picture [refers to uploading photos of meals consumed to better track their diet to manage their diabetes] is doing. Like there's no one analyzing the picture—is there?
Patients suggested the use of alerts in the form of reminders (that could be sent by the provider or programmed into the ePRO tool) for logging data to support self-regulation. Patients also suggested that providers use the tool to offer direct encouragement and acknowledgment of patients’ progress and monitor patient-reported data in real time (and intervene in a timely manner if needed). As one patient expressed:
Your provider should be able to trigger an event because you weren't answering a question...But there's no ability to...I got no feedback from my provider until today. And it was useful feedback...So how do you keep up on your goal? Because the onus was on you
Patient expectations around social facilitation and social support indicated that they were expecting a more active role in self-management efforts from providers. Patients felt the tool should supplement patient-provider interaction through regular feedback and encouragement as an “add-on” to existing in-person appointments rather than a replacement for in-person interaction and consults with their providers.
Provider interviews indicated that careful attention and adjustment is vital in ensuring that self-regulation activities and subsequent monitoring protocols are appropriately selected. Limited progress toward self-management goals inhibits self-efficacy and leaves patients feeling unmotivated and unlikely to continue with self-regulation and monitoring activities. As one provider explained:
A lot of times when people set goals, it doesn't work, especially the first time or couple of times...A lot of people set goals that are way too big, way too out there, or not realistic until they actually apply it...So then that sets them up for dropping out maybe. Because they're like, oh, I can't do this goal, I failed, I suck.
Providers also indicated that self-management is a fluid process and as such, the tool must be more responsive to the changing self-management needs of this patient subgroup. As one provider said:
For concrete goals, this can be a useful tool. Patients who can set those kind of concrete goals can implement them. They probably don't need the tool...Most of the goals I set are not like that...they'refluid and they change. And I didn't find this tool to be responsive enough to offer that.
In contrast to patient views, provider expectations pertaining to how the tool would be operationalized in the daily practice were centered on the tool’s potential in remotely monitoring patient progress. Providers envisioned the tool being used to flag problems or lapses in patient adherence to self-regulation activities (rather than a mechanism for active social facilitation of self-management efforts), such that providers only intervene as needed, thereby reducing the need for in-person appointments. As one provider noted:
One of the things that I do is tell people who are initiating insulin to increase their dose. And I have to be in regular contact with them a lot. Like way too much. If this tool could tell me the information, they could just punch it in—what their blood sugar was that day, how much insulin they took. And the only time we would have to be in touch would be if there was a problem until there was regular follow-up scheduled. That would be perfect.
Providers had concerns about active engagement and communication with patients through the tool; in particular, they highlighted challenges with information overload related to reviewing patient-reported data in real time and associated liabilities from a medical and legal perspective. Overall, they envisioned the tool as more of a means to allow for remote monitoring (when patients readiness to self-manage was evident).
Patient and provider views on the ePRO tool’s impact on enabling self-management efforts indicated that both user groups felt that the tool had made important contributions in terms of proximal or short-term outcomes pertaining to successful self-management. Patients described the tool’s potential in enabling wider support for self-management from multiple providers in the primary care team. Conversely, providers stated that the tool offered important insights into the contextual aspects that inhibit a patient’s ability to engage in self-management activities. Specifically, access to patient-reported data, that is, mood, health behaviors, etc, had helped them to explore trends in self-regulation and goal attainment over time and more easily identify the underlying motivations and barriers that patients may face in self-management.
Patients acknowledged the potential of the ePRO tool in building capacity to support self-management in a team-based care environment by helping to better distribute the workload across providers to meet the evolving needs of patients. As one patient expressed:
It could be really valuable in terms of...balancing the time of those professionals in a way that could help the patient...with that goal but also manage the time of the professionals on the team in the most appropriate way...Instead of someone saying I need to see my doctor every week...as you're seeing those results, you could see, well, basically the issue here is with what I'm eating. I need to talk to the dietician. So they wouldn't be going back to the physician every week. You would have other people stepping in when they would see from the tracking that you needed support.
Providers emphasized the value of the ePRO tool in helping to generate insights into underlying patient context (ie, patient preferences and readiness) to offer a fulsome sense of how patients are coping, and thereby adjust goals and self-management activities as needed. One provider describes how data obtained through the tool offered a sense of the challenges that her clients face, and this helps to contextualize overall progress toward goals and allows for the timely identification of barriers to self-management:
When [the patient] was experiencing a lot of pain...the other goals drop off because she's not going to be attempting those. And even if [the patient] hadn't linked those then we could have linked them at the visit. But [the patient] had already obviously linked those two things together. So it was kind of nice to have that pain data, to see that...
In light of the growing prevalence of individuals with multimorbidity being managed in primary care settings [
Connectivity with existing mHealth apps (ie, fitness tracking and blood sugar monitoring) was strongly emphasized by both patients and providers, which is an important finding, given that among patients managing multiple conditions [
Patients and providers both highlighted the need to adopt a more patient-centered approach for self-management activities (ie, monitoring protocols offered in the tool) for greater alignment between the tool’s functionality and individual patient context, citing a disconnect between patient goals and the monitoring protocols available in the tool and emphasizing the need for more personalized content [
From the perspective of providers, improving the tool’s alignment with current workflow (such as the incorporation of the SMART goals approach) and integration with electronic health records were key aspects of suggested improvements, indicating the need for proactive consideration of organizational context and provider workflow when developing and implementing mHealth tools [
In this study, both user groups recognized that goal setting and self-management is a fluid process that varies according to a patient’s social and medical complexity and readiness [
Patient feedback indicated they wanted providers to have a more “active” presence through the ePRO tool; the suggestions included push factors, such as regular feedback and encouragement from providers, and alerts if providers observe deviations in results, which is consistent with other studies of self-management using mHealth tools [
In contrast, providers perceived the ePRO tool as a way to enable remote monitoring of patients and intervene as needed, highlighting an important disconnect in expectations between the 2 user groups. This observation differs somewhat from previous research, which found that providers are often concerned about placing too much responsibility around self-management on patients without adequate guidance, emphasizing the need to strike a balance between patient autonomy and provider support [
The challenge of small sample sizes is a common aspect of many studies focused on pilot-testing of mHealth interventions [
Past research has mostly focused on the use of mHealth tools for patients in a single disease group [
Model of the Individual and Family Self-management Theory.
electronic patient-reported outcomes
Individual and Family Self-Management
provider focus group
Patient-Reported Outcomes Measurement Information System
patient focus group
Specific, measurable, attainable, realistic, and timely
We would like to offer our sincerest gratitude to the Bridgepoint Family Health Team staff, providers, clinical lead, executive director, and patients for their time and support for this work. We would also like to acknowledge the support of QoC Health Inc, in particular Sarah Sharpe, Sue Bhella, and Chancellor Crawford as informational technology leads for this work. Funding was provided by the Ontario Ministry of Health and Long-Term Care (Health Services Research Fund #06034) via the Health System Performance Research Network at the University of Toronto.
None declared.