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Published on 04.04.16 in Vol 2, No 1 (2016): Jan-Jun

This paper is in the following e-collection/theme issue:

    Original Paper

    Why do Patients Forget to Take Immunosuppression Medications and Miss Appointments: Can a Mobile Phone App Help?

    1Hennepin County Medical Center, Department of Medicine, Minneapolis, MN, United States

    2University of Minnesota, Department of Epidemiology and community Health, Minneapolis, MN, United States

    3Minneapolis Medical Research Foundation, Minneapolis, MN, United States

    4University of Minnesota, Department of Renal Diseases and Hypertension, Minneapolis, MN, United States

    5Center for Policy, Outcomes and Prevention and Division of General Pediatrics, Stanford University School of Medicine, Palo Alto, CA, United States

    *these authors contributed equally

    Corresponding Author:

    Ajay Israni, MSc, MD

    Hennepin County Medical Center

    Department of Medicine

    701 Park Ave

    Minneapolis, MN, 55415

    United States

    Phone: 1 612 873 6987

    Fax:1 612 873 1655

    Email:


    ABSTRACT

    Background: Kidney transplant recipients must adhere to their immunosuppressive medication regimen. However, non-adherence remains a major problem.

    Objective: The aim of this paper is to determine how kidney transplant recipients remember to take their medications, and assess their perception and beliefs about adherence to immunosuppressive medications and barriers to medication adherence. In addition, we aim to assess perception and beliefs about willingness to use a hypothetical, mobile phone app to improve adherence.

    Methods: We conducted a qualitative study that included an average of three home or workplace visits of kidney transplant recipients (N=16) from a single urban transplant center.

    Results: The qualitative study revealed that transplant recipients understood the importance of taking their immunosuppressive medications and this motivated them to take their medications. The visits showed that most participants have incorporated medication use into their daily lives and that any minor deviation from daily routines could result in non-adherence. Participants also reported other barriers to adherence. All participants were interested in using an app to remind them to take their medication; however, they reported potential barriers to using the app.

    Conclusions: Although kidney transplant recipients understood the importance of medication adherence, there were significant barriers to maintaining adherence. Participants also reported interest in using a mobile phone app.

    JMIR Public Health Surveill 2016;2(1):e15

    doi:10.2196/publichealth.5285

    KEYWORDS



    Introduction

    Despite advances in solid organ transplantation, allograft failure due to non-adherence to immunosuppressive medications and follow-up visits remains a major problem [1-12]. Several clinical studies in kidney transplantation have highlighted the negative impact of non-adherence on kidney function post-transplant [2-8]. Post-transplant care requires at least two or three oral immunosuppressive medications and intensive monitoring of kidney function during frequent follow-up visits [1]. Therefore, there is a dire need to understand how patients take their immunosuppressive medications.

    A novel approach to improving adherence is the utilization of mobile phone medication adherence apps and the use of text messaging (short message service, SMS). A national study by the Pew Research Center reported that 90% of all American adults own a mobile phone, 58% own a mobile phone with app capabilities, and 42% own a tablet computer [13]. The use of mobile phones is increasing among kidney transplant recipients, especially among African Americans and those with lower household incomes [14]. This technology has shown promising results of improved medication adherence in the areas of HIV, tuberculosis, diabetes mellitus, asthma, and emergency department-prescribed antibiotics [15-20]. Adherence apps linked to an electronic medication tray and a wireless Bluetooth-enabled blood pressure monitor has been tested in kidney transplant recipients [14,21]. To the best of our knowledge, no other adherence apps tailored to kidney transplantation have been tested.

    In order to understand kidney transplant recipients’ perceptions and beliefs regarding barriers to medication adherence and potential use of a mobile device platform (presented as paper mock-ups) to improve adherence, we conducted one-on-one semi-structured interviews and home or workplace visits among kidney transplant recipients.


    Methods

    Participants

    Transplant recipients were enrolled from August to December 2012 at Hennepin County Medical Center (HCMC). The purposeful sample of ethnically diverse transplant recipients was enrolled based on the perceptions of nurse coordinators that the subjects were either highly adherent or poorly adherent to immunosuppressive medications. Inclusion criteria included the ability to communicate in English, and residence in the Twin Cities area and surrounding suburbs in order to improve feasibility of conducting the interviews. At HCMC, among the 226 recipients transplanted from 2010-2012, 18.1% (41/226) were African American and 3.1% (7/226) were Hispanic. The transplant center actively follows approximately 800 recipients with a kidney transplant. The post-transplant care at the transplant center is routinely managed by a nephrologist. All transplant recipients are seen by a transplant pharmacist at a minimum interval of 2 weeks, 4 weeks, 3 months, 6 months, 12 months, 18 months, and 24 months post-transplant, and yearly thereafter.

    All participants were invited for one-on-one semi-structured interviews and home or workplace visits. Initially, twenty participants were enrolled. Four participants dropped out for various reasons such as depression, living with boyfriend, construction at home or traveling. The data on these participants are not included. Each participant gave informed consent and the study was approved by the Human Subjects Research Committee at HCMC.

    Procedures

    Guides for the semi-structured interviews and home or workplace visits were developed with input from the study investigators. The questions used in the guide, which include closed and open-ended questions, are shown in Textbox 1.

    The interviews and visits were conducted by the same individual (BK) who was coached on anthropologic approaches by CJW and/or AI before and weekly during the study. Key findings were discussed with other investigators (CJW, AI) in weekly to bi-weekly meetings for reflection. No clinic or medical personnel were present during these encounters to ensure solid rapport and full disclosure by study participants. The study design included individual interviews for several reasons such as (1) the interviews were conducted during several home or workplace visits; (2) they increased the interviewer’s familiarity with study participants’ perceptions and beliefs; and (3) they improved trust-building efforts to elicit sensitive data about adherence to medications and appointments during home or workplace visits.

    The semi-structured interview methodology was informed by inductive reasoning. While quantitative studies use statistics to establish reliability and validity, qualitative research relies on trust and rapport-building. The semi-structured interviews require the skill of keeping participants on task, maintaining rapport with all to ensure equitable but not peer-pressured participation, and maintaining a high degree of comfort discussing sensitive topics [22]. All interviews were audio taped and reviewed by two authors (BK, AI). The later portion of the semi-structured interview consisted of an oral survey to collect demographic and transplant-related information. The participants’ electronic medical records were reviewed for other medical information.


    Textbox 1. Kidney transplant recipients’ interview questions from the Moderator’s Guide. Question number 16 and onwards were designed to assess perception, beliefs, and willingness to use a mobile phone app (presented as a paper mock-up) to improve medication adherence.
    View this box

    Data Analysis

    Qualitative data was collected and analyzed according to the principles of grounded theory. Coding is an iterative process produced through several discussions by researchers to establish broad codes and then further refine the code.

    The digital audio tapes of the interviews were transcribed verbatim and visit notes were transcribed to produce 124 pages of text. Coding was done manually without the use of specialized coding software. Two authors (BK, AI) reviewed the transcripts manually, line-by-line to generate a preliminary coding scheme through consensus: a list of codes and corresponding definitions. Therefore, no formal measure of agreement was generated for the codes generated by the two authors. The codes were ordered by thematic similarity or relationship into a project codebook. The resulting themes reflected ideas that emerged over a variety of areas of inquiry by the research team. Quotations that most closely represented the theme were then selected to support the analysis. The data from the transcripts was supplemented with notes taken during home or workplace visits.


    Results

    The characteristics of the study participants are shown in Table 1. All subjects were interviewed at their residence; however one subject was interviewed at his place of work and one at a coffee shop near her place of residence. The average of 3 visits per participant showed that most participants have incorporated medication use into their daily lives, such as one participant keeping morning medications by the car keys in order to remember to take the medications before leaving for work in the morning. However, any minor deviation from daily routines may result in non-adherence. With one exception, no participants had used electronic reminders on a phone (not a mobile phone) to alert them to take their medications. The one subject that did use reminders utilized the alarm feature on his mobile phone and would not turn off the alarm until he took his medications. None of the participants had mobile phones with app capabilities.

    With one exception, all participants used pill boxes due to the large number of medications required. Some subjects also had a smaller pill holder, such as a plastic bag, to carry a single dose of medications. Having this smaller pill holder sometimes resulted in missed medications as some subjects forgot to put medications in this smaller pill holder or forgot to ingest the medications due to deviations from their daily routines.

    Seven families of codes or themes were identified and yielded 133 non-discrete quotations. These seven main themes structure the rest of this paper.

    Motivated to Take Immunosuppression Medication

    Study participants demonstrated a clear understanding of the negative consequences of not taking their immunosuppressive medications (Theme 1, Table 2). They mentioned that non-adherence could increase their risk of rejection and increase risk of returning to dialysis. Taking the medications reassured them they would not experience rejection.

    A participant described his motivation for taking his immunosuppression medications: "So I don’t have to go back on dialysis." Participants dreaded the return to dialysis. One participant remarked: "...I want this kidney to work. I don’t like the alternative (dialysis)."

    Participants' Perceived Barriers to Taking Immunosuppression Medications

    The participants reported barriers to adherence such as forgetting to take or renew medications, procrastination, being short on money, having depression, distractions, change in daily routine, forgetting medications while away from home, alcohol use, and falling asleep before taking evening dose (Theme 2, Table 3)

    "I thought that I took it that morning, but then later on in the afternoon when I look at the medication package I found out it was not taken." Some patients found it difficult to maintain compliance while traveling:

    If I’m in California I have to get up at 5:30 and take my (morning) medications at 6:00…I take them at 8:00 central time regardless of what time zone I’m on.

    Other participants admitted to simply overlooking their medications "…I just had forgotten to renew them…"

    Reported Factors That Helped Participants to Take Their Immunosuppression Medications

    Factors that help patients remember to take their immunosuppressive medications include creating a routine around taking their medications, monitoring their medication supplies regularly, using a travel-sized pill holder, having a support system, making medications a top priority, taking medications earlier in the day and trusting their physician (Theme 3, Table 4). Surprisingly, only one participant set an alarm.

    I kinda like my alarm (that just) goes off. It only goes off twice a day. So once in the morning, I have it go off at 8:30 so that if I’m asleep then I can get up and be ready by 9:00 o’clock to take my meds. And then at night it goes off by 8:50 so I can take my meds at 9:00. It gives me a little 10 minute window

    Another participant noted the help he received from the pharmacy:

    The pharmacy has been doing well. They remind me about my medication. Call me to check on my medications to know which one I should…refill…So they are a help to me.

    Motivated to Keep Appointments

    The study participants were motivated to keep their appointments. They referenced their appointments as a way to stay alive and healthy and to monitor their kidney function (Theme 4, Table 5).

    Well I choose to go to my appointments so we can monitor the kidney function. Make sure all my levels are where they need to be.

    Another participant cited similar curiosity to their health status as a reason to keep appointments:

    It’s a necessary part of my treatment. I want to know. I’m curious to see how I’m doing. I like to talk to (the doctors), I have questions, I’m curious.

    Participants' Perceived Barriers and Motivation to Keeping Appointments

    The study participants reported some barriers to keeping appointments such as transportation, busy schedule, forgetting, not feeling ill or due to personal sickness or sickness in the family (Theme 6, Table 6).

    My schedule. I mean I have to do a lot of working around my schedule and then sometimes the clinic is not (open), I think the clinic needs to have extended hours because it just makes it hard

    Some patients found it difficult to maintain appointments when they were not feeling well:

    I think I’m alright because I’m not that bad right now. So I didn’t go…

    Reported Factors That Helped Participants to Keep Appointments

    The participants reported scheduling recurrent visits on the same day of the week, various types of reminders and support from others as strategies to keep appointments (Theme 6, Table 7).

    "When they first started it (the appointment) was Monday, Wednesday, Friday, Monday, Wednesday, Friday then it went down to just Wednesdays, and now I’m going to (every) two weeks so it’s every other Monday." Some participants utilized electronic medical record patient communication tools to maintain appointments:

    I have MyChart and I get emails…‘You have so and so many appointments,’ and I’ll click them and then oh yeah that’s a reminder.

    Perceived Barriers to a Medication Adherence App

    The participants voiced concern regarding their mobile phone being turned off or inaccessible, missing the alarm, and inflexibility of the app to adjust to irregular schedules (Theme 7, Table 8).

    If I was in a job interview I would have my phone possibly off or on vibrate…in a meeting it is just common courtesy to do that (turn off phone)…Anywhere from one hour to all day. But there are frequent breaks and during that time everyone checks their phones.

    Other participants expressed concern about ignoring their phone during the day: "…when you are pretty busy or when you are enjoying sometimes you don’t look at the phone."

    Table 1. Characteristics of study participants (N=16).
    View this table
    Table 2. Motivated to take immunosuppression medication (coded 15 times).
    View this table
    Table 3. Perceived barriers to taking immunosuppression medications (coded 35 times).
    View this table
    Table 4. Helps patients to take immunosuppression medications (coded 23 times).
    View this table
    Table 5. Primary motivation to keep appointments (coded 16 times).
    View this table
    Table 6. Perceived barriers to keeping appointments (coded 13 times).
    View this table
    Table 7. Helps patients to keep appointments (coded 22 times).
    View this table
    Table 8. Future perceived barriers to the app (coded 9 times).
    View this table

    Discussion

    Principal Findings

    The kidney transplant recipients that participated in these interviews demonstrated an understanding of the importance of immunosuppression medications. Commonly cited reasons to remain compliant included to avoid dialysis, stay alive, prevent rejection, and witnessed complications from noncompliance in family members (Table 2). Despite these appropriate concerns, participants shared numerous perceived barriers to maintain perfect adherence to immunosuppression medications. These barriers included simply forgetting to take or renew medications, procrastinating, being short on money, having depression, getting distracted, change in daily routine, forgetting medications while away from home, alcohol use, and falling asleep before taking evening dose (Table 2).

    We found it reassuring that our participants identified understanding the importance of immunosuppression medication. In a previous publication using mailed surveys, Chisholm-Burns et al identified that kidney transplant recipients were more likely to miss doses of medications when they acknowledged a weaker belief on the necessity of maintenance immunosuppression medications [23]. Our results suggest that among the participants in our study, present efforts to educate kidney transplant recipients on the importance of immunosuppression are successful to a large extent and should be continued [24,25].

    Similar to our findings, several previous investigations have reported patient-identified barriers to medication compliance. Consistent with our findings, these publications have cited limited financial resources, and forgetfulness, interruption of daily routine, travel or leaving home, change in dose, run out of medications, and no immediate access to a pharmacy as barriers to compliance [23,25-27]. Intentional non-adherence has been found previously to be significantly lower than unintentional non-adherence among kidney transplant recipients [26,28]. We found a similar trend among responses in our study. This suggests that larger improvements in adherence may be seen with strategies designed to remind patients to take medications and facilitate delivery and administration of medications in addition to education them on their importance. The behavioral change theories commonly used in mobile app applications, such as health belief model (perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action, and self efficacy), and social cognitive theory (self efficacy, expectations, behavioral capability, observational learning, reinforcements, and reciprocal determinism), combined with behavioral techniques such as nudges (eg, loss aversion, anchoring, and benchmarking), can facilitate medication adherence [29-31].

    Interestingly, when we tested the idea of using a paper mock-up of a mobile phone app specifically designed for kidney transplant recipients we receive generally positive responses. While some participants reported interest in this utility, others raised concerns with this proposal such as what would happen when the phone was switched off or not in their immediate proximity, developing annoyance to a phone alarm, and the inflexibility of the app to adjust to chaotic and changing schedules were concerns raised by participants (Table 8). A recent review of mobile phone medication adherence apps identified 160 currently on the market. While their efficacy remains untested, medication adherence apps offer many potential benefits that include constant accessibility, ease of use, low cost, and ability to consolidate all medication-specific information for the patient and provider. Based on their respective capabilities and ease of use, the review distinguished ten medication apps as noteworthy. These apps are MyMedSchedule, MyMeds, MedSimple, Med Agenda, RxmindMe Prescription, Dosecast, TRxC (Beta) MediMemory, PillManager, and MedsIQ Individual/Multi-user. No free-standing app, however, was specifically tailored to kidney transplant recipients [32].

    In response to the concerns identified by participants in this study, it is our belief that a mobile phone app designed for kidney transplant recipients would have the following features. First, it would be easy to input a multi-drug regimen into the app. Second, the app would offer a choice of options for notification of medication due time. These options would include a standard text message, an email generation or alarm feature when a medication would be due. Third, the app could generate a reminder of a due medication without cellular connectivity. Fourth, the app would feature a "snooze" button to allow for an additional reminder to take the medication if the user was unable to complete the task immediately. Fifth, instead of just a simple reminder, the app would have a feature that allow the user to voluntarily indicate if they did or did not take the medication and note the time when this occurred. This data could be collated and downloaded at the physician office as a way to prompt discussion between the caregivers and the patient of methods to improve adherence. Sixth, the app could communicate with the patient’s primary pharmacy and facilitate refills as they become necessary to prevent lapses in medication availability. Finally, any app created based on this input would have to be tested extensively among transplant patients to ensure the app engages the patients through social competition [33], and individual encouragement [34]. Previous focus groups have shown that peer-support relationships and talking to other patients on dialysis therapy have motivated transplant recipients [33].

    To our knowledge, no studies utilizing mobile phone apps to improve outcomes in kidney transplant recipients have been published. One study of pediatric liver transplant recipients showed significant reduction in variation of tacrolimus levels using text messaging reminders and suggests that adopting this reminder system may lead to improved medication adherence and decreased episodes of rejection [35].

    Limitations

    There are several limitations in the current study. First, although we had a diverse group of participants based on their socio-economic information, this study was conducted with a small sample size of prevalent patients in a single center study. In addition, common themes were appearing in the qualitative data provided by the participants. Second, four patients with unstable living situations or depression dropped out of the study; thus, it is possible we may have missed some issues specific to vulnerable populations. We did not include patients that lost their allograft due to noncompliance. However, our findings are generally consistent with previous survey responses regarding the reported barriers to medication adherence from other transplant centers [23,25-27]. None of our subjects had mobile phones, despite no purposeful sampling in regards to access to mobile phone was used. The mobile phone use in 2012 at our county hospital was likely low. Lastly, we did not measure adherence in our study participants; thus, the barriers and facilitators to adherence may be participants’ perceptions.

    From this qualitative study of medication adherence practices, it is clear that patients have incorporated medications into their daily lives and schedules, but that any variation to this schedule increases the risk of noncompliance. In addition, there are numerous barriers to medication adherence that participants in our studied identified, and participants utilized a variety of techniques to reduce the influence of these barriers. While no transplant-specific app exists presently, an app tailored to the needs of a busy transplant recipient may improve medication adherence.

    Acknowledgments

    The authors thank HCMC transplant clinic staff for assisting with patient recruitment. This study was supported by NIH grant 5U19-A1070119.

    Authors' Contributions

    All of the authors performed the data analysis and interpretation, drafting, revision, and approval of the final article. CJW and AI provided the concept and design of the article.

    Conflicts of Interest

    None declared.

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    Abbreviations

    HCMC: Hennepin County Medical Center


    Edited by T Sanchez; submitted 26.10.15; peer-reviewed by P Reese; comments to author 01.12.15; revised version received 14.12.15; accepted 14.12.15; published 04.04.16

    ©Ajay Israni, Carl Dean, Brian Kasel, Lisa Berndt, Winston Wildebush, C Jason Wang. Originally published in JMIR Public Health and Surveillance (http://publichealth.jmir.org), 04.04.2016.

    This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Public Health and Surveillance, is properly cited. The complete bibliographic information, a link to the original publication on http://publichealth.jmir.org, as well as this copyright and license information must be included.