Enhancing Adherence: Using Mobile Health Technology to Improve Self-Management for Individuals With Schizophrenia

Individuals with a diagnosis of schizophrenia or another serious mental illness demonstrate an improved prognosis if they closely adhere to medication and psychosocial treatments (1). However, an estimated one-third of individuals with serious mental illnesses disengage from mental health care. Risk factors for mental health treatment dropout include younger age, male gender, racial-ethnic minority background, low social functioning, co-occurring psychiatric and substance use disorders, and early-onset psychosis (1). Individuals with a serious mental illness have cited the inability to actively participate in treatment decision making, unsympathetic providers, and not feeling listened to as prominent reasons for dropping out of mental health treatment (2). Emerging literature on patient-centered care and shared decision making in psychiatry provides evidence that patients who participate actively in their mental health treatment decisions are more engaged with their treatment and see improved outcomes (1, 2).

Mobile health technology has been used to improve monitoring for and enhance self-management of individuals who have schizophrenia or another serious mental illness (3–5). For example, ecological momentary assessment (EMA) and ecological momentary intervention (EMI) are technologies used to track fluctuations in experiences and prompt behavioral responses within the context of a person’s daily life (6). Online and smartphone-based delivery modalities offer simple, accessible interventions. EMA and EMI have potential applications for management of mental disorders, capitalizing on key capabilities of mobile technologies to provide a means of accurate assessment. Such assessments and reminders may be especially beneficial for individuals with schizophrenia, because difficulties with memory and executive functioning that frequently accompany this disorder can limit accurate perception and recall of past events and impair motivation (7). EMI can also be used to remind patients of intervention strategies in the moments when they are needed. For example, these technologies may cue individuals to report symptoms, take medications, and provide guidance regarding health-promoting behavior (4, 5). They also typically allow patients to easily request information and assistance. Mobile technology may assist with regular self-monitoring, which has been demonstrated to improve symptoms of psychosis (8). Thus, mobile technology has the potential to empower patients with serious mental illness to take a more active role in their own mental health management as a key element of their recovery (9). Regular remote monitoring of information populated by individuals with serious mental illness may also help to identify signs of relapse, which may then trigger more active clinical intervention and support (6).

Several programs utilize mobile technology for monitoring and supporting individuals with serious mental illness. For example, Mobile Assessment and Treatment for Schizophrenia (MATS) uses ambulatory monitoring methods and cognitive-behavioral therapy interventions to assess and improve treatment effectiveness for individuals with schizophrenia through mobile phone text messaging. The three treatment targets of MATS intervention include medication adherence, socialization, and auditory hallucinations (7). Another smartphone intervention designed for individuals with schizophrenia is FOCUS-AV, which offers both prescheduled and on-demand illness management interventions targeting auditory hallucinations, social functioning, medication use, mood problems, and sleep disturbances. FOCUS-AV also includes a video version of the material—prerecorded by clinicians to discuss illness management strategies that would typically be provided through live therapy (10).

Not all patients with psychotic disorders embrace the use of mobile technologies and electronic monitoring. Granholm and colleagues (7) found that patients with more negative symptoms, lower functioning, and lower premorbid IQ tended to demonstrate lower engagement in mobile health interventions. Some clinicians have been concerned that mobile health technologies may precipitate suspiciousness in some patients about how the information garnered from this technology may be used or shared (3). In addition to potential issues related to privacy and ethics, some authors have suggested that technology may interfere with trusting the clinicians on the clinical team and with engagement with the intervention (11). However, Ben-Zeev and colleagues (12) reported that individuals with schizophrenia expressed interest in using their own personal mobile phones to support their recovery, including the use of services such as check-ins with providers, text message appointment and medication reminders, and symptom monitoring. Results from mobile health studies suggest that mobile interventions are both feasible and acceptable among many individuals with schizophrenia, with evidence of high participant satisfaction, usage rates, and response rates to text messages (12).

Clinical Vignette

Bing! Ms. Smith pulled her smartphone from her pocket and peered intently at the new text message. She was participating in a mobile technology intervention to help her manage her hallucinations and stick to a daily routine, including taking her medications. She had recently moved out of a sheltered-living apartment and now lives in her own apartment. This was an important goal for her, and she felt fulfilled to have reached it. But she also felt nervous. What if she wasn’t as self-sufficient as she thought? What if she ended up back in the hospital? She didn’t want that.

Ms. Smith had accepted an offer by her assertive community treatment (ACT) team to participate in the smartphone intervention. She was skeptical at first. Were they going to monitor everything she did? Was she going to have any privacy? What would they do with the information? Her “voices” were starting to mumble again. That wasn’t a good sign.

Ms. Smith had considered refusing the offer to participate in MATS—the mobile technology program that uses a mobile app and text messages to help her monitor symptoms. However, after discussing the pros and cons at length with her ACT team, she decided to give it a try.

She peered at her smartphone. “Hmm—time to track my symptoms,” Ms. Smith mused. “Let’s see—voices—some mumbling.” Ms. Smith tapped the smartphone to record her answer. “Medication—yes, I took it last night. Socialization—not really. Well, I texted my sister—that counts.” Ms. Smith completed entering her ratings and pushed the “Save” button.

Bing! She received a message back. “Thank you for recording your symptoms. You have recorded for 6 straight days—great job! Remember, if you need any help with the app or need something from your ACT team, just use the ‘Need help’ button. If you are having more symptoms or not feeling safe, push the ‘Help urgent’ button. Keep up the good work!” A few hours later, another text message came. “Remember, you have an appointment with Dr. Khan, your psychiatrist, tomorrow at 2:00. The medical cab will pick you up between 1:15 and 1:30 at your apartment. Do you want another reminder at noon tomorrow?”

Ms. Smith smiled to herself. She thought, “This app is sort of like having voices nagging at me to do something, except they are encouraging met to do something healthy. And it’s okay for me to answer back. I wonder what my ACT team would think if I told them that. Maybe I will. I think Dr. Khan would find it funny. Sure, I’ll take another reminder tomorrow at noon. Just in case.” She tapped the phone and then placed it carefully back in her pocket.

On the next day, Dr. Khan smiled warmly as he greeted Ms. Smith when she arrived for her appointment: “Hello, Ms. Smith. It’s good to see you.” In the office, Dr. Khan carefully reviewed Ms. Smith’s symptoms, medication effectiveness, and potential adverse effects. “How do you like the MATS program?” he queried. “I see that you have been using it regularly. Do you want to see your data in a graph?”

“Um, okay,” Ms. Smith tentatively replied.

Dr. Khan pressed “Print.” As the page printed out, Ms. Smith told Dr. Khan that the “app seems sort of like having voices, only instead of them nagging me to do something negative, they encourage me to take care of myself. I thought you might think that was funny.” Dr. Khan smiled broadly. “I think I see what you mean,” he replied. He cocked his head pensively and inquired earnestly, “Does the app seem to talk to you?”

“No, Dr. Khan. I know the difference between my cell phone app and voices.” She paused, formulating her next reply. “Maybe it’s like a transitional object that we talked about. It sort of feels familiar, but not scary…. I also feel safer knowing I can get ahold of my ACT team if I need them.”

Ms. Smith and Dr. Khan reviewed the MATS graph together and discussed how the move into her apartment had gone; how the “mumbling” suggested that she was rather anxious but that she was using the app, her team, and coping skills to stay on course toward her goals.

“You’re amazing,” Dr. Khan remarked. “Even when it is really scary and hard, you have set your goals and done the work to reach them.” Ms. Smith couldn’t stifle a broad, satisfied smile.

Tips for Optimizing Patient Self-Management Through Mobile Technology

Given the nature of schizophrenia and the potential for adverse consequences of treatment dropout (exacerbation of psychotic symptoms, psychiatric hospitalizations, homelessness, and the potential for harm to self or others), close monitoring and engagement in treatment is of primary importance (9). Mobile technology is one method of ongoing symptom monitoring and engagement that is being used to decrease psychotic symptoms and more successfully enhance patient self-management. Younger patients may feel particularly comfortable with technology and have fewer qualms about its use than older patients with serious mental illnesses (6).

Some authors are more skeptical about encouraging patients to be “digitally engaged” (11). Lupton (11) has argued that the health care policy literature may have overidealized the “techno-utopian” potential afforded by digital health technologies. Notable concerns included ambivalence by both patients and health care providers about the surveillance and disciplinary dimensions of using these technologies, the emotions and resistances they provoke, their contribution to the burden of self-care by the patient, and the invisible work on the part of health care workers that they require to operate. This complex set of issues needs to be acknowledged, and further research is required to understand and address these potential barriers (13).

Mobile technology is most successful when it is user friendly, chosen by the patient, and accompanied by trusted provider support. Motivated patients who choose to use mobile applications have described satisfaction with the technology. The monitoring data provided are useful for the patient to self-monitor and useful for the staff involved in treatment to gauge the intensity of patient clinical support required (10). When mobile technology interventions are paired with a team approach to care, the patient may become more active in treatment decisions and more engaged with symptom monitoring. Treatment staff who also monitor the data can be prepared to meet the patient “where he or she is,” in terms of symptoms and clinical care needs (6). Engaging patients and the mental health team around the pros, cons, and complexities of digital monitoring is important in preparing for the benefits as well as the challenges posed by digital engagement (13).

The following are tips for considering the utility of mobile health technologies for individuals with serious mental illness and engaging the treatment team and patient in implementation (14–16):

1. A team-based approach to treatment of individuals with serious mental illness is recommended. Clinical judgment should guide the application of technology in the clinical context. If mobile health technology is being considered or implemented (including participation in a mobile health implementation research project), clarify the role of technology and the interface between mobile mental health and direct clinical care.

2. Engage mental health professionals in the discussion and implementation of the mobile technology. How will the technology assist in patient care? What are the potential drawbacks? Is this intervention financially viable? Is there an increase in administrative time? How will this be accomplished?

3. Address issues of privacy, security, Health Insurance Portability and Accountability Act (HIPAA) and Health Information Technology for Economic and Clinical Health (HITECH) laws, ethical principles and enforceable ethics standards, and practice guidelines that are essential to successfully incorporating and managing the technologies available. Clarify procedures regarding loss of a mobile health device.

4. Engage patients in discussion and implementation. Do they use their own device? Is one being provided? How will they be trained to use it? What are the capabilities that are most important for patients?

5. Uphold informed consent requirements. Clinicians and clients should thoughtfully consider and discuss the risks and benefits of technology-based tools as part of the therapeutic process. The clinician should discuss

   1. Services process and alternatives: whether the service will be synchronous or asynchronous, frequency of interactions, which individuals will have access to the information, and alternative treatment options.

   2. Benefits: increased access to care and enhanced services, privacy, reflection time, access to specialists, and potential for self-management of symptoms.

   3. Risks: potential for privacy breaches, misunderstandings (text-based and video-based risks), level of accessibility to treatment staff and safety concerns, potential for increasing suspiciousness, and technical challenges with the device.

   4. Confidentiality of communications and records: Legal exceptions that apply to telemental health or mobile technology are the same as in-person clinical work, including child abuse, elder abuse, medical emergencies, threats of violence, or danger to self, as dictated by state and federal laws.

   5. Emergency procedures: expectations for response to postings, e-mails, telephone calls, or text messages; emergency and crisis service contact information; and steps providers may take if concerned about safety of a patient.

6. Practice shared decision making in health care planning. Patients should be fully aware of the privacy issues involved in mobile health interventions, including pros and cons and specifics of how to utilize the programming.

7. Write down agreed-upon goals and treatment plans, and “sync” them with the mobile app (i.e., specify what information will be tracked that is in synchrony with the patient’s goals).

8. Specify a priori which mobile health metrics are important to the patient and his or her recovery efforts and which metrics will be monitored. Share the mobile health data with the patient to have a clear, patient-centered, and nonjudgmental method of determining the level of services provided.

9. Specify a safety plan, monitor safety with mobile health and in-person appointments (ensuring no weapons are in the home, asking about command hallucinations, etc.). Specify how the mobile technology may be used to enhance safety and a crisis plan.

10. Invite the patient to have family members or significant others involved (with consent) to improve social networks, encourage adherence, and understand how the mobile health technology is being used in the patient’s recovery process.

11. Acknowledge appreciation of honesty and the efforts of the patient at illness management and treatment engagement.

12. Clinicians, patients, and other stakeholders should continually work together to shape, maintain, and refine models for the adoption and use of technology-based therapeutic tools in treatment.

13. Collaborate with other physical health providers to ensure that the patient’s treatment is as integrated as possible.