PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Older people who have more than one health problem—such as diabetes, heart disease, and arthritis—may take many medicines every day. People who take their medicines correctly are less likely to get sick and go to a hospital or nursing home. Healthcare providers don’t always ask or understand how well older patients take their medicines.

Project Purpose

This study looked at what patients think, feel, and do when given new prescriptions, to help improve the chances that they will take the medicine the way they should.

Methods

The research team collected information from 29 English-speaking people who were age 60 or older, had three health problems, and were taking at least five medicines. Study participants had also just gotten a prescription for a new medicine.

All participants completed an electronic diary for 30 days to record what medicines they took each day, along with their thoughts and feelings about taking the medicines.

All participants also were asked in a survey about their personal characteristics, such as age or race, their health, the medicines they took, and when they took each medicine.

A nurse interviewed 15 participants at the start and end of the 30 days. The nurse asked participants to describe their experiences with managing their health and taking their medicines.

The research team summarized the findings from the electronic diaries, surveys, and interviews. The research team discussed their findings with patient experts and healthcare professionals and asked for their views on the results.

Findings

In the surveys and electronic diaries, many participants said they didn’t take their medicine the way it was prescribed because

• They didn’t like the side effects, such as dizziness or digestion problems.
• They didn’t always have money or insurance coverage to pay for their prescription.
• Their pharmacy didn’t always have the medicine they needed.
• It was hard for them to get to the pharmacy.
• They didn’t know how to take the medicine properly.
• They worried whether the medicine was right for them.
• They worried that a new medicine would cause problems with other medicines they were already taking.
• They forgot to take the new medicine because they were already taking so many others.

In the interviews, participants spoke about how their illnesses had changed their lives, including how they saw themselves and their relationships with other people. Participants wanted more time with their healthcare providers to talk about their symptoms, ask questions, and learn how to adjust their lifestyle as they learned how to live with their illnesses.

Limitations

The study was small and most participants were white. Also, patients who did not know how to use technology like the electronic diary may not have volunteered for the study. Findings may be different for people of different races and ethnicities or those who have trouble using technology.

Conclusions

Older patients who have multiple health problems find it hard to get their medicines and take them correctly. Patients may not know how to add a new medicine to the ones they are already taking. They may worry about how a new medicine is going to affect their daily life and health. Patients would benefit from guidance on how to discuss their questions and problems with healthcare providers.

Sharing the Results

The research team made instructional videos and other educational materials. They will test the educational materials in a separate study. The research team also wrote articles (see below) and gave presentations about what they learned from this study.

PCORI funded the Pilot Projects to explore how to conduct and use patient-centered outcomes research in ways that can better serve patients and the healthcare community. Learn more.

Background

Older patients who have multiple chronic conditions (MCC) often take many medications to manage their conditions. High rates of nonadherence (not taking medications as prescribed) have been shown to lead to premature hospitalization and nursing home placement. Medication consuming practices are poorly assessed or understood by providers. Therefore, it is critical to examine the process of medication prescribing, as perceived and experienced by patients, to work toward enhancing medication efficacy.

Project Purpose

The research question, “How do older persons with MCC taking multiple medications view and experience receiving a new prescription?” was addressed to build and document foundational knowledge about patients’ medication-taking perceptions, experiences, and behaviors. The study focused on obtaining (1) prospective, longitudinal data about medication-taking perspectives and behaviors among patients treated in a “real world” setting; and (2) an in-depth interpretation of contextual findings in addition to an analysis of specific issues affecting medication use, from the patient perspective, that can be targeted for intervention.

Study Design

A multimethod, longitudinal, qualitative design

Participants, Interventions, Settings, and Outcomes

Persons aged 60 years or older, who were English speaking, visited primary care and specialty clinics, had three chronic conditions, were taking five or more medications, and who received a prescription for a new medication were invited to participate in this study.

Participants were visited in their homes and given an electronic diary with instructions. If they were designated for an interview, it was conducted in the home. The electronic diaries were monitored daily from the research lab and retrieved one month later. Those who participated in initial interviews were interviewed again after one month.

In the electronic diaries, patients revealed that they had difficulties in two areas: access to medicines (e.g., problems reconciling payment from insurance companies, availability of medications at pharmacy, getting to pharmacy for medications) and taking the new medicines (e.g., timing of medication in preexisting medication regimen, concerns about side effects, and worry about whether a medicine was appropriate). Outcomes from in-depth interviews revealed patterns of behavior related to the powerful effects of chronic illness on lifestyle and identity and the need to develop skills to engage healthcare providers.

Data Sources

Thirty participants enrolled over one year were visited by a pharmacist and given an electronic diary to record daily medication-taking thoughts and activities. They were surveyed for demographic information, medications and conditions, and medication-taking practices. Fifteen of these participants participated in two in-depth interviews, conducted by a nurse researcher, first upon initially receiving a new prescription and again when they completed the 30-day electronic diary recording period.

Data Analysis

Multiple methods of analysis were used, including:

• Survey analysis: Structured demographic and informational questions were categorized and summarized, including participant demographic characteristics, whether or not the new medication or all prescribed medications were taken, and self-assessed level of wellness.
• Content analysis: Self-recordings from the electronic diaries were transcribed, coded, and summarized.

Interpretive phenomenological analysis was initiated by two researchers; their interpretations were shared with select members of the research team and with provider stakeholders and community members with knowledge of or experience with the phenomenon of interest. Team members reviewed verbatim, de-identified transcriptions of the interviews and wrote text-substantiated interpretive commentary based on textual analysis of word choices, story structure, and manner of expression. Researchers held analysis sessions every two weeks.

Responses to structured questions and self-recorded content analyses were examined alongside interview data. All results were shared with patient stakeholders and also with a focus group of practitioners, eliciting further commentary. These final analytical sessions incorporated feedback from conference dissemination activities as well, resulting in a form of triangulation or complementary analysis.

Findings

Findings took the form of categorical results and interpretive patterns and themes.

Survey Data

Common reasons participants cited to explain inability to take medications as prescribed included: tolerability (e.g., dizziness with antihypertensive medications; gastrointestinal side effects); transportation difficulties; difficulties accessing medications; and simply forgetting to take the medication due to regimen complexity.

Feasibility of Use of Electronic Diaries

For the 29 participants who completed the study, the average number of daily diary entries was 24 (range 13–30) over 30 days. Overall, study participants reported that they found the process to be simple, despite many never using an electronic tablet prior to participating in this study.

Content Summary

Common barriers to taking new medications as prescribed were categorized in two areas, one relating to problems accessing the prescription itself, and the other related to the process of taking the medication (e.g., timing of new meds, side effects, and worry).

Phenomenological Interpretation

The overarching pattern was supported by two patterns that subsume several themes:

Preserving Self: Living with Chronic Conditions/Being with Healthcare Providers

1. Engaging the powerful hold of my illness
   • Identity—who am I?
   • Function—what can I do?
   • Being with others (friends, providers)
2. Engaging providers in visioning health
   • Claiming health
   • Working with lifestyles 

Patients wanted more conversation with providers to answer questions, help them to adjust their lifestyle, and understand the symptoms they were experiencing. The issue of access alone was exacerbated by social and functional problems. Older adults struggled with these issues and needed tools for engaging with health providers.

Limitations

A small sample size (n = 30) made robust statistical analysis difficult. The study population was 93 percent Caucasian, precluding racial- or ethnic-specific comparisons. Individuals who were less comfortable with technology may have refused participation, creating a possible selection bias.

Conclusions

Older persons with MCC taking multiple medications are challenged by pragmatic issues that include barriers to obtaining medication and challenges assimilating new medications into a full regimen. Side effects and lifestyle interference are common. Communication with providers is essential, but patients need help to prepare for contact with providers so they can fully manage their health.