An Analysis of Common Questions and Concerns of Older Adults with Multiple Chronic Conditions

Methods

We developed and administered a visit preparation guide that contains a list of potential topics prompting older adults on multiple medications to discuss with their healthcare providers. The information collected through the visit guide would be useful in the development of a QPL for this population. This study was conducted in an urban area in the Southwest with large indigent populations. Patients from a private family medicine clinic and a family health center of a public safety net hospital system were involved in a trial of a visit guide.²³ The participants included adults aged 50 years or older who were taking 5 or more medications. The visit guide was distributed in both English and Spanish to study participants during clinical visits to accommodate language preferences, and it was developed at a seventh grade reading level. The study population comprised 451 patients, with 211 from the private practice system and 240 from the family health center at the county hospital system. This diverse sample allowed for a comprehensive analysis of patient-clinician communication across different healthcare settings and demographic groups. Initial versions of the guide were developed based on literature reviews and patient interviews, followed by pilot testing to ensure clarity, relevance, and comprehensiveness. Feedback from pilot testing highlighted areas for improvement, such as simplifying the language, adjusting the format to reduce cognitive burden, and ensuring the questions were culturally sensitive and inclusive. The final visit guide had 20 items and were professionally translated to Spanish.

The guide included 3 sections: (1) questions to ask their clinician (8 questions), (2) concerns to tell their clinician (6 questions), and (3) positive behaviors to report to their clinician (6 statements). Space was provided for open-ended comments. The visit guide was designed to be brief to minimize time and burden on older adults. We analyzed responses to the first 2 sections which reflect patients’ questions or concerns related to medications. We excluded the third section from our analysis since the items were by nature statements rather than questions and therefore limits its inclusion in future QPLs. In the first section, patients were asked to select up to 3 questions to ask their clinician. In the second section, patients were asked to select up to 3 things to tell their clinician.²³ Measures were taken to ensure consistency in visit guide usage by having medical assistants hand over the visit guides on paper before the clinician encounter. Medical assistants were trained to follow a consistent protocol for distributing and collecting the guides, which helped maintain uniformity in data collection procedures. Participants were recruited using convenience sampling as they visited the clinic, and they provided verbal consent before completing the visit guide. A visit guide was completed by the patient before their clinician encounter and was used as a communication aid during their visit. All completed guides were collected after the patient visits for this analysis. No audio or video recording occurred during the patient visit. No information was collected on how many people refused to complete the visit guide, as the guide was introduced as part of the clinic encounter for all patients who met inclusion criteria. The full visit guide is provided in the Appendix.

Descriptive analysis for responses was conducted and counts and percentages are provided. Additionally, chi-square and Fisher’s exact test were performed to examine statistical differences in responses to questions between sites. Differences were considered statistically significant at p=0.05. The study was approved by the University of Texas at Arlington and North Texas Regional Institutional Review Boards.

Results

There was a total of 451 filled guides between the 2 locations, and pertinent demographic data are highlighted in the table below.

In both locations, patients expressed varying levels of interest in both questions and concerns, with 307 (68.1%) checking at least one question to ask and 121 (26.8%) checking at least one concern to tell. The most common questions revolved around what changes they should make to their diet (n=92, 20.4%), reducing number of medications (n=69, 15.3%), and learning more about their conditions (n=66, 14.6%). Conversely, the least common questions included reasons for taking several medications (n=37, 8.2%), miscellaneous questions (n=39, 8.6%), and strategies to improve vitals and lab measurements (n=41, 9.1%). Other questions mostly revolved around understanding medication regimens, medication changes, exploring new medications/dosages, medication associated side effects, and specific questions about their conditions. Likewise, patients also had certain concerns they wanted their clinicians to address. The top 3 cited concerns were stopping or skipping medications due to cost, side effects, or other reasons (n=50, 11.1%), managing multiple medications prescribed by different clinicians (n=36, 8%), and having specific issues with their medications, such as costs, difficulty reading labels, or perceived lack of effectiveness (n=26, 5.8%). Meanwhile, the least frequently noted concerns included receiving medications from multiple locations (n=14, 3.1%), accessing medications (n=23, 5.1%), and forgetting to take medications (n=25, 5.5%). These findings, along with responses to other questions and concerns, are summarized in Tables 2 and 3. Lastly, open-ended comments further highlighted concerns around costs, side effects, regimen changes, and a desire to learn more about their health conditions.

Significant differences between clinic sites were identified in “questions to ask” and “concerns to tell” items. Among the “questions to ask” items, participants from the county health system were more likely to select “What should I eat, and what should I not eat for my condition?” (25.0% versus 15.2%, p<0.01), “What happens if I stop taking this medicine?” (17.5% versus 10.0%, p=0.02), and “How can I stop my blood sugar, heart rate, or blood pressure from getting too low?” (12.1% versus 5.7%, p=0.02). Among “concerns to tell” items, participants from the county health system were more like to select “I stopped or skipped these medicine due to: cost, side effects, other reasons” (14.2% versus 7.6%, p=0.03) and “I have concerns with my medicines (examples: costs, hard to read, not helping much)” (9.6% versus 1.4%, p<0.01).

Discussion

The results from the “Questions to Ask” section of the guide showed that patients are interested in educating themselves more about their conditions and treatment plans. Although encouraging patients to ask questions is a common strategy to increase patient engagement and shared decision making, its measurable impact remains unclear.²⁴ The visit guide used checkboxes to reduce cognitive burden in coming up with questions, as studies have demonstrated patient reluctance to ask questions.²⁵ The most common question from Table 2 revolved around patients’ diet and what they should or should not eat given their respective health conditions. Studies have established the importance of diet in both the onset and progression of chronic diseases and healthy aging.^26,27 Furthermore, older adults have an added complexity of physiological decline and psychological stressors that limit their access to dietary options.²⁸ Additionally, the proliferation of various internet fad diets has made it increasingly difficult for patients to understand what kind of diet is or is not beneficial.^29,30 Therefore, the inclusion of dietary questions in a QPL can encourage and remind patients to have a focused dialogue with their clinicians. If the topic of diet is initiated during a patient’s visit, clinicians can utilize educational modalities, such as illustrations, examples, and websites to provide knowledge to help patients make informed, healthy decisions. Studies have shown that nutritional education, including learning how to read food labels, understanding macro- and micronutrients, and measuring daily caloric intake have all had positive impacts on older adults.^31–33

Clinicians should also educate themselves about dietary options that they can offer based on the needs of the patient. Social determinants of health play a significant role in older adults’ ability to consume healthy diets and, therefore, any dietary recommendations should account for such barriers.³⁴ This will require clinicians to be aware of various food resources that are available to patients considering factors unique to their communities. Clinicians should also be aware of opportunities and options for recommending consultation with dieticians for more personalized dietary plans.³⁵

Our results (Table 2) showed that the third most common question patients had revolved around how to learn more about their condition. This question reiterates a common theme among the results that patients want to be educated about their health. This question also highlights the importance of health literacy in healthcare. Studies show that individuals with multiple chronic conditions are more likely to have insufficient health literacy.³⁶ Furthermore, studies also indicate that since low health literacy patients struggle to grasp diagnostic and therapeutic information, they are hindered in their ability to self-manage their chronic conditions and treatment plans.³⁷ Despite patients lacking a good understanding of their conditions, these knowledge gaps are often not voiced during their clinical encounters. We hope that with inclusion of questions regarding chronic condition into a QPL, it may encourage patients to initiate conversations during clinical encounters that will lead to more personalized education and increased disease comprehension.

The most common concern and the third most common concern from Table 3 were related to patients having concerns about medications or stopping medications without consulting a clinician for reasons to include cost, side effects, lack of understanding, or polypharmacy. Medications for chronic diseases can be expensive, often requiring lifelong out-of-pocket expenses. Additionally, the average age of retirement in the US is 65-67 years of age, with many Americans retiring earlier than expected.³⁸ While many can qualify for government programs to aid in the costs of medication and health care, others pay for private insurance or costs out-of-pocket. With personal financial constraints that come with retirement/unemployment and increased need for medical costs, older adults may choose not to take prescribed medications due to the costs. QPLs may provocatively solicit these issues to enable clinicians and patients to make shared decisions on generic medications and to seek out patient assistance programs, such as coupons or discount cards. Studies have found that financial medication assistance has positive impacts on all phases of medication adherence from initiation to discontinuation as well as persistence measured over one year.³⁷ Chronic disease management accounts for a large portion of medications prescribed in the elderly population. Out of 4 common chronic disease management medications, including hypoglycemics, antihypertensives, lipid-lowering, and antidepressants, lipid-lowering medications, like statins, had the highest rate of nonadherence.³⁸ One explanation may be that patients do not see immediate effects from these medications, unlike antidepressants or pain medications.³⁹ QPLs may be used to guide clinic education to target such knowledge gaps.

The second most common question from Table 2 (“Can I take fewer medications”) and second most common concern from Table 3 (“I have new medicines from other doctors”) both underlie a common challenge of polypharmacy. Polypharmacy is especially prevalent in our study population due to having multiple chronic conditions that may require having several specialists involved in their care. As discussed before and shown in previous studies, discontinuing medications that one may perceive as being ineffective due to lack of visible effects is common in healthcare.⁴⁰ These behaviors coupled with overlapping prescriptions from multiple providers increased the risks of adverse drug events and medication errors.⁴¹ Therefore, the inclusion of questions regarding polypharmacy in QPLs is imperative. QPLs can include prompts to encourage discussions post hospitalization on new medications, as studies have found that at the one-month follow-up and three-month follow-up, 28.1% and 25.3% of patients, respectively, understood the reasons for taking their current medication regimen.⁴² Additionally, conducting a medication review during the visit can also help patients stay organized about their medications and encourage questions.⁴³

QPLs may be more critical to older adults with low health literacy and polypharmacy as this population faces unique challenges. As individuals age, they often develop multiple chronic conditions that require complex medication regimens, increasing the risk of adverse drug interactions, and medication errors. QPLs may help identify these risks associated with the ability to understand medical instructions, adhere to treatment plans, and make informed health decisions. Effective patient-clinician communication is essential to mitigate these issues.

A limitation of this study is the lack of data on demographic factors about study participants such as race/ethnicity, income, and education level. While our goal was to collect data on race/ethnicity, data were missing for almost all of the participants from the county health system site. However, the study site was within a high-volume county system with competing clinical priorities. Additionally, the guide was developed to be a tool that could easily be administered in a clinic setting with minimal interruptions to clinic flow such as collecting demographic information. We do recognize that differences in demographic factors could significantly impact the types of questions and concerns patients have. For example, patients with limited financial resources, such as our study population, may be more likely to express concerns about medication costs. Patients with lower levels of education similarly to our study could have difficulty understanding medication instructions. Lastly, cultural and ethnic preferences could impact medication adherence due to varying levels of trust in healthcare. Such information could be useful in assessing the variability between populations and creating specific and impactful solutions. Additionally, we did not record which guides were completed in English or Spanish, which could have clarified whether language barriers influenced patient questions or concerns. Lastly, the chronic conditions of the patients in the study were based on self-report, and patient responses to the visit guide questions could have been altered based on condition and its severity. We did not collect specific information about the number of or names of the specific chronic conditions reported by patients. Our intent was to focus broadly on questions and concerns among older adults with polypharmacy. However, communication priorities could vastly differ between patients depending on their specific conditions and medications and should be explored in future studies. Future studies on the development of a QPL may contain other items such as physical activity and involvement of caregivers which were not assessed in this study. Evaluation studies on the impact of QPLs on clinical outcomes and provider perceptions are also needed to assess the value of QPLs. Furthermore, additional details on sources where patients receive their medications would benefit future research on QPLs and medication safety.

One strength of the study is that it was administered to 2 different patient populations, with one group that utilized a private health system and another group that utilized a public health system. This helps us gain better insight into possible preferences that patients might have based on payer mix and patient demographics.

Conclusion

Effective patient-clinician communication is essential to ensure quality healthcare, especially for older adults who face challenges, such as polypharmacy, limited health literacy, and physiological and financial constraints. Our study highlights the types of questions and concerns most relevant to patients over 50 taking 5 or more medications. Most patients want to have conversations on diet, medication burden, and better understanding their chronic conditions. Insights from this study can be incorporated into a QPL that actively reflects a patient’s priorities. Future efforts should look for similar results in a larger sample of clinics from different geographical regions, to provide a more comprehensive understanding of patient-clinician communication across different healthcare settings. It would also be beneficial to standardize the chronic conditions of participants to assess how specific health issues influence their questions and concerns. Through the use of QPLs, clinicians can better foster engagement, communication, and proactively address patient’s concerns to ultimately enhance patient outcomes in vulnerable populations.