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Transcription:

Jasmine Nicole: Hello and welcome to the first episode in the Avalere Health Essential Voice series focused on the findings and themes from Avalere’s journal club. In this series, we will provide commentary on a contemporary healthcare publication presented at an internal journal club meeting in May. Avalere hosts a monthly journal club to critically assess newly released studies in terms of its methods and analyses and discuss how the findings can be applied to our work.

My name is Jasmine Nicole Namata and I am an Associate here at Avalere. Joining me today is Courtney Ramus, a Consultant in the Center for Healthcare Transformation. Courtney has a background in patient engagement, shared decision making, and health disparities.

In today’s episode, we will be debriefing on the article titled “Understanding of Key Obstetric Quality Terminology by Asian and Pacific Islander Subgroups: Implications for Patient Engagement and Health Equity” by Mary Guo published in the Maternal and Child Health Journal in 2018.

To kick us off, the goal of this study was to consider whether commonly used childbirth related health quality terms were understandable to diverse women, including Asian American and Pacific Islander (AAPI) subgroups, and how comprehension varied by relevant factors, such as health literacy, education, race, and ethnicity. The researchers sought to answer the question of: “Amongst AAPI women who had recently given birth, what is their comprehension level of 10 common obstetric terms?” The study highlights the important role that comprehension of quality terminology plays for patient engagement across diverse populations, specifically in maternal care.

For background, the authors note that 30% of Asian Americans are likely to have low health literacy compared to white Americans, with a low health literacy level of 16%. The authors also note that 44% of the Asian Americans who have limited English proficiency are also likely to report low health literacy. This is concerning because gaps in health literacy can disproportionately affect these minority groups and those with lower socioeconomic status more drastically. However, while there is growing work that investigates health literacy and various health conditions, AAPI subgroups are often underrepresented or limited in research, especially in women’s reproductive health.

In the methods section of the article, it details the mixed-method interviews that were conducted with women in Hawaii who had a recent childbirth. To determine their use of healthcare quality information, researchers recruited for about 2 years—from July 2013 to July 2015—and had specific inclusion and exclusion criteria for participants. Among those who qualified, demographic data was collected. In the interview, participants were asked to read out loud and explain the meaning of 10 obstetric quality terms. And participants were also assessed for their subjective health literacy and objective health literacy through a validated question and Rapid Estimate of Adult Literacy in Medicine (REALM) Health Literacy Test tool, respectively.

Through this study, it uncovered a range of understanding of key obstetric terms amongst study participants. Words like breastfeeding and Cesarean section (C-section) were commonly understood but other words like primary C-section were not understood. And even some words like episiotomy and VBAC (vaginal birth after cesarean) were not well known or understood among the participants, despite the impacts these could have on their health. The article also found that comprehension of obstetric terms varied amongst AAPI subgroup participants. Those who identified as Filipino, Japanese, Native Hawaiian, or Pacific Islander, as well as having low objective health literacy and only having a high school degree were significantly associated with less total comprehension.

Lastly, the author postulates that comprehension of quality terminology has the potential to improve patient engagement. Without knowledge of critical terminology, it can be challenging for patients to be engaged participants who seek and demand high quality maternity care. To pivot, Courtney, you have done a lot of work in healthcare quality measurement and have conducted research in quality improvement. What is quality terminology and how is it used?

Courtney: Broadly, quality terminology refers to terms that are associated with high-quality care in a particular area, such as maternity care, cancer care, inpatient care management, or medication safety. These terms are commonly used in patient-provider interactions and commonly referenced with regards to treatment or treatment-related decisions. For example, some of the terms assessed in the article were episiotomy and C-section because rates of episiotomy and C-section are commonly referenced during maternity care.

Quality terms are not only commonly referred to during maternity care, but also commonly used to assess quality of care within a particular setting. So, with C-section, rate of C-section within a hospital is commonly assessed as a marker for high-quality care. Hospitals that are below a threshold for percentage of births that are C-section are considered to meet standards for quality maternity care.

As noted in the article, patients can use hospital quality reports to assess which hospital to seek treatment within. These reports may be released by state or federal government or other private organizations like The Leapfrog Group. Patients can review online reports for hospitals in their area to see how they “rank” for certain quality metrics. For example, if a pregnant woman in California wanted to determine which hospital to give birth in, she could go to calhospitalcompare.org to compare how hospitals near her perform on maternity-related metrics such as C-section or episiotomy to make an informed decision on where to seek her maternity care. However, if consumers like the women in California are not aware of or have never heard of such terminology, it is hard to use public reports to decide which hospitals have the best quality of care.

Quality terminology is used by multiple stakeholders, including patients, providers, hospitals, and payers. The article was really focused on patient comprehension of quality terminology and patient engagement with hospital quality information.

Jasmine Nicole: That is interesting. Your point about patient comprehension of quality terminology brings up an important point in ensuring we define literacy and health literacy. To level set with our listeners, health literacy is defined by the US Department of Health and Human Services (HHS), as “the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions”. And gaps in health literacy are a major public health issue. For example, back in 2004, the Institute of Medicine (IOM) reported that health literacy is critical to improving health of individuals in the nation. In 2006, the US Department of Education released the first national assessment of health literacy in English speaking adults. The report found that only 12% of English-speaking adults in the US have proficient health literacy, which means 9 out of 10 English speakers have comprehension issues for their own health. This prompted HHS in 2010 to release the National Action Plan to Improve Health Literacy. It outlined strategies and goals to pursue to meet Healthy People 2020 objectives. Courtney, can you speak to some of the impacts of low health literacy on healthcare decision making?

Courtney: As you mentioned, we know comprehension issues are common among groups with disparities, including low health literacy. I liken this to going to a restaurant in a country where you do not speak the language. You are handed a menu in another language and probably spend some time reading over it to try to understand what to order. You may even ask the waiter/waitress for help, but because you do not speak the same language, you may not get the answers you are looking for or find the exchange to be useful. You might order something that looks or sounds kind of familiar, recognizing a word or a root of a word. However, you may end up choosing something you would have never selected had you fully understood when you ordered. I find this to be a relatable analogy when describing some of the cultural and linguistic barriers to accessing healthcare information for patients with low health literacy or even patients who do not speak English as a first language.

The authors in the article noted that pregnant women typically know they will be hospitalized at the time of their delivery and have a strong interest in factors that will impact their birthing experience. However, women with low health literacy are less likely to feel they can have an impact on their birthing outcome, and instead rely on their healthcare provider to be in control of their outcomes.

Unfortunately, we know that this issue is not unique to obstetric care. For example, I do a lot of work with patients with cancer. We often hear from those patients that they felt extremely overwhelmed when they were first diagnosed, both by the diagnosis itself, but also the pressure to take in a lot of new information and terminology and make decisions quickly. Patients who may be less empowered to ask questions or express their preferences end up deferring to their provider to make early treatment-related decisions.

Jasmine Nicole: That is a great analogy, Courtney! You brought up important points. The article acknowledges that AAPI subgroups in the US have known disparities in healthcare quality and access but again it is limited and underrepresented, specifically as it relates to health literacy and women’s health. The article did assess comprehension of 10 common obstetric terms amongst AAPI women and researchers found that health disparities in obstetric trauma for some of these ethnic populations is more prevalent than others, making comprehension of this term relevant. For patients to make decisions on their health, they have to be able to effectively communicate with their physician and articulate their needs. From your perspective, what are the implications of gaps in comprehension on healthcare decision-making?

Courtney: As you mentioned, one of the main findings of the article was that for some of the quality terms, there was not just a lack of understanding, but a misunderstanding of the term. For example, with the term obstetric trauma, women perceived the term to be related to something akin to post-traumatic stress disorder or fear after giving birth. This finding has broader implications for treatment adherence and chronic-disease management. If patients do not fully understand or misunderstand terminology as they are making healthcare-related decisions, they cannot make fully informed decisions. This problem is referred to as the healthcare decision-making paradox, where there is this increased demand on patients to support healthcare-related decisions, but it is not accompanied by the appropriate information or understanding of information to make informed decisions.

In the context of healthcare quality reports, misunderstanding of health messages or quality terminology may render these reports to be not particularly useful or even harmful to the patient.

Jasmine Nicole: Thank you, Courtney. The authors do describe a need for improved communication between healthcare providers and patients to ensure understanding and equity in healthcare quality terminology engagement. This study is adding to the body of literature supporting the need for effective patient education and provider-patient communication. Courtney, what are some tools to solve the healthcare decision-making paradox and support patients who have limited health literacy?

Courtney: There is a lot of traditional patient education work being done to support improved health literacy. The authors note the use of web-based pregnancy applications that allow for personalization, monitoring, and frequent use by patients that look promising. To ensure these solutions are helpful, it is important that they be written at the appropriate literacy level. For example, the American Medical Association and National Institutes of Health recommend patient education materials be written at a 6^th grade or below reading level. The Joint Commission recommends a 5^th grade or below reading level. It is also important that those who are developing materials or applications understand health literacy and its importance.

Similarly, for hospital quality reports, there are opportunities to ensure that key quality terminology is defined at the appropriate literacy level within the quality report itself. A lot of these reports allow the patient or consumer to hover or click on the metrics, to read a description. For example, I looked at a report where I was able to click on the term “episiotomy” to see that it noted, “Episiotomies have been clearly linked with worse perineal tears, loss of bladder or bowel control, and pelvic floor defects.” Terms like “perineal tear” or “pelvic floor defects” are not defined in the report and may not be familiar to everyone reading them.

To help with the decision-making paradox, I mentioned before that I do a lot of work with cancer patients. We see very similar challenges in this population, with respect to patients having some understanding of what their treatment and disease management may look like, but frequently not having a full understanding of what their experience may be in the next 1-, 3-, 5 years as well as patients having challenges understanding the terminology to support decision making and navigate the various settings of care. Cancer patients we work with expressed a desire to have material that helps them to organize their thoughts shortly after diagnosis, understand what to expect in their care experience, and communicate their preferences with their oncologist.

To support this need, we applied a human-centered design approach to develop preparation for shared decision-making tools for both breast cancer and non-small cell lung cancer patients. Evidence strongly supports involving members of the target audience in the design and testing of communication products and is suggested as a method to improve health literacy in the National Health Literacy Action Plan.

The tools we finalized allow patients to communicate preferences around decision making with their oncologist ahead of making any treatment-related decisions. For example, some patients prefer to know everything there is to know, while others prefer the provider recommend a course of action. It is important for the patient to decide where they are on that spectrum to be able to appropriately communicate that with their healthcare provider. We have found that patients are very receptive and excited by the idea of a receiving a tool like this, shortly after diagnosis. Similarly, we find that oncology healthcare providers really want to have these types of discussions with their patients to help their patient to make the best decision for themselves.

When these communication barriers are broken down between the patient and provider and the provider has a better understanding of the patient as a person, there is tremendous opportunity for informed, equitable treatment-related decision making.

Jasmine Nicole: Wow! Thank you, Courtney. Thank you for joining me today. Your insights have been extremely valuable to our listeners. Thank you for tuning into Journal Club Review on Avalere Health Essential Voice. Please stay tuned for more episodes. If you would like to learn more, please visit us at our website www.avalere.com.