ATTR-CM Perception Shifts Reflect Complexity: Martha Stutsky, PharmD

Patients with transthyretin amyloid cardiomyopathy (ATTR-CM) whose perception of their therapy shifted in both directions had more pharmacist touchpoints than those whose perception never changed, a pattern driven by patient complexity and the interventions it prompts, said Martha Stutsky, PharmD, BCPS, director of clinical outcomes, Shields Health Solutions, in a written interview with The American Journal of Managed Care^® (AJMC^®).

The descriptive study, presented at the National Association of Specialty Pharmacy (NASP) inSPire2026 meeting, tracked a single patient perception question that pharmacy liaisons ask during routine refill calls. Most patients (74%) reported no change in perception over the study period.¹ Stutsky discussed why survivorship bias can't be ruled out among patients who reported changes in both directions, how "poor" and "very poor" responses already prompt a liaison-pharmacist conversation and potential pharmacist assessment, and where validation work could go next.

The findings come as ATTR-CM incidence and prevalence rose sharply in the US between 2010 and 2023, with newly diagnosed patients presenting with a growing burden of comorbid conditions.²

This interview was edited for clarity.

AJMC: Patients with both increase and decrease change events had markedly more pharmacist touchpoints than those who never changed (7.4 vs 5.9).¹ Do you think the touchpoints are driving the perception shifts, or do more symptomatic or complex patients naturally generate both more touchpoints and more perception volatility?

Stutsky: I do believe that the number of change events is a function of the complexity and subsequent interventions, because those are the only patient touchpoints that are variable. Initial assessments and follow-ups are consistent across all patients, while interventions would be what changes the most for complex patients. This observation is consistent with the intent of our clinical care model, in which patients with greater support needs may generate additional pharmacist interactions.

AJMC: The "both" group also had by far the longest duration on therapy (878 days vs 603 overall). Could that simply be a survivorship effect, where patients on therapy longer have more opportunities to report a change either way?

Stutsky: It is definitely part of the effect, which is why the "decrease only" and "increase only" groups are comparatively small. As soon as patients experience both directions of change, they become part of the "both" group. The longer patients are on therapy, the more likely they are to be in the "both" group, which is why we are careful not to make any causal or even correlative claims based on these data.

In this descriptive study, we can't eliminate the possibility of survivorship bias, so this is a point of further investigation to truly test whether the longer duration results from our more frequent touchpoints and better patient management or [is] simply a result of being on therapy longer. However, an examination of all the results reveals a nuanced picture [suggesting] that the duration of therapy may be from the interventions.

If we compare the "no change," "decrease only," and "increase only" groups, we see that the number of touchpoints is approximately the same. The "increase only" group, however, has a longer time between touchpoints, as expected based on the patient perception change (ie, there is no signal to initiate more frequent touchpoints). Furthermore, we see that the duration of therapy is also approximately the same between these groups and even slightly lower.

Closer analysis of the relationship between touchpoint volume and duration of therapy is one avenue of future investigation, in addition to more robust statistical analysis to reduce confounders.

AJMC: The perception measure is a nonvalidated, single-item question asked by pharmacy liaisons. What led you to that approach, and are there plans to validate it or adopt a more formal patient-reported outcome (PRO) instrument?

Stutsky: Our nonvalidated patient perception score was developed as a way to measure patient-reported experience efficiently and routinely for all specialty medications that are managed. Since pharmacy liaisons have the most frequent touchpoints with patients, assessment with routine refill calls allows for trending of data over time.

We have an opportunity to pursue validation studies, not necessarily of the question, but more in terms of the relevant benchmarks. For example, does a change in score of 4 to 5 impact outcomes? Where is that signal, and can we capture it? We can potentially correlate how scores of our nonvalidated question compare to other validated patient-reported outcomes that we collect as well. Additionally, since all patients are assessed using the same measure, there is an opportunity to expand the analysis across other therapeutic areas.

AJMC: Despite ATTR-CM being a progressive disease, 74% of patients reported no change in perception. Is that reassuring from an adherence standpoint, or does it raise concern that patients, or the instrument, aren't picking up on disease progression?

Stutsky: Yes, I believe that this is the baseline and primary benefit of our high-touch model. Our findings are built on the foundation of high medication adherence and achievement of the expected results of the treatment. As a result, our research is typically focused on patients who might have experienced barriers to optimal outcomes despite taking the medication consistently. Our single-question instrument is not validated or intended to capture more subtle changes or the full patient care picture. This analysis provides initial insights as to how patient perception measures can be used to inform pharmacist engagement.

AJMC: How do you envision this perception data being operationalized? Would a "decrease" flag ever trigger an automatic clinical or pharmacist intervention in real time, rather than just being captured retrospectively?

Stutsky: As part of our care model, we have already integrated responses to patient perception data into the clinical workflow. Responses of "poor" and "very poor" trigger a conversation with the liaison and pharmacist, and subsequently a potential pharmacist assessment, which explains the trends we observed. Broadly speaking, patients with more complex scenarios are likely to have more pharmacist touchpoints.

References

1. Stutsky M, Luder H, Napolitano T, Chun YC. Patient perception of treatment experience observed during routine specialty pharmacy interactions for ATTR-CM. Poster presented at: NASP inSPire2026; September 22-25, 2026; National Harbor, MD.
2. Steinzor P. ATTR-CM incidence, prevalence rose sharply in the US. AJMC. June 23, 2026. Accessed October 7, 2026. https://www.ajmc.com/view/attr-cm-incidence-prevalence-rose-sharply-in-the-us