Measuring What Matters: A Qualitative Study of the Relevance and Clinical Utility of PROMIS Surveys in Systemic Lupus Erythematosus

RESULTS

Four focus groups with 28 female patients and 1-on-1 interviews with 4 male patients were conducted between January and March of 2017. Participants exhibited diverse characteristics in regard to race and ethnicity, insurance type, educational attainment, and disease duration (Table 1). Participants’ PROMIS CAT scores averaged a half SD worse than the general population mean of 50 across domains (Table 1).

Relevance of PROMIS. Participants rated the selected PROMIS domains as highly relevant to their experience of SLE in surveys prior to focus groups and interviews (Figure 1). During focus group discussions, several noted that the surveys were “comprehensive” and “covered everything.” One participant explained that the domains encapsulated a lot of what patients go through and “would help gauge what a person who’s dealing with lupus has to deal with.” Several participants commented on the relevance of the social and emotional domains in particular: “some of us live 100% normal lives with the pain—it’s that other stuff—the mental stuff that kind of makes it tough. So, I think it’s important to make sure questions address that.”

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Figure 1.

Ratings of the relevance of PROMIS domains by patients with SLE. PROMIS: Patient-Reported Outcomes Measurement Information System; SLE: systemic lupus erythematosus.

When asked to rate their top 5 HRQOL domains during focus groups and interviews, participants rated fatigue, pain interference, sleep disturbance, physical function, and applied cognition abilities as most important, with fatigue most frequently listed (Figure 2). Among the 4 male participants, 3 (75%) listed anxiety in their top 5 and commented on the importance of the surveys querying mental health: “lupus patients most normally see a rheumatologist and then various different specialties depending on their organ involvement, but sometimes things like anger, anxiety, and depression aren’t talked about as often or as deeply. I think the questionnaire having these specific categories can at least help bring to the doctor’s attention that a patient might be feeling depressed or is dealing with a lot of anxiety.”

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Figure 2.

Top 5 health-related quality of life domains of participants (N = 32). PROMIS: Patient-Reported Outcomes Measurement Information System.

When queried, patients identified several significant areas of HRQOL that were not addressed by the selected PROMIS CATs. These included issues related to body image, medication side effects, intimate relationships, and pregnancy. These domains were listed in the top 5 most important areas of HRQOL by 3 (9%) participants or fewer (Figure 2).

Although participants endorsed the overall relevance of PROMIS domains, many recommended an option to allow respondents to customize the surveys to include the domains of most importance. Some also suggested that the individual questions did not always capture the nuance and heterogeneity of the experience of patients with SLE. For example, many suggested that the pain domains—pain interference and pain behavior—would benefit from a “not applicable” option and the inclusion of questions related to the fluctuation of symptoms with the weather and seasons. Some participants found the 7-day recall of PROMIS questions was not adequate to capture the breadth of symptoms experienced, particularly as it was too short a time frame to accurately attribute symptoms to SLE or other factors. Several patients recommended the addition of a free text box to enable respondents to prioritize and contextualize their symptoms. They suggested that current treatment, flare status, comorbidities, and external stressors were important to comment on to explain their multiple choice responses.

A recurring theme in the focus groups was the challenge patients faced in determining the etiology of their symptoms. They expressed difficulty attributing their symptoms to SLE or other factors, particularly with regard to pain, anxiety, and depression: “Is it in the moment that you’re feeling that way? Or, is it the illness that [makes] you feel that way? Is it something that [you’re] upset about or you had—or something that happened during the day?” Participants suggested that personality, comorbid conditions including pregnancy, and external factors like stress, sleep, and caretaking responsibilities could cloud the picture: “It’s a symptom fog. What exactly am I going through? What’s wrong? Is it this? Is it that? Am I having my period? Am I going through menopause? Am I tired from my kids? Am I tired from work?” Considering the ambiguity in the origin of their symptoms, 18 (56%) participants reported that they answered the PROMIS surveys considering both SLE and their general health, and 22 (69%) reported that their responses would not have changed if the survey had explicitly referenced their SLE.

Clinical utility of PROMIS. Participants overall strongly endorsed using PROMIS surveys in their medical care, describing them as “straightforward,” “easy,” and “self-explanatory.” One patient with significant arthritis of the hands noted, “[PROMIS CATs] were easier than other surveys because we just had to press for our answers versus writing.” Twenty-two (69%) participants reported they wished to use PROMIS in their routine medical care when polled during focus groups and interviews. They cited several potential benefits of the surveys that centered on 3 major themes: disease monitoring and management, communication, and patient empowerment (Table 2).

Disease monitoring and management. Participants explained that they would like to use PROMIS scores to track their symptoms and monitor disease progression over the long term. They suggested that tracking symptoms would be beneficial for both patients and providers, so “that you both can work on how to get you back to a good level.” They also noted that normative results that compared their scores to others with SLE or the general population could be useful to contextualize their illness. Participants outlined how PROMIS scores could contribute to the physician’s clinical impression by incorporating the patient’s perspective and offering an objective metric to evaluate their illness in addition to the traditional physical exam and laboratory data. They suggested these data could help guide therapeutic decisions, including medication management and referrals. Additionally, some participants mentioned that PROMIS results could help them self-monitor their symptoms and determine areas for improvement.

Communication. Patients suggested that PROMIS surveys could promote communication in multiple ways. Responding to PROMIS questions helped some participants convey aspects of their HRQOL that were difficult to articulate and served as a reminder of symptoms they often forgot when they arrived at the doctor’s office. They noted that the surveys relayed each individual’s personal experience with SLE and that reviewing PROMIS results during visits could guide conversations toward patient concerns and priorities, including “nonphysical things” such as emotional health. Some stated that they would like to complete surveys in between visits and be contacted if their results were of concern, suggesting that the surveys could serve as tools for asynchronous communication with their providers and promote continuity of care. Participants also felt that PROMIS results, if accessible to specialists across a health system, could help streamline multidisciplinary care and reduce redundancy. Last, some proposed that PROMIS results could be used to educate family members and friends about their disease. Citing the concrete nature of the numeric scores, patients felt the surveys could legitimize their symptoms to those unfamiliar with SLE.

Patient empowerment. Patients suggested PROMIS surveys could be empowering because they encouraged self-reflection and promoted self-awareness and validation of illness. The questions prompted participants to sincerely reflect on their health, and at times compelled them to confront denial about their symptoms. For many participants, the surveys brought clarity by naming symptoms “put to the back of the mind” and validation through the realization that they were not alone in their experience.

Although many participants found inherent value in completing the surveys, several emphasized the necessity of physicians reviewing results. One woman observed, “if they’re not going to dig in my lifestyle and how I deal with my lupus, then why bother?” while another noted, “if the doctor is actually going to take the time to actually look at what you filled out, then yeah…[if] you’re not even paying attention to the survey, then what was my point of filling it out?” A few patients did not feel the surveys would be of added value even if reviewed by their doctors. As 1 participant stated, “I have a very good relationship with my doctor. So, I don’t need the survey.” Another elaborated, “I guess it depends on what kind of relationship you have with the doctor …[mine] goes out of his way. He’ll call me. He’ll ask me those questions.”