Beyond the Numbers

Modern healthcare is undergoing a significant transformation towards patient-centred care, redefining the delivery of medical services by prioritising the patient’s voice in every clinical decision. Patient-reported outcome measures (PROMs) play a key role—simple and standardised questionnaires that give patients the chance to share how they really feel about a given treatment, in their own words. PROMs help specialists understand what truly matters to each person, linking medical care more closely to real-life experiences.

Ophthalmology is not an exception: patients’ direct and subjective evaluations have been recognised as an essential part of the overall assessment of ophthalmic care, with some consolidated tools in place for quite some time, especially for cataract surgery.

Initially a powerful tool in research, PROMs now feature more often in day-to-day care, and there is hope that they could be increasingly integrated into the clinical workflow as an important part of the patient journey in ophthalmic care. Additionally, all the data gathered and filed could be useful to evaluate future surgical techniques or medical treatments.

Yet challenges are always just around the corner, and this integration will not be an easy task for those who advocate a more patient-centred approach—even if technologies may help in overcoming problems and difficulties.

A consolidated but recent history

In ophthalmology, cataract surgery was the first field where PROMs began to make an impact because they give patients rather predictable outcomes, Anders Behndig MD, PhD recalled. His country, Sweden, began using PROMs in cataract surgery in the 1990s thanks to the efforts of Professor Mats Lundström, who designed the first Catquest—a questionnaire with four alternative answers per question. Each one of them has a score, evaluated using Rasch analysis, a psychometric model designed to analyse categorical data, to ensure all the data gathered can be statistically analysed.

PROMs use in cataract surgery later expanded to all of Europe when ESCRS developed the European Registry of Quality Outcomes for Cataract and Refractive Surgery (EUREQUO) in 2007 to benchmark surgical outcomes, and Prof Lundström and Konrad Pesudovs met to design Catquest-9SF. This iteration is a set of nine questions and is used for cataract patients in EUREQUO. “Although it is quite an old form, it is still considered state of the art and has been demonstrated to be stable over time,” Prof Behndig reported. The goal is to assess patients’ preoperative and postoperative subjective experiences and outcomes, which can be a real asset.

What PROMs has taught us so far

The strength of PROMs derives from their broad yet comprehensive approach to medicine, considering all aspects of patients’ humanity. “It is a biopsychosocial model of healthcare, which considers the human being much more than just physical parts. PROMs help patients to ultimately dictate what they think is important to their own healthcare,” Yarrow Scantling-Birch MD stated. This kind of 360-degree perspective has proven to give ophthalmologists an additional tool to further improve surgical and treatment outcomes for their patients.

Since their introduction, the ophthalmic community has learned some lessons from PROMs. According to Prof Behndig, PROMs results generally align rather well with results achieved using the usual measurement values (e.g., visual acuity). However, this is not always the case. “Patients’ satisfaction is not always consistent with clinical metrics. For instance, a patient with 20/20 vision may still experience dissatisfaction due to dysphotopsia or trouble with near vision,” Burkhard Dick MD, PhD confirmed. For example, PROMs highlighted the importance of patients’ preoperative expectations, which are sometimes unrealistic, and the discomfort posed by some visual phenomena, such as halos and glares.

Moreover, as Prof Behndig pointed out, PROMs in Sweden have provided insight into the timing of cataract surgeries, revealing that these procedures are now performed earlier than they were 10 to 20 years ago, offering patients different perceptions of improvement and helping surgeons better understand the optimal timing for surgery. Prof Dick noted PROMs data made it possible to benchmark across clinics and enhance patient communication regarding likely outcomes, thereby assisting in diagnosing different cases, from those with minimal visual impairment to those with comorbidities, who are more likely to be dissatisfied with the surgery.

The need for a more integrated approach

Although they have gained popularity over time, PROMs are still not fully used in clinical practice, despite the goal for integration into the clinical workflow, especially in a public context, according to Dr Scantling-Birch. In public healthcare settings, the volume of surgeries is often so high that it becomes difficult to fully capture each patient’s needs. PROMs can help streamline this process by using standardised questionnaires to gather important patient feedback.

PROMs’ potential is especially high when it comes to identifying patients who may have suboptimal outcomes in ophthalmic surgery. Prof Dick added they serve as a highly effective instrument to aid clinical decision-making for specialists, such as selecting the best IOL according to the patient’s need. In fact, surgeons can use aggregated PROMs data from platforms to counsel their patients on expected satisfaction rates. According to Prof Behndig, this becomes especially effective when the subjective data gathered through PROMs are combined with gathered objective clinical information—helping doctors gain the most complete picture of a patient’s condition and expected outcomes.

PROMs could also aid in assessing the entire patient pathway, from referral to postoperative assessment, as demonstrated in a study presented at the ESCRS Winter Meeting in Athens by Dr Scantling-Birch. This would allow surgeons to have a more comprehensive understanding of patients’ journeys and evaluate their feedback.

What could lead to an increasing integration of PROMs in clinical practice is the use of new technologies and digitalisation, which can help process the data more quickly and compare it with previous assessments.

Identifying the challenges ahead

Using PROMs comes with its own set of problems and challenges. First, PROMs questionnaires need to be unidimensional, not merging all the symptoms and issues. They must be meticulous and avoid repetitive questions that could lead to the same answer.

PROMs need to be clear and comprehensible, especially for elderly people or non-native speakers of a certain language. The digital integration of PROMs could also lead to some difficulties for those who are not particularly tech savvy. Such challenges pose a risk of low response rates from patients or of answers being influenced by other factors—such as mood, personal character, expectations, socioeconomic disadvantages, or unrelated health issues.

Additional complications arise from misinterpreting the data or from how PROMs questionnaires are distributed and processed. As Prof Behndig highlighted, even a well-established tool such as Catquest-9SF has some gaps, as it does not consider spectacle independence, uncorrected near or intermediate vision, and optical phenomena associated with some types of IOLs, like multifocal lenses.

Hopes for the future

Overall, the hope for the future is that PROMs will be increasingly used in everyday ophthalmic practice, even beyond cataract surgery and ophthalmic surgery in general.

“What the patient thinks and feels is really what should matter most in healthcare, at least when it comes to visual impairment,” Prof Behndig said. “I hope that we will be able to work out some nice PROMs also for spectacle independence, uncorrected visual acuity, or symptoms not directly related to cataract.”

Building on this vision, PROMs data could guide more reimbursement, IOL selection, and surgical planning. “Their predictive power could be enhanced through AI-based analytics,” Prof Dick suggested, adding this brings the world of medicine even closer to its patients. “PROMs will help ophthalmologists deliver care that aligns closely with what patients value most: real-world visual function and quality of life.”

AI, machine learning, and digitalisation can further streamline a future of PROMs by potentially reducing the burden or limitations of filling out traditional checkbox questionnaires—within the boundaries of proper regulations and ethical approvals, of course. “Maybe it is controversial, but I see the future as not having PROMs but [a] software able to record and transcribe our consultations with patients, read the way they talk, or the tone of their voices, their mood, how they interact with the space, and integrate these data with the biological markers we collected,” Dr Scantling-Birch argued. “I imagine the future potentially all integrated electronically as part of our workflow.”

Anders Behndig MD, PhD is the co-chair of EUREQUO, former Head of the Swedish National Cataract Register and Swedish Ophthalmological Society, and Professor at Umeå University Hospital, Sweden. anders.behndig@umu.se

H Burkhard Dick MD, PhD, FEBOS-CR is professor and chairman of the Ruhr University Eye Hospital in Bochum, Germany, and ESCRS president elect. dickburkhard@aol.com

Yarrow Scantling-Birch MD is an ophthalmologist trainee at Moorfields Eye Hospital, London, UK. yarrow.scantling-birch@nhs.net