Patients scheduled for or having recently had knee or hip replacement surgery clearly identified personal outcomes they want from their surgery that are important and meaningful to them. While some of these outcomes, such as physical functioning and pain relief, align with items within various PROM measures, there were a variety of other outcomes identified that are not usually included in PROMs for orthopedic care, such as specific aspects of returning to an active lifestyle or engaging in specific leisure activities. Without knowing those specifics, it will be difficult for care teams to formulate postoperative programs to achieve them (e.g., rehabilitation needed for hiking versus playing soccer). Patients also indicated they preferred a personal outcome that they identified to track progress in their care rather than an overall PROM score and thought it very important their surgeon know their desired personal outcomes. The majority of patients also clearly indicated a desire to engage in shared decision-making about their post-surgical care and treatment, with patients identifying personal factors about their lives that could affect their care, such as living alone, and caring for pets—which may not always be discussed in the context of aftercare planning. Complementing the use of PROMs scores with the addition of assessing the attainment of a personal outcome chosen by the patient could add value to PROMs in clinical care, encouraging patients to reflect on what they want from their surgery and facilitating more robust patient communication and involvement in shared decision-making especially for post-operative care and treatment. This may also increase patient satisfaction with care and its outcomes.
Personal outcomes identified by patients are by nature unique and tailored to an individual patient’s life and perspective. Standard outcomes assumed important to patients such as pain relief or walking without pain/discomfort may be a patient’s desired outcome, but these patients also seemed to think of outcomes in relation to a specific activity of daily life, or a specific sport or leisure activity that is meaningful and important to them. While these activities may indeed require improvement in pain or functional status, those symptoms may not necessarily be the primary focus of the patient. The use of PROMs in clinical care was not designed to identify or track patient desired outcomes, but rather focus on assessing or tracking symptoms, severity, and functional status, factors which are modifiable in a clinical context. While a patient’s personal outcomes, such as returning to an active lifestyle or re-engaging in specific sport or leisure activity, may not appear to have a clear clinical context, clarifying how these activities relate to outcomes that can be addressed in a clinical context, such as pain relief, symptom severity and functional status, could help patients more clearly understand the relationship of PROMs to their own personal outcomes, tying them more clearly together.
While there has been research in orthopedics on what patients expect or prefer in their care, expectations and preferences for overall care hold differing meaning than what patients desire as outcomes from surgical care. Wright et al. for instance developed the Knee Patient Specific Index (KPSI), a PROM designed to provide more individualized measurement of the type, severity, and importance of patient complaints in orthopedic care [19, 22]. This PROM however, like many other highly regarded PROMs for orthopedics, is based on a volume of questions, 22 in this case, that form a summary numbered score. It takes time and effort to complete, and the resulting score may not be understood well by the patient. Patient preferences for personal outcomes could be the result of a lack of knowledge on how to use and interpret PROMs in the context of their personal goals and outcomes from surgery. There is currently little education for patients about the purpose and use of PROMs. In the qualitative study this research was based on, patients who were interviewed about PROMs frequently did not remember receiving their scores or thought the score was for the surgeon’s use, not theirs with many stating that they did not understand what the PROMs score meant [18]. This may be why most patients in this study identified their personal outcomes as more useful and important to them than PROMs scores and wanted their surgeons to know about those outcomes and use them for assessing progress in their care. For a PROM score to be useful and meaningful to patients they would need to understand what the score reflects about their functioning and its meaning in relation to their desired care outcome. This would entail much more robust communication and education on PROMs, including how they are used in clinical decision-making. Field and colleagues [23] in addressing the use of PROMs in clinical care, note that PROMs can be a tool for facilitating and enhancing communication and decision-making, benefiting the patient–clinician encounter and helping manage patient expectations for their care. Adding a personalized outcome in addition to PROMs could facilitate this communication even more, engaging the patient in their desired outcome while explaining and weaving in their PROMs score and how it relates to their desired outcome. It may also encourage PROM completion by patients, currently a challenging endeavor in most health systems [9, 24].
Post-surgical care is also an area important in patient care and communication. Here patients in the survey listed many factors that they perceived as important to their aftercare. While some of these factors would likely be discussed, there are others that are unique to a individuals life situation, such as living alone or caring for other people or pets, that may not arise in aftercare planning discussions. Care for companion animals for example, a growing phenomenon in U.S. households, is particularly unlikely to come up in a clinical discussion [25]. Facilitating communication that addresses the unique factors in a patient’s life is important to successful after-care. Fortunately, the majority of these patients wanted to be involved in shared decision-making for their care following surgery, providing an opportunity for robust discussion about the unique contextual factors in their lives that could affect their aftercare and treatment.
There are limitations to the current study. The survey response rate of 56% has potential for selection bias and respondents also showed higher levels of education than the general population. The study was also conducted at a single site and the narrow patient diversity and lack of longitudinal data limit generalizability. Patients in this study were also familiar with filling out PROMs for their care, a concept that has yet to have wide-spread use across health care. The study also has strengths however, building as it did upon initial interviews with patients and thus assuring their voice was well-represented in survey development and spoke to what was meaningful to them. We also note the study had patient engagement and representation from study design through completion, including a patient-investigator [CN] on the study team to bring this important perspective to the conduct of the research. The study also involved patients at different time points in the surgical trajectory, that began prior to and extended to one-year post-surgery, exploring varying perceptions at different timepoints among patients.