Benjamin Nowell, director of patient-centred research at the Global Healthy Living Foundation (GHLF), CreakyJoints® and principal investigator of ArthritisPower™ Patient-Powered Research Network with Shilpa Venkatachalam (GHLF), and Jeffrey Curtis, (University of Alabama at Birmingham). Ben leads all research activities conducted by the organisation, including facilitating studies conducted with academic and industry partners. His research interests include examination of the factors that facilitate patient engagement and adherence to providing digital health measures, use of wearable devices in the measurement of disease activity, and patient-reported outcomes and shared decision making in rheumatologic and musculoskeletal conditions.
Q: You recently published your study looking at patient information regarding total knee arthroplasty surgery. Could you tell us more about the study and its results?
Data show that by 2030 there may be nearly 2 million total knee arthroplasty (TKA) procedures performed each year in the United States (US). However, despite the positive outcomes and low complication rates of TKA overall, it is estimated that one fifth or more of TKA patients are dissatisfied with the outcome of the procedure. These patients express their unfulfilled expectations of the procedure and give poor quality-of-life ratings that are related to function and pain.
Our newly published ArthritisPower study in Journal of Comparative Effectiveness Research finds that surveyed osteoarthritis patients in the US did not feel they have enough information to contribute to the decisions that are important to them about their total knee arthroplasty (TKA), namely, choice of surgeon, device type, surgical approach, facility, and timing.
Participants understood that choosing a surgeon may dictate other decisions, such as surgical approach, implant device and the surgical site. And while participants acknowledged their lack of clinical expertise to choose the surgical approach and device themselves, they nevertheless expressed concern about these decisions, ranking them second and third in importance after choice of surgeon. Moreover, surgical approach and device are the decisions about which patients have the least information prior to surgery, including how their surgeon and hospital system make such decisions.
While this needs additional study, we concluded that it is important to equip osteoarthritis patients with better shared-decision making tools to facilitate patient-centred, collaborative conversations with their providers about TKA decisions.
Additional study design and results:
- Members of CreakyJoints ArthritisPower Research Registry were recruited to participate in focus groups related to joint replacement (n=49)
- Data from the focus groups were used to develop an online survey about decision making and information needs related to TKA, and members of CreakyJoints and ArthritisPower were recruited to take the survey (n=574)
- Respondents were asked to rank the decisions that were most important in advancing their TKA decision. Results showed that choice of surgeon was most important, followed by choice of device and approach. The facility and timing of surgery were ranked fourth and fifth. However, the differences in weighted summary scores for device, approach, facility, and timing were not large, suggesting these choices may be more or less equally important to patients.
- About half of respondents agreed or strongly agreed that they had enough information to help them make a decision about where (facility) to have surgery (56%), which surgeon to choose (50%), and when to have surgery (47%). But choice of device and surgical approach stood out as decisions for which very few respondents agreed they had enough information, at 12 and 14%, respectively.
Q: What could this mean for the patient experience, management strategies and outcomes looking forward?
This is the first study we are aware of to identify the decisions US patients make about TKA, aside from whether or not to actually have a full knee replacement, and the first study to assess patient information needs related to those decisions.
We recruited participants from ArthritisPower because patients or their designated advocates can best describe how they make decisions about TKA. We believe that the next step is for health systems, payors, and providers to improve how they share information about the decisions that patients in the study identified. An exchange of information between TKA candidates and their providers can create a positive feedback loop between parties and their providers and may help build trusting relationships, which was also identified as a key factor in patients’ decision making.
When patients feel supported by their health care team, they may be more likely to share their perceptions of the TKA experience by contributing to future patient-reported outcomes data and, on a more personal level, with their patient peers. For example, we observed in our focus groups that included both individuals considering TKA and those who had already undergone the procedure, that participants were keen to share information or advice with each other.
This study also suggests there are steps that can be taken by a range of stakeholders to support increased patient engagement and shared decision making for TKA. Beyond encouraging better dialogue between patients, clinicians and health care systems, there is a need to curate information and develop decision aids that are accessible to patients. For example, CreakyJoints created the Raising the Voice of the Patient guides, adapting clinical guidelines into ‘patient guidelines’ that describe treatment options and give evidence-based recommendations. Prior research suggests that preoperative patient education may reduce anxiety, help establish realistic expectations and improve joint replacement outcomes.
Health providers and stakeholders can organise educational activities and develop educational materials around these major decisions, and many already do. When patients feel heard by their care providers it can help them to make decisions and reduce concerns.
Q: What’s the next step in your research?
Further research is needed to determine what information and formats will be most useful to patients to support them in shared decision making about TKA.
In addition, it’s important to us at CreakyJoints that findings from rheumatic and musculoskeletal disease research get disseminated back to study participants and our arthritis community at large. Sharing our key learnings helps raise awareness in the public and among those living with arthritis so that they can make better informed health decisions. In addition, engaging patients in ongoing device and outcomes monitoring following joint replacement may be a powerful method for generating information to guide patients and other health care stakeholders to make decisions in the future.