Patients’ experience to inform decision-making and clinical follow-up: The example of total hip arthroplasty

Background The aim of this project was to enable patients and clinicians to benefit from previous patients’ experiences with total hip arthroplasty (THA) by seeking out patients’ views on what is important for them, leveraging registry data, and providing outcome information that is perceived as relevant, understandable, adapted to a specific patient’s profile, and readily available. Methods We created the information tool “Patients like me” in four steps. (1) The knowledge basis was the systematically collected detailed exposure and outcome information from the Geneva Arthroplasty Registry established 1996. (2) From the registry we randomly selected 275 patients about to undergo or having already undergone THA and asked them via interviews and a survey which benefits and harms associated with the operation and daily life with the prosthesis they perceived as most important. (3) The identified relevant data (39 predictor candidates, 15 outcomes) were evaluated using Conditional Inference Trees analysis to construct a classification algorithm for each of the 15 outcomes at three different time points/periods. Internal validity of the results was tested using bootstrapping. (4) The tool was designed by and pre-tested with patients over several iterations. Results Data from 6836 primary elective THAs operated between 1996 and 2019 were included. The trajectories for the 15 outcomes from the domains pain relief, activity improvement, complication (infection, dislocation, peri-prosthetic fracture) and what to expect in the future (revision surgery, need for contralateral hip replacement) over up to 20 years after surgery were presented for all patients and for specific patient profiles. The tool was adapted to various purposes including individual use, group sessions, patient-clinician interaction and surgeon information to complement the preoperative planning. The pre-test patients’ feedback to the tool was unanimously positive. They considered it interesting, clear, complete, and complementary to other information received. Conclusion The tool basead on a survey of patients’ perceived concerns and interests and the corresponding long-term data from a large institutional registry makes past patients’ experience accessible, understandable, and visible for today’s patients and their clinicians. It is a comprehensive illustration of trajectories of relevant outcomes from previous “Patients like me”. This principle and methodology can be applied in other medical fields. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The study was funded by the Fondation privee des HUG, www.fondationhug.org/en. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethics approval for this project was given by the local ethics committee (Commission cantonale d ethique de la recherche de Geneve (CCER), n PB_2017-00164). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Availability of data and materials: The datasets generated and/or analysed during the current study are not publicly available due to local data protection rules, but de-identified data are available from the corresponding author on reasonable request and after permission from the local ethics committee.