Dataset Information

Incorporating patient-reported outcomes in total joint arthroplasty registries: challenges and opportunities.

ABSTRACT:

Background

Total joint arthroplasty (TJA) registries traditionally have focused on implant longevity and rates of revision surgery. Registries would benefit from the addition of standardized patient-reported outcomes (PROs) such as pain relief and improved physical function. However, PROs have not been routinely adopted, and their incorporation into TJA registries presents challenges.

Questions/purposes

We review current PRO use by existing national registries, challenges to integrating PROs in national registries, lessons from national registries that have integrated PROs, and suggestions to guide future adoption of PROs.

Methods

We conducted a literature search of papers addressing PRO use in national knee and hip arthroplasty registries, resulting in 15 articles. These publications were supplemented by discussions with thought leaders from international registries. WHERE ARE WE NOW?: Some national TJA registries are collecting PROs and valuable research is emerging. However, challenges exist, such as selecting suitable PROs, selection bias in countries without government-mandated participation for all hospitals, and challenges with missing data. WHERE DO WE NEED TO GO?: The ideal system will incorporate PROs into TJA registries. In so doing, it will be important to choose suitable PROs and develop innovative methods to collect PROs to ensure complete data and sustainability. HOW DO WE GET THERE?: New methods are required to meet the challenges related to registry design, logistics of PRO collection, and registry cost and sustainability. Modifications to the traditional hospital- and implant-centric design and new procedures to collect complete data from both patients and clinicians may be necessary. For instance, England and Wales, New Zealand, and Sweden developed methods to collect PROs after TJA directly from patients and a US TJA registry collects PROs as the primary outcome. Finally, to assure long-term sustainability, PRO data must be valuable to multiple stakeholders, including patients, clinicians, researchers, and policy makers.

SUBMITTER: Franklin PD

PROVIDER: S-EPMC3792256 | biostudies-literature | 2013 Nov

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Incorporating patient-reported outcomes in total joint arthroplasty registries: challenges and opportunities.

Franklin Patricia D PD Harrold Leslie L Ayers David C DC

Clinical orthopaedics and related research 20131101 11

<h4>Background</h4>Total joint arthroplasty (TJA) registries traditionally have focused on implant longevity and rates of revision surgery. Registries would benefit from the addition of standardized patient-reported outcomes (PROs) such as pain relief and improved physical function. However, PROs have not been routinely adopted, and their incorporation into TJA registries presents challenges.<h4>Questions/purposes</h4>We review current PRO use by existing national registries, challenges to integ ...[more]

PMID: 23897504

Similar Datasets

Project description:BackgroundDespite widely reported success associated with hip and knee replacements, some patients remain dissatisfied with their outcomes. Patient activation, an individual's propensity to engage in adaptive health behaviors, has been measured as a potentially important factor contributing to health outcomes, cost, and patient experience of care. However, to our knowledge, it has not been studied in patients undergoing total joint arthroplasties (TJAs).Questions/purposesWe wanted to determine whether patients with higher activation scores would experience (1) greater resolution of pain and improved activity, (2) greater improvements in postoperative physical and mental health, and (3) greater patient satisfaction after primary THA or TKA.MethodsWe approached 174 patients and enrolled 135 who were undergoing primary THA or TKA at one of two hospitals between January 2013 and May 2014. Patient Activation Measure (PAM) scores were obtained preoperatively and patient-reported outcomes were assessed and completed for 125 patients pre- and postoperatively at the 6- or 12-month visit. We assessed pain and activity with the Hip Disability and Osteoarthritis Outcome Score (HOOS), Knee Injury and Osteoarthritis Outcome Score (KOOS), and University of California Los Angeles (UCLA) activity scores. We measured physical and mental health by calculating SF12v2® scores and measured patient satisfaction with the Hip and Knee Satisfaction Scale (HKSS). Linear regression models were used to test the association between baseline PAM and postoperative patient-reported outcomes.ResultsOverall, patients with a higher baseline PAM score experienced better pain relief using the HOOS/KOOS pain scores (R2=0.311, p=0.048) and symptoms using the HOOS/KOOS symptom scores (R2=0.272, p=0.021). In addition, higher PAM scores were associated with better postoperative mental health using the SF12v2® (R2=0.057, p<0.001), but were not associated with higher physical health (R2=0.176, p=0.173). Finally, higher PAM scores were associated with having greater postoperative satisfaction after surgery using the HKSS questionnaire (R2=0.048, p=0.023).ConclusionsHigher preoperative patient activation was associated with better pain relief, decreased symptoms, improved mental health, and greater satisfaction after TJA. Future efforts should be aimed at studying if improving patient activation before surgery results in better patient-reported outcomes after elective THA or TKA.Level of evidenceLevel II, prognostic study.

Project description:BackgroundThere is an existing perception that obesity has a negative impact on complications following total knee arthroplasty (TKA). However, data on the impact of obesity levels on patient-reported outcomes (PROMs) is sparse. We investigated the association between different obesity classes with PROMs among patients who underwent TKA.MethodsWe performed retrospective secondary analyses on data extracted from the total joint replacement data repository (Alberta, Canada) managed by the Alberta Bone and Joint Health Institute (ABJHI). Patients had WOMAC and EQ5D scores measured at baseline in addition to 3 and/or 12 months following TKA. Patients were stratified according to the World Health Organization (WHO) classification, into five body mass index (BMI) groups of normal, overweight, BMI class I, BMI class II, and BMI class III. The association between BMI and mean changes in WOMAC subscales (pain, function, and stiffness) and EQ-5D-5L index over the time intervals of baseline to 3 months and 3 to 12 months following TKA was assessed. Linear mixed-effects models were used, and the models were adjusted for age, sex, length of surgery, comorbidities, year of surgery, and geographical zone where the surgery was performed.ResultsMean age was 65.5 years (SD = 8.7). Postoperatively, there was a significant improvement (p < 0.001) in WOMAC subscales of patient-reported pain, function, and stiffness, as well as EQ-5D-5L regardless of BMI group. Although, patients in BMI class II and class III reported significantly improved pain 3 months after TKA compared to those with normal BMI, all BMI groups attained similar level of pain reduction at 12 months after TKA. The greatest improvement in all WOMAC subscales, as well as EQ5D index, occurred between baseline and 3 months (adjusted p < 0.0001).ConclusionThe findings indicate that patients reported improved pain, function, and stiffness across all BMI groups following TKA. Patients with BMI classified as obese reported similar benefits to those with BMI classified as normal weight. These results may help health care providers to discuss expectations regarding the TKA recovery in terms of pain, function, and quality of life improvements with their TKA candidates.

Project description:Patient-reported outcomes (PROs) are an important tool to assess the impact of a new therapy on symptom burden and health-related quality of life (HRQoL). Chimeric antigen receptor T (CAR-T) cell therapies have been approved for use in relapsed or refractory leukemia and lymphoma based on promising efficacy in clinical trials. However, data are lacking on patient-reported toxicity and impact on HRQoL. This review provides an overview of the incorporation of PROs in CAR-T cell therapy and the specific challenges in this context. The first step is to demonstrate feasibility of PRO monitoring in the acute phase after CAR-T cell infusion. Apart from core PRO domains like physical functioning, disease-related symptoms, and symptomatic adverse effects, important measures to consider are cognitive functioning and financial toxicity. Because there are no validated PRO instruments in the setting of CAR-T cell therapy, universally validated measures like Patient-Reported Outcomes Measurement Information System (PROMIS) could be considered, which is also recommended in the setting of hematopoietic stem cell transplantation. Given the timeline of toxicities with CAR-T cell therapy, PRO instruments should be administered at baseline and at least weekly in the first 30 days. Subsequently, frequent monitoring of PROs in the first year might be helpful in identifying short- and intermediate-term toxicities, functional limitations, and neuropsychiatric effects. The major potential challenge in acute phase would be missing data when patients develop severe cytokine release syndrome or neurotoxicity. Designing a strategy for handling missing data is crucial. The long-term safety of CAR-T cell therapy is not well characterized because of short follow-up in most studies reported thus far. PROs should be measured at least yearly after the first year to identify potential late effects like cognitive deficit or autoimmune manifestations. Collaboration between institutions performing cellular therapy and engagement with patients, clinicians, and statisticians with expertise in PROs are crucial for setting a comprehensive agenda on integration of PROs with CAR-T cell therapy.

Dataset Information

Incorporating patient-reported outcomes in total joint arthroplasty registries: challenges and opportunities.

Background

Questions/purposes

Methods

Publications

Incorporating patient-reported outcomes in total joint arthroplasty registries: challenges and opportunities.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets