Despite differences in the structure of health care delivery systems, health care spending continues to outpace gross domestic product (GDP) and average wage globally. This highlights the stark... Show moreDespite differences in the structure of health care delivery systems, health care spending continues to outpace gross domestic product (GDP) and average wage globally. This highlights the stark reality that health systems today are – in many cases – financially unsustainable. Further, most health care services today are paid for via a fee-for-service or payment for each service provided mechanism, which does not ensure a focus on optimal health outcomes for patients; this includes clinical outcomes most important to them, such as function, pain, andquality of life. As such, bold reforms are needed to better align incentives to “bend” the cost curve and to ensure high-quality health care and the best possible patient outcomes. This dissertation includes scientific studies that highlight how the core principles of value-based health care, which focuses on maximizing the outcomes achieved per dollar spent, may be able to begin to address some of the issues plaguing our strained health care delivery systems globally, including within orthopaedic surgery. Show less
Purpose: Although the use of Patient-Reported Outcomes Measurement Information System (PROMIS) measures is widely advocated, little is known on their use in patients with inflammatory arthritis. We... Show morePurpose: Although the use of Patient-Reported Outcomes Measurement Information System (PROMIS) measures is widely advocated, little is known on their use in patients with inflammatory arthritis. We systematically describe the use and outcomes of PROMIS measures in clinical studies involving people with rheumatoid arthritis (RA) or axial spondyloarthritis (axSpA). Methods: A systematic review was conducted according to the PRISMA guidelines. Through a systematic search of nine electronic databases, clinical studies including patients with RA or axSpA and reporting the use of PROMIS measure were selected. Study characteristics, details of PROMIS measures and their outcomes, if available, were extracted. Results: In total, 29 studies described in 40 articles met the inclusion criteria, of which 25 studies included RA patients, three studies included axSpA patients and one study included both RA and axSpA patients. The use of two general PROMIS measures (PROMIS Global Health, PROMIS-29) and 13 different domain-specific PROMIS measures was reported, of which the PROMIS Pain Interference (n = 17), Physical Function (n = 14), Fatigue (n = 13), and Depression (n = 12) measures were most frequently used. Twenty-one studies reported their results in terms of T-scores. Most T-scores were worse than the general population mean, indicating impairments of health status. Eight studies did not report actual data but rather measurement properties of the PROMIS measures. Conclusion: There was considerable variety regarding the different PROMIS measures used, with the PROMIS Pain interference, Physical function, Fatigue, and Depression measures being the most frequently used. In order to facilitate the comparisons across studies, more standardization of the selection of PROMIS measures is needed. Show less
Background: Patient-reported outcome measures (PROMs) can help predict clinical outcomes and improve shared clinical decision-making discussions. There remains a paucity of research assessing how... Show moreBackground: Patient-reported outcome measures (PROMs) can help predict clinical outcomes and improve shared clinical decision-making discussions. There remains a paucity of research assessing how the use of PROMs may drive improved patient experience and patient activation. Methods: New foot and ankle patients completed PROMIS physical function (PF), pain interference (PI), and depression assessments. Patients were then randomized to viewing and discussing their PROMIS scores with their surgeon or not. Following the clinic visit, patients completed a series of Clinician & Group Survey-Consumer Assessment of Healthcare Providers and Systems (CG-CAHPS) questions and the Patient Activation Measure (PAM). Responses to the CG-CAHPS questions and PAM were compared between the 2 groups and after clustering on surgeon. Potential interaction effects by social deprivation were also explored. Results: After enrolling patients but removing those lost to follow-up or with missing data, 97 and 116 patients remained in the intervention control cohorts, respectively. No difference was found in CG-CAHPS responses nor PAM scores between the 2 groups (P > .05). All surgeons were highly rated by all patients. When clustered by surgeon, intervention subjects were less likely to indicate "top box" scores for the understanding domain of the CG-CAHPS question (OR 0.51, P < .001) and had decreased odds of high patient activation compared to control subjects (OR 0.67; P = .005). Among the most socially disadvantaged patients, there was no difference in control and intervention subjects in their likelihood of having high patient activation (P = .09). Conclusion: Highly rated foot and ankle surgeons who show and discuss PROM results may not improve patient experience or activation and may, in fact, decrease understanding or patient activation in select populations. Future work is needed to determine when PROM discussions are most beneficial and how best to present PROMs data, as we suspect that how the information was presented-and not the use of PROMs-resulted in our findings. Health literacy tools and/or communication training may better engage different patient groups regarding PROMs. Show less
Patients with sickle cell disease (SCD) experience a considerable physical and psychosocial disease burden. In recent years, the application of allogeneic hematopoietic stem cell transplantation ... Show morePatients with sickle cell disease (SCD) experience a considerable physical and psychosocial disease burden. In recent years, the application of allogeneic hematopoietic stem cell transplantation (HSCT) to treat adults with SCD has increased. A thorough understanding of patients' physical, mental, and social health before and after cure is needed to meet the needs of this growing group of patients. We aimed to explore the perspectives of adult SCD patients on the changes in their experienced health and personal life goals after being cured. A mixed-methods approach was used, comprising a semistructured interview and a set of 9 Patient Reported Outcomes Measurement Information System (PROMIS) measures. Adult SCD patients who underwent HSCT at least 1 year earlier were eligible to participate in the study. Interviews were thematically analyzed using MAXQDA software. PROMIS T scores were compared with reference scores of the general population using SPSS Statistics. Ten patients participated in the study; their median age was 29.5 years (range, 19 to 49 years), and their median time since HSCT was 2.7 years (range, 1.0 to 3.5 years). Themes from the interviews were (1) pain/living pain free, (2) physical wellbeing, (3) mental well-being, (4) perspective/outlook, (5) education/work, (6) family/friends, and (7) activities/participation. Following the PROMIS framework, we described these themes in a narrative synthesis according to health domain and categorized in 4 chronological time phases: before HSCT, first year post-transplantation, current situation, and future expectations. Physical health improved greatly, but transplantation-related toxicity, ongoing pain from avascular osteonecrosis, and fatigue negatively impacted quality of life in some patients. Furthermore, emotional struggles during the post-transplantation period were common, and patients expressed a need for psychological help. Patients reported improvements in social health and the ability to pursue personal life goals. The mean T scores of all PROMIS measures fell within the normal symptom limits compared with reference data of the general population, although, large variations were observed among the participants, matching our qualitative findings. In general, adult SCD patients experienced improved physical, mental, and social health after cure by HSCT and were able to pursue personal life goals. Yet they found themselves confronted with a new and unfamiliar reality that brought different challenges. Pain due to irreversible avascular osteonecrosis continued to have a negative impact. Clinicians should aim to help patients have realistic expectations before transplantation and offer timely psychological care. (c) 2023 The American Society for Transplantation and Cellular Therapy. Published by Elsevier Inc. Show less
This thesis aimed to lay the foundation for a new set of Dutch mental health instruments to measure depression and anxiety in an efficient, reliable, valid, and responsive manner. More specifically... Show moreThis thesis aimed to lay the foundation for a new set of Dutch mental health instruments to measure depression and anxiety in an efficient, reliable, valid, and responsive manner. More specifically, the Dutch-Flemish PROMIS adult v1.0 item banks for Depression and Anxiety were psychometrically evaluated for computerized adaptive test (CAT) administration in the Dutch clinical and general population. CAT is a modern methodology that can be used to develop instruments that measure both efficiently and reliably as only the most appropriate questions are administered, and assessment terminates as soon as sufficient reliability is achieved. For the PROMIS CAT instruments, this was demonstrated in the thesis: measuring depression and anxiety in Dutch persons was highly efficient and reliable. Moreover, the CAT instruments were shown to measure depression and anxiety sufficiently responsive and valid as well. This even includes longitudinal validity, which has barely been studied for other Dutch mental health instruments. Overall, it was concluded that the new instruments are an improvement over available instruments. Therefore, using the PROMIS CAT instruments in clinical practice may lead to more efficient and reliable measurement that supports professionals and patients in evaluating patients' treatment. Show less
Purpose Both the International Consortium for Health Outcomes Measurement and the National Institutes of Health recommend the use of Patient-Reported Outcomes Measurement Information System (PROMIS... Show morePurpose Both the International Consortium for Health Outcomes Measurement and the National Institutes of Health recommend the use of Patient-Reported Outcomes Measurement Information System (PROMIS (R)) measures in clinical care and research for stroke patients. This study aimed to systematically review the literature on the measurement properties and interpretability of PROMIS measures in stroke patients. Methods Nine databases were searched from January 1st, 2007 till April 12th, 2021 for studies concerning the measurement properties and interpretability of PROMIS measures in stroke patients. The findings of these studies were analyzed according to the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guideline for systematic reviews of Patient-Reported Outcome Measures (PROMs). Results Ten studies were included. The PROMIS Global Health was studied the most: its two subscales had sufficient structural validity in one study of very good quality, sufficient construct validity with > 75% of hypotheses tested confirmed (high GRADE rating), sufficient internal consistency, i.e. alpha >= 0.70 in two studies (high GRADE rating), sufficient reliability, i.e. ICC >= 0.70 in one study of doubtful quality, and indeterminate responsiveness in one study of inadequate quality. For other PROMIS measures, the measurement properties and interpretability were limitedly studied. Conclusion The PROMIS Global Health showed sufficient structural and construct validity and internal consistency in stroke patients. There is a need for further research on content validity, structural validity, and measurement invariance of PROMIS measures in stroke patients. Show less
Background: There is increased demand for valid, reliable, and responsive patient-reported outcome measures (PROMs) to evaluate treatment for Achilles tendon rupture, but not all PROMs currently in... Show moreBackground: There is increased demand for valid, reliable, and responsive patient-reported outcome measures (PROMs) to evaluate treatment for Achilles tendon rupture, but not all PROMs currently in use are reliable and responsive for this condition. Purpose: To evaluate the measurement properties of the Patient-Reported Outcomes Measurement Information System Physical Function (PROMIS PF) compared with other PROMs used after treatment for acute Achilles tendon rupture. Study Design: Cohort study (diagnosis); Level of evidence, 2. Methods: A retrospective cohort study with a follow-up questionnaire was performed. All adult patients with an acute Achilles tendon rupture between June 2016 and June 2018 with a minimum 12-month follow-up were eligible for inclusion. Functional outcome was assessed using the PROMIS PF computerized adaptive test (CAT), Foot and Ankle Ability Measure (FAAM) Activities of Daily Living (ADL), FAAM-Sports, and Achilles Tendon Total Rupture Score (ATRS). Pearson correlation (r) was used to assess the correlations between PROMs. Absolute and relative floor and ceiling effects were calculated. Results: In total, 103 patients were included (mean age, 44.7 years; 74% male); 82 patients (79.6%) underwent operative repair, while 21 patients (20.4%) underwent nonoperative management. The mean time between treatment and collection of PROMs was 25.3 months (range, 15-36 months). The mean scores were 55.4 +/- 9.2 (PROMIS PF), 92.9 +/- 12.2 (FAAM-ADL), 77.7 +/- 22.9 (FAAM-Sports), and 83.0 +/- 19.4 (ATRS). The ATRS was correlated with FAAM-ADL (r = 0.80; 95% CI, 0.72-0.86; P < .001) and FAAM-Sports (r = 0.86; 95% CI, 0.80-0.90; P < .001). The PROMIS PF was correlated with the FAAM-ADL (r = 0.66; 95% CI, 0.53-0.75; P < .001), FAAM-Sports (r = 0.65; 95% CI, 0.53-0.75; P < .001), and ATRS (r = 0.69; 95% CI, 0.58-0.78; P < .001). The PROMIS PF did not show absolute floor or ceiling effects (0%). The FAAM-ADL (35.9%), FAAM-Sports (15.8%), and ATRS (20.4%) had substantial absolute ceiling effects. Conclusion: The PROMIS PF, FAAM-ADL, and FAAM-Sports all showed a moderate to high mutual correlation with the ATRS. Only the PROMIS PF avoided substantial floor and ceiling effects. The results suggest that the PROMIS PF CAT is a valid, reliable, and perhaps the most responsive tool to evaluate patient outcomes after treatment for an Achilles tendon rupture. Show less
In the field of orthopedic trauma surgery, great progress has been made over the last decades which has improved patient care and enhanced the likelihood of surviving serious injury. As a result,... Show moreIn the field of orthopedic trauma surgery, great progress has been made over the last decades which has improved patient care and enhanced the likelihood of surviving serious injury. As a result, focus has shifted from patient survival to improving quality of life and reducing the burden of nonfatal injury. However, research-based advances that improve these outcomes for patients with orthopedic injuries have been constrained. The aims of this thesis were to provideinsight into the value of different study designs which evaluate the effects of medical interventions for trauma patients in everyday clinical practice and to assess the use of patient-reported outcome measures (PROMs) as an integrated part of research practice for the assessment of quality of life after nonfatal trauma injury. Show less
Flens, G.; Smits, N.; Terwee, C.B.; Pijck, L.; Spinhoven, P.; Beurs, E. de 2019
We investigated longitudinal measurement invariance in the Dutch-Flemish PROMIS adult v1.0 item banks for Depression and Anxiety using two clinical samples with mood and anxiety disorders (n = 640... Show moreWe investigated longitudinal measurement invariance in the Dutch-Flemish PROMIS adult v1.0 item banks for Depression and Anxiety using two clinical samples with mood and anxiety disorders (n = 640 and n = 528, respectively). Factor analysis was used to evaluate whether the item banks were sufficiently unidimensional at two test-occasions and whether the measured constructs remained the same over time. The results indicated that the item banks were sufficiently unidimensional, but the thresholds and residual variances of the constructs changed over time. However, using tentative rules of thumb, these invariance violations did not substantially affect the endorsement of a specific response category of a specific item at a specific test-occasion. Furthermore, the impact on the mean latent change scores of the item banks remained below the proposed cutoff value for substantial bias. These findings suggest that the invariance violations lacked practical significance for test-users, meaning that the item banks provide sufficiently invariant latent factor scores for use in clinical practice. Show less
Flens, G.; Smits, N.; Terwee, C.B.; Dekker, J.; Huijbrechts, I.; Spinhoven, P.; Beurs, E. de 2019
We used the Dutch-Flemish version of the USA PROMIS adult V1.0 item bank for Anxiety as input for developing a computerized adaptive test (CAT) to measure the entire latent anxiety continuum. First... Show moreWe used the Dutch-Flemish version of the USA PROMIS adult V1.0 item bank for Anxiety as input for developing a computerized adaptive test (CAT) to measure the entire latent anxiety continuum. First, psychometric analysis of a combined clinical and general population sample (N = 2,010) showed that the 29-item bank has psychometric properties that are required for a CAT administration. Second, a post hoc CAT simulation showed efficient and highly precise measurement, with an average number of 8.64 items for the clinical sample, and 9.48 items for the general population sample. Furthermore, the accuracy of our CAT version was highly similar to that of the full item bank administration, both in final score estimates and in distinguishing clinical subjects from persons without a mental health disorder. We discuss the future directions and limitations of CAT development with the Dutch-Flemish version of the PROMIS Anxiety item bank. Show less
Purpose To investigate the validity of comparisons across patients with different musculoskeletal disorders and persons from the general population by evaluating differential item functioning (DIF)... Show morePurpose To investigate the validity of comparisons across patients with different musculoskeletal disorders and persons from the general population by evaluating differential item functioning (DIF) for the PROMIS physical function (PROMIS-PF), pain interference (PROMIS-PI), and pain behavior (PROMIS-PB) item banks.Methods Patients with chronic pain, rheumatoid arthritis (RA), or osteoarthritis (OA); patients receiving physiotherapy (PT); and persons from the Dutch general population completed the full Dutch-Flemish PROMIS-PF (121-items), PROMIS-PI (40-items), or PROMIS-PB (39-items) banks. DIF was assessed with ordinal logistic regression models and McFadden's pseudo R-2-change of >= 2% as critical value. The impact of DIF on item scores and the T-scores per bank was examined by inspecting item characteristic curves (ICCs) and test characteristic curves (TCCs).Results 2762 patients with chronic pain, 2029 with RA, 1247 with OA, 805 receiving PT, and 1310 healthy persons participated. For the PROMIS-PF, 25 out of 121 items were flagged for DIF, of which 10 items were flagged in multiple comparisons. For the PROMIS-PI, only 2 out of 40 items were flagged for DIF and for the PROMIS-PB, only 3 out of 39 items. Most DIF items had R-2 values just above the critical value of 2% and all showed uniform DIF. The ICCs and TCCs showed that the magnitude and impact of DIF on the item and T-scores were negligible.Conclusions This study supports the universal applicability of PROMIS across (patient) populations. Comparisons across patients with different musculoskeletal disorders and persons from the general population are valid, when applying the PROMIS-PF, PROMIS-PI, and PROMIS-PB banks. Show less
