Cerebral palsy research network community registry adult surveys on function & pain: Successes, challenges, and future directions.

NARRATIVE SUMMARY: The formation of a patient-reported outcomes registry to provide information about functional changes and pain among adults with cerebral palsy (CP) was identified as a priority to address the gap in knowledge and practice about aging and CP. The Cerebral Palsy Research Network collaborated with consumers, clinicians, and researchers to create an interactive internet platform, MyCP, to host a Community Registry. MyCP also provides educational programming, access to webinars and community forums, and fitness opportunities. The registry hosts surveys on function and pain for adults with CP, which provide cross-sectional and longitudinal data about these important issues. Surveys include previously validated measures with normative values that have been used with other populations and investigator developed questions. Enrollment in the registry is growing but needs to reflect the population of adults with CP, which limits generalizability. Future initiatives involve strategies to increase consumer engagement and enrollment.

Movement and Pressure Injury Prevention Care for Nursing Home Residents: Addressing the Nescience.

OBJECTIVE: To compare movement associated with position changes among nursing home residents who remain in lying versus upright positions for more than 2 hours and among residents living with obesity, dementia, or neither condition. METHODS: The authors conducted a descriptive exploratory study using secondary data (N = 934) from the Turn Everyone And Move for Ulcer Prevention (TEAM-UP) clinical trial to examine transient movements (<60 seconds) within prolonged periods of 2 to 5 hours without repositioning. RESULTS: Nursing home residents exhibit significantly more episodic transient movements when upright than lying. Residents with obesity or dementia exhibited similar frequencies of episodic transient movements compared with residents with neither obesity nor dementia. Upright or lying movements were more frequent among residents with obesity than among those with neither obesity nor dementia selectively when prolonged events ranged from 2 to 4 hours. Pairwise comparisons of movement rates among resident subgroups (living with obesity, living with dementia, or neither group) across repositioning intervals showed episodic transient movements were significantly higher across all subgroups for repositioning intervals up to 3 hours when compared with repositioning intervals of greater than 3 hours. CONCLUSIONS: Findings challenge assumptions that nursing home residents are inactive and at risk for prolonged sitting. These preliminary findings, along with TEAM-UP findings where no pressure injuries occurred in up to 5 hours in prolonged positions, support establishing a standard 3-hour repositioning interval with use of high-density mattresses without a negative impact on pressure injury occurrence. There should be caution when considering repositioning intervals greater than 3 hours. Further research is indicated to explore protective effect of episodic transient movements of other subgroups.

Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Adults with cerebral palsy (CP) have unique healthcare needs and risks, including high risk of functional decline. Understanding functional decline is an area of priority for CP research. OBJECTIVE: Describe factors associated with patient-reported changes in function among adults with CP living in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the CP Research Network (CPRN) Community Registry. RESULTS: Participants included 263 respondents (76% female (n = 200); mean age 42 years (SD 14); 95% White (n = 249); 92% non-Hispanic (n = 241)). Many reported functional changes, most commonly a decline in gross motor function since childhood (n = 158, 60%). Prevalence of gross motor decline varied significantly by Gross Motor Function Classification System (GMFCS) level (p < 0.001), but neither hand function decline (p = 0.196) nor communication decline (p = 0.994) differed by GMFCS. All types of decline increased with increasing age, with statistically significant differences between age groups (p < 0.001 gross motor; p = 0.003 hand function; p = 0.004 communication). Those with spastic CP (n = 178) most commonly reported gross motor functional decline (n = 108/178, 60.7%). However, the prevalence of gross motor decline did not significantly differ between those with spastic CP and those without spastic CP (p = 0.789). CONCLUSIONS: Many adults in the CPRN Community Registry reported functional decline, most commonly in gross motor function. Functional decline across domains increased with age. Further research into risk stratification and preventive and rehabilitative measures is needed to address functional decline across the lifespan.

Adults with cerebral palsy and chronic pain experience: A cross-sectional analysis of patient-reported outcomes from a novel North American registry.

BACKGROUND: Chronic pain is common among adults with cerebral palsy (CP) and an area of priority for research and treatment. OBJECTIVE: Describe the pain experience and its functional and quality of life impact among adults with CP with chronic pain in the community. METHODS: Cross-sectional analysis of adult patient-reported outcomes collected by the Cerebral Palsy Research Network Community Registry. RESULTS: Among all participants in the Community Registry, n = 205 reported having chronic pain, and 73 % of those (n = 149) completed the Chronic Pain Survey Bundle (75 % female; mean age 43 years (SD 14 years); 94 % White; 91 % non-Hispanic). Back and weight-bearing joints of lower extremities were most frequently reported as painful. There were no differences in average pain severity scores between varying GMFCS levels (H = 6.25, p = 0.18) and age groups (H = 3.20, p = 0.36). Several nonpharmacologic interventions were most frequently reported as beneficial. Participants with moderate to severe average pain scores (5-10) had higher levels of pain interference (p < 0.01) and depression (p < 0.01), and lower levels of satisfaction with social roles (p < 0.01) and lower extremity function (p < 0.01). Pain interference was significantly positively correlated with depression, and negatively correlated with upper and lower extremity function and satisfaction with social roles. CONCLUSIONS: Chronic pain is experienced by adults with CP of varying ages and functional levels and is associated with several adverse quality of life and functional outcomes. Improved understanding of chronic pain in this population will facilitate the development and study of treatment interventions optimizing health, function, participation, and quality of life.

Should We Use COMM (Current Opioid Misuse Measure) to Screen for Opioid Abuse in Patients With Cancer Pain?

BACKGROUND: Growing concerns about opioid use disorder (OUD) and the resulting decrease in opioid availability for patients with cancer pain highlight the need for reliable screening tools to identify the subset of patients at increased risk for aberrant opioid use. Our study examines the utility of Current Opioid Misuse Measure (COMM) recommended by the NCCN Clinical Practice Guidelines in Oncology for Adult Cancer Pain. PATIENTS AND METHODS: We analyzed prospectively collected patient-reported outcomes of 444 consecutive patients with cancer seen in pain clinics of a cancer center at 2 time points within 100 days. The relationship of COMM to other OUD screening tools, pain, opioid doses, patient demographics, and mortality was examined using univariate and multivariable logistic regression. We also examined individual items of COMM for face validity. RESULTS: Among 444 patients who completed pain surveys at 2 time points, 157 (35.4%) did not complete COMM surveys. Using a COMM cutoff of ≥13, a total of 84 patients (29.3%; 84/287) scored positive for aberrant drug use. As patients remained on opioids for 49 to 100 days, the likelihood of improving COMM score (turning from positive to negative) was 6.1 times greater than the reverse. The number of patients with COMM ≥13 was 3.8 times higher than the number of patients with CPT diagnostic codes for OUD, 5.3 times higher than those with a positive urine drug screening, and 21 times higher than those with a positive CAGE (Cut Down, Annoyed, Guilty, Eye-Opener Questionnaire) score. COMM ≥13 was not associated with pain relief response (worst pain intensity score ≥2 points on the Brief Pain Inventory), opioid doses, gender, or age. Contrary to the intended use of COMM to identify aberrant opioid use, COMM ≥13 predicted mortality: patients with COMM ≥13 were 1.9 times more likely to die within 12 months. CONCLUSIONS: Our study found that using COMM in a cancer population may significantly overestimate the risk of opioid misuse. Using COMM without modifications can create an additional barrier to cancer pain management, such as limiting appropriate opioid use.

The Nursing Home Severity Index and Application to Pressure Injury Risk: Measure Development and Validation Study.

BACKGROUND: An assessment tool is needed to measure the clinical severity of nursing home residents to improve the prediction of outcomes and provide guidance in treatment planning. OBJECTIVE: This study aims to describe the development of the Nursing Home Severity Index, a clinical severity measure targeted for nursing home residents with the potential to be individually tailored to different outcomes, such as pressure injury. METHODS: A retrospective nonexperimental design was used to develop and validate the Nursing Home Severity Index using secondary data from 9 nursing homes participating in the 12-month preintervention period of the Turn Everyone and Move for Ulcer Prevention (TEAM-UP) pragmatic clinical trial. Expert opinion and clinical literature were used to identify indicators, which were grouped into severity dimensions. Index performance and validation to predict risk of pressure injury were accomplished using secondary data from nursing home electronic health records, Minimum Data Sets, and Risk Management Systems. Logistic regression models including a resident's Worst-Braden score with/without severity dimensions generated propensity scores. Goodness of fit for overall models was assessed using C statistic; the significance of improvement of fit after adding severity components to the model was determined using the likelihood ratio chi-square test. The significance of each component was assessed with odds ratios. Validation based on randomly selected 65% training and 35% validation data sets was used to confirm the reliability of the severity measure. Finally, the discriminating ability of models was evaluated using propensity stratification to evaluate which model best discriminated between residents with/without pressure injury. RESULTS: Data from 1015 residents without pressure injuries on admission were used for the Nursing Home Severity Index-Pressure Injury and included laboratory, weights/vitals/pain, underweight, and locomotion severity dimensions. Logistic regression C statistic measuring predictive accuracy increased by 19.3% (from 0.627 to 0.748; P<.001) when adding four severity dimensions to Worst-Braden scores. Significantly higher odds of developing pressure injuries were associated with increasing dimension scores. The use of the three highest propensity deciles predicting the greatest risk of pressure injury improved predictive accuracy by detecting 21 more residents who developed pressure injury (n=58, 65.2% vs n=37, 42.0%) when both severity dimensions and Worst-Braden score were included in prediction modeling. CONCLUSIONS: The clinical Nursing Home Severity Index-Pressure Injury was successfully developed and tested using the outcome of pressure injury. Overall predictive capacity was enhanced when using severity dimensions in combination with Worst-Braden scores. This index has the potential to significantly impact the quality of care decisions aimed at improving individual pressure injury prevention plans. TRIAL REGISTRATION: ClinicalTrials.gov NCT02996331; http://clinicaltrials.gov/ct2/show/NCT02996331.

Nursing Assessment of Pressure Injury Risk with the Braden Scale Validated against Sensor-Based Measurement of Movement.

Nursing staff assessment to accurately identify pressure injury (PrI) risk is a hallmark in PrI prevention care. Risk scores from the Braden Scale for Predicting Pressure Sore Risk© (hereafter Braden), a commonly used tool for assessing PrI risk, signal the need for preventative care. Braden Mobility, Activity, and Sensory Perception subscale subgroups associated with repositioning movement features help identify preventative strategies that minimize pressure intensity and duration. Evidence confirming subscale rating accuracy is needed. This study compared assessment score accuracy with movement data collected via accelerometer sensor. Sample included 913 nursing home residents from the Turn Everyone and Move for Pressure Ulcer Prevention (TEAM-UP) cluster randomized trial. Movements and Braden Mobility and Activity subscale scores were evaluated for significant differences and associations. Mobility subgroups explained a small-medium amount of variance in mean lying and upright movement features (0.002 ≤ R2 ≤ 0.195). Activity subgroups explained a small-medium amount of variance in mean lying, upright, and ambulating movements (0.016 ≤ R2 ≤ 0.248). Significant associations occurred among subscale subgroups and most movements. Nursing assessment ratings using Braden scale's Mobility and Activity subscale scores are accurate indicators of actual repositioning movements and can be relied upon for PrI prevention care planning for older adults.

Movement Patterns of Transient and Prolonged Positioning Events in Nursing Home Residents: Results from the TEAM-UP Trial.

OBJECTIVE: To characterize transient and prolonged body position patterns in a large sample of nursing home (NH) residents and describe the variability in movement patterns based on time of occurrence. METHODS: This study is a descriptive, exploratory analysis of up to 28 days of longitudinal accelerometer data for 1,100 NH residents from the TEAM-UP (Turn Everyone and Move for Ulcer Prevention) clinical trial. Investigators analyzed rates of transient events (TEs; less than 60 seconds) and prolonged events (PEs; 60 seconds or longer) and their interrelationships by nursing shift. RESULTS: Residents' positions changed for at least 1 minute (PEs) nearly three times per hour. Shorter-duration movements (TEs) occurred almost eight times per hour. Residents' PE rates were highest in shift 2 (3 pm to 11 pm ), when the median duration and maximum lengths of PEs were lowest; the least active time of day was shift 3 (11 pm to 7 am ). Three-quarters of all PEs lasted less than 15 minutes. The rate of TEs within PEs decreased significantly as the duration of PEs increased. CONCLUSIONS: The NH residents demonstrate complex patterns of movements of both short and prolonged duration while lying and sitting. Findings represent how NH residents naturally move in real-world conditions and provide a new set of metrics to study tissue offloading and its role in pressure injury prevention.

Characteristics of Nursing Home Resident Movement Patterns: Results from the TEAM-UP Trial.

OBJECTIVE: To determine movement patterns of nursing home residents, specifically those with dementia or obesity, to improve repositioning approaches to pressure injury (PrI) prevention. METHODS: A descriptive exploratory study was conducted using secondary data from the Turn Everyone And Move for Ulcer Prevention (TEAM-UP) clinical trial examining PrI prevention repositioning intervals. K-means cluster analysis used the average of each resident's multiple days' observations of four summary mean daily variables to create homogeneous movement pattern clusters. Growth mixture models examined movement pattern changes over time. Logistic regression analyses predicted resident and nursing home cluster group membership. RESULTS: Three optimal clusters partitioned 913 residents into mutually exclusive groups with significantly different upright and lying patterns. The models indicated stable movement pattern trajectories across the 28-day intervention period. Cluster profiles were not differentiated by residents with dementia (n = 450) or obesity (n = 285) diagnosis; significant cluster differences were associated with age and Braden Scale total scores or risk categories. Within clusters 2 and 3, residents with dementia were older (P < .0001) and, in cluster 2, were also at greater PrI risk (P < .0001) compared with residents with obesity; neither group differed in cluster 1. CONCLUSIONS: Study results determined three movement pattern clusters and advanced understanding of the effects of dementia and obesity on movement with the potential to improve repositioning protocols for more effective PrI prevention. Lying and upright position frequencies and durations provide foundational knowledge to support tailoring of PrI prevention interventions despite few significant differences in repositioning patterns for residents with dementia or obesity.

Effect of Varying Repositioning Frequency on Pressure Injury Prevention in Nursing Home Residents: TEAM-UP Trial Results.

OBJECTIVE: To investigate the clinical effectiveness of three nursing-home-wide repositioning intervals (2-, 3-, or 4-hour) without compromising pressure injury (PrI) incidence in 4 weeks. METHODS: An embedded pragmatic cluster randomized controlled trial was conducted in nine nursing homes (NHs) that were randomly assigned to one of three repositioning intervals. Baseline (12 months) and 4-week intervention data were provided during the TEAM-UP (Turn Everyone And Move for Ulcer Prevention) study. Intervention residents were without current PrIs, had PrI risk (Braden Scale score) ≥10 (not severe risk), and used viable 7-inch high-density foam mattresses. Each arm includes three NHs with an assigned single repositioning interval (2-, 3-, or 4-hour) as standard care during the intervention. A wireless patient monitoring system, using wearable single-use patient sensors, cued nursing staff by displaying resident repositioning needs on conveniently placed monitors. The primary outcome was PrI incidence; the secondary outcome was staff repositioning compliance fidelity. RESULTS: From May 2017 to October 2019, 1,100 residents from nine NHs were fitted with sensors; 108 of these were ineligible for some analyses because of missing baseline data. The effective sample size included 992 residents (mean age, 78 ± 13 years; 63% women). The PrI incidence during the intervention was 0.0% compared with 5.24% at baseline, even though intervention resident clinical risk scores were significantly higher (P < .001). Repositioning compliance for the 4-hour repositioning interval (95%) was significantly better than for the 2-hour (80%) or 3-hour (90%) intervals (P < .001). CONCLUSIONS: Findings suggest that current 2-hour protocols can be relaxed for many NH residents without compromising PrI prevention. A causal link was not established between repositioning interval treatments and PrI outcome; however, no new PrIs developed. Compliance improved as repositioning interval lengthened.

To Turn or Not to Turn: Exploring Nurses' Decision-Making Processes Concerning Regular Turning of Nursing Home Residents.

Background: Nursing home (NH) residents are at high-risk for pressure injuries (PrIs), and those living with Alzheimer's Disease and Related Dementias (ADRD) are at even greater risk. Understanding how nursing staff approach repositioning remains critical. Methods: As part of an ongoing clinical trial, this mixed-method prospective, exploratory, descriptive study examined repositioning efforts for PrI prevention. An investigator-developed checklist guided researcher observations, and focus groups revealed staff perspective on resident behaviors and corresponding repositioning approaches. Focus group transcripts were analyzed using the constant comparative coding method. Results: Repositioning observations were conducted for 88 residents. Resident behaviors and nursing approaches were similar between the ADRD (n = 62, 70%) and non-ADRD (n = 26, 30%) groups. Thirty-six staff participated in one of six focus group sessions. A conceptual model was developed to depict the repositioning process. Staff revealed care is guided by clinical frameworks and guidelines, along with resident preferences and behaviors. Conclusions: Protocol-driven, standardized PrI prevention care may limit the capacity to honor repositioning preferences. Insights from the focus groups highlight the importance of being cognizant of competing factors that may interfere with successful repositioning. Approaches by staff may be protocol-driven or an integrated method of care.

Quasi-Contextualized Speech Treatment in Traumatic Brain Injury Inpatient Rehabilitation: Effects on Outcomes During the First Year After Discharge.

OBJECTIVE: To evaluate the effect of providing quasi-contextualized speech therapy, defined as metacognitive, compensatory, or strategy training applied to cognitive and language impairments to facilitate the performance of future real-life activities, on functional outcomes up to 1 year following traumatic brain injury (TBI). SETTING: Acute inpatient rehabilitation. PARTICIPANTS: Patients enrolled during the TBI-Practice-Based Evidence (TBI-PBE) study (n = 1760), aged 14 years or older, who sustained a severe, moderate, or complicated mild TBI, received speech therapy in acute inpatient rehabilitation at one of 9 US sites, and consented to follow-up 3 and 9 months postdischarge from inpatient rehabilitation. DESIGN: Propensity score methods applied to a database consisting of multisite, prospective, longitudinal observational data. MAIN MEASURES: Participation Assessment with Recombined Tools-Objective-17, FIM Motor and Cognitive scores, Satisfaction With Life Scale, and Patient Health Questionnaire-9. RESULTS: When at least 5% of therapy time employed quasi-contextualized treatment, participants reported better community participation during the year following discharge. Quasi-contextualized treatment was also associated with better motor and cognitive function at discharge and during the year after discharge. The benefit, however, may be dependent upon a balance of rehabilitation time that relied on contextualized treatment. CONCLUSIONS: The use of quasi-contextualized treatment may improve outcomes. Care should be taken, however, to not provide quasi-contextualized treatment at the expense of contextualized treatment.

Real-time Positioning Among Nursing Home Residents Living With Dementia: A Case Study.

Dementia contributes to the development of pressure injuries (PrIs). PURPOSE: This study describes the real-time body positions of 2 nursing home (NH) residents, residing in the United States and living with dementia, to inform development of PrI prevention strategies tailored to individual risk profiles. METHODS: As part of a larger study, eligible residents were fitted with a triaxial accelerometer sensor placed on the anterior chest to monitor body positions 24-hours daily through a 4-week monitoring period. The current study used an observational, prospective design during routine repositioning events for 2 residents. A convenience sample of 2 residents from a single NH wing who were considered moderately at risk for PrI development (Braden Scale score 13-14) with a Brief Interview for Mental Status score in the severely impaired range were selected based on nursing staff recommendation. RESULTS: Sensor data showed that both residents, although "chairfast" according to the Braden Scale, spent <5% in an upright position and the great majority of time reclining at an angle <50%. One (1) resident demonstrated a persistent side preference. CONCLUSIONS: Wearable sensors are not a long-term solution for protecting those with dementia from PrI formation but do provide a crude picture of overall body positions throughout the 24-hour day that may inform individualized PrI prevention strategies. Studies including large samples of NH residents living with dementia are warranted.

Mitigating the Effects of a Pandemic: Facilitating Improved Nursing Home Care Delivery Through Technology.

The coronavirus disease (COVID-19) pandemic has been particularly challenging for nursing home staff and residents. Centers for Medicare & Medicaid Services regulation waivers are burdening staff and affecting how care is delivered. Residents are experiencing social isolation, which can result in physical and behavioral health issues, particularly for persons with dementia. These challenges can be addressed in part through technology adaptations. Full integration of electronic health record systems can improve workflow and care quality. Telehealth can improve access to outside providers, provide remote monitoring, and improve social connectedness. Electronic and audiovisual programs can be used for end-of-life planning and information sharing between nursing home staff and families. Online learning systems and other online resources provide flexible options for staff education and training. Investing in and adapting technology can help mitigate workforce stress and improve the quality of nursing home care during and after the COVID-19 crisis.

Insight Into the Movement Behaviors of Nursing Home Residents Living With Obesity: A Report of Two Cases.

Obesity (body mass index [BMI] ≥30 kg/m2) can have a profound influence on the likelihood of developing a pressure injury (PrI); little is known about the movement behaviors (movement frequency, body position frequency, and position duration) of obese individuals. PURPOSE: This report examines 2 cases of obese nursing home residents and their movement behaviors in relation to their potential influence on overall PrI risk. METHODS: Resident movements were monitored 24 hours/day using a wearable sensor, and repositioning events were observed as part of a larger study examining repositioning intervals. Braden Pressure Ulcer Risk Assessment was conducted weekly. RESULTS: Both residents (BMI 39 kg/m2 and 50 kg/m2) had limitations in movement with prolonged periods spent in a single body position. Each resident addressed movement challenges unique to their desire to remain mobile and level of dependency on nursing staff. CONCLUSION: Presence of obesity is a factor affecting resident movement and creates environmental and psychosocial barriers to health. Nurses can play a key role in PrI prevention by addressing these barriers and encouraging positive, long-term behavior changes that mitigate risk. Future research should guide tailored PrI prevention protocols and national/ international guidelines for obese residents.

Day-of-Injury Computed Tomography and Longitudinal Rehabilitation Outcomes: A Comparison of the Marshall and Rotterdam Computed Tomography Scoring Methods.

OBJECTIVE: The aim of the study was to compare the relative predictive value of Marshall Classification System and Rotterdam scores on long-term rehabilitation outcomes. This study hypothesized that Rotterdam would outperform Marshall Classification System. DESIGN: The study used an observational cohort design with a consecutive sample of 88 participants (25 females, mean age = 42.0 [SD = 21.3]) with moderate to severe traumatic brain injury who were admitted to trauma service with subsequent transfer to the rehabilitation unit between February 2009 and July 2011 and who had clearly readable computed tomography scans. Twenty-three participants did not return for the 9-mo postdischarge follow-up. Day-of-injury computed tomography images were scored using both Marshall Classification System and Rotterdam criteria by two independent raters, blind to outcomes. Functional outcomes were measured by length of stay in rehabilitation and the cognitive and motor subscales of the Functional Independence Measure at rehabilitation discharge and 9-mo postdischarge follow-up. RESULTS: Neither Marshall Classification System nor Rotterdam scales as a whole significantly predicted Functional Independence Measure motor or cognitive outcomes at discharge or 9-mo follow-up. Both scales, however, predicted length of stay in rehabilitation. Specific Marshall scores (3 and 6) and Rotterdam scores (5 and 6) significantly predicted subacute outcomes such as Functional Independence Measure cognitive at discharge from rehabilitation and length of stay. CONCLUSIONS: Marshall Classification System and Rotterdam scales may have limited utility in predicting long-term functional outcome, but specific Marshall and Rotterdam scores, primarily linked to increased severity and intracranial pressure, may predict subacute outcomes.

The Wound Healing Index for Predicting Venous Leg Ulcer Outcome.

Objective: To develop a venous leg ulcer (VLU) risk stratification system for use in research and clinical practice. Approach: U.S. Wound Registry data were examined retrospectively and assigned an outcome. Bivariate analysis identified significant variables (p < 0.05) that were used to create a multivariable logistic regression model. Ulcers with data for wound area at the first visit before debridement were included in regression analysis, which was based on a 90% development sample. The model was validated on a hold-out 10% data sample. Results: The original dataset included 26,713 VLUs, of which 11,773 ulcers were eligible for preliminary analysis and 10,942 ulcers were eligible for regression analysis. The 90% development model included 9,898 ulcers, of which 7,498 healed (75.8%). The 10% validation sample included 1,044 ulcers, of which 809 healed (77.5%). The following variables significantly predicted healing: number of concurrent wounds of any etiology, wound size, wound age (in days), evidence of bioburden/infection, being nonambulatory, and hospitalization for any reason. Innovation: The VLU Wound Healing Index (WHI) is a comprehensive, validated risk stratification model for predicting VLU healing that incorporates patient- and wound-specific variables. Conclusions: The WHI can identify which VLUs most likely require adjunctive therapies to heal, prioritize referral to venous experts, risk-stratify ulcers to create more generalizable clinical trials and understand the impact of clinical interventions. The Centers for Medicare and Medicaid Services accepts this method for reporting VLU outcome under the Quality Payment Program.

Cerebral Palsy Research Network Clinical Registry: Methodology and Baseline Report.

OBJECTIVE: To apply practice-based evidence to clinical management of cerebral palsy (CP). The process of establishing purpose, structure, logistics, and elements of a multi-institutional registry and the baseline characteristics of initial enrollees are reported. DESIGN: A consensus-building process among consumers, clinicians, and researchers used a participatory action process. SETTING: Community, hospitals, and universities. PARTICIPANTS: More than 100 clinicians, researchers, and consumers and more than 1858 enrollees in the registry. MAIN OUTCOME MEASURES: Not applicable. RESULTS: Consensus was that the purpose of registry was to (1) quantify practice variation, (2) facilitate quality improvement (QI), and (3) perform comparative effectiveness research (CER). Collecting data during routine clinical care using the electronic medical record was determined to be a sustainable plan for data acquisition and management. Clinicians from multiple disciplines defined salient characteristics of individuals and interventions for the registry elements. The registry was central to the clinical research network, and a leadership structure was created. A leading electronic health record platform adopted the registry elements. Twenty-four sites have initiated the data collection process and agreed to export data to the registry. Currently 12 are collecting data. Number of enrollees and characteristics were similar to other population registers. CONCLUSIONS: This is the first multi-institutional CP registry that contains the patient and treatment characteristics needed for QI and CER. The Cerebral Palsy Research Network registry elements are implemented in a versatile electronic platform and minimize burden to clinicians. The resultant registry is available for any institution to participate and is growing rapidly.