Incidence, Recognition, and Follow-up of Laboratory Evidence of Acute Kidney Injury in Primary Care Practices: Analysis of 93,259 Creatinine Results.

BACKGROUND: Community-acquired acute kidney injury (CA-acute kidney injury) is under-recognized in the outpatient setting and is associated with adverse outcomes. METHODS: We analyzed the incidence of CA-acute kidney injury in an academic primary care practice and community health center and assessed recognition and follow-up as determined by repeat creatinine measurement (closed-loop). We reviewed 93,259 specimens for 36,593 unique patients from January 1, 2018, through December 31, 2021. RESULTS: There were 220 unique patients with CA-acute kidney injury, defined as a > 75% increase in creatinine from baseline (incidence: 150/100,000; 0.15% per year). One hundred thirty seven patients (62.3%) had repeat serum creatinine performed within 30 days. Chart reviews of the 83 (37.72%) patients with open loops found there was no follow-up creatinine ordered in 69/83 (83.1%) patients. Mean baseline creatinine was higher and estimated glomerular filtration rate (eGFR) was lower in the closed-loop group (0.92 ± 0.4 mg/dL; 84.45 ± 27.49 mL/min) vs the open-loop group (0.63 ± 0.34 mg/dL; 105.19 ± 26.67 mL/min) (P < .0001). Preexisting chronic kidney disease was more prevalent in closed-loop patients (35/137; 25.6%) compared with those with open loops (3/83; 3.6%). Patients with baseline chronic kidney disease were more likely to have closed loops. Progression to new chronic kidney disease was common among CA-acute kidney injury patients, occurring in 25% of open-loop and 24.1% of closed-loop patients. New baseline eGFR was lower in all groups. CONCLUSIONS: Clinicians frequently overlooked a clinically significant change in eGFR, especially when the baseline creatinine and incident creatinine levels were in the "normal" range.

Do patients who read visit notes on the patient portal have a higher rate of "loop closure" on diagnostic tests and referrals in primary care? A retrospective cohort study.

OBJECTIVES: The 2021 US Cures Act may engage patients to help reduce diagnostic errors/delays. We examined the relationship between patient portal registration with/without note reading and test/referral completion in primary care. MATERIALS AND METHODS: Retrospective cohort study of patients with visits from January 1, 2018 to December 31, 2021, and order for (1) colonoscopy, (2) dermatology referral for concerning lesions, or (3) cardiac stress test at 2 academic primary care clinics. We examined differences in timely completion ("loop closure") of tests/referrals for (1) patients who used the portal and read ≥1 note (Portal + Notes); (2) those with a portal account but who did not read notes (Portal Account Only); and (3) those who did not register for the portal (No Portal). We estimated the predictive probability of loop closure in each group after adjusting for socio-demographic and clinical factors using multivariable logistic regression. RESULTS: Among 12 849 tests/referrals, loop closure was more common among Portal+Note-readers compared to their counterparts for all tests/referrals (54.2% No Portal, 57.4% Portal Account Only, 61.6% Portal+Notes, P < .001). In adjusted analysis, compared to the No Portal group, the odds of loop closure were significantly higher for Portal Account Only (OR 1.2; 95% CI, 1.1-1.4), and Portal+Notes (OR 1.4; 95% CI, 1.3-1.6) groups. Beyond portal registration, note reading was independently associated with loop closure (P = .002). DISCUSSION AND CONCLUSION: Compared to no portal registration, the odds of loop closure were 20% higher in tests/referrals for patients with a portal account, and 40% higher in tests/referrals for note readers, after controlling for sociodemographic and clinical factors. However, important safety gaps from unclosed loops remain, requiring additional engagement strategies.

Low Rate of Completion of Recommended Tests and Referrals in an Academic Primary Care Practice with Resident Trainees.

BACKGROUND: A frequent, preventable cause of diagnostic errors involves failure to follow up on diagnostic tests, referrals, and symptoms-termed "failure to close the diagnostic loop." This is particularly challenging in a resident practice where one third of physicians graduate annually, and rates of patient loss due to these transitions may lead to more opportunities for failure to close diagnostic loops. The aim of this study was to determine the prevalence of failure of loop closure in a resident primary care clinic compared to rates in the faculty practice and identify factors contributing to failure. METHODS: This retrospective cohort study included all patient visits from January 1, 2018, to December 31, 2021, at two academic medical center-based primary care practices where residents and faculty practice in the same setting. The primary outcome was prevalence of failure to close the loop for (1) dermatology referrals, (2) colonoscopy, and (3) cardiac stress testing. The primary predictor was resident vs. faculty status of the ordering provider. The authors present an unadjusted analysis and the results of a multivariable logistic regression analysis incorporating all patient factors to determine their association with loop closure. RESULTS: Of 12,282 orders for referrals and tests for the three studied areas, 1,929 (15.7%) were ordered by a resident physician. Of resident orders for all three tests, 52.9% were completed within the designated time vs. 58.4% for orders placed by attending physicians (p < 0.01). In an unadjusted analysis by test type, a similar trend was seen for colonoscopy (51.4% completion rate for residents vs. 57.5% for attending physicians, p < 0.01) and for cardiac stress testing (55.7% completion rate for residents vs. 61.2% for attending physicians), though a difference was not seen for dermatology referrals (64.2% completion rate for residents vs. 63.7% for attending physicians). In an adjusted analysis, patients with resident orders were less likely than attendings to close the loop for all test types combined (odds ratio 0.88, 95% confidence interval 0.79-0.98), with low rates of test completion for both physician groups. CONCLUSION: Loop closure for three diagnostic interventions was low for patients in both faculty and resident primary care clinics, with lower loop closure rates in resident clinics. Failure to close diagnostic loops presents a safety challenge in primary care and is of particular concern for training programs.

Completion Rates and Timeliness of Diagnostic Colonoscopies for Rectal Bleeding in Primary Care.

BACKGROUND: Rectal bleeding is the most common presenting symptom of colorectal cancer, and guidelines recommend timely follow-up, usually with colonoscopy to ensure timely diagnoses of colorectal cancer. OBJECTIVE: Identify loop closure rates and vulnerable process points for patients with rectal bleeding. DESIGN: Retrospective cohort study, using medical record review of patients aged ≥ 40 with index diagnosis of rectal bleeding at 2 primary practices-an urban academic practice and affiliated community health center, between January 1, 2018, and December 31, 2020. Patients were classified as having completed recommended follow-up workup ("closed loop") vs. not ("open loop"). Open loop patient cases were categorized into six types of process failures. PARTICIPANTS: A total of 837 patients had coded diagnoses of rectal bleeding within study window. Sixty-seven were excluded based on prior colectomy, clinical presentation more consistent with upper GI bleed, no rectal bleeding documented on chart review, or expired during the follow-up period, leaving 770 patients included. MAIN MEASURES: Primary outcomes were percentages of patient cases classified as "open loops" and distribution of these cases into six categories of process failure that were identified. KEY RESULTS: 22.3% of patients (N = 172) failed to undergo timely recommended workup for rectal bleeding. Largest failure categories were patients for whom no procedure was ordered (N = 62, 36%), followed by patients with procedures ordered but never scheduled (N = 44, 26%) or scheduled but subsequently cancelled or not kept (N = 31, 18%). While open loops increased after the onset of the COVID-19 pandemic, this difference was not significant within our study period. CONCLUSIONS: Significant numbers of patients presenting to primary care with rectal bleeding fail to undergo recommended workup. The majority either have no procedure ordered, or procedure ordered but never scheduled or cancelled and not kept, suggesting these are important failure modes to target in future interventions. Ensuring reliable ordering and processes for timely scheduling and completion of procedures represent critical areas for improving the diagnostic process for patients with rectal bleeding in primary care.

Completion of Recommended Tests and Referrals in Telehealth vs In-Person Visits.

Importance: Use of telehealth has increased substantially in recent years. However, little is known about whether the likelihood of completing recommended tests and specialty referrals-termed diagnostic loop closure-is associated with visit modality. Objectives: To examine the prevalence of diagnostic loop closure for tests and referrals ordered at telehealth visits vs in-person visits and identify associated factors. Design, Setting, and Participants: In a retrospective cohort study, all patient visits from March 1, 2020, to December 31, 2021, at 1 large urban hospital-based primary care practice and 1 affiliated community health center in Boston, Massachusetts, were evaluated. Main Measures: Prevalence of diagnostic loop closure for (1) colonoscopy referrals (screening and diagnostic), (2) dermatology referrals for suspicious skin lesions, and (3) cardiac stress tests. Results: The study included test and referral orders for 4133 patients (mean [SD] age, 59.3 [11.7] years; 2163 [52.3%] women; 203 [4.9%] Asian, 1146 [27.7%] Black, 2362 [57.1%] White, and 422 [10.2%] unknown or other race). A total of 1151 of the 4133 orders (27.8%) were placed during a telehealth visit. Of the telehealth orders, 42.6% were completed within the designated time frame vs 58.4% of those ordered during in-person visits and 57.4% of those ordered without a visit. In an adjusted analysis, patients with telehealth visits were less likely to close the loop for all test types compared with those with in-person visits (odds ratio, 0.55; 95% CI, 0.47-0.64). Conclusions: The findings of this study suggest that rates of loop closure were low for all test types across all visit modalities but worse for telehealth. Failure to close diagnostic loops presents a patient safety challenge in primary care that may be of particular concern during telehealth encounters.

Urgent referrals from primary care to dermatology for lesions suspicious for skin cancer: patterns, outcomes, and need for systems improvement.

Ideally, urgent dermatology referrals for evaluation of a lesion concerning for skin cancer should be triaged and processed with appropriate urgency by primary care and dermatology, respectively. We performed a retrospective single-institution study by conducting chart reviews of all dermatology referrals designated by primary care as urgent for evaluation of a lesion concerning for skin cancer. We identified 320 referrals placed between January 1 and December 31, 2018. Dermatology encounters for these patients occurred on or before 30 days for 50.6% of referrals and on or after 31 days for 38.4% of referrals, with 10.9% never completed. The percentage of all races excluding whites, non-Hispanic in the delayed appointment group (≥ 31 days) was 15.1% higher (95% CI 5.3-24.9) than in the timely appointment group (≤ 30 days). Similarly, the percentage of non-English languages in the delayed group was 7.1% higher (95% CI 0.5-13.7) than in the timely group. Overall, 15.8% of these referrals yielded diagnoses of malignancy, while 76.8% and 7.4% resulted in benign and pre-malignant diagnoses, respectively. The primary care team documented referral status (i.e., completed, incomplete, or pending) during their subsequent visits with the patients in only 37.5% of these referrals. Our findings demonstrate the need to improve the reliability of urgent referrals to ensure they occur in a timely manner with confirmation of "referral loop" closure at the referring clinician's end.

Analysis of Radiology Report Recommendation Characteristics and Rate of Recommended Action Performance.

Importance: Following up on recommendations from radiologic findings is important for patient care, but frequently there are failures to carry out these recommendations. The lack of reliable systems to characterize and track completion of actionable radiology report recommendations poses an important patient safety challenge. Objectives: To characterize actionable radiology recommendations and, using this taxonomy, track and understand rates of loop closure for radiology recommendations in a primary care setting. Design, Setting, and Participants: Radiology reports in a primary care clinic at a large academic center were redesigned to include actionable recommendations in a separate dedicated field. Manual review of all reports generated from imaging tests ordered between January 1 and December 31, 2018, by primary care physicians that contained actionable recommendations was performed. For this quality improvement study, a taxonomy system that conceptualized recommendations was developed based on 3 domains: (1) what is recommended (eg, repeat a test or perform a different test, specialty referral), (2) specified time frame in which to perform the recommended action, and (3) contingency language qualifying the recommendation. Using this framework, a 2-stage process was used to review patients' records to classify recommendations and determine loop closure rates and factors associated with failure to complete recommended actions. Data analysis was conducted from April to July 2021. Main Outcomes and Measures: Radiology recommendations, time frames, and contingencies. Rates of carrying out vs not closing the loop on these recommendations in the recommended time frame were assessed. Results: A total of 598 radiology reports were identified with structured recommendations: 462 for additional or future radiologic studies and 196 for nonradiologic actions (119 specialty referrals, 47 invasive procedures, and 43 other actions). The overall rate of completed actions (loop closure) within the recommended time frame was 87.4%, with 31 open loop cases rated by quality expert reviewers to pose substantial clinical risks. Factors associated with successful loop closure included (1) absence of accompanying contingency language, (2) shorter recommended time frames, and (3) evidence of direct radiologist communication with the ordering primary care physicians. A clinically significant lack of loop closure was found in approximately 5% of cases. Conclusions and Relevance: The findings of this study suggest that creating structured radiology reports featuring a dedicated recommendations field permits the development of taxonomy to classify such recommendations and determine whether they were carried out. The lack of loop closure suggests the need for more reliable systems.

Variation in Breast Cancer Risk Model Estimates Among Women in Their 40s Seen in Primary Care.

Background: The Gail, Breast Cancer Surveillance Consortium (BCSC), and Tyrer-Cuzick breast cancer risk prediction models are recommended for use in primary care. Calculating breast cancer risk is particularly important for women in their 40s when deciding on mammography, with some guidelines recommending screening for those with 5-year risk similar to women age 50 (≥1.1%). Yet, little is known about risk estimate agreement among models for these women. Materials and Methods: Four hundred nine Boston-area women 40-49 years of age completed a risk questionnaire before a primary care visit to compute their breast cancer risk. The kappa statistic was used to examine when (1) Gail and BCSC agreed on 5-year risk ≥1.1%; (2) Gail estimated 5-year risk ≥1.7% and Tyrer-Cuzick estimated 10-year risk ≥5% (guideline thresholds for recommending prevention medications); and when (3) Gail and Tyrer-Cuzick agreed on lifetime risk ≥20% (threshold for breast MRI using Tyrer-Cuzick). Results: Participant mean age was 44.1 years, 56.7% were non-Hispanic white, and 7.8% had a first-degree relative with breast cancer. Of 266 with breast density information to estimate both Gail and BCSC, the models agreed on 5-year risk being ≥1.1% for 36 women, kappa = 0.34 (95% confidence interval: 0.23-0.45). Gail and Tyrer-Cuzick estimates led to agreement about prevention medications for 8 women, kappa 0.41 (0.20-0.61), and models agreed on lifetime risk ≥20% for 3 women, kappa 0.08 (-0.01 to 0.16). Conclusions: There is weak agreement on breast cancer risk estimates generated by risk models recommended for primary care. Using different models may lead to different clinical recommendations for women in their 40s.

Systems engineering analysis of diagnostic referral closed-loop processes.

BACKGROUND: Closing loops to complete diagnostic referrals remains a significant patient safety problem in most health systems, with 65%-73% failure rates and significant delays common despite years of improvement efforts, suggesting new approaches may be useful. Systems engineering (SE) methods increasingly are advocated in healthcare for their value in studying and redesigning complex processes. OBJECTIVE: Conduct a formative SE analysis of process logic, variation, reliability and failures for completing diagnostic referrals originating in two primary care practices serving different demographics, using dermatology as an illustrating use case. METHODS: An interdisciplinary team of clinicians, systems engineers, quality improvement specialists, and patient representatives collaborated to understand processes of initiating and completing diagnostic referrals. Cross-functional process maps were developed through iterative group interviews with an urban community-based health centre and a teaching practice within a large academic medical centre. Results were used to conduct an engineering process analysis, assess variation within and between practices, and identify common failure modes and potential solutions. RESULTS: Processes to complete diagnostic referrals involve many sub-standard design constructs, with significant workflow variation between and within practices, statistical instability and special cause variation in completion rates and timeliness, and only 21% of all process activities estimated as value-add. Failure modes were similar between the two practices, with most process activities relying on low-reliability concepts (eg, reminders, workarounds, education and verification/inspection). Several opportunities were identified to incorporate higher reliability process constructs (eg, simplification, consolidation, standardisation, forcing functions, automation and opt-outs). CONCLUSION: From a systems science perspective, diagnostic referral processes perform poorly in part because their fundamental designs are fraught with low-reliability characteristics and mental models, including formalised workaround and rework activities, suggesting a need for different approaches versus incremental improvement of existing processes. SE perspectives and methods offer new ways of thinking about patient safety problems, failures and potential solutions.

A Pre-Test-Post-Test Trial of a Breast Cancer Risk Report for Women in Their 40s.

INTRODUCTION: Guidelines recommend individualized breast cancer screening and prevention interventions for women in their 40s. Yet, few primary care clinicians assess breast cancer risk. STUDY DESIGN: Pretest-Posttest trial. SETTING/PARTICIPANTS: Women aged 40-49 years were recruited from one large Boston-based academic primary care practice between July 2017 and April 2019. INTERVENTION: Participants completed a pretest, received a personalized breast cancer risk report, saw their primary care clinician, and completed a posttest. MAIN OUTCOME MEASURES: Using mixed effects models, changes in screening intentions (0-100 scale [0=will not screen to 100=will screen]), mammography knowledge, decisional conflict, and receipt of screening were examined. Analyses were conducted from June 2019 to February 2020. RESULTS: Patient (n=337) mean age was 44.1 (SD=2.9) years, 61.4% were non-Hispanic white, and 76.6% were college graduates; 306 (90.5%) completed follow-up (203 with 5-year breast cancer risk <1.1%). Screening intentions declined from pre- to post-visit (79.3 to 68.0, p<0.0001), especially for women with 5-year risk <1.1% (77.2 to 63.3, p<0.0001), but still favored screening. In the 2 years prior, 37.6% had screening mammography compared with 41.8% over a mean 16 months follow-up (p=0.17). Mammography knowledge increased and decisional conflict declined. Eleven (3.3%) women met criteria for breast cancer prevention medications (ten discussed medications with their clinicians), 22 (6.5%) for MRI (19 discussed MRI with their clinician), and 67 (19.8%) for genetic counseling (47 discussed with the clinician). CONCLUSIONS: Receipt of a personalized breast cancer report was associated with women in their 40s making more-informed and less-conflicted mammography screening decisions and with high-risk women discussing breast cancer prevention interventions with clinicians. TRIAL REGISTRATION: This study is registered at www.clinicaltrials.govNCT03180086.

Nondiagnostic Fine-Needle Aspiration Biopsy of Thyroid Nodules: Outcomes and Determinants.

Background: Nondiagnostic results are common following fine-needle aspiration biopsy (FNAB) of thyroid nodules, but recommendations for the management of these patients vary. We sought to determine the outcomes and predictors of nondiagnostic FNABs in a single-center cohort of patients undergoing thyroid nodule evaluation. Methodology: We identified all first time ultrasound-guided FNABs performed between May 2007 and June 2013 at the Beth Israel Deaconess Medical Center Thyroid Nodule Clinic and examined demographic data, follow-up ultrasounds, repeated FNABs, and histopathologic findings. We examined the likelihood of diagnostic findings and of cancer with increasing numbers of nondiagnostic evaluations with their exact binomial confidence intervals [CIs] and potential predictors of nondiagnostic status using generalized estimating equations. Results: During the six-year period, 2234 unique individuals underwent ultrasound-guided FNAB of a thyroid nodule. The probability of obtaining a diagnostic biopsy declined from 84.4% [95% CI 82.8-85.8%] for initial FNABs to 57.6% [CI 50.8-64.2%] for the first re-FNAB and further to 42.4% [CI 25.5-60.8%] for second re-FNABs. Adjusted risk of nondiagnostic FNAB strongly increased with increasing numbers of previous biopsies and was also higher among whites. The overall rate of diagnosis of malignancy after a nondiagnostic FNAB was 8.1% [CI 4.2-13.7%] and was similar regardless of the number of previous nondiagnostic aspirations. Conclusion: Following an initial nondiagnostic FNAB, the probability of yielding a diagnostic result declines with each sequential repeat FNAB. Nonetheless, a tangible possibility of malignancy remains even after repeated nondiagnostic FNABs.

Building a Quality Management System for a Thyroid Nodule Clinic.

BACKGROUND: There are few published quality metrics relevant to fine-needle aspirations (FNA) of the thyroid and endocrinology. With the development of a Thyroid Nodule Clinic within an academic practice, the Division of Endocrinology, in collaboration with the Department of Medicine Quality Improvement Team, established a system to monitor the results and follow-up of thyroid biopsies to ensure patient safety and to prevent adverse clinical outcomes attributable to delayed or incomplete follow-up. METHODS: All FNA performed are identified using billing data from the Thyroid Nodule Clinic. Results were followed using the Beth Israel Deaconess Online Medical Record (OMR) system, and information is collected on documented follow-up plan and actions taken. Missing data are flagged for review. Over the reporting period, the monitoring process and categories were modified to account for adoption of the Bethesda reporting criteria and implementation of gene expression classifier testing. Specific workflow plans were developed for each cytopathologic classification. RESULTS: Between July 2007 and June 2014, 3895 FNAs were performed. The quality improvement tracking process found that 3856/3895 (99%) biopsy cases had documented follow-up since initiation of the project. CONCLUSION: This monitoring process has ensured quality patient care, with confidence that patients having FNAs are receiving documented necessary follow-up for treatment of their nodular conditions. This system serves as a potential model for others to use in their endocrine practice in managing the results of thyroid nodule biopsies.

The Effects of Resident Peer- and Self-Chart Review on Outpatient Laboratory Result Follow-up.

PURPOSE: Performing and teaching appropriate follow-up of outpatient laboratory results (LRs) is a challenge. The authors tested peer-review among residents as a potentially valuable intervention. METHOD: Investigators assigned residents to perform self-review (n = 27), peer-review (n = 21), or self- + peer-review (n = 30) of outpatient charts. They also compared residence performance with that of historical controls (n = 20). In September 2012, residents examined 10 LRs from April 2012 onward. A second review in November 2012 ascertained whether performing chart review improved residents' practice behaviors. RESULTS: Initially, the least-square (LS) mean number of LRs without documentation of follow-up per resident in the self-, peer-, and self- + peer-review group was, respectively, 0.5 (SD 1.0), 1.0 (SD 1.7), and 0.9 (SD 1.3), and post intervention, this was 1.0 (SD 0.2), 0.3 (SD 0.2), and 0.6 (SD 0.2) (self- versus peer-review P = .03). Initially the LS mean follow-up time per resident in the self-, peer-, and self- + peer-review group was, respectively, 4.2 (SD 1.2), 6.9 (SD 1.4), and 5.9 (SD 1.2) days, and after the intervention, LS mean time was 5.0 (SD 0.5), 2.5 (SD 0.6), and 3.9 (SD 0.5) days (self- versus peer-review P < .01). Self-review was not associated with significant improvements in practice. CONCLUSIONS: In this comparison of self- and peer-review, only residents who performed peer-review demonstrated significant improvements in their documentation practices. These findings support the use of resident peer-review in improving LR follow-up, and potentially, in other, broader resident quality improvement initiatives.

Incidentally detected lung nodules: clinical predictors of adherence to Fleischner Society surveillance guidelines.

OBJECTIVE: The objective of this study was to determine adherence to incidentally detected lung nodule computed tomographic (CT) surveillance recommendations and identify demographic and clinical factors that increase the likelihood of CT surveillance. MATERIALS AND METHODS: A total of 419 patients with incidentally detected lung nodules were included. Recorded data included patient demographic, radiologic, and clinical characteristics and outcomes at a 4-year follow-up. Multivariate logistic regression models determined the factors associated with likelihood of recommended CT surveillance. RESULTS: At least 1 recommended surveillance chest CT was performed on 48% of the patients (148/310). Computed tomographic result communication to the patient (odds ratio [OR], 2.2; P = 0.006; confidence interval [CI], 1.3-4.0) or to the referring physician (OR, 2.8; P = 0.001; CI, 1.7-4.5) and recommendation of a specific surveillance time interval (OR, 1.7; P = 0.023; CI, 1.08-2.72) increased the likelihood of surveillance. Other demographic, radiologic, and clinical factors did not influence surveillance. CONCLUSIONS: Documented physician and patient result communication as well as the recommendation of a specific surveillance time interval increased the likelihood of CT surveillance of incidentally detected lung nodules.

Review of quality measures of the most integrated health care settings for children and the need for improved measures: recommendations for initial core measurement set for CHIPRA.

OBJECTIVE: To identify, assess, and make recommendations for inclusion of measures that assess the domain of "most integrated health care setting," with a specific focus on measures of the medical home, one particular mechanism for integrating care, to identify gaps in measurement; and to make recommendations for new measure development. METHODS: We developed a conceptual framework for care integration and reviewed literature on measures assessing the presence and quality of the medical home to determine their validity, reliability, and feasibility as a proxy for care integration. RESULTS: We identified 2 broad approaches to assessing the extent to which patients receive care that fulfills the aims of the medical home: 1) organizational assessment of practice systems and processes thought associated with achieving these desired aims (viz, the National Committee for Quality Assurance Physician Practice Connections-Patient Centered Medical Home measure and the Medical Home Index, and 2) direct assessment by patients/families of their experience of care in targeted dimensions. Based on concerns about the absence of reliability data and the feasibility of applying the practice audit/self-assessment approach on a population level for the purpose of state reporting, as well as the limited data linking performance on the specific measures with important child outcomes, we did not recommend any of the measures of organizational assessments of practice systems for inclusion in the core set as an indicator of care integration. In contrast, measures of the medical home based on items from the National Survey of Child Health on a population level of or the Consumer Assessment of Healthcare Providers and Systems for practice- and state-level assessment are more feasible, have known reliability and performance characteristics, and more closely reflect the aims of the medical home, including care integration. CONCLUSIONS: Measures of health care integration as captured by the experience of care in a medical home can best be assessed for state-level performance through patient/family experience surveys. Better measures of care integration, care coordination, and integration of mental, developmental, and physical health into a comprehensive care system are high-priority topics for measure development.

Measuring patient and family experiences of health care for children.

BACKGROUND: The Institute of Medicine considers patient centeredness a core dimension of quality. Several patient/family surveys exist to assess pediatric health care. The Children's Health Insurance Program Reauthorization Act mandates strengthening quality measurement for children, including for patient/family experience of care. OBJECTIVES: The aim of this study was to determine what instruments exist for measuring patient/family experience of pediatric health care and which should be included in the core measurement set for assessing Medicaid and the Children's Health Insurance Program (CHIP) programs; to identify gaps in measurement; and to provide recommendations for measure development. METHODS: We developed a conceptual framework for measuring patient/family experience of care. We conducted a review of national measure clearinghouses and of the literature to assess validity, reliability, and feasibility of existing measures, and how these measures address the conceptual framework. RESULTS: We found valid and reliable instruments for measuring patient/family experience of care include the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) instruments, Promoting Healthy Development Survey (PHDS), Young Adult Health Care Survey (YAHCS), and the National Research Corporation Picker Pediatric Inpatient Survey (NRC Picker). We identified the need for matching patients with providers and groups as a barrier for widespread use of the CAHPS® pediatric clinician & group instrument. CONCLUSIONS: We recommended to the National Advisory Council for Healthcare Research and Quality Subcommittee on Children's Healthcare Quality Measures for Medicaid and Child Health Insurance Programs (SNAC) the CAHPS® Child Medicaid 4.0 and pediatric Clinician & Group Survey for inclusion in the initial recommended list of core measures for voluntary use by Medicaid and CHIP. The Clinician and Group Survey was not included in the list posted for public comment due to concerns at that time (December 2009) about feasibility. We also recommended that development of a child version of the CAHPS® behavioral and mental health survey now used in the adult population and of a pediatric hospital CAHPS® measure be considered high priorities for development in the next phase of Children's Health Insurance Program Reauthorization Act measurement activity. This phase should also explore methods to increase response rates and lower costs of obtaining consumer feedback.