An Expanded Approach to the Ascertainment of Children and Youth With Special Health Care Needs.

OBJECTIVE: To describe the prevalence, characteristics, and health-related outcomes of children with diagnosed health conditions and functional difficulties who do not meet criteria for having a special health care need based on the traditional scoring of the Children with Special Health Care Needs (CSHCN) Screener. METHODS: Data come from the 2016 to 2021 National Survey of Children's Health (n = 225 443). Child characteristics and health-related outcomes were compared among 4 mutually exclusive groups defined by CSHCN Screener criteria and the presence of both conditions and difficulties. RESULTS: Among children who do not qualify as children and youth with special health care needs (CYSHCN) on the CSHCN Screener, 6.8% had ≥1 condition and ≥1 difficulty. These children were more likely than CYSHCN to be younger, female, Hispanic, uninsured, privately insured, living in a household with low educational attainment, have families with more children and a primary household language other than English. After adjustment, non-CYSHCN with ≥1 conditions and ≥1 difficulty were less likely than CYSHCN, but significantly more likely than other non-CYSHCN, to have ≥2 emergency department visits, have unmet health care needs, not meet flourishing criteria, live in families that experienced child health-related employment impacts and frustration accessing services. Including these children in the calculation of CYSHCN prevalence increases the national estimate from 19.1% to 24.6%. CONCLUSIONS: Approximately 4 million children have both a diagnosed health condition and functional difficulties but are not identified as CYSHCN. An expanded approach to identify CYSHCN may better align program and policy with population needs.

Scaling Family Voices and Engagement to Measure and Improve Systems Performance and Whole Child Health: Progress and Lessons from the Child and Adolescent Health Measurement Initiative.

BACKGROUND: The 1997 legislation authorizing the United States Child Health Insurance Program sparked progress to measure and publicly report on children's healthcare services quality and system performance. To meet the moment, the national Child and Adolescent Health Measurement Initiative (CAHMI) public-private collaboration was launched to put families at the center of defining, measuring and using healthcare performance information to drive improved services quality and outcomes. METHODS: Since 1996 the CAHMI followed an intentional path of collaborative action to (1) articulate shared goals for child health and advance a comprehensive, life-course and outcomes-based healthcare performance measurement and reporting framework; (2) collaborate with families, providers, payers and government agencies to specify, validate and support national, state and local use of dozens of framework aligned measures; (3) create novel public-facing digital data query, collection and reporting tools that liberate data findings for use by families, providers, advocates, policymakers, the media and researchers (Data Resource Center, Well Visit Planner); and (4) generate field building research and systems change agendas and frameworks (Prioritizing Possibilities, Engagement In Action) to catalyze prevention, flourishing and healing centered, trauma-informed, whole child and family engaged approaches, integrated systems and supportive financing and policies. CONCLUSIONS: Lessons call for a restored, sustainable family and community engaged measurement infrastructure, public activation campaigns, and undeterred federal, state and systems leadership that implement policies to incentivize, resource, measure and remove barriers to integrated systems of care that scale family engagement to equitably promote whole child, youth and family well-being. Population health requires effective family engagement.

Social and Relational Health Risks and Common Mental Health Problems Among US Children: The Mitigating Role of Family Resilience and Connection to Promote Positive Socioemotional and School-Related Outcomes.

Nearly 70% (67.6%) of US children with mental, emotional, and behavioral problems (MEB) experienced significant social health risks (SHR) and/or relational health risks (RHR). Shifts are needed in child mental health promotion, prevention, diagnosis, and treatment to address both RHR and SHR. Public health approaches are needed that engage families, youth, and the range of child-serving professionals in collaborative efforts to prevent and mitigate RHR and SHR and promote positive mental health at a community level. Building strong family resilience and connection may improve SR and, in turn, academic and social outcomes among all US children with or without MEB.

Family Resilience And Connection Promote Flourishing Among US Children, Even Amid Adversity.

The outcome of flourishing and its predictors have not been well documented among US children, especially those who face adversity. Using data for 2016 and 2017 from the National Survey of Children's Health, we determined the prevalence and predictors of flourishing among US children ages 6-17. A three-item index included indicators of flourishing: children's interest and curiosity in learning new things, persistence in completing tasks, and capacity to regulate emotions. The national prevalence of flourishing was 40.3 percent (29.9-45.0 percent across states). At each level of adverse childhood experiences, household income, and special health care needs, the prevalence of flourishing increased in a graded fashion with increasing levels of family resilience and connection. Across the sectors of health care, education, and human services, evidence-based programs and policies to increase family resilience and connection could increase flourishing in US children, even as society addresses remediable causes of childhood adversity.

At the intersection of chronic disease, disability and health services research: A scoping literature review.

BACKGROUND: There is a concerted effort underway to evaluate and reform our nation's approach to the health of people with ongoing or elevated needs for care, particularly persons with chronic conditions and/or disabilities. OBJECTIVE: This literature review characterizes the current state of knowledge on the measurement of chronic disease and disability in population-based health services research on working age adults (age 18-64). METHODS: Scoping review methods were used to scan the health services research literature published since the year 2000, including medline, psycINFO and manual searches. The guiding question was: "How are chronic conditions and disability defined and measured in studies of healthcare access, quality, utilization or cost?" RESULTS: Fifty-five studies met the stated inclusion criteria. Chronic conditions were variously defined by brief lists of conditions, broader criteria-based lists, two or more (multiple) chronic conditions, or other constructs. Disability was generally assessed through ADLs/IADLs, functional limitations, activity limitations or program eligibility. A smaller subset of studies used information from both domains to identify a study population or to stratify it by subgroup. CONCLUSIONS: There remains a divide in this literature between studies that rely upon diagnostically-oriented measures and studies that instead rely on functional, activity or other constructs of disability to identify the population of interest. This leads to wide ranging differences in population prevalence and outcome estimates. However, there is also a growing effort to develop methods that account for the overlap between chronic disease and disability and to "segment" this heterogeneous population into policy or practice relevant subgroups.

Introducing the Adults with Chronic Healthcare Needs (ACHCN) definition and screening instrument: Rationale, supporting evidence and testing.

BACKGROUND: Among working age adults in the United States, there is a large, heterogeneous population that requires ongoing and elevated levels of healthcare and related services. At present, there are conflicting approaches to the definition and measurement of this population in health services research. OBJECTIVE: An expert panel was convened by the National Institutes of Health with the objective of developing a population-level definition of Adults with Chronic Healthcare Needs (ACHCN). In addition, the panel developed a screening instrument and methods for its use in health surveys to identify and stratify the population consistently. METHODS: The panel employed multiple methods over the course of the project, including scoping literature reviews, quantitative analyses from national data sources and cognitive testing. RESULTS: The panel defined the ACHCN population as "Adults (age 18-65) with [1] ongoing physical, cognitive, or mental health conditions or difficulties functioning who [2] need health or related support services of a type or amount beyond that needed by adults of the same sex and similar age." The screener collects information on chronic health conditions, functional difficulties, and elevated use of or unmet need for healthcare services. CONCLUSIONS: Adapted from the Maternal and Child Health Bureau definition that identifies Children with Special Healthcare Needs, aligned with the ACS-6 disability measure, and consistent with the HHS Multiple Chronic Condition Framework, this definition and screener provide the research community with a common denominator for the identification of ACHCN.

Prioritizing Possibilities for Child and Family Health: An Agenda to Address Adverse Childhood Experiences and Foster the Social and Emotional Roots of Well-being in Pediatrics.

OBJECTIVE: A convergence of theoretical and empirical evidence across many scientific disciplines reveals unprecedented possibilities to advance much needed improvements in child and family well-being by addressing adverse childhood experiences (ACEs), promoting resilience, and fostering nurturance and the social and emotional roots of healthy child development and lifelong health. In this article we synthesize recommendations from a structured, multiyear field-building and research, policy, and practice agenda setting process to address these issues in children's health services. METHODS: Between Spring of 2013 and Winter of 2017, the field-building and agenda-setting process directly engaged more than 500 individuals and comprised 79 distinct agenda-setting and field-building activities and processes, including: 4 in-person meetings; 4 online crowdsourcing rounds across 10 stakeholder groups; literature and environmental scans, publications documenting ACEs, resilience, and protective factors among US children, and commissioning of this special issue of Academic Pediatrics; 8 in-person listening forums and 31 educational sessions with stakeholders; and a range of action research efforts with emerging community efforts. Modified Delphi processes and grounded theory methods were used and iterative and structured synthesis of input was conducted to discern themes, priorities, and recommendations. RESULTS: Participants discerned that sufficient scientific findings support the formation of an applied child health services research and policy agenda. Four overarching priorities for the agenda emerged: 1) translate the science of ACEs, resilience, and nurturing relationships into children's health services; 2) cultivate the conditions for cross-sector collaboration to incentivize action and address structural inequalities; 3) restore and reward for promoting safe and nurturing relationships and full engagement of individuals, families, and communities to heal trauma, promote resilience, and prevent ACEs; and 4) fuel "launch and learn" research, innovation, and implementation efforts. Four research areas arose as central to advancing these priorities in the short term. These are related to: 1) family-centered clinical protocols, 2) assessing effects on outcomes and costs, 3) capacity-building and accountability, and 4) role of provider self-care to quality of care. Finally, we identified 16 short-term actions to leverage existing policies, practices, and structures to advance agenda priorities and research priorities. CONCLUSIONS: Efforts to address the high prevalence and negative effects of ACEs on child health are needed, including widespread and concrete understanding and strategies to promote awareness, resilience, and safe, stable, nurturing relationships as foundational to healthy child development and sustainable well-being throughout life. A paradigm-shifting evolution in individual, organizational, and collective mindsets, policies, and practices is required. Shifts will emphasize the centrality of relationships and regulation of emotion and stress to brain development as well as overall health. They will elevate relationship-centered methods to engage individuals, families, and communities in self-care related to ACEs, stress, trauma, and building the resilience and nurturing relationships science has revealed to be at the root of well-being. Findings reflect a palpable hope for prevention, mitigation, and healing of individual, intergenerational, and community trauma associated with ACEs and provide a road map for doing so.

Methods to Assess Adverse Childhood Experiences of Children and Families: Toward Approaches to Promote Child Well-being in Policy and Practice.

BACKGROUND: Advances in human development sciences point to tremendous possibilities to promote healthy child development and well-being across life by proactively supporting safe, stable and nurturing family relationships (SSNRs), teaching resilience, and intervening early to promote healing the trauma and stress associated with disruptions in SSNRs. Assessing potential disruptions in SSNRs, such as adverse childhood experiences (ACEs), can contribute to assessing risk for trauma and chronic and toxic stress. Asking about ACEs can help with efforts to prevent and attenuate negative impacts on child development and both child and family well-being. Many methods to assess ACEs exist but have not been compared. The National Survey of Children's Health (NSCH) now measures ACEs for children, but requires further assessment and validation. METHODS: We identified and compared methods to assess ACEs among children and families, evaluated the acceptability and validity of the new NSCH-ACEs measure, and identified implications for assessing ACEs in research and practice. RESULTS: Of 14 ACEs assessment methods identified, 5 have been used in clinical settings (vs public health assessment or research) and all but 1 require self or parent report (3 allow child report). Across methods, 6 to 20 constructs are assessed, 4 of which are common to all: parental incarceration, domestic violence, household mental illness/suicide, household alcohol or substance abuse. Common additional content includes assessing exposure to neighborhood violence, bullying, discrimination, or parental death. All methods use a numeric, cumulative risk scoring methodology. The NSCH-ACEs measure was acceptable to respondents as evidenced by few missing values and no reduction in response rate attributable to asking about children's ACEs. The 9 ACEs assessed in the NSCH co-occur, with most children with 1 ACE having additional ACEs. This measure showed efficiency and confirmatory factor analysis as well as latent class analysis supported a cumulative risk scoring method. Formative as well as reflective measurement models further support cumulative risk scoring and provide evidence of predictive validity of the NSCH-ACEs. Common effects of ACEs across household income groups confirm information distinct from economic status is provided and suggest use of population-wide versus high-risk approaches to assessing ACEs. CONCLUSIONS: Although important variations exist, available ACEs measurement methods are similar and show consistent associations with poorer health outcomes in absence of protective factors and resilience. All methods reviewed appear to coincide with broader goals to facilitate health education, promote health and, where needed, to mitigate the trauma, chronic stress, and behavioral and emotional sequelae that can arise with exposure to ACEs. Assessing ACEs appears acceptable to individuals and families when conducted in population-based and clinical research contexts. Although research to date and neurobiological findings compel early identification and health education about ACEs in clinical settings, further research to guide use in pediatric practice is required, especially as it relates to distinguishing ACEs assessment from identifying current family psychosocial risks and child abuse. The reflective as well as formative psychometric analyses conducted in this study confirm use of cumulative risk scoring for the NSCH-ACEs measure. Even if children have not been exposed to ACEs, assessing ACEs has value as an educational tool for engaging and educating families and children about the importance of SSNRs and how to recognize and manage stress and learn resilience.

Well-Child Care Redesign: A Mixed Methods Analysis of Parent Experiences in the PARENT Trial.

BACKGROUND: Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT), is a well-child care (WCC) model that has demonstrated effectiveness in improving the receipt of comprehensive WCC services and reducing emergency department utilization for children aged 0 to 3 in low-income communities. PARENT relies on a health educator ("parent coach") to provide WCC services; it utilizes a Web-based previsit prioritization/screening tool (Well-Visit Planner) and an automated text message reminder/education service. We sought to assess intervention feasibility and acceptability among PARENT trial intervention participants. METHODS: Intervention parents completed a survey after a 12-month study period; a 26% random sample of them were invited to participate in a qualitative interview. Interviews were recorded, transcribed, and analyzed using the constant comparative method of qualitative analysis; survey responses were analyzed using bivariate methods. RESULTS: A total of 115 intervention participants completed the 12-month survey; 30 completed a qualitative interview. Nearly all intervention participants reported meeting with the coach, found her helpful, and would recommend continuing coach-led well visits (97-99%). Parents built trusting relationships with the coach and viewed her as a distinct and important part of their WCC team. They reported that PARENT well visits more efficiently used in-clinic time and were comprehensive and family centered. Most used the Well-Visit Planner (87%), and found it easy to use (94%); a minority completed it at home before the visit (18%). Sixty-two percent reported using the text message service; most reported it as a helpful source of new information and a reinforcement of information discussed during visits. CONCLUSIONS: A parent coach-led intervention for WCC for young children is a model of WCC delivery that is both acceptable and feasible to parents in a low-income urban population.

A Parent Coach Model for Well-Child Care Among Low-Income Children: A Randomized Controlled Trial.

OBJECTIVE: The goal of this study was to examine the effects of a new model for well-child care (WCC), the Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT), on WCC quality and health care utilization among low-income families. METHODS: PARENT includes 4 elements designed by using a stakeholder-engaged process: (1) a parent coach (ie, health educator) to provide anticipatory guidance, psychosocial screening and referral, and developmental/behavioral guidance and screening at each well-visit; (2) a Web-based tool for previsit screening; (3) an automated text message service to provide periodic, age-specific health messages to families; and (4) a brief, problem-focused encounter with the pediatric clinician. The Promoting Healthy Development Survey-PLUS was used to assess receipt of recommended WCC services at 12 months' postenrollment. Intervention effects were examined by using bivariate analyses. RESULTS: A total of 251 parents with a child aged ≤12 months were randomized to receive either the control (usual WCC) or the intervention (PARENT); 90% completed the 12-month assessment. Mean child age at enrollment was 4.5 months; 64% had an annual household income less than $20,000. Baseline characteristics for the intervention and control groups were similar. Intervention parents scored higher on all preventive care measures (anticipatory guidance, health information, psychosocial assessment, developmental screening, and parental developmental/behavioral concerns addressed) and experiences of care measures (family-centeredness, helpfulness, and overall rating of care). Fifty-two percent fewer intervention children had ≥2 emergency department visits over the 12-month period. There were no significant differences in WCC or sick visits/urgent care utilization. CONCLUSIONS: A parent coach-led model for WCC may improve the receipt of comprehensive WCC for low-income families, and it may potentially lead to cost savings by reducing emergency department utilization.

A new performance measurement system for maternal and child health in the United States.

OBJECTIVE: The Title V Maternal and Child Health (MCH) Block Grant is the linchpin for US MCH services. The first national performance measures (NPMs) for MCH were instituted in 1997. Changing trends in MCH risk factors, outcomes, health services, data sources, and advances in scientific knowledge, in conjunction with budgetary constraints led the Maternal and Child Health Bureau (MCHB) to design a new performance measurement system. METHODS: A workgroup was formed to develop a new system. The following guiding principles were used: (1) Afford States more flexibility and reduce the overall reporting burden; (2) Improve accountability to better document Title V's impact; (3) Develop NPMs that encompass measures in: maternal and women's health, perinatal health, child health, children with special health care needs, adolescent health, and cross-cutting areas. RESULTS: A three-tiered performance measurement system was proposed with national outcome measures (NOMs), NPMs and evidence-based/informed strategy measures (ESMs). NOMs are the ultimate goals that MCHB and States are attempting to achieve. NPMs are measures, generally associated with processes or programs, shown to affect NOMs. ESMs are evidence-based or informed measures that each State Title V program develops to affect the NPMs. There are 15 NPMs from which States select eight, with at least one from each population area. MCHB will provide the data for the NOMs and NPMs, when possible. CONCLUSIONS: The new performance measurement system increases the flexibility and reduces the reporting burden for States by allowing them to choose 8 NPMs to target, and increases accountability by having States develop actionable ESMs. SIGNIFICANCE: The new national performance measure framework for maternal and child health will allow States more flexibility to address their areas of greatest need, reduce their data reporting burden by having the Maternal and Child Health Bureau provide data for the National Outcome and Performance Measures, yet afford States the opportunity to develop measurable strategies to address their selected performance measures.

Taking stock of the CSHCN screener: a review of common questions and current reflections.

Since 2000, the Children with Special Health Care Needs (CSHCN) Screener (CS) has been widely used nationally, by states, and locally as a standardized and brief survey-based method to identify populations of children who experience chronic physical, mental, behavioral, or other conditions and who also require types and amounts of health and related services beyond those routinely used by children. Common questions about the CS include those related to its development and uses; its conceptual framework and potential for under- or overidentification; its ability to stratify CSHCN by complexity of service needs and daily life impacts; and its potential application in clinical settings and comparisons with other identification approaches. This review recaps the development, design, and findings from the use of the CS and synthesizes findings from studies conducted over the past 13 years as well as updated findings on the CS to briefly address the 12 most common questions asked about this tool through technical assistance provided regarding the CS since 2001. Across a range of analyses, the CS consistently identifies a subset of children with chronic conditions who need or use more than a routine type or amount of medical- and health-related services and who share common needs for health care, including care coordination, access to specialized and community-based services, and enhanced family engagement. Scoring algorithms exist to stratify CSHCN by complexity of needs and higher costs of care. Combining CS data with clinical diagnostic code algorithms may enhance capacity to further identify meaningful subgroups. Clinical application is most suited for identifying and characterizing populations of patients and assessing quality and system improvement impacts for children with a broad range of chronic conditions. Other clinical applications require further implementation research. Use of the CS in clinical settings is limited because integration of standardized patient-reported health information is not yet common practice in most settings or in electronic health records. The CS continues to demonstrate validity as a non-condition-specific, population-based tool that addresses many of the limits of condition or diagnosis checklists, including the relatively low prevalence of many individual conditions and substantial within-diagnosis variations and across-diagnoses similarities in health service needs, functioning, and quality of care.

Assessing systems quality in a changing health care environment: the 2009-10 national survey of children with special health care needs.

To provide a national, population-based assessment of the quality of the health care system for children and youth with special health care needs using a framework of six health care system quality indicators. 49,242 interviews with parents of children with special health care needs from the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN) were examined to determine the extent to which CSHCN had access to six quality indicators of a well-functioning system of services. Criteria for determining access to each indicator were established and applied to the survey data to estimate the proportion of CSHCN meeting each quality indicator by socio-demographic status and functional limitations. 17.6% of CSHCN received care consistent with all six quality indicators. Results for each component of the system quality framework ranged from a high of 70.3% of parents reporting that they shared decision-making with healthcare providers to a low of 40% of parents reporting receipt of services needed for transition to adult health care. Attainment rates were lower for CSHCN of minority racial and ethnic groups, those residing in households where English was not the primary language, those in lower income households, and those most impacted by their health condition. Only a small proportion of CSHCN receive all identified attributes of a high-quality system of services. Moreover, significant disparities exist whereby those most impacted by their conditions and those in traditionally disadvantaged groups are served least well by the current system. A small proportion of CSHCN appear to remain essentially outside of the system, having met few if any of the elements studied.

Adverse childhood experiences: assessing the impact on health and school engagement and the mitigating role of resilience.

The ongoing longitudinal Adverse Childhood Experiences Study of adults has found significant associations between chronic conditions; quality of life and life expectancy in adulthood; and the trauma and stress associated with adverse childhood experiences, including physical or emotional abuse or neglect, deprivation, or exposure to violence. Less is known about the population-based epidemiology of adverse childhood experiences among US children. Using the 2011-12 National Survey of Children's Health, we assessed the prevalence of adverse childhood experiences and associations between them and factors affecting children's development and lifelong health. After we adjusted for confounding factors, we found lower rates of school engagement and higher rates of chronic disease among children with adverse childhood experiences. Our findings suggest that building resilience-defined in the survey as "staying calm and in control when faced with a challenge," for children ages 6-17-can ameliorate the negative impact of adverse childhood experiences. We found higher rates of school engagement among children with adverse childhood experiences who demonstrated resilience, as well as higher rates of resilience among children with such experiences who received care in a family-centered medical home. We recommend a coordinated effort to fill knowledge gaps and translate existing knowledge about adverse childhood experiences and resilience into national, state, and local policies, with a focus on addressing childhood trauma in health systems as they evolve during ongoing reform.

Family impacts among children with autism spectrum disorder: the role of health care quality.

OBJECTIVE: To compare health care quality and family employment and financial impacts among children with special health care needs (CSHCN) with autism spectrum disorder (CSHCN + ASD), CSHCN with functional limitations (CSHCN + FL), and CSHCN lacking these conditions (other CSHCN); to test whether high health care quality was associated with reduced family impacts among CSHCN + ASD. METHODS: Data from the 2009-2010 National Survey of CSHCN were used to compare 3025 CSHCN + ASD, 6505 CSHCN + FL, and 28,296 other CSHCN. Weighted multivariate logistic regression analyses examined 6 age-relevant, federally defined health care quality indicators and 5 family financial and employment impact indicators. Two composite measures were additionally used: 1) receipt of care that met all age-relevant quality indicators; and 2) had ≥ 2 of the 5 adverse family impacts. RESULTS: Across all health care quality indicators, CSHCN + ASD fared poorly, with only 7.4% meeting all age-relevant indicators. CSHCN + ASD had worse health care quality than other CSHCN, including CSHCN + FL. CSHCN + ASD also had high rates of adverse family impact, with over half experiencing ≥ 2 adverse impacts. Rates of adverse family impact were higher in CSHCN + ASD than other CSHCN, including CSHCN + FL. Among CSHCN + ASD, those whose health care that met federal quality standards were less likely to have multiple adverse family impacts than CSHCN + ASD whose health care did not meet federal quality standards. CONCLUSIONS: CSHCN + ASD are more prone to experience poor health care quality and family impacts than other CSHCN, even CSHCN + FL. Receipt of care meeting federal quality standards may potentially lessen adverse family impacts for CSHCN + ASD.

Optimizing health and health care systems for children with special health care needs using the life course perspective.

To date, life course research in maternal and child health has largely focused on elucidating fetal and early life influences on adult health and less on promoting the health of children with special health care needs (CSHCN). Consideration of life course theory (LCT) for CSHCN is especially important given their increasing prevalence and comorbidity, their disproportionate vulnerability to weaknesses or instability in the health care system, and the growing evidence linking child and adult health and quality of life. In this commentary we seek to advance the consideration of LCT for CSHCN. We (1) briefly summarize key issues and the importance of a life course approach for CSHCN; (2) present illustrative findings from population-based cross-sectional data that serve to generate hypotheses that can be more rigorously examined when population-based longitudinal data become available; and (3) discuss the application of life course principles as a driving force in the continued implementation and improvement of integrated systems of care for CSHCN.

Development of the adult and child complementary medicine questionnaires fielded on the National Health Interview Survey.

The 2002, 2007, and 2012 complementary medicine questionnaires fielded on the National Health Interview Survey provide the most comprehensive data on complementary medicine available for the United States. They filled the void for large-scale, nationally representative, publicly available datasets on the out-of-pocket costs, prevalence, and reasons for use of complementary medicine in the U.S. Despite their wide use, this is the first article describing the multi-faceted and largely qualitative processes undertaken to develop the surveys. We hope this in-depth description enables policy makers and researchers to better judge the content validity and utility of the questionnaires and their resultant publications.