“Good Practices” in Pediatric Clinical Care for Disorders/Differences of Sex Development

Abstract

Purpose:

To define, benchmark, and publicize elements of quality care (i.e., “good practices”) for pediatric patients with disorders/differences of sex development (DSD).

Methods:

Principles of quality care were identified by literature review; consensus exists for 11 good practices and adherence was evaluated through online survey of 21 North American clinical sites.

Results:

Strong uptake was observed for many practices, particularly specialty participation (n ≥17 of 21 sites for most core specialties); point of contact (n =18); expertise in gender dysphoria/dissatisfaction (n =20); and DSD-specific continuing medical education (n =18). Greater variability was apparent for frequency of peer support referrals (n =12 universally practiced); standardized questionnaires for routine assessment of psychosocial adaptation (n =13) and gender development (n =10); consistently clarifying patient/family values in decision-making (n =15); genital exam protocols that exclude trainee education as primary reason (n =15); and internal patient-tracking efforts (n =5 to 10 of 20 sites).

Conclusion:

This study employed a novel approach to designate DSD good practices and identified areas of consistency and variation in these DSD clinical practices. Good practice benchmarking facilitates quality assessment within and across sites, promotes continuous improvement, and empowers stakeholders in locating and delivering high quality care.

Introduction

Disorders/differences of sex development (DSD) encompass a wide range of congenital conditions in which development of chromosomal, gonadal, and/or anatomical sex is atypical [1]. Clinical management of DSD¹ is complex, controversial, and hindered by a paucity of clinical practice guidelines (CPGs). CPGs are “statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options” [2, p. 15]. CPGs for conditions under the DSD umbrella are currently limited to congenital adrenal hyperplasia [3] and Turner syndrome [4]. To address the remaining gaps, stakeholders have published a variety of guidance documents for providers, patients, and their families over the past approximately 15 years. Notwithstanding these efforts, the field still lacks clear, measurable recommendations for overarching aspects of care delivery.

“Good practices” are recommendations understood to accomplish “substantially more good than harm” [5, p. 597]. The supporting evidence for good practices cannot or should not be graded as are elements of CPG. Rather, they “typically represent situations in which a large body of indirect evidence … strongly supports the net benefit of the recommended action” [5, p. 598]. Good practices reflect principles of care delivery not readily or reasonably interrogated with traditional studies (e.g., randomized clinical trials). While the merits of a given good practice should by definition be fairly obvious, defining and benchmarking good practices is a valuable undertaking that promotes consistency, dialog, and continuous improvement across clinical sites.

We describe here findings from a survey that assessed the degree of integration of 11 good practices at healthcare sites delivering pediatric DSD clinical services in North America. This work was performed in collaboration with Accord Alliance, a non-profit organization interested in improving the quality of care and outcomes for patients with DSD and their families [6]. The survey represents the first cycle of findings in what is intended to be an ongoing quality improvement (QI) initiative in DSD care, particularly in the United States (US). This stage of the work focuses on process measures as reported by providers, though future incorporation of outcome measures and the patient perspective will be imperative to continuous, meaningful QI [7].

Materials and Methods

Participants

US-based pediatric services offering coordinated care for patients with DSD were eligible for inclusion. One site in Canada was included in recruitment due to frequent nomination. Of note, there is no firm age at which individuals, particularly those with chronic health conditions, transition from pediatric to adult care in the US, though this process commonly occurs between age 18 and the mid-20s [8]. Targeted sites included those approached in an earlier survey of DSD clinical practices [9] in addition to sites identified by an internet search of clinical websites and by nomination from board members of Accord Alliance. Sites were not required to have any particular clinical structure (e.g., multidisciplinary clinic). There were no exclusion criteria based on years in service, number of patients seen, or specialties represented.

In total, 45 clinical sites were targeted for recruitment. Twenty-one (21/45, 47%) completed the survey, 23 did not respond to the invitation, and one declined. Ten sites (48%) elected to be identified by name with their site-specific results on the Accord Alliance website while the other 11 (52%) chose to be identified by pseudonym.

Procedures

Recruitment

As an initial step, sites were contacted by phone and/or email to identify an appropriate contact person, defined as someone involved in DSD care and in a position to coordinate responses from all relevant providers at that site. Unresponsive sites were contacted at least twice. A recruitment email with further study information and a unique survey link was then sent to the confirmed or presumed team representative. A single survey response was requested per site. A PDF of the survey (Online Resource 1) was attached to assist providers at the site arrive at a consensus response. Participants were informed that site-specific results would be published on the Accord Alliance website and were provided the option of being identified by name or pseudonym (i.e., Site 1, Site 2, etc.). No survey question was mandatory outside of the consent to participate, name/pseudonym selection, and final attestation that the survey represented the views of the site’s DSD providers as a group. As such, not all survey items were answered by all sites. Four respondents were unable to review their responses with their entire groups and submitted responses on behalf of their site to the best of their ability.

Good practices and survey development

Good practices and the corresponding survey originated from a combination of a core set of DSD guidance publications and results of a prior benchmarking survey [9]. The core set of DSD guidance documents was identified though a literature search using PubMed®. The search, restricted to items in English published between 2000 and May 2019, included MeSH term disorders of sex development in conjunction with iterations of any of the following: guide, guideline, recommendation, outcome, best practice, consensus, or management. The search returned 3,041 citations. Ten of these publications offered explicit, DSD-wide principles of care, and are hereafter referred to as the “guidance documents” [1, 10–18]. Broadly endorsed and applicable practices were gathered from the guidance documents and grouped into common themes: specialty representation, psychosocial services, point of contact, support resources, education and decision-making, genital exams, professional development, and research (Online Resource 2). This is not an exhaustive collection of all guidance statements available within the guidance documents. Instead, this process was intended to identify points of consensus across the sources. It focused on features of care relevant to all conditions falling under the DSD umbrella, despite heterogeneity in etiology, pathophysiology, presentation, and treatment options.

Rolston and colleagues [9] reported results of a benchmarking survey intended to capture the state of practice in several key areas of DSD clinical care. Examining widely adopted practices was considered an additional approach to identifying good practices. Survey items for which 70% or more of responding sites reported adherence were extracted (10 items) (Online Resource 3). One item that met the criterion, “routinely assess genital anatomy in comparison to published norms,” was not included in the present survey. Other aspects of the genital exam, such as purpose and patient agency, were investigated instead because they are more broadly applicable and more frequently addressed in the guidance documents. These items from Rolston et al. were combined with practices identified in the guidance documents to generate the 11 proposed good practices for pediatric DSD care delivery presented in Table 1. Coalescing the source material into 11 defined practices was necessarily subjective. Accord Alliance strongly guided the work, providing impartial expert review.

Table 1.

Eleven identified DSD “good practices” and their corresponding survey content

Good practice	Survey content assessed …
Specialty representation
1. Utilize a coordinated approach to care with a baseline of the following core pediatric specialties: endocrinology, urology and/or surgery, psychology and/or psychiatry, genetics, and gynecology	• Participation of 13 specialties (including core specialties identified as good practice) at site and in dedicated DSD clinic, when applicable
Psychosocial services
2. Maintain consistent involvement on the care team of psychosocial specialists with expertise in DSD, including issues of gender identity	• Site’s psychosocial assessment and gender development protocols • Access to psychosocial expertise in DSD and gender identity
Point of contact
3. Offer a consistent point of contact within the care team for the patient/family	• Presence of and professional role of clinical service point-of-contact
Peer support
4. Provide regular, up-to-date referrals to support resources (e.g., peer support groups, online support forums)	• Frequency of referrals to support resources and site’s relationship with support groups
5. Maintain a strong connection to patient support and advocacy groups
Condition-specific education and decision-making
6. Deliver full, balanced information on the condition and management options to family/patient. Include verbal and written formats	• Breadth of diagnostic and treatment options presented to patient/family • Information delivery (verbal/written) • Elicitation and incorporation of family/patient’s values in decision making
7. Engage in shared decision making between providers and family/patient
8. Respect the agency of children, as medically and developmentally appropriate
Genital exams
9. Limit genital exams to those necessary for care	• Options given to family/patient regarding occurrence or format of genital exams • If genital exams are ever performed for the primary purpose of clinical training
Professional development
10. Participate in continuing medical education and networks of DSD providers	• Staff involvement in DSD professional development in previous 12 months
Research
11. Contribute to research and patient outcomes tracking efforts	• Inquired about site’s internal patient outcomes tracking practices and participation in research

An online survey to evaluate site adherence with the good practices was constructed using the Qualtrics® platform (Online Resource 1). It comprised up to 30 possible questions using branching logic as well as optional spaces for open-ended comment on most items.

Data analysis

Data are reported using descriptive statistics.

Results

Clinical service characteristics

Eighteen sites (18/21, 86%) reported providing care in a dedicated DSD clinic, defined as a consistent location and time in which a team of specialists meets with patients. Table 2 summarizes the patient volume and years in operation of these dedicated clinics. One of the remaining three clinics commented that they are in the process of opening a dedicated clinic. Another site without a dedicated clinic noted that they face insurance and provider availability barriers to convening multispecialty clinics.

Table 2.

Characteristics of sites with dedicated DSD clinics (n=18)

Years in operation	Total number of patients	New patients per year	Number of sites
<2 years (n=1)	21 – 40	11 – 20	1
2–5 years (n=5)	21 – 40	1 – 10	1
	41 – 100	1 – 10	1
		11 – 20	2
	201 – 300	11 – 20	1
6–10 years (n=8)	41 – 100	1 – 10	1
		11 – 20	2
	101 – 200	11 – 20	3
	≥ 301	≥ 31	2
>10 years (n=4)	41 – 100	1 – 10	1
	101 – 200	11 – 20	1
		21 – 30	1
	201 – 300	11 – 20	1

Specialty representation

The survey inquired about 13 potentially involved specialties and provided a write-in option for specialties not listed. Those most often listed as “always involved” were pediatric endocrinology (21/21, 100%), nursing (19/20, 95%), genetics, pediatric psychology, and pediatric urology (all 17/21, 81%) (Figure 1a). Specialties named in the write-in option (and involved to varying degrees) included patient advocacy, reproductive endocrinology/fertility, maternal fetal medicine, plastic surgery, adult endocrinology, chaplaincy, and cardiology. Among the 18 sites with a dedicated DSD clinic, specialties that most frequently “always attend” are pediatric endocrinology (18/18, 100%), pediatric urology (16/18, 89%), nursing, and pediatric psychology (both 15/16, 94%) (Figure 1b).

Fig. 1.

a. Specialists involved in the care of pediatric patients with DSD at site, but not necessarily within a dedicated DSD clinic. n = 21 sites Fig. 1b Specialists involved in the care of pediatric patients with DSD within a dedicated DSD clinic at site. n = 18 sites

Psychosocial services

Almost all sites (20/21, 95%) reported that they conduct clinical interviews to assess gender development. There is less consistency in the use of standardized questionnaires to assess gender development and psychological adaptation (Figure 2). Twenty sites (20/21, 95%) stated that specialists in gender dysphoria/dissatisfaction management are available on site as needed. The remaining site commented that they attempt to find an appropriate specialist in the community if needed. Three sites named dedicated, on site gender clinics to which the patient would be referred. One commented that it is “very difficult” to find child psychologists with expertise in gender development.

Fig. 2.

Frequency of use of standardized questionnaires and clinical interviews to assess for psychological adaptation and gender development. n = 21 sites

Point of contact

Eighteen sites (18/21, 86%) reported that they have a designated contact person available to families. This person is accessible between clinic visits and knowledgeable about the family’s needs and management plan. Professional roles of these individuals include pediatric endocrinologists, social workers, nurse coordinators, registered nurses, nurse practitioners, genetic counselors, psychologists, pediatric gynecologists, staff assistants, office assistants, and office managers. Three clinics (3/21, 14%) stated that they did not have a consistent point person at the time of the survey, but two indicated that they plan to recruit a point person. One commented that their contact person is not allocated additional time for this role, making it challenging to balance multiple responsibilities.

Peer support

All sites reported that they encourage at least some of their patients and families to contact DSD support organizations, most on a repeated basis (Figure 3). One stated that their peer support recommendations depend on the “parental situation.” Fourteen (14/21, 67%) reported that one or more of their DSD providers have ongoing interactions with DSD support groups. One noted that they are currently exploring ways to include a patient representative in clinic. Thirteen sites (13/21, 62%) offer local peer-to-peer support programs. Four of these train participants on site or through an accredited organization. One site that does not offer a matching program shared concerns about Health Insurance Portability & Accountability Act (HIPAA) compliance with such programs.

Fig. 3.

Connecting families to support organizations. n = 21 sites A: Do providers encourage families to contact support organizations? B: How frequently do providers raise the topic of DSD support organizations with families?

Condition-specific education and decision-making

Sites were asked how often they present all relevant diagnostic and treatment options, including options outside the current standard of care or that providers do not consider the best course of action (e.g., the option to rear a 46, XX baby with congenital adrenal hyperplasia and Prader V masculinization of the genitalia as a boy, or the option to rear a 46, XY baby with 5-alpha-reductase deficiency as a girl). The majority of sites (15/21, 71%) reported that they always provide this information with none answering “never” or “rarely” (Table 3a). Almost all sites (20/21, 95%) stated that they “always” discuss limitations, risks, and controversies of various management options with the families. There was greater variability reported across sites regarding written delivery of this information.

Table 3.

a) Education and decision-making practices. n = 21. b) Genital exam practices. n = 21.

	Never	Rarely	Usually	Always	Case-By-Case Basis
a.
Families informed of all diagnostic and treatment options	0 (0%)	0 (0%)	3 (14%)	15 (71%)	3 (14%)
Diagnostic and treatment information provided in written form	0 (0%)	5 (24%)	10 (48%)	2 (10%)	4 (19%)
Limitations, risks, and controversies of options discussed with family	0 (0%)	0 (0%)	1 (5%)	20 (95%)	0 (0%)
Limitations, risks, and controversies provided in written form	0 (0%)	5 (24%)	6 (29%)	6 (29%)	4 (19%)
Family’s values clarified and incorporated	0 (0%)	0 (0%)	4 (19%)	11 (52%)	6 (29%)
b.
Genital exams conducted in outpatient clinic	0 (0%)	2 (10%)	10 (48%)	1 (5%)	8 (38%)
Families given options regarding how/if genital exam performed	0 (0%)	1 (5%)	3 (14%)	15 (71%)	2 (10%)
Genital exams performed primarily for trainee education	15 (71%)	3 (14%)	0 (0%)	0 (0%)	3 (14%)

Shared decision-making involves an alliance between providers and patients (or their caregiver proxies) that enables informed, values-sensitive choices [14, 19]. Eleven respondents (11/21, 52%) stated that they always engage in a values clarification process with families, with the remaining stating that they do so “usually” or on a “case-by-case basis” (Table 3a). One site reported routinely using a “decision-making checklist” with patients. Another noted that all families discuss their understanding of options and values with the team’s psychologist. One service commented that “not all families are equally articulate in expressing these thoughts,” and another raised the issue of intrafamilial disagreement. Another stated that there is no standardized tool for values clarification.

Genital exams

Genital exams are a necessary element of the physical exam for some DSD to clarify diagnosis and inform/monitor management. Most sites (15/21, 71%) indicated that families are always given options regarding the occurrence or manner of genital exams (e.g., single/multiple providers present; trainees present/absent; with/without child life specialist). Fifteen (15/21, 71%) reported that genital exams are never performed primarily for trainee education. However, genital exams are performed for this purpose at a minority of sites (Table 3b).

Professional development

At 11 (of 21) sites (52%) the majority of providers attended DSD-focused case conferences, webinars, symposia, specialty conferences, or other trainings in the past 12 months. The proportion of DSD providers attending continuing education activities was reported as all at seven sites (7/21, 33%), a minority at two (2/21, 10%), and none at one (1/21, 5%).

Research

Nineteen (of 21) sites (90%) reported that they are involved in DSD research, though three not at present. Five sites (5/20, 20%) track the details of patient diagnoses, clinical management decisions, and/or patient outcomes in an internal database or registry. Five (5/20, 20%) reported tracking only some of these items. Ten sites (10/20, 50%) do not track these variables, but five were developing tracking processes.

Discussion

The intent of the current work was to identify areas of consensus and consolidate them into widely applicable good practices for the delivery of pediatric DSD clinical services. This work aligns with the pathway recently outlined by Jürgensen et al. for QI in DSD care delivery [20]. Jürgensen et al. delineate a need to review existing guidelines in DSD care and “operationalize the recommendations” [20, p. 677]. This is completed in conjunction with stakeholder input to identify measurable indicators of quality care. The first assessment helps examine the indicators’ feasibility and performance.

The good practices in Table 1 reflect principles of DSD care that are likely already familiar to many DSD providers. Indeed, there was widespread reported adherence to many of the practices, particularly in the areas of care coordination, expertise in gender dysphoria/dissatisfaction, and continuing professional education. The results of the survey also highlight areas where variability exists, representing improvement opportunities. These include frequency of referrals for peer support, use of standardized questionnaires in psychosocial assessment, utilization of a values clarification process in shared decision-making, genital exam protocols, and internal tracking protocols.

The guidance documents concur that mental health services should be integral to DSD care. Mental health professionals provide psychological assessments as well as psychosocial support for both the patient and family. For assessment, specialists ideally employ both standardized screening questionnaires and clinical interviews for a range of developmental domains. Based on survey responses, a potential area for immediate improvement is more widespread use of psychosocial screening questionnaires, such as those employed by the DSD – Translational Research Network (DSD-TRN) [21]. Questionnaires with strong psychometric properties can be used to appropriately triage services and assist in tailoring interventions [22, 23]. In aggregate they also provide important information about the needs and adaptation of the wider patient population. One barrier to mental health services raised by a survey participant was difficulty locating child psychologists with expertise in gender development. A shortage of psychologists trained in this domain contributes to inadequate patient access to specialized psychosocial care [24]. Increased training opportunities and system-wide prioritization of mental health services (e.g., adequate time allotment and compensation models) may help address the deficiency [24, 25].

One topic that warrants particular attention is gender dissatisfaction or dysphoria. Although a minority of individuals will experience gender dysphoria, the incidence is higher in several DSD diagnoses compared with the general population [16, 26, 27]. Multiple sites reported that patients with DSD and gender dysphoria are referred to separate gender clinics. However, a medical history of a DSD could potentially contribute to atypical gender development, and it is not clear whether staff of gender clinics are adequately trained to incorporate this factor [28].

Respondents expressed confidence that providers verbally inform families of all relevant diagnostic and treatment options (e.g., deferring genital surgery), even those they may not consider the best course of action. There was greater variability in eliciting the family’s personal values pertaining to management options. These processes are elements of shared decision making and patient/family-centered care, a widely-endorsed model in which the patient and family are active participants in their healthcare team [29, 30]. For families to participate meaningfully in decision-making, the full spectrum of options must be openly provided in a balanced fashion and discussed in light of the importance ascribed by the family to each option. This is particularly important given the absence of robust outcome data for some options. Some survey respondents mentioned a lack of standard methods for value assessment as well as challenges stemming from disagreements between caregiver decision makers. This suggests a need to disseminate and further develop practical resources for patient/caregiver education and decision-making (e.g., patient decision aids) [30, 31]. Providers may improve their communication with families by augmenting conversations with written or multi-media content designed with health literacy in mind. A recent audit of healthcare institutional websites for DSD-related content suggests the need for better quality [32].

Patient/family agency is a clear tenet across guidance documents. This principle is not unique to DSD but is especially important given the potentially sensitive nature of medical discussions and exams [12, 17]. Advocacy groups have condemned genital exams that are performed for reasons other than direct care [15, 33]. Six of the 21 services (29%) reported that in some instances outpatient genital exams are performed for the primary benefit of trainees. Lessons learned in areas of pediatric care other than DSD could potentially be applied with beneficial effects [34].

We observed variability among responding sites regarding the existence and depth of outcome tracking procedures. Tracking is an important source of information for guiding improvement [35]. The guidance documents describe gaps in outcome data and experts consistently call for systematic assessment of outcomes [1, 21]. Established national network-based (e.g., DSD-TRN) and international (e.g., I-DSD and I-CAH) registries are relevant avenues, but these are “opt-in” and should not be viewed as reflective of either processes or outcomes beyond those recruited.

This work represents the first US-based iteration of a QI initiative in pediatric DSD care. QI in healthcare can be conceptually divided into structural measures (also called resources or inputs), process measures (also called activities), and outcome measures (also called results or outputs) [35, 36]. Structural measures include items such as materials, infrastructure, and people. Process measures capture “what a provider does” to promote patient health [36]. Outcome measures demonstrate the impact of services or interventions on patient health. This study focuses on process measures. Good practices by definition are practices, or processes. Process measures reflect mechanisms within a provider’s control that can have a direct and substantial impact on patient health outcomes. In public reporting, the majority of health care quality measures used are process measures [36]. In the domain of good practices, the processes are confidently held to confer a net benefit, even when outcome data is unavailable. However, outcome measures, when appropriately defined and measured, are an integral part of a robust QI plan. Outcome data is lacking in many key areas of DSD. Determining and tracking outcome measures must be a priority in future work.

Public benchmarking and ranking, as initiated in this study, can drive meaningful QI forward. A 2005 study investigated QI among a group of hospitals following distribution of private and public performance reports. It found that, compared to hospitals that received a private or no report, hospitals that received a public performance report engaged in more QI initiatives in the areas in which they received low scores [37]. The authors postulated that the publicity and design of the reports were instrumental. Specifically, the reports were created with straightforward language and graphics and widely disseminated in the relevant communities. The intent of publishing site-specific results in the present work on the Accord Alliance website is to similarly enable access and heighten impact.

Public reporting is intended to induce a healthy “tension for change” [38, p. 601] However, it is not meant as a punitive endeavor. The Health Resources and Services Administration describes that a QI initiative must begin with an honest and objective assessment [35]. The first data collected establishes a baseline. Ranking projects should recognize partial compliance and incentivize gradual improvement in even the lowest performing groups [39]. To act in any other manner would be counterproductive to the ultimate goal of widespread QI in patient care. One goal of the present survey is to sensitize DSD providers to these processes and pave the way for an eventual quality recognition program for DSD care sites. Such programs are an accepted mechanism for improving healthcare outcomes [40, 41, 42, 43, 44]. The current study utilized a novel multi-pronged approach to develop good practice statements that at once acknowledge the limitations of current outcome data, but also value the available guidance stemming from widespread consensus. Sites’ alignment with the good practices will be publicly available, though no score or accreditation will be conferred at this early stage. QI initiatives must proceed at a deliberate pace, balancing momentum for change, pauses for reflection, and stakeholders’ readiness [35].

QI is an iterative process with multiple cycles of planning, analysis, and implementation [35]. This first cycle focused on provider-reported uptake of 11 good practices of widely endorsed principles. A complete evaluation, however, must include the patient/family perspective. It is important to identify any discrepancies between provider and patient perceptions. For example, if a provider believes they are engaging in shared decision-making, but the family does not feel included in decisions, then the provider’s self-report does not adequately capture the current service. Patients/families can provide valuable insights on current clinical picture, the 11 good practices, and future areas of focus.

General good practices do not replace the need for condition-specific CPGs. At present only select conditions categorized as DSD have CPG [3, 4]. These CPGs are targeted to specific populations and were not designed to cover the overarching principles of care referred to here as good practices. While the good practices identified in this work may be incorporated in future CPG, they also fulfill a separate purpose. There will always be a need for operationalized principles of care that cannot or should not be shaped by the CPG development process. Some elements will always be best informed by indirect evidence, though they are no less important.

Limitations

Approximately half of the targeted sites (24 of 45) did not complete the survey. Although lower than desired, the response rate of 47% is not unexpected among healthcare professionals [45]. Recruitment only targeted clinical sites offering coordinated care, determined by reputation or website content. Given the limited number of sites across the US, it is likely that many patients receive care through individual specialties, rather than through the coordinated programs targeted in this study. Some sites may have been deterred by the plan to publish site-specific results, even with the option to remain anonymous. It may be that teams that assess themselves as high performing were more likely to respond, inflating rates of adherence to the good practices. All responses are by self-report, which is an inherent limitation. Sites were not required to answer every survey item, so the sample size varies by question. It is unknown why any given site declined any given question. For most of the survey questions, the most socially desirable answer was arguably obvious. In fact, it should not be cryptic which practices are thought to lead to improved outcomes. Nonetheless, there was variety in clinic responses, indicating that the “best” answer was not automatically selected.

Practice implications

This is the first effort in DSD care to identify areas of consensus from multiple, comprehensive sources and consolidate them into widely applicable good practices. Surveys like the present assess and inform, and they are most meaningful if completed at regular intervals [35]. Accord Alliance plans to issue this survey intermittently to inform stakeholders regarding the location and quality of services. Findings and comments from participating sites in the present study should be incorporated into subsequent iterations. A future companion survey issued to patients/families would be a valuable validation instrument. In addition to ongoing refinement of the good practices, Accord Alliance hopes to issue resources in the future to assist sites in implementation. Ultimately, this work may pave the way for a formal accreditation program for DSD clinical services.