Factors Associated With Provision of Nonbeneficial Surgery: A National Survey of Surgeons.

OBJECTIVE: We tested the association of systems factors with the surgeon's likelihood of offering surgical intervention for older adults with life-limiting acute surgical conditions. BACKGROUND: Use of surgical treatments in the last year of life is frequent. Improved risk prediction and clinician communication are solutions proposed to improve serious illness care, yet systems factors may also drive receipt of nonbeneficial treatment. METHODS: We mailed a national survey to 5200 surgeons randomly selected from the American College of Surgeons database comprised of a clinical vignette describing a seriously ill older adult with an acute surgical condition, which utilized a 2×2 factorial design to assess patient and systems factors on receipt of surgical treatment to surgeons. RESULTS: Two thousand one hundred sixty-one surgeons responded for a weighted response rate of 53%. For an 87-year-old patient with fulminant colitis and advanced dementia or stage IV lung cancer, 40% of surgeons were inclined to offer an operation to remove the patient's colon while 60% were inclined to offer comfort-focused care only. Surgeons were more likely to offer surgery when an operating room was readily available (odds ratio: 4.05, P <0.001) and the family requests "do everything" (odds ratio: 2.18, P <0.001). CONCLUSIONS: Factors outside the surgeon's control contribute to nonbeneficial surgery, consistent with our model of clinical momentum. Further characterization of the systems in which these decisions occur might expose novel strategies to improve serious illness care for older patients and their families.

The Association Between Factors Promoting Nonbeneficial Surgery and Moral Distress: A National Survey of Surgeons.

OBJECTIVE: To assess the prevalence of moral distress among surgeons and test the association between factors promoting non-beneficial surgery and surgeons' moral distress. SUMMARY BACKGROUND DATA: Moral distress experienced by clinicians can lead to low-quality care and burnout. Older adults increasingly receive invasive treatments at the end of life that may contribute to surgeons' moral distress, particularly when external factors, such as pressure from colleagues, institutional norms, or social demands, push them to offer surgery they consider non-beneficial. METHODS: We mailed surveys to 5200 surgeons randomly selected from the American College of Surgeons membership, which included questions adapted from the revised Moral Distress Scale. We then analyzed the association between factors influencing the decision to offer surgery to seriously ill older adults and surgeons' moral distress. RESULTS: The weighted adjusted response rate was 53% (n = 2161). Respondents whose decision to offer surgery was influenced by their belief that pursuing surgery gives the patient or family time to cope with the patient's condition were more likely to have high moral distress (34% vs 22%, P < 0.001), and this persisted on multivariate analysis (odds ratio 1.44, 95% confidence interval 1.02-2.03). Time required to discuss nonoperative treatments or the consulting intensivists' endorsement of operative intervention, were not associated with high surgeon moral distress. CONCLUSIONS: Surgeons experience moral distress when they feel pressured to perform surgery they believe provides no clear patient benefit. Strategies that empower surgeons to recommend nonsurgical treatments when they believe this is in the patient's best interest may reduce nonbeneficial surgery and surgeon moral distress.

Does persistent use of radiation in women > 70 years of age with early-stage breast cancer reflect tailored patient-centered care?

PURPOSE: Randomized controlled trials demonstrate that omission of radiation therapy (RT) in older women with early-stage cancer undergoing breast conserving surgery (BCS) is an "acceptable choice." Despite this, high RT rates have been reported. The objective was to evaluate the impact of patient- and system-level factors on RT rates in a contemporary cohort. METHODS: Through the National Cancer Data Base, we identified women with clinical stage I estrogen receptor-positive breast cancer who underwent BCS (n = 84,214). Multivariable logistic regression identified patient, tumor, and system-level factors associated with RT. Joinpoint regression analysis calculated trends in RT use over time stratified by age and facility-type, reporting annual percent change (APC). RESULTS: RT rates decreased from 2004 (77.2%) to 2015 (64.3%). The decline occurred earliest and was most pronounced in older women treated at academic facilities. At academic facilities, the APC was - 5.6 (95% CI - 8.6, - 2.4) after 2009 for women aged > 85 years, - 6.4 (95% CI - 9.0, - 3.8) after 2010 for women aged 80 - < 85 years, - 3.7 (95% CI - 5.6, - 1.9) after 2009 for women aged 75 - < 80, and - 2.4 (95% CI, - 3.1, - 1.6) after 2009 for women aged 70 - < 75. In contrast, at community facilities rates of RT declined later (2011, 2012, and 2013 for age groups 70-74, 75-79, and 80-84 years). CONCLUSIONS: RT rates for older women with early-stage breast cancer are declining with patient-level variation based on factors related to life expectancy and locoregional recurrence. Facility-level variation suggests opportunities to improve care delivery by focusing on barriers to de-implementation of routine use of RT.

Balancing supply and demand: Review of the 2018 donor heart allocation policy.

Heart transplant remains the most effective treatment for patients with end stage heart failure. Advances in mechanical circulatory support devices have changed the therapeutic landscape and contributed to a demographic shift in patients awaiting transplant. In the setting of a growing waitlist and concern for an inability of current policies to accurately account for patient acuity and equitable geographic distribution of organs, the United Network for Organ Sharing developed a new donor heart allocation policy which was introduced in 2018. The new policy creates more precise listing criteria to reflect patient acuity, addresses previously marginalized groups, and takes steps to address geographic inequalities.

Family and transplant professionals' views of organ recovery before circulatory death for imminently dying patients: A qualitative study using semistructured interviews and focus groups.

Donation before circulatory death for imminently dying patients has been proposed to address organ scarcity and harms of nondonation. To characterize stakeholder attitudes about organ recovery before circulatory death we conducted semistructured interviews with family members (N = 15) who had experienced a loved one's unsuccessful donation after circulatory death and focus groups with professional stakeholders (surgeons, anesthesiologists, critical care specialists, palliative care specialists, organ procurement personnel, and policymakers, N = 46). We then used qualitative content analysis to characterize these perspectives. Professional stakeholders believed that donation of all organs before circulatory death was unacceptable, morally repulsive, and equivalent to murder; consent for such a procedure would be impermissible. Respondents feared the social costs related to recovery before death were too high. Although beliefs about recovery of all organs were widely shared, some professional stakeholders could accommodate removal of a single kidney before circulatory death. In contrast, family members were typically accepting of donation before circulatory death for a single kidney, and many believed recovery of all organs was permissible because they believed the cause of death was the donor's injury, not organ procurement. These findings suggest that definitions of death and precise rules around organ donation are critical for professional stakeholders, whereas donor families find less relevance in these constructs for determining the acceptability of organ donation. Donation of a single kidney before circulatory death warrants future exploration.

Deficiencies in postoperative surveillance for veterans with gastrointestinal cancer.

BACKGROUND AND OBJECTIVES: National guidelines for gastrointestinal (GI) cancers offer surveillance algorithms to facilitate detection of recurrent disease, yet adherence rates are unknown. We sought to characterize postoperative surveillance patterns for veterans with GI cancer at a tertiary care Veterans Affairs Hospital. METHODS: A single-center retrospective cohort study identified patients who underwent surgical resection for colorectal, gastroesophageal or hepatopancreaticobiliary malignancy from 2010-2016. We calculated the annual rate of cancer-directed clinic visits and abdominal imaging and used National Comprehensive Cancer Network guidelines as a benchmark by which to assess adequate surveillance. RESULTS: Ninety-seven patients met inclusion criteria. Median surveillance time was 1203 days. Overall, 44% of patients had insufficient surveillance. Specifically, 11% received no postoperative imaging and 7% had no cancer-directed clinic visits. An additional 30% received less than recommended surveillance imaging and 12% attended fewer than recommended clinic visits. By disease site, insufficient imaging was most common for patients with hepatopancreaticobiliary cancer (63%), while inadequate clinic follow-up was highest for colorectal cancer (24%). CONCLUSION: A significant proportion of veterans with GI cancer received either inadequate postoperative surveillance based on national guidelines. This deficiency represents an opportunity for improvement through targeted efforts, including telemedicine and education of patients and providers.

Harms of unsuccessful donation after circulatory death: An exploratory study.

While donation after circulatory death (DCD) has expanded options for organ donation, many who wish to donate are still unable to do so. We conducted face-to-face interviews with family members (N = 15) who had direct experience with unsuccessful DCD and 5 focus groups with professionals involved in the donation process. We used qualitative content analysis to characterize the harms of nondonation as perceived by participants. Participants reported a broad spectrum of harms affecting organ recipients, donors, and donor families. Harms included waste of precious life-giving organs and hospital resources, inability to honor the donor's memory and character, and impaired ability for families to make sense of tragedy and cope with loss. Donor families empathized with the initial hope and ultimate despair of potential recipients who must continue their wait on the transplant list. Focus group members reinforced these findings and highlighted the struggle of families to navigate the uncertainty regarding the timing of death during the donation process. While families reported significant harm, many appreciated the donation attempt. These findings highlight the importance of organ donation to donor families and the difficult experiences associated with current processes that could inform development of alternative donation strategies.

Barriers to Goal-concordant Care for Older Patients With Acute Surgical Illness: Communication Patterns Extrinsic to Decision Aids.

OBJECTIVE: We sought to characterize patterns of communication extrinsic to a decision aid that may impede goal-concordant care. BACKGROUND: Decision aids are designed to facilitate difficult clinical decisions by providing better treatment information. However, these interventions may not be sufficient to effectively reveal patient values and promote preference-aligned decisions for seriously ill, older adults. METHODS: We conducted a secondary analysis of 31 decision-making conversations between surgeons and frail, older inpatients with acute surgical problems at a single tertiary care hospital. Conversations occurred before and after surgeons were trained to use a decision aid. We used directed qualitative content analysis to characterize patterns within 3 communication elements: disclosure of prognosis, elicitation of patient preferences, and integration of preferences into a treatment recommendation. RESULTS: First, surgeons missed an opportunity to break bad news. By focusing on the acute surgical problem and need to make a treatment decision, surgeons failed to expose the life-limiting nature of the patient's illness. Second, surgeons asked patients to express preference for a specific treatment without gaining knowledge about the patient's priorities or exploring how patients might value specific health states or disabilities. Third, many surgeons struggled to integrate patients' goals and values to make a treatment recommendation. Instead, they presented options and noted, "It's your decision." CONCLUSIONS: A decision aid alone may be insufficient to facilitate a decision that is truly shared. Attention to elements beyond provision of treatment information has the potential to improve communication and promote goal-concordant care for seriously ill older patients.

Surgical Management of Lobular Carcinoma In Situ: Analysis of the National Cancer Database.

BACKGROUND: Current guidelines recommend counseling on risk-reduction strategies, including lifestyle modification, endocrine therapy, and bilateral mastectomy, for patients with classic-type lobular carcinoma in situ (LCIS) detected on core biopsy or surgical excision. Importantly, current diagnosis and treatment guidelines for classic-type LCIS do not include unilateral mastectomy for primary treatment or risk reduction. Prior studies reporting national practice patterns suggest increasing use of mastectomy for management of LCIS, with considerable variation by geographic region. However, these studies did not distinguish between uni- and bilateral mastectomies. This study aimed to investigate national practice patterns and factors associated with unilateral mastectomy. METHODS: The study used the National Cancer Database to identify women with a diagnosis of LCIS from 2004 to 2013. Descriptive statistics were used to describe surgical treatment, and multinomial logistic regression was used to identify temporal, patient, and facility-level factors associated with receipt of uni- and bilateral mastectomy. RESULTS: The study identified 30,105 women with LCIS. Of these woman, 5.4% received no surgery, 84.8% had surgical excision, 4% underwent unilateral mastectomy, and 5.1% underwent bilateral mastectomy. Adjusted analysis showed that young age, white race, insurance coverage, greater comorbidity, and geographic region (p < 0.001) were associated with receipt of both uni- and bilateral mastectomy. Additionally, more recent year of diagnosis was associated with receipt of bilateral mastectomy. Unilateral mastectomy rates within geographic regions ranged from 2.7% in New England to 8% in the South. CONCLUSIONS: Nearly as many patients underwent unilateral (4%) as bilateral mastectomy (5.1%), representing inappropriate care. These findings highlight an opportunity to reduce unnecessary care through improved provider and patient education regarding optimal management of LCIS.

Utilization of surgical treatment for local and locoregional esophageal cancer: Analysis of the National Cancer Data Base.

BACKGROUND: Previous studies have suggested that esophagectomy is severely underused for patients with resectable esophageal cancer. The recent expansion of endoscopic local therapies, advances in surgical techniques, and improved postoperative outcomes have changed the therapeutic landscape. The impact of these developments and evolving treatment guidelines on national practice patterns is unknown. METHODS: Patients diagnosed with clinical stage 0 to III esophageal cancer were identified from the National Cancer Database (2004-2013). The receipt of potentially curative surgical treatment over time was analyzed, and multivariate logistic regression was used to identify factors associated with surgical treatment. RESULTS: The analysis included 52,122 patients. From 2004 to 2013, the overall rate of potentially curative surgical treatment increased from 36.4% to 47.4% (P < .001). For stage 0 disease, the receipt of esophagectomy decreased from 23.8% to 17.9% (P < .001), whereas the use of local therapies increased from 34.3% to 58.8% (P < .001). The use of surgical treatment increased from 43.4% to 61.8% (P < .001), from 36.1% to 45.0% (P < .001), and from 30.8% to 38.6% (P < .001) for patients with stage I, II, and III disease, respectively. In the multivariate analysis, divergent practice patterns and adherence to national guidelines were noted between academic and community facilities. CONCLUSIONS: The use of potentially curative surgical treatment has increased for patients with stage 0 to III esophageal cancer. The expansion of local therapies has driven increased rates of surgical treatment for early-stage disease. Although the increased use of esophagectomy for more advanced disease is encouraging, significant variation persists at the patient and facility levels. Cancer 2017;123:410-419. © 2016 American Cancer Society.

Socioeconomic Factors Associated with Post-Mastectomy Immediate Reconstruction in a Contemporary Cohort of Breast Cancer Survivors.

BACKGROUND: Post-mastectomy reconstruction is a critical component of high-quality breast cancer care. Prior studies demonstrate socioeconomic disparity in receipt of reconstruction. Our objective was to evaluate trends in receipt of immediate reconstruction and examine socioeconomic factors associated with reconstruction in a contemporary cohort. METHODS: Using the National Cancer Database, we identified women <75 years of age with stage 0-1 breast cancer treated with mastectomy (n = 297,121). Trends in immediate reconstruction rates (2004-2013) for the overall cohort and stratified by socioeconomic factors were examined using Join-point regression analysis, and annual percentage change (APC) was calculated. We then restricted our sample to a contemporary cohort (2010-2013, n = 145,577). Multivariable logistic regression identified socioeconomic factors associated with immediate reconstruction. Average adjusted predicted probabilities of receiving reconstruction were calculated. RESULTS: Immediate reconstruction rates increased from 27 to 48%. Although absolute rates of reconstruction for each stratification group increased, similar APCs across strata led to persistent gaps in receipt of reconstruction. On multivariable logistic regression using our contemporary cohort, race, income, education, and insurance type were all strongly associated with immediate reconstruction. Patients with the lowest predicted probability of receiving reconstruction were patients with Medicaid who lived in areas with the lowest rates of high-school graduation (Black 42.4% [95% CI 40.5-44.3], White 45.7% [95% CI 43.9-47.4]). CONCLUSIONS: Although reconstruction rates have increased dramatically over the past decade, lower rates persist for disadvantaged patients. Understanding how socioeconomic factors influence receipt of reconstruction, and identifying modifiable factors, are critical next steps towards identifying interventions to reduce disparities in breast cancer surgical care.

Improving the histologic characterization of burn depth.

BACKGROUND: Visual assessment of burn wound appearance is the standard of care to determine the depth of thermal injury but often incorrectly predicts wound healing potential. Histologic evaluation of hematoxylin and eosin (H&E) stained burn tissue is prone to subjectivity and is challenging for the novice. Lactate dehydrogenase (LDH) staining may offer a simplified and consistent technique to identify burn tissue viability. METHODS: Thirty tissue samples were obtained from 6 patients undergoing surgical excision for clinically determined deep partial thickness or full thickness burns. Tissues were stained with H&E or LDH. Each specimen was scored by 3 individuals with varying levels of skill in histologic interpretation using a standardized checklist at 2 distinct time points. RESULTS: Agreement within raters was highest for the expert rater and lowest for the novice; however, the LDH stained tissue method had improved agreement for an experienced burn surgeon and novice. Agreement between raters was greater for the LDH stained samples which were determined to have greater viability than the corresponding H&E section in 100% of samples scored by the expert and in 80% for the novice clinician. CONCLUSION: LDH staining offers a more consistent measure of tissue viability that can be used by experienced and novice clinicians.

Dose effect of local anesthetics on analgesic outcomes for the transversus abdominis plane (TAP) block in children: a randomized, double-blinded, clinical trial.

BACKGROUND: Current knowledge on local anesthetic dosage for the TAP block in pediatric patients is very limited. OBJECTIVE: To evaluate the effect of two escalating local anesthetic doses on postsurgical analgesic outcomes in children receiving a TAP block. METHODS: The study was a prospective, randomized, double-blinded, clinical trial. Children (<8 years) were randomized to one of the two intervention groups: TAP block with bupivacaine at a dose of 2.5 mg · kg(-1) or 1.25 mg · kg(-1). Analgesic outcomes included pain scores in the postanesthesia care unit (PACU), time to analgesic requirement and total number of analgesic requirements. RESULTS: Thirty-six patients were recruited in the study. Pain scores in PACU were not different between study groups. The total number of analgesic dosage required in 24 h after surgery was higher in the lower dose group, median (IQR) of 4 (3 to 5) compared to 2.5 (1.5 to 3) in the greater dose group, P = 0.03. There was a clinically but not statistically significant difference in the time to first analgesic requirement in the 2.5 mg · kg(-1) group, median (IQR) of 248 (130 to 367) minutes compared to 146 (95 to 261) minutes in the 1.25 mg · kg(-1) dose group, P = 0.15. CONCLUSIONS: The use of higher local anesthetic doses for the TAP block in children does not provide benefits on early pain scores but seems to improve analgesic duration and decrease the need for additional analgesics over 24 h after surgery. The use of higher, but yet safe, local anesthetic dosages for TAP blocks is a viable strategy to improve analgesia in children.

Evidence for shared deficits in identifying emotions from faces and from voices in autism spectrum disorders and specific language impairment.

BACKGROUND: While autism spectrum disorder (ASD) and specific language impairment (SLI) have traditionally been conceptualized as distinct disorders, recent findings indicate that the boundaries between these two conditions are not clear-cut. While considerable research has investigated overlap in the linguistic characteristics of ASD and SLI, relatively less research has explored possible overlap in the socio-cognitive domain, particularly in terms of the emotion recognition abilities of these two groups of children. AIMS: To investigate facial and vocal emotion recognition in children with ASD, children with SLI and typically developing (TD) children. To do so, the ASD group was subdivided into those with 'normal' (ALN) and those with 'impaired' (ALI) language to explore the extent to which language ability influenced performance on the emotion recognition task. METHODS & PROCEDURES: Twenty-nine children with ASD (17 ALN and 12 ALI), 18 children with SLI and 66 TD children completed visual and auditory versions of an emotion recognition task. For the visual version of the task, the participants saw photographs of people expressing one of six emotions (happy, sad, scared, angry, surprised, disgusted) on the whole face. For the auditory modality, the participants heard a neutral sentence that conveyed one of the six emotional expressions in the tone of the voice. In both conditions, the children were required to indicate how the person they could see/hear was feeling by selecting a cartoon face that was presented on the computer screen. OUTCOMES & RESULTS: The results showed that all clinical groups were less accurate than the TD children when identifying emotions on the face and in the voice. While the ALN children were less accurate than the TD children only when identifying expressions that require inferring another's mental state (surprise, disgust) emotional expressions, the ALI and the SLI children were less accurate than the TD children when identifying the basic (happy, sad, scared, angry) as well as the inferred emotions. CONCLUSIONS & IMPLICATIONS: The results indicate that children with ALI and children with SLI share emotion recognition deficits, which are likely to be driven by the poor language abilities of these two groups.

Decision-Making in Surgery.

Surgeons face unique challenges in perioperative decision-making and communication with patients and families. In cardiothoracic surgery, the stakes are high, life and death decisions must be made quickly, and surgeons often lack a longstanding relationship with patients and families prior to intervention. This review considers specific challenges in the preoperative period followed by those faced postoperatively. While preoperative deliberation and informed consent focus on reaching a decision between 2 or more alternative approaches, the most vexing postoperative decisions often involve the patient's discontent with the best-case outcome or how to ensure goal-concordant care when complications arise. This review explores the preoperative ethical and legal requirement for informed consent by describing the contemporary preferred method, shared decision-making. We also present a framework to optimize surgeon communication and promote patient and family engagement in the setting of high-risk surgery for older patients with serious illness. In the postoperative period the family is often tasked with deciding what to do about major complications when the patient has lost decision-making capacity. We discuss several examples and offer strategies for surgeons to navigate these challenging situations. We also explore the concepts of clinical heroism and futility in relation to communicating with patients and families about the outcomes of surgery. Persistent ethical challenges in decision-making suggest that surgeons should improve their skills in communicating with patients to better engage with them, both before and after surgery.

Surgical Resection in Nontuberculous Mycobacterial Pulmonary Disease.

Rates of nontuberculous mycobacterial pulmonary disease are increasing worldwide, particularly in the United States and other developed countries. While multidrug antimicrobial therapy is the mainstay of treatment, surgical resection has emerged as an important adjunct. In this article, we will review the indications for surgery, preoperative considerations, surgical techniques, and postoperative outcomes.

Early posthospitalization recovery after extracorporeal membrane oxygenation in survivors of COVID-19.

OBJECTIVE: We sought to determine the influence of venovenous extracorporeal membrane oxygenation (ECMO) on outcomes of mechanically ventilated patients with COVID-19 during the first 120 days after hospital discharge. METHODS: Five academic centers conducted a retrospective analysis of mechanically ventilated patients with COVID-19 admitted during March through May 2020. Survivors had access to a multidisciplinary postintensive care recovery clinic. Physical, psychological, and cognitive deficits were measured using validated instruments and compared based on ECMO status. RESULTS: Two hundred sixty two mechanically ventilated patients were compared with 46 patients cannulated for venovenous ECMO. Patients receiving ECMO were younger and traveled farther but there was no significant difference in gender, race, or body mass index. ECMO patients were mechanically ventilated for longer durations (median, 26 days [interquartile range, 19.5-41 days] vs 13 days [interquartile range, 7-20 days]) and were more likely to receive inhaled pulmonary vasodilators, neuromuscular blockade, investigational COVID-19 therapies, blood transfusions, and inotropes. Patients receiving ECMO experienced greater bleeding and clotting events (P < .01). However, survival at discharge was similar (69.6% vs 70.6%). Of the 217 survivors, 65.0% had documented follow-up within 120 days. Overall, 95.5% were residing at home, 25.7% had returned to work or usual activity, and 23.1% were still using supplemental oxygen; these rates did not differ significantly based on ECMO status. Rates of physical, psychological, and cognitive deficits were similar. CONCLUSIONS: Our data suggest that COVID-19 survivors experience significant physical, psychological, and cognitive deficits following intensive care unit admission. Despite a more complex critical illness course, longer average duration of mechanical ventilation, and longer average length of stay, patients treated with venovenous ECMO had similar survival at discharge and outcomes within 120 days of discharge.

Which Factors Influence Teacher Report of Adaptive Functioning in Autistic Children?

A wealth of parent-report research shows adaptive functioning difficulties in autistic children, with parent-report influenced by a number of child factors. Adaptive functioning in autistic children is known to vary across settings; however, no research has yet explored factors influencing education professional-report. This study investigated the rate and profile of impairment, and child factors influencing education professional-reported adaptive skills in 248 autistic children. Twelve children were < 3 years (min age for available normative data on the adaptive function measure), so were removed from the analyses. Results replicated parent-literature; adaptive skills were negatively associated with age and informant-reported autism severity, and positively associated with nonverbal ability and expressive language. Adaptive functioning is important for real-world outcomes, e.g. educational attainment, independence, and support needs. Improving our understanding of adaptive functioning in the education context may support opportunities for shared learning and enhance personalised support .

A Survey of Autistic Adults from New Zealand on the Autism Diagnostic Process During Adolescence and Adulthood.

The diagnostic experiences of autistic adults in New Zealand have not been investigated and little is known globally about autistic adults' satisfaction with the autism diagnostic process. This study describes the diagnostic experiences of 70 autistic adults living in New Zealand and explores how these experiences are related to satisfaction during three stages of the diagnostic process. The results show that autistic adults were reasonably satisfied with the early query and diagnostic assessment stages, but were dissatisfied with the post-diagnostic support stage, with significant unmet needs. Dissatisfaction during the post-diagnostic support stage was also related to satisfaction during previous stages and poor coordination of supports. Suggestions are made on how to improve the autism diagnostic pathway for autistic adults in New Zealand.