Perioperative medicine training resources: U2M12: Considerations for shared decision making for diverse lifestyles

This poster can be displayed in health services to inform clinicians about people with intellectual disability and the provision of inclusive health care that is safe and high quality.

People with intellectual disability face many barriers when accessing safe and high-quality health care. As a result, they are at high risk of poor health outcomes, chronic disease and premature death from preventable illness. The primary aims of the NSQHS Standards are to protect the public from harm and to improve the quality of health service provision.

Abstract
Adults and children with learning disabilities, or any other physical or mental health problem that makes them more vulnerable than others, may feel particularly anxious or distressed when they need to have a surgical procedure. The anaesthetic phase can be particularly stressful, and it is not unusual for operations to be cancelled at the last minute due to a patient’s anxiety. In 2012, a small team of nurses at James Paget Hospital decided to set up a pathway to provide extra support and reassurance to vulnerable patients and their carers before, during and after elective surgery – the ‘VIP pathway’ was born.

Abstract
Introduction: The perioperative period is high risk for older adults. Depression and anxiety are common perioperative problems, frequently coexisting with cognitive impairment. Older patients with these conditions are more likely than younger patients to experience postoperative delirium, long hospital stays, poor quality of life and rehospitalisation. These experiences can, in turn, exacerbate anxiety and depressive symptoms. Despite these risks, little is known about how to treat perioperative anxiety and depression among older adults.

Methods and analysis: We designed a feasibility study of a perioperative mental health intervention bundle to improve perioperative mental health, specifically depression and anxiety. The overarching goals of this study are twofold: first, to adapt and refine an intervention bundle comprised of behavioural activation and medication optimisation to meet the needs of older adults within three surgical patient populations (ie, orthopaedic, oncological and cardiac); and second, to test the feasibility of study procedures and intervention bundle implementation. Quantitative data on clinical outcomes such as depression, anxiety, quality of life, delirium, falls, length of stay, hospitalisation and pain will be collected and tabulated for descriptive purposes. A hybrid inductive-deductive thematic approach will be employed to analyse qualitative feedback from key stakeholders.

Ethics and dissemination: The study received approval from the Washington University Institutional Review Board. Results of this study will be presented in peer-reviewed journals, at professional conferences, and to our perioperative mental health advisory board.

Abstract
Individuals with intellectual disability (ID) represent a small but important group of hospitalized patients who often have complex health care needs. Individuals with ID experience high rates of hospitalization for ambulatory-sensitive conditions and high rates of hospitalizations in general, even when in formal community care systems; however, no research was found on the common reasons for which this population is hospitalized. Academic medical centers often treat the most complex patients, and data from these centers can provide insight into the needs of patient populations with complex needs. The purpose of this study was to analyze descriptive data from the UHC (formerly known as the University Healthsystem Consortium; an alliance of 115 U.S. academic medical centers and 300 of their affiliated hospitals) regarding common reasons for hospitalization, need for intensive care, and common hospitalization outcome measures of length of stay and complications for adult (age ≥ 18) patients with ID. Findings indicate the need for specific attention to the needs of hospitalized patients with ID.

Abstract
Prader-Willi syndrome (PW) is a rare genetic disorder with multi-organ system involvement. These patients present many perioperative challenges including sleep-related breathing disorders, morbid obesity, thick salivary secretions, mental retardation, and difficult intravenous access. PW has been suggested to be associated with central adrenal insufficiency. We report a novel case of persistent severe hypotension from previously undiagnosed and asymptomatic adrenal insufficiency in a pediatric patient with Prader-Willi syndrome during spine surgery that resolved upon treatment with hydrocortisone.

Abstract
Introduction: Intellectual and developmental disabilities (IDD) include conditions associated with physical, learning, language, behavioural, and/or intellectual impairment. Pain is a common and debilitating secondary condition compromising functional abilities and quality of life.

Objectives: This article addresses scientific and clinical challenges in pain assessment and management in individuals with severe IDD.

Methods: This Clinical Update aligns with the 2019 IASP Global Year Against Pain in the Vulnerable and selectively reviews recurring issues as well as the best available evidence and practice.

Results: The past decade of pain research has involved the development of standardized assessment tools appropriate for individuals with severe IDD; however, there is little empirical evidence that pain is being better assessed or managed clinically. There is limited evidence available to inform effective pain management practices; therefore, treatment approaches are largely empiric and highly variable. This is problematic because individuals with IDD are at risk of developing drug-related side effects, and treatment approaches effective for other populations may exacerbate pain in IDD populations. Scientifically, we are especially challenged by biases in self-reported and proxy-reported pain scores, identifying valid outcome measures for treatment trials, being able to adequately power studies due to small sample sizes, and our inability to easily explore the underlying pain mechanisms due to compromised ability to self-report.

Conclusion: Despite the critical challenges, new developments in research and knowledge translation activities in pain and IDD continue to emerge, and there are ongoing international collaborations.

Abstract
Objective: Tonsillectomy is one of the most common surgical procedures in the United States, with more than 530,000 procedures performed annually in children younger than 15 years. Tonsillectomy is defined as a surgical procedure performed with or without adenoidectomy that completely removes the tonsil including its capsule by dissecting the peritonsillar space between the tonsil capsule and the muscular wall. Depending on the context in which it is used, it may indicate tonsillectomy with adenoidectomy, especially in relation to sleep-disordered breathing. This guideline provides evidence-based recommendations on the preoperative, intraoperative, and postoperative care and management of children 1 to 18 years old under consideration for tonsillectomy. In addition, this guideline is intended for all clinicians in any setting who interact with children 1 to 18 years of age who may be candidates for tonsillectomy.

Purpose: The primary purpose of this guideline is to provide clinicians with evidence-based guidance in identifying children who are the best candidates for tonsillectomy. Secondary objectives are to optimize the perioperative management of children undergoing tonsillectomy, emphasize the need for evaluation and intervention in special populations, improve counseling and education of families of children who are considering tonsillectomy for their child, highlight the management options for patients with modifying factors, and reduce inappropriate or unnecessary variations in care.

Results: The panel made a strong recommendation that clinicians should administer a single, intraoperative dose of intravenous dexamethasone to children undergoing tonsillectomy. The panel made a strong recommendation against clinicians routinely administering or prescribing perioperative antibiotics to children undergoing tonsillectomy. The panel made recommendations for (1) watchful waiting for recurrent throat infection if there have been fewer than 7 episodes in the past year or fewer than 5 episodes per year in the past 2 years or fewer than 3 episodes per year in the past 3 years; (2) assessing the child with recurrent throat infection who does not meet criteria in statement 2 for modifying factors that may nonetheless favor tonsillectomy, which may include but are not limited to multiple antibiotic allergy/intolerance, periodic fever, aphthous stomatitis, pharyngitis and adenitis, or history of peritonsillar abscess; (3) asking caregivers of children with sleep-disordered breathing and tonsil hypertrophy about comorbid conditions that might improve after tonsillectomy, including growth retardation, poor school performance, enuresis, and behavioral problems; (4) counseling caregivers about tonsillectomy as a means to improve health in children with abnormal polysomnography who also have tonsil hypertrophy and sleep-disordered breathing; (5) counseling caregivers that sleep-disordered breathing may persist or recur after tonsillectomy and may require further management; (6) advocating for pain management after tonsillectomy and educating caregivers about the importance of managing and reassessing pain; and (7) clinicians who perform tonsillectomy should determine their rate of primary and secondary posttonsillectomy hemorrhage at least annually. The panel offered options to recommend tonsillectomy for recurrent throat infection with a frequency of at least 7 episodes in the past year or at least 5 episodes per year for 2 years or at least 3 episodes per year for 3 years with documentation in the medical record for each episode of sore throat and 1 or more of the following: temperature >38.3°C, cervical adenopathy, tonsillar exudate, or positive test for group A β-hemolytic streptococcus.

Abstract
Approximately 50% of newborns with Down syndrome have congenital heart disease. Non-cardiac comorbidities may also be present. Many of the principles and strategies of perioperative evaluation and management for patients with congenital heart disease apply to those with Down syndrome. Nevertheless, careful planning for cardiac surgery is required, evaluating for both cardiac and noncardiac disease, with careful consideration of the risk for pulmonary hypertension. In this manuscript, for children with Down syndrome and hemodynamically significant congenital heart disease, we will summarize the epidemiology of heart defects that warrant intervention. We will review perioperative planning for this unique population, including anesthetic considerations, common postoperative issues, nutritional strategies, and discharge planning. Special considerations for single ventricle palliation and heart transplantation evaluation will also be discussed. Overall, the risk of mortality with cardiac surgery in pediatric patients with Down syndrome is no more than the general population, except for those with functional single ventricle heart defects. Underlying comorbidities may contribute to postoperative complications and increased length of stay. A strong understanding of cardiac and non-cardiac considerations in children with Down syndrome will help clinicians optimize perioperative care and long-term outcomes.

Abstract
This landmark paper traces anti-LGBT discrimination in surgery from history to present with particular analysis of discrimination against patients, providers, and within faith-based and military While research alone will not end healthcare iniquity, the work cannot begin until the “Don’t Ask Don’t Tell” era of scholarship on ends. institutions.

Discrimination against marginalized individuals is an epidemic in American Healthcare. Research regarding gender- and race- based discrimination in healthcare and surgery is robust; scholarship on anti-LGBT (Lesbian, Gay, Bisexual, and Transgender; see Table 1 for explanations of commonly used terms) discrimination is woefully lacking. A Pubmed search of the top 10 Surgical Journals by h-index for the terms “Gay” “Lesbian” “LGBT” or “LGBTQ” turns up a single relevant article (1). This is despite the myriad of inequities LGBT surgeons and LGBT surgical patients face. The history of LGBT identity and discrimination has led to inequitable systems at both the structural and interpersonal level which are mutually reinforcing and synergistically harmful to patients (see figure 1). Addressing such inequities in surgery will require continual individual, systemic, and structural changes. Delineating all these changes is beyond the scope of any one paper. However, improving and sustaining LGBT equity cannot begin without first providing a common background to create change upon.

This paper seeks to correct the discursive gap.

Abstract
Recent years have seen an increase in the number of people openly identifying as transgender in the UK, with current estimates ranging between 200 000 and 600 000 individuals. There has also been an increase in the number of patients undergoing both medical and surgical gender-affirming treatment. There are several important, specific considerations that perioperative clinicians must be aware of when caring for transgender patients, including changes to the airway, potential respiratory and cardiovascular complications, and the management of hormone therapy. Alongside this, important general considerations include the correct use of patient pronouns and ensuring patients are admitted to correctly gendered wards. Despite the need for these considerations, the perioperative management of transgender patients is not covered in the Royal College of Anaesthetists' curriculum; to date, no national guidelines exist on the subject. This article discusses some of the key, specific perioperative considerations relevant to transgender patients, and highlights the need for national guidelines and improved education on the subject.

Abstract
Background: The Confidential Inquiry into premature deaths of people with intellectual disabilities in England was commissioned to provide evidence about contributory factors to avoidable and premature deaths in this population.

Methods: The population-based Confidential Inquiry reviewed the deaths of people with intellectual disabilities aged 4 years and older who had been registered with a general practitioner in one of five Primary Care Trust areas of southwest England, who died between June 1, 2010, and May 31, 2012. A network of health, social-care, and voluntary-sector services; community contacts; and statutory agencies notified the Confidential Inquiry of all deaths of people with intellectual disabilities and provided core data. The Office for National Statistics provided data about the coding of individual cause of death certificates. Deaths were described as avoidable (preventable or amenable), according to Office for National Statistics definitions. Contributory factors to deaths were identified and quantified by the case investigator, verified by a local review panel meeting, and agreed by the Confidential Inquiry overview panel. Contributory factors were grouped into four domains: intrinsic to the individual, within the family and environment, care provision, and service provision. The deaths of a comparator group of people without intellectual disabilities but much the same in age, sex, and cause of death and registered at the same general practices as those with intellectual disabilities were also investigated.

Findings: The Confidential Inquiry reviewed the deaths of 247 people with intellectual disabilities. Nearly a quarter (22%, 54) of people with intellectual disabilities were younger than 50 years when they died, and the median age at death was 64 years (IQR 52-75). The median age at death of male individuals with intellectual disabilities was 65 years (IQR 54-76), 13 years younger than the median age at death of male individuals in the general population of England and Wales (78 years). The median age at death of female individuals with intellectual disabilities was 63 years (IQR 54-75), 20 years younger than the median age at death for female individuals in the general population (83 years). Avoidable deaths from causes amenable to change by good quality health care were more common in people with intellectual disabilities (37%, 90 of 244) than in the general population of England and Wales (13%). Contributory factors to premature deaths in a subset of people with intellectual disabilities compared with a comparator group of people without intellectual disabilities included problems in advanced care planning (p=0·0003), adherence to the Mental Capacity Act (p=0·0008), living in inappropriate accommodation (p<0·0001), adjusting care as needs changed (p=0·009), and carers not feeling listened to (p=0·006).

Interpretation: The Confidential Inquiry provides evidence of the substantial contribution of factors relating to the provision of care and health services to the health disparities between people with and without intellectual disabilities. It is imperative to examine care and service provision for this population as potentially contributory factors to their deaths--factors that can largely be ameliorated.

Abstract
Aim: To evaluate outcomes after major surgery in children and adolescents with intellectual disability.

Method: We used 2004 to 2013 claims data from Taiwan's National Health Insurance programme to conduct a nested cohort study, which included 220 292 surgical patients aged 6 to 17 years. A propensity score matching procedure was used to select 2173 children with intellectual disability and 21 730 children without intellectual disability for comparison. Logistic regression was used to calculate the adjusted odds ratios (ORs) and 95% confidence intervals (CIs) of the postoperative complications and 30-day mortality associated with intellectual disability.

Results: Children with intellectual disability had a higher risk of postoperative pneumonia (OR 2.16, 95% CI 1.48-3.15; p<0.001), sepsis (OR 1.67, 95% CI 1.28-2.18; p<0.001), and 30-day mortality (OR 2.04, 95% CI 1.05-3.93; p=0.013) compared with children without intellectual disability. Children with intellectual disability also had longer lengths of hospital stay (p<0.001) and higher medical expenditure (p<0.001) when compared with children with no intellectual disability.

Interpretation: Children with intellectual disability experienced more complications and higher 30-day mortality after surgery when compared with children without intellectual disability. There is an urgent need to revise the protocols for the perioperative care of this specific population.

What this paper adds: Surgical patients with intellectual disability are at increased risk of postoperative pneumonia, sepsis, and 30-day mortality. Intellectual disability is associated with higher medical expenditure and increased length of stay in hospital after surgical procedures. The influence of intellectual disability on postoperative outcomes is consistent in both sexes and those aged 10 to 17 years. Low income and a history of fractures significantly impacts postoperative adverse events for patients with intellectual disability.

Abstract
Background: People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conduct a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps.

Method: A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of the target group in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and overarching themes across studies were sought.

Results: Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/components. Content analysis revealed seven over-arching themes covering individuals' fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes.

Conclusions: Our review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors.

Abstract
People with a learning disability can experience significant problems in accessing healthcare and this may be partly reflected in worse health outcomes compared with the general population, including a shorter life expectancy. The Equality Act (2010) requires that organisations and individuals make changes to the way services are provided for all disabled people to mitigate, as far as possible, any disadvantage they may face in accessing these services. These changes are termed 'reasonable adjustments'. This article describes the reasonable adjustments that can be made to facilitate the admission of an adult surgical patient with a learning disability, and therefore reduce health inequality. Each stage of a patient's journey through the hospital needs to be anticipated and planned for. Many of these changes are not only applicable to the wider care of people with a learning disability, but also to any person who lacks capacity and who is struggling to access healthcare. Key recommendations include the development of assessment tools, pathways and policies specific to the learning disabled patient; identification of key personnel including a learning disability lead, an acute liaison learning disability nurse, pre-assessment and operating theatre personnel and ward learning disability champions; regular multidisciplinary team meetings for planning and best interest assessments; and establishing an electronic alert on the patient administration system to identify learning disabled patients. The anaesthetist, operating theatre and learning disability teams play a pivotal role in ensuring individualised admission plans are made for patients with a learning disability to reduce these healthcare inequalities and improve peri-operative care.

Abstract
The fragile X premutation is characterized by a repeat expansion mutation (between 55 to 200 CGG repeats) in the fragile X mental retardation 1 (FMR1) gene, which leads to RNA toxicity at the cellular level. This may cause patients with the premutation to be particularly susceptible to environmental toxins, which could manifest clinically as new or worsening ataxia and memory loss. Multiple published case reports have also suggested general anesthetics as a potential toxin leading to negative side effects when used in patients with fragile X-associated disorders. However, at this time, there have been no formal research studies regarding cellular changes or long-term clinical manifestations after general anesthetic use in this population. This review aims to highlight previous case reports regarding sequelae related to general anesthetic use in fragile X-associated disorders. New case reports related to this phenomenon are also included.

Abstract
Background: Intellectually disabled patients have various comorbidities, but their risks of adverse surgical outcomes have not been examined. This study assesses pre-existing comorbidities, adjusted risks of postoperative major morbidities and mortality in intellectually disabled surgical patients.

Methods: A nationwide population-based study was conducted in patients who underwent inpatient major surgery in Taiwan between 2004 and 2007. Four controls for each patient were randomly selected from the National Health Insurance Research Database. Preoperative major comorbidities, postoperative major complications and 30-day in-hospital mortality were compared between patients with and without intellectual disability. Use of medical services also was analyzed. Adjusted odds ratios using multivariate logistic regression analyses with 95% confidence intervals were applied to verify intellectual disability's impact.

Results: Controls were compared with 3983 surgical patients with intellectual disability. Risks for postoperative major complications were increased in patients with intellectual disability, including acute renal failure (odds ratio 3.81, 95% confidence interval 2.28 to 6.37), pneumonia (odds ratio 2.01, 1.61 to 2.49), postoperative bleeding (odds ratio 1.35, 1.09 to 1.68) and septicemia (odds ratio 2.43, 1.85 to 3.21) without significant differences in overall mortality. Disability severity was positively correlated with postoperative septicemia risk. Medical service use was also significantly higher in surgical patients with intellectual disability.

Conclusion: Intellectual disability significantly increases the risk of overall major complications after major surgery. Our findings show a need for integrated and revised protocols for postoperative management to improve care for intellectually disabled surgical patients.

Abstract
Objectives: To produce a narrative synthesis of published academic and grey literature focusing on patient safety outcomes for people with learning disabilities in an acute hospital setting.

Design: Scoping review with narrative synthesis.

Methods: The review followed the six stages of the Arksey and O'Malley framework. We searched four research databases from January 2000 to March 2021, in addition to handsearching and backwards searching using terms relating to our eligibility criteria-patient safety and adverse events, learning disability and hospital setting. Following stakeholder input, we searched grey literature databases and specific websites of known organisations until March 2020. Potentially relevant articles and grey literature materials were screened against the eligibility criteria. Findings were extracted and collated in data charting forms.

Results: 45 academic articles and 33 grey literature materials were included, and we organised the findings around six concepts: (1) adverse events, patient safety and quality of care; (2) maternal and infant outcomes; (3) postoperative outcomes; (4) role of family and carers; (5) understanding needs in hospital and (6) supporting initiatives, recommendations and good practice examples. The findings suggest inequalities and inequities for a range of specific patient safety outcomes including adverse events, quality of care, maternal and infant outcomes and postoperative outcomes, in addition to potential protective factors, such as the roles of family and carers and the extent to which health professionals are able to understand the needs of people with learning disabilities.

Conclusion: People with learning disabilities appear to experience poorer patient safety outcomes in hospital. The involvement of family and carers, and understanding and effectively meeting the needs of people with learning disabilities may play a protective role. Promising interventions and examples of good practice exist, however many of these have not been implemented consistently and warrant further robust evaluation.

Abstract
Objective: As limited data exist, we sought to review the safety and outcome of cardiac surgery in the adult Down syndrome population.

Design: We reviewed the data of all patients >or=18 years old with Down syndrome who underwent cardiac surgery (1969-2008) at our hospital.

Results: Fifty patients underwent 57 surgeries (mean age 33 years). Fifteen patients had prior cardiac operations in childhood: 7 complete and 1 partial atrioventricular canal, 2 secundum atrial septal defect, 2 Tetralogy of Fallot, 1 patent ductus arteriosus, 1 combined atrioventricular canal and Tetralogy of Fallot, and 1 ventricular septal defect. Operations in adult Down syndrome patients included repair of partial atrioventricular canal in 17, aortic valve replacement in 7, mitral valve replacement/repair in 7, ventricular septal defect in 6, atrial septal defect in 3, Tetralogy of Fallot in 3, pulmonary valve replacement in 3, and other in 11. There was 1 in-hospital death (1.8%) from multiorgan failure. The mean hospital stay was 10.6 days. Average ventilatory support was 2.4 days (range 0-32). Atrial arrhythmias occurred in 14 patients (25%). Six patients had early postoperative pulmonary infections. Mean follow-up was 6 years, maximum 29 years. There were eight late deaths at an average age of 52 years (range 30-58) occurring 15 years postoperatively (range 32 days-29 years); two in the setting of dementia (mean age 56 years).

Conclusion: At an experienced center, adult patients with Down syndrome can undergo cardiac surgery with a low risk of mortality and acceptable morbidity. Atrial arrhythmias and pulmonary infections are common postoperatively.

Abstract in English, French
Because of enhanced life expectancy due to medical and surgical therapeutic advances, it is estimated that there are more adults than children living with Down syndrome (DS), or trisomy 21, in the United States. Therefore, DS can no longer be considered a syndrome limited to the pediatric population. These patients are presenting for surgery and anesthesia in adult care settings, where anesthesiologists will encounter these patients more frequently. As these patients age, their commonly associated co-morbidities not only progress, but they also develop other cardiac, respiratory, gastrointestinal, and neurologic conditions. The manifestations and consequences of chronic disease can present new challenges for the anesthesiologist and require expertise and judgement to minimize patient risk. The purpose of this narrative review is to describe the common pediatric co-morbidities associated with DS and discuss the age-acquired manifestations. Additionally, considerations for anesthetic care of the adult with DS will be presented, including the preoperative assessment, intraoperative management, and postoperative care.

Abstract
Background: People with comorbid mental illness have poorer health status and disparate access to healthcare. Several studies internationally have reported mixed findings regarding the association between mental illness and surgical patient outcomes. This study examines the surgical outcomes in people with decompensated serious mental illness (SMI) within the setting of the Australian universal healthcare system.

Methods: Retrospective cohort study involving elective overnight surgical patients aged 18 years and above who attended a large public tertiary referral hospital in Sydney, Australia, between 2010 and 2014. Patients were identified using ICD-10-AM diagnosis codes. Outcomes measure including in-hospital mortality, post-operative complications, morbidity, admission and time in intensive care, length and cost of hospitalization, discharge destination and 28-day re-admission rates were examined.

Results: Of 23 343 surgical patient admissions, 451 (2%) patients had decompensated comorbid SMI with a subset of 47 (0.2%) having a specific psychotic illness. Patients with SMI comorbidity had significantly higher in-hospital mortality (2% versus 0%), post-operative complications (22% versus 8%), total comorbidity (7.6 versus 3.4 secondary codes), admissions (29% versus 9%) and time in intensive care (34.6 h versus 5.0 h), stay in hospital (12.2 days versus 4.6 days), admission costs ($24 162 versus $12 336), re-admission within 28 days (14% versus 10%) and discharges to another facility (11% versus 3%).

Conclusion: Patients with comorbid SMI had significantly worse surgical outcomes and incur much higher costs compared with the general surgical population. These results strongly highlight that specific perioperative interventions are needed to proactively improve the identification, management and outcomes for these disadvantaged patients.

Abstract
A multidisciplinary clinic recognizing the reproductive health concerns of mentally handicapped women was organized in 1985. Thirty-three of the 300 women seen in the clinic required surgery. Thirty-seven operations, including 13 major abdominal and two major vaginal operations, were performed. Uterine leiomyoma and ovarian neoplasm were the most common gynecologic conditions requiring major surgery. No complications developed in women undergoing minor procedures; however, six patients undergoing major abdominal procedures developed significant postoperative complications. Because thorough and complete pelvic examinations are often difficult to accomplish in mentally handicapped women, these patients may have increased risk for the delayed diagnosis of gynecologic conditions that require major abdominal or vaginal surgery. Mentally handicapped women with significant physical handicaps are at increased risk of developing postoperative complications, and the postoperative stay may be prolonged.

Abstract
An invitational conference organized by the Netherlands Society of Physicians for Persons with Intellectual Disabilities (NVAVG) and the European Association of Intellectual Disability Medicine (MAMH), in collaboration with the Erasmus Medical Center's Department of Specialist Training for Physicians for People with Intellectual Disabilities, had as its aim the development and issuance of an European manifesto on adequate health care for people with intellectual disabilities (ID). This paper provides an overview of the basis for the conference and the manifesto and lays out recommendations for the implementation of the manifesto's main points. The group's product, the European Manifesto on Basic Standards of Health Care for People with Intellectual Disabilities, summarizes the core elements of adequate health care for individuals with ID, and offers guidance on how Europe's nations may address deficiencies in health provision for people with ID. The manifesto's main points include a call for greater available and accessible health care, increasing the competencies in ID of health professionals, educators, and researchers, a greater reliance on a multidisciplinary approach to health care, more specialist services, and a proactive emphasis on personal health management.

Abstract
Objectives: People with intellectual disability are vulnerable in terms of health service provision due to increased comorbidity, higher dependency and cognitive impairment. This review explored the literature to ascertain what reasonable adjustments are evident in acute care to support people with intellectual disability, ensuring they have fair access and utilisation of health services.

Design: Scoping review.

Setting: Acute care settings.

Methods: Five databases were systematically searched to identify studies that reported on the implementation of reasonable adjustments. Authors worked in pairs to screen studies for inclusion, data were extracted and charted and findings were synthesised according to content and themes.

Results: Of the 7770 records identified, six studies were included in the review. The volume of evidence was influenced by specific inclusion criteria, and only papers that reported on the actual implementation of a reasonable adjustment within an acute care setting were included. Many papers reported on the concept of reasonable adjustment; however, few identified its applications in practice.

Conclusions: The scoping review highlights a lack of research on the practice and implementation of reasonable adjustments within acute care settings. There is a need for increased support, education and the provision of intellectual disability specialists across acute care settings.

Abstract
Aboriginal and Torres Strait Islander people continue to experience health inequity within the Australian health care system. Little research has examined how disparities in surgical care access and outcomes contribute to Aboriginal health. In this narrative review and call to action, we discuss five care points along the journey to high-quality surgical care: health care seeking, primary health care services, specialist services, surgery and surgical outcomes. We highlight barriers and disparities that exist along this journey, drawing examples from the field of joint replacement surgery. Finally, we present opportunities for change at the health system, health service and clinician level, calling upon researchers, clinicians and policy makers to confront the surgical disparities experienced by Aboriginal and Torres Strait Islander people.

Abstract
Objective: To identify the factors that promote and compromise the implementation of reasonably adjusted healthcare services for patients with intellectual disabilities in acute National Health Service (NHS) hospitals.

Design: A mixed-methods study involving interviews, questionnaires and participant observation (July 2011-March 2013).

Setting: Six acute NHS hospital trusts in England.

Methods: Reasonable adjustments for people with intellectual disabilities were identified through the literature. Data were collected on implementation and staff understanding of these adjustments.

Results: Data collected included staff questionnaires (n=990), staff interviews (n=68), interviews with adults with intellectual disabilities (n=33), questionnaires (n=88) and interviews (n=37) with carers of patients with intellectual disabilities, and expert panel discussions (n=42). Hospital strategies that supported implementation of reasonable adjustments did not reliably translate into consistent provision of such adjustments. Good practice often depended on the knowledge, understanding and flexibility of individual staff and teams, leading to the delivery of reasonable adjustments being haphazard throughout the organisation. Major barriers included: lack of effective systems for identifying and flagging patients with intellectual disabilities, lack of staff understanding of the reasonable adjustments that may be needed, lack of clear lines of responsibility and accountability for implementing reasonable adjustments, and lack of allocation of additional funding and resources. Key enablers were the Intellectual Disability Liaison Nurse and the ward manager.

Conclusions: The evidence suggests that ward culture, staff attitudes and staff knowledge are crucial in ensuring that hospital services are accessible to vulnerable patients. The authors suggest that flagging the need for specific reasonable adjustments, rather than the vulnerable condition itself, may address some of the barriers. Further research is recommended that describes and quantifies the most frequently needed reasonable adjustments within the hospital pathways of vulnerable patient groups, and the most effective organisational infrastructure required to guarantee their use, together with resource implications.

Abstract
Over 5 years, 25 severely retarded institutionalized patients accounted for 29 admissions for laparotomy due to acute abdomen. The patients' symptoms were always of short duration, yet 38% of operations were judged to be delayed. This was thought to be due to the patients' inability to communicate and to altered pain sensation. Pica (depraved appetite) accounted for 48% of admissions and perforation was common (41%). The death rate was high (4 (14%) of the 29 admissions and 3 (21%) of the admissions associated with pica). An unexpected high incidence (24%) of peptic ulcer was also seen. Unless the patient was admitted in a state of shock, usual clinical determinations often failed to distinguish early from advanced disease. Young males seem at increased risk and a history of pica is ominous.

Abstract
Background: This study reports on the hospitalisation experiences of older adults with intellectual disability living in group homes.

Methods: Grounded dimensional analysis was used to guide data collection and analysis. Group home residents were tracked prospectively over a 3-year period. Interviews were conducted with family, group home, and aged care staff and managers, and some residents.

Results: Findings highlighted the difficulty people with intellectual disability experience in hospital settings. Findings revealed extensive strategies undertaken by family members and group home staff to improve hospital experiences. Ageing of the family members and staffing implications for group homes complicated efforts to improve hospital experiences.

Conclusions: The current absence of systems to accommodate the special needs of people with intellectual disability in hospital settings has significant consequences for group homes, family members, hospital staff, and residents. Most hospital systems appear to be poorly designed to care for this vulnerable population.

Abstract
Introduction: Patients with developmental disabilities commonly experience psychological distress during health care visits. There is limited research describing which individualized interventions are being implemented to promote optimal care in the perioperative area.

Method: In this prospective observational study of 60 patients with developmental diagnoses, aged 3-21 years, we recorded adaptive care plan (ACP) interventions and assessed family experience.

Results: Patients receiving ACPs had diverse diagnoses, including autism spectrum and 10 other unique syndromes. Most patients received previsit planning (90%), adaptations to standard protocols (60%), child life specialist preparation (67%), procedural support (90%), and were given fast-acting anxiolytics before anesthesia induction (68%). Families reported that ACPs were important for managing a child's stress (94%) and promoting safety (92%).

Discussion: ACPs promote safe, productive health care encounters for patients with various diagnoses, ages, and coping abilities. Families find ACPs important for stress management and promoting safety.

Keywords: Developmental disability; adaptive care; perioperative.

Abstract
Objective: To examine the association between intellectual disability and both severity of disease and clinical outcomes among patients presenting with common emergency general surgery (EGS) conditions.

Background: Accurate and timely diagnosis of EGS conditions is crucial for optimal management and patient outcomes. Individuals with intellectual disabilities may be at increased risk of delayed presentation and worse outcomes for EGS; however, little is known about surgical outcomes in this population.

Methods: Using the 2012-2017 Nationwide Inpatient Sample, we conducted a retrospective cohort analysis of adult patients admitted for 9 common EGS conditions. We performed multivariable logistic and linear regression to examine the association between intellectual disability and the following outcomes: EGS disease severity at presentation, any surgery, complications, mortality, length of stay, discharge disposition, and inpatient costs. Analyses were adjusted for patient demographics and facility traits.

Results: Of 1,317,572 adult EGS admissions, 5,062 (0.38%) patients had a concurrent ICD-9/-10 code consistent with intellectual disability. EGS patients with intellectual disabilities had 31% higher odds of more severe disease at presentation compared with neurotypical patients (aOR 1.31; 95% CI 1.17-1.48). Intellectual disability was also associated with a higher rate of complications and mortality, longer lengths of stay, lower rate of discharge to home, and higher inpatient costs.

Conclusion: EGS patients with intellectual disabilities are at increased risk of more severe presentation and worse outcomes. The underlying causes of delayed presentation and worse outcomes must be better characterized to address the disparities in surgical care for this often under-recognized but highly vulnerable population.