Anticipatory Care Research Articles

Does the risk of poor mental health rise before widowhood?

Background A large body of literature has shown that transition into widowhood has detrimental effects on the surviving spouse’s health leading to elevated risks of mortality, poor mental health and hospitalisation. However, few studies have examined health outcomes before widowhood. Anticipatory grief and long term care giving are likely to lead to poor mental health conditions.
 Aim This paper examined whether the risk of depression and anxiety rose before the widowhood event using linked administrative data.
 Methods The study population was drawn from the Scottish Longitudinal Study (SLS) linked to prescribing data, available from 2009. We included all cohort members who were married in 2001 and who were aged 50 and over by 2009. We then followed the cohort for 5 years from 2009 to 2013 (N=~58,000). Andersen-Gill models were used to explore the risk of prescription of antidepressant and antianxiety drugs before and after loss of spouse adjusting for a number of confounders. The analysis was carried out separately for men and women.
 Results We found that the risk of depression and anxiety were higher 6 months before widowhood for women (0-3 months, HR=1.17, 95%CI 1.07-1.28; 3-6 months, HR=1.15, 95%CI 1.05-1.27) but not for men (0-3 months HR=1.07, 95% CI 0.90-1.26; 3-6 months HR=1.01, 95% CI 0.84-1.21). The risk after widowhood for men became significantly higher lasting for 2 years (0-3 months HR=1.40, 95% CI 1.21-1.61; 21-24 months HR=1.24, 95% CI 1.01-1.52). For women the elevated risk remained at a heightened level up to 2 years (0-3 months HR=1.50, 95% CI 1.29-1.75; 21-24 months HR=1.29, 95% CI 1.03-1.60).
 Conclusion It has been previously shown that widowhood has negative effects on a surviving partners’ health. This research shows that this effect is also apparent in women before their partner’s deaths.

Approach to circulation after cardiac surgery in children

Pediatric intensivists are called to patient bedsides in the pediatric cardiac intensive care unit (CICU) after congenital cardiac surgery for low blood pressure (BP) and/or poor perfusion, acute change in heart rate (HR) or rhythm, surgical site bleeding or increased chest tube output, anuria or oliguria, oxygen desaturation less than expected or metabolic acidosis with rising lactic acid and base deficit. Causes of acute circulatory failure after cardiac surgery are divided into four categories which must be considered when approaching the patient in CICU (Table 1).Assessing cardiac output in CICU remains challenging, hemodynamic parameters are usually monitored, along with physical examination, i.e. HR, BP, right and left atrial pressures. There are surrogate markers i.e., mixed venous saturation, brain and renal NIRS, toe temperature, urine output, and then laboratory workup to determine acidosis due to end-organ dysfunction. Echocardiography can confirm low cardiac output syndrome (LCOS) occurs after cardiac surgery with the following major indicators; abnormal ventricular-vascular interaction after bypass, the functionally univentricular circulation, abnormal diastolic function after surgery to the right heart and residual anatomic lesions.1 The limited support tools that are available to manage circulatory failure post cardiac surgery in the CICU are the following: Medications: High labile pulmonary vascular tone (PVR) occurs in patients with pulmonary over-circulation i.e., ASD (atrial septal defect), VSD (ventricular septal defect), PDA (patent ductus arteriosus) and AV canal (atrioventricular canal). Pulmonary venous hypertension, i.e. TAPVR with obstruction, HLHS with restrictive atrial communication and in the univentricular heart after Norwood, shunt or PA band has unstable PVR. Functionally univentricular hearts don't tolerate increased SVR and at the same time, decreased SVR may not be desirable for patients who have fixed systemic or pulmonary obstruction. There are a wide variety of medications to use, but essentially two, milrinone2,3 and epinephrine are very important and widely used. Milrinone is routinely used after cardiac surgery to minimize the LCOS, which works in a receptor independent manner and is synergistic to beta-adrenergic ionotropic effect. Most patients benefit from low dose epinephrine for decreased cardiac function. Nitroprusside is effective where after-load is high, a low dose should always be started titrating to the optimal BP. Generally, there is no role of dopamine in these patients.4 Ventilation-cardiopulmonary interaction: Ventilation at functional residual capacity needs to be targeted. Managing rhythm: Recognition of rhythm is a crucial aspect of care. It is equally important to pay attention to the appropriate heart rate. Extracorporeal mechanical support: The last resort is to put the patient on extracorporeal membrane oxygenation.In summary, the past two decades have seen important advances in our understanding of the circulatory physiology of infants and children post cardiac surgery. When approaching the patients with cardiovascular dysfunction, it is essential to approach the cardiopulmonary system in its entirety, rather than consider the heart, lungs, or peripheral circulation as isolated elements. Working towards one common goal of optimizing systemic oxygen delivery and emphasizing anticipatory intensive care tailored to individual patients with the need for early, targeted investigation and intervention is essential when patients are not progressing as expected.

All-cause mortality and survival in adults with 22q11.2 deletion syndrome

PurposeGiven limited data available on long-term outcomes in 22q11.2 deletion syndrome (22q11.2DS), we investigated mortality risk in adults with this microdeletion syndrome. MethodsWe studied 309 well-characterized adults (age ≥17 years) with 22q11.2DS and their 1014 unaffected parents and siblings, using a prospective case–control design. We used Cox proportional hazards regression modeling and Kaplan–Meier curves to investigate effects of the 22q11.2 deletion and its associated features on all-cause mortality and survival. ResultsThe 22q11.2 deletion (hazard ratio [HR] 8.86, 95% CI 2.87–27.37) and major congenital heart disease (CHD; HR 5.03, 95% CI 2.27–11.17), but not intellectual disability or psychotic illness, were significant independent predictors of mortality for adults with 22q11.2DS compared with their siblings. Amongst those with 22q11.2DS, there were 31 deaths that occurred at a median age of 46.4 (range 18.1–68.6) years; a substantial minority had outlived both parents. Probability of survival to age 45 years was approximately 72% for those with major CHD, and 95% for those with no major CHD (p < 0.0001). ConclusionFor adults with 22q11.2DS, the 22q11.2 deletion and more severe forms of CHD both contribute to a lower life expectancy than family-based expectations. The results have implications for genetic counseling and anticipatory care.

Anticipatory care of children and adolescents with inflammatory bowel disease: a primer for primary care providers.

About 10-20% of patients with newly diagnosed inflammatory bowel disease (IBD) are under 18 years of age, with incidence increasing in young children. Children with IBD have unique healthcare needs, which require coordination between primary care providers and pediatric gastroenterologists to provide appropriate care. This review highlights some key elements of anticipatory care in pediatric IBD, including vaccination, risk of serious infection and malignancy, psychosocial and educational needs, and cannabis use. Therapies for IBD that include anti-tumor necrosis factor medications, especially when combined with corticosteroids are associated with higher risks of serious infections. Vaccination remains the best way to prevent infections. Live vaccinations should be avoided during immunosuppression, but the schedule should be otherwise completed, including vaccination for influenza, pneumococcus and meningococcus, and human papillomavirus. Malignancy risk is increased in IBD patients, both because of disease factors and resulting from immunomodulatory medications. Children with IBD are at risk for mental health disorders and negative educational outcomes, so identification of at-risk children and early intervention are important. High-quality care in pediatric IBD requires coordination between pediatric gastroenterologists and primary care providers, with careful attention paid to the specific needs of children with IBD.

Anticipatory care and predictive analytics; sensemaking in the emerging world of 'big data'

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)The IJIC 20th Anniversary Issue was published in 2021.

Tools to support anticipatory care planning and polypharmacy reviews

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)

Writing a good anticipatory care plan for a child with severe disability

There are increasing numbers of children with severe disability and life limiting conditions living longer in the community. In order for them to have high quality end of life care and choice of place of death there need to be discussions with the child and family about how the child may deteriorate and the pros and cons of the different possible interventions taking into account the priorities and views of the family and the child themselves. Families and professionals are reluctant to talk about the death of a child and there is always uncertainty. Parallel planning for best and worst case scenarios can be helpful and offering families a useful medical emergency care plan for their child is a positive way to start to plan for deterioration and life threatening events. The emergency care plan can include the resuscitation plan and the child and family priorities of care and leads on to further discussions about choices in end of life care including place of death and funeral plans.

Speech-Language Disorders in 22q11.2 Deletion Syndrome: Best Practices for Diagnosis and Management.

PurposeSpeech and language disorders are hallmark features of 22q11.2 deletion syndrome (22qDS). Learning disabilities, cognitive deficits, palate abnormalities, velopharyngeal dysfunction, behavioral differences, and various medical and psychiatric conditions are also major features of this syndrome. The goal of this document is to summarize the state of the art of current clinical and scientific knowledge regarding 22qDS for speech-language pathologists (SLPs) and provide recommendations for clinical management.MethodBest practices for management of individuals with 22qDS were developed by consensus of an expert international group of SLPs and researchers with expertise in 22qDS. These care recommendations are based on the authors' research, clinical experience, and literature review.ResultsThis document describes the features of 22qDS as well as evaluation procedures, treatment protocols, and associated management recommendations for SLPs for the often complex communication disorders present in this population.ConclusionEarly diagnosis and appropriate management of speech-language disorders in 22qDS is essential to optimize outcomes and to minimize the long-term effects of communication impairments. Knowledge of this diagnosis also allows anticipatory care and guidance regarding associated features for families, health care, and educational professionals.

Evidence-Based Practice Guideline: Assessing Heart Failure in Long-Term Care Facilities.

Evidence suggests the most crucial elements to successful heart failure (HF) management in long-term care (LTC) include improving staffs' HF knowledge to recognize and intervene in early symptom exacerbations, embedding an effective and integrated interprofessional communication system into daily care processes, risk stratification, and anticipatory advanced care planning. Despite a large body of evidence describing best practices, quality HF management remains elusive in LTC facilities. Studies have shown that care quality and outcomes improve when the entire team, including direct caregivers, have an active role in residents' care planning and implementation. The current article summarizes a revised evidence-based practice guideline on assessing HF, addressing a systematic approach to care delivery, and implementing evidence-based best practices for HF quality improvement initiatives in LTC, post-acute care, and short-term rehabilitation settings. [Journal of Gerontological Nursing, 45(7), 18-24.].

Anticipatory Care Planning Intervention for Older Adults at Risk of Functional Decline: A Primary Care Feasibility Study

Anticipatory Care Planning Intervention for Older Adults at Risk of Functional Decline: A Primary Care Feasibility Study

Equivalence of mental and physical illness: the paradox of provision

Much has been written regarding the need to consider an equivalence of provision, including access to evidence‐based treatments, between physical and mental health. However, the author argues that while physical health is increasingly shifting towards models of self‐management and anticipatory care planning, services for mental health are increasingly adopting an open access policy to individuals in ‘crisis’, often at the expense of mainstream services

Comparing the predictive ability of the Revised Minimum Dataset Mortality Risk Index (MMRI-R) with nurses' predictions of mortality among frail older people: a cohort study.

to establish the accuracy of community nurses' predictions of mortality among older people with multiple long-term conditions, to compare these with a mortality rating index and to assess the incremental value of nurses' predictions to the prognostic tool. a prospective cohort study using questionnaires to gather clinical information about patients case managed by community nurses. Nurses estimated likelihood of mortality for each patient on a 5-point rating scale. The dataset was randomly split into derivation and validation cohorts. Cox proportional hazard models were used to estimate risk equations for the Revised Minimum Dataset Mortality Risk Index (MMRI-R) and nurses' predictions of mortality individually and combined. Measures of discrimination and calibration were calculated and compared within the validation cohort. two NHS Trusts in England providing case-management services by nurses for frail older people with multiple long-term conditions. 867 patients on the caseload of 35 case-management nurses. 433 and 434 patients were assigned to the derivation and validation cohorts, respectively. Patients were followed up for 12 months. 249 patients died (28.72%). In the validation cohort, MMRI-R demonstrated good discrimination (Harrell's c-index 0.71) and nurses' predictions similar discrimination (Harrell's c-index 0.70). There was no evidence of superiority in performance of either method individually (P = 0.83) but the MMRI-R and nurses' predictions together were superior to nurses' predictions alone (P = 0.01). patient mortality is associated with higher MMRI-R scores and nurses' predictions of 12-month mortality. The MMRI-R enhanced nurses' predictions and may improve nurses' confidence in initiating anticipatory care interventions.

Cultural respect in general practice: a cluster randomised controlled trial.

To examine whether the Ways of Thinking and Ways of Doing (WoTWoD) cultural respect framework improves clinically appropriate anticipatory care in general practice and the cultural respect levels of medical practice staff. Mixed methods, cluster randomised controlled trial with a participatory action research approach. Fifty-six general practices in Sydney and Melbourne, 2014-2017. WoTWoD encompasses a toolkit (ten scenarios illustrating cross-cultural behaviour in clinical practice), one half-day workshop, cultural mentor support for practices, and a local care partnership between participating Medicare locals/primary health networks and local Aboriginal Community Controlled Health Services for guiding the program and facilitating community engagement. The intervention lasted 12 months at each practice. Rates of claims for MBS item 715 (health assessment for Aboriginal and Torres Strait Islander People) and recording of chronic disease risk factors; changes in cultural quotient (CQ) scores of practice staff. Complete results were available for 28 intervention (135 GPs, 807 Indigenous patients) and 25 control practices (210 GPs, 1554 Indigenous patients). 12-Month rates of MBS item 715 claims and recording of risk factors for the two groups were not statistically significantly different, nor were mean changes in CQ scores, regardless of staff category and practice attributes. The WoTWoD program did not increase the rate of Indigenous health checks or improve cultural respect scores in general practice. Conceptual, methodologic, and contextual factors that influence cultural mentorship, culturally respectful clinical practice, and Indigenous health care require further investigation. Australia New Zealand Clinical Trials Registry ACTRN12614000797673.

Growth, pubertal development, and skeletal health in boys with Duchenne Muscular Dystrophy.

Glucocorticoid therapy is currently the most widely used treatment for Duchenne muscular dystrophy (DMD), having consistently shown to prolong ambulation by 2 years, reduce the frequency of scoliosis, and improve cardiorespiratory function. Among the most frequent side effects of glucocorticoids are fractures due to osteoporosis, linear growth retardation or arrest, and pubertal delay, the subjects of this review. The diagnosis of osteoporosis has shifted in recent years away from a bone mineral density-centric to a fracture-focused approach, with particular emphasis on early vertebral fracture identification (one of the key triggers for osteoporosis intervention). Delayed puberty should be addressed in an age-appropriate manner, with numerous options available for sex steroid replacement. Growth impairment, however, is a more challenging complication of glucocorticoid-treated DMD, one that is most likely best addressed through growth-sparing therapies that target the dystrophinopathy. With glucocorticoid prescription an increasingly prevalent component of DMD care, early attention to management of osteoporosis and delayed puberty are important components of multidisciplinary and anticipatory care. The treatment of short stature remains controversial, with no accepted therapy currently available to over-ride the toxic effects of glucocorticoids on the growth axis.

Anticipatory Care in Potentially Preventable Hospitalizations: Making Data Sense of Complex Health Journeys.

Purpose: Potentially preventable hospitalizations (PPH) are minimized when adults (usually with multiple morbidities ± frailty) benefit from alternatives to emergency hospital use. A complex systems and anticipatory journey approach to PPH, the Patient Journey Record System (PaJR) is proposed.Application: PaJR is a web-based service supporting ≥weekly telephone calls by trained lay Care Guides (CG) to individuals at risk of PPH. The Victorian HealthLinks Chronic Care algorithm provides case finding from hospital big data. Prediction algorithms on call data helps optimize emergency hospital use through adaptive and anticipatory care. MonashWatch deployment incorporating PaJR is conducted by Monash Health in its Dandenong urban catchment area, Victoria, Australia.Theory: A Complex Adaptive Systems (CAS) framework underpins PaJR, and recognizes unique individual journeys, their dependence on historical and biopsychosocial influences, and difficult to predict tipping points. Rosen's modeling relationship and anticipation theory additionally informed the CAS framework with data sense-making and care delivery. PaJR uses perceptions of current and future health (interoception) through ongoing conversations to anticipate possible tipping points. This allows for possible timely intervention in trajectories in the biopsychosocial dimensions of patients as “particulars” in their unique trajectories.Evaluation: Monash Watch is actively monitoring 272 of 376 intervention patients, with 195 controls over 22 months (ongoing). Trajectories of poor health (SRH) and anticipation of worse/uncertain health (AH), and CG concerns statistically shifted at a tipping point, 3 days before admission in the subset who experienced ≥1 acute admission. The −3 day point was generally consistent across age and gender. Three randomly selected case studies demonstrate the processes of anticipatory and reactive care. PaJR-supported services achieved higher than pre-set targets—consistent reduction in acute bed days (20–25%) vs. target 10% and high levels of patient satisfaction.Discussion: Anticipatory care is an emerging trajectory data analytic approach that uses human sense-making as its core metric demonstrates improvements in processes and outcomes. Multiple sources can provide big data to inform trajectory care, however simple tailored data collections may prove effective if they embrace human interoception and anticipation. Admission risk may be addressed with a simple data collections including SRH, AH, and CG perceptions, where practical.Conclusion: Anticipatory care, as operationalized through PaJR approaches applied in MonashWatch, demonstrates processes and outcomes that successfully ameliorate PPH.

Commentary on "Progression of Ankle Plantarflexion Contractures and Functional Decline in Duchenne Muscular Dystrophy: Implications for Physical Therapy Management".

“How might I apply this information?” This information can be best applied by establishing early and ongoing intervention programs to minimize development of plantar flexor contractures in individuals with Duchenne muscular dystrophy (DMD) and being aware of trends and correlations suggesting the need for additional interventions. Trends reported showed progressive decline in ankle dorsiflexion passive range of motion (PROM) with age, progressive functional decline after 7 years of age as measured by North Star Ambulatory Assessment (NSAA), and correlation between functional decline and decline in ankle dorsiflexion PROM. Understanding and acting on the relationship between contracture and functional losses are critical in providing preventive, anticipatory care in DMD as shown across all ages in this study. Decreases in ankle dorsiflexion PROM emerged before the age of 7 years despite increasing function, supporting the importance of initiating early preventive intervention to minimize contracture development rather than waiting for functional losses, especially in those younger than 7 years. Older individuals who were walking had less extreme ranges of plantar flexor contracture than those 7 to 15 years of age despite lower NSAA functional scores, highlighting the functional importance of minimizing plantar flexor contractures over time, with adequate dorsiflexion range a potential requirement for walking with increased age and weakness. Challenges in preventing plantar flexor contractures, evidenced by variability in the data, support the need for comprehensive individualized approaches described, including home stretching, regular direct skilled physical therapy, orthotic intervention, serial casting, optimal positioning, supported standing, and assessment of PROM and muscle extensibility with sufficient frequency to identify needs for additional interventions. “What I might be mindful of when applying this information?” Individual correlations between ankle dorsiflexion PROM, functional scores, walking status, genetic mutations, steroid use, and therapeutic intervention in participants were not reported, details that might provide insight into individual interactions between factors in the successful prevention of plantar flexor contractures and optimizing function. Laura E. Case, PT, DPT, MS, PCS Doctor of Physical Therapy Division Duke University School of Medicine Durham, North Carolina Julie Coats, PT, DPT Department of Physical Therapy and Occupational Therapy Duke University Medical Center Durham, North Carolina

Acceptability of Paper-Based Advance Care Planning (ACP) to Inform End-of-Life Care Provision for Community Dwelling Older Adults: A Qualitative Interview Study.

This paper reports the findings from a study to investigate health care professionals’ views regarding the use and acceptability of two similar paper-based advance care planning (ACP) documents designed for older adults in their last year of life to inform end-of-life care provision. Participants’ views of using PEACE (Proactive Elderly Persons Advisory Care), a nurse led model with community geriatrician oversight, and PACe (proactive anticipatory care plan), a general practitioner (GP) led model implemented by two clinical commissioning groups (CCGs) as part of a wider pilot to determine their ability to improve end-of-life care provision, were explored. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. Telephone interviews were conducted with GPs to explore their views of PACe. GPs and admission avoidance matrons were employed by CCGs and all study participants were recruited from the South East of England, where data collection took place in 2015. The data were analysed thematically. Findings from the study demonstrate how both tools provide a focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable such conversations in the first place. Both tools enabled participants to think critically and reflect on their own practice. Notwithstanding participants’ views to improve their layout, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a potential barrier, and highlighted problems with accessing paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpinning ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care, was put forward as a way forward.

Delivering Hospice Level Care for Palliative Inpatients at a District General Hospital

The Record of End of Life Care (RELC) is an initiative within NHS Lanarkshire to improve the documentation of care of palliative patients in the last days of life. Our aim was to achieve hospice level care in the hospital setting. Three wards were chosen to pilot the Record of End of Life Care – Cardiology, Respiratory and Renal at a 500 bedded District General Hospital in Scotland. A retrospective 3 month review of deaths was undertaken. Each death was allocated a score out of 12 (this was named the 12Score). The highest possible score was 12 indicating there was documented evidence for 12 agreed domains of care. Following this the RELC was introduced to ward staff. A number of interventions were piloted with varying success. Notably, a weekly Mortality Meeting was instituted. This was nurse led to achieve continuity but all members of staff participated. Also, an anticipatory care form was created for chronic conditions. Overall a culture of reflective practice was promoted with relation to end of life care. 38 deaths occurred in the initial review period. The patients with the highest scores all had either a Cancer Diagnosis or Specialist Palliative Care (SPC) Team involvement. All patients with a score of 0 to 6 were either Non-malignant patients or did not have SPC involvement. Since introducing the RELC and subsequent interventions, 12Scores have improved. Of all the patients whose care was guided by the RELC, the lowest score was 7 and 50% were greater than 10. In addition to this, Non-malignant deaths and deaths without SPC involvement are now achieving scores of greater than 7. Death is invariably subjective however, guidance on exemplary practice alongside a shift in culture allows us to assess, document and improve on the quality of care delivered.

Type 1 Diabetes in Children and Adolescents: A Position Statement by the American Diabetes Association.

Since the American Diabetes Association (ADA) published the Position Statement “Care of Children and Adolescents With Type 1 Diabetes” (1) in 2005, innovations have transformed the landscape and management of type 1 diabetes: novel autoantibodies, sophisticated devices for delivering insulin and measuring glucose, and diabetes registries. However, strategies to prevent or delay type 1 diabetes in youth remain elusive, and meanwhile the number of affected children continues to grow. The SEARCH for Diabetes in Youth (SEARCH) study found a 21.1% rise in the prevalence of type 1 diabetes from 2001 to 2009 in youth aged 0 through 19 years, with increases observed in all sex, age, and race/ethnic subgroups except those with the lowest prevalence (0–4 years old and American Indians) (2). Incidence has also increased; the adjusted risk for developing type 1 diabetes increased 1.4% annually between 2002 and 2012, with significant increases in all age-groups except those 0–4 years old (3). One theme of this Position Statement is that “children are not little adults”—pediatric-onset diabetes is different from adult diabetes because of its distinct epidemiology, pathophysiology, developmental considerations, and response to therapy (4,5). Diabetes management for children must not be extrapolated from adult diabetes care. In caring for children and adolescents, clinicians need to be mindful of the child’s evolving developmental stages and must adapt care to the child’s needs and circumstances. Timely anticipatory guidance and care coordination will enable a seamless child/adolescent/young adult transition for both the developing patient and his or her family. Although the ADA stopped developing new position statements in 2018 (6), this Position Statement was developed under the 2017 criteria (7) and provides recommendations for current standards of care for youth (children and adolescents) with type 1 diabetes. It is not intended to be an exhaustive compendium on all aspects …

Neuropsychiatric expression and catatonia in 22q11.2 deletion syndrome: An overview and case series.

Individuals with 22q11.2 deletion syndrome (22q11.2DS) are at elevated risk of developing treatable psychiatric and neurological disorders, including anxiety disorders, schizophrenia, seizures, and movement disorders, often beginning in adolescence or early to mid-adulthood. Here, we provide an overview of neuropsychiatric features associated with 22q11.2DS in adulthood. Results of a new case series of 13 individuals with 22q11.2DS and catatonic features together with 5 previously reported cases support a potential association of this serious psychomotor phenotype with the 22q11.2 deletion. As in the general population, catatonic features in 22q11.2DS occurred in individuals with schizophrenia, other psychotic and non-psychotic psychiatric disorders, and neurological disorders like Parkinson's disease. We place the results in the context of an updated review of catatonia in other genetic conditions. The complex neuropsychiatric expression and risk profile of 22q11.2DS highlights the need to consider co-morbid factors and provide care tailored to the individual patient. The results reinforce the need for periodic monitoring for the emergence of psychiatric and neurological manifestations including catatonic features. Pending further research, enhanced recognition and informed anticipatory care promise to facilitate the early diagnosis that allows for timely implementation and optimization of effective treatments.