The mission of the Cerebral Palsy Foundation (CPF) is to be a catalyst for creating positive change for the 17 million people with cerebral palsy around the world. This is done by linking people with CP and their care partners to experts and great thinkers in the world of CP. We welcome Rachel Byrne, Executive Director of the Cerebral Palsy Foundation as a guest editor for this Cerebral Palsy Special Edition. Rachel has been working in the field of pediatric rehabilitation and CP research for the past 17 years. She has a background in physical therapy (PT), with a particular interest in neuroplasticity and motor learning. Her early career as a clinician delivering PT services in schools, hospitals, and private practice is underpinned by her research interests focused on implementation science, knowledge translation, and the impact on a person’s ability to participate in the community across the lifespan. At the Foundation, she has continued her research pursuits and has been instrumental in implementing early detection of and intervention for CP across the US, promoting inclusion in schools, and steering adult research for CP. As guest editor of the Journal of Pediatric Rehabilitation Medicine’s (JPRM) Special Edition on Cerebral Palsy, Rachel’s contributions enrich this publication by helping to bring the knowledge and expertise contained herein directly to the individuals most impacted by this condition. Cerebral palsy (CP) is defined as a disorder of movement and posture due to a non-progressive lesion to an immature brain [1]. As such, children with CP may deal with movement problems which are commonly related to spasticity. Because a standardized clinical pathway for managing spasticity does not exist to guide providers toward optimal care for people with CP, there is significant variability in the care provided to these individuals. This variability also exists partly because no single medication, intervention, or surgery manages spasticity perfectly throughout the lifespan. Additionally, existing surgical and pharmacological treatments come with their own side effects and adverse events, which can sometimes compromise function. These challenges can be exacerbated in child-onset conditions, making spasticity management particularly difficult in individuals with CP. When individuals are young, it is common to start with conservative/non-invasive treatment such as physical therapy, occupational therapy, or orthoses. As the child grows and their developmental tasks become more nuanced, additional treatment modalities may be needed beyond the therapies and bracing that have already been initiated. However, determining the additional treatment modalities to layer-on can be challenging, since there are not specific guidelines for spasticity management. Thus, clinicians rely on their training and experience rather than a standardized clinical pathway. There’s a body of research demonstrating the efficacy of botulinum toxin injections and surgical interventions for spasticity management and little research showing the efficacy of various enteral medications. Despite this, enteral baclofen has been used as a mainstay of spasticity management and was approved by the FDA for the same. Despite its side effects, many clinicians consider baclofen as the first line drug to treat spasticity in children with CP. Given the lack of systematicallycollected data, it is extremely important for clinicians to consider experts’ experiences and rationales regarding enteral baclofen use when selecting their interventions. We invited three experts on spasticity management to share their experiences and ratio-

Background: Acute flaccid myelitis (AFM) is a childhood illness characterized by sudden-onset weakness impairing function. The primary goal was to compare the motor recovery patterns of patients with AFM who were discharged home or to inpatient rehabilitation. Secondary analyses focused on recovery of respiratory status, nutritional status, and neurogenic bowel and bladder in both cohorts.Methods: Eleven tertiary care centers in the United States performed a retrospective chart review of children with AFM between January 1, 2014, and October 1, 2019. Data included demographics, treat-ments, and outcomes on admission, discharge, and follow-up visits.Results: Medical records of 109 children met inclusion criteria; 67 children required inpatient rehabili-tation, whereas 42 children were discharged directly home. The median age was 5 years (range 4 months to 17 years), and the median time observed was 417 days (interquartile range = 645 days). Distal upper extremities recovered better than the proximal upper extremities. At acute presentation, children who needed inpatient rehabilitation had significantly higher rates of respiratory support (P < 0.001), nutri-tional support (P < 0.001), and neurogenic bowel (P = 0.004) and bladder (P = 0.002). At follow-up, those who attended inpatient rehabilitation continued to have higher rates of respiratory support (28% vs 12%, P = 0.043); however, the nutritional status and bowel/bladder function were no longer statistically different.Conclusions: All children made improvements in strength. Proximal muscles remained weaker than distal muscles in the upper extremities. Children who qualified for inpatient rehabilitation had ongoing respiratory needs at follow-up; however, recovery of nutritional status and bowel/bladder were similar.& COPY; 2023 Elsevier Inc. All rights reserved.

Abstract Purpose To explore the processes of community reintegration of children and families at least one year following a paediatric brain injury from the perspective of caregivers and outpatient/community service providers. Materials and methods A qualitative analysis of semi-structured interviews from outpatient or community service providers (N = 14; occupational, physical, and speech and language therapists, neuropsychologists, school counsellors, recreational providers) and caregivers of six children (N = 8) at least one year after their injury. Interviews were transcribed and thematically coded using deductive (employing Bronfenbrenner’s ecological systems theory) and inductive approaches. Results Themes from both providers and caregivers indicated additional supports needed at all levels of Bronfenbrenner’s ecological systems theory (i.e., individual, microsystem, mesosystem/exosystem, macrosystem, chronosystem). Participants felt that several characteristics would be needed in an ideal service system following paediatric brain injury including: community solutions (“it takes a village”), long-term approaches to care, and new financial approaches. Conclusions The results suggest that children and families have substantial community reintegration needs following paediatric brain injury. Multi-system interventions are needed to support long-term community reintegration, especially those that increase communication and support transitions. There is also a strong need for alternative funding to support these efforts. Implications for Rehabilitation Families with a child with a moderate to severe brain injury face challenges with community reintegration a year or more after their child’s injury. Effort should be put into helping families navigate the complex medical, insurance, and school systems with a navigator service and step-down care to ensure a continuum of care and to support community reintegration. Special support should be provided during transitions, such as transitions from hospital care to outpatient care, and across school transitions.

Numerous studies have reported neuroprotective and procognitive effects of estrogens. The estrogen 17β-estradiol (E2) activates both the classical nuclear estrogen receptors ERα and ERβ as well as the G protein-coupled estrogen receptor (GPER). The differential effects of targeting the classical estrogen receptors over GPER are not well-understood. A limited number of selective GPER compounds have been described. In this study, 10 novel compounds were synthesized and exhibited half-maximal effective concentration values greater than the known GPER agonist G-1 in calcium mobilization assays performed in nonadherent HL-60 cells. Of these compounds, 2-cyclohexyl-4-isopropyl-N-((5-(tetrahydro-2H-pyran-2-yl)furan-2-yl)methyl)aniline, referred to as CITFA, significantly increased axonal and dendritic growth in neurons extracted from embryonic day 18 (E18) fetal rat hippocampal neurons. Confirmation of the results was performed by treating E18 hippocampal neurons with known GPER-selective antagonist G-36 and challenging with either E2, G-1, or CITFA. Results from these studies revealed an indistinguishable difference in neurite outgrowth between the treatment and control groups, exhibiting that neurite outgrowth in response to G-1 and CITFA originates from GPER activation and can be abolished with pretreatment of an antagonist. Subsequent docking studies using a homology model of GPER showed unique docking poses between G-1 and CIFTA. While docking poses differed between the ligands, CIFTA exhibited more favorable distance, bond angle, and strain for hydrogen-bonding and hydrophobic interactions.

Cancer-related cognitive impairment (CRCI) is a major neurotoxicity affecting more than 50% of cancer survivors. The underpinning mechanisms are mostly unknown, and there are no FDA-approved interventions. Sphingolipidomic analysis of mouse prefrontal cortex and hippocampus, key sites of cognitive function, revealed that cisplatin increased levels of the potent signaling molecule sphingosine-1-phosphate (S1P) and led to cognitive impairment. At the biochemical level, S1P induced mitochondrial dysfunction, activation of NOD-, LRR-, and pyrin domain–containing protein 3 inflammasomes, and increased IL-1β formation. These events were attenuated by systemic administration of the functional S1P receptor 1 (S1PR1) antagonist FTY720, which also attenuated cognitive impairment without adversely affecting locomotor activity. Similar attenuation was observed with ozanimod, another FDA-approved functional S1PR1 antagonist. Mice with astrocyte-specific deletion of S1pr1 lost their ability to respond to FTY720, implicating involvement of astrocytic S1PR1. Remarkably, our pharmacological and genetic approaches, coupled with computational modeling studies, revealed that cisplatin increased S1P production by activating TLR4. Collectively, our results identify the molecular mechanisms engaged by the S1P/S1PR1 axis in CRCI and establish S1PR1 antagonism as an approach to target CRCI with therapeutics that have fast-track clinical application.

Welcome to the third special Cerebral Palsy (CP) focused issue of the Journal of Pediatric Rehabilitation Medicine (JPRM). Mike and I are delighted to have such a volume of high-quality work to present this year. As promised, this annual special issue includes Needle Tips, Hot Topics, and human-TIES, along with original articles on topics related to CP. This year’s Needle Tips include two selections. The first article uses a case-based approach to discuss consideration of a child who is a non-responder emphasizing a precision medicine perspective in the context of current rehabilitation practice. We hope this case-based approach is helpful and well received. If you have cases that are of interest or if you would like to send us a challenge to confuse the gurus . . . We welcome those for future issues! The second selection comes as a cautionary reminder of the interface between medicine and the law. This topic is rarely discussed but is an unfortunate potential reality for injectors who use neurotoxins in vulnerable populations. The article explores the discussion with two scenarios that led to encounters with the legal system. The author highlights key issues of safe patient practices, and then proceeds with a practical discussion of the legal process. Everyone is mindful of the negative impact that litigation has on the entire health care system, so we thank the authors for including important

Botulinum toxin has been used in medicine for the past 30 years. However, there continues to be controversy about the appropriate uses and dosing, especially in the pediatric population. A panel of nine pediatric physiatrists from different regions and previous training programs in the United States were nominated based on institutional reputation and botulinum toxin (BoNT) experience. Based on a review of the current literature, the goal was to provide the rationale for recommendations on the administration of BoNT in the pediatric population. The goal was not only to review safety, dosing, and injection techniques but also to develop a consensus on the appropriate uses in the pediatric population. In addition to upper and lower limb spasticity, the consensus also provides recommendations for congenital muscular torticollis, cervical dystonia, sialorrhea, and brachial plexus palsies.

High rates of comorbid chronic pain, anxiety, and mood disorders among individuals with the Ehlers-Danlos syndromes (EDS+) are becoming increasingly recognized, though this complex symptomology remains poorly understood and undertreated. The current project examined whether interoceptive attention regulation is protective against depressive and anxiety symptoms in individuals with suspected EDS+. Data were collected from individuals participating in a transdisciplinary diagnostic visit within an EDS+ specialty consultation clinic. Participants were included in the current analyses (n = 49) if they had complete data on the following measures: the PHQ-8, the GAD-7, the Pain Severity subscale from the West Haven-Yale Multidimensional Pain Inventory, and the Attention Regulation subscale from the Multidimensional Assessment of Interoceptive Awareness. Consistent with expectations, the sample showed high levels of clinically significant anxiety and depressive symptoms. Pain severity ratings were significantly correlated with depressive but not anxiety severity. Moreover, higher levels of perceived interoceptive attention regulation abilities were significantly associated with less severe anxiety and depressive symptoms; however, attention regulation did not moderate the associations of pain with anxiety and depressive symptom severity. CONCLUSIONS The current project replicated recent findings that pain, anxiety, and depression are common in individuals with EDS+. The ability to focus and control somatic attention appears to be protective and a potential target for interventions in EDS+.

The G‐protein estrogen receptor (GPER) has been implicated in a variety of disease states and conditions. Previously our group identified a novel GPER antagonist, CIMBA, that showed improved potency as compared to the G‐series antagonist, G‐36, and exhibited the ability to reduce the formation of gallstone in a murine model. Additional modifications were made to the CIMBA scaffold to improve potency and enhance solubility. In this study, particular emphasis was placed on examining the replacement of the cyclohexyl moiety in CIMBA. Groups explored included various cyclic aliphatic systems, aliphatic chains, conjugated ring systems, piperazine, piperidine, and morpholine. Additional modifications explored the tolerance of the additional groups at the methoxy of CIMBA as well as linker modifications. Compounds were initially screened for calcium mobilization at 10 mM. All compounds exhibiting either agonism or antagonism at 10 mM were screened further to determine the appropriate EC50 or IC50 values. In this series of compounds, it was determined that the absence of the amine in the linker was detrimental to activity. Additionally, the replacement of the cyclohexyl ring in CIMBA with a piperazine (referred to as PIMBA), showed improved aqueous solubility above 10 mM without effecting the potency drastically. Off‐target binding to the nuclear estrogen receptors, ERa and ERb, was determined with a fluorescence polarization. The improved solubility of PIMBA may increase the success of in vivo studies utilizing GPER‐specific ligands in understanding the pharmacology of the receptor in different disease states.

Intrathecal baclofen pumps are commonly used in pediatric patients with spastic cerebral palsy. Baclofen binds to γ-aminobutyric acid receptors to inhibit both monosynaptic and polysynaptic reflexes at the spinal cord level. The blockade stops the release of excitatory transmitters and thereby decreases muscle contraction. It is commonly used for lower limb spasticity and has been shown to improve postural ability and functional status. The US Food and Drug Administration has approved baclofen for the treatment of spasticity of cerebral or spinal origin in adult and pediatric patients 4 years or older. Various complications of baclofen pumps are described in the literature. Immediately after surgery, problems from infection can arise and range from superficial skin infections to meningitis and bacteremia. Another early complication includes cerebrospinal fluid leak that can be observed by notable swelling beneath the lumbar incision. Additional problems that arise later are usually from the mechanics of the pump and catheter. Pump-related complications include failure, migration, and flipping. Catheter-related complications include disconnection, occlusion, fracture, or kink. Most of these complications typically lead to baclofen withdrawal, although there are a few case reports of overdose due to mechanical causes. Here we describe 2 cases of individuals experiencing complications of excessive baclofen exposure after significant changes in the atmospheric pressure due to travel involving ambient altitude change. These cases reflect the need to discuss this potential complication with families and patients with baclofen pumps before travel to high elevations.

About a dozen years ago, I took the lead on surveying clinical and nonclinical staff members at the Rehabilitation Institute of Chicago (now the Shirley Ryan AbilityLab) about their perceived moral distress 1. My colleagues and I asked, “We are interested in learning about the issues that create a sense of moral distress in your daily professional life. What types of situations are troubling for you because of your beliefs about what is right and wrong? What is troubling to you because of conflicts of values?” The results were published in this Journal in 2009 and for many years the data guided the priorities and focus of our ethics initiatives. The literature on moral distress has continued to grow since then and is relevant for all of us working in health care. For this column, I have invited Andy Kondrat, PhD, to be a guest editor. Dr Kondrat's doctoral dissertation in Philosophy was titled “Moral Distress and the Health Care Organization,” and he has continued to immerse himself in the theoretical, interpersonal, and institutional aspects of this topic through his research, observation, and practice. He has been working as a Bioethicist at the Shirley Ryan AbilityLab for several years and will be joining the faculty of the Center for Healthcare Ethics at Cedars-Sinai Medical Center in Los Angeles in July 2017. As always, I welcome suggestions and comments about the Ethical Legal column and can be reached at dmukherjee@sralab.org. Andy Kondrat, PhD Cedars-Sinai Medical Center Moral distress was first defined by Andrew Jameton in 1984 as occurring “when one knows the right thing to do, but institutional constraints make it nearly impossible to pursue the right course of action” 1. Over the subsequent decades, a body of literature has been built considering and conceptualizing moral distress, yet its meaning hasn't strayed far from Jameton's original: A recent definition states that moral distress “occurs when providers believe that they are being involuntarily complicit in acting unethically—they are doing something that they believe to be morally wrong but have little power to act differently or to change the situation” 2. Although the literature on moral distress began and grew within the context of nursing practice and nursing ethics, it is now accepted widely that all health care professionals are at risk of experiencing moral distress. Indeed, my own interest in examining moral distress arose from an interaction with a critical care intensivist. During my training, I watched as a clinical ethics consultant was involved in a particularly difficult case in the intensive care unit, in which the family was demanding life-prolonging treatment that the whole team felt to be inappropriate (they may have even considered the treatment not life-prolonging, but death-delaying). At the end of the consult—which resulted in the team being unable to change the family's mind—the attending of the intensive care unit, clearly distraught and disheartened, expressed his deep frustration at the situation and then sighed to the clinical ethics consultant, “I just don't see how you can do this every day.” This was the first time that I had heard someone ostensibly “in charge” expressing their moral distress, and it was at that point I realized the (admittedly obvious) truth that all health care professionals need the space to think about their own experiences of moral distress and ways to address future occurrences. The causes of moral distress are many, but its symptoms are what make it such an important concept to understand. Moral distress, when allowed to grow and compound over time, comes with a host of detrimental effects on clinicians, health care organizations, and patient care. Epstein and Hamric state that, “Although there is a high degree of individual variation in how moral distress manifests itself, the psychological characteristics of moral distress have been described consistently as involving frustration, anger, guilt, anxiety, withdrawal, and self-blame” 3. Moral distress eventually can lead to professional burnout and thus has an effect on the health care team, as communication and collaboration among team members become strained. These effects, in turn, directly affect patient care. For example, in one study morally distressed nurses were found to “lose their capacity for caring, avoid patient contact, and fail to give good physical care; they…physically withdraw from the bedside, barely meeting the patient's needs” 4. Another analysis found that when morally distressed clinicians are asked to care for patients, “increased pain, longer hospital stays, and inadequate and inappropriate care” can result 5. In this column, we offer 3 perspectives to better understand and appreciate the experience of moral distress in physical medicine and rehabilitation (PM&R). In the first, physiatrist Michael Green, DO, Attending Physician in Pediatric Rehabilitation at the University of Utah/Primary Children's Hospital, will discuss his first-hand experiences of moral distress in the rehabilitation setting and how he has learned to address these experiences. In the second, Mark R. Wicclair, PhD, Professor of Philosophy at West Virginia University and Adjunct Professor of Medicine at the University of Pittsburgh, defines moral distress in contrast to conscientious objection in health care. This comparison is helpful so that clinicians can have a better awareness of what they may be experiencing in response to patient care in which they disagree in some way, in order to address it properly. Finally, Lucia D. Wocial, PhD, RN, Adjunct Assistant Professor at Indiana University School of Nursing and Nurse Ethicist at Indiana University Health, unpacks the complexities of a moral distress experience in PM&R health care professionals—and notes hazards that may be specific to those clinicians who care for patients over long periods of time. Hopefully, these 3 pieces will help you better to identify your own experiences of moral distress when they occur and give you tools to begin thinking about how to address them. Michael M. Green, DO University of Utah/Primary Children's Hospital A young man has had a severe brain injury, rendering him minimally conscious. As a PM&R resident, I see him on a daily basis in the acute care hospital, educating his family and making recommendations regarding his care. He demonstrates some improvement and appears to be an excellent candidate for inpatient rehabilitation, which I recommend. However, citing a lack of medical necessity, the insurance company denies the transfer. The attending physician appeals the decision, to no avail, and my patient will have to transfer to a nursing facility. The family is devastated, and I am left frustrated and discouraged. I know the care that my patient needs yet I feel powerless to help him receive it. This situation was one of my first professional experiences of what I later learned to call moral distress. In this situation, the entire clinical team caring for the patient agreed that he required inpatient rehabilitation. And yet we found that we could not put into effect the course of action our patient so clearly needed. Our values as professionals were in conflict with the situation in which we found ourselves. As I progressed in my training, I had other experiences of moral distress. Although I was aware of the negative reactions I was experiencing, I struggled to understand and articulate their nature and source. And, despite the ubiquity of these situations, I found that my training program did not explicitly address these experiences. I also found that the rehabilitation team itself lacked both the ability to name the experience as well as the vocabulary to discuss it. In a study of moral distress in rehabilitation professionals, the authors found numerous situations that resulted in moral distress 1. They identified 3 broad categories of moral distress: institutional ethics (which related to the health care environment), professional practice (involving codes of behavior and professionalism), and clinical decision-making. Thus, there are many types of cases in which rehabilitation providers might experience moral distress. It could be caused by the way that a patient's discharge destination is determined by the family's resources. For example, a patient's family does not have the resources to care for their loved one at home and, as a result, the patient is discharged to a skilled nursing facility. Or, if the patient is discharged home, the family may lack the skills and knowledge to optimally care for their loved one 2. Alternatively, moral distress can be related to a health care provider's inability to provide the best medical intervention to promote a patient's independence due to social, family, insurance, or logistical constraints, for instance, when a patient's insurance company will not cover a spasticity-management procedure to allow her to progress in multiple areas of therapy, causing a delay in her recovery and possibly contributing to further complications and functional decline. As the aforementioned cases indicate, moral distress clearly affects health care providers, causing stress and reducing professional satisfaction. The cumulative effect of repeated episodes can lead to provider burnout 3, even in physician trainees. However, the effect of moral distress extends beyond the health care professional. It can affect the quality of patient care provided by the practitioner. And frequent episodes can have significant effects on the health of an organization or institution, subtly warping its culture. Although I struggled with these unnamed ethical concerns early in my career, I eventually acquired the language and framework needed to understand and discuss the concept of moral distress while participating in a pediatric bioethics certificate course. During this course, I was encouraged to spend time analyzing some of my past decisions, ethical dilemmas, and experiences of moral distress, especially in the context of the 4 principles of bioethics: patient autonomy, nonmaleficence, beneficence, and justice. Similar to needing a diagnosis before developing a treatment plan, the mere ability to name this negative feeling—and why I was experiencing it—helped me to identify ways to address it. I found that being encouraged to consciously reflect on my experiences, and being provided a vocabulary to do so, not only helped illuminate my experiences but also helped to defuse some of the negative emotions that accompanied them. Although I now think routinely about these principles of bioethics when reflecting on an outcome that causes me moral distress 2, it is likely the act of conscious reflection that has been therapeutic, rather that the use of the principles themselves. However, individual reflection alone rarely is enough. Moral distress occurs in a social context, one characterized by a web of relationships. As a result, communication and mutual support are also effective ways of mitigating moral distress 4. Having discussions among the treatment team about the situation can help resolve the feelings of anxiety and powerlessness that arise from a morally distressing experience. This group discussion allows each member of the treatment team to affirm others' experiences of moral distress and as a group can offer ways to mitigate it or strategies to avoid it in the future. As with individual reflection, having a vocabulary is crucial in enabling these discussions between professionals. I was fortunate to have taken the bioethics course, which enabled me to recognize and name my experiences and provided me with the vocabulary to reflect on and discuss these experiences with others. Unfortunately, most PM&R residents and rehabilitation teams do not have these opportunities. But it should not take a bioethics course to help professionals (including trainees) and organizations understand and address situations of moral distress. As the authors of the study cited previously suggest, even the act of conducting an organizational survey (and reporting on its results) can help professionals recognize and discuss experiences of moral distress 1. Given these facts, it would make the most sense to introduce the concept of moral distress to health care professionals during their training. I wish that I had been exposed to these issues in my residency, if not in medical school. Clinical care is ineradicably ethical and, thus, moral distress is inevitable. Although the specific situations that provoke it will likely vary from field to field, practitioners will likely encounter these situations repeatedly throughout their career, putting them, their patients, and their organizations at risk. Ensuring clinicians learn about this concept and acquire a vocabulary to think about and discuss their experiences of moral distress with colleagues is the first step to mitigating it. If such education is included in training programs, maybe future PM&R residents won't struggle with moral distress quite as much as I did. Thank you for all of your support: Geneviève Olivier, Ana Durand-Sanchez, and Sunil Kothari. Mark R. Wicclair, PhD West Virginia University and University of Pittsburgh Like practitioners in other fields of health care, physiatrists can experience moral distress. It is also the case that if providing a medical service violates a deeply held moral belief, physiatrists can conscientiously object and refuse to provide it. Whereas moral distress can occasion conscientious objections, they are distinct phenomena. Physiatrists who practice in institutional settings can experience substantial moral distress because they are subject to constraints and obstacles that require them to compromise professional standards or provide less than optimal care. Moral distress also can result when physiatrists observe colleagues and staff provide less-than-optimal care due to institutional constraints and obstacles. The limitations imposed by third-party payors can be another significant source of moral distress. As its definition indicates, moral distress typically is associated with a sense of powerlessness—a perception that one is unable to do the right thing or to refrain from doing the wrong thing. Hence, moral distress can be experienced as diminished moral agency. By contrast, practitioners who engage in conscientious objection assert their moral agency by refusing to act in ways that they perceive to be morally wrong and insist on acting in ways that they perceive to be morally right. Like soldiers who refuse to obey an order for moral reasons, health professionals who refuse to provide a medical service that violates their moral convictions exert their moral agency. Moral distress is considerably more pervasive than conscientious objection. Typical acts of conscientious objection are limited to a few specific medical services, such as emergency contraception, family planning, abortion, palliative sedation to unconsciousness, and organ donation after circulatory determination of death. By contrast moral distress is a relatively widespread, everyday phenomenon. According to Hamric, it is “a nearly universal phenomenon in the everyday ethics arena” 1. Studies have identified a wide range of sources of moral distress, including harm to patients (eg, pain and suffering), treating patients as objects due to institutional requirements, health policy constraints, a failure to inform patients or family members of options, inadequate staffing, and cost containment 2. Moral distress typically arises when a clinician's judgment that something is morally troubling is based on established ethical and professional norms. Clinicians might feel pressured to act in ways that are incompatible with those norms; or they might believe that the actions of colleagues are contrary to them. By contrast, conscience-based objections typically arise when clinicians refuse to provide a legal and professionally accepted medical service within the scope of their clinical competence because it violates their personal moral/and or religious convictions. Each of the aforementioned medical services that typically trigger conscientious objections is legal and none are contrary to generally accepted ethical and professional norms. Acts of conscientious objection are conscience-based. As such, they are associated with a person's core ethical and/or religious beliefs and a person's identity or self-conception. Hence, to accept institutional controls and act against one's conscience is nothing less than an act of self-betrayal. By contrast, moral distress can arise when a health care professional observes or participates in actions that are perceived to be morally inappropriate. Active or passive participation in actions that are perceived to be inappropriate undeniably can give rise to a variety of painful psychological and emotional responses 1, 3. The frustration and anguish associated with moral distress should not be minimized. However, it is one thing to believe that one is acting inappropriately and quite another to believe that one is acting contrary to one's core ethical and/or religious beliefs and is engaging in an act of self-betrayal. Over time, cumulative moral distress can result in burnout and a decision to resign. By contrast, one instance of acting against one's conscience—an act of self-betrayal—can be devastating and unbearable. To be sure, it might be claimed that acting against one's conscience can give rise to extreme moral distress. However, such extreme instances should be distinguished from “everyday” moral distress. Health care facilities should have mechanisms for managing moral distress and conscientious objection. However, managing moral distress and conscientious objection call for different approaches. Facilities may be able to decrease moral distress by promoting a culture that encourages moral dialogue and reduces the sense of loss of moral agency. Concurrently, facilities also may decide to manage moral distress by establishing mechanisms to identify and correct significant moral deficiencies. For example, facilities might implement a process to enable practitioners to report concerns that give rise to moral distress to a designated individual or body (eg, a medical director or committee) without risking reprisals or disciplinary action. If this process reveals individual behavior or facility policies and practices that are contrary to established ethical and professional norms, corrective action may be warranted. For example, suppose a physiatrist's moral distress is a result of her belief that inadequate staffing levels and poorly trained staff are compromising patient care. If a review confirms the physiatrist's belief, corrective measures should be taken to bring the facility into compliance with established ethical and professional standards. The primary aim of managing conscientious objection is not to identify and correct practices and policies within a facility that violate established ethical and professional standards. Instead, the primary aim is to determine whether to accommodate clinicians who claim that it is against their core moral convictions to provide a medical service that is legal and consistent with established ethical and professional norms. The proper management of conscientious objections requires a process that (1) enables practitioners to request an accommodation; (2) specifies the individual or body (eg, a medical director or committee) who has the responsibility to determine whether to grant an exemption; and (3) specifies standards for determining whether accommodations will be granted. Facilities also might provide an opportunity for appealing denials. The following are among the appropriate factors to consider when determining whether exemptions are warranted: (1) whether an accommodation will have a significant negative impact on patients and family members (eg, interfere with timely access to information or medical services); and (2) whether an accommodation will result in excessive burdens to other clinicians and staff. Facilities should be prepared to properly manage moral distress and conscientious objection. However, in view of the medical services that are typically the targets of conscientious objections, physiatrists are more likely to experience moral distress. Therefore, it is imperative that facilities in which they practice establish policies and procedures that will reduce and properly manage moral distress. Lucia D. Wocial, PhD, RN Indiana University School of Nursing Although much of the work around moral distress relates to critical care and the classic hospital in-patient setting, it is foolish to believe that the experience of moral distress is confined only to people who practice in acute-care hospitals. At its core, moral distress is an experience with emotional, psychological, and physiological components rooted in a person's understanding of professional responsibilities. Thus, one must conclude that it can happen to any clinician in a variety of settings. I suspect the extended length of stay in rehabilitation, relative to acute care, and its resulting deeper interactions with patients and families can blur professional and personal boundaries, putting physical medicine and rehabilitation clinicians at risk for a particular, and complicated, form of moral distress. Perhaps one of the biggest challenges in regard to moral distress is helping people recognize that it is more than feeling badly in tragic circumstances. Health care providers are witness to much tragedy, and there are times when it feels something just isn't fair—something feels unjust—and that is distressing. Although this is an important acknowledgement of the struggles people face, it is not the same thing as experiencing moral distress over the right course of action for the patient in your care. The experience of moral distress in regard to one's professional obligation to address systems failures (eg, a social injustice) carries a very different obligation; one to society at large. The experience of moral distress represents an attack on one's integrity as a clinician. The frustration, anger, and guilt are born out of the knowledge that something or someone is preventing the clinician from acting in her best judgment. Moral distress is a complicated concept, rooted in how we perceive our obligations to patients. Learning to map moral distress, and what makes it different from “regular” distress, may put us in a better position to deal with it, and, if we are lucky, become better moral agents 1. When mapping moral distress in physical medicine and rehabilitation, we may ask why long lengths of stay could engender complicated moral distress. I suggest that because the emotional work of caring for patients—particularly when we are genuine in our interest for their well-being, and have time and opportunity to know them deeply as people—may lead us to do 2 things: (1) complicate our sense of professional responsibility and (2) alter our sense of what is right. This combination may lead clinicians to experience moral distress in cases where they are actually violating professional boundaries instead of fulfilling professional obligations. When one has long-term relationships with patients and their families, it is not uncommon to feel as though one has all the responsibility and none of the authority to make the right thing happen. In many ways, that is the epitome of a moral distress situation. Jameton refers to this as the delicate issue of conscience when the needs of the patient are pitted against the limitations of the institution (or perhaps the larger healthcare system) 2. The National Council of State Boards of Nursing refers to a zone of helpfulness when describing the ideal therapeutic relationship for nurses when maintaining professional boundaries 3. This sweet spot of boundary maintenance sits somewhere between under- and overinvolvement with patients. Unfortunately, there are no bright lines or alarms to warn us when we have crossed out of this zone of helpfulness, and it may become more difficult to maintain these boundaries the longer the length of the patient's stay. Policies and rules can provide solid boundaries for behavior, but there is no similar resource to bind our emotions. When one has cared for patients long enough to have developed a blurred sense of where professional boundaries lie (ie, that zone of helpfulness), one may be at greater risk for losing emotional objectivity when it comes to patients. The close relationship, with its complicated emotional attachments, may falsely bring a sense of clarity to what “the right thing to do” is and thus make us more prone to experiencing moral distress or worse, confusing a moral temptation with an ethical dilemma. Consider a situation when one is frustrated at an insurance claim denial, and a simple “fudge” on the paperwork will make it possible for the patient to receive the denied service. The moral temptation that comes with the emotional attachment to the patient may override a reasoned reflection on the fact that breaking a rule, however unjust, puts the clinician at risk because it breaks a law (fraud), cheats the insurance company, and in the end may not help the patient. In this scenario, although there is no “real” ethical dilemma, the clinician self-imposes one due to those blurred professional boundaries. Therefore, the long-term relationships complicate our sense of responsibility and cause us to have an inflated sense of duty when it comes to moral agency, thus leading us to think we have failed our duties when, in fact, external constraints are to blame. Although we have most likely fulfilled our professional obligations when we have advocated for further rehabilitation services, particularly postdischarge, this inflated sense of duty leads us to feel as if we have failed if the requests are denied. This sense of unjustness can be a cause of moral distress. However, when we have spoken up and advocated, we have not failed to do what is our obligation. We have maintained our integrity as a moral agent on behalf of the patient. The system has failed us, both because a patient may be denied something they truly need because of an insurance glitch or there are inadequate resources in the rural setting to which the patient will return postdischarge. Speaking from a nursing perspective, a system failure such as this is no doubt upsetting and appeals to our sense of injustice (fostered by nursing's social policy statement 4). If we are convinced that our professional responsibility, espoused in part by provision 8 in the Code of Ethics for Nurses (which includes protecting and promoting health initiatives), obligates us to advocate for change in the system, then we may certainly feel moral distress when the system doesn't “do” what we want it to do 5. However, it is important to recognize the distress is related to a system failure and not a failure of the individual clinician. When health care providers are involved in long-term relationships with patients, it is not uncommon for them to be celebrated for going above and beyond the normal standard of behavior (ie, boundary crossing) to meet a patient's needs. This may set a precedent for a standard that is in reality a boundary violation (outside the zone of helpfulness), yet somehow providers who do less than this supererogatory standard may feel they are failing to meet their obligations to the patient (and thus not doing what is right). Health care providers today are encouraged to move beyond a patient relationship that is characterized by detached concern to one that balances caring practice with technical expertise. This pushes clinicians to keep in balance emotional work (eg, genuine caring and concern) and technical expertise (typically kept at a respectful distance). This is hard work. A health care provider may believe she is experiencing moral distress, but on a closer evaluation of the circumstance the feelings of moral distress may dissipate when it is realized that the perceived “right thing to do” may in fact violate a professional standard, engendered by a heightened (yet false) sense of responsibility, and clearly be the wrong thing to do. Long-term relationships with patients in physical medicine and rehabilitation, when done well, will be complicated. Feelings of moral distress should not be ignored—rather, they should be explored. This demands that physical medicine and rehabilitation clinicians maintain a strong commitment to self-reflection and a willingness to engage in discussions with colleagues to maintain the delicate balance of fostering long-term relationships with patients that do not slip over the boundary and distort our sense of obligations to patients.

Background In 2014-2015, several regions of the United States experienced an outbreak of acute flaccid myelitis in pediatric patients. A common, unique feature was disease localization to the gray matter of the spinal cord. Methods We report 11 children, ages 13 months to 14 years (median 9 years), in the Intermountain West who presented with extremity weakness (n = 10) or cranial neuropathy (n = 1) of varying severity without an apparent etiology. Results All children experienced acute paralysis, and 10 had symptoms or signs that localized to the spinal cord. Maximum paralysis occurred within 4 days of onset in all patients. All had spinal gray matter lesions consistent with acute myelitis detected by magnetic resonance imaging; no single infectious cause was identified. Despite therapy with intravenous immunoglobulin, corticosteroids, or plasma exchange, nine of 10 (90%) children had motor deficits at follow-up. Conclusions Recognition of this disorder enables clinicians to obtain appropriate imaging and laboratory testing, initiate treatment, and provide families with accurate prognostic information. In contrast to other causes of acute flaccid paralysis in childhood, most children with acute flaccid myelitis have residual neurological deficits.

An ethical dimension exists in nearly all decisions made. Yet, there are clinical decisions in which the ethical dilemma is so difficult for the clinician that it results in moral distress. We present one example of a morally distressing situation in which care was provided for a child who had altered physical abilities after a trauma and was being discharged to a suboptimal family environment. Caring for a child with an acquired spinal cord injury requires significant resources. When a family is able to physically care for the child, but has demonstrated incomplete follow-through, the team is at risk for experiencing significant moral distress.

The senescence-accelerated mouse (SAMP8) strain exhibits an age-related decrease in memory accompanied by an increase in hippocampal amyloid-β protein precursor (AβPP) and amyloid-β peptide (Aβ). We have shown that administration of an antisense oligonucleotide against the Aβ region of AβPP (AβPP antisense) reverses the memory deficits. The purpose of this study was to determine the effect of peripheral (IV) administration of AβPP antisense on hippocampal gene expression. The AβPP antisense reversed the memory deficits and altered expression of 944 hippocampal genes. Pathway analysis showed significant gene expression changes in nine pathways. These include the MAPK signaling pathway (p = 0.0078) and the phosphatidylinositol signaling pathway (p = 0.043), which we have previously shown to be altered in SAMP8 mice. The changes in these pathways contributed to significant changes in the neurotropin (p = 0.0083) and insulin signaling (p = 0.015) pathways, which are known to be important in learning and memory. Changes in these pathways were accompanied by phosphorylation changes in the downstream target proteins p70S6K, GSK3β, ERK, and CREB. These changes in hippocampal gene expression and protein phosphorylation may suggest specific new targets for antisense therapy aimed at improving memory.

PURPOSE:Describe the case of a spinal arteriovenous malformation (AVM), which represents a rare cause for tetraplegia in the infant population.TREATMENT:This patient underwent treatment with surgical clipping of an intradural AVM, intravenous steroids, and inpatient rehabilitation.DISCUSSION:Although AVMs are a congenital vascular malformation, spinal AVMs are extremely rare with only a few case reports published in the pediatric literature. Generally AVMs are diagnosed intracranially which would lead to cerebral infarction; however, in this case, the AVM was in the cervical spinal cord leading to tetraplegia. With medical and rehabilitation interventions, the patient's function improved significantly; however, long-term prognostication remained difficult given the lack of standardized assessments and the inaccuracy of the American Spinal Injury Association (ASIA) examination for this age group.CONCLUSION:Spinal AVMs are extremely rare in the pediatric population; however, with this case the use of surgical intervention helped prevent further loss of neurologic impairment, and inpatient rehabilitation served to increase the patient's function. She continued to participate in outpatient rehabilitation to improve developmental milestones, mobility, posture, positioning, and upper limb function.