The Role of Specialty Palliative Care for Amyotrophic Lateral Sclerosis.

Amyotrophic Lateral Sclerosis (ALS) is a progressive and incurable neurodegenerative disease resulting in the loss of motor neurons, eventually leading to death. ALS results in complex physical, emotional, and spiritual care needs. Specialty Palliative Care (SPC) is a medical specialty for patients with serious illness that provides an extra layer of support through complicated symptom management, goals of care conversations, and support to patients and families during hard times. Using MEDLINE, APA Psychinfo, and Dynamed databases, we reviewed the literature of SPC in ALS to inform and support an expert opinion perspective on this topic. This manuscript focuses on several key areas of SPC for ALS including insurance and care models, advance care planning, symptom management, quality of life, caregiver support, and end-of-life care. Recommendations to improve specialty palliative care for patients with ALS are reviewed in the discussion section.

Healthcare Utilization for Stroke Patients at the End of Life: Nationally Representative Data.

Objectives Stroke and post-stroke complications are associated with high morbidity, mortality, and cost. Our objective was to examine healthcare utilization and hospice enrollment for stroke patients at the end of life. Materials and methods The 2014 Nationwide Readmissions Database is a national database of > 14 million admissions. We used validated ICD-9 codes to identify fatal ischemic stroke, summarized demographics and hospitalization characteristics, and examined healthcare use within 30 days before fatal stroke admission. We used de-identified 2014 Medicare hospice data to identify stroke and non-stroke patients admitted to hospice. Results Among IS admissions in 2014 (n = 472,969), 22652 (4.8%) had in-hospital death. 28.2% with fatal IS had two or more hospitalizations in 2014. Among those with fatal IS admission, 13.0% were admitted with cerebrovascular disease within 30 days of fatal IS admission. Half of stroke patients discharged to hospice from the Medicare dataset were hospitalized with cerebrovascular disease within the thirty days prior to hospice enrollment. Within the study year, 6.9% of hospice enrollees had one or more emergency room visits, 31.7% had one or more inpatient encounters, and 5.2% had one or more nursing facility encounters (compared to 21.4%, 70.6%, and 27.2% respectively in the 30-day period prior to enrollment). Conclusions High rates of readmission prior to fatal stroke may indicate opportunity for improvement in acute stroke management, secondary prevention, and palliative care involvement as encouraged by AHA/ASA guidelines. For patients who are expected to survive 6 months or less, hospice may offer goal-concordant services for patients and caregivers who desire comfort-focused care.

Variant Median Nerve Anatomy: Ultrasound Evidence of a Pseudoconduction Block.

INTRODUCTION: A conduction block at a noncompressible site warrants further investigation. METHODS AND MATERIALS: A 36-year-old woman with a history of Hodgkin lymphoma and chemotherapy-induced polyneuropathy developed bilateral hand numbness and paresthesias. Workup revealed bilateral carpal tunnel syndrome and an apparent superimposed conduction block of the median nerve in the forearm. Given the history of cancer, there was concern for an infiltrative or an immune-mediated process. RESULTS: Neuromuscular ultrasound demonstrated that the median nerve descended the upper extremity along an atypical path, deep along the posteromedial aspect of the upper arm, and relatively medially in the forearm. Ultrasound-directed nerve stimulation revealed there was no conduction block. This anatomical variant has been rarely described and has not been reported previously to mimic conduction block or been documented via ultrasound. CONCLUSIONS: This case demonstrates that neuromuscular ultrasound may supplement the electrodiagnostic study and limit confounding technical factors because of rare anatomic variation.

Management of Neuropathic Pain in the Geriatric Population.

Neuropathic pain is common in the geriatric population. Diagnosis requires a thorough history and physical examination to differentiate it from other types of pain. Once diagnosed, further workup is required to elucidate the cause, including potential reversible causes of neuropathy. When treating neuropathic pain in the elderly, it is important to consider patients' comorbidities and other medications to avoid drug-drug interactions and iatrogenic effects given the physiologic changes of drug metabolism in the elderly. Nonsystemic therapies and topical medications should be considered. Systemic medications should be started at low dose and titrated up slowly with frequent monitoring for adverse effects.

A critical review of the capsaicin 8% patch for the treatment of neuropathic pain associated with diabetic peripheral neuropathy of the feet in adults.

INTRODUCTION: Diabetes is an increasingly prevalent disorder affecting nearly 1-in-5 adults, of which half will experience diabetic peripheral neuropathy (DPN) and a quarter will suffer from diabetic peripheral nerve pain (DPNP), severely impacting quality of life. The currently approved treatment options are typically centrally acting agents whose use is limited by systemic effects and drug interactions. The capsaicin 8% dermal patch was recently approved by the U.S. FDA for the treatment of DPNP. AREAS COVERED: The authors review the available literature regarding the use of high-concentration capsaicin 8% patch for the treatment of diabetic peripheral neuropathy and neuropathic pain and discuss implementing its use in clinical practice. EXPERT OPINION: The high-concentration capsaicin 8% patch is an effective and well-tolerated treatment option for treating DPNP. Capsaicin 8% patch may be used alone or in combination with other oral therapies and can provide rapid and sustained neuropathic pain relief following a single application and is safe and effective when used long term.

Top Ten Tips Palliative Care Clinicians Should Know About Amyotrophic Lateral Sclerosis.

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive and fatal neurodegenerative disorder with enormous palliative care (PC) needs that begin at the time of diagnosis. Although it is an uncommon disease, clinicians who work in PC or hospice are likely to encounter ALS somewhat frequently given the needs of patients with ALS with regard to psychosocial support, symptom management, advance care planning (ACP), caregiver support, and end-of-life care. As such, PC clinicians should be familiar with the basic principles of ALS symptoms, treatments, disease course, and issues around ACP. This article, written by a team of neurologists and PC physicians, seeks to provide PC clinicians with tips to improve their comfort and skills caring for patients with ALS and their families.

The effect of pyridostigmine on small intestinal bacterial overgrowth (SIBO) and plasma inflammatory biomarkers in HIV-associated autonomic neuropathies.

Small intestinal bacterial overgrowth (SIBO) is common among patients with HIV-associated autonomic neuropathies (HIV-AN) and may be associated with increased bacterial translocation and elevated plasma inflammatory biomarkers. Pyridostigmine is an acetylcholinesterase inhibitor which has been used to augment autonomic signaling. We sought preliminary evidence as to whether pyridostigmine could improve proximal gastrointestinal motility, reduce SIBO, reduce plasma sCD14 (a marker of macrophage activation and indirect measure of translocation), and reduce the inflammatory cytokines IL-6 and TNFα in patients with HIV-AN. Fifteen participants with well-controlled HIV, HIV-AN, and SIBO were treated with 8 weeks of pyridostigmine (30 mg PO TID). Glucose breath testing for SIBO, gastric emptying studies (GES) to assess motility, plasma sCD14, IL-6, and TNFα, and gastrointestinal autonomic symptoms were compared before and after treatment. Thirteen participants (87%) experienced an improvement in SIBO following pyridostigmine treatment; with an average improvement of 50% (p = 0.016). There was no change in gastrointestinal motility; however, only two participants met GES criteria for gastroparesis at baseline. TNFα and sCD14 levels declined by 12% (p = 0.004) and 19% (p = 0.015), respectively; there was no significant change in IL-6 or gastrointestinal symptoms. Pyridostigmine may ameliorate SIBO and reduce levels of sCD14 and TNFα in patients with HIV-AN. Larger placebo-controlled studies are needed to definitively delineate how HIV-AN affects gastrointestinal motility, SIBO, and systemic inflammation in HIV, and whether treatment improves clinical outcomes.

Vagal dysfunction and small intestinal bacterial overgrowth: novel pathways to chronic inflammation in HIV.

OBJECTIVE: Chronic inflammation in HIV-infected individuals drives disease progression and the development of comorbidities, despite viral suppression with combined antiretroviral therapy. Here, we sought evidence that vagal dysfunction, which occurs commonly as part of HIV-associated autonomic neuropathy, could exacerbate inflammation through gastrointestinal dysmotility, small intestinal bacterial overgrowth (SIBO), and alterations in patterns of soluble immune mediators. DESIGN: This is a cross-sectional observational study. METHODS: Forty participants on stable combined antiretroviral therapy with gastrointestinal symptoms, and no causes for vagal or gastrointestinal dysfunction other than HIV, underwent autonomic testing, hydrogen/methane breath testing for SIBO, and gastric emptying scintigraphy. A panel of 41 cytokines, high-mobility group box 1, and markers of bacterial translocation (lipopolysaccharide) and monocyte/macrophage activation (sCD14 and sCD163) were tested in plasma. RESULTS: We found that participants with vagal dysfunction had delayed gastric emptying and higher prevalence of SIBO. SIBO was associated with IL-6, but not sCD14; lipopolysaccharide could not be detected in any participant. We also found alteration of cytokine networks in participants with vagal dysfunction, with stronger and more numerous positive correlations between cytokines. In the vagal dysfunction group, high mobility group box 1 was the only soluble mediator displaying strong negative correlations with other cytokines, especially those cytokines that had numerous other strong positive correlations. CONCLUSION: The current study provides evidence that the vagal component of HIV-associated autonomic neuropathy is associated with changes in immune and gastrointestinal function in individuals with well treated HIV. Further study will be needed to understand whether therapies targeted at enhancing vagal function could be of benefit in HIV.

Time providing care outside visits in a home-based primary care program.

OBJECTIVES: To assess how much time physicians in a large home-based primary care (HBPC) program spend providing care outside of home visits. Unreimbursed time and patient and provider-related factors that may contribute to that time were considered. DESIGN: Mount Sinai Visiting Doctors (MSVD) providers filled out research forms for every interaction involving care provision outside of home visits. Data collected included length of interaction, mode, nature, and with whom the interaction was for 3 weeks. SETTING: MSVD, an academic home-visit program in Manhattan, New York. PARTICIPANTS: All primary care physicians (PCPs) in MSVD (n = 14) agreed to participate. MEASUREMENTS: Time data were analyzed using a comprehensive estimate and conservative estimates to quantify unbillable time. RESULTS: Data on 1,151 interactions for 537 patients were collected. An average 8.2 h/wk was spent providing nonhome visit care for a full-time provider. Using the most conservative estimates, 3.6 h/wk was estimated to be unreimbursed per full-time provider. No significant differences in interaction times were found between patients with and without dementia, new and established patients, and primary-panel and covered patients. CONCLUSION: Home-based primary care providers spend substantial time providing care outside home visits, much of which goes unrecognized in the current reimbursement system. These findings may help guide practice development and creation of new payment systems for HBPC and similar models of care.

Parental caregiving of children prior to hematopoietic stem cell transplant.

Using the Caregiver Reaction Assessment (CRA), we assessed positive reactions and burdens of the caregiving experience among parental caregivers (n = 189) of children scheduled to undergo hematopoietic stem cell transplant. Although widely used in non-parental caregivers, the CRA has not been used in parents of pediatric patients. Reliability (Cronbach's alpha: .72-.81 vs. .63) and concurrent validity (correlation: .41-.61 vs. .28) were higher for negatively framed than positively framed subscales. Results indicate that the caregiving experience is complex. The parents experienced high caregiver's esteem and moderate family support, but also negative impacts on finances and schedule, and to a lesser degree, health. Compared to non-parental caregivers, parental caregivers experienced higher esteem and more impact on finances and schedule.