bluuebunny/crossref_metadata_2025 huggingface dataset:
PATTERNS OF STEROID USE AMONG A REAL-WORLD NATIONAL COHORT OF VETERANS WITH INFLAMMATORY BOWEL DISEASE
Authors: Pham Codey , Xu Anthony , Sansgiry Shubhada , Waljee Akbar , Hou Jason
Published: January 2023

BACKGROUND

Corticosteroids are effective in the acute improvement of symptoms in inflammatory bowel disease (IBD) but are not recommended as maintenance therapy due to lack of long-term efficacy and significant adverse effects. Long term goals for medical management in IBD include achieving steroid-free remission. Biologics such as the anti-tumor necrosis factor alpha Infliximab (IFX) are used to achieve clinical remission, however patterns of continued steroid use among patients on maintenance IFX have not been fully studied. The aim of this study is to evaluate patterns of concomitant steroid use in individuals with IBD on maintenance IFX.

METHODS

We performed a retrospective cohort study using the national Veteran’s Health Administration dataset. Patients with IBD were identified using a previously validated algorithm of ICD9/10 codes and confirmed by manual chart review. Dispensed medications and demographic data were obtained from VA Corporate Data Warehouse. Patients were eligible for inclusion if they had a confirmed diagnosis of IBD and on maintenance IFX. Maintenance IFX- index date was defined as the first dose of IFX in 2017 with receipt of IFX 7 to 9 weeks before and after IFX-index date. The study period for steroid use was six months prior to and following the IFX-index date. Continued steroid use was defined as two or more filled prescription of oral steroids during the study period.

RESULTS

There were 642 individuals included who met the criteria outlined above. The majority (594, 92.5%) were male. The racial breakdown was as follows: 516 (80.3%) White, 85 (13.3%) Black, 18 (2.8%) other races, and 23 (3.6%) with unknown race. A total of 402 individuals (62.6%) had ulcerative colitis, 240 individuals (37.4%) had Crohn’s disease. The average age at the IFX-index date was 46.8 (±15.8) years. The average time from initial date of IFX exposure to the Maintenance IFX-index date was 3.6 years. During the study period, 198 (30.9%) patients filled at least one prescription for steroids. 145 of the 198 (73.2%) individuals prescribed had continued steroid use with two or more filled steroid prescriptions, with an average of 3.9 filled prescriptions of steroids during the study period.

CONCLUSION

While IFX has been shown to be effective in the induction and maintenance of remission in IBD, we observe high rates of continued steroid use in a national cohort of patients with IBD on maintenance IFX. Continued steroid use in patients on IFX maintenance implies inadequate IBD control despite IFX. Further study is required to understand reasons for continued steroid use in order to improve rates of steroid-free remission in IBD.
REAL-WORLD EXPERIENCE WITH TOFACITINIB DOSE DE-ESCALATION IN PATIENTS WITH MODERATE AND SEVERE ULCERATIVE COLITIS
Authors: Yu Amy , Shi Bingyan , Ha Nghiem , Beck Kendall
Published: January 2023

BACKGROUND

Tofacitinib is associated with sustained steroid-free remission and improved quality of life in patients with ulcerative colitis (UC), with the lowest effective dose recommended for maintenance therapy. However, there is limited real-world data to guide decision on optimal maintenance dose. We aimed to evaluate treatment outcomes of tofacitinib dose de-escalation in patients with UC in a real-world cohort.

METHODS

Included were adults with moderate-severe UC treated with tofacitinib between 1/2012-1/2022. Duration of treatment induction with 10 mg twice daily was 8, 16, or >16 weeks. Dose de-escalation was defined as decrease to 5 mg twice daily. Primary outcome was UC flare, defined as UC-related hospitalization/surgery, reinduction with tofacitinib dose increase, corticosteroid, or change of therapy class. Predictors of UC flare were explored using univariable and multivariable Cox regression.

RESULTS

Among 162 patients, 54% were male and 71% were white with a median age of 38 years, with 41% and 51% having moderate and severe UC, respectively. Eighty-three (52%) patients continued induction dose while 79 (48%) underwent dose de-escalation. There was no significant difference in number of prior biologic use or baseline endoscopic Mayo score, however, patients who underwent de-escalation were less likely to be steroid dependent during induction (50% vs 70%,p=0.01). After a median follow-up of 12 months, cumulative incidence rates of UC flare at 12 months were similar in patients with and without dose de-escalation (56% vs 58%,p=0.81), though patients without dose de-escalation had higher rates of UC-related hospitalization (27% vs 14%,p=0.04) and change of therapy class (39% vs 12%,p<0.01) compared to those who de-escalated. Among patients with dose de-escalation, cumulative rates of UC flare at 12 months were higher in patients with ongoing severe disease (Mayo 3) at 6 months of tofacitinib (Figure 1). In univariable Cox regression, prolonged duration of induction course with 10 mg twice daily >16 weeks was protective of UC flare (HR 0.37,95% CI 0.16-0.85) while ongoing severe disease (Mayo 3) was associated with UC flare (HR 6.41,95% CI 2.23-18.44), which remained significant after adjusting for age, sex, duration of induction course, and use of corticosteroid at dose de-escalation (HR 6.05, CI 2.00-18.35) (Table 1). Twenty-seven (29%) patients with UC flare had dose re-escalated to 10 mg twice daily with 63% recapturing clinical response at 12 months.

CONCLUSIONS

In this real-world cohort of UC patients with tofacitinib de-escalation, we observed a 56% cumulative incidence of UC flare at 12 months. Observed factors associated with UC flare after dose de-escalation included shorter induction course <16 weeks and active disease at 6 months of tofacitinib. The majority were able to recapture clinical response after dose re-escalation.
USE OF UPADACITINIB IN 11 TOFACITINIB-REFRACTORY ULCERATIVE COLITIS PATIENTS AT A SINGLE TERTIARY CARE CENTER
Authors: Levine Jake , McKibbin Jey , Ham Rebecca , Higgins Peter , Bishu Shrinivas , Berinstein Jeffrey
Published: January 2023

INTRODUCTION

Ulcerative colitis (UC) is a chronic inflammatory condition characterized by diarrhea, abdominal pain, rectal bleeding, and weight loss. Upadacitinib is an oral, selective, small molecule Janus Kinase (JAK) inhibitor that was recently approved in the United States for moderate to severe UC. Clinical trials evaluating the efficacy of upadacitinib excluded patients with a previous exposure to tofacitinib, a nonselective JAK inhibitor; therefore, the efficacy of upadacitinib in patients with previous exposure to tofacitinib remains largely unknown.

METHODS

We present a small retrospective case series of all patients with a diagnosis of ulcerative colitis seen at our institution between with a prior exposure to tofacitinib who were initiated on upadacitinib between May and August of 2022. Demographic data was collected as well as outcome data on clinical improvement, steroid-free remission, biochemical improvement, colectomy status, and adverse events.

RESULTS

Eleven tofacitinib-refractory patients with ulcerative colitis were initiated on upadacitinib. Mean age was 38.1 years, five (45.5%) patients were female, nine (81.8%) patients were white, seven (63.6%) patients had pancolitis, and mean duration of UC was 7.4 years (Table 1). In this group, there were high rates of prior targeted therapy failures. These patients were followed for a mean of 121 days. The clinical course of each patient is presented in Table 2. Of the 11 patients included in our study, nine (81.8%) patients reported symptomatic improvement, six (54.5%) patients were able to successfully taper corticosteroids, and two (18.2%) patients underwent colectomy, one of which was elective and planned prior to initiating upadacitinib. The mean fecal calprotectin improvement was 1430mg/kg of patients with both baseline and follow-up testing. Three (27.3%) patients experienced an adverse event; two (18.2%) patients with mild COVID-19 not requiring hospitalization and one (9.1%) patient with Enteropathogenic E. Coli.

DISCUSSION

This real-world single-center case series of 11 patients, suggests that upadacitinib may be an effective option for patients with a previous tofacitinib exposure. Larger prospective studies are needed to confirm these findings.
VEDOLIZUMAB, USTEKINUMAB AND TOFACITINIB AS TRIPLE THERAPY FOR ULCERATIVE COLITIS
Authors: Thurston Theresa , Moskow Joshua , Glassner Kerri , Abraham Bincy
Published: January 2023

BACKGROUND

Therapies for ulcerative colitis include mesalamine, immunomodulators, biologics, and small molecules. Unfortunately, patient response is not universal, and efficacy can diminish with time, postulated to be from increased drug clearance, anti-drug antibodies with biologics, and immune mediated pathogenesis changes. Biologic combinations have been investigated for producing synergistic drug effects and extending targeted therapy in patients lacking monotherapy response, with promise shown in two drug combinations (1), but not investigated using three.

CASE

A 20-year-old Caucasian male with UC presented in August 2015 following 1 month hospitalization for Clostridium difficile infection. He had 2 infusions of infliximab 10 mg/kg continued post-discharge, and started mesalamine 4.8gm qd, 6-mercaptopurpine (6MP) 100mg qd, and prednisone taper. By November 2015, colonoscopy showed severe Mayo 3 pancolitis. Due to insufficient response 6MP and infliximab were discontinued and he started vedolizumab. August 2016 colonoscopy had chronic colitis with Mayo 2 inflammation of the ascending, transverse, descending and rectosigmoid colon so prednisone 40mg was initiated and vedolizumab increased to vedolizumab q4 weeks. He responded well clinically and was tapered off prednisone by October 2016. November 2016 colonoscopy had right sided colitis resolution with residual proctosigmoiditis (Mayo 2); May 2017 colonoscopy still had rectosigmoid inflammation (Mayo 2) with chronic active colitis, so ustekinumab q8 weeks was added. December 2017 colonoscopy was unimproved so ustekinumab increased to q4 weeks, prednisone was increased, and he requested addition of budesonide and mesalamine. With clinical improvement, prednisone was tapered by February 2020.

However, December 2020 colonoscopy showed severe (Mayo 3) recto-sigmoiditis with mild colitis in the descending to transverse colon, so tofacitinib XR 22 mg qd was added. He improved clinically, so budesonide was discontinued in February 2021. November 2021 colonoscopy showed complete endoscopic remission (Mayo 0) so he initiated de-escalation with initially discontinuing mesalamine and increasing ustekinumab initially to q8 week intervals and later vedolizumab to q8 weeks with maintenance of clinical remission. Given marginal effect, ustekinumab was discontinued initially and later, tofacitinib was discontinued. He remains in remission on vedolizumab q8 weeks monotherapy.

CONCLUSION

Combination therapies may be considered for suitable patients experiencing severe, refractory disease. Although patients with multiple comorbidities, frailty, immunosuppression or certain contraindications may not be well suited, this patient presents as an ideal candidate with no comorbidities and few other therapeutic options.

REFERENCES

(1) Privitera G et al. Combination therapy in IBD. Autoimmunity Reviews. 2021 Jun 1;20(6):102832.
EFFICACY OF UPADACITINIB IN PATIENTS PREVIOUSLY TREATED WITH TOFACITINIB FOR THE MANAGEMENT OF ULCERATIVE COLITIS
Authors: Radcliffe Marlana , Long Millie , Barnes Edward , Herfarth Hans , Hansen Jonathan , Jain Animesh
Published: January 2023

BACKGROUND

Tofactinib is a JAK inhibitor that targets mainly JAK 1 and JAK3 approved to treat Ulcerative Colitis (UC) in 2018. The JAK inhibitor Upadacitinib (upa) was recently approved to treat UC in March 2022 and has increased selectivity for JAK1. The relative efficacy and safety of these two JAK inhibitors is not presently clear. An important clinical question is whether patients who have not responded or lost response to tofacitinib will have a reasonable likelihood of response with upadacitinib.

AIM

To determine whether patients previously exposed to tofacitinib would benefit from treatment with upa.

METHODS

We identified adult patients at our center with active UC who had previously been treated with tofacitinib who were started on upa in the spring of 2022. Pre- and post- upa characteristics were recorded including demographic information, prior treatments, hemoglobin (hgb), albumin (alb), C-reactive protein (CRP), and partial Mayo score (pMS). Primary end points evaluated were clinical response (decrease in pMS >2), and clinical remission (pMS < 2). Secondary endpoints included serious adverse events, steroid use at time of follow up, and normalization of CRP, hgb and alb. IRB approval was obtained for the study.

RESULTS

A total of 3 patients were identified. All patients were given upa 45 mg daily for 8 weeks followed by 30 mg daily for maintenance. Median follow up time was 10 weeks (range 10-11 weeks). All three patients achieved the primary endpoints of clinical response and remission with pMS values of 0 at time of follow up. Patients 1 and 2 were concurrently started on a prednisone taper when initiating upa and were no longer on prednisone at time of follow up. Patients 1 and 2 had normalization of their CRP values, patient 3 only had a pre-upa CRP value available and that was 0. See table 1 for data on hgb and alb levels. Patient 1 had a pre-upa endoscopic mayo score of 3, while patients 2 and 3 had pre-upa endoscopic mayo scores of 2. No patient had post-upa endoscopic evaluation at time of follow up. No patient had any serious adverse events.

CONCLUSIONS

In this small case-series, use of upadacitinib in patients previously treated with tofacitinib was safe and effective in achieving clinical remission.
Histologic Predictors of Clinical Outcomes and Healthcare Utilization in Patients With Ileal Pouch-Anal Anastomosis
Authors: Chang Shannon , Hong Simon , Hudesman David , Remzi Feza , Sun Katherine , Cao Wenqing , Kani H Tarik , Axelrad Jordan , Sarkar Suparna A
Published: January 2023

Background

The prognostic significance of histology in ileal pouch-anal anastomosis (IPAA) remains unclear. The aim of this study was to evaluate if histologic variables are predictive of IPAA clinical outcomes and healthcare utilization.

Methods

This was a retrospective cohort study of patients with IPAA undergoing surveillance pouchoscopy at a tertiary care institution. Pouch body biopsies were reviewed by gastrointestinal pathologists, who were blinded to clinical outcomes, for histologic features of acute or chronic inflammation. Charts were reviewed for clinical outcomes including development of acute pouchitis, chronic pouchitis, biologic or small molecule initiation, hospitalizations, and surgery. Predictors of outcomes were analyzed using univariable and multivariable logistic and Cox regression.

Results

A total of 167 patients undergoing surveillance pouchoscopy were included. Polymorphonuclear leukocytes (odds ratio [OR], 1.67), ulceration and erosion (OR, 2.44), chronic inflammation (OR, 1.97), and crypt distortion (OR, 1.89) were associated with future biologic or small molecule initiation for chronic pouchitis. Loss of goblet cells was associated with development of chronic pouchitis (OR, 4.65). Pyloric gland metaplasia was associated with hospitalizations (OR, 5.24). No histologic variables were predictive of development of acute pouchitis or surgery. In an exploratory subgroup analysis of new IPAA (<1 year), loss of goblet cells was associated with acute pouchitis (OR, 14.86) and chronic pouchitis (OR, 12.56). Pyloric gland metaplasia was again associated with hospitalizations (OR, 13.99).

Conclusions

Histologic findings may be predictive of IPAA outcomes. Pathologists should incorporate key histologic variables into pouchoscopy pathology reports. Clinicians may need to more closely monitor IPAA patients with significant histologic findings.
Association of Culturable-Virus Detection and Household Transmission of SARS-CoV-2, California and Tennessee, 2020–2022
Authors: Deyoe Jessica E , Kelly J Daniel , Grijalva Carlos G , Bonenfant Gaston , Lu Scott , Anglin Khamal , Garcia-Knight Miguel , Pineda-Ramirez Jesus , Hagen Melissa Briggs , Saydah Sharon , Abedi Glen R , Goldberg Sarah A , Tassetto Michel , Zhang Amethyst , Donohue Kevin C , Davidson Michelle C , Sanchez Ruth Diaz , Djomaleu Manuella , Mathur Sujata , Shak Joshua R , Deeks Steven G , Peluso Michael J , Chiu Charles Y , Zhu Yuwei , Halasa Natasha B , Chappell James D , Mellis Alexandra , Reed Carrie , Andino Raul , Martin Jeffrey N , Zhou Bin , Talbot H Keipp , Midgley Claire M , Rolfes Melissa A
Published: January 2023

From 2 severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) household transmission studies (enrolling April 2020 to January 2022) with rapid enrollment and specimen collection for 14 days, 61% (43/70) of primary cases had culturable virus detected ≥6 days post-onset. Risk of secondary infection among household contacts tended to be greater when primary cases had culturable virus detected after onset. Regardless of duration of culturable virus, most secondary infections (70%, 28/40) had serial intervals <6 days, suggesting early transmission. These data examine viral culture as a proxy for infectiousness, reaffirm the need for rapid control measures after infection, and highlight the potential for prolonged infectiousness (≥6 days) in many individuals.
Introduction
Authors: Goforth Anisa N. , Pham Andy V.
Published: January 2023

This chapter provides an introduction to the purpose and outline of this volume. The authors focus on the foundations of culturally responsive practice, culturally responsive assessment, and promoting resilience through counseling, interventions, and evaluation of programs. Culturally responsive practice and engaging in cultural humility are the foundation of this book, and the authors share their process of critical reflexivity in writing it. Further, a rationale is provided for using certain terms and language throughout the book. This book is a much-needed resource for a broad range of practitioners in schools and can be useful for general educators, special educators, and administrators who are interested in understanding how to provide culturally responsive services to culturally and linguistically diverse students.
Evaluating School-Based Programs for Diverse Students
Authors: Goforth Anisa N. , Pham Andy V.
Published: January 2023

Culturally responsive evaluation (CRE) is essential for identifying whether a program works in its specific context and integrates community members, parents, and school personnel throughout the process. It is a decision-making process that involves both critical reflexivity and collaboration to assess the strengths and needs of students. CRE uses a strengths-based approach to promote social justice and shifts the conversation from problems to opportunities for meaningful growth. This chapter reviews the six steps within the school-based culturally responsive program evaluation model. It wraps up with a discussion of the ethical considerations in program evaluation with culturally and linguistically diverse communities.
Sessions 6 and 7: Defusion from Your Inner Experiences: You Are Not Your Urges to Pull
Authors: Woods Douglas W. , Twohig Michael P.
Published: January 2023

This chapter discusses that the urges, thoughts, and emotions around hair pulling do not necessarily need to be treated literally. Accepting urges and inner experiences involves learning to defuse from these feelings to what they really are. This ability to defuse from inner experiences allows thoughts to separate from the person. Defusion exercises are provided to help the patient see that thoughts, urges, and emotions do not need to influence action. “Being present” exercises are presented to help patients become more aware of their thinking process.
Introduction: Introductory Information for Therapists and Assessment
Authors: Lee Eric B.
Published: January 2023

This chapter provides background on trichotillomania (TTM), a disorder of secrecy and shame. Many with the problem do not know it has a name, and many who know what they have cannot find knowledgeable providers. Research on the etiology, maintenance, and treatment of TTM has grown dramatically since the program was first published. This chapter introduces Acceptance and Commitment Therapy (ACT) Enhanced Behavior Therapy for Trichotillomania (AEBT-T) as a treatment for adolescents and adults. The treatment blends the traditional behavior therapy elements of habit reversal training and trigger reduction strategies with the more contemporary behavioral elements of ACT. AEBT-T teaches clients to effectively manage their pulling and to actively increase their functioning.
Session 8: Practicing Acceptance and Commitment Therapy (ACT)
Authors: Woods Douglas W. , Twohig Michael P.
Published: January 2023

This chapter describes the eighth session of the Acceptance and Commitment Therapy (ACT) Enhanced Behavior Therapy for Trichotillomania (AEBT-T) treatment package. It emphasizes how the client should be aware that urges to pull and other inner experiences surrounding pulling are incredibly difficult to control. Learning to see urges for what they are and make room for the presence of these experiences, rather than trying to control them, might be a more functional way to address them. The chapter suggests procedures from exposure therapy, which can be done in a context where the client is encouraged to “make friends” with the urge to pull. Avoidance can generally be detected when a client refuses or avoids a feeling, thought, or inner experience; it can occur in an exercise when a client is unwilling to do a part of it or suggests doing something easier.
Session 9: Practicing Acceptance and Commitment Therapy (ACT) and Review of Treatment
Authors: Woods Douglas W. , Twohig Michael P.
Published: January 2023

This chapter describes the ninth session of the Acceptance and Commitment Therapy (ACT) Enhanced Behavior Therapy for Trichotillomania (AEBT-T) treatment package. It includes exercises to help clients create a new relationship with pulling-related inner experiences. It also illustrates how to move from a situation where pulling-related inner experiences are events that push the client to engage in actions that regulate experiences, to a situation where these inner experiences are just inner experiences the client notices and does not interact with. In one exercise, the client practices having the particular inner experience with which they most commonly struggle. It determines which processes of change the client should focus on while engaged in a behavioral exercise.
Modifications for Working with Adolescents
Authors: Petersen Julie M.
Published: January 2023

This chapter focuses on the implementation of Acceptance and Commitment Therapy (ACT) Enhanced Behavior Therapy for Trichotillomania (AEBT-T) in adolescent clients. It includes session-by-session alterations and suggestions for implementing AEBT-T with adolescents. The client’s developmental level and insight into trichotillomania are likely the best guides for determining where and how to modify the protocol. Adolescents might not have struggled against their pulling as long as most adults have and thus may have lower motivation to change and may not be as aware of their struggle with urges to pull. The chapter highlights new elements of treatment for adolescents, including the need to work on motivation issues with reinforcement programs.
Case 14
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 40-year-old woman in her first pregnancy with no past medical history presented at 35 weeks of gestation with a 3-day history of a sore throat. She had not been able to eat or drink anything for 24 hours and had also intermittently vomited. She did not report diarrhoea and no other family members were unwell. She had been entirely well until this point in her pregnancy, with normal blood pressure and BMI at booking. She was not on any medications. She was a non-smoker and did not drink alcohol. On examination she was unwell and dehydrated with a heart rate of 100 bpm and respiratory rate 40 breaths/min. She had 4+ ketones in her urine.
Case 26
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 36-year-old woman in her second pregnancy presented at 25 weeks of gestation with shortness of breath and lethargy. She also reported headache, visual disturbances, and feeling dizzy. Her pregnancy had been complicated by protracted nausea and vomiting beyond the first trimester, severely limiting her oral intake. Anaemia had been identified on her booking bloods and she had been treated with oral iron. Her first pregnancy had also been complicated by nausea and vomiting throughout pregnancy, and she had an uncomplicated vaginal birth at term. On examination she was pale, her heart rate and blood pressure were normal and she had 3+ protein on urine dipstick.
Case 28
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 41-year-old woman was seen in the maternal medicine clinic at 20 weeks of gestation. She was being reviewed regularly due to a background history of Crohn’s disease for which she took azathioprine. Ten years prior to pregnancy she had had small bowel obstruction with subsequent laparotomy and ileal resection. Her last flare was 18 months ago, and she had previously had a perianal fistula, but this had healed. At this appointment she described feeling generally unwell, with extreme fatigue, loss of appetite, and had lost 8 kg of weight unintentionally in the preceding few weeks. She described intermittent diarrhoea and constipation, intermittent abdominal pain but no blood or mucus in the stool and no vomiting.
Case 31
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 33-year-old woman attended for pre-pregnancy counselling. She had a history of end-stage renal failure, having presented at the age of 18 with severe hypertension. She had been found to have bilateral small kidneys on ultrasound and a biopsy had not been performed. She was started on peritoneal dialysis via Tenckhoff catheter at the age of 21 and had a non-related donor transplant at the age of 26. She had remained very well since the transplant with no episodes of rejection. Her maintenance treatment was tacrolimus and azathioprine. She remained normotensive and had no proteinuria. She was planning a cycle of in vitro fertilization because of a history of polycystic ovarian syndrome and anovulation. Previous ovulation induction with letrozole had not been successful.
Case 32
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 29-year-old woman presented at 11 weeks of gestation with a lump in her right breast, which she had first noticed when having a shower a week prior to presentation. There were no associated skin changes, pain, nipple discharge, or other lumps. She had never had anything similar before. Her first pregnancy 3 years previously had been uncomplicated, and she had a vaginal birth after the spontaneous onset of labour at term. She had no past medical history. She was taking pregnancy vitamins and had no known allergies. There was a family history of breast carcinoma in her sister and maternal aunt. She had never smoked and did not drink alcohol.
Case 33
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 20-year-old woman in her first pregnancy presented at 29 weeks of gestation with repeated generalized tonic-clonic seizures. She had been unwell in the preceding 24 hours with vomiting and significantly reduced oral intake. In childhood she had been diagnosed with juvenile myoclonic epilepsy, for which she had been on 75 mg lamotrigine twice daily prior to pregnancy. This dose had not been increased during pregnancy. Prior to this she had had no seizures for over a year. She had no other past medical history and was not taking any other medications. There was no family history of significant illnesses. She had never smoked.
Case 36
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 43-year-old woman presented to the Emergency Department at 37 weeks of gestation with central chest and epigastric pain as well as shortness of breath on exertion. She had had similar symptoms intermittently from 20 weeks. She had seen her GP and started antacid therapy. On the day of presentation, the pain and breathlessness had started when she had climbed some stairs but had persisted for an hour when she stopped. She had taken some antacid liquid, but this had not improved her symptoms. At its worse, the pain was 8/10 in severity. She felt nauseated and had vomited once. She felt sweaty and unwell.
Case 37
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 29-year-old woman in her first pregnancy presented in early labour at 38 weeks of gestation. Her pregnancy had been complicated by nausea and vomiting in the first trimester and heartburn later in pregnancy. She had been well and continued to work as a primary school teacher until the preceding week. Initial observations were normal, and she was admitted to the labour ward. She was progressing well, but then started to feel unwell and mentioned this to her midwife. She then started to have a rigor, but her temperature remained normal.
Case 39
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 23-year-old woman in her first pregnancy presented at 32 weeks of gestation with severe chest pain, shortness of breath, and bilateral lower limb pain. She was known to have sickle cell disease (HbSS), and prior to pregnancy she had had several admissions with vaso-occlusive crises, including two episodes of chest crisis requiring intensive care support. Whilst regular exchange transfusions had been planned in pregnancy, she had not attended for these since 20 weeks of gestation. Her last vaso-occlusive crisis was 5 weeks prior to this presentation, and she had managed this at home with analgesia. She was prescribed regular aspirin, phenoxymethylpenicillin, and folic acid, however she did not take all of these every day. There was a family history of sickle cell disease. She did not smoke.
Case 40
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 35-year-old woman presented to the Maternity Assessment Unit at 34 weeks of gestation with a 12-hour history of reduced fetal movements, on a background of three days of right upper quadrant and epigastric pain, and then vomiting. Her pregnancy had been otherwise uncomplicated with a normal blood pressure at booking (110/65 mmHg). She had a family history of pre-eclampsia. The midwife was unable to auscultate the fetal heart on initial assessment. On examination she was unwell, tachycardic (118 beats per min) and hypertensive (150/90 mmHg). Urine dipstick showed 4+ protein and 2+ blood.
Case 41
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 28-year-old woman presented to the Emergency Department with a 1-day history of vomiting blood, following 10 days of profuse vomiting. She reported vomiting a large spoonful of bright red blood on 2 occasions over the last day. The first time was at the end of a bout of vomiting and the blood mixed with vomitus. The second time was before any further vomiting, and she described fresh, bright red blood. She reported vomiting more than 6 times each day, retching many times each day, and feeling nauseated for most of the day. She found it increasingly hard to eat and vomited after eating and drinking fluids. She had also experienced some epigastric tenderness for 2 days. She had not opened her bowels for 2 days but prior to that reported normal stool.
Case 43
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 36-year-old woman in her first pregnancy presented to hospital in spontaneous labour at 38 weeks of gestation. She had no past medical history and had taken only simple analgesia prior to labour. Her booking BMI was 38 kg/m2. An oxytocin infusion was started for failure to progress, and she had an epidural. Antibiotics were administered as she had previously had a urine sample that showed group B streptococcus. In the moments before birth, she had complained of chest pain and breathlessness and had become increasingly agitated and incoherent. A forceps delivery was performed for fetal bradycardia. Shortly after the birth she became unresponsive with no cardiac output. Cardiac arrest was confirmed, and cardiopulmonary resuscitation was commenced.
Case 54
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 37-year-old woman presents to the maternity assessment unit at 34 weeks of gestation with a 4-day history of vomiting, dizziness, and fatigue. She had been found to have SARS-CoV2 infection 9 days previously, when she had developed a dry cough, myalgia, and intermittent high fevers. The fevers and cough had stopped 6 days ago, but she had continued to feel unwell. She then developed vomiting, fatigue, and dizziness, which had progressively worsened. She did not have any abdominal pain or diarrhoea, had no shortness of breath, cough or coryza, and had no urinary symptoms. She had a history of sarcoidosis for which she was taking prednisolone regularly.
Case 55
Authors: Frise Charlotte , Bhalsod Krupa , Scott Rebecca , Gibson Harry
Published: January 2023

A 28-year-old woman with no past medical history was pregnant for the first time. She booked with her midwife at 9 weeks of gestation. Her blood pressure and BMI were normal, and she was scheduled for low-risk midwifery-led care. She has been taking pregnancy vitamins for more than 3 months prior to conception. Her booking bloods, however, were significantly abnormal and she was referred for further review in clinic.
Difficult Personality Traits and Disorders in Palliative Care
Authors: Wynn John
Published: January 2023

This chapter focuses on how clinicians can assess, understand, and care for patients with difficult personality traits and personality disorders. A minority of terminally ill patients respond to crisis with self-defeating, alienating strategies that confuse and trouble clinicians. Staff may find them aggravating, aggrandizing, chaotic, dramatic, or odd. Their dysfunctional responses may foil treatment or monopolize resources. Staff may feel anger, disinterest, neglect, guilt, even hatred toward these patients or family members. Despite attempts to cope with such strong and “unprofessional” feelings, clinicians may label the patient as uncooperative, bizarre, dramatic, demanding, or simply “impossible.” Blaming or dismissing such patients may ensue, with adverse consequences for all involved. Labeling or blaming is of little help. This chapter provides insight and practical information for working with these puzzling patients. DSM diagnostic categories and the hazards of diagnostic labeling are explained. A clinical system is presented to identify patients’ coping strategies. Staff responses are seen as typical, understandable, and modifiable with consultative input. Realistic responses—to help patients, families and staff weather the cancer experience—are explained. The roles of palliative care clinicians as well as psychiatric consultants are considered, including necessary jargon but focusing on practical understanding and tools.
Screening for Psychological Distress in the Palliative Care Setting
Authors: Gascon Bryan , Rodin Gary , Zimmermann Camilla , Li Madeline
Published: January 2023

Screening for distress, the sixth vital sign, has gained international momentum in the past decade. It is increasingly being established as an accreditation requirement by medical regulatory bodies. It plays an important role in palliative care populations, where psychological distress may often be missed. The management of psychological distress is facilitated by routine screening for emotional distress, mood and trauma symptoms, and existential distress using patient-reported outcome measures (PROMs) validated in these populations. This chapter describes successful strategies for distress screening implementation in the palliative care setting. The authors also provide an overview of the psychometrics of screening tools and guidance on brief PROMs that can be used to screen for psychological distress in palliative care. Future work in this area is needed to validate screening tools in the palliative care setting, expand the evidence base for effective distress screening practices in this population, and demonstrate its effect on health outcome of patients and their families.
Building Interdisciplinary Teams of Excellence
Authors: Salman Jaroslava , Kotwal Juee , Loscalzo Matthew
Published: January 2023

Interdisciplinary teams are now considered a standard of care in the field of supportive and palliative medicine. Forming a successful team requires careful consideration of patients’ and families’ needs, institutional resources, and expectations for effective teamwork. Assembling a team of experts in no way guarantees creating a successful team. Close attention must be paid to the recruitment of the right staff as well as to intra-team dynamics and functioning. The staff leadership model is one such strategy to enhance effective interdisciplinary teamwork, emphasizing personal accountability and compassion directed not only to patients and families but also to colleagues. Only a well-functioning team can provide the right environment for educational, professional, and personal development of its team members while maintaining its commitment to its mission and values of excellent clinical care.
Psychosocial Benefits of Early Palliative Care Intervention
Authors: Wu Carrie C. , Temel Jennifer , Pirl William
Published: January 2023

There is increasing recognition that palliative care interventions should be offered concurrent to cancer diagnosis and treatment. The model of service delivery has evolved throughout the years, from a primarily inpatient and crisis-driven service model to a model that encompasses both inpatient and ambulatory settings. This shift has allowed for the progression and development of early integrated palliative and oncology care. Studies using a variety of palliative care interventions, from traditional provider-based referrals to educational and case-management interventions, have shown clinically significant benefits for patients. Patients receiving early palliative care services demonstrate a more proactive approach-oriented coping style, report reduced rates of depression, report better quality of life, and use less aggressive treatments at the end of life, without detriment to survival. Although psychiatry has not been formally included in early palliative care trials, collaborative efforts with psychiatrists may offer creative ways of addressing psychosocial issues at the onset of cancer diagnosis.
Cultural Diversity and Palliative Care
Authors: Pelleg Ayla , Smith Cardinale B. , Blackhall Leslie
Published: January 2023

Palliative care is standard of care for all patients with serious illness, including culturally diverse patients who often experience racial and ethnic health disparities. Healthcare disparities lead to patients receiving care at more advanced stages of illnesses, getting more fragmented care, and often resulting in increased morbidity and mortality. This chapter focuses on cultural diversity in regard to patient values, access to care, and receipt of care, and it discusses next steps in how to mitigate cultural differences to provide equitable care to all patients. Though cultural diversity can be defined in many ways and is often self-determined, this chapter focuses on health inequalities within the United States and for Black and Hispanic minority patients, and it touches on health disparities among Asian minority patients.
Palliative Aesthetics
Authors: Miller B. J. , Glaser Johanna , Burke Justin
Published: January 2023

This chapter serves as an introduction to palliative aesthetics, a long unnamed therapeutic approach in serious illness care that draws on philosophy, medical history, current medical practices, the arts, and design. Aesthetics is the branch of philosophy traditionally associated with the nature of art and beauty, but these elements do not exhaust its full scope. Here the authors disengage the concept of the aesthetic from its domination by cosmetic pleasantry, thereby opening it up and simultaneously returning to its foundation in sensation, perception, and experience more broadly and deeply. Thus conceived, the authors present palliative aesthetics as the application of philosophical aesthetics to the aims, practices, and therapeutic modalities of hospice and palliative medicine. The chapter begins by introducing the philosophy of aesthetics and providing an inventory of its application in historical medical practice, meaning-based therapy, dignity therapy, and integrative medicine. The concept of aesthetic knowing, the grounding of truth in the body, and aesthetics’ therapeutic potentials are discussed, with an emphasis on its self-sufficient, experiential, accessible, and immediate nature, along with its capacity to establish connection, provide a sense of wholeness, and safely render narratives of meaning unnecessary. The authors offer palliative aesthetics as a tool to address various forms of suffering in serious illness, especially in the face of existential distress and experiences of meaninglessness. Aesthetics has the capacity not only to diminish suffering but to actively augment aliveness, thereby expanding the impact of palliative medicine and making good on its promise to realize quality of life.
Narrative Medicine
Authors: Steinhauser Karen E. , Winger Joseph G.
Published: January 2023

Stories allow us to exchange contexts, causes, and consequences of illness and suffering as well as sources and paths of healing. In palliative care, stories hold data informing an understanding of whole-person pain. The capacity to elicit a patient’s narrative—including illness understanding, history, hopes, and fears—is a central competency in the service of facilitating medical decision-making, informing a plan of care, and, in short, reducing suffering and increasing quality of life. In this chapter, the authors discuss the tradition of narrative medicine and its specific relationship to palliative care as both a clinical competency and an intervention for impacting patient, family caregiver, and provider well-being. They make recommendations for future work in the field including the importance of identifying a standard definition of what constitutes narrative methods, conceptual frameworks linking narrative methods with outcomes, and core validated outcomes that can be part of the conceptual framework and future studies. Furthermore, the field would be improved by the addition of rigorously conducted trials of patient- and caregiver-focused narrative medicine interventions in palliative care populations representing a variety of illness types and stages and narrative interventions in populations of clinicians to test its efficacy as a means of mitigating burnout and deepening professional meaning. Finally, the field would benefit from training and evaluation of narrative competencies for palliative care clinicians.
Special Care Considerations for the Seriously Ill Older Adult
Authors: Pelleg Ayla , Morrison R. Sean , Meier Diane E.
Published: January 2023

Almost all current and future medical providers will take care of older adults in their careers, thus knowing how to approach this patient population is essential. The current, fragmented US healthcare system often does not meet the needs of older adults with serious illnesses, which results in frustrating and confusing experiences for patients; high costs for society, patients, and families: and harms from under- and overdiagnosis and treatment. Although geriatrics and palliative medicine are specialties designed to improve the experience and outcomes of care for older persons, access to these services is inadequate and variable. This chapter focuses on optimizing healthcare during serious illness for adults 65 years old or older within the United States with a review of the influence of the physiology and biology of aging on treatment, the implications of aging demographics on healthcare systems, common geriatrics syndromes and their interaction with coexisting serious medical illness, and the range of evidence-based models shown to improve experience and outcomes of care during serious and complex illness. This chapter also discusses the rapidly spreading “4M’s” framework (focusing on Mobility, Mentation, Medications, and what Matters) for organizing care delivery for older people.
The problems of pain in Western society
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter examines the different kinds of problems that pain has posed over the past millennium. Until about 1500, pain was primarily understood as a religious problem. Pain and suffering challenged the truth of religious belief and the legitimacy of the Church. All pain and suffering happened for a reason. As our society became more secular over the next 300 years, pain came to be understood primarily as a social problem. Our modernizing society aimed to create the best environment for human flourishing by reducing the pain and suffering of everyone to the minimum possible. At least since 1900, we have separated pain as a medical problem from the remainder of human suffering. Now pain has causes rather than reasons. We have aimed to reduce this problem to a minimum through medical treatment. This quest has led us to our opioid epidemic.
The medical dream of conquering pain
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter tells the story of pain shifting from being inevitable and essential suffering to becoming inessential suffering that did not need to be borne. The story begins with the birth of anesthesia, hailed as the conquering of pain. That event alone opened up many possibilities beyond opioids and alcohol for controlling pain, and changed the minds of many who saw pain as something that morally must be endured. The story continues with the pioneers of pain medicine, the narrowing of the goal of pain relief into simple intensity reduction, and the commandeering of the vision of pain medicine’s pioneers into a huge commercial venture that misunderstood the limitations of pain intensity reduction if divorced from the wider suffering caused by pain.
Chronic pain as a disease
Authors: Sullivan Mark D. , Ballantyne Jane C.
Published: January 2023

This chapter argues that changes in our values about pain and opioids were much more important than increases in the prevalence of chronic pain in creating the opioid epidemic. Central to these changes was the argument that chronic pain is not just a symptom of disease, but also a disease itself that deserves its own treatment. Pain intensity measurement was used to determine the need for pain treatment and the success of that treatment. This assessment strategy was joined with the titrate-to-effect treatment strategy first utilized in cancer pain treatment that declared that the proper opioid dose is the dose that significantly reduces the pain intensity score. The pain-as-disease model is intended to increase the scientific and clinical legitimacy of chronic pain, but it tends to exclude the patient from the process of treatment and recovery and may produce iatrogenic harm.