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BACKGROUND: Although people living with CF (PLwCF) commonly report pain and other symptoms, little is known regarding their experiences of living with and accessing treatment for burdensome symptoms. METHODS: PLwCF completed online questionnaires assessing symptom prevalence and distress and were also asked about experiences accessing pain and symptom treatment, using both closed-ended and free-text entries. RESULTS: Pain was the most prevalent symptom experienced among the 55 participants (76%) and the symptom that most commonly caused distress (64%). PLwCF not on CFTR modulator therapy were likelier to endorse pain as distressing (p = 0.007). Respondents expressed that their pain was commonly underrecognized and undermanaged, they desired a multi-modal approach to treatment, and noted concerns about disease progression affecting their symptom management options. CONCLUSIONS: Our study suggests that PLwCF often have unmet symptom management needs that may impair quality of life.
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Fibrosis Quística , Humanos , Adulto , Fibrosis Quística/complicaciones , Fibrosis Quística/epidemiología , Fibrosis Quística/terapia , Calidad de Vida , Prevalencia , Cuidados Paliativos , Dolor/diagnóstico , Dolor/epidemiología , Dolor/etiologíaRESUMEN
People living with cystic fibrosis (PLwCF) experience high symptom burden. 146 clinicians completed online surveys regarding barriers and solutions to symptom management between September and October 2020. The surveys contained both closed-ended and free-text entries. The symptom management specialists that CF clinicians most wished to consult included mental health (88, 65%), palliative care (59, 41%), and pain specialists (48, 33%). Barriers to symptom management included concerns about controlled substances prescribed for symptom control causing addiction and precluding transplantation, a lack of trust and collaboration among clinical specialties, a lack of symptom management specialists with CF expertise, and a worry about the affordability of specialist-level symptom management care. Potential solutions included non-pharmacological approaches, expanding access to affordable specialist symptom management care, the creation of clinical care guidelines for symptom management in CF, and having CF clinicians and symptom management specialists work alongside each other in CF clinic to build interdisciplinary trust and education.
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Fibrosis Quística , Cuidados Paliativos , Humanos , Fibrosis Quística/diagnóstico , Fibrosis Quística/terapia , Salud Mental , Encuestas y Cuestionarios , Costos y Análisis de CostoRESUMEN
INTRODUCTION: Cystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional symptom burdens, disruptions to social roles and complex treatment decision making. While palliative care (PC) interventions have been shown to relieve many such burdens in other serious illnesses, no rigorous evidence exists for palliative care in CF. Thus, this study aims to compare the effect of specialist palliative care plus usual CF care vs usual CF care alone on patient quality of life. METHODS AND ANALYSIS: This is a five-site, two-arm, partially masked, randomised superiority clinical trial. 264 adults with CF will be randomly assigned to usual CF care or usual CF care plus a longitudinal palliative care intervention delivered by a palliative care specialist. The trial's primary outcome is patient quality of life (measured with the Functional Assessment of Chronic Illness Therapy-Palliative care instrument). Secondary outcomes include symptom burden, satisfaction with care and healthcare utilisation. Outcomes will be measured at 12 months (primary endpoint) and 15 months (secondary endpoint). In addition, we will conduct qualitative interviews with patient participants, caregivers, and palliative care and CF care team members to explore perceptions of the intervention's impact and barriers and facilitators to dissemination. ETHICS AND DISSEMINATION: Human subjects research ethics approval was obtained from all participating sites, and all study participants gave informed consent. We will publish the results of this trial in a peer-reviewed journal. TRIAL REGISTRATION NUMBER: ISRCTN53323164.
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Fibrosis Quística , Cuidados Paliativos , Adulto , Cuidadores/psicología , Fibrosis Quística/terapia , Humanos , Estudios Multicéntricos como Asunto , Cuidados Paliativos/métodos , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
INTRODUCTION: Screening colonoscopies are recommended for the detection and prevention of colon cancer. Liquid colonoscopy preparations may be poorly tolerated. We evaluated the adequacy and tolerability of a novel low-cost colonoscopy preparation consisting of magnesium citrate capsules and bisacodyl (MCCB). METHODS: This is a single-center, assessor-blinded, randomized controlled trial of 51 patients undergoing screening colonoscopies, who received a bowel preparation of either 4 liters of GoLYTELY (Braintree Laboratories, Inc., Braintree, MA) or MCCB. The primary outcome was the rate of adequate colon cleanliness, defined as a total score ≥ 6 on the Boston Bowel Preparation Scale and no colon segment with a score of zero. The secondary outcome was patient satisfaction, assessed by a validated questionnaire. RESULTS: A total of 100% of patients in both arms achieved adequate colon cleanliness, and the magnesium citrate arm had superior patient satisfaction (mean satisfaction score: 54.8 vs. 172.8; p < 0.001). CONCLUSIONS: A pill-based colonoscopy preparation of MCCB may be a low-cost option for patients reluctant to consume a liquid preparation.
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We submit the first case report of a successful EUS-guided transmural LAMS placement to drain the small bowel directly into the transverse colon in a high surgical risk patient with obstruction due to severe anastomotic stricture. We describe our technique for endoscopic colo-enterostomy and are hopeful that this will become a viable option to manage non-operable high-grade distal small bowel obstruction.
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Anastomosis Quirúrgica/efectos adversos , Drenaje/métodos , Endosonografía/métodos , Enterostomía/métodos , Obstrucción Intestinal/etiología , Obstrucción Intestinal/cirugía , Intestino Delgado/cirugía , Colon/patología , Colon/cirugía , Humanos , Íleon/patología , Íleon/cirugía , Masculino , Persona de Mediana Edad , Complicaciones Posoperatorias/cirugía , Factores de RiesgoRESUMEN
Food impaction in the esophagus is a relatively common medical emergency. Most of these food impactions are relieved spontaneously. But for complete esophageal food impactions or impactions not relieved spontaneously, traditional endoscopic methods like using a Roth net, polypectomy snare, or rat or alligator tooth forceps are used to gently manipulate the food material into the stomach. However, these methods may not work in certain circumstances. We present a case of proximal esophageal food impaction that was relieved using an inflatable balloon after the conventional methods proved unsuccessful.
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OBJECTIVES: The aim of this study was to evaluate the efficacy of various bowel preparations in accomplishing colonic cleansing for optimal mucosal visualization during colonoscopy. METHODS: The study included a cohort of 980 patients who underwent colonoscopy at our endoscopy center within the last 3 years. All of the study patients were subdivided into four groups. Each group included 245 patients, all receiving a different type of bowel preparation. The bowel preparations used in this study included: magnesium citrate (Group I), a combination of oral sodium phosphate (fleets) and powder PEG-3350 (Group II), powder polyethylene glycol-3350 (PEG-3350 powder for Group III), and oral sodium phosphate (fleets for Group IV). A Colon Prep Score (CPS) was devised to compare the quality of the different bowel preparations used. The colonoscopy results from all of these patients were tabulated and analyzed statistically and expressed as mean ± 1 standard deviation. Statistical analysis was performed using a one way ANOVA with Holm-Sidak method for intergroup analysis. RESULTS: Group I patients received magnesium citrate and had a mean CPS ± 1 SD of 3.11 ± 0.91. Group II patients (fleets and powder PEG-3350 combination) achieved a CPS of 3.37 ± 1.16. The patients in Group III (powder PEG-3350) actually showed the highest mean CPS of 3.44 ± 1.12. Group IV patients who used oral sodium phosphate alone reached a mean CPS of 3.23 ± 1.01. Group III patients (powder PEG-3350 only) demonstrated a statistically higher CPS (P<0.0006) in colon cleansing as compared to Group I patients (magnesium citrate). Similarly, Group II patients (oral sodium phosphate and powder PEG-3350 combination) also showed improved colon cleansing statistically (P<0.006) as compared to Group I patients (magnesium citrate). CONCLUSIONS: Overall, all four colon preparations achieved an average CPS greater than 3.0 indicating clinically adequate colonic cleansing. However, powder PEG-3350 alone and in combination with oral sodium phosphate was observed to be statistically superior to magnesium citrate, when used for colon preparation for colonoscopy.