Qualitative Assessment of the Symptoms and Impact of Pancreatic Exocrine Insufficiency (PEI) to Inform the Development of a Patient-Reported Outcome (PRO) Instrument

Johnson, C. D.; Arbuckle, Rob; Bonner, Nicola; Connett, Gary; Domínguez‐Muñoz, Enrique; Lévy, Philippe; Staab, Doris; Williamson, Nicola; Lerch, Markus M.

doi:10.1007/s40271-017-0233-0

Cited by 43 publications

(30 citation statements)

References 33 publications

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“…On the basis of a first and preliminary version of our score (JenAbdomen-CF Score 1.0) we demonstrated that PI-CF patients report significantly more GI symptoms compared to PS-CF patients 4 . A recent study using a symptom questionnaire developed as PI-specific patient-reported outcome measure (PROM) revealed that 84% of the patients reported experiencing abdominal pain 21 . This is quite similar to our finding that 79% of our CF patients (92% PI) recurrently and regularly suffer from abdominal pain.…”

Section: Discussionmentioning

confidence: 99%

Relation of Ultrasound Findings and Abdominal Symptoms obtained with the CFAbd-Score in Cystic Fibrosis Patients

Tabori

Jaudszus

Arnold

et al. 2017

Sci Rep

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Abdominal symptoms are a hallmark of Cystic fibrosis (CF). Yet, their association with morphological abnormalities of different abdominal organs is still poorly understood. Aim was therefore to relate these symptoms, assessed with a questionnaire, to findings in abdominal ultrasound (US). In 114 CF patients of all ages, findings in US considering seventeen specific parameters were related to abdominal symptoms compiled with our novel CF-specific 26-modal symptom score (CFAbd-Score). US abnormalities were detected in 95% of the patients. Most frequent findings were pancreatic lipomatosis (88%), liver steatosis (37%), hepatomegaly (31%), and thickened bowel walls (23%). Highest burden of GI-symptoms was clearly associated with pancreatic lipomatosis (p = 0.036). In detail, patients revealing this pathology reported higher rates of abdominal pain (p = 0.018), flatulence (p = 0.006), heartburn (p = 0.04), and reflux of stomach content (p = 0.006). Patients with pancreatic sufficiency had less US-findings (p = 0.033), which in turn was associated with lower rates of abdominal symptoms. The majority of them were carriers of class IV-VI or G551D mutations. Our approach gives new insights regarding the underestimated multi-organ abdominal involvement in CF. The new score can be of high interest e.g. as a complementary tool to assess the gastrointestinal effects of promising novel CF therapeutics.

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Section: Discussionmentioning

confidence: 99%

Relation of Ultrasound Findings and Abdominal Symptoms obtained with the CFAbd-Score in Cystic Fibrosis Patients

Tabori

Jaudszus

Arnold

et al. 2017

Sci Rep

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“…Total pancreatectomy is associated with a high rate of post-operative morbidity (40–50%) and results in brittle insulin-dependent diabetes that is especially challenging to manage 67 . Total pancreatectomy is rarely indicated for the treatment of CP and is reserved only for patients who failed previous surgical interventions, who have severe pain with complete exocrine and endocrine pancreatic failure, who meet IPMN criteria for resection 67 , or who have hereditary pancreatitis or familial pancreatic cancer as a prophylactic procedure for pancreatic cancer 68 . Despite the relatively high morbidity and mortality of operative management of CP, nearly half of all patients with CP will eventually require some form of surgical intervention to treat chronic pain that is unmanageable via less-invasive means 69 – 71 .…”

Section: Clinical Features Of Chronic Pancreatitis and Their Managemementioning

confidence: 99%

Chronic pancreatitis: review and update of etiology, risk factors, and management

2018

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Chronic pancreatitis is a syndrome involving inflammation, fibrosis, and loss of acinar and islet cells which can manifest in unrelenting abdominal pain, malnutrition, and exocrine and endocrine insufficiency. The Toxic-Metabolic, Idiopathic, Genetic, Autoimmune, Recurrent and Severe Acute Pancreatitis, Obstructive (TIGAR-O) classification system categorizes known causes and factors that contribute to chronic pancreatitis. Although determining disease etiology provides a framework for focused and specific treatments, chronic pancreatitis remains a challenging condition to treat owing to the often refractory, centrally mediated pain and the lack of consensus regarding when endoscopic therapy and surgery are indicated. Further complications incurred include both exocrine and endocrine pancreatic insufficiency, pseudocyst formation, bile duct obstruction, and pancreatic cancer. Medical treatment of chronic pancreatitis involves controlling pain, addressing malnutrition via the treatment of vitamin and mineral deficiencies and recognizing the risk of osteoporosis, and administering appropriate pancreatic enzyme supplementation and diabetic agents. Cornerstones in treatment include the recognition of pancreatic exocrine insufficiency and administration of pancreatic enzyme replacement therapy, support to cease smoking and alcohol consumption, consultation with a dietitian, and a systematic follow-up to assure optimal treatment effect.

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“…Uroflowmetry is used as a diagnostic test to assess the function of the urinary tract. Stool analysis is also important for diagnosing gastrointestinal disorders, including poor nutrient absorption 27 , pancreatitis [28][29][30][31][32][33] , infections [34][35][36] and cancers 17,37,38 . In particular, the Bristol stool form scale (BSFS; BS1-BS7) categorizes the form of stool to be used as an assessment tool for the diagnosis of various bowel diseases or evaluation of treatment efficacy (Supplementary Table 1).…”

mentioning

confidence: 99%

A mountable toilet system for personalized health monitoring via the analysis of excreta

et al. 2020

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Technologies for the longitudinal monitoring of a person's health are poorly integrated with clinical workflows, and have rarely produced actionable biometric data for healthcare providers. Here, we describe easily deployable hardware and software for the long-term analysis of a user's excreta through data collection and models of human health. The 'smart' toilet, which is selfcontained and operates autonomously by leveraging pressure and motion sensors, analyses the user's urine using a standard-of-care colorimetric assay that traces red-green-blue values from images of urinalysis strips, calculates the flow rate and volume of urine using computer vision as a uroflowmeter, and classifies stool according to the Bristol stool form scale using deep learning, with performance that is comparable to the performance of trained medical personnel. Each user of the toilet is identified through their fingerprint and the distinctive features of their anoderm, and the data are securely stored and analysed in an encrypted cloud server. The toilet may find uses in the screening, diagnosis and longitudinal monitoring of specific patient populations.

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Qualitative Assessment of the Symptoms and Impact of Pancreatic Exocrine Insufficiency (PEI) to Inform the Development of a Patient-Reported Outcome (PRO) Instrument

Cited by 43 publications

References 33 publications

Relation of Ultrasound Findings and Abdominal Symptoms obtained with the CFAbd-Score in Cystic Fibrosis Patients

Relation of Ultrasound Findings and Abdominal Symptoms obtained with the CFAbd-Score in Cystic Fibrosis Patients

Chronic pancreatitis: review and update of etiology, risk factors, and management

A mountable toilet system for personalized health monitoring via the analysis of excreta

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