Clinical evaluation of an evidence-based method based on food characteristics to adjust pancreatic enzyme supplements dose in cystic fibrosis

Calvo-Lerma, Joaquim; Boon, Mieke; Colombo, Carla; Koning, Barbara de; Asseiceira, I.; Garriga, M.; Roca, María; Claes, I.; Bulfamante, Anna; Walet, Sylvia; Pereira, Luí­sa Álvares; Ruperto, Mar; Masip, Etna; Asensio-Grau, Andrea; Giana, A.; Affourtit, Philine; Vicente-Santamaría, Saioa; Andrés, Ana; Boeck, K. De; Hulst, Jessie M.; Ribes-Koninckx, Carmen

doi:10.1016/j.jcf.2020.11.016

Cited by 12 publications

(12 citation statements)

References 38 publications

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“…Mobile apps were often designed to assist with this need. Symptom trackers were a common feature with or without medication alerts or treatment information (pancreatic enzyme replacement therapy for people with cystic fibrosis28 55). Some had a function that allowed sharing of patient entered data with their healthcare team 56 57.…”

Section: Resultsmentioning

confidence: 99%

Needs of people with rare diseases that can be supported by electronic resources: a scoping review

et al. 2022

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ObjectivesRare diseases are characterised by low incidence, often with little evidence for effective treatments. Isolated patients and specialist centres for rare diseases are increasingly connected, thanks to the internet. This scoping review aimed to identify issues facing people with a rare disease that authors report may be addressed by electronic resources (mobile applications, websites, social media platforms, telehealth and online portals).DesignScoping review guided by the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines.Data sourcesMedline, Embase and PsycInfo were searched, supplemented by hand searches of selected journals, in July 2021.Eligibility criteriaPeer-reviewed literature in English was searched using terms for rare disease (incidence <1:2000), electronic modalities (eg, mobile phone) and patient support terms. No date limit was set. Conference abstracts were included.Data extraction and synthesisData extracted: rare disease/group of diseases, name of the e-resource, need identified in the patient cohort, features of the e-resource, any other findings or observations of interest. From this, a framework was developed synthesising features across diseases and resources.ResultsSeventy-two papers were found (from 383). Fifty-six electronic resources were described in 64 papers, while 12 papers were exploratory studies. Cystic fibrosis (n=28) was the most frequently addressed, followed by haemophilia (n=16).Four domains and 23 subdomains of needs were extracted from the papers. The domains of needs were: support for self-management, access to high-quality information, access to appropriate specialist services, and social support. Subdomains are sometimes related to needs of individual rare diseases (eg, social isolation due to infection risk in people with cystic fibrosis). Fifteen electronic resources were identified that supported parents of children with rare disorders.ConclusionsWhile it can be argued that rare diseases, per se, may be no less distressing or onerous to care for than a high prevalence disease, rare diseases have unique features: the lengthy odyssey to find a diagnosis, then appropriate specialists, the lack of evidence around effective treatments, guidelines or access to knowledgeable general health service providers. Designers of electronic resources are urged to consult key stakeholders to enhance the effectiveness and usability of resources for people with a rare disease.

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Section: Resultsmentioning

confidence: 99%

Needs of people with rare diseases that can be supported by electronic resources: a scoping review

et al. 2022

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“…The high frequency of GI symptoms in our study may indicate a potential for improving the guidance of patients to optimise PERT intake. In paediatric CF populations, the introduction of a self-management mobile app to support nutritional intake and the individual adjustment of PERT has shown promising effects on PERT adherence and improved GI functioning [ 20 ].…”

Section: Discussionmentioning

confidence: 99%

Correlates of Pancreatic Enzyme Replacement Therapy Intake in Adults with Cystic Fibrosis: Results of a Cross-Sectional Study

et al. 2022

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Most people with cystic fibrosis (pwCF) develop pancreatic insufficiency and are treated with pancreatic enzyme replacement therapy (PERT). We aimed to describe the use of PERT and assess the correlates of PERT dose in adult pwCF. In a cross-sectional study at the Copenhagen CF Centre, the participants reported PERT intake, gastrointestinal (GI) symptoms and the use of concomitant treatments. Demographic and clinical characteristics were extracted from the Danish CF Registry. We used linear regression to assess the correlates of PERT dose per kg bodyweight (U-lipase/kg). We included 120 pwCF with a median age of 32.9 years, 46% women and 72% F508delta homozygote. The PERT dose ranged from 0 to 6160 U-lipase/kg per main meal (mean 1828; SD 1115). The PERT dose was associated with participants’ sex (men vs. women: 661; 95% CI: 302; 1020 U-lipase/kg), age (−16; 95% CI: −31; −1 U-lipase/kg per year) and weight (−45; 95% CI: −58; −31 U-lipase/kg per kg). Having less frequent constipation and being lung transplanted were also associated with a higher PERT dose. A third of participants did not take PERT for snacks, and this was associated with the frequency of diarrhoea. These findings indicate that PERT intake may be improved to reduce GI symptoms.

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“…Research has found that similar MIDAT for patients with cystic fibrosis was effective in supporting medical monitoring, adjusting medication and improving quality of life in patients. [69][70][71][72]. Other possibilities of this novel tool include, but are not limited to, analyzing dietary inputs to determine insulin requirements, linking and incorporating information from continuous glucose monitors, adjusting insulin dosing and completing delivery through insulin pumps to create a self-regulating, realtime responsive, "smart" system for PWD.…”

Section: Discussionmentioning

confidence: 99%

Dietary Aspects to Incorporate in the Creation of a Mobile Image-Based Dietary Assessment Tool to Manage and Improve Diabetes

et al. 2021

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Diabetes is the seventh leading cause of death in United States. Dietary intake and behaviors are essential components of diabetes management. Growing evidence suggests dietary components beyond carbohydrates may critically impact glycemic control. Assessment tools on mobile platforms have the ability to capture multiple aspects of dietary behavior in real-time throughout the day to inform and improve diabetes management and insulin dosing. The objective of this narrative review was to summarize evidence related to dietary behaviors and composition to inform a mobile image-based dietary assessment tool for managing glycemic control of both diabetes types (type 1 and type 2 diabetes). This review investigated the following topics amongst those with diabetes: (1) the role of time of eating occasion on indicators of glycemic control; and (2) the role of macronutrient composition of meals on indicators of glycemic control. A search for articles published after 2000 was completed in PubMed with the following sets of keywords “diabetes/diabetes management/diabetes prevention/diabetes risk”, “dietary behavior/eating patterns/temporal/meal timing/meal frequency”, and “macronutrient composition/glycemic index”. Results showed eating behaviors and meal macronutrient composition may affect glycemic control. Specifically, breakfast skipping, late eating and frequent meal consumption might be associated with poor glycemic control while macronutrient composition and order of the meal could also affect glycemic control. These factors should be considered in designing a dietary assessment tool, which may optimize diabetes management to reduce the burden of this disease.

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Clinical evaluation of an evidence-based method based on food characteristics to adjust pancreatic enzyme supplements dose in cystic fibrosis

Cited by 12 publications

References 38 publications

Needs of people with rare diseases that can be supported by electronic resources: a scoping review

Needs of people with rare diseases that can be supported by electronic resources: a scoping review

Correlates of Pancreatic Enzyme Replacement Therapy Intake in Adults with Cystic Fibrosis: Results of a Cross-Sectional Study

Dietary Aspects to Incorporate in the Creation of a Mobile Image-Based Dietary Assessment Tool to Manage and Improve Diabetes

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