Academy of Nutrition and Dietetics: 2020 Cystic Fibrosis Evidence Analysis Center Evidence-Based Nutrition Practice Guideline

McDonald, Catherine M.; Alvarez, Jessica A.; Bailey, Julianna; Bowser, Ellen K.; Farnham, Kristen; Mangus, Mark; Padula, Laura; Porco, Kathleen; Rozga, Mary

doi:10.1016/j.jand.2020.03.015

Cited by 56 publications

(54 citation statements)

References 157 publications

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“…Although the surveys do not identify reasons for the broad availability and use of scales, some features are amenable to promote adoption in the community. First, surveillance for weight and growth trends and nutrition management are standard elements of CF care [ 23 ]. Second, home scales may require less technical support and instruction than other platforms, such as smartphone applications and spirometers [ 24 ].…”

Section: Discussionmentioning

confidence: 99%

Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network

Ong

Citters

Dowd

et al. 2021

Journal of Cystic Fibrosis

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Background: Cystic fibrosis (CF) programs and people with CF (PwCF) employed various monitoring methods for virtual care during the COVID-19 pandemic. This paper characterizes experiences with remote monitoring across the U.S. CF community. Methods: The CF Foundation (CFF) sponsored distribution of home spirometers (April 2020 to May 2021), surveys to PwCF and CF programs (July to September 2020), and a second program survey (April to May 2021). We used mixed methods to explore access, use, and perspectives regarding the use of remote monitoring in future care. Results: By October 2020, 13,345 spirometers had been distributed, and 19,271 spirometers by May 2021. Programs (n = 286) estimated proportions of PwCF with home devices increased over seven months: spirometers (30% to 70%), scales (50% to 70%), oximeters (5% to 10%) with higher estimates in adult programs for spirometers and oximeters. PwCF (n = 378) had access to scales (89%), followed by oximeters (48%) and spirometers (47%), often using scales and oximeters weekly, and spirometers monthly. Over both surveys, some programs had no method to collect respiratory specimens for cultures associated with telehealth visits (47%, n = 132; 41%, n = 118). Most programs (81%) had a process for phlebotomy associated with a telehealth visit, primarily through off-site labs. Both PwCF and programs felt future care should advance remote monitoring and recommended improvements for access, training, and data collection systems. Conclusions: PwCF and programs experienced unprecedented access to remote monitoring and raised its importance for future care. Improvements to current systems may leverage these shared experiences to augment future care models.

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Section: Discussionmentioning

confidence: 99%

Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network

Ong

Citters

Dowd

et al. 2021

Journal of Cystic Fibrosis

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“…As treatment options and longevity improve for people with CF, there is an increasing need for individualized nutrition therapy at every life stage with consideration of long-term health outcomes. 48 In addition, a more global approach to nutritional health with overweight and obesity management must include consideration of physical activity, mental/emotional health, and social determinants of health such as food insecurity.…”

Section: Nutrition Guidance In Cf: the Need For A Personalized Approachmentioning

confidence: 99%

“…61 The Academy of Nutrition and Dietetics CF Nutrition Guidelines suggest: 1) consuming macronutrients (carbohydrates, protein, and fat) in the same percentage distribution as is recommended for the typical, agematched population and 2) an age-appropriate diet that emphasizes foods associated with positive health outcomes in the general population with high nutrient density foods (including vegetables, fruits, whole grains, seafood, eggs, beans and peas, nuts and seeds, dairy products, and meats and poultry) as tolerated and preferred by the individual with CF, and energy needs adjusted to achieve or maintain normal growth (pediatrics) or BMI status (adults). 48…”

Section: Recommendations For a Healthful Path Forwardmentioning

confidence: 99%

Overweight and cystic fibrosis: An unexpected challenge

Gabel

Fox

Grimes

et al. 2021

Pediatric Pulmonology

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Achieving a healthy weight balance has been a central focus of care for people who have cystic fibrosis (CF). Over the years, the emphasis has primarily been on promoting weight gain to optimize pulmonary outcomes. With continued improvements in CF care, including highly effective CF modulators available for many people, the CF community is now experiencing a new challenge: addressing the concern that some people are gaining weight excessively. While at this time, we do not know to what extent overweight and obesity will affect health outcomes for people with CF, it is likely that excessive weight gain may have negative health impacts similar to those seen in the general population. In this paper, we review the history of nutritional guidelines for people with CF, as well as more recent trends toward overweight and obesity for some. A multidisciplinary approach is needed to collaboratively start the oftentimes difficult conversation regarding excessive weight gain, and to identify resources to help people achieve and maintain a healthy weight through diet, exercise, and behavioral modification.

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“…A competent‐level RDN in nutrition support could be an RDN starting practice after registration or an experienced RDN who has recently assumed responsibility to provide nutrition support care for patients/clients. Examples of patients/clients evaluated by a competent‐level RDN include those with malnutrition, 62–66 gastrointestinal disorders (eg, inflammatory bowel disease), cystic fibrosis, 67 and dysphagia 68–71 …”

Section: Application To Practicementioning

confidence: 99%

Academy of Nutrition and Dietetics and American Society for Parenteral and Enteral Nutrition: Revised 2021 standards of practice and standards of professional performance for registered dietitian nutritionists (competent, proficient, and expert) in nutrition support

Corrigan

Bobo²,

Rollins³

et al. 2021

Nut in Clin Prac

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Nutrition support is a therapy that crosses all ages, diseases, and conditions as health care practitioners strive to meet the nutrition requirements of individuals who are unable to meet nutrition and/or hydration needs with oral intake alone. Registered dietitian nutritionists (RDNs), as integral members of the nutrition support team provide needed information, such as identification of malnutrition risk, macro‐ and micronutrient requirements, and type of nutrition support therapy (eg, enteral or parenteral), including the route (eg, nasogastric vs nasojejunal or tunneled catheter vs port). The Dietitians in Nutrition Support Dietetic Practice Group, American Society for Parenteral and Enteral Nutrition, along with the Academy of Nutrition and Dietetics Quality Management Committee, have updated the Standards of Practice (SOP) and Standards of Professional Performance (SOPP) for RDNs working in nutrition support. The SOP and SOPP for RDNs in Nutrition Support provide indicators that describe the following 3 levels of practice: competent, proficient, and expert. The SOP uses the Nutrition Care Process and clinical workflow elements for delivering patient/client care. The SOPP describes the 6 domains that focus on professional performance. Specific indicators outlined in the SOP and SOPP depict how these standards apply to practice. The SOP and SOPP are complementary resources for RDNs and are intended to be used as a self‐evaluation tool for assuring competent practice in nutrition support and for determining potential education and training needs for advancement to a higher practice level in a variety of settings.

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Academy of Nutrition and Dietetics: 2020 Cystic Fibrosis Evidence Analysis Center Evidence-Based Nutrition Practice Guideline

Cited by 56 publications

References 157 publications

Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network

Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network

Overweight and cystic fibrosis: An unexpected challenge

Academy of Nutrition and Dietetics and American Society for Parenteral and Enteral Nutrition: Revised 2021 standards of practice and standards of professional performance for registered dietitian nutritionists (competent, proficient, and expert) in nutrition support

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