Literature DB >> 29910140

Cystic fibrosis-related education: Are we meeting patient and caregiver expectations?

Kevin P Lonabaugh1, Katherine S O'Neal2, Heather McIntosh3, Michelle Condren4.   

Abstract

OBJECTIVE: The purpose of this study was to improve patient education in clinic by evaluating patient perceptions of education provided, as well as patient self-confidence related to topics within cystic fibrosis (CF). The study assessed whether self-confidence matched knowledge and defined patient-specific goals for education timing and information sources.
METHODS: Age specific questionnaires were distributed over four months to patients 11 years of age and older and caregivers of patients of all ages at a single CF Foundation accredited care center.
RESULTS: Participants reported frequent education on all topics except for reproductive effects of CF and mental health. A positive correlation was seen between overall confidence in CF-related knowledge and performance on a validated knowledge scale in adolescent caregivers only. Participants expected all educational milestones to be met by 13-14 years of age.
CONCLUSIONS: Gaps in CF education remain and educational models should deliver information by the early teens without overlooking reproductive effects and mental health. PRACTICE IMPLICATIONS: The educational model for CF clinics should become more comprehensive by including education on topics such as mental health and reproductive effects. Providers are an important pathway for information and should not disregard the value of education provided during clinic visits.
Copyright © 2018 Elsevier B.V. All rights reserved.

Entities:  

Keywords:  Cystic fibrosis; Nutrition; Patient education; Patient perspectives; Reproduction; Treatment

Mesh:

Year:  2018        PMID: 29910140     DOI: 10.1016/j.pec.2018.06.004

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  4 in total

1.  Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire.

Authors:  Sandra Dury; Jeanne-Marie Perotin; Bruno Ravoninjatovo; Catherine Llerena; Julien Ancel; Pauline Mulette; Muriel Griffon; Sophie Carré; Amélie Perrin; François Lebargy; Gaëtan Deslée; Claire Launois
Journal:  BMC Pulm Med       Date:  2021-08-18       Impact factor: 3.317

2.  CF and male health: Sexual and reproductive health, hypogonadism, and fertility.

Authors:  Farah Naz Khan; Kelly Mason; Andrea H Roe; Vin Tangpricha
Journal:  J Clin Transl Endocrinol       Date:  2021-12-06

3.  Translation, cross-cultural adaptation and psychometric evaluation of the Brazilian version of the Cystic Fibrosis Knowledge Scale (CFKS).

Authors:  Karolinne Souza Monteiro; Thayla Amorim Santino; Smita Pakhale; Louise Balfour; Karla Morganna Pereira Pinto de Mendonça
Journal:  PLoS One       Date:  2021-11-16       Impact factor: 3.240

4.  Standards of Nutritional Care for Patients with Cystic Fibrosis: A Methodological Primer and AGREE II Analysis of Guidelines.

Authors:  Maria G Grammatikopoulou; Tonia Vassilakou; Dimitrios G Goulis; Xenophon Theodoridis; Meletios P Nigdelis; Arianna Petalidou; Konstantinos Gkiouras; Dimitrios Poulimeneas; Olga Alexatou; Kyriaki Tsiroukidou; Georgios Marakis; Zoe Daniil; Dimitrios P Bogdanos
Journal:  Children (Basel)       Date:  2021-12-14
  4 in total

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