Jove
Visualize
Contact Us
JoVE
x logofacebook logolinkedin logoyoutube logo
ABOUT JoVE
OverviewLeadershipBlogJoVE Help Center
AUTHORS
Publishing ProcessEditorial BoardScope & PoliciesPeer ReviewFAQSubmit
LIBRARIANS
TestimonialsSubscriptionsAccessResourcesLibrary Advisory BoardFAQ
RESEARCH
JoVE JournalMethods CollectionsJoVE Encyclopedia of ExperimentsArchive
EDUCATION
JoVE CoreJoVE BusinessJoVE Science EducationJoVE Lab ManualFaculty Resource CenterFaculty Site
Terms & Conditions of Use
Privacy Policy
Policies

Related Concept Videos

Guidelines for Writing Outcome01:11

Guidelines for Writing Outcome

2.9K
When developing expected outcomes for a patient care plan, the nurse should adhere to the following recommendations:
Patient outcomes reflect the patient's response to the goal rather than what the nurse aims to achieve. Terminology should be observable and measurable to avoid the reader's interpretation. The desired outcome should be realistic and achievable in the designated care timeframe. Expected outcomes should align with adjunctive therapies. The outcome should enhance care...
2.9K
Guidelines for Nursing Documentation I01:30

Guidelines for Nursing Documentation I

1.1K
Quality documentation and reporting share essential characteristics that ensure they are practical and valuable resources for those who use them. These characteristics are:
Factual:  
The following points emphasize the significance of upholding accurate and unbiased documentation in healthcare.
1.1K
Methods of Documentation VI: Case Management Model01:15

Methods of Documentation VI: Case Management Model

617
The case management model is a multidisciplinary approach that involves healthcare professionals from diverse disciplines, such as physicians, nurses, therapists, social workers, and pharmacists, working collaboratively to address the various needs of patients. Each healthcare professional brings unique expertise and perspectives, contributing to a more comprehensive understanding of the patient's condition and tailoring treatment plans accordingly.
For example, a patient with a chronic...
617
Guidelines for Nursing Documentation II01:26

Guidelines for Nursing Documentation II

1.1K
Effective documentation is an integral part of nursing practice. Here are some essential guidelines to follow when documenting patient care:
Timely documentation is crucial to ensure continuity of care for patients. Any delays in recording or reporting medical information can result in medical errors and even adverse patient outcomes. From medication administration to diagnostic test results, every detail must be accurately and promptly documented to provide the best possible care for patients.
1.1K
Health Literacy01:21

Health Literacy

4.1K
Health literacy is an individual's or a community's capacity to comprehend, receive, read, and use relevant healthcare information and services. The World Health Organization (WHO, 2018) defines health literacy as the cognitive and social skills that determine the ability of individuals to gain access to, understand, and use information in ways that promote and maintain good health. As a result, the WHO helps individuals manage long-term health concerns, participate in preventative...
4.1K
Pre-Procedural Guidelines for Assessing Blood Pressure01:10

Pre-Procedural Guidelines for Assessing Blood Pressure

614
Accurate blood pressure assessment is crucial for diagnosing and managing various health conditions. To ensure the reliability of these measurements, healthcare professionals must adhere to standardized pre-procedural guidelines. These guidelines enhance patient safety and improve the overall quality of healthcare. The following steps are essential for obtaining accurate and consistent blood pressure readings, from using the appropriate tools to ensuring effective communication with the...
614

You might also read

Related Articles

Articles linked to this work by shared authors, journal, and citation graph.

Sort by
Same author

ALG14 Variants Contribute to a Congenital Disorder of Glycosylation Characterized by Congenital Myasthenia and Epilepsy.

HGG advances·2026
Same author

FXN protomutations are the source of pathogenic expanded GAA alleles in Friedreich ataxia and explain its unequal population distribution.

Human molecular genetics·2026
Same author

Compound Heterozygote Friedreich Ataxia Patients With Covert Proximal FXN Gene Deletions.

Annals of clinical and translational neurology·2026
Same author

Disease-specific growth charts capture characteristic growth patterns in children with PMM2 - CDG.

Molecular genetics and metabolism·2026
Same author

Heritability of Long-Term Complications in Classic Galactosemia.

Journal of inherited metabolic disease·2026
Same author

Incidence of and Risk Factors for Repeat Adverse Drug Events: A Systematic Review.

Journal of patient safety·2026

Related Experiment Video

Updated: Aug 23, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
06:16

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Published on: June 6, 2020

3.8K

A Participatory Framework for Plain Language Clinical Management Guideline Development.

Rita Francisco1,2,3, Susana Alves3,4, Catarina Gomes3,4

  • 1Associate Laboratory i4HB-Institute for Health and Bioeconomy, School of Science and Technology, NOVA University Lisbon, 2819-516 Caparica, Portugal.

International Journal of Environmental Research and Public Health
|October 27, 2022
PubMed
Summary

Developing plain language clinical management guidelines (CMGs) for rare diseases like PMM2-CDG improves accessibility. A participatory approach ensures patient and family needs are met, enhancing guideline usability and quality of life.

Keywords:
PMM2-CDGclinical management guidelinescongenital disorders of glycosylation (CDG)health literacyparticipatory medicinepeople-centricplain languagerare diseases

More Related Videos

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
14:32

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care

Published on: February 16, 2011

23.8K
A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
14:43

A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting

Published on: January 12, 2018

12.0K

Related Experiment Videos

Last Updated: Aug 23, 2025

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
06:16

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting

Published on: June 6, 2020

3.8K
Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
14:32

Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care

Published on: February 16, 2011

23.8K
A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting
14:43

A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting

Published on: January 12, 2018

12.0K

Area of Science:

  • Medical Informatics
  • Health Literacy
  • Rare Diseases

Background:

  • Clinical Management Guidelines (CMGs) often use technical language, hindering access for patients and families.
  • Patient and family perspectives are frequently excluded from the development of treatment guidelines.
  • Congenital Disorders of Glycosylation (CDG), including PMM2-CDG, require accessible management protocols.

Purpose of the Study:

  • To develop a methodology for incorporating stakeholder needs into CMG development.
  • To pilot this methodology using PMM2-CDG CMGs and the CDG community.
  • To enhance the comprehension and accessibility of CMGs for all users.

Main Methods:

  • Surveyed 89 PMM2-CDG families and 35 professionals on CMG needs and preferences.
  • Quantified stakeholder requirements using an electronic questionnaire.
  • Developed a participatory framework based on health literacy principles.

Main Results:

  • Most families and professionals found CMGs relevant and valuable for CDG management.
  • Key challenges identified were lack of CMG awareness and plain language.
  • Stakeholders advocated for patient involvement and plain language adaptation of CMGs.

Conclusions:

  • A people-centric methodology was created to improve CMG development and accessibility.
  • Six resources, including a plain language PMM2-CDG CMG, were produced.
  • This approach can enhance patient quality of life and be applied to other clinical guidelines.