Development a Core Set for Adults With Cystic Fibrosis Based on the ICF

NCT06128499 | Completed

• 1 other identifier: GO 23/58
• Study Type: observational
• Target: 30
• Locations: 1 country
• Sites: 1

Brief Summary

Cystic Fibrosis (CF) affects more than one body system, mainly respiratory and digestive.The quality of life of individuals with CF is adversely affected by the increasing treatment burden in addition to multi-system involvement. The International Classification of Functioning, Disability and Health (ICF) describes human functioning and states of disability and provides a framework for organizing this information. ICF Core Sets are created by selecting the appropriate categories for the current disease from the ICF classification. ICF Core Sets are smaller than ICF, allowing practical evaluation based on ICF in clinical use. It evaluates the current situation of the patient quickly and practically, and improves interdisciplinary cooperation. Our study, it was aimed to develop a core set that quickly and practically evaluates the current state of the patient with CF in Turkey, based on ICF, and increases coordination within the interdisciplinary team. In our study, the established, very comprehensive, scientific and evidence-based guide that should be followed while creating the ICF core set will be followed. The guide consists of 4 stages: The first stage is the literature review which allows us to see the disease from the perspective of the researcher by scanning the studies on CF in the last 10 years. The second stage is the patient interview, which includes interviewing these individuals, and allows us to see the disease from the perspective of individuals diagnosed with CF. The third phase is the expert questionnaire, which we will look at from the perspective of health professionals who are knowledgeable about treating individuals with CF. The fourth stage is the consensus stage, where the final core set is decided, which includes team discussion. With the final core set developed as a result of these stages, a core set that will quickly and practically evaluate the current situation of the patient with CF in Turkey based on ICF and increase coordination within the interdisciplinary team will be ensured. Hypothesis(s) and purpose(s) on which this thesis proposal is based: H1: The ICF Core Set will be instrumental in understanding CF-specific health, disability, and function. H2: It will be a step in the development of a standard tool for the assessment of adults with CF. In our study, we propose to examine CF from the perspective of the researcher as a result of the literature review, from the perspective of the patient as a result of the qualitative research, from the perspective of the health professional as a result of the expert survey, to create a core set specific to these patients, and thus to see the different characteristics of individuals with CF in terms of function, activity, participation, and environmental factors.

Conditions

Cystic Fibrosis

Keywords

Cystic Fibrosis; ICF; ICF Core Set

Outcome Measures

Primary Outcomes (1)

• Literature Review

  A 'literature review' that allows us to view primary care CF from the perspective of the investigator. In this step, studies on CF for the last 10 years will be searched from various databases (PUBMED, Scopus, Embase).

  08.05.23- 01.12.23

Secondary Outcomes (1)

• Qualitative Research

  08.05.23- 01.12.23

Other Outcomes (1)

• Expert Survey

  08.05.23- 01.12.23

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

It is planned to reach adult individuals who are followed up with the diagnosis of CF in the Hacettepe University Department of Chest Diseases and referred to the Hacettepe University Faculty of Physical Therapy and Rehabilitation. Focus group discussions with a maximum of 7 people will be held. With the guidance of the moderator, 6 open-ended questions covering the components of the ICF will be asked.

You may qualify if:

• Individuals over the age of 18 with a diagnosis of CF
• Volunteering to participate in research

You may not qualify if:

• Not volunteering to participate in the research

Sponsors & Collaborators

• Hacettepe University: lead

Study Sites (1)

Hacettepe University

Ankara, Altındağ, 06230, Turkey (Türkiye)

Location

Related Publications (21)

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• 7.https://www.kistikfibrozisturkiye.org/wp-content/uploads/2022/11/UKKS-2021-raporu-2.pdf

  BACKGROUND

• Kabakçı E, and Gogus A 2004 International classification of functioning, disability and health Ankara:Başbakanlık Özürlüler İdaresi Başkanlığı

  BACKGROUND

• Rauch A, Cieza A, Stucki G. How to apply the International Classification of Functioning, Disability and Health (ICF) for rehabilitation management in clinical practice. Eur J Phys Rehabil Med. 2008 Sep;44(3):329-42.

  PMID: 18762742 BACKGROUND

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  PMID: 23651126 BACKGROUND

• ICF Research Branch - ICF Core Sets Projects. https://www.icf-research-branch.org/icf-core-sets-projects2 (accessed November 30, 2022)

  BACKGROUND

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  PMID: 21373900 BACKGROUND

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  PMID: 23435282 BACKGROUND

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  PMID: 16040539 BACKGROUND

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  PMID: 16024476 BACKGROUND

Related Links

• National Cystic Fibrosis Registry (TÜRKİYE)
• icf-research-branch

MeSH Terms

Conditions

Cystic Fibrosis

Condition Hierarchy (Ancestors)

Pancreatic Diseases; Digestive System Diseases; Lung Diseases; Respiratory Tract Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Infant, Newborn, Diseases

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: B.Sc., Principal Investigator

Study Record Dates

• First Submitted: May 3, 2023
• First Posted: November 13, 2023
• Study Start: January 1, 2024
• Primary Completion: March 20, 2024
• Study Completion: April 30, 2024
• Last Updated: December 27, 2024

Record last verified: 2024-12

Data Sharing

• IPD Sharing: Will not share

Locations

TU (1)