Developing a Care Guideline for Patients with Duchenne Myotonic Dystrophy and Their Families: a Literature Review

Rezazadeh Kermani, Yalda; Hosseinzadeh, Mohaddeseh; Rezaeian Aval, Atefeh; Arasteh, Azadeh; Saberi Noghabi, Elham; Ahmadi Chenari, Hadi; Eslami Aliabad, Hassan; khosravy Bonjar, Ali

Volume 3, Issue 1 (3-2024) RHMS 2024, 3(1): 1-9 | Back to browse issues page

Mendeley

Zotero

RefWorks

Rezazadeh Kermani Y, Hosseinzadeh M, Rezaeian Aval A, Arasteh A, Saberi Noghabi E, Ahmadi Chenari H, et al . Developing a Care Guideline for Patients with Duchenne Myotonic Dystrophy and Their Families: a Literature Review. RHMS 2024; 3 (1) :1-9
URL: http://jrhms.thums.ac.ir/article-1-99-en.html

Developing a Care Guideline for Patients with Duchenne Myotonic Dystrophy and Their Families: a Literature Review

Yalda Rezazadeh Kermani

, Mohaddeseh Hosseinzadeh

, Atefeh Rezaeian Aval

, Azadeh Arasteh

, Elham Saberi Noghabi

, Hadi Ahmadi Chenari

, Hassan Eslami Aliabad

, Ali Khosravy Bonjar

Department of Nursing, Faculty of allied medical science, Zabol University of medical science, Zabol, Iran , Khosravia891@gmail.com

Abstract: (22 Views)

Duchenne Muscular Dystrophy (DMD) is a life-threatening inherited disease in children, for which no effective therapies currently exist. Family members undergo emotional and socioeconomic strain while providing care for a child with Duchenne dystrophy. Therefore, there is an urgent need for patient- and family-centered care programs. The purpose of this study was to develop a comprehensive guideline to support families caring for individuals with DMD. A five-step review was undertaken as follows: defining the review question, setting the review objectives, searching databases to identify relevant studies, selecting studies according to set criteria, and extracting and analyzing data. In the third stage, a review of the existing literature was done using PubMed, CINAHL, Science Direct, Ovid, Embase, Pro Quest, Web of science and Google Scholar between 1991 and 2024. Researchers used the MESH keywords muscular dystrophy, Duchenne, comprehensive health care, and caregiver separately or in combination. The findings identified disease-related complications and corresponding care interventions that can be undertaken by family members. These interventions included pain management, promotion of muscle strength, assistance with activities of daily living, considerations related to medication use, cardiac management, respiratory care, gastrointestinal management (including nutrition and swallowing), psychosocial support, and management of endocrine and metabolic functions. Since Duchenne dystrophy is chronic, self-care and the role of the family in these patients are very important. Family contributes significantly to preventing physical, psychological, and social problems in these patients and improves their quality of life.

Keywords: Muscular dystrophy, Duchenne, Comprehensive health care, Caregiver

Full-Text [PDF 1051 kb] (34 Downloads)

Subject: General
Received: 2025/10/19 | Accepted: 2025/12/27 | Published: 2026/01/10