Literature DB >> 33034535

Health-Related Quality of Life and Emotional Distress Among Mothers of Sons With Muscular Dystrophy as Compared to Sex- and Age Group-Matched Controls.

Jamie L Jackson1,2, Christina X Korth1, Carine E Leslie1, Jennifer Cotto1, May Ling Mah3, Kan Hor3, Linda Cripe3, Samiah Al-Zaidy2, Eric M Camino4, Kathleen Church4, Kelly J Lehman4, Victoria Shay3, Jerry R Mendell2,4.   

Abstract

The health-related quality of life and emotional distress among mothers of sons with Duchenne or Becker muscular dystrophies (n = 82) were compared to sex- and age group-matched controls (n = 26). Participants self-reported health-related quality of life for themselves and their son(s), emotional distress, and mood/anxiety-related medication. Mothers reported poorer health-related quality of life across all domains of their health-related quality of life, as well as higher levels of emotional distress. Clinically elevated symptoms of anxiety were reported by 39% of mothers. Mothers' report of poorer health-related quality of life for their son(s) was a significant predictor of worse health-related quality of life and emotional distress for themselves across most domains. Additionally, older age of mothers predicted greater energy/less fatigue and lower levels of anxiety. Results highlight the need for screening emotional distress among mothers, as well as consideration for accessible interventions to improve the psychosocial functioning among these families.

Entities:  

Keywords:  anxiety; caregiving; depression; muscular dystrophy; quality of life

Mesh:

Year:  2020        PMID: 33034535      PMCID: PMC7854939          DOI: 10.1177/0883073820962927

Source DB:  PubMed          Journal:  J Child Neurol        ISSN: 0883-0738            Impact factor:   1.987


  44 in total

1.  Cognitive and Neurobehavioral Profile in Boys With Duchenne Muscular Dystrophy.

Authors:  Rudaina Banihani; Sharon Smile; Grace Yoon; Annie Dupuis; Maureen Mosleh; Andrea Snider; Laura McAdam
Journal:  J Child Neurol       Date:  2015-02-06       Impact factor: 1.987

2.  Quality of life in Duchenne muscular dystrophy: the subjective impact on children and parents.

Authors:  Ilaria Baiardini; Carlo Minetti; Simona Bonifacino; Anna Porcu; Catherine Klersy; Paolo Petralia; Sara Balestracci; Filippo Tarchino; Stefania Parodi; Giorgio Walter Canonica; Fulvio Braido
Journal:  J Child Neurol       Date:  2011-04-11       Impact factor: 1.987

Review 3.  Change in natural history of Duchenne muscular dystrophy with long-term corticosteroid treatment: implications for management.

Authors:  Richard T Moxley; Shree Pandya; Emma Ciafaloni; Deborah J Fox; Kim Campbell
Journal:  J Child Neurol       Date:  2010-06-25       Impact factor: 1.987

4.  Diagnostic Accuracy of Phenotype Classification in Duchenne and Becker Muscular Dystrophy Using Medical Record Data1.

Authors:  Jennifer G Andrews; Molly M Lamb; Kristin Conway; Natalie Street; Christina Westfield; Emma Ciafaloni; Dennis Matthews; Christopher Cunniff; Shree Pandya; Deborah J Fox
Journal:  J Neuromuscul Dis       Date:  2018

5.  Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

Authors:  Maria Clara Drummond Soares de Moura; Hanna Camila Wutzki; Mariana Callil Voos; Maria Bernadete Dutra Resende; Umbertina Conti Reed; Renata Hydee Hasue
Journal:  Arq Neuropsiquiatr       Date:  2015-01-01       Impact factor: 1.420

6.  Secondary Conditions Among Males With Duchenne or Becker Muscular Dystrophy.

Authors:  Rebecca Latimer; Natalie Street; Kristin Caspers Conway; Kathy James; Christopher Cunniff; Joyce Oleszek; Deborah Fox; Emma Ciafaloni; Christina Westfield; Pangaja Paramsothy
Journal:  J Child Neurol       Date:  2017-04-09       Impact factor: 1.987

Review 7.  Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management.

Authors:  Katharine Bushby; Richard Finkel; David J Birnkrant; Laura E Case; Paula R Clemens; Linda Cripe; Ajay Kaul; Kathi Kinnett; Craig McDonald; Shree Pandya; James Poysky; Frederic Shapiro; Jean Tomezsko; Carolyn Constantin
Journal:  Lancet Neurol       Date:  2009-11-27       Impact factor: 44.182

8.  Managing Duchenne muscular dystrophy--the additive effect of spinal surgery and home nocturnal ventilation in improving survival.

Authors:  Michelle Eagle; John Bourke; Robert Bullock; Mike Gibson; Jwalant Mehta; Dave Giddings; Volker Straub; Kate Bushby
Journal:  Neuromuscul Disord       Date:  2007-05-08       Impact factor: 4.296

9.  Are Pediatric Critical Personnel Satisfied With Their Lives? Prediction of Satisfaction With Life From Burnout, Posttraumatic Stress, and Posttraumatic Growth, and Comparison With Noncritical Pediatric Staff.

Authors:  Rocío Rodríguez-Rey; Alba Palacios; Jesús Alonso-Tapia; Elena Pérez; Elena Álvarez; Ana Coca; Santiago Mencía; Ana Marcos; Juan Mayordomo-Colunga; Francisco Fernández; Fernando Gómez; Jaime Cruz; Victoria Ramos; Marta Olmedilla
Journal:  Pediatr Crit Care Med       Date:  2019-03       Impact factor: 3.624

Review 10.  Developing a literature base to understand the caregiving experience of parents of children with cancer: a systematic review of factors related to parental health and well-being.

Authors:  Anne Klassen; Parminder Raina; Samantha Reineking; David Dix; Sheila Pritchard; Maureen O'Donnell
Journal:  Support Care Cancer       Date:  2007-07       Impact factor: 3.359

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  1 in total

Review 1.  Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN.

Authors:  Jill Carlton; Philip A Powell
Journal:  Health Qual Life Outcomes       Date:  2022-04-02       Impact factor: 3.186

  1 in total

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