The Psychosocial Impact of Ptosis as a Symptom of Myasthenia Gravis: A Qualitative Study

Abstract

The aim of this qualitative study was to investigate the psychosocial impact of ptosis as a symptom of Myasthenia Gravis (MG). Participants were recruited from a MG patient group on Facebook. 166 participants answered a series of open ended questions examining the impact of ptosis, and responses were analysed using Inductive Thematic Analysis, which revealed four main themes. The first highlighted the extent to which ptosis impacted negatively on psychosocial functioning. The second related to ways in which ptosis can be framed in a positive way, eg, as a believable symptom. The final two themes revealed the complex inter-relationships between functional and appearance-related impacts, and a desire from many participants for health care professionals to provide more support directly related to their ptosis. This study suggests that ptosis impacts in ways not currently recognized in literature and practice.

Recruiting for health, medical or psychosocial research using Facebook: Systematic review

“…These included two studies examining use of illicit drugs ( Barratt et al, 2015 , Bauermeister et al, 2012 ), six studies that recruited men who have sex with men, and one study that recruited women who have sex with women. Other studies recruited participants with rare diseases such as myasthenia gravis (an auto-immune disease: Richards et al, 2014 ), Klinefelter syndrome ( Close et al, 2013 ), Haemophilia ( DiBenedetti et al, 2014 ) and neurofibromatosis ( Johnson et al, 2014 ). Other populations targeted included people living with HIV ( Yuan et al, 2014 ), ethnic minorities ( Carlini et al, 2014 ), parents of adolescents ( Gilligan et al, 2014 ), low-income earners ( Lohse, 2013 ), people with mental disorders ( King et al, 2014 , Morgan et al, 2010 ) and health professionals ( Child et al, 2014 , Mannix et al, 2014 ).…”

“…Other methods used to recruit participants included posting information about the study on the Facebook pages of existing groups related to the topic of interest, and sending private messages to people identified through a search of Facebook ( Child et al, 2014 , Barratt et al, 2015 , Fazzino et al, 2015 , Dibenedetti et al, 2014 , Gilligan et al, 2014 , Martinez et al, 2014 , Richards et al, 2014 , Parkinson and Bromfield, 2013 , Valdez et al, 2014 ). Boyce et al (2013) and Mannix et al (2014) , for example, used a snowball recruitment approach inviting the researchers' personal Facebook friends to participate in the study and in turn forward the invitation onto their own Facebook friends.…”

Prevalence and Associated Factors of Depressive Symptoms in Patients with Myasthenia Gravis: A Cross-Sectional Study of Two Tertiary Hospitals in Riyadh, Saudi Arabia

“…MG is a chronic disease that limits patients' physical and social activities and the ability to enjoy hobbies [4]. In addition, ptosis, ocular misalignment, and nasal speech might also cause social withdrawal [29, 30]. Patients with uncontrolled MG are usually on a high-dose prednisolone; the side effects of which, especially weight gain and changes in facial expression, may increase the risk of depression [7].…”

Factors associated with quality of life of people with Myasthenia Gravis

“…These symptoms influence daily life of the patients. Ptosis, which is visible, makes the affected self-conscious and thus brings about social withdrawal [ 1 ], and diplopia, double vision, is a constant threat to the well-being of the affected while they are awake. Fatigue and other motor weakness hinder the affected from completing basic daily tasks, including taking care of their hygiene [ 2 ].…”