Chronic pain, psychological distress, and quality of life in males with Duchenne muscular dystrophy

Abstract

Aim: To describe chronic pain in Duchenne muscular dystrophy (DMD) from children's/adolescents' perspectives, explore patient variables associated with selfreported pain, and examine the relationship between chronic pain, psychological functioning, and health-related quality of life (HRQoL).Method: This observational study included a paediatric cohort (aged 8-18 years; median age 9 years 4 months) with DMD under multidisciplinary care (n = 45). Clinical data of the latest visit were extracted from the electronic health record and assessment of pain, psychological distress, and HRQoL were performed during the same visit.Results: Thirty-two patients reported pain during the previous 4 weeks, and 18 reported persistent or recurrent chronic pain. Average pain intensity of chronic pain was mild, with regions of the legs (n = 12), lower back (n = 6), hips (n = 6), and shoulder (n = 6) most frequently affected. Older age, higher body mass index, being non-ambulatory, wheelchair dependency, and spinal deformities were contextual variables related to the presence of chronic pain. Furthermore, chronic pain was significantly associated with psychological distress and reduced HRQoL in paediatric patients with DMD.Interpretation: Chronic pain in paediatric DMD is frequent and widespread, highlighting the need for pain to be addressed in the routine care of affected young people. Chronic pain may make a significant contribution to psychological distress and impaired HRQoL in paediatric patients with DMD.

Reliability and Validity of the Korean Version of the Duchenne Muscular Dystrophy Functional Ability Self-Assessment Tool

“…Compared to these two well-validated comprehensive scales, the CFSD and EK scales, the DMDSAT lacks items assessing other aspects of DMD, especially dysphagia and pain. Since dysphagia and pain are symptoms that require careful attention and are strongly associated with quality of life [ 23 ], extending to DMDSAT questionnaires on swallowing function and pain would provide more information and help plan the most appropriate intervention. Although DMDSAT is a scoring system, its purpose is to document functional status rather than to provide a quantitative evaluation of physical function.…”

The Impact of COVID-19 on Families With Pediatric Muscular Dystrophy Patients

“…Nevertheless, the lack of precise demographic data and the small sample size limit the generalizability of these findings. However, pediatric neuromuscular disorders are rare, and a small sample size is not unusual for this population [17][18][19][20][21][22][23][24]. Other limitations include possible selection bias, in particular sampling and volunteer bias subtypes.…”

Quality of life in Duchenne muscular dystrophy: It's about more than pain management

“…It is interesting to see research carried out in order to understand the role and perception of pain and management (such as cough assistance) for individuals like me. 1,2 Personally, I cannot say that pain specifically or the use of cough assist have affected my QoL as a whole. The factor that has contributed most meaningfully has been participation in family life.…”

“…Additionally, I have a number of positional aids that are essential for my comfort. I was not surprised to see that no participants in the pain study by Huang et al reported taking analgesics, 1 as they do not help me effectively. Consequently, the fear of experiencing pain is sometimes greater than the pain itself, so I avoid getting into certain situations.…”

“…As a 25‐year‐old person with Duchenne muscular dystrophy, I can say that there have been quite a few changes in my quality of life (QoL) over the years. It is interesting to see research carried out in order to understand the role and perception of pain and management (such as cough assistance) for individuals like me 1,2 . Personally, I cannot say that pain specifically or the use of cough assist have affected my QoL as a whole.…”