Analysis of an adult Duchenne muscular dystrophy population

Parker, Amanda; Robb, Stephanie; Chambers, J.; Davidson, A C; Evans, Kathleen; O'Dowd, JK; Williams, Amber; Howard, Robin S.

doi:10.1093/qjmed/hci113

Cited by 65 publications

(60 citation statements)

References 32 publications

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“…[R3] 9 But on its own, all of the men said that the conversation had been limited and overly medicalised and they did not view these exchanges as tantamount to a conversation about end of life. Conversations about resuscitation were regarded as important for the reasons stated above but only a small part of the picture.…”

Section: What End Of Life Conversations Have Men Had?mentioning

confidence: 99%

“…5 The literature around end of life care in neuromuscular disorders (NMD) is not extensive. In one retrospective case note review of 24 men and one symptomatic female carrier referred to an adult neuromuscular clinic over a 7-year period, nine patients died during the observation period [9]. The paper noted that 'patients and their families were aware of disease progression and usually understood the natural history of the condition.…”

Section: Introductionmentioning

confidence: 99%

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Men with Duchenne muscular dystrophy and end of life planning

Abbott

Prescott²,

Forbes

et al. 2017

Neuromuscular Disorders

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General rightsThis document is made available in accordance with publisher policies. Please cite only the published version using the reference above. Full terms of use are available: http://www.bristol.ac.uk/pure/about/ebr-terms The men in the study wanted to be given proactive cues that they could bring up topics such as death and dying and wanted to have these conversations with clinicians who combined expert knowledge about the condition as well as good listening skills. Topics of interest to participants included likely nature and place of death; practical planning for funerals and wills; and sources of information and support. Emotional or psychological support to think about end of life was not routinely offered and participants found it very difficult to discuss these issues with family members. The study suggests that more could be done to encourage clinicians, men with Duchenne, family members and the wider NMD community to pay attention to end of life planning issues and the associated need for emotional support and high quality interactions between patients and clinicians.

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Section: What End Of Life Conversations Have Men Had?mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Men with Duchenne muscular dystrophy and end of life planning

Abbott

Prescott²,

Forbes

et al. 2017

Neuromuscular Disorders

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show abstract

“…The average age at death is around 19 years (Bushby et al, 2010), although life expectancy is extending with improved healthcare practices (Abbott & Carpenter, 2009). However, the continual loss of mobility and function leads to serious health problems including respiratory and cardiac deterioration, and curvature of the spine (scoliosis), which is treated with spinal surgery (Parker et al, 2005).…”

Section: Introductionmentioning

confidence: 99%

In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy

Skyrme¹

2016

Child Care in Practice

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Semi-structured interviews were conducted with boys and young men who have Duchenne muscular dystrophy (DMD), a severe, degenerative condition that only affects boys. The main focus of the interviews was to explore how the participants thought they might make a decision to take part in medical research. To better understand this, aspects of the participants' lives were discussed; they talked about the impact of discomfort and declining mobility, and the social issues they experienced, such as discrimination and a sense of difference. Their observations indicate that living with a degenerative condition has physical and social impacts, and that there are limited opportunities for them to talk about these issues. It was also apparent that parents are key figures who provide care for their child, often in the absence of comprehensive support services. Raising these matters privileges the experiences of severely disabled children and young people, who live with increasing muscle weakness, disablist attitudes and intensifying support needs. Their contributions build on understandings of life with a degenerative condition, highlighting the intersection of impairment and social issues in their lived experience.

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“…35 patients from the cohort are still alive (aged 22-31 years); 18 died (aged [15][16][17][18][19][20][21][22][23][24][25][26][27][28][29][30]. Patients were ventilated by NIV (29/53) or IV (33/53).…”

Section: Causes Of Death and Ages Of Survival In Dmd What Is The Carmentioning

confidence: 99%

“…With the increase in age, many of them experience gastrointestinal symptoms which several studies have confirmed [12,[27][28][29][30].…”

Section: Gastrointestinal Problems In Dmdmentioning

confidence: 99%

206th ENMC International Workshop: Care for a novel group of patients – adults with Duchenne muscular dystrophy Naarden, The Netherlands, 23–25 May 2014

Rahbek¹,

Steffensen²,

Bushby

et al. 2015

Neuromuscular Disorders

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Analysis of an adult Duchenne muscular dystrophy population

Cited by 65 publications

References 32 publications

Men with Duchenne muscular dystrophy and end of life planning

Men with Duchenne muscular dystrophy and end of life planning

In and On their Own Terms: Children and Young People's Accounts of Life with Duchenne Muscular Dystrophy

206th ENMC International Workshop: Care for a novel group of patients – adults with Duchenne muscular dystrophy Naarden, The Netherlands, 23–25 May 2014

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