FV 871. Pediatric Palliative Care of Duchenne Muscular Dystrophy in Germany

2018 ◽  
Author(s):  
Maria Janisch ◽  
Silke Nolte-Buchholtz ◽  
Maja von der Hagen
Keyword(s):  
Palliative Care ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Pediatric Palliative Care

Tasks and interfaces in primary and specialized palliative care for Duchenne muscular dystrophy – A patients’ perspective

2020 ◽  
Vol 30 (12) ◽  
pp. 975-985
Author(s):  
Maria Janisch ◽  
Kristin Boehme ◽  
Simone Thiele ◽  
Annette Bock ◽  
Janbernd Kirschner ◽  
...  
Keyword(s):  
Palliative Care ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Specialized Palliative Care ◽  
Patients Perspective

29 Multi-disciplinary palliative care for men living with duchenne: a qualitative interview study

2018 ◽  
Vol 8 (3) ◽  
pp. 370.3-371
Author(s):  
Sheonad Laidlaw ◽  
Emma Carduff
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Health Care Professionals ◽  
Team Approach ◽  
List Type ◽  
Illness Trajectory ◽  
Diagnosis And Management ◽  
Qualitative Interview Study

BackgroundDuchenne muscular dystrophy (DMD) is an x-linked ultra-rare neuromuscular condition affecting 1 in 3600–6000 live male births.1 Individuals live with an exceptional illness trajectory of prolonged dwindling frailty and high symptom burden.2 While it is recognised that a co-ordinated multidisciplinary team approach may increase the survival of those with DMD and improve their quality of life (QoL)3 adults are receiving less comprehensive and co-ordinated care compared with those in the paediatric service.4AimTo investigate QoL in adults with DMD living in the West of Scotland (WoS).MethodsThe SEIQoL-DW tool was used to assess the five most important elements that contribute to an individual’s QoL – these were then used to guide qualitative interviews with six men in the WoS. A thematic analysis was undertaken.ResultsMen living with DMD in the WoS described living good lives but feel ‘forgotten’ due to perceived gaps in their care: poorly co-ordinated and infrequent health care; lack of multi-disciplinary team input and holistic care; and poor or no access to allied health care professionals for example physiotherapy and psychological support.ConclusionsExisting guidelines rarely seem materialise as person-centred care. There are numerous opportunities to introduce palliative care gently as part of the MDT early in the illness trajectory and continue in a dynamic manner as time elapses and when trigger points arise. Better co-ordinated multi-disciplinary care with the inclusion of a palliative care specialist may be a solution allowing for an early introduction to palliative care and proactive advance care planning.References. Bushby K, et al. Diagnosis and management of duchenne muscular dystrophy part 1: Diagnosis and pharmacological and psychosocial managment. Lancet Neurol2010;9:77–93.. Landfeldt E, et al. The burden of duchenne muscular dystrophy. Neurology2014;83:529–36.. Bushby K, et al. Diagnosis and management of duchenne muscular dystrophy part 2: Implementation of multidisciplinary care. Lancet Neurol2010;9:177–89.. Rodger S, et al. Adult care for duchenne muscular dystrophy in the UK. J Neuro2015;262:629–41.

Palliative care services in families of males with duchenne muscular dystrophy

2011 ◽  
Vol 44 (1) ◽  
pp. 93-101 ◽  
Author(s):  
Rebeca Arias ◽  
Jennifer Andrews ◽  
Shree Pandya ◽  
Kathleen Pettit ◽  
Christina Trout ◽  
...  
Keyword(s):  
Palliative Care ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Care Services ◽  
Palliative Care Services

scholarly journals Palliative care in duchenne muscular dystrophy: A study on parents' understanding

2021 ◽  
Vol 27 (1) ◽  
pp. 146
Author(s):  
PriyaTreesa Thomas ◽  
Arun Sadasivan ◽  
ManjushaG Warrier ◽  
Kiran Polavarapu ◽  
Veeramani Preethish-Kumar ◽  
...  
Keyword(s):  
Palliative Care ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy

scholarly journals Perspectives on Palliative Care Among Duchenne Muscular Dystrophy Patients and Their Families in Singapore

2020 ◽  
Vol 49 (2) ◽  
pp. 72-77
Author(s):  
Sarah Jane Corpuz Tapawan ◽  
Furene SJ Wang ◽  
Ming Wei Lee ◽  
Aaron QH Chua ◽  
Jeremy BY Lin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Support Services ◽  
Ventilatory Support ◽  
Care Services ◽  
Transport Services ◽  
Palliative Care Services

Introduction: With better medical care, patients with Duchenne muscular dystrophy (DMD) now live longer but face more complex medical and social needs. This study described the perceptions of DMD patients and their families of disease-specific palliative care services in Singapore. Materials and Methods: A multicentre, crosssectional study involving DMD patients and their families was carried out. Structured questionnaires were administered to them to collect data on their understanding of palliative care, health services accessed and desired by them and quality of life. Results: A total of 30 pairs of DMD patients and their caregivers responded. Mostpatients were >13 years old (70%) and non-ambulant (86%). Most of them and their families (70%) were also not aware of palliative care and support services that were available to them in Singapore. Additionally, they perceived greater financial assistance and better transport services as resources that could better meet their care needs. The presence of scoliosis and need for ventilatory support were associated with lower quality of life in patients. Conclusion: There is a need to improve awareness and provision of palliative care services for DMD patients in Singapore where discussion of end-of-life care is often considered taboo. Prevention and correction of scoliosis and provision of appropriate ventilatory support may improve quality of life in DMD patients. Key words: Advance care planning, Palliative support services, Quality of life.

Management of severe faecal impaction in an adolescent with Duchenne muscular dystrophy (DMD) receiving palliative care

2015 ◽  
Vol 51 (3) ◽  
pp. 351-352 ◽  
Author(s):  
Julie Jordan-Ely ◽  
Kyla M Dobson ◽  
Shaun Appaduray ◽  
Jenny Hynson ◽  
Andrew J Kornberg ◽  
...  
Keyword(s):  
Palliative Care ◽  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Faecal Impaction
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