Palliative Care for Severely Affected Patients with Multiple Sclerosis: When and Why? Results of a Delphi Survey of Health Care Professionals
Journal of Palliative Medicine
To cite this article:
Strupp Julia, Romotzky Vanessa, Galushko Maren, Golla Heidrun, and Voltz Raymond. Journal of Palliative Medicine. October 2014, 17(10): 1128-1136. doi:10.1089/jpm.2013.0667.
Published in Volume: 17 Issue 10: October 10, 2014
Online Ahead of Print: July 28, 2014
Online Ahead of Print: July 28, 2014
Author information
Julia Strupp, PhD,1,* Vanessa Romotzky, Dipl Paed,1,* Maren Galushko, PhD,1 Heidrun Golla, MD,1 and Raymond Voltz, MD1,2,3
1Department of Palliative Medicine, University Hospital of Cologne, Cologne, Germany.
2Center for Integrated Oncology, Cologne/Bonn, Germany.
3Clinical Trials Center, Cologne, Germany.
Accepted May 14, 2014
ABSTRACT
Background:
Patients severely affected by multiple sclerosis (MS) present with
complex symptoms and needs requiring an interdisciplinary care approach.
Objective: Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes.
Design: A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively.
Setting/Subjects: Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively.
Results: Consensus was reached among all respondents (100%) defining the term “severely affected”: 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]>6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) “very important.” The workshop documented the paucity of home visits and specialized MS care in nursing homes.
Objective: Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes.
Design: A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively.
Setting/Subjects: Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively.
Results: Consensus was reached among all respondents (100%) defining the term “severely affected”: 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]>6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) “very important.” The workshop documented the paucity of home visits and specialized MS care in nursing homes.
Conclusions:
Our results clearly identified specific areas in which palliative care
will likely prove to be a valuable asset in the treatment course of MS.
This information should serve clinicians, indicating when to consider
palliative care services and help further reduce or eliminate
uncertainty about how palliative care can be integrated in the course of
MS.
Users who read this article also read
 |
|
|
|
No comments:
Post a Comment