The palliative care needs of people severely affected by neurodegenerative disorders: A qualitative study

Abstract

Specialist palliative care services are often involved in the care of people with progressive neurological disease, in particular amyotrophic lateral sclerosis. However, the particular needs of people with advanced and progressive neurological disease are not well known. A qualitative approach was used, interviewing people with advanced amyotrophic lateral sclerosis/motor neurone disease (ALS/MND), multiple sclerosis (MS), Parkinson's disease (PD), and multiple systems atrophy (MSA) and their family carers to ascertain their particular needs. Focus groups of health and social care professionals allowed a professional view of the needs. People with progressive disease have many, difficult and distressing symptoms: physical, including pain, movement issues, swallowing and speech problems, psychological, feelings of being abandoned and of anxiety and depression, social, of isolation, of being a burden and of financial issues, and spiritual, of loss of hope and the meaning of life as they approach death. These issues could be helped by the development of a palliative care approach and the involvement of a specialist palliative care team, which was supported by patients, carers, and professionals.

Keywords:

• Palliative care
• Needs assessment
• Neurology
• Progressive neurological disease

Acknowledgements

We thank the professionals who actively participated at this study, selecting, and referring the participants and supporting the research team:

At the Department of Neuroscience, University of Torino, Italy: All the members of the ALS Centre; Dr. P. Cavalla and Dr M. Vercellino of the MS Centre; Dr M. Zibetti of the Parkinson's disease and Movement Disorders Centre; At S. Luigi Gonzaga hospital, Orbassano, Italy; Dr A. Bortolotto, Dr S. Malucchi, MS Centre (CRESM); Dr M. Zerbini and dr F. Gamna, pulmonary rehabilitation department; Prof L. Durelli, Dr S. Clerico, Dr A. Tavella, department of neurology.

Disclaimer statements

Contributors SV: first author, principal investigator, interviewer, transcript verbatim, data analysis and manuscript writing. GG: interviewer, transcript verbatim, data analysis. CR: interviewer, transcript verbatim, data analysis. AV: study design, data analysis, manuscript revision. CC: study design, data analysis, manuscript revision. AC patients selection, study design, manuscript revision. AC: patients selection, study design, manuscript revision. DO: study supervisor, data analysis, study design.

Funding None.

Conflicts of interest The authors declare that there are no competing interests.

Ethics approval This study was submitted and approved by two independent Ethics Committees: Molinette Hospital EC (Turin, Italy) and San Luigi hospital EC (Orbassano, Italy) these two ECs guaranteed for the participants (patients and families) and for the professionals involved in the interviews and focus groups. The overall project was then approved by the FARO Foundation (Turin, Italy) Ethics Committee and finally a copy sent for authorization to the University of Kent EC, where the principal investigator (S.V.) was doing his PhD.