Abstract
BackgroundFew data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported).ObjectiveTo identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs.MethodData were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized.ResultsBetween October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community.ConclusionsUnmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers.
Highlights
In Western countries multiple sclerosis (MS) is second only to trauma as cause of chronic neurological disability in young adults
Needs differed across Italy with requirements for information and access to services highest in the South
All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care
Summary
In Western countries multiple sclerosis (MS) is second only to trauma as cause of chronic neurological disability in young adults. Around 15% of MS sufferers have a progressive course from the outset (primary progressive MS); a further 35% develop progressive disease after a variable period with relapsing-remitting course (secondary progressive MS) [1]. New therapies can attenuate disease course, people with primary or secondary progressive MS lack effective treatment options [2]. Highly disabled patients may live many years [7], enduring co-morbidities and complications such as aspiration pneumonia, urinary tract infections, complications of falls and fractures, and sepsis secondary to pressure ulcers, all of which are major causes of death [8]. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported)
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