A paper has just been published (1)– Effect of short-term integrated palliative care on patient-reported outcomes among patients severely affected with long-term neurological conditions:
- This paper presents the results of a pragmatic phase 3, multicentre, randomised clinical trial of the clinical and cost effectiveness of short-term integrated palliative care for people with long term neurological conditions
- The short-term intervention lasted for 6 to 8 weeks after referral and focused on a comprehensive assessment, personalised care planning, case management, care co-ordination and advice to the existing care providers.
- 350 patients and 229 caregivers were randomised across 7 centres, with multiple sclerosis being the commonest diagnosis
- There were no statistically significant differences found for the IPOSNeuro-S8 scores or other secondary outcomes, apart from a small reduction in symptom burden at 12 weeks
- There were no differences in hospitalisation or deaths in the groups
- The SIPC group did have a reduction in health costs compared to the controls
- Qualitative interviews showed that the service was seen positively by participants, particularly helping in building resilience, attending to function and deficits and empowering caregivers.
This clinical trial did not show great benefits, in terms of symptom management or quality of life, but was appreciated by both patients and families. However, this may have been related to the heterogeneity of the patients, as not all neurological diseases will have the same issues, and differences in the care provided across the 7 centres. The IPOSNeuro-S8 may not have captured the symptoms of all patients and showed floor effects.
Other studies looking at the effectiveness of palliative care intervention for people with neurological disease have been limited. In particular short-term interventions, in a limited way, have been shown to have only small effects, although they have been much appreciated by patients and families.
The effectiveness of palliative care has been difficult to assess in other disease groups. In cancer there is limited evidence of the reduction in symptoms but early palliative care for lung cancer patients improved quality of life and mood and increased survival. Home specialist palliative care services have been shown to reduce hospitalisation, reduced symptom burden and increases the chance if dying at home (2).
This study used a short-term intervention and for people with long-term disease, such as neurological disease, there may be need for longer insolvent and a more integrated approach. An RCT of a palliative team approach, assessing and supporting patients for 12 weeks, did show reduced symptom an and improved quality of life (3). This longer-term approach to patient and family support may be necessary for these patients. This may be provided by a specialist palliative acre team or incorporated with in the multidisciplinary team approach within neurology.
- The trail showed that a short-term palliative care intervention did improve the care of patients and families
- The study did not show an effect on symptoms or quality of life but was appreciated by patients and families
- Further research into the most appropriate model for palliative care provision for patients with neurological disease is needed
1.Gao W, Wilson R, Hepgul N, Yi, D, Evans C, Bajwah S et al. – Effect of short-term integrated palliative care on patient-reported outcomes among patients severely affected with long-term neurological conditions. JAMA Network Open 2020; 3 (8): e 2015061. Doi: 10.1001/jamanetworkopen.2020.15061
2.Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev 2013; (6):CD0077760. Published 29013 Jun 6. Doi: 10.1002/14651858.CD007760.pub2
3. Veronese S, Gallo G, Valle A, Cugno C, Chio A, Calvo A, Cavalla P, Zibetti M, Rivoiro C, Oliver DJ. Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: Ne-PAL, a pilot randomized controlled study. BMJ Supp Pall Care 2017; 7: 164-172.