Commentary by Dr. Lorna Fraser
Feature Article: Friedman, D., Linnemann, R. W., Altstein, L. L., Georgiopoulos, A. M., Islam, S., Bach, K. T., St John, A., Fracchia, M. S., Neuringer, I., Lapey, A., Sicilian, L., Moskowitz, S. M., &Yonker, L. M. (2019). Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis. Pediatric Pulmonology.
Other Articles References: Cystic Fibrosis strength in numbers. Annual report 2017
Hui, D., De La Cruz, M., Mori, M. et al. Concepts and definitions for “supportive care,” “best supportive care,” “palliative care,” and “hospice care” in the published literature, dictionaries, and textbooks. Supportive Care in Cancer (2013) 21: 659.
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Whenever we discuss the population of children who could potentially benefit from the input of palliative care services the question over whether children with Cystic Fibrosis should be included. Surely they don’t need palliative care services, they are living much longer these days. Indeed the most recent figures from the UK show a predicted median age of survival of 47.0 years (44.8-48.2) but the median age at death was 31 years, therefore 38% of deaths in CF occurred in the age range up to 25 years and may well have benefited from paediatric palliative care services.
Hence I was interested in the article by Friedman et al ‘The effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis’. In this study they aimed to assess the effectiveness of a primary palliative care intervention, delivered by CF specialists. This intervention included a structured interview assessing symptom burden, mental health and quality of life. There were several supportive services which could be accessed by the participants which included; acupuncture, CBT, stress management visits, psychiatric consultation, palliative care consultation, yoga instruction, occupational therapy, physical therapy and a symptom focused visit from the CF care team.
47 participants from paediatric and adult age ranges were enrolled into this study. Most elected to have CBT or acupuncture. Of particular note no participants opted for a specialist palliative care referral. Despite being badged as a pilot study the authors did show a significant reduction in the depressive scale and symptom burden scale.
It was unfortunate that this study did not have a more robust design with a control group and randomisation to give more certainty of the findings, but hopefully that is the next stage of this programme of research.
I was left thinking about key definitions, given that none of these participants were referred to specialist palliative care, yet they had received a palliative intervention. What is palliative care? Supportive care terminology was used throughout this paper, is that different to generalist or primary palliative care? There has of course been a long running discussion that has been ongoing within oncology for many years; what is the difference between supportive and palliative care?
I am afraid I am not clear on the key differences but with my epidemiology head on this reinforces that we need to at least define how we use the terminology if consensus is too much to hope for?