Patients' experiences of natalizumab treatment in a home environment: a qualitative study

Objective: This study's objective was to understand the experiences and perspectives of people with multiple sclerosis who received infusions of natalizumab at home instead of the tertiary hospital day unit. Background: Continually returning once every four weeks to an out-patient department to complete an intravenous infusion can be taxing for chronic disease patients. In Australia, acute care patients may be offered hospital in the home service. In-home services are delivered by highly qualified, trained nurses following the infusion protocols similar to that of the hospital. However, this service is not yet offered for chronic disease patients, such as those with relapsing remitting multiple sclerosis. Study design and methods: An exploratory-descriptive study that incorporated face-to-face audio-recorded interviews of people with multiple sclerosis was undertaken as part of a larger study that trialled delivery of natalizumab at home instead of the hospital day unit. The interviews were conducted at the Ambulatory Care Day Unit of a hospital following a period of three natalizumab infusions in participants' homes. Twelve people with multiple sclerosis (two males and 10 females) aged between 18-56 years participated in this study. Results: A main theme of 'patient-centredness' that describes the positive contribution of having patients at the centre of care when delivering home infusions emerged. This encompassed three subthemes: 'in the comfort of their own home', 'convenience for patients and their families' and 'saving time and money'. Patient-centred care was an important part of the model of care because it provided flexibility for the participants in managing their home and work-life commitments. Discussion: Although home infusion therapy requires a healthcare team approach, this study's findings demonstrated that delivering patient-centred home infusions provided satisfaction for people with multiple sclerosis. This enabled natalizumab to be delivered at patients' preferred time in the convenience of their own home. Conclusion: If models of care are to be truly patient-centred, the convenience of the location of the delivery of safe treatment must be a consideration into the future design of services for those with long term health issues such as multiple sclerosis. Implications for research, policy, and practice: Patients should play a role in the planning of their care and infusion nurses should be flexible in negotiating and delivering appropriate care. Future research could consider the experiences of the home infusion team.