Developing a Model of Care for Home Infusions of Natalizumab for People With Multiple Sclerosis

Schultz, Tim; Thomas, Anne; Georgiou, Paul; Cusack, Lynette; Juaton, Mahasen; Simon, Lorraine; Naidoo, Kimesh; Webb, Kevin; Karnon, Jonathan; Ravindran, Janakan

doi:10.1097/nan.0000000000000343

Cited by 10 publications

(8 citation statements)

References 40 publications

(70 reference statements)

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“…This paper presents the qualitative component of a larger study on the safety and clinical effectiveness, acceptability and cost effectiveness of home infusions of natalizumab for people with multiple sclerosis. 20,21 An exploratory, descriptive approach to explore the patients' experiences of receiving treatment at home and to generate a descriptive understanding of this phenomenon was used. A descriptive understanding in the qualitative study is the exploration of human experiences to either investigate new ideas or increase knowledge of a phenomena.…”

Section: Methodsmentioning

confidence: 99%

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

Juaton¹,

Cussack²,

Schultz³

2020

AJAN

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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 exploratorydescriptive 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 patientcentred, 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 AUTHORS MAHASEN JUATON RN BSN M. Nursing, M. Clinical Science candidate 1

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Section: Methodsmentioning

confidence: 99%

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

Juaton¹,

Cussack²,

Schultz³

2020

AJAN

Self Cite

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“…The finding of greater “Convenience,” as a subscale of Satisfaction, for home infusions is not surprising, given that home care was specifically designed to be patient‐centred. 26 This quantitative finding was strongly reflected in the qualitative interviews of 12 patients, in which “convenience for patients and their families’ was one of three subthemes under the main theme of “patient‐centredness” and contributed significantly to the acceptability of home infusions. 24 Convenience provided patients with autonomy and control over their medical appointments and lifestyle, and freed up time and capacity for family and work.…”

Section: Discussionmentioning

confidence: 97%

“…Prioritising the delivery of patient‐centred care safely at home, the model of care was responsive to patient needs and prioritised the nurse–patient therapeutic relationship, while incorporating relevant National Standards and factors such as handing over patients between settings and protection of cold chain using medical couriers. 26 As per usual care protocols in the clinic, before every infusion patients in both the clinic and home infusion settings completed a pre‐infusion questionnaire to assess for new symptoms which may suggest PML. In the presence of new PML symptoms, no infusions occur until the patient has been medically reviewed and cleared of concern for PML.…”

Section: Methodsmentioning

confidence: 99%

Home infusions of natalizumab for people with multiple sclerosis: a pilot randomised crossover trial

Schultz

Thomas²,

Georgiou

et al. 2021

Ann Clin Transl Neurol

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Objective The delivery of healthcare at home has expanded to intravenous infusions of monoclonal antibodies. A recently developed model of care for home infusions of natalizumab for people with relapsing‐remitting multiple sclerosis was evaluated. This pilot study of home infusions of natalizumab and usual care (attendance in a hospital out‐patients’ clinic) compared safety, feasibility, patient satisfaction, effectiveness and costs. Methods In this randomised AB/BA crossover trial, 37 adults were randomised to usual care (n = 19) or home infusions (n = 18). After three infusions, patients crossed over to the alternate treatment for another three infusions. Patient safety outcomes and adherence, satisfaction, quality of life, disability and costs were compared. Results No adverse events were recorded from 207 infusions from 35 patients across both home and clinic infusions. There was no difference in adherence (p = 0.71) and infection rates (p = 0.84) between home and clinic settings. Satisfaction with “convenience” of home infusions was significantly greater (p = 0.008) but there were no differences in quality of life measures. Excluding pharmacy, costs were A$74 lower per infusion at home, including A$16 of patients” out‐of‐pocket costs. Interpretation There were no differences in safety and effectiveness between clinic and home infusions of natalizumab. The home infusions were shown to be feasible, more convenient and less expensive than usual care. Larger scale studies are required to verify these preliminary findings, particularly around safety and management of hypersensitivity adverse events in the home setting and for equivalence of clinical outcomes.

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“…The authors created the tool as a comprehensive list of variables known to affect patient satisfaction in outpatient infusion clinics based on data retrieved from the literature review and nurse shadowing. [20][21][22][23][24] This tool enables other clinics the opportunity to review the full list of variables and select the features that they wish to evaluate at their facility.…”

Section: Quality Assessment Toolmentioning

confidence: 99%

Development of a Quality Assessment Tool for Outpatient Infusion Clinics: A Literature Review and Pilot Survey

Shams

Shirvani

et al. 2022

Journal of Infusion Nursing

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This study aimed to develop a quality assessment tool for outpatient infusion clinics, as a lack of literature exists on the subject. The authors conducted a literature review targeting studies since 2016 to identify variables that affect patient satisfaction in outpatient infusion clinics. Due to the limited number of relevant studies found, the authors shadowed 2 infusion clinic nurses to capture additional determinants of outpatient infusion clinic quality. A total of 72 variables relevant to an outpatient infusion quality assessment tool were listed. From this list of variables, a pilot survey was conducted at an outpatient rheumatology infusion clinic to assess patient satisfaction with 16 variables of interest. The pilot survey (N = 43) revealed that patients were relatively dissatisfied with walking to clinics, lack of access to public transit, lack of parking and/or free parking, lack of privacy, and flexible scheduling and/or cancellation policies. These findings demonstrate how the assessment tool may highlight specific areas of concern at an infusion clinic to identify targets for future quality improvement initiatives. Therefore, the tool presented has the potential to improve the quality of care provided to patients attending infusion facilities.

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Developing a Model of Care for Home Infusions of Natalizumab for People With Multiple Sclerosis

Cited by 10 publications

References 40 publications

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

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

Home infusions of natalizumab for people with multiple sclerosis: a pilot randomised crossover trial

Development of a Quality Assessment Tool for Outpatient Infusion Clinics: A Literature Review and Pilot Survey

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