Papers by Vanessa Fanning
Multiple Sclerosis Journal, 2020

Health Expectations, Jun 24, 2020
BackgroundPeople with multiple sclerosis (MS) have varied experiences and approaches to self‐mana... more BackgroundPeople with multiple sclerosis (MS) have varied experiences and approaches to self‐management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research.MethodsA meta‐synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge‐users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease.ResultsOf 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health‐care sector; and work, social and family life).ConclusionThe majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.

Health Expectations, Feb 4, 2022
BACKGROUND Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome... more BACKGROUND Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. METHODS Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. RESULTS Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and reconstitution of personhood for both the person with MS and the people they live with. CONCLUSION People with MS are embedded in relational social networks of partners, family and friends, which are fundamental in the support of their personhood; the people who live with them are 'co-constituents of the patient's identity' assisting them to make sense of their world and self in times of disruption due to illness. Support services and health care professionals caring for people with MS are currently very much patient-centred; young people in particular report that their roles are elided in the health system's interaction with a parent with MS. There is a need to look beyond the person with MS and recognize the relational network of people who surround them and broaden their focus to encompass this network. PATIENT AND PUBLIC INVOLVEMENT Our research team includes four members with MS and two members with lived experience of living or working with people with MS. A third person (not a team member) who lives with a partner with MS provided feedback on the paper.

Health Expectations, Jul 6, 2021
BackgroundPeople with multiple sclerosis (MS), who are often immunocompromised, require complex c... more BackgroundPeople with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health‐care providers to manage their health.ObjectiveTo elucidate people with MS' experiences of accessing health care during the COVID‐19 pandemic in Australia.DesignA qualitative study involving semi‐structured interviews and thematic analysis.Settings and participantsEight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020.ResultsParticipants were aware that having MS made them more vulnerable to contracting COVID‐19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face‐to‐face consultation. Benefits of telehealth consultations included improved access, convenience and being contact‐free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health‐care routines.Discussion and conclusionPersonal risk assessment and trust in health‐care professionals are determinants of the mode through which people with MS accessed health care during the COVID‐19 pandemic. Telehealth has been a valuable tool to mitigate COVID‐19 transmission through enabling contact‐free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations.Patient or public contributionThis study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers.
Journal of Personalized Medicine, Aug 12, 2021
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY

BMJ Open, Dec 1, 2022
Introduction Australians have substantial out-of-pocket (OOP) health costs compared with other de... more Introduction Australians have substantial out-of-pocket (OOP) health costs compared with other developed nations, even with universal health insurance coverage. This can significantly affect access to care and subsequent wellbeing, especially for priority populations including those on lower incomes or with multimorbidity and chronic illness. While it is known that high OOP healthcare costs may contribute to poorer health outcomes, it is not clear exactly how these expenses are experienced by people with chronic illnesses. Understanding this may provide critical insights into the burden of OOP costs among this population group and may highlight policy gaps. Method and analysis A systematic review of qualitative studies will be conducted using Pubmed, CINAHL Complete (EBSCO), Cochrane Library, PsycINFO (Ovid) and EconLit from date of inception to June 2022. Primary outcomes will include people's experiences of OOP costs such as their preferences, priorities, trade-offs and other decisionmaking considerations. Study selection will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and methodological appraisal of included studies will be assessed using the Critical Appraisal Skills Programme. A narrative synthesis will be conducted for all included studies. Ethics and dissemination Ethics approval was not required given this is a systematic review that does not include human recruitment or participation. The study's findings will be disseminated through conferences and symposia and shared with consumers, policymakers and service providers, and published in a peer-reviewed journal. PROSPERO registration number CRD42022337538.
Health Expectations, May 20, 2022
various dialects of the language, the Occitan culture and the history of the region. His love of ... more various dialects of the language, the Occitan culture and the history of the region. His love of the region, its languages and its traditions are a great inspiration. Special thanks are due to my French friends in the village of Saint Martial, Arlette, Anne-Marie and Daniel who were always ready to sit down and talk about regional expressions and the nuances of local usage in French and dialect and who provided me with many insights; and to Jo who read my translation with an enthusiastic and critical eye. Most importantly I would like to thank my husband Bruce for his constant support and encouragement which took many forms. I could not have completed the project without him.

BMJ Open
IntroductionAustralians have substantial out-of-pocket (OOP) health costs compared with other dev... more IntroductionAustralians have substantial out-of-pocket (OOP) health costs compared with other developed nations, even with universal health insurance coverage. This can significantly affect access to care and subsequent well-being, especially for priority populations including those on lower incomes or with multimorbidity and chronic illness. While it is known that high OOP healthcare costs may contribute to poorer health outcomes, it is not clear exactly how these expenses are experienced by people with chronic illnesses. Understanding this may provide critical insights into the burden of OOP costs among this population group and may highlight policy gaps.Method and analysisA systematic review of qualitative studies will be conducted using Pubmed, CINAHL Complete (EBSCO), Cochrane Library, PsycINFO (Ovid) and EconLit from date of inception to June 2022. Primary outcomes will include people’s experiences of OOP costs such as their preferences, priorities, trade-offs and other decisi...

Introduction. The terms "precision medicine" and "personalised medicine" have... more Introduction. The terms "precision medicine" and "personalised medicine" have become key terms in health-related research, and in science-related public communication. However, the application of these two concepts and their interpretation in various disciplines are heterogeneous, which also affects research translation and public awareness. This leads to confusion regarding the use and distinction of the two concepts. Methods and analysis. Our study aims at using Rodger's concept analysis method to systematically examine and distinguish the current understanding of the concepts "precision medicine" and "personalised medicine" in clinical medicine, biomedicine (incorporating genomics and bioinformatics), health services research; physics, chemistry, engineering; machine learning, and artificial intelligence, and to identify their respective attributes (clusters of characteristics) and surrogate and related terms. We will analyse similariti...

Multiple Sclerosis Journal, 2021
Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect... more Background: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. ...

Health expectations : an international journal of public participation in health care and health policy, 2022
BACKGROUND Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome... more BACKGROUND Multiple sclerosis (MS) is a chronic serious condition of uncertain course and outcome. There is relatively little literature on the experiences of people who live with a person with MS. They inhabit a locus of care that spans caring for (a relational act) and caring about (a moral stance, addressing fairness, compassion and justice) the person with MS. METHODS Using the theoretical lens of personhood, we undertook a scoping review and meta-synthesis of the qualitative literature on the experiences of people who live with a person with MS, focusing on the nature of, and constraints upon, caring. RESULTS Of 330 articles, 49 were included in the review. We identified five themes. One of these-seeking information and support-reflects the political economy of care. Two are concerned with the moral domain of care: caring as labour and living with uncertainty. The final two themes-changing identities and adapting to life with a person with MS-point to the negotiation and recons...

Journal of Personalized Medicine, 2021
There is enormous variation in the manifestations of disease experienced by people with multiple ... more There is enormous variation in the manifestations of disease experienced by people with multiple sclerosis (PwMS). While this variation makes personalized medicine an attractive goal, there are many challenges to be overcome before this opportunity can be realized. Personalized medicine often focuses on targeted therapies and detailed monitoring, but we also need to recognize that there will be variation in acceptance of these approaches by different PwMS. In other words, deep personalization of medicine will encompass targeted therapy, precision monitoring, tailored to variation in personal attitudes to these transformations in health care. In order to meet the promise of personalized medicine for MS, understanding the experiences of PwMS is necessary both to aid in the uptake of personalized medicine, and to ensure that personalized approaches to monitoring disease and treatment provide a net benefit to PwMS rather than placing additional burdens and stressors on them. Here, we de...
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Papers by Vanessa Fanning