key: cord-0024157-8l1y325l
authors: Price, Eluned; Lucas, Robyn; Lane, Jo
title: Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals
date: 2021-09-04
journal: Health Expect
DOI: 10.1111/hex.13348
sha: 6c02a18571fc985e46bcd51f204794f29233b65d
doc_id: 24157
cord_uid: 8l1y325l

BACKGROUND: Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative condition of the central nervous system that commonly strikes in young adulthood and has no cure. Many people living with MS (PwMS) will have significant contact with a range of healthcare professionals (HCPs). To achieve optimal health outcomes in MS, it is important to understand factors that contribute to positive or negative healthcare experiences. Previous studies have shown that PwMS want clear communication and in‐depth relationships with their HCPs. However, many studies have lacked qualitative feedback from HCPs. OBJECTIVE: This study aimed to investigate healthcare experiences of PwMS and HCPs and identify areas that are working well and areas that could be improved. METHODS: Semistructured interviews with 15 PwMS and 11 HCPs (seven neurologists, four MS nurses) from across Australia were conducted. Interviews were transcribed verbatim and analysed thematically. RESULTS: Both PwMS and HCPs valued clear communication, recognized uncertainties associated with MS and highlighted the importance of rapport. PwMS focused on decision‐making, understanding roles and expectations, self‐directed management and their needs for support. HCPs discussed issues related to medical management, providing hope and reassurance, barriers to healthcare and multidisciplinary care. CONCLUSION: Greater transparency and communication, particularly around the approach to care and the roles played by HCPs, is likely to enhance healthcare experiences and contribute to better health outcomes for PwMS. PUBLIC CONTRIBUTION: PwMS and HCPs volunteered to be interviewed, and PwMS assisted with the development of interview content and structure.

Multiple sclerosis (MS) is a chronic neurodegenerative condition involving demyelination in the central nervous system that impacts over 25,000 Australians. 1, 2 The experience of MS is unique to each person living with this condition; however, it typically involves impairment in cognitive, motor and sensory functioning. In Australia, the typical healthcare journey begins with consultation with a primary care physician following the onset of symptoms. For some people who will go on to develop MS, these initial symptoms can be vague, and there will be recurrent visits to the primary care physician before referral for specialist care and investigation. For others, symptom onset will be dramatic, for example loss of vision in one eye, leading to an initial contact with the healthcare system through the emergency department, followed by rapid referral to a specialist neurologist. The latter initiates care, further detailed investigations, for example MRI, and typically maintains the ongoing neurological care of the patient, with variable involvement of the primary care physician. In Australia, subsidized drug treatment can only be provided to people living with MS (PwMS) once the diagnosis of MS is confirmed, typically following a second bout of neurological symptoms. Specialist MS nurses are available in some major cities to provide support to neurologists and PwMS.

There are many factors that contribute to improved outcomes in healthcare including patient education and partnership between a physician and a patient. 3 As MS is a chronic condition that requires ongoing interaction with the healthcare system, it is particularly important to understand the factors that contribute to optimal health outcomes. For example, recent evidence indicates that, for PwMS, previous healthcare experiences heavily influence future decisions to seek care for MS-related matters. 4 Further, although previous studies highlight an overall level of satisfaction with care, they reveal a greater need for informative communication during the early stages of diagnosis and management, as well as greater input from the PwMS in decision-making. 5, 6 It is not uncommon in MS to have a significant delay between the onset of symptoms and diagnosis of MS, and inadequate provision of support and information during this time is reported. 7 While treatment and understanding of MS have improved over the past few decades, it is unclear whether this has led to objective improvements in the diagnostic experience for PwMS. 7, 8 A recent meta-synthesis of qualitative research into the overall experiences of PwMS showed that many individuals described lack of information and personalized advice at the time of diagnosis. 9 These previous studies have heavily focused on the experiences of PwMS.

There is limited literature outlining the experiences of healthcare professionals (HCPs) in MS healthcare, with these studies highlighting more clinical concerns, such as treatment choices, management of side effects and alignment of care with the personal goals and preferences of PwMS. 10, 11 However, concern has been raised regarding discrepancies between PwMS and HCPs in expectations of care. 12 A systematic review of studies into HCP-PwMS interactions found that PwMS often felt uninformed following appointments, and felt a lack of depth in the relationship with their HCPs. 13 

This was an explorative qualitative study using purposive sampling to interview 15 PwMS and 11 HCPs specializing in MS.

We recruited participants from among those who had been previously involved in research with the research team, using personal invitations and circulation of study flyers. This study was approved by the researchers' university Human Research Ethics Committee, and written consent was obtained from all participants. To be eligible for the study, PwMS had to be over 18 years of age with a diagnosis of MS. HCPs who had extensive experience working with PwMS were invited to participate in the study, including neurologists and MS nurses. It was expected that saturation (i.e., no new insights obtained in the interviews) would be reached within 10-12 interviews if the purposive samples were relatively homogeneous. 14 Before the interview, PwMS completed a 10-min online questionnaire using Qualtrics 15 to collect demographic and clinical characteristics.

The first four interviews were conducted face to face and the remainder by telephone due to local Government regulations during the SARS-CoV-2 pandemic. The interview questions were based on a top-down (theoretical) approach using findings from current research literature and a bottom-up (inductive) approach consulting with PwMS regarding their experiences of healthcare to correspond with the thematic analysis methodology. 16 The research team's consumer 

Online questionnaires were downloaded into Microsoft Excel; we used descriptive statistics to describe the participant populations.

Interviews were audio-recorded, transcribed verbatim and analysed to identify themes. Analysis involved three coders from diverse backgrounds, including personal experience with MS, experience as an HCP and experience in coding qualitative data. Interviews were independently coded, with each coder identifying, analysing and interpreting the patterned response or themes and meaning in the data, 16 with any coding discrepancies resolved via consensus. One coder used NVivo 12 software 17 to collate the data and a second coder cross-checked this coding.

Fifteen PwMS (Table 1 ) and 11 HCPs (seven neurologists and four MS nurses) were interviewed. PwMS were located in the Australian Capital Territory (ACT) and Victoria, and the HCPs were from the ACT, New South Wales, Victoria and Western Australia.

Following coding, three themes were common to both PwMS and HCPs: communication, uncertainty and relationship and rapport. Four unique themes were described by PwMS: decision-making, roles and expectations, self-directed management and support, and four unique themes were described by HCPs: medical management, multidisciplinary approach, barriers and access and hope and reassurance ( Table 2 ). Medicine is becoming more and more complicated, all of us only know a little slice of it, but we know that slice really well, and we're incredibly interested in optimising the outcomes for that slice. To overcome this, some PwMS said they changed their expectations and sought support elsewhere, whilst others said that they felt disappointed when their HCPs did not meet their expectations and needs.

Modern management of MS presents many challenges for HCPs and demands consideration of many factors, as indicated in Figure 1 .

Treating neurologists need to consider uncertain drug efficacy and disease trajectory, 10 as well as potential side effects and financial impact, 11 and this is often in the context of time constraints and limited resources. This study highlighted that HCPs' perspectives and experiences of healthcare were guided by factors that were often not transparent to PwMS. HCPs aimed to provide hope and reassurance whilst focusing on delivering healthcare that is both evidence-based and individualized, to achieve optimal health outcomes. Neurologists also considered factors associated with a complex health system (e.g., Discrepancies between PwMS and HCPs in perspectives and expectations of care have been documented previously. 6, 12 The need for improved communication is consistent with the existing literature, 13 as well as the need for adequate empathy, support and person-centred care. 19 Therefore, clear communication of factors that impact the healthcare experience in MS, as shown in Figure 1 , may provide a more positive experience for both PwMS and HCPs and contribute to optimal health outcomes. Figure 1 

One major strength of the study was the semi-structured interview format, allowing PwMS to openly share their diverse perspectives and experiences of healthcare. Participants were from various regions across Australia, providing greater generalizability. However, not all regions were included, and differences between urban and rural areas could be examined further. The study was limited by a small sample size and thus findings were not stratified according to demographic data. Additionally, the perceptions of PwMS who have minimal interaction with HCPs may not have been captured comprehensively in this study. It should be noted that healthcare experiences of PwMS may vary greatly depending on the year in which they were diagnosed with MS, and the study population was fairly heterogeneous regarding time of diagnosis. In the past 10 years, there has been a significant increase in the number of DMTs available. Therefore, it is possible that PwMS who were diagnosed more recently were more hopeful and had a less negative experience than those diagnosed before this time. These interactions may improve healthcare experiences of both PwMS and HCPs, leading to better engagement with treatment and better overall health outcomes.

Health economic impact of multiple sclerosis in Australia in 2017 (An analysis of MS Research Australia's platform-The Australian MS Longitudinal Study (AMSLS)

Multiple sclerosis: pathology, diagnosis and treatments

Improving health outcomes through patient education and partnerships with patients

Is it worth it?: The experiences of persons with multiple sclerosis as they access health care to manage their condition

Primary care satisfaction among adults with physical disabilities: the role of patient-provider communication

The state of multiple sclerosis: current insight into the patient/health care provider relationship, treatment challenges, and satisfaction

Experiences of diagnosis and treatment among people with multiple sclerosis

Communicating the diagnosis of multiple sclerosis-a qualitative study

It struck at the heart of who I thought I was': a meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Factors influencing multiple sclerosis disease-modifying treatment prescribing decisions in the United Kingdom: a qualitative interview study

Challenges in multiple sclerosis care: results from an international mixedmethods study

Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group

Understanding health care professional-patient interactions in multiple sclerosis: a systematic review and thematic synthesis

How many interviews are enough? An experiment with data saturation and variabilty

UT: Qualtrics

Using thematic analysis in psychology

NVivo (released in

Disease progression in multiple sclerosis: a literature review exploring patient perspectives

A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy

Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development

Initial user testing of decision aids for multiple sclerosis disease-modifying therapies

Experiences of healthcare for people living with multiple sclerosis and their healthcare professionals

The authors would like to acknowledge the significant contributions made by Dr Vanessa Fanning, for assisting with the interview manuscript, Ms Carmel Poyser, for assisting in coding and interview transcription, and Ms Jessica Lovell for assisting with interview transcription. This study was funded by and has been delivered in partnership with Our Health in Our Hands (OHIOH), a strategic initiative of the Australian National University, which aims to transform healthcare by developing new personalized health technologies and solutions in collaboration with others including people living with MS, clinicians and healthcare providers.

The authors declare that there are no conflicts of interest.

Data will be made available from the corresponding author upon reasonable request.

http://orcid.org/0000-0001-8872-5855Robyn Lucas https://orcid.org/0000-0003-2736-3541Jo Lane https://orcid.org/0000-0002-2518-1050