‘You are just left to get on with it’: qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis

Abstract

ObjectivesAlthough the transition to secondary progressive multiple sclerosis (SPMS) is known to be a period of uncertainty for clinicians, who may find progressive disease challenging to objectively identify, little research has explored the experiences of patients and carers specifically during this transition period. Our objective was to explore what patients and their carers understand about their disease stage and describe their experiences and perspectives on the transition to SPMS.DesignSemistructured qualitative interviews and subsequent validation focus groups were analysed using inductive thematic analysis.SettingSouth East Wales, UK.Participants20 patients with MS and 13 carers were interviewed. Eight patients and two carers participated in focus groups.ResultsFour main themes around disease progression were identified. ‘Realisation’ describes how patients came to understand they had SPMS while ‘reaction’ describes their response to this realisation. The ‘realities’ of living with SPMS, including dealing with the healthcare system during this period, were described along with ‘future challenges’ envisaged by patients and carers.ConclusionsAwareness that the transition to SPMS has occurred, and subsequent emotional reactions and coping strategies, varied widely between patients and their carers. The process of diagnosing the transition was often not transparent and some individuals wanted information to help them understand what the transition to SPMS meant for them.

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

“…As identified in Davies et al . (), relational continuity improved navigation and access, and provided psychological reassurance for a condition which may be highly anxiety‐provoking.…”

“…, Wilkinson & das Nair , Davies et al . ). Historically, services for MS have been provided in hospital‐based specialist clinics, and correspondingly research has focussed on patients' experiences of secondary care and the role of neurologists and MS Specialist Nurses (SNs).…”

Quality of Working Life of cancer survivors: associations with health- and work-related variables

“…However, when assessing the content of these items, the health-related problems might also be relevant for employees with other chronic diseases. For instance, fatigue is indicated as one of the most unpleasant problems among patients with rheumatoid arthritis [27], and uncertainty about the future is also experienced by patients with multiple sclerosis (MS) [28]. Workers with a chronic health condition (e.g., musculoskeletal conditions) also experienced employment difficulties, such as reduced work ability [29].…”

Clinical effectiveness and cost-effectiveness of beta-interferon and glatiramer acetate for treating multiple sclerosis: systematic review and economic evaluation

“…112 The transition from RRMS to SPMS is also a challenging time for patients, as this requires adjusting to new 'realities' and preparing for forthcoming challenges in a declining trajectory. 113 A recent qualitative systematic review emphasises the importance of support from health-care providers and an accessible health-care system. 114 A comprehensive care plan including patient and carer support alongside therapeutics is described as key for successful management of MS. 115 …”