The Importance of Connection to Others in QoL in MSA and PSP

Parkinson’s Disease, Sep 2017

Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP) are atypical Parkinsonian disorders with extended morbidity and reduced lifespan, known to have marked and early impact upon quality of life (QoL). This study aimed to address the lack of studies in the literature regarding personal perspectives on QoL in MSA and PSP in both patients and carers. Participants took part in qualitative, in-depth interviews in the North East of England, exploring what impacts their QoL and their experiences of living with these complex conditions. Connection to others was found to be a prevailing theme, encompassing difficulty communicating, social isolation, impact on personal relationships, and stigma. This work is helpful in that it emphasises the personal experiences of these patients and carers, which can provide insights into important areas for clinical service planning and best clinical management of individual patients as well as considerations for future research into QoL in these rare disorders.

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The Importance of Connection to Others in QoL in MSA and PSP

The Importance of Connection to Others in QoL in MSA and PSP Louise Wiblin,1 Rory Durcan,1 Mark Lee,2 and Katie Brittain3 1Clinical Ageing Research Unit, Newcastle University, Newcastle upon Tyne NE4 5PL, UK 2St Benedict’s Hospice for Specialist Palliative Care, St. Benedict’s Way, Sunderland SR2 0NY, UK 3Department of Nursing, Midwifery & Health, Northumbria University, Coach Lane Campus West, Room B128, Newcastle upon Tyne NE7 7XA, UK Correspondence should be addressed to Louise Wiblin; [email protected] Received 29 June 2017; Accepted 17 August 2017; Published 28 September 2017 Academic Editor: Pedro Chaná Copyright © 2017 Louise Wiblin et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Abstract Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP) are atypical Parkinsonian disorders with extended morbidity and reduced lifespan, known to have marked and early impact upon quality of life (QoL). This study aimed to address the lack of studies in the literature regarding personal perspectives on QoL in MSA and PSP in both patients and carers. Participants took part in qualitative, in-depth interviews in the North East of England, exploring what impacts their QoL and their experiences of living with these complex conditions. Connection to others was found to be a prevailing theme, encompassing difficulty communicating, social isolation, impact on personal relationships, and stigma. This work is helpful in that it emphasises the personal experiences of these patients and carers, which can provide insights into important areas for clinical service planning and best clinical management of individual patients as well as considerations for future research into QoL in these rare disorders. 1. Introduction Multiple System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP) are sporadic atypical Parkinsonian disorders (AP) which have poor response to symptomatic treatment, rapid and relentless progression, and reduced life expectancy compared with Parkinson’s disease (PD) [1–3]. As these diseases have an especially aggressive course, in recent years, particular attention has been given to maximise quality of life (QoL) in these conditions, including the introduction of a palliative approach. Research looking at QoL specifically in MSA and PSP is lacking compared with the current body of work on QoL in PD [4–6]. QoL is frequently described as one of the key domains to improve for patients and caregivers in the context of Parkinson’s disease and related disorders and the importance ascribed to QoL is growing [7]. However, a definitive measure which succinctly captures the essence of QoL has not been described; though many tools exist to try and capture QoL using quantitative scales, particularly in Parkinson’s disease and conditions such as MSA and PSP [4, 8, 9]. Qualitative work to explore the “how” and the “why” of QoL and to gain an understanding from the patient and carer perspective has an important place in clinical research, particularly in QoL, as QoL is very much based upon an individual’s perspective and reflection on the self. Qualitative methods are complementary to quantitative work, permitting access to the experiences of patients and carers that “other methods cannot reach” [10]. Qualitative work can act as a basis for developing clinical services or concepts for development of validated scales as well as reinforcing the important principles that lie at the heart of holistic medicine, understanding the patient’s point of view and the diversity of experiences that patients and carers have [11, 12]. This study was carried out as part of a mixed methods project exploring QoL in MSA and PSP and a key finding in the qualitative portion of the investigation was the impact of connection to QoL in patients and in carers. Connection in this analysis refers to the way in which individuals are able to relate to others. This is via different means of communication, relating to people such as partners, family, or friends and how they felt others related to and perceived them. This has clinical implications, as good medical practice is built upon the development of patient and carer-relationships. Any barriers which patients and carers perceive should be identified wherever possible, to allow the best possible communication and rapport, as well as insight into their experience, and hence improve our management. 2. Methods and Ethics This was an exploratory, qualitative project using semistructured interviews. The study was approved by the Leeds-Bradford Research Ethics Committee. Participants were recruited from specialist atypical Parkinsonism clinics across three sites in the North East of England. All participants provided written informed consent. Participants were approached in clinic and provided with detaile (...truncated)


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Louise Wiblin, Rory Durcan, Mark Lee, Katie Brittain. The Importance of Connection to Others in QoL in MSA and PSP, Parkinson’s Disease, 2017, 2017, DOI: 10.1155/2017/5283259