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. 2022 May 12;12(5):e060451.
doi: 10.1136/bmjopen-2021-060451.

Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers

Isabel Vandenbogaerde  1   2   3 , Rose Miranda  4   2   3 , Jan L De Bleecker  5 , Emma Carduff  6 , Agnes van der Heide  7 , Lieve Van den Block  4   2   3 , Luc Deliens  4   2   3 , Aline De Vleminck  4   2   3
Affiliations

Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers

Isabel Vandenbogaerde et al. BMJ Open. .

Abstract

Introduction: Amyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time.

Methods and analysis: A qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants.

Ethics and dissemination: This protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group's (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

Keywords: adult palliative care; motor neurone disease; qualitative research.

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Conflict of interest statement

Competing interests: None declared.

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References

    1. Talbott EO, Malek AM, Lacomis D. The epidemiology of amyotrophic lateral sclerosis. Vol. 138. 1st edn. Elsevier B.V, 2016. - PubMed
    1. Greenaway LP, Martin NH, Lawrence V, et al. . Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives. J Neurol 2015;262:1002–13. 10.1007/s00415-015-7665-z - DOI - PubMed
    1. Hogden A, Foley G, Henderson R, et al. . Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach. J Multidiscip Healthc 2017;10:205–15. 10.2147/JMDH.S134992 - DOI - PMC - PubMed
    1. Mitchell JD, Borasio GD. Amyotrophic lateral sclerosis. Lancet 2007;369:2031–41. 10.1016/S0140-6736(07)60944-1 - DOI - PubMed
    1. Kiernan MC, Vucic S, Cheah BC, et al. . Amyotrophic lateral sclerosis. Lancet 2011;377:942–55. 10.1016/S0140-6736(10)61156-7 - DOI - PubMed

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