Baird, Wendy

Beever, Daniel

Brading, Lucy

Coates, Elizabeth

group, HighCALS

Hackney, Gemma

Hartley, Hannah

McDermott, Christopher

Norman, Paul

Quinn, Ann

Stavroulakis, Theocharis

White, David

White, Sean

Repository@Nottingham

CMS-55 Development of theOptiCALS nutritional supportintervention for people withamyotrophic lateral sclerosis

White, S.

Baird, O.

Beever, D.

Brading, L.

Coates, E.

Hackney, G.

Hartley, H.

Quinn, A.

Stavroulakis, T.

White, D.

Norman, P.

McDermott, C.

White Rose Research Online

This is a repository copy of CMS-55 Development of the OptiCALS nutritional support intervention for people with amyotrophic lateral sclerosis.White Rose Research Online URL for this paper:https://eprints.whiterose.ac.uk/183022/Version: Published VersionProceedings Paper:White, S., Baird, O., Beever, D. orcid.org/0000-0001-9063-3677 et al. (9 more authors) (2021) CMS-55 Development of the OptiCALS nutritional support intervention for people with amyotrophic lateral sclerosis. In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 32nd International Symposium on ALS/MND, 07-10 Dec 2021, Virtual conference. Taylor & Francis , pp. 232-233. https://doi.org/10.1080/21678421.2021.1985802© 2021 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group, on behalf of the Research Group on Motor Neuron Diseases and the World Federation of Neurology. Abstract available under the terms of the CC BY License (http://creativecommons.org/licenses/by/4.0).eprints@whiterose.ac.ukhttps://eprints.whiterose.ac.uk/Reuse This article is distributed under the terms of the Creative Commons Attribution (CC BY) licence. This licence allows you to distribute, remix, tweak, and build upon the work, even commercially, as long as you credit the authors for the original work. More information and the full terms of the licence here: https://creativecommons.org/licenses/ Takedown If you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. Full Terms & Conditions of access and use can be found athttps://www.tandfonline.com/action/journalInformation?journalCode=iafd20Amyotrophic Lateral Sclerosis and FrontotemporalDegenerationISSN: (Print) (Online) Journal homepage: https://www.tandfonline.com/loi/iafd20Theme 12 - CLINICAL MANAGEMENT, SUPPORTAND INFORMATIONTo cite this article: (2021) Theme 12 - CLINICAL MANAGEMENT, SUPPORT ANDINFORMATION, Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, 22:sup2,202-233, DOI: 10.1080/21678421.2021.1985802To link to this article:  https://doi.org/10.1080/21678421.2021.1985802© 2021 The Author(s). Published by InformaUK Limited, trading as Taylor & FrancisGroup, on behalf of the Research Groupon Motor Neuron Diseases and the WorldFederation of Neurology.Published online: 17 Nov 2021.Submit your article to this journal Article views: 405View related articles View Crossmark datacombination to predict FVC by evaluating the correlations ofdifferent combinations of ABG parameters (carbon dioxide,pCO2; carbonate, HCO3) and respiratory symptoms (dyspneaand orthopnea were present if ALSFRS-r items 10 and 11were <4, respectively) with FVC. Patients were grouped into3 groups according to ABG values (group 1: normal ABG;group 2: either pCO2 or HCO3 increased; group 3: bothpCO2 and HCO3 increased), to compare clinical featuresbetween patients with and without respiratory symptoms.For a proper comparison, general impairment was evaluatedby ALSFRS-r score without the respiratory domain (ALSFRS-r36) and thus, disease progression rate as DALSFRS36.Results: The best combination to predict FVC was: pCO2 þHCO3þ ALSFRS-r item 10 (R¼ 0.430, p< 0.001). In allgroups patients with dyspnea showed a more severe generalimpairment, a higher disease progression rate and lower FVCvalues. Patients with normal ABG complaining of dyspneahad a reduced survival in comparison with patients withoutdyspnea (0.91 years, IQR 0.46–1.91 vs 1.46 years, IQR0.89–2.29, p¼ 0.002). Cognitive dysfunction did not influencethe complaining of dyspnea (OR 1.009, 95% CI 0.837–1.215,p¼ 0.927). Among all groups patients with normal ABG anddyspnea showed the highest progression rate (fast progres-sors; DALSFRS36¼ 0.86, IQR 0.44–1.25); on the other side,patients not complaining of dyspnea despite having arespiratory failure at ABG had the lowest progression rate(slow progressors; DALSFRS36¼ 0.38, IQR 0.26–0.52).Discussion: The ability of ABG to predict FVC increases byadding the clinical evaluation of dyspnea. At equal ABG val-ues, the complaining of dyspnea is associated with lowerFVC values. The presence of dyspnea differs according to dis-ease phenotypes, being more frequently experienced bypatients with a worse motor impairment and a faster diseaseprogression. A close respiratory monitoring should be set upfor fast progressors complaining of dyspnea to look for aninitial diaphragm weakness and for slow progressors evenwithout dyspnea because they could show a respiratory fail-ure at ABG.Conclusions: Combining ABG with clinical evaluation of dys-pnea improves the ability to assess early respiratory dysfunc-tion in ALS, especially in patients with bulbar orcognitive impairment.mariaclaudia.torrieri@gmail.comReference1. Manera U, Torrieri MC, Moglia C, et al. JNNP. 2020;91(9):999–1000.CMS-55 Development of theOptiCALS nutritional supportintervention for people withamyotrophic lateral sclerosisS. White1, W. Baird2, D. Beever2, L. Brading2, E.Coates2, G. Hackney2, H. Hartley2, A. Quinn3, T.Stavroulakis2, D. White2, P. Norman2 and C.McDermott2; On behalf of the HighCALS group1Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield,United Kingdom; 2University of Sheffield, Sheffield, UnitedKingdom; 3Sheffield Motor Neurone Disease Research AdvisoryGroup, Sheffield, United KingdomBackground: Weight loss is common in people withAmyotrophic Lateral Sclerosis (pwALS) and is a predictor ofpoor outcomes (1). There is encouraging evidence thatincreasing calorie intake may affect disease progression (2).Significant variability has been identified in the provision ofnutritional management of pwALS across the UK (3). There isa need for evidence-based nutrition support interventions toimprove the outcomes of pwALS.Objective: To develop a complex nutrition support interven-tion to support pwALS to increase their calorie intake.Methods and Results: A Portal Development Group (PDG),including academics, healthcare professionals (HCPs), web-developers and public involvement representation weretasked with developing an online portal to provide a person-alised experience to pwALS including presenting individual-ised feedback on calorie intake and weight, and informationon nutrition support strategies.The online nutritional analysis software, myfood24, was inte-grated into the portal, allowing an individuals’ calorie intaketo be presented in real time. Intervention content was basedon systematic reviews and interviews with pwALS, carers andHCPs identifying the key enablers and barriers to increasingcalorie intake in pwALS, using the COM-B model as an over-arching theoretical framework. These were then targeted byspecific behaviour change techniques in the intervention.The intervention was developed through a series of ‘thinkaloud’ interviews with pwALS, carers and HCPs, across sixiterations. The PDG made changes to the interventionbetween each iteration, in response to the feedback received.The online portal was further developed with three rounds ofuser testing, involving pwALS and their carers engaging withthe portal for one month following being trained by HCPs.All participants and HCPs taking part in the user testing wereinterviewed, with their feedback being used to further refinethe portal and training. The final portal, named OptiCALS, isnow being evaluated in a multi-centre randomised con-trolled trial.Discussion: The development of an online complex nutri-tional intervention requires significant time and resources. Aniterative process of ‘develop-test-listen-refine-repeat’ involv-ing effective communication with key stakeholders at allstages, is essential in helping to establish an intervention’sacceptability and feasibility.sean.white@sheffield.ac.uk232 Clinical Management, Support and Information 32nd International Symposium on ALS/MNDAcknowledgementsThis project is funded by the National Institute for Health Research(NIHR) Programme Grants for Applied Research Programme (GrantReference Number RP-PG-1016-20006).References1. Desport J, Preux P, Truong T, et al. Nutritional status is aprognostic factor for survival in ALS patients. Neurology.1999;53:1059–63.2. Dupuis L, Oudart H, Rene F, et al. Evidence for defectiveenergy homeostasis in amyotrophic lateral sclerosis: benefit ofa high-energy diet in a transgenic mouse model. Proc NatlAcad Sci USA. 2004;101(30):11159–64.3. Halliday V, Zarotti N, Coates E, et al. Delivery of nutritionalmanagement services to people with amyotrophic lateralsclerosis (ALS). Amyotroph Lateral Scler FrontotemporalDegener. 2021;1–10.Poster Communications Clinical Management, Support and Information 233

CMS-55 Development of the OptiCALS nutritional support intervention for people with amyotrophic lateral sclerosis

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CMS-55 Development of the OptiCALS nutritional support intervention for people with amyotrophic lateral sclerosis

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