Patients' and caregivers' perception of multidimensional and palliative care in amyotrophic lateral sclerosis - protocol of a German multicentre study.

Amyotrophic lateral sclerosis Caregiver burden Motor neuron disease Palliative care Psychosocial care Quality of care

Journal

Neurological research and practice

ISSN: 2524-3489

Titre abrégé: Neurol Res Pract

Pays: England

ID NLM: 101767802

Informations de publication

Date de publication:
04 Jul 2024

Historique:

received: 25 04 2024

accepted: 22 05 2024

medline: 4 7 2024

pubmed: 4 7 2024

entrez: 3 7 2024

Statut: epublish

Résumé

Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them. This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed. The study is registered at ClinicalTrails.gov; NCT06418646.

Identifiants

DOI: 10.1186/s42466-024-00328-1 PMID: 38961496

pubmed: 38961496

doi: 10.1186/s42466-024-00328-1

pii: 10.1186/s42466-024-00328-1

doi:

Banques de données

ClinicalTrials.gov

['NCT06418646']

Types de publication

Journal Article

Langues

eng

Pagination

Informations de copyright

Références

Rosenbohm, A., Peter, R. S., Erhardt, S., Lulé, D., Rothenbacher, D., Ludolph, A. C., & Nagel, G. (2017). Epidemiology of amyotrophic lateral sclerosis in Southern Germany. J Neurol, 264(4), 749–757.

doi: 10.1007/s00415-017-8413-3 pubmed: 28220290

Chiò, A., Logroscino, G., Traynor, B. J., Collins, J., Simeone, J. C., Goldstein, L. A., & White, L. A. (2013). Global epidemiology of amyotrophic lateral sclerosis: a systematic review of the published literature. Neuroepidemiology, 41(2), 118–130.

doi: 10.1159/000351153 pubmed: 23860588

Oh, J., & Kim, J. A. (2017). Supportive care needs of patients with amyotrophic lateral sclerosis/motor neuron disease and their caregivers: a scoping review. J Clin Nurs, 26(23–24), 4129–4152.

doi: 10.1111/jocn.13945 pubmed: 28681543

van Groenestijn, A. C., Kruitwagen-van Reenen, E. T., Visser-Meily, J. M., van den Berg, L. H., & Schröder, C. D. (2016). Associations between psychological factors and health-related quality of life and global quality of life in patients with ALS: a systematic review. Health Qual Life Outcomes, 14(1), 107.

doi: 10.1186/s12955-016-0507-6 pubmed: 27439463 pmcid: 4955215

Linse, K., Rüger, W., Joos, M., Schmitz-Peiffer, H., Storch, A., & Hermann, A. (2018). Usability of eyetracking computer systems and impact on psychological wellbeing in patients with advanced amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener, 19(3–4), 212–219.

doi: 10.1080/21678421.2017.1392576 pubmed: 29092645

Sethi, A., Everett, E., Mehta, A., Besbris, J., Burke, C., Pedowitz, E., Kilpatrick, M., Foster, L., & Maiser, S. (2022). The role of specialty palliative care for amyotrophic lateral sclerosis. Am J Hosp Palliat Care, 39(7), 865–873.

doi: 10.1177/10499091211049386 pubmed: 34583569

Seeber, A. A., Pols, A. J., Hijdra, A., Grupstra, H. F., Willems, D. L., & de Visser, M. (2019). Advance care planning in progressive neurological diseases: lessons from ALS. BMC Palliat Care, 18(1), 50.

doi: 10.1186/s12904-019-0433-6 pubmed: 31196046 pmcid: 6567602

de Wit, J., Bakker, L. A., van Groenestijn, A. C., van den Berg, L. H., Schröder, C. D., Visser-Meily, J. M., & Beelen, A. (2018). Caregiver burden in amyotrophic lateral sclerosis: a systematic review. Palliat Med, 32(1), 231–245.

doi: 10.1177/0269216317709965 pubmed: 28671483

Ludolph, A., Petri, S., Grosskreutz, J., et al. (2021). Motoneuronenerkrankungen, S1-Leitlinie, in: Deutsche Gesellschaft für Neurologie (Hrsg.), Leitlinien für Diagnostik und Therapie in der Neurologie.

Andersen, P. M., Abrahams, S., Borasio, G. D., de Carvalho, M., Chio, A., Van Damme, P., Hardiman, O., Kollewe, K., Morrison, K. E., Petri, S., et al. (2012). EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force. Eur J Neurol, 19(3), 360–375.

doi: 10.1111/j.1468-1331.2011.03501.x pubmed: 21914052

Martin, S., Trevor-Jones, E., Khan, S., Shaw, K., Marchment, D., Kulka, A., Ellis, C. E., Burman, R., Turner, M. R., Carroll, L., et al. (2017). The benefit of evolving multidisciplinary care in ALS: a diagnostic cohort survival comparison. Amyotroph Lateral Scler Frontotemporal Degener, 18(7–8), 569–575.

doi: 10.1080/21678421.2017.1349151 pubmed: 28719997

Van den Berg, J. P., Kalmijn, S., Lindeman, E., Veldink, J. H., de Visser, M., Van der Graaff, M. M., Wokke, J. H. J., & Van den Berg, L. H. (2005). Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology, 65(8), 1264–1267.

doi: 10.1212/01.wnl.0000180717.29273.12 pubmed: 16247055

Fitch, M. (2008). Supportive care framework. Can Oncol Nurs J Revue Canadienne de Nursing Oncologique, 18, 6–24.

doi: 10.5737/1181912x181614 pubmed: 18512565

Cheng, H. W. B., Chan, K. Y., Judy Chung, Y. K., Choi, C. W., Chan, C. H., Ching Cheng, S., Chan, W. H., Fung, K. S., Wong, K. Y., Iman Chan, O. M., & Wah Man, C. (2017). Supportive & palliative interventions in motor neurone disease: what we know from current literature? Ann Palliat Med, 7(3), 320–331.

doi: 10.21037/apm.2017.10.01 pubmed: 29156920

Brizzi, K., Paganoni, S., Zehm, A., De Marchi, F., & Berry, J. D. (2019). Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center. Muscle Nerve, 60(2), 137–140.

doi: 10.1002/mus.26607 pubmed: 31172537

Veronese, S., Gallo, G., Valle, A., Cugno, C., Chio, A., Calvo, A., Cavalla, P., Zibetti, M., Rivoiro, C., & Oliver, D. J. (2017). Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study. BMJ Support Palliat Care, 7(2), 164–172.

doi: 10.1136/bmjspcare-2014-000788 pubmed: 26182947

Feldstain, A., Bultz, B. D., de Groot, J., Abdul-Razzak, A., Herx, L., Galloway, L., Chary, S., & Sinnarajah, A. (2018). Outcomes from a patient-centered, interprofessional, palliative consult team in oncology. J Natl Compr Canc Netw, 16(6), 719–726.

doi: 10.6004/jnccn.2018.7014 pubmed: 29891523

Linse, K., Aust, E., Günther, R., & Hermann, A. (2022). Caregivers’ view of socio-medical care in the terminal phase of amyotrophic lateral sclerosis-how can we improve holistic care in ALS? J Clin Med, 11(1), 254.

doi: 10.3390/jcm11010254 pubmed: 35011995 pmcid: 8745628

Flemming, K., Turner, V., Bolsher, S., Hulme, B., McHugh, E., & Watt, I. (2020). The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: a qualitative systematic review. Palliat Med, 34(6), 708–730.

doi: 10.1177/0269216320908775 pubmed: 32286157 pmcid: 7444021

Ploner, C.J., Rolke, R., et al. (2023). Palliativmedizinische Versorgung neurologischer Erkrankungen, S2k-Leitlinie, in: Deutsche Gesellschaft für Neurologie (Hrsg.), Leitlinien für Diagnostik und Therapie in der Neurologie.

Freytag, A., Meissner, F., Krause, M., Lehmann, T., Jansky, M. K., Marschall, U., Schmid, A., Schneider, N., Vollmar, H. C., Wedding, U., & Ditscheid, B. (2023). A regional comparison of outcomes quality and costs of general and specialized palliative care in Germany: a claims data analysis. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz, 66(10), 1135–1145.

doi: 10.1007/s00103-023-03746-9 pubmed: 37535086 pmcid: 10539464

Oh, J., Kim, S. H., & Kim, J. A. (2019). Unmet supportive care needs mediate the relationship between functional status and quality of life in patients with amyotrophic lateral sclerosis. Palliat Support Care, 17(6), 650–654.

doi: 10.1017/S1478951519000221 pubmed: 31104645

Greenaway, L. P., Martin, N. H., Lawrence, V., Janssen, A., Al-Chalabi, A., Leigh, P. N., & Goldstein, L. H. (2015). Accepting or declining non-invasive ventilation or gastrostomy in amyotrophic lateral sclerosis: patients’ perspectives. J Neurol, 262(4), 1002–1013.

doi: 10.1007/s00415-015-7665-z pubmed: 25683760

Schischlevskij, P., Cordts, I., Günther, R., Stolte, B., Zeller, D., Schröter, C., Weyen, U., Regensburger, M., Wolf, J., Schneider, I., et al. (2021). Informal Caregiving in Amyotrophic Lateral Sclerosis (ALS): a high caregiver burden and drastic consequences on caregivers’ lives. Brain Sciences, 11(6), 748.

doi: 10.3390/brainsci11060748 pubmed: 34200087 pmcid: 8228206

Deutsche Gesellschaft für Palliativmedizin (2020). Stellungnahme der Neuropalliativen Arbeitsgemeinschaft – eine gemeinsame Kommission der Deutschen Gesellschaft für Neurologie (DGN) und Deutschen Gesellschaft für Palliativmedizin (DGP) zum Gesetzesentwurf „Regulierung der Suizidassistenz in Deutschland“. https://www.bundesgesundheitsministerium.de/fileadmin/Dateien/3_Downloads/Gesetze_und_Verordnungen/Stellungnahmen_WP19/Suizidassistenz/Neuropalliative_Arbeitsgemeinschaft_bf.pdf . Accessed Apr 24 2020.