ArticleBMC neurology2019
Informing patients with progressive neurological disease of their health status, and their adaptation to the disease.
Article in BMC neurology, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
6 citing papers in PubMed.
- Spiritual Care Perspectives of Elderly Individuals with Parkinson's Disease and Formal Caregivers: A Qualitative Study in Turkish Nursing Homes.Journal of religion and health · 2024Article
- Intertwined like a double helix: A meta-synthesis of the qualitative literature examining the experiences of living with someone with multiple sclerosis.Health expectations : an international journal of public participation in health care and health policy · 2022Review
- Are interpersonal communication skills adequately taught at postgraduate specialist level in South Africa? The neurology experience.South African family practice : official journal of the South African Academy of Family Practice/Primary Care · 2021Article
- Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives.Patient preference and adherence · 2021Review
- Coping Styles among People with Parkinson's Disease: A Three-Year Follow-Up Study.Behavioral sciences (Basel, Switzerland) · 2020Article
- Influence of Age of Onset on Huntington's Disease Phenotype.Tremor and other hyperkinetic movements (New York, N.Y.) · 2020Observational
Corrections and comments
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Authors and funding
2 authors.
Funding
Abstract
backgroundProgressive neurological diseases, such as multiple sclerosis, Parkinson's disease, Huntington's disease, significantly interfere with patients' lives, and those of their families. The aim of the research was to establish whether the extent of the information on patients' health conditions, and the way patients learn this information from doctors affect their adaptation to chronic and progressive diseases.
methodsQualitative methodology was used for a total of 52 participants (patients with progressive neurological diseases, their family members, and health and social workers). Data were collected using individual, in-depth interviews and focus groups. Analysis of data for interpretation, conceptualization, and re-integration was performed by open, axial, and selective coding.
resultsIt was determined that adequate information about patients' health status, and the use of coping strategies are related to their adaptation to their disease, and consequently, to their quality of life. The participants often considered the extent of the information provided, and the way they were informed to be inadequate. Receiving the diagnosis, the progression of the disease, and the end of life were found to be the most burdensome.
conclusionOur results show that Czech neurologist should develop better communication skills, particularly for informing patients with progressive neurological diseases. Open communication, emotional support, and support in selecting effective coping strategies can help patients adapt more readily to their disease, and improve their quality of life.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.