Informing patients with progressive neurological disease of their health status, and their adaptation to the disease

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.

Influence of Age of Onset on Huntington’s Disease Phenotype

“…This burden of anxiety and lack of social support could become magnified once HD manifests. Specifically, lack of social support is associated with decreased quality of life for patients with neurodegenerative diseases [26]. Additionally, given their young age of onset and the genetic nature of HD, these participants are more likely to be caretakers for living family members affected by HD, which has been shown to cause high rates of family dysfunction, psychological stress, and significantly affect quality of life [27][28][29].…”

Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives

“…Participants often felt that the information provided and the delivery of this information were inadequate, especially regarding disease transitions and progression. 44 Such a lack of disease awareness and understanding could have negative impacts on patients’ family members and caregivers. Indeed, the sufficient provision of information for family members is one of the key unmet needs in the care of patients with chronic conditions.…”

“…Indeed, the sufficient provision of information for family members is one of the key unmet needs in the care of patients with chronic conditions. 44 …”

“…Indeed, the sufficient provision of information for family members is one of the key unmet needs in the care of patients with chronic conditions. 44 Lack of adequate communication by HCPs was the most common recurring theme. As with MS, this theme is reflected in studies of breaking bad news to patients with other potentially life-limiting conditions, revealing room for improvement and providing indications of potentially beneficial ways forward.…”

Coping Styles among People with Parkinson’s Disease: A Three-Year Follow-Up Study

“…A characteristic aspect of living with PD is the unpredictability of the manifestations of the disease and the gradual loss of control over the body [ 10 ]. Common strategies for managing everyday life that are described in the literature include active information seeking [ 6 , 11 ], planning and structuring [ 12 ], trying to have a positive attitude/outlook [ 13 , 14 ] and being physically active [ 15 ] as well as utilizing social support [ 16 ].…”