Article Text
Abstract
Background Neurological long-term conditions (LTCs) are associated with decreased psychological well-being. Identifying factors that promote well-being is crucial for improving quality of life. Existing research has identified common well-being factors, but investigating patient/carer perspectives allows for personalised insight into less-recognised factors.
Aims To identify and analyse well-being factors across 5 neurological LTCs - Parkinson’s disease (PD), multiple sclerosis, (MS) motor neuron disease (MND), Huntington’s disease (HD) and epilepsy
Methods Qualititative data was analysed from the NeuroLTC study for 1,490 participants who were asked what factors helped maintain their well-being. A total of 2405 well-being factors, identified from 846 free-text responses were categorised using inductive thematic analysis, and then analysed by condition. PD responses (n=387) were further analysed to determine whether patient gender or disease progression affected well-being factors cited.
Results Social support, exercise, lifestyle and supportive equipment were the most common well-being factors across all conditions. Less-recognised factors (patient attitude, diet, alternative therapies) were also noted. Response frequencies in MND were the most dissimilar to other conditions. In PD, analysis showed the evolution of relevant well-being factors over time, whereas no notable difference was found between factors cited by each gender.
Conclusion This study of patient/carer perspectives on well-being factors, found variation across neuro- logical conditions and disease progression (for PD). This could inform advice given by healthcare profes- sionals to promote patient well-being.
ckipps@nhs.net