Abstract
Long-term neurological conditions (LTNCs) often cause debilitating symptoms. Better understanding of symptom dimensions in LTNCs is needed to support health professionals and improve care. This can be achieved by exploring the factor structure of a standardised measure of symptoms in LTNC patients. The symptom subscale of the Integrated Palliative Outcome Scale for LTNCs (IPOS Neuro-S24) comprises 24 items measuring symptom severity. Descriptive statistics and psychometric properties of the scale were assessed, followed by differential item functioning (DIF), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Data from N = 238 patients were analysed. The mean IPOS Neuro S-24 score was 27.0 (possible range 0–96) and floor effects were found for 21 items. The scale had good internal consistency (Cronbach’s alpha = 0.77). Weak evidence of DIF was found for nine items. All but one item (falls) loaded onto four factors with loadings > 0.3. The factors represented four clinically meaningful symptom dimensions: fatigue, motor symptoms, oral problems and non-motor symptoms. We identified a reliable four-factor structure of symptom experience in LTNC patients. The results suggest that symptom dimensions are common across LTNCs. The IPOS Neuro S-24 is an appropriate tool to measure symptoms in LTNC patients, which may improve care.
Highlights
Long-term neurological conditions (LTNCs), including multiple sclerosis (MS), idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and motor neurone disease (MND), are non-communicable, progressive diseases that can affect patients’ physical capability, sensory function, cognition, behaviour, communication and emotions[1]
Patients lacking mental capacity (N = 39) were missing data as their data were collected via a carer and only patient-reported data were used in analysis, these data were missing at random (MAR)
The descriptive statistics for the 67 excluded patients were comparable to the analytical sample: mean age = 67 years, 51% female, median years since diagnosis = 13, the majority were married, living with spouse, primary/secondary school educated and of white ethnicity
Summary
Long-term neurological conditions (LTNCs), including multiple sclerosis (MS), idiopathic Parkinson’s disease (IPD), multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and motor neurone disease (MND), are non-communicable, progressive diseases that can affect patients’ physical capability, sensory function, cognition, behaviour, communication and emotions[1]. The psychometric development of a validated tool may include factor analysis, a statistical approach to identifying the internal structure of a measure by exploring the relatedness of individual items. Assessing the factor structure of symptoms may contribute to the development of evidence-based diagnostic tools[9]. This could benefit both health professionals and patients, as care can be focused on managing groups of symptoms, rather than inefficiently treating single symptoms[10]. A previous factor analysis of eight symptoms in LTNC patients[11] aimed to validate a shortened palliative care outcome measure for this patient group, but did not explore the factor structure of the whole spectrum of symptoms and identify clinically meaningful symptom clusters. No other studies have explored the factor structure of symptoms across LTNCs
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