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Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale.

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.

SUBMITTER: Wilson R

PROVIDER: S-EPMC6428819 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale.

Wilson Rebecca R Hepgul Nilay N Saha Romi A RA Higginson Irene J IJ Gao Wei W

Scientific reports 20190321 1

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 scal ...[more]

PMID: 30899063

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Project description:ImportancePalliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking.ObjectiveTo determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs.Design, setting, and participantsMulticenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019.InterventionsPatients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174).Main outcomes and measuresPrimary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat.ResultsA total of 350 patients (mean [SD] age 67 [12] years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers.Conclusions and relevanceIn this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted.Trial registrationisrctn.org Identifier: ISRCTN18337380.

Project description:BACKGROUND:People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity. AIM:To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care. DESIGN:Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to ?8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death ?6, 5-3 and 2-0 months). Linear mixed models were calculated. SETTING/PARTICIPANTS:A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included. RESULTS:In prospective analyses, quality of life, functioning and symptoms-except nausea/vomiting-remained generally stable over time. In retrospective analyses, patients 2-0 months before death reported significantly lower quality of life and physical functioning scores than those 5-3 months before death, who in turn scored lower than those ?6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5-3 to 2-0 months before death. Nausea/vomiting only increased when comparing those ?6 months before death with those 2-0 months before death. CONCLUSION:While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death.

Dataset Information

Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale.

Publications

Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale.

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