Response data and questionnaires for PRAGMATIC - Patients' experiences of a suppoRted self-manAGeMent pAThway In breast Cancer

   PRAGMATIC Main Paper: “Patients’ experiences of a suppoRted self-manAGeMent pAThway In breast Cancer (PRAGMATIC): Quality of Life and Service Use Results” These data are csv files of responses from 110 patients together with tables and figures illustraing results. Patients entered  demographic details at baseline and completed five quality of life questionnaires and a service use questionnaire over 5 time points – baseline, 3, 6, 9 and 12 months. The quality of life questionnaires were FACT-B, PRRS, GSE, GHQ-12 and EQ-5D-5L. Patients were offered the option of completing a paper questionnaire booklet or completing online at each time point. You can also view pdfs of the baseline questionnaire booklet and the three-month service use questionnaire.  Purpose: To describe trends and explore factors associated with quality of life (QoL) and psychological morbidity and assess Breast Cancer (BC) health service use over a 12-month period for patients joining the supported self-management (SSM) pathway.  Methods: Participants completed questionnaires at baseline, 3, 6, 9 and 12 months that measured QoL (FACT-B, EQ 5D-5L), self-efficacy (GSE), psychological morbidity (GHQ-12), roles and responsibilities (PRRS) and service use (cost diary).  Results: 99/110 patients completed all timepoints, 32% (35/110) had received chemotherapy. The chemotherapy group had poorer QoL; FACT-B total score mean differences were 8.53 (95% CI: 3.42 to 13.64), 5.38 (95% CI: 0.17 to 10.58) and 8.00 (95% CI: 2.76 to 13.24) at 6, 9 and 12 months, respectively. The odds of psychological morbidity (GHQ12 >4) were 5.5-fold greater for those treated with chemotherapy. Financial and caring burdens (PRRS) were worse for this group (mean difference in change at 9 months 3.25 (95% CI: 0.42 to 6.07). GSE and GHQ-12 scores impacted FACT-B total scores, indicating QoL decline for those with high baseline psychological morbidity. Participants who had chemotherapy or high psychological morbidity or were unable to carry out normal activities and had highest service costs. Over the 12months 68.2% participants phoned/emailed breast care nurses, 53.3% visited a hospital breast clinician.  Conclusion: The SSM pathway was suitable for most patients, but those who had received chemotherapy and/or had heightened psychological morbidity may benefit from closer monitoring and/or supportive interventions. Reduced access due to Covid-19 could have affected service use</p

Imaging Surrogates of Disease Activity in Neuromyelitis Optica Allow Distinction from Multiple Sclerosis

<div><p>Inflammatory demyelinating lesions of the central nervous system are a common feature of both neuromyelitis optica and multiple sclerosis. Despite this similarity, it is evident clinically that the accumulation of disability in patients with neuromyelitis optica is relapse related and that a progressive phase is very uncommon. This poses the question whether there is any pathological evidence of disease activity or neurodegeneration in neuromyelitis optica between relapses. To investigate this we conducted a longitudinal advanced MRI study of the brain and spinal cord in neuromyelitis optica patients, comparing to patients with multiple sclerosis and controls. We found both cross-sectional and longitudinal evidence of diffusely distributed neurodegenerative surrogates in the multiple sclerosis group (including thalamic atrophy, cervical cord atrophy and progressive widespread diffusion and myelin water imaging abnormalities in the normal appearing white matter) but not in those with neuromyelitis optica, where localised abnormalities in the optic radiations of those with severe visual impairment were noted. In addition, between relapses, there were no new silent brain lesions in the neuromyelitis optica group. These findings indicate that global central nervous system neurodegeneration is not a feature of neuromyelitis optica. The work also questions the theory that neurodegeneration in multiple sclerosis is a chronic sequela to prior inflammatory and demyelinating pathology, as this has not been found to be the case in neuromyelitis optica where the lesions are often more destructive.</p></div

Cross-sectional myelin water fraction (MWF) of the normal appearing white matter.

<p>Voxelwise analysis of MWF in the white matter skeleton created with TBSS where significantly lower MWF is shown in red for (A) multiple sclerosis group versus control group, and (B) multiple sclerosis group MWF versus neuromyelitis optica group.</p

Longitudinal volumetric measures.

<p>(A) Percentage change in brain volume over one year in subject groups. (B) Voxelwise within-group analysis found a small significant area of atrophy in the region of the insula cortex within the multiple sclerosis group (shown) but not the neuromyelitis optica or control groups over the course of one year. (C) Change in thalamic volume over one year. NS = not significant, * = significant difference (corrected p< 0.05).</p

Group comparisons of quantitative imaging measures.

<p>Abbreviations:</p><p>ANCOVA: analysis of co-variance</p><p>DTI: diffusion tensor imaging</p><p>MTSCF: Magnetisation transfer contrast normalized by CSF signal</p><p>MWI: myelin water imaging</p><p>NAT: Normal appearing tissue</p><p>NAWM: normal appearing white matter</p><p>NS: not significant</p><p>SD: standard deviation</p><p>*: significant difference (p<0.05).</p><p>Group comparisons of quantitative imaging measures.</p

Cross-sectional fractional anisotropy of the normal appearing white matter.

<p>Voxelwise comparison of fractional anisotropy (FA) within white matter skeletons created with TBSS where significantly lower FA is shown in yellow for (A) neuromyelitis optica group versus control group, (B) multiple sclerosis group versus control group, and (C) multiple sclerosis group versus neuromyelitis optica group.</p

Longitudinal measures of the integrity of the normal appearing white matter.

<p>Voxelwise paired comparison of baseline and one year scans for each subject group showed significant areas within the TBSS white matter skeletons of the multiple sclerosis group of (A) reduction in fractional anisotropy shown in red/yellow, and (B) reduction in myelin water fraction shown in green.</p

Histogram showing the frequency of subjects (x axis) classified into each group by their discriminant function score (y axis).

<p>Histogram showing the frequency of subjects (x axis) classified into each group by their discriminant function score (y axis).</p

Voxel-based morphometry of the multiple sclerosis group compared to controls.

<p>Showed relative atrophy of the thalami and caudate nuclei.</p

Results of the cross-sectional volumetric analyses.

<p>The dots show individual patient results and the bars the group mean. Individual and mean results have not been normalised for age. (A) Whole brain volume normalised for intracranial volume. (B) Thalamic volume normalised for intracranial volume. (C) Cervical spinal cord volume. NS = not significant, * = significant difference (corrected p< 0.05).</p