Neurological
Patient-specific understanding of the rapid-built total inflammatory disability scale
In patients with chronic inflammatory demyelinating polyneuropathy (CIDP), there are large differences in the perception of the importance and understanding of components of the inflammatory Rasch-built Overall Disability Scale (I-RODS). These results were published in the European Journal of Neurology.
Study researchers contacted patients (N = 41) with CIDP by phone to assess their I-RODS score, hesitation, understanding, and perceived importance of the I-RODS components.
The patients had a mean age of 62.4 (standard deviation [SD], 15.3) years, 13 were women, 70.7% had typical CIDP, and the mean raw I-RODS score was 30 of 48 (SD, 11.1).
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A total of 20.8% hesitated to respond to 5 of the 24 I-RODS items. In particular, 24.4% were reluctant to catch a ball, 22% said they could travel by public transport, 17.1% said they could run 1km outdoors, 19.5% said they could bend over to to pick up an object to go to your family doctor.
A quarter of the items were unimportant for at least a third of the respondents, such as dancing (65.9%), catching a ball (61%), traveling through public perspiration (53.7%), running (46.3 %), standing for hours (41.5% and washing dishes (34.1%).
Hesitation and perceived importance were negatively correlated for visiting a family doctor (r, -0.46; P = 0.002) and catching a ball (r, -0.338; P = 0.031).
In the order of their importance, 9 of the 24 items were selected by less than 10% of the participants, especially visiting the family doctor (0%), dancing (4.9%), bowel movements (4.9%), washing dishes (7.3. )%), catch a ball (7.3%) and use public transport (7.3%).
Compared to unimportant tasks, the most important tasks were washing the upper body (52.5%; P <.001), walking outdoors for less than 1 km (50%; P <.001), getting dressed (50%) %; P <. 001), washing the lower body (47.5%; P <.001), avoiding obstacles (47.5%; P <.001) and walking up stairs (40%; P = .004) .
Some of the items asked were confused, with “reading ability” being interpreted as holding a book (47.5%), vision-related (42.5%) or understanding the material (10%). For “being able to shower”, the patients said that this implies that they could shower unaided (61.5%), could shower without adjustments (20.5%) or could shower outside their home (18.0%).
The patient’s response was more influenced by fatigue (53.7%) than by mood (17.1%; P = 0.001). Younger respondents reported tiredness more frequently (mean 57.2 vs 67.3; P = 0.037).
This study may have been limited by its single center design, number of participants, and non-stratification of patients by CIDP subtypes.
These results suggest that patients with CIDP had patient-specific perceptions and understandings of the I-RODS components and could suggest that the device should be evaluated for effectiveness.
Disclosure: Several authors stated links to the pharmaceutical industry. For a full list of the details, see the original article.
reference
White D, Englezou C, Rajabally Y A. Patient Perception of Outcome Measurements in Chronic Inflammatory Demyelinating Polyneuropathy: A Study of the Inflammatory Rasch-built Overall Disability Scale. Eur J Neurol. Published online May 9, 2021. doi: 10.1111 / de.14907