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
