There is large variation in perceptions about the importance and understanding of Inflammatory Rasch-built Overall Disability Scale (I-RODS) components among patients with chronic inflammatory demyelinating polyneuropathy (CIDP). These findings were published in the European Journal of Neurology.
Study researchers contacted patients (N=41) with CIDP by telephone in order to assess their I-RODS score, hesitancy, understanding, and perceived importance of the I-RODS components.
Patients had a mean age of 62.4 (standard deviation [SD], 15.3) years, 13 were women, 70.7% had typical CIDP, and mean raw I-RODS score was 30 out of 48 (SD, 11.1).
A total of 20.8% were hesitant to respond to 5 of the 24 I-RODS items. Specifically, 24.4% were hesitant to say they could catch a ball, 22% to travel by public transport, 17.1% to say they could walk outdoors for 1 km, 19.5% to say they could bend to pick up an item, and 19.5% to go to their general practitioner.
A quarter of the items were unimportant to at least a third of respondents, such as dancing (65.9%), catching a ball (61%), traveling via public transpiration (53.7%), running (46.3%), standing for hours (41.5%), and doing the dishes (34.1%).
Hesitation and perceived importance were negatively correlated for going to see a general practitioner (r, -0.46; P =.002) and catching a ball (r, -0.338; P =.031).
In order of importance, 9 of the 24 items were selected by less than 10% of participants, specifically, visiting a general practitioner (0%), dancing (4.9%), moving a chair (4.9%), doing the dishes (7.3%), catching a ball (7.3%), and using public transportation (7.3%).
Compared with unimportant tasks, the most important tasks were washing upper body (52.5%; P <.001), walking outdoors for less than 1 km (50%; P <.001), dressing upper body (50%; P <.001), washing lower body (47.5%; P <.001), avoiding obstacles (47.5%; P <.001), and walking 1 flight of stairs (40%; P =.004).
There was confusion about some of the queried items, in which ‘ability to read’ was interpreted as holding a book (47.5%), to be vision-related (42.5%), or understanding of the material (10%). For ‘being able to take a shower’ patients thought this implied they could shower without assistance (61.5%), could shower without adaptations (20.5%), or could shower outside their home (18.0%).
Patient responses were more affected by fatigue (53.7%) than mood (17.1%; P =.001). Fatigue was more frequently reported by younger respondents (mean, 57.2 vs 67.3; P =.037).
This study may have been limited by its single center design, number of participants, and by not stratifying patients on the basis of CIDP subtypes.
These findings suggested there was patient-specific perceptions and understanding of the I-RODS components among patients with CIDP and may indicate that the instrument should be reassessed for efficacy.
Disclosure: Multiple authors declared affiliations with the pharmaceutical industry. Please refer to the original article for a full list of disclosures.
White D, Englezou C, Rajabally Y A. Patient perceptions of outcome measures 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/ene.14907