Validation Chronic Acquired Polyneuropathy – Patient Reported Index (CAP-PRI) in Russia for CIDP patients

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Abstract

Background. Chronic inflammatory demyelinating polyneuropathy (CIDP) is the most common immune‑mediated polyneuropathy. CIDP is characterized by a long‑term progressive or recurrent course of the disease and the development of neurological deficits and disability, it is important to assess the quality of life of patients. The paper presents the results of the first and second steps of validation of the Chronic acquired polyneuropathy – Patient Reported Index (CAP‑PRI) questionnaire designed to assess quality of life in patients with immune‑mediated polyneuropathy.
Aim. To develop the Russian version of the CAP‑PRI questionnaire.
Materials and methods. 85 patients with CIDP (according to EAN / PNS 2021 criteria) were enrolled. At the first step we conducted linguocultural validation according to the standard protocol. Two Russian‑speaking professional translators in the field of medicine performed direct translation of the original English‑language questionnaire, and the back translation was performed by native speakers with a medical background. At the second step the psychometric parameters were evaluated.
Results. The developed Russian version of the CAP‑PRI questionnaire demonstrated a high level of reliability, validity and sensitivity.
Conclusion. The Russian version of the CAP‑PRI questionnaire is recommended for clinical practice and research. In addition, the relationship between improved quality of life and the reduction of neurological deficits, disability and fatigue (as assessed by the IRODS, NIS and FSS scales) has been shown.

About the authors

N. A. Suponeva

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0003-3956-6362

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

E. A. Melnik

Research Center of Neurology

Author for correspondence.
Email: evmel88@gmail.com
ORCID iD: 0000-0001-5436-836X

Evgeniya Aleksandrovna Melnik

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

A. S. Arestova

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0002-9890-3552

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

D. G. Yusupova

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0002-5826-9112

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

A. A. Zimin

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0002-9226-2870

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

A. B. Zaytsev

I.M. Sechenov First Moscow State Medical University, Ministry of Health of Russia

Email: fake@neicon.ru
ORCID iD: 0000-0003-3774-3070

Build. 2, 8 Trubetskaya St., Moscow 119991

Russian Federation

N. V. Polekhina

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0002-4364-5947

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

G. A. Gatina

Dagestan State Medical University, Ministry of Health of Russia

Email: fake@neicon.ru
ORCID iD: 0000-0002-8717-7305

1 Ploshchad Lenina, Makhachkala 367000

Russian Federation

Nisha Mohan Ramchandani

Kenyatta National Hospital

Email: fake@neicon.ru
ORCID iD: 0000-0003-4680-9297

Hospital Road, Upper Hill, Nairobi 00202

Kenya

Pratish Bundhun

Victoria Hospital

Email: fake@neicon.ru
ORCID iD: 0000-0001-9129-7118

Candos, Quatre Bornes 7235

Mauritius

E. A. Golovneva

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0003-3307-8472

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

E. V. Gnedovskaya

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0001-6026-3388

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

D. A. Grishina

Research Center of Neurology

Email: fake@neicon.ru
ORCID iD: 0000-0002-7924-3405

80 Volokolamskoe Shosse, Моscow 125367

Russian Federation

References

  1. Broers M.C., Bunschoten C., Nieboer D. et al. Incidence and prevalence of chronic inflammatory demyelinating polyradiculoneuropathy: A systematic review and meta-analysis. Neuroepidemiology 2019;52(3–4):161–72. doi: 10.1159/000494291
  2. Van den Bergh P.Y.K., Doorn P.A., Hadden R.D.M. et al. European Academy of Neurology/Peripheral Nerve Society guideline on diagnosis and treatment of chronic inflammatory demyelinating polyradiculoneuropathy: Report of a joint Task Force – Second revision. J Periph Nerv Syst 2021;26(3):242–68. doi: 10.1111/jns.12455
  3. Mathey E.K., Park S.B., Hughes R.A.C. et al. Chronic inflammatory demyelinating polyradiculoneuropathy: from pathology to phenotype. J Neurol Neurosurg Psychiatry 2015;86(9):973–85. doi: 10.1136/jnnp-2014-309697
  4. Briani C., Cocito D., Campagnolo M. et al. Update on therapy of chronic immune-mediated neuropathies. Neurol Sci 2021. doi: 10.1007/s10072-020-04998-y
  5. Vuytsik N.B., Suponeva N.A., Chechetkin A.O. et al. Ultrasound neuroimaging in chronic inflammatory demyelinating polyneuropathy. Annaly klinichesoy i eksperimentalnoy nevrologii = Annals of Clinical and Experimental Neurology 2014;8(3):9–13. (In Russ.)]. doi: 10.17816/psaic177
  6. Dyck P.J., Zimmerman B.R., Vilen T.H. et al. Nerve glucose, fructose, sorbitol, myo-inositol, and fiber degeneration and regeneration in diabetic neuropathy. New Engl J Med 1988;319(9):542–8. doi: 10.1056/nejm198809013190904
  7. Medical Research Council. Aids to the examination of the peripheral nervous system. HM Stationery Office, 1976. P. 70.
  8. Merkies I.S.J., Schmitz P.I.M., van der Meche F.G.A. et al. Inflammatory Neuropathy Cause and Treatment (INCAT) group. Clinimetric evaluation of a new overall disability scale in immune mediated polyneuropathies. J Neurol Neurosurg Psychiatry 2002;72(5):596–601. DOI: 10.113/jnnp.72.5.596
  9. Ware J.E., Sherbourne C.D. The MOS 36-Item short-form health survey. Med Care 1992;30(6):473–83.
  10. Herdman M., Gudex C., Lloyd A., et al. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res 2011;20(10):1727–36. doi: 10.1007/s11136-011-9903-x32
  11. Gwathmey K.G., Conaway M.R., Sadjadi R. et al. Construction and validation of the chronic acquired polyneuropathy patient-reported index (CAP-PRI): A disease-specific, health-related quality-of-life instrument. Muscle Nerve 2016;54(1):9–17. doi: 10.1002/mus.24985
  12. Gwathmey K.G., Sadjadi R., Horton W. et al. Validation of a simple disease-specific, quality-of-life measure for diabetic polyneuropathy. Neurology 2018;90(23):e2034–e2041. doi: 10.1212/wnl.0000000000005643
  13. Bjelica B., Peric S., Gwathmey K. et al. Chronic Acquired Polyneuropathy Patient Reported Index (CAPPRI) in chronic inflammatory demyelinating polyradiculoneuropathy. J Periph Nerv Syst 2019;24(3):247–52. doi: 10.1111/jns.12329
  14. Sadjadi R., Peric S., Gwathmey K. et al. Psychometric longitudinal evaluation of the Chronic Acquired Polyneuropathy Patient Reported Index (CAPPRI) in patients with Chronic Inflammatory Demyelinating Polyneuropathy. Muscle Nerve 2021;63(1):84–8. doi: 10.1002/mus.27089
  15. Vu T., Anthony N., Alsina R. et al. Impact of subcutaneous immunoglobulin on quality of life in patients with chronic inflammatory demyelinating polyneuropathy previously treated with intravenous immunoglobulin. Muscle Nerve. 2021;63(3):1–6. doi: 10.1002/mus.27345
  16. Novik A.A., Ionova T.I. The manual for the quality-of-life evaluation in medicine. Moscow: ZAO “Olma Media Grupp”, 2007. 320 p. (In Russ.)
  17. Guillemin F., Bombardier C., Beaton D. Recommendations for the cross-cultural adaptation of health status measures. J Clin Epidemiol 1993;46(12):1417–32. doi: 10.1016/0895-4356(93)90142-n
  18. Kadam P., Bhalerao S. Sample size calculation. Int J Ayurveda Res 2010;1(1):55. doi: 10.4103/0974-7788.59946
  19. Nunnaly J.C. Psychometric Theory. New York: Tata McGraw-Hill Education, 1994. P. 152.

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Copyright (c) 2022 Suponeva N.A., Melnik E.A., Arestova A.S., Yusupova D.G., Zimin A.A., Zaytsev A.B., Polekhina N.V., Gatina G.A., Ramchandani N., Bundhun P., Golovneva E.A., Gnedovskaya E.V., Grishina D.A.

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