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Movement disorders
Original research
Prevalence and burden of pain across the entire spectrum of Huntington’s disease
  1. Gregory P Sprenger1,2,
  2. Erik W van Zwet3,
  3. Hannah S Bakels1,
  4. Wilco P Achterberg4,5,
  5. Raymund A Roos1,
  6. Susanne T de Bot1
  1. 1Department of Neurology, Leiden University Medical Center, Leiden, The Netherlands
  2. 2Huntington Center, Amstelring, Amsterdam, The Netherlands
  3. 3Department of Biomedical Data Sciences, Leiden University Medical Center, Leiden, The Netherlands
  4. 4Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands
  5. 5Huntington Center overduin, Topaz, Leiden, The Netherlands
  1. Correspondence to Gregory P Sprenger, Neurology, Leiden Universitair Medisch Centrum, Leiden 2333, The Netherlands; gsprenger{at}amstelring.nl; g.p.sprenger{at}lumc.nl

Abstract

Background Pain is an important symptom in Huntington’s disease (HD), however, not systematically studied and understood. The objective of the current study is to assess the prevalence of pain, pain interference in daily activities, painful conditions, analgesic use and the severity of the pain burden across different disease stages and ‘Age at symptom Onset’ groups. Additionally, the association between pain and disease burden was investigated.

Methods A cross-sectional analysis was conducted within two large data sets, which included different types of pain scales. Multivariable logistic regression analyses and analyses of variance were performed to compare the pain levels with those in the general population. The analyses were adjusted for sex and age. Locally Estimated Scatterplot Smoothing was used to test the association between pain and the HD pathology score: a measure of disease burden.

Results The mean prevalence of pain in the HD population was 40% and for pain interference around 35% in both data sets. Patients in the early, middle and late stage of HD experience more pain burden compared with what is reported in patients with chronic pain (p<0.01). A positive and significant association was demonstrated between pain and disease burden. Patients in late stage HD with pain use significantly less analgesics compared with the general population (5% vs 13%, respectively (p<0.01)).

Conclusions Pain is a prevalent and important symptom in HD. Severe pain burden in the HD population is present and positively associated with disease burden. Risk for undertreatment with analgesics is nevertheless present. Awareness of pain in HD needs to be increased, both clinically and scientifically.

  • MOVEMENT DISORDERS
  • PAIN

Data availability statement

Data are available upon reasonable request. The data that support the findings of this study are available on request. For the ENROLL-HD study, please sent direct inquiries to info@chdifoundation.org with the words ‘ENROLL-HD PDS’ in the subject line and for the RDS see: https://www.euro-hd.net/html/projects/proposals/scipro. The data are not publicly available due to privacy or ethical restrictions.

https://doi.org/10.1136/jnnp-2023-332992

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    Data availability statement

    Data are available upon reasonable request. The data that support the findings of this study are available on request. For the ENROLL-HD study, please sent direct inquiries to info@chdifoundation.org with the words ‘ENROLL-HD PDS’ in the subject line and for the RDS see: https://www.euro-hd.net/html/projects/proposals/scipro. The data are not publicly available due to privacy or ethical restrictions.

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    Footnotes

    • Contributors GPS conceived the study and drafted the manuscript. EWvZ//HSB/WPA/RAR/STdB contributed to the conception of study and drafted parts of the manuscript. EWvZ verified the analytical methods and analysis. STdB/WPA/RAR encouraged GPS for studying pain in Huntington’s disease and supervised the findings of this work. STdB acted as guarantor. All authors discussed the results and contributed to the final manuscript.

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests STdB: Leiden University Medical Center receives grants from the European Huntington’s Disease Network (EHDN) and Cure HD Initiative (CHDI), participates in an EU Horizon 2020 project: Innovative Medicines Initiative (IMI) 2 (IDEA_FAST), and participates in clinical trials sponsored by PRILENIA, PTC Therapeutics, WAVE and VICO Therapeutics. The aforementioned sponsors had no role in the design, execution, interpretation or writing of this current study. RAR: Member DSMB uniQure 130 study, member DSMB Enroll-HD, Research advisor MIJZO Care centre. The other authors have nothing to disclose.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.