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Understanding and Managing Pain for Thalidomide Survivors

NCT06398132 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 73

Last updated 2025-03-24

No results posted yet for this study

Summary

Aim: To explore the pain experience of Thalidomide survivors and propose an effective pain management service, tailored to meet the unique needs of this population.

Background: Approximately 400 thalidomide survivors live in the UK, who are also beneficiaries of the Thalidomide Trust. Such individuals have been mainly born with upper or lower limb problems, but some also experience sight, hearing, or speaking difficulties. Most tend to experience additional problems, acquired after birth, including persistent muscle or joint pain as well as mental health problems. Such conditions may reduce the quality of life of thalidomide survivors, who face significant difficulties in accessing healthcare services or receiving effective treatment. Specialist services such as pain management are not easily available to thalidomide survivors. Providers' lack of understanding or flexibility to treat populations with unique needs, and geographical or financial barriers have been considered as possible reasons.

Methods: This is a cross-sectional observational study. Thalidomide survivors, who are also beneficiaries of the Thalidomide Trust, will be offered a questionnaire booklet to fill, featuring questionnaires aiming to explore their pain experience (0-10 Pain Numerical Rating Scale, Central Aspects of Pain, painDETECT, Widespread Pain Index), mental health (Hospital Anxiety and Depression Scale), beliefs (Pain Catastrophizing, Tampa Scale of Kinesiophobia), quality of life (EQ-5D-5L), disability (Health Assessment Questionnaire), sleep (Athens Insomnia Scale), and medicines use (Pain Medication Attitude Questionnaire). Linear regression modelling will explore the factors that best explain the overall pain experience of Thalidomide Survivors.

Impact: The research will inform how thalidomide survivors might gain access to an evidence-based pain management service designed specifically for them, which will improve their quality of life.

Conditions

  • Pain, Chronic
  • Pain

Interventions

OTHER

Usual Care

Usual Care includes among others, over-the-counter or prescribed painkillers, treatment modalities such as physiotherapy and/or psychotherapy, privately accessed or via the National Health Service, exercise, etc.

Sponsors & Collaborators

  • The Thalidomide Trust

    collaborator UNKNOWN

  • University of Nottingham

    lead OTHER

Principal Investigators

  • Vasileios Georgopoulos, PhD · University of Nottingham

  • David A. Walsh, PhD · University of Nottingham

  • Daniel F. McWilliams, PhD · University of Nottingham

  • Fionna Moffatt, PhD · University of Nottingham

  • Holly Blake, PhD · University of Nottingham

Eligibility

Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2024-05-15
Primary Completion
2025-02-02
Completion
2025-02-02

Countries

  • United Kingdom

Study Locations

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Entities

Diseases

Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT06398132 on ClinicalTrials.gov