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The Living With a Long-Term Condition Study

The Living With a Long-Term Condition Study

Recruiting
18 years and older
All
Phase N/A

Overview

Psychological distress (anxiety and depression) is common in and experienced differently by people living with long-term health conditions (LTCs). Being able to measure whether psychological distress is related to living with a LTC would allow researchers and clinicians to provide interventions specifically tailored to the challenges of living with a LTC and therefore provide the most appropriate support for these patients. Such a measure would also be useful in research to identify the presence of illness-related distress in different patient groups. This project will therefore create a new measure of illness-related distress that has applications for both research and clinical practice. This will involve the psychometric validation of the new illness-related distress measure to test how valid and reliable the measure is.

The aim of the project is to provide initial validation of the Illness Related Distress Scale in a community sample, recruited through online platforms. The objective of the study is to gather initial validity and reliability data for the scale.

Description

Background: see brief summary

Project information:

This study will be conducted online with participants from the UK. A series of standardised questionnaires will be used alongside the new questionnaire.

Participants will be those who self-select to complete our survey by responding to advertisements. The invitation will include a link to the Qualtrics survey which includes the Participant Information Sheet, Eligibility Screening, Consent Form and Baseline Questionnaire.

After completing eligibility screening and consent, participants will complete the baseline questionnaire which will include brief demographics (highest education level, long-term condition diagnoses, ethnicity age and gender), the new measure we are testing (the Illness Related Distress Scale), as well as the Patient Health Questionnaire (PHQ-8), Generalised Anxiety Disorder Scale (GAD-7), the Work and Social Adjustment Scale (WSAS). The baseline questionnaire will only include the Inflammatory Bowel Disease Distress Scale (IBD-DS) and Diabetes Distress Scale (DDS) if participants indicate that they have a diagnosis of the relevant condition.

At 1 week follow-up, participants will be sent a Qualtrics link to complete our 1-week follow-up questionnaire which will include the new Illness-Related Distress Scale only.

Participants

We are aiming to recruit 600-700 participants for the study.

Eligibility

Inclusion Criteria:

  • Over the age of 18
  • Self-reported diagnosis of a Long-Term Condition
  • UK resident
  • Possession of an email address to enable all study procedures
  • Sufficient command of written and spoken English to understand study procedures

Exclusion Criteria:

  • Under the age of 18
  • Not living in the UK
  • No self-reported diagnosis of an LTC
  • Inability to complete questionnaires in English

Study details
    Asthma
    Atrial Fibrillation
    Cancer
    Cerebrovascular Disorders
    Stroke
    CKD
    Copd
    Fibromyalgia
    Pain
    Heart Diseases
    Heart Disease Chronic
    Dementia
    Diabetes
    Epilepsy
    Heart Failure
    High Blood Pressure
    Hypertension
    Hiv
    AIDS
    IBD
    IBS
    Liver Diseases
    Long COVID
    Lupus Erythematosus
    Multiple Sclerosis
    Obesity
    Osteoarthritis
    Arthritis
    Rheumatoid Arthritis
    Osteoporosis
    Parkinson Disease
    Sickle Cell Disease
    Hepatitis
    Endometriosis
    PCOS
    Neurological Disorder
    POTS - Postural Orthostatic Tachycardia Syndrome
    MND (Motor Neurone DIsease)
    Cystic Fibrosis
    Migraine
    Spondylitis
    Celiac Disease
    Hidradenitis Suppurativa
    Eczema
    ME/CFS
    Celiac Disease

NCT06072287

King's College London

7 August 2025

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FAQs

Learn more about clinical trials

What is a clinical trial?

A clinical trial is a study designed to test specific interventions or treatments' effectiveness and safety, paving the way for new, innovative healthcare solutions.

Why should I take part in a clinical trial?

Participating in a clinical trial provides early access to potentially effective treatments and directly contributes to the healthcare advancements that benefit us all.

How long does a clinical trial take place?

The duration of clinical trials varies. Some trials last weeks, some years, depending on the phase and intention of the trial.

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Compensation varies per trial. Some offer payment or reimbursement for time and travel, while others may not.

How safe are clinical trials?

Clinical trials follow strict ethical guidelines and protocols to safeguard participants' health. They are closely monitored and safety reviewed regularly.
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