Official Title
Testing the Reliability and Validity of a New Measure for Illness-related Distress.
Brief Summary

Psychological distress (anxiety and depression) is common in and experienced differentlyby people living with long-term health conditions (LTCs). Being able to measure whetherpsychological distress is related to living with a LTC would allow researchers andclinicians to provide interventions specifically tailored to the challenges of livingwith a LTC and therefore provide the most appropriate support for these patients. Such ameasure would also be useful in research to identify the presence of illness-relateddistress in different patient groups. This project will therefore create a new measure ofillness-related distress that has applications for both research and clinical practice.This will involve the psychometric validation of the new illness-related distress measureto test how valid and reliable the measure is.The aim of the project is to provide initial validation of the Illness Related DistressScale in a community sample, recruited through online platforms. The objective of thestudy is to gather initial validity and reliability data for the scale.

Detailed 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.

Recruiting
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

Diagnostic Test: Living with LTC Questionnaire

A questionnaire that will ask about demographic information, mental wellbeing and
distress related to chronic illness.

Eligibility Criteria

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

Eligibility Gender
All
Eligibility Age
Minimum: 18 Years ~ Maximum: N/A
Countries
United Kingdom
Locations

King's College London
London, United Kingdom

Investigator: Natasha Seaton, MSc
Contact: 0207 188 1189
natasha.seaton@kcl.ac.uk

Contacts

Natasha Seaton, MSc
0207 188 1189
LTC-study@kcl.ac.uk

Natasha Seaton, MSc
0207 188 1189
natasha.seaton@kcl.ac.uk

King's College London
NCT Number
Keywords
Mental Health
depression
Anxiety
chronic illness
MeSH Terms
Spondylitis
Hidradenitis Suppurativa
Arthritis
Osteoporosis
Fibromyalgia
Liver Diseases
Cystic Fibrosis
Celiac Disease
Parkinson Disease
Multiple Sclerosis
Nervous System Diseases
Motor Neuron Disease
Amyotrophic Lateral Sclerosis
Cerebrovascular Disorders
Postural Orthostatic Tachycardia Syndrome
Endometriosis
Hypertension
Atrial Fibrillation
Heart Diseases
Tachycardia
Anemia, Sickle Cell
Hidradenitis