The Living With a Long-Term Condition Study

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Total Enrollment

600 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-06-28

Study Completion Date

2024-01-10

Brief Summary

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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.

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Detailed Description

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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.

Conditions

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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

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Participants

Participants will answer two short questionnaires, 1 week apart.

Living with LTC Questionnaire

Intervention Type DIAGNOSTIC_TEST

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

Interventions

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Living with LTC Questionnaire

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

Intervention Type DIAGNOSTIC_TEST

Eligibility Criteria

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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