The Living With a Long-Term Condition Study

NCT06072287 | Unknown

• 1 other identifier: HR/DP-22/23-36320
• Study Type: observational
• Target: 600
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

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

Keywords

mental health; depression; anxiety; chronic illness

Outcome Measures

Primary Outcomes (1)

• Illness-related distress

  31 item questionnaire developed by the research team designed to assess illness-related distresss.

  Week 0 and Week 1

Secondary Outcomes (6)

• Depression

  Week 0

• Anxiety

  Week 0

• Functional impairment

  Week 0

• Diabetes Related Distress Scale

  Week 0

• IBD Distress Scale

  Week 0

Study Arms (1)

Participants

Participants will answer two short questionnaires, 1 week apart.

Diagnostic Test: Living with LTC Questionnaire

Interventions

Living with LTC Questionnaire DIAGNOSTIC_TEST

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

Participants

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Adults in the UK with a diagnosis of a Long-Term Condition or chronic illness.

You may qualify if:

• 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

You may not qualify if:

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

Sponsors & Collaborators

• King's College London: lead

Study Sites (1)

King's College London

London, SE1 9RT, United Kingdom

RECRUITING

Related Links

• Study information and sign up

MeSH Terms

Conditions

Asthma; Atrial Fibrillation; Neoplasms; Cerebrovascular Disorders; Stroke; Pulmonary Disease, Chronic Obstructive; Fibromyalgia; Pain; Heart Diseases; Dementia; Diabetes Mellitus; Epilepsy; Heart Failure; Hypertension; Acquired Immunodeficiency Syndrome; Liver Diseases; Post-Acute COVID-19 Syndrome; Multiple Sclerosis; Obesity; Osteoarthritis; Arthritis; Arthritis, Rheumatoid; Osteoporosis; Parkinson Disease; Anemia, Sickle Cell; Hepatitis; Endometriosis; Nervous System Diseases; Postural Orthostatic Tachycardia Syndrome; Amyotrophic Lateral Sclerosis; Cystic Fibrosis; Migraine Disorders; Spondylitis; Celiac Disease; Hidradenitis Suppurativa; Eczema; Fatigue Syndrome, Chronic; Psychological Well-Being; Depression; Anxiety Disorders; Chronic Disease

Condition Hierarchy (Ancestors)

Bronchial Diseases; Respiratory Tract Diseases; Lung Diseases, Obstructive; Lung Diseases; Respiratory Hypersensitivity; Hypersensitivity, Immediate; Hypersensitivity; Immune System Diseases; Arrhythmias, Cardiac; Cardiovascular Diseases; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Brain Diseases; Central Nervous System Diseases; Vascular Diseases; Disease Attributes; Muscular Diseases; Musculoskeletal Diseases; Rheumatic Diseases; Neuromuscular Diseases; Neurologic Manifestations; Signs and Symptoms; Neurocognitive Disorders; Mental Disorders; Glucose Metabolism Disorders; Metabolic Diseases; Nutritional and Metabolic Diseases; Endocrine System Diseases; HIV Infections; Blood-Borne Infections; Communicable Diseases; Infections; Sexually Transmitted Diseases, Viral; Sexually Transmitted Diseases; Lentivirus Infections; Retroviridae Infections; RNA Virus Infections; Virus Diseases; Slow Virus Diseases; Genital Diseases; Urogenital Diseases; Immunologic Deficiency Syndromes; Digestive System Diseases; COVID-19; Pneumonia, Viral; Pneumonia; Respiratory Tract Infections; Coronavirus Infections; Coronaviridae Infections; Nidovirales Infections; Post-Infectious Disorders; Demyelinating Autoimmune Diseases, CNS; Autoimmune Diseases of the Nervous System; Demyelinating Diseases; Autoimmune Diseases; Overweight; Overnutrition; Nutrition Disorders; Body Weight; Joint Diseases; Connective Tissue Diseases; Skin and Connective Tissue Diseases; Bone Diseases, Metabolic; Bone Diseases; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Neurodegenerative Diseases; Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Genital Diseases, Female; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Orthostatic Intolerance; Primary Dysautonomias; Autonomic Nervous System Diseases; Spinal Cord Diseases; Motor Neuron Disease; TDP-43 Proteinopathies; Proteostasis Deficiencies; Pancreatic Diseases; Infant, Newborn, Diseases; Headache Disorders, Primary; Headache Disorders; Bone Diseases, Infectious; Spinal Diseases; Malabsorption Syndromes; Intestinal Diseases; Gastrointestinal Diseases; Skin Diseases, Bacterial; Bacterial Infections; Bacterial Infections and Mycoses; Skin Diseases, Infectious; Suppuration; Skin Diseases; Hidradenitis; Sweat Gland Diseases; Dermatitis; Skin Diseases, Eczematous; Encephalomyelitis; Neuroinflammatory Diseases; Personal Satisfaction; Behavior; Behavioral Symptoms

Study Officials

• Rona Moss-Morris, PhD

  King's College London

  PRINCIPAL INVESTIGATOR

• Annie Jones, PhD

  King's College London

  STUDY DIRECTOR

• Emma Jenkinson, MSc

  King's College London

  STUDY DIRECTOR

• Natasha Seaton, MSc

  King's College London

  STUDY DIRECTOR

Central Study Contacts

Natasha Seaton, MSc

CONTACT

0207 188 1189; LTC-study@kcl.ac.uk

Natasha Seaton, MSc

CONTACT

0207 188 1189; natasha.seaton@kcl.ac.uk

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: October 2, 2023
• First Posted: October 10, 2023
• Study Start: June 28, 2023
• Primary Completion: December 31, 2023
• Study Completion: January 10, 2024
• Last Updated: October 12, 2023

Record last verified: 2023-09

Locations

GB (1)