the living with a long-term condition study

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

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.

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 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

Keywords: mental health depression anxiety chronic illness