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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Participants | Participants will answer two short questionnaires, 1 week apart. |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Living with LTC Questionnaire | Diagnostic Test | A questionnaire that will ask about demographic information, mental wellbeing and distress related to chronic illness. |
|
| Measure | Description | Time Frame |
|---|---|---|
| Illness-related distress | 31 item questionnaire developed by the research team designed to assess illness-related distresss. | Week 0 and Week 1 |
| Measure | Description | Time Frame |
|---|---|---|
| Depression | Eight-item Patient Health Questionnaire - 8 (PHQ-8) Minimum=0, maximum=24, with higher scores indicating greater depression. | Week 0 |
| Anxiety | Seven-item Generalised Anxiety Disorder Scale (GAD-7). Minimum=0, maximum=21, with higher scores indicating greater anxiety. |
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Inclusion Criteria:
Exclusion Criteria:
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Adults in the UK with a diagnosis of a Long-Term Condition or chronic illness.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Natasha Seaton, MSc | Contact | 0207 188 1189 | LTC-study@kcl.ac.uk | |
| Natasha Seaton, MSc | Contact | 0207 188 1189 | natasha.seaton@kcl.ac.uk |
| Name | Affiliation | Role |
|---|---|---|
| Rona Moss-Morris, PhD | King's College London | Principal Investigator |
| Annie Jones, PhD | King's College London | Study Director |
| Emma Jenkinson, MSc |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| King's College London | Recruiting | London | SE1 9RT | United Kingdom |
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| Label | URL |
|---|---|
| Study information and sign up | View source |
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| Week 0 |
| Functional impairment | Five-item Work and Social Adjustment Scale (WSAS). Minimum=0, maximum=50, with higher scores indicating greater functional impairment. | Week 0 |
| Diabetes Related Distress Scale | Diabetes Related Distress Scale (DDS-17), a 17 item self-report diabetes related distress questionnaire. Minimum=17, maximum=102, with higher scores indicating greater distress. | Week 0 |
| IBD Distress Scale | IBD Distress Scale, a 28 item self-report IBD related distress questionnaire. Minimum=29, maximum=145, with higher scores indicating greater distress. | Week 0 |
| Cognitive and Behavioural Responses to Symptoms | Cognitive Behavioural Responses to Symptoms Questionnaire, 40 item self-report questionnaire consisting of seven subscales with items scored on a 5 point scale. Higher scores correspond with stronger presence of the specific cognitive/behavioural response. The seven subscales refer to 1) fear avoidance, 2) catastrophising, 3) damage beliefs, 4) embarassment avoidance 5) symptom focussing 6) all-or-nothing behaviour and 7) avoidance/resting behaviour. | Week 0 |
| King's College London |
| Study Director |
| Natasha Seaton, MSc | King's College London | Study Director |
| ID | Term |
|---|---|
| D001249 | Asthma |
| D001281 | Atrial Fibrillation |
| D009369 | Neoplasms |
| D002561 | Cerebrovascular Disorders |
| D020521 | Stroke |
| D029424 | Pulmonary Disease, Chronic Obstructive |
| D005356 | Fibromyalgia |
| D010146 | Pain |
| D006331 | Heart Diseases |
| D003704 | Dementia |
| D003920 | Diabetes Mellitus |
| D004827 | Epilepsy |
| D006333 | Heart Failure |
| D006973 | Hypertension |
| D000163 | Acquired Immunodeficiency Syndrome |
| D008107 | Liver Diseases |
| D000094024 | Post-Acute COVID-19 Syndrome |
| D009103 | Multiple Sclerosis |
| D009765 | Obesity |
| D010003 | Osteoarthritis |
| D001168 | Arthritis |
| D001172 | Arthritis, Rheumatoid |
| D010024 | Osteoporosis |
| D010300 | Parkinson Disease |
| D000755 | Anemia, Sickle Cell |
| D006505 | Hepatitis |
| D004715 | Endometriosis |
| D009422 | Nervous System Diseases |
| D054972 | Postural Orthostatic Tachycardia Syndrome |
| D000690 | Amyotrophic Lateral Sclerosis |
| D003550 | Cystic Fibrosis |
| D008881 | Migraine Disorders |
| D013166 | Spondylitis |
| D002446 | Celiac Disease |
| D017497 | Hidradenitis Suppurativa |
| D004485 | Eczema |
| D015673 | Fatigue Syndrome, Chronic |
| D000092862 | Psychological Well-Being |
| D003863 | Depression |
| D001008 | Anxiety Disorders |
| D002908 | Chronic Disease |
| ID | Term |
|---|---|
| D001982 | Bronchial Diseases |
| D012140 | Respiratory Tract Diseases |
| D008173 | Lung Diseases, Obstructive |
| D008171 | Lung Diseases |
| D012130 | Respiratory Hypersensitivity |
| D006969 | Hypersensitivity, Immediate |
| D006967 | Hypersensitivity |
| D007154 | Immune System Diseases |
| D001145 | Arrhythmias, Cardiac |
| D002318 | Cardiovascular Diseases |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D014652 | Vascular Diseases |
| D020969 | Disease Attributes |
| D009135 | Muscular Diseases |
| D009140 | Musculoskeletal Diseases |
| D012216 | Rheumatic Diseases |
| D009468 | Neuromuscular Diseases |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D044882 | Glucose Metabolism Disorders |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D004700 | Endocrine System Diseases |
| D015658 | HIV Infections |
| D000086982 | Blood-Borne Infections |
| D003141 | Communicable Diseases |
| D007239 | Infections |
| D015229 | Sexually Transmitted Diseases, Viral |
| D012749 | Sexually Transmitted Diseases |
| D016180 | Lentivirus Infections |
| D012192 | Retroviridae Infections |
| D012327 | RNA Virus Infections |
| D014777 | Virus Diseases |
| D012897 | Slow Virus Diseases |
| D000091662 | Genital Diseases |
| D000091642 | Urogenital Diseases |
| D007153 | Immunologic Deficiency Syndromes |
| D004066 | Digestive System Diseases |
| D000086382 | COVID-19 |
| D011024 | Pneumonia, Viral |
| D011014 | Pneumonia |
| D012141 | Respiratory Tract Infections |
| D018352 | Coronavirus Infections |
| D003333 | Coronaviridae Infections |
| D030341 | Nidovirales Infections |
| D000094025 | Post-Infectious Disorders |
| D020278 | Demyelinating Autoimmune Diseases, CNS |
| D020274 | Autoimmune Diseases of the Nervous System |
| D003711 | Demyelinating Diseases |
| D001327 | Autoimmune Diseases |
| D050177 | Overweight |
| D044343 | Overnutrition |
| D009748 | Nutrition Disorders |
| D001835 | Body Weight |
| D007592 | Joint Diseases |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D001851 | Bone Diseases, Metabolic |
| D001847 | Bone Diseases |
| D020734 | Parkinsonian Disorders |
| D001480 | Basal Ganglia Diseases |
| D009069 | Movement Disorders |
| D000080874 | Synucleinopathies |
| D019636 | Neurodegenerative Diseases |
| D000745 | Anemia, Hemolytic, Congenital |
| D000743 | Anemia, Hemolytic |
| D000740 | Anemia |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D006453 | Hemoglobinopathies |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D005831 | Genital Diseases, Female |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D054971 | Orthostatic Intolerance |
| D054969 | Primary Dysautonomias |
| D001342 | Autonomic Nervous System Diseases |
| D013118 | Spinal Cord Diseases |
| D016472 | Motor Neuron Disease |
| D057177 | TDP-43 Proteinopathies |
| D057165 | Proteostasis Deficiencies |
| D010182 | Pancreatic Diseases |
| D007232 | Infant, Newborn, Diseases |
| D051270 | Headache Disorders, Primary |
| D020773 | Headache Disorders |
| D001850 | Bone Diseases, Infectious |
| D013122 | Spinal Diseases |
| D008286 | Malabsorption Syndromes |
| D007410 | Intestinal Diseases |
| D005767 | Gastrointestinal Diseases |
| D017192 | Skin Diseases, Bacterial |
| D001424 | Bacterial Infections |
| D001423 | Bacterial Infections and Mycoses |
| D012874 | Skin Diseases, Infectious |
| D013492 | Suppuration |
| D012871 | Skin Diseases |
| D016575 | Hidradenitis |
| D013543 | Sweat Gland Diseases |
| D003872 | Dermatitis |
| D017443 | Skin Diseases, Eczematous |
| D004679 | Encephalomyelitis |
| D000090862 | Neuroinflammatory Diseases |
| D010549 | Personal Satisfaction |
| D001519 | Behavior |
| D001526 | Behavioral Symptoms |
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