Any Condition
Conditions
Keywords
Health psychology
Brief summary
Some people living with long-term physical health conditions report feeling dismissed, disbelieved, or not taken seriously when they seek healthcare. Their symptoms may be downplayed, attributed to psychological causes without good reason, or deprioritised. These experiences are sometimes described as medical dismissal, medical gaslighting or medical invalidation. There is growing concern that these experiences are common and may affect people's willingness to seek care, their trust in healthcare professionals, and their physical and mental health over time. At present, there is no reliable questionnaire designed specifically to measure these experiences in UK healthcare. Without one, it is difficult to know how common medical dismissal is, who is most affected, or whether efforts to improve patient care are working. The aim of this study is to test a new questionnaire, the Medical Dismissal Questionnaire (MDQ). The MDQ has been developed from interviews with people who have used UK healthcare services and describes the range of ways in which patients can feel dismissed by the healthcare system. This study will examine whether the MDQ is a reliable and valid measure, and will look at how experiences of medical dismissal relate to people's health, wellbeing, and use of healthcare over six months. Approximately 1400 adults living in the UK who have used healthcare services at least five times in the past two years will be recruited. Participation is entirely online. People who are interested will be directed to a secure survey where they can read about the study, check their eligibility, and provide consent. Those who take part will be asked to complete four questionnaires over six months: At the start, participants will complete a baseline questionnaire (about 30 to 40 minutes). This asks about background information, long-term conditions, the new MDQ, and other questionnaires about trust in doctors, feeling invalidated, stigma, personality, social desirability, and health literacy. It also includes measures of mood, quality of life, pain, fatigue, and beliefs about health. One week later, participants will complete a shorter questionnaire (about 5 to 10 minutes) that repeats the MDQ and one other measure. This is to check whether MDQ scores are stable over a short period. Three months and six months after the start, participants will complete follow-up questionnaires including the MDQ and measures of mental and physical health. Findings from this study will be used to check whether the MDQ measures what it is intended to measure and whether scores relate to health outcomes over time. In the longer term, the MDQ may be used in research and in healthcare settings to better understand patient experiences and to evaluate efforts to improve patient care.
Detailed description
Rationale. Existing measures of patient experience capture broad concepts such as satisfaction, trust, or perceived discrimination, but none directly assess the specific experience of feeling dismissed by a healthcare professional. Available quantitative work in this area has typically relied on bespoke, non-validated items, limiting comparability across studies and the ability to evaluate interventions intended to improve clinical communication. This study is the second of two linked studies. The first study used qualitative interviews with adults who had accessed UK healthcare and inductive content analysis to generate a pool of candidate items grounded in participant language. The present study tests the psychometric properties of the resulting Medical Dismissal Questionnaire (MDQ) in a larger, heterogeneous UK sample. Design. Prospective online observational cohort study with four assessment points over six months (baseline, one week, three months, six months). The one-week assessment supports test-retest reliability estimation. The three- and six-month assessments support examination of temporal associations between medical dismissal and health outcomes. All data are collected via Qualtrics. Setting and participants. UK adults (18 or over) with a long-term condition or persistent symptom who have self-reported healthcare use of at least five contacts in the previous two years for any health issue. Recruitment will be through social media, long-term condition charity partners, and previous research participants who consented to be re-contacted. The target sample is 1400. Procedures. Interested individuals are directed to a secure Qualtrics link containing the Participant Information Sheet, eligibility screening, consent form, and baseline questionnaire. The baseline assessment covers demographics, long-term condition history, the MDQ, measures used for convergent and divergent validity, and mental and physical health outcome measures. Disease-specific measures are presented only to participants indicating the relevant diagnosis. One week later participants are asked to complete a short repeat assessment including the MDQ and the Illness-Related Distress scale, to enable test-retest reliability estimation. At three and six months, participants complete the MDQ alongside mental and physical health outcome measures and hypothesised mechanism variables; measures used solely for convergent and divergent validity are not repeated. Brief demographics are collected again at the one-week timepoint to support identification of duplicate or inauthentic responses. Bot and fraudulent response detection procedures include ReCaptcha, response-time thresholds, attention-check items and validation of demographic and clinical variables. Planned analyses. Statistical analysis plans will be registered on open science foundation (https://osf.io/wa8ey/). Structural validity of the MDQ will be examined using Confirmatory Factor Analysis and Exploratory Structural Equation Modelling in RStudio and Mplus, with model fit assessed against established indices (CFI, TLI, RMSEA, SRMR). A predetermined iterative sequence will test unidimensional, correlated-factors, and bifactor models, with bifactor solutions additionally evaluated using bifactor omega coefficients. Internal consistency of the total score and any retained subscales will be estimated using McDonald's omega. Test-retest reliability across the baseline and one-week assessments will be estimated using intraclass correlation coefficients. Convergent and divergent validity will be examined through correlations between MDQ scores and relevant variables. Longitudinal analyses will investigate the relationship with MDQ and mental and physical health outcomes. Potential biopsychosocial mediators and moderators will be investigated. Ethics and data management. The study has been reviewed by the King's College London Health Faculties (Purple) Research Ethics Subcommittee. All data are held on King's College London secure infrastructure. Fully anonymised data from this study will be deposited in an open data repository following study completion. Dissemination. Findings will be reported in peer-reviewed publications, at academic conferences, and through lay summaries shared on social media and with participating charity partners.
Interventions
None listed
Sponsors
Study design
Eligibility
Inclusion criteria
* Adults (18+) * Able to provide informed consent. * Proficient in English to answer questions about your health * Are a UK resident * Have an email address and phone number * Have used or tried to use healthcare services at least 5 times in the past two years for any kind of health issue. * Have a diagnosis of a long-term condition (e.g., asthma, diabetes, heart disease, IBS, depression) or have experienced a persistent symptom for a period of 6 months
Exclusion criteria
* Lacking capacity to give informed consent. * Under 18 * Not based in the UK * Have not used or tried to use healthcare services at least 5 times in the past two years
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Medical Dismissal Questionnaire (MDQ) | Baseline (T0), 1-week (T1), 3-months (T2) and 6-months (T3) | The purpose of this study is to perform the psychometric validation of a new scale to measure medical dismissal. Draft items (n=85) were developed from content analysis of n=44 semi-structured interviews. Item responses are based on a 5-point Likert scale (Never=0, Always=4). |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| The Wake Forest Trust in Physicians Scale (WFTPS) | Baseline (T0) | The WFTPS is a 10-item measure of trust in physicians that employs a 5-point Likert scale, with ratings ranging from "Strongly Agree" to "Strongly Disagree." Hall, M. A., Camacho, F., Dugan, E., \& Balkrishnan, R. (2002). Trust in the medical profession: conceptual and measurement issues. Health services research, 37(5), 1419-1439. |
| Illness Invalidation Inventory | Baseline (T0) | The illness invalidation inventory measures invalidation by each of five sources (spouse, family, medical professionals, work environment and social services). It consists of two factors: discounting (five items) and lack of understanding (three items; see figure 1). Participants indicate on a 5-point scale (1, never; 2, seldom; 3, sometimes; 4, often; 5, very often). Kool, M. B., Van Middendorp, H., Lumley, M. A., Schenk, Y., Jacobs, J. W. G., Bijlsma, J. W. J., \& Geenen, R. (2010). Lack of understanding in fibromyalgia and rheumatoid arthritis: the Illness Invalidation Inventory (3\* I). Annals of the Rheumatic Diseases, 69(11), 1990-1995. |
| Stigma for Chronic Illness Scale | Baseline (T0) | Stigma for chronic illness scale will be assessed with stigma scale for chronic illnesses 8-item version (SSCI-8). The SSCI-8 assesses components of both enacted (eg, "Because of my illness, people were unkind to me") and internalized stigma (eg, "I felt embarrassed because of my physical limitations"). Each item is rated on a 5-point Likert response scale: 1 = never, 5 = always. Higher scores on the measure reflect greater stigma. |
| Social desirability | Baseline (T0) | Social desirability will be measured with the Brief Social Desirability Scale (BSDS). It is a four item scale with responses coded 0 = No and 1 = Yes (sample item: "Would you ever lie to people?"). Scores for the social desirability items were summed, with higher scores indicating a higher tendency toward socially desirable responses. |
| Personality | Baseline (T0) | Personality will be assess with the Ten Item Personality Inventory (TIPI). The TIPI is a brief instrument designed to assess the five factor model of personality dimensions. It has five subscales, one for each dimension. |
| Health Literacy | Baseline (T0) | Health literacy will be assessed with the Health Literacy Survey (HLS-Q12). It is a 12-item scale, and higher scores indicate better health literacy. |
| Depression | Baseline (T0), 3-months (T2) and 6-months (T3) | Depressive symptoms will be assessed using the eight-item Patient Health Questionnaire - 8 (PHQ-8). Each item is responded to on a 4-point Likert Scale (0-3). The PHQ-8 has a scale range of 0-24, higher scores indicate increased depressive symptoms. |
| Anxiety | Baseline (T0), 3-months (T2) and 6-months (T3) | Anxiety symptoms will be assessed using the seven-item GAD Scale (GAD-7). Each item is responded to on a 4-point Likert Scale (0-3). The GAD-7 has a scale range of 0-21, higher scores indicate increased anxiety symptoms. Spitzer, R., K. Kroenke, and J. Williams, Generalized anxiety disorder 7-item (GAD-7) scale. Arch Intern Med, 2006. 166: p. 1092-7. |
| Functional impairment | Baseline (T0), 3-months (T2) and 6-months (T3) | Functional impairment will be assessed with the Work and Social Adjustment Scale (WSAS). It uses five items scored on a 9-point Likert scale. Scores range from 0 to 40, with higher scores indicating greater impairments in functioning. Mundt, J. C., Marks, I. M., Shear, M. K., \& Greist, J. M. (2002). The Work and Social Adjustment Scale: a simple measure of impairment in functioning. The British Journal of Psychiatry, 180(5), 461-464. |
| Illness-related distress | Baseline (T0), 1-week (T1), 3-months (T2) and 6-months (T3) | Illness-related distress will be measured with the Illness Related Distress (IRD) Scale. The IRD scale is made up of two 7 item subscales, intrapersonal distress and interpersonal distress. Each item is rated on a Likert Scale (0=Never, 5=always). Higher scores indicate higher levels of distress. Jones AS, Seaton N, Brown A, Jenkinson E, Carroll S, Dietz KC, Hudson JL, Wroe A, Moss-Morris R. The Illness-Related Distress Scale: development and psychometric evaluation of a new transdiagnostic measure. Psychological Medicine. 2025 Jan;55:e122. |
| Health-Related Quality of Life | Baseline (T0), 3-months (T2) and 6-months (T3) | Health-related quality of life will be assessed with theEq-5D-3L - EuroQol, G. (1990). EuroQol--a new facility for the measurement of health-related quality of life. Health policy (Amsterdam, Netherlands), 16, 199-208. |
| Pain severity | Baseline (T0), 3-months (T2) and 6-months (T3) | Pain will be assessed with the MAPP Body Map. It has 45 body regions, and these are each rated on intensity on a 0-10 scale. Clemens, J. Q., Locke Jr, K., Landis, J. R., Kreder, K., Rodriguez, L. V., Yang, C. C., ... \& Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. (2024). Validation of a simple body map to measure widespread pain in urologic chronic pelvic pain syndrome: A MAPP Research Network study. Neurourology and urodynamics, 43(3), 727-737. |
| Fatigue severity | Baseline (T0), 3-months (T2) and 6-months (T3) | Fatigue will be assessed with the Chalder Fatigue Questionnaire (CFQ), is a brief, self-administered questionnaire that measures the severity of physical and mental fatigue using an 11-item questionnaire. Response are on a 4-point Likert scale. Higher scores indicate greater fatigue. Chalder T, Berelowitz G, Pawlikowska T, Watts L, Wessely S, Wright D, Wallace EP. Development of a fatigue scale. Journal of psychosomatic research. 1993 Feb 1;37(2):147-53. |
| IBS Severity | Baseline (T0), 3-months (T2) and 6-months (T3) | For IBS participants: The irritable bowel severity scoring system (IBS-SS) will measure the severity of IBS symptoms. Francis CY, Morris J, Whorwell PJ. The irritable bowel severity scoring system: a simple method of monitoring irritable bowel syndrome and its progress. Aliment Pharmacol Ther. 1997 Apr;11(2):395-402. doi: 10.1046/j.1365-2036.1997.142318000.x. PMID: 9146781. |
| Bladder pain severity | Baseline (T0), 3-months (T2) and 6-months (T3) | For participants who indicate bladder pain: The O'Leary-Sant Interstitial Symptom Index (ICSI) will be used to measure severity of bladder pain symptoms. O'Leary MP, Sant GR, Fowler Jr FJ, Whitmore KE, Spolarich-Kroll J. The interstitial cystitis symptom index and problem index. Urology. 1997 May 1;49(5):58-63. |
| Ulcerative Colitis Symptom Severity | Baseline (T0), 3-months (T2) and 6-months (T3) | For ulcerative colitis participants: A reliable and validated Patient-Reported Outcome Measure for the assessment of disease activity in Ulcerative Colitis, often used in clinical trials and research, will be administered. Questions ask about abdominal pain in last 7 days, stool frequency over last 7 days and rectal bleeding over the last 3 days. Responses are combined to create a total. Jairath V, Khanna R, Zou G, Stitt L, Mosli M, Vandervoort M, et al. Development of interim patient-reported outcome measures for the assessment of ulcerative colitis disease activity in clinical trials. Alimentary pharmacology \& therapeutics. 2015;42(10):1200-10. |
| Crohn's Disease Symptom Severity | Baseline (T0), 3-months (T2) and 6-months (T3) | For Crohn's Disease participants: A reliable and validated Patient-Reported Outcome Measure for the assessment of disease activity in Crohn's Disease, often used in clinical trials and research, will be administered. Questions ask about abdominal pain and stool frequency over last 7 days. Responses are combined to create a total. Khanna R, Zou G, D'haens G, Feagan B, Sandborn W, Vandervoort M, et al. A retrospective analysis: the development of patient reported outcome measures for the assessment of Crohn's disease activity. Alimentary pharmacology \& therapeutics. |
| Asthma Severity | Baseline (T0), 3-months (T2) and 6-months (T3) | For asthma participants: The Asthma Control Questionnaire (ACQ-5) will assess asthma severity. It has five items (each scored 0-6) and asks about asthma symptoms in the last week (waking in the night due to asthma, severity if symptoms in the morning, limitations of activities, shortness of breath, wheezing). Juniper EF, Svensson K, Mörk AC, Ståhl E. Measurement properties and interpretation of three shortened versions of the asthma control questionnaire. Respir Med. 2005 May;99(5):553-8. doi: 10.1016/j.rmed.2004.10.008. Epub 2004 Nov 26. PMID: 15823451. |
| Inflammatory Arthritis/ Rheumatoid Arthritis Severity | Baseline (T0), 3-months (T2) and 6-months (T3) | For Inflammatory Arthritis participants: disease severity will be assessed with the 12-item Clinical Arthritis Activity index (PRO-CLARA). Salaffi F, Migliore A, Scarpellini M, Corsaro SM, Lagana B, Mozzani F, Varcasia G, Pusceddu M, Pomponio G, Romeo N, Maier A. Psychometric properties of an index of three patient-reported outcome (PRO) measures, termed the CLinical ARthritis Activity (PRO-CLARA) in patients with rheumatoid arthritis. The NEW INDICES study. Clinical \& Experimental Rheumatology. 2010 Mar 1;28(2):186. |
| MS Severity | Baseline (T0), 3-months (T2) and 6-months (T3) | For MS patients: disease severity will be assessed with the patient-reported outcome measure of the Expanded Disability Status Scale (EDSS). The final ePR-EDSS version includes 23 questions, takes approximately 7 minutes to complete. The EDSS items that relate to mood (final two items, that are equivalent to first two items of PHQ-9) were omitted. Romeo AR, Rowles WM, Schleimer ES, Barba P, Hsu WY, Gomez R, Santaniello A, Zhao C, Pearce JR, Jones JB, Cree BC, Hauser SL, Gelfand JM, Stewart WF, Goodin DS, Bove RM. An electronic, unsupervised patient-reported Expanded Disability Status Scale for multiple sclerosis. Mult Scler. 2021 Aug;27(9):1432-1441. doi: 10.1177/1352458520968814. Epub 2020 Nov 25. PMID: 33236967; PMCID: PMC8144241. |
| Cognitive and behavioural responses to symptoms | Baseline (T0), 3-months (T2) and 6-months (T3) | Cognitive and behavioural responses to symptoms will be measured with the short version of the Cognitive and Behavioural Responses Questionnaire (CBRQ) subscales: Fear avoidance, Damage beliefs, Catastrophising, Embarrassment avoidance, Symptom focusing, All-or-nothing behaviour and Avoidance/Resting behaviour. Picariello F, Chilcot J, Chalder T, Herdman D, Moss-Morris R. The Cognitive and Behavioural Responses to Symptoms Questionnaire (CBRQ): Development, reliability and validity across several long-term conditions. British journal of health psychology. 2023 May;28(2):619-38. |
| Early Life Adversity | Baseline (T0) | Early life adversity was measured using the questionnaire of unpredictability in childhood (QUIC) which is a self-report measure that assesses predictability in the childhood environment prior to age 18, with a subset of questions specifically focusing on earlier childhood prior to age 12. The QUIC comprises of 38 items which are grouped into five subscales; parental involvement (9 items), parental predictability (12 items e.g. 'At least one of my parents was disorganised'), parental environment (7 items), physical environment (7 items), safety and security (3 items). Participants respond 'Yes' or 'No' to each item, with the 'Yes' answers summed for the total score. The scale ranges from 0 to 38, with a higher score indicating greater exposure to unpredictability in childhood. |
| Psychological inflexibility | Baseline (T0), 3-months (T2) and 6-months (T3) | Psychological inflexibility will be measured with the Acceptance and Action Questionnaire-2 (AAQ-2). The scale measures experiential avoidance (efforts to control or avoid unwanted thoughts and feelings) and the impact of this avoidance on one's life. The questionnaire includes seven questions each rated on a seven-point scale (1 = Never True; 7 = Always True) with a total score ranging between 7 and 49. Bond FW, Hayes SC, Baer RA, Carpenter KM, Guenole N, Orcutt HK, Waltz T, Zettle RD. Preliminary psychometric properties of the Acceptance and Action Questionnaire-II: A revised measure of psychological inflexibility and experiential avoidance. Behavior therapy. 2011 Dec 1;42(4):676-88. |
| Interoceptive Sensibility | Baseline (T0), 3-months (T2) and 6-months (T3) | Interoceptive sensibility was measured using the Multidimensional Assessment of Interoceptive Awareness (MAIA-2). The MAIA-2 has 37 items for 8 factors (attention regulation, self-regulation, noticing, not worrying, not distracting, body listening, trusting and emotional awareness). Mehling, W. E., Acree, M., Stewart, A., Silas, J., \& Jones, A. (2018). The multidimensional assessment of interoceptive awareness, version 2 (MAIA-2). PLoS One, 13(12), e0208034. |
| Illness Perceptions | Baseline (T0), 3-months (T2) and 6-months (T3) | The brief illness perception questionnaire (BIPQ) will measure illness perceptions. These include items: consequences, controllability (personal and treatment), identity, concerns, coherence, timeline and emotional impact. Broadbent E, Petrie KJ, Main J, Weinman J. The brief illness perception questionnaire. Journal of psychosomatic research. 2006 Jun 1;60(6):631-7. |
| Employment | Baseline (T0), 3-months (T2) and 6-months (T3) | Employment status will be self-reported with participants selecting from census-derived categories. Participants will also i) how many sick days they've taken due to ill health and ii) rate the impact of their health on their productivity at work on a 11-point scale (0=no impact, 10=completely impacted), |
| Bladder pain impact | Baseline (T0), 3-months (T2) and 6-months (T3) | For participants who indicate bladder pain: The O'Leary-Sant Interstitial Cystitis Problem Index (ICPI) will be used to measure the personal impact of bladder pain symptoms. O'Leary MP, Sant GR, Fowler Jr FJ, Whitmore KE, Spolarich-Kroll J. The interstitial cystitis symptom index and problem index. Urology. 1997 May 1;49(5):58-63. |
Countries
United Kingdom
Contacts
King's College London