Development and Psychometric Validation of the Medical Dismissal Scale

N/AActive Not RecruitingNCT07809373

King's College London1,641 enrolled

Overview

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.

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.

Outcomes

Primary Outcomes

Medical Dismissal Questionnaire (MDQ)

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).

Time frame: Baseline (T0), 1-week (T1), 3-months (T2) and 6-months (T3)

Secondary Outcomes

The Wake Forest Trust in Physicians Scale (WFTPS)

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.

Time frame: Baseline (T0)

Illness Invalidation Inventory

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.

Time frame: Baseline (T0)

Stigma for Chronic Illness Scale

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.

Time frame: Baseline (T0)

Social desirability

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.

Time frame: Baseline (T0)

Personality

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.

Time frame: Baseline (T0)

Health Literacy

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.

Time frame: Baseline (T0)

Depression

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.