Lynch surveillance-study

Attitudes towards Lynch surveillance; can we do better? - Lynch Surveillance-Study

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

NL-OMON

Registry ID

NL-OMON58483

Enrollment

Registered

2026-02-16

Start date

2026-05-01

Completion date

Unknown

Last updated

2026-04-14

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Lynch Syndrome Hereditary colon cancer

Interventions

Four different questionnaires.

Eligibility

Age

18 Years to 64 Years

Inclusion criteria

Inclusion criteria: Lynch syndrome carrier (molecularly confirmed);Fit to undergo colonoscopy surveillance; Index colonoscopy already performed;Have granted informed consent to participate in this study.

Exclusion criteria

Exclusion criteria: Lynch Syndrome carriers who refuse or are unable to participate in colonoscopy surveillanceLynch Syndrome carriers who have undergone a proctocolectomyRelatives of carriers enrolled in LS surveillance programs that have not yet been tested for these pathogenic variants;Not able to read or understand Dutch language or mentally not capable.

Design outcomes

Primary

Measure	Time frame
The aim of this study is to explore the attitude of LS carriers towards their current colonoscopy surveillance program. Attitudes of the patients include ideas, anxieties, and burdens, which will be measured through different focused questionnaires. This will be done via qualitative and quantitative analysis. Three questionnaires will be used to gain insight into patients’ ideas, anxieties, and burdens. Some questions in the questionnaires have open answers, on which qualitative assessment will be used to identify trends in reasons why people have a certain attitude. All other questions have closed answers, specifically an ordinal scale (strongly disagree - strongly agree), on which a quantitative analysis will be done. The three questionnaires to be used are: (1) Expected Burden of colonoscopy Questionnaire (EBQ), (2) Perceived Burden of colonoscopy Questionnaire (PBQ), and (3) the Cancer Worry Scale (CWS).	—

Measure

Time frame

The aim of this study is to explore the attitude of LS carriers towards their current colonoscopy surveillance program. Attitudes of the patients include ideas, anxieties, and burdens, which will be measured through different focused questionnaires. This will be done via qualitative and quantitative analysis. Three questionnaires will be used to gain insight into patients’ ideas, anxieties, and burdens. Some questions in the questionnaires have open answers, on which qualitative assessment will be used to identify trends in reasons why people have a certain attitude. All other questions have closed answers, specifically an ordinal scale (strongly disagree - strongly agree), on which a quantitative analysis will be done. The three questionnaires to be used are: (1) Expected Burden of colonoscopy Questionnaire (EBQ), (2) Perceived Burden of colonoscopy Questionnaire (PBQ), and (3) the Cancer Worry Scale (CWS).

—

Secondary

Measure	Time frame
To evaluate attitudes of LS patients towards potentially prolonging the interval between colonoscopies from two to three years. For this purpose, we have developed a new questionnaire, Extending of Surveillance Specific Questionnaire (ESSQ), which focuses solely on the surveillance interval.	—

Countries

Netherlands

Contacts

Public ContactA. Wagner

Erasmus MC, Universitair Medisch Centrum Rotterdam

a.wagner@erasmusmc.nl010-7036913

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP) · Data processed: Apr 17, 2026