Clinical trial NCT06169709: An Online Survey for Women with Attention Deficit Hyperactivity Disorder (ADHD)
Official title: Diagnosis and Experiences from Women with ADHD; an International Survey
Study type: OBSERVATIONAL
Overall status: RECRUITING
Conditions: ADHD
Lead sponsor: Parnassia Groep
Sponsor class: OTHER
First posted: 2023-12-13
Enrollment: 3000
Sex: FEMALE
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Observational model: CASE_ONLY
Time perspective: CROSS_SECTIONAL
Sampling method: NON_PROBABILITY_SAMPLE
Study population: The survey is aimed at women (or people who identify as women) over 18 years with ADHD (both self-diagnosed and diagnosed by a health professional).

Brief summary: The goal of this exploratory study following a cross-sectional online survey in women with ADHD is to

1. describe overall experiences regarding ADHD symptoms, diagnosis, treatment, sources of support, and any perceived barriers on those domains;
2. determine which life domains are most affected by ADHD symptoms;
3. calculate the prevalence of reported health conditions within the following domains: circulatory system, endocrine or metabolic system, gastrointestinal system, genitourinary system, musculoskeletal system, nervous system, respiratory system, skin, reproductive system, cancer, psychiatric conditions, COVID-19, sensory sensitivity, menstrual cycle, and sleep;
4. identify topics that women with ADHD would like to see studied in future research.

Detailed description: Rationale: In clinical practice, the investigators see that ADHD affects women differently than men. It has become clear that a better understanding of ADHD in girls and women is needed to improve their longer-term wellbeing and functional and clinical outcomes.

Objective: The primary endpoint is to describe the overall experience of women with ADHD regarding ADHD symptoms, diagnosis, treatment, and any perceived barriers relating to these domains. The investigators also want to determine the effects of ADHD symptoms on day-to-day life across various life domains. Moreover, the investigators want to determine the prevalence of reported health conditions.

Study design: This is an exploratory study following a cross-sectional online survey.

Study population: Women (aged \>18 years) with ADHD.

Intervention (if applicable): Not applicable.

Main study parameters/endpoints: In women with ADHD, the investigators want to 1) describe overall experiences regarding ADHD symptoms, diagnosis, treatment, sources of support, and any perceived barriers on those domains; 2) determine which life domains are most affected by ADHD symptoms; 3) calculate the prevalence of reported health conditions within the following domains: circulatory system, endocrine or metabolic system, gastrointestinal system, genitourinary system, musculoskeletal system, nervous system, respiratory system, skin, reproductive system, cancer, psychiatric conditions, COVID-19, sensory sensitivity, menstrual cycle, and sleep; 4) identify topics that women with ADHD would like to see studied in future research.

Nature and extent of the burden and risks associated with participation, benefit and group relatedness: This survey is the first to study experiences and health of women with ADHD internationally, and results will provide insights and leads for all involved with diagnosis and treatment of these women. Risks of participation are considered low. Participants might consider certain questions triggering, but are always free to skip questions and stop the survey.

Eligibility criteria: Inclusion Criteria:

* Identify as a woman
* Aged 18 or above
* Have ADHD (both diagnosed by a health professional and self-diagnosed)

Exclusion Criteria:

* People who are not able to read, understand, or sign the information letter or informed consent form are excluded from participation.

Primary outcomes:
measure: To describe the overall experiences, thoughts, and perspectives of women with ADHD, including domains of ADHD diagnosis and symptoms, ADHD and other health conditions, menstrual cycle, conflict tactics and romantic relationships, and sleep.
timeFrame: 50 minutes
Secondary outcomes:
measure: To identify topics for further research and ways of improving healthcare (e.g. the diagnostic process or effective treatment) for women with ADHD
timeFrame: 50 minutes
Other outcomes:
Locations:
city: Den Haag
country: Netherlands
facility: Parnassia Groep
Study officials:
affiliation: PsyQ
name: Sandra Kooij, Prof. dr.
role: PRINCIPAL_INVESTIGATOR
References: