Clinical trial NCT06872268: APPLICATION OF THERAPEUTIC PHOTOGRAPHY AND EXPRESSIVE WRITING IN THE MANAGEMENT OF PATIENTS WITH MARFAN SYNDROME
Official title: THERAPEUTIC PHOTOGRAPHY AND EXPRESSIVE WRITING: AN EXPLORATORY SEQUENTIAL MIXED-METHODS FEASIBILITY STUDY OF PATIENTS WITH MARFAN SYNDROME
Study type: INTERVENTIONAL
Overall status: ACTIVE_NOT_RECRUITING
Phase: NA
Conditions: Marfan Syndrome
Keywords: therapeutic photography
expressive writing activities
Marfan syndrome
standard practice
mixed methods study
Lead sponsor: IRCCS Policlinico S. Donato
Sponsor class: OTHER
First posted: 2025-03-12
Enrollment: 8
Sex: ALL
Minimum age (years): 13
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: mixed-methods sequential exploratory study
Primary purpose: SUPPORTIVE_CARE

Brief summary: This study explores the efficacy of therapeutic photography and expressive writing as interventions in routine practice for patients with Marfan syndrome.

Detailed description: The objective of the study is to assess the feasibility of including structured therapeutic photography and expressive writing activities in routine practice as an adjunct to standard treatment for patients with Marfan syndrome in a national Reference Centre for Rare Diseases. This will include measuring the adherence rate to the programme and evaluating the subjective experience of the patients involved.

Eligibility criteria: Inclusion Criteria:

Subjects with Marfan syndrome referred to the Cardiovascular genetic center in IRCCS Policlinico San Donato;

- Signed informed consent.

Exclusion Criteria:

* Patients who are currently going through a period of severe medical or psychological instability reported in medical history.
* Subjects who are unable to provide informed consent due to cognitive, language, or other limitations that prevent full understanding of the purpose and nature of the study.

Primary outcomes:
measure: Efficacy of therapeutic photography in clinical practice
timeFrame: 18 months
measure: Efficacy of expressive writing in clinical practice
timeFrame: 18 months
Secondary outcomes:
measure: Impact of therapeutic photography
timeFrame: 18 months
measure: Impact of expressive writing
timeFrame: 18 months
measure: Pre- and post-activity effects of therapeutic photography: patients' perspective
timeFrame: 18 months
measure: Pre- and post-activity effects of expressive writing: patients' perspective
timeFrame: 18 months
measure: Qualitative analysis
timeFrame: 18 months
Other outcomes:
Locations:
city: San Donato Milanese
country: Italy
facility: IRCCS Policlinico San Donato
Study officials:
affiliation: IRCCS Policlinico S. Donato
name: Nathasha Samali UDUGAMPOLAGE, MSN
role: PRINCIPAL_INVESTIGATOR
References:
citation: Panetta M, Bianchetti A, Udugampolage NS, Taurino J, Caruso R, Pini A, Callus E. Discussing psychological and psychotherapeutic support for patients with Marfan syndrome (MFS) and their family: an example of a structured program in Italy. Front Psychol. 2023 Jun 15;14:1176692. doi: 10.3389/fpsyg.2023.1176692. eCollection 2023. No abstract available.
citation: Gibson, Neil. (2017). Therapeutic photography: enhancing patient communication. Journal of Kidney Care. 2. 46-47. 10.12968/jokc.2017.2.1.46.