APPLICATION OF THERAPEUTIC PHOTOGRAPHY AND EXPRESSIVE WRITING IN THE MANAGEMENT OF PATIENTS WITH MARFAN SYNDROME (FOTOTEMA)

September 8, 2025 updated by: Alessandro Pini, IRCCS Policlinico S. Donato

THERAPEUTIC PHOTOGRAPHY AND EXPRESSIVE WRITING: AN EXPLORATORY SEQUENTIAL MIXED-METHODS FEASIBILITY STUDY OF PATIENTS WITH MARFAN SYNDROME

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

Study Overview

Status

Completed

Conditions

Intervention / Treatment

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.

Study Type

Interventional

Enrollment (Actual)

8

Phase

  • Not Applicable

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • Italy
    • Italy
      • San Donato Milanese, Italy, Italy, 20097
        • IRCCS Policlinico San Donato

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

  • Child
  • Adult
  • Older Adult

Accepts Healthy Volunteers

No

Description

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.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Primary Purpose: Supportive Care
  • Allocation: N/A
  • Interventional Model: Single Group Assignment
  • Masking: None (Open Label)

Arms and Interventions

Participant Group / Arm
Intervention / Treatment
Experimental: Intervention group
Subjects with Marfan syndrome in follow-up at Cardiovascular Genetic Center, IRCCS Policlinico San Donato
Behavioral: Therapeutic photography and expressive writing
Therapeutic photography, unlike phototherapy, consists of a set of photography-based activities that are initiated independently as part of an organised group or project, but in which no formal therapy is taking place within a psychotherapeutic setting. This approach, too, can be used as a routine practice in treatment pathways. The subject deepens his or her self-awareness to improve the sense of being: images become a way to express oneself, to communicate what one is unable to verbalize. Therapeutic photography can be done independently and individually, or in the presence of other professionals (nurses, sociologists, teachers, facilitators, psychologists) who accompany the individual to the understanding and production of the activity.
Behavioral: Expressive writing
Expressive writing is a technique that helps to understand and manage one's experiences and emotional tensions, contributes to mental and physical well-being, decreased stress, improved relationships, and the strengthening of the immune system.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Efficacy of therapeutic photography in clinical practice
Time Frame: 18 months
This approach will be assessed through semi-structured interviews and thematic analysis of photographs generated by participants to deepen their personal experience of living with a rare disease
18 months
Efficacy of expressive writing in clinical practice
Time Frame: 18 months
This approach will be assessed through semi-structured interviews and thematic analysis texts generated by participants to deepen their personal experience of living with a rare disease
18 months

Secondary Outcome Measures

Outcome Measure
Measure Description
Time Frame
Impact of therapeutic photography
Time Frame: 18 months
Detect and compare the impact of therapeutic photography activities on patients and their perception of its effect in their care. This approach will be assessed through semi-structured interviews and thematic analysis of photographs generated by participants to deepen their personal experience of living with a rare disease
18 months
Impact of expressive writing
Time Frame: 18 months
Detect and compare the impact of expressive writing activities on patients and their perception of its effect in their care. This approach will be assessed through semi-structured interviews and thematic analysis of texte written by participants to deepen their personal experience of living with a rare disease
18 months
Pre- and post-activity effects of therapeutic photography: patients' perspective
Time Frame: 18 months
Psychological General Well-Being Index (PGWBI) questionnaire will be applied for the evaluation of this outcome
18 months
Pre- and post-activity effects of expressive writing: patients' perspective
Time Frame: 18 months
Exploring patients' perceptions of attractiveness, efficiency, clarity, reliability, stimulation and originality of the program through standardized evaluations as a measure of proximity of feasibility.
18 months
Qualitative analysis
Time Frame: 18 months
Exploring the experience of the patients involved with qualitative analysis of interviews, texts and photographs.
18 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

IRCCS Policlinico S. Donato

Investigators

  • Principal Investigator: Nathasha Samali UDUGAMPOLAGE, MSN, IRCCS Policlinico S. Donato

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start (Actual)

April 2, 2024

Primary Completion (Actual)

April 1, 2025

Study Completion (Actual)

July 31, 2025

Study Registration Dates

First Submitted

January 17, 2025

First Submitted That Met QC Criteria

March 6, 2025

First Posted (Actual)

March 12, 2025

Study Record Updates

Last Update Posted (Estimated)

September 10, 2025

Last Update Submitted That Met QC Criteria

September 8, 2025

Last Verified

September 1, 2025

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • FOTOTEMA

Plan for Individual participant data (IPD)

Plan to Share Individual Participant Data (IPD)?

NO

IPD Plan Description

IPD will be shared after study closure.

Drug and device information, study documents

Studies a U.S. FDA-regulated drug product

No

Studies a U.S. FDA-regulated device product

No

product manufactured in and exported from the U.S.

No

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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