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Distress Related to the Feeling of Loss of Dignity in Patients With Rheumatic Diseases

Association Between the Presence of Distress Related to the Feeling of Loss of Dignity and Quality of Life in Patients With Rheumatic Diseases

Status
UNKNOWN
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT05248464
Enrollment
309
Registered
2022-02-21
Start date
2022-03-01
Completion date
2023-03-01
Last updated
2022-04-06

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

Conditions

Dignity, Distress, Emotional, Quality of Life, Rheumatic Diseases

Brief summary

Rheumatic diseases (RD) are an important group of different clinical entities and specific diseases that affect a significant proportion of the world population. In Mexico, the RD have a relevant representation in the adult population. Dignity is a construct characterized by the representation of the self, of the self from others' point of view, and of the interaction of the individual with the environment and social context. Living with a chronic illness can threaten experiences of dignity for the sick person and their families. Various studies have demonstrated the direct impact of the disease on dignity in terms of physical and psychological symptoms and loss of function. Some efforts have been made to operationalize the concept of perceived dignity in the context of chronic diseases The perceived dignity of patients and the distress related to the feeling of loss of dignity (DRFLD) are outcomes that the patient can report and that the doctors can evaluate to be incorporated into the considerations of comprehensive care. Both outcomes are closely related, perceived dignity refers to a complex phenomenon, while distress related to the feeling of loss of dignity identifies those patients with a perceived dignity compromise of such magnitude that it generates anguish.

Detailed description

The Patient Dignity Inventory (PDI) is an instrument originally written in English made up of 25 items integrated into 5 factors that include: symptoms, existential anguish, dependency, peace of mind and social support. Has a Likert-type response system with a 5-point scale, ranging from 1 ''not a problem'' to 5 ''very serious problem; higher scores indicate greater dignity-related distress. The PDI has been translated and validated into different languages, including validation in Spanish. The PDI instrument was validated in Mexico by Rodríguez-Mayoral et al., in 290 cancer patients. It had very good reliability with an alpha of 0.95 and a 4-factor structure that explained 64% of the variance (loss of meaning in life, loss of autonomy, dependency, and social support). The primary objective of the study is the association between the presence of distress related to the feeling of loss of dignity and quality of life in patients with RD

Interventions

OTHERThe Patient Dignity Inventory instrument (PDI)

The PDI is an instrument made up of 25 items integrated into 5 factors that include: symptoms, existential anguish, dependency, peace of mind, and social support, prior to its application, adaptation, and validation will performer

OTHERWHOQOL-BREF (quality of life) instrument

The WHOQOL-BREF is a self-report questionnaire which assesses 4 domains of quality of life (QOL): physical health, psychological health, social relationships, and environment, it consists of 24 items.

Sponsors

National Institute of Medical Sciences and Nutrition, Salvador Zubiran
Lead SponsorOTHER

Study design

Observational model
OTHER
Time perspective
CROSS_SECTIONAL

Eligibility

Sex/Gender
ALL
Age
18 Years to 99 Years
Healthy volunteers
No

Inclusion criteria

* Patients with a rheumatic disease diagnosis according to their primary rheumatologist who agree to participate

Exclusion criteria

* Patients with a not confirmed rheumatic disease

Design outcomes

Primary

MeasureTime frameDescription
Determine the prevalence (percentage) of the presence of distress related to the feeling of loss of dignity in patients with RDBaseline (At study inclusion)Determine the prevalence (percentage) of the presence of distress related to the feeling of loss of dignity in patients with RD, using PDI (distress related to the feeling of loss of dignity) instrument

Secondary

MeasureTime frameDescription
Determine the quality of life in patients with RD, using WHOQOL-BREF (quality of life) instrumentBaseline (At study inclusion)Determine the quality of life in patients with RD, using WHOQOL-BREF (quality of life) instrument

Countries

Mexico

Contacts

Primary ContactVirgina MD Pascual-Ramos
virtichu@gmail.com525555734111

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026