PATIENT VOICES Integration of Systematic Assessment of Patient Reported Outcomes Within Clinical Oncology Practice

NCT ID: NCT03968718

Last Updated: 2021-04-28

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

UNKNOWN

Clinical Phase

NA

Total Enrollment

640 participants

Study Classification

INTERVENTIONAL

Study Start Date

2019-05-27

Study Completion Date

2021-12-31

Brief Summary

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Listening to "patient voices" in terms of symptoms, emotional status, satisfaction with care and information received, represents a major shift in medicine. It is in fact crucial in medical decision making and patient empowerment, especially in cancer care.

Patient Reported Outcomes Measures (PROMs) and in particular electronically assessed PROMS (ePROMS), have been identified as potentially effective tools to systematically gather patient voices. Despite international extensive and growing interest, systematic PROM collection is not widely implemented in routine cancer care, due to barriers at various levels.

The PATIENT VOICES is a project aimed at achieving a stepwise inclusion and integration of PROMs within routine clinical practice at the FONDAZIONE IRCCS ISTITUTO NAZIONALE TUMORI-MILANO. Phase I of the Patient Voices project (pilot and feasibility testing), will be the focus of the present study and its results will be the base for subsequent phases (implementation and impact assessment).

Detailed Description

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Study aims of this phase are:

* Assessing the use and attitudes toward PROMs by clinicians in a comprehensive cancer centre.
* Reviewing and compare pre-existing ePROMS assessment systems.
* Developing and pilot testing a flexible system for electronic collection of PROMs.
* Assessing feasibility of ePROM assessment of physical symptoms, psychological distress and patient satisfaction.
* Identifying barriers to and developing strategies for the final implementation and integration of routine ePROMs into the clinical practice.

The project will last 2 years. Longitudinal and cross-sectional studies will be carried out with the aim to evaluate compliance, acceptability, and usability of a routine ePROM assessment system by both patients and clinicians. Participants will be enrolled among patients attending 3 out-patient clinics (physical symptom), 3 inpatient wards (psychological distress) and 5 multidisciplinary teams (patient satisfaction). The Edmonton symptom assessment scale, the Distress Thermometer, and a questionnaire adapted from the Bench-Can and EURACAN projects plus the institutional customer satisfaction survey, will be used in the three studies. Qualitative methods will be used identify patient and clinician related barriers to ePROM assessment and to pinpoint engagement strategies to promote its use in routine cancer care. Semi-structured interviews and focus groups will be carried out.

Quantitative and qualitative studies will respectively enroll 600 and 40 participants.

Conditions

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Neoplasms Symptoms and Signs Psychological Distress Satisfaction, Consumer Quality of Life

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

HEALTH_SERVICES_RESEARCH

Blinding Strategy

NONE

Study Groups

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Systematic ePROMs Assessment

Intervention: The intervention is constituted by a Systematic ePROMs Assessment in routine cancer care in a comprehensive cancer centre.

This will involve preliminary sensitization and training of both clinicians and patients towards the use of ePROMs.

Data filled in by patients through electronic devices will be prompt made available to the clinician during the patient examination.

Group Type EXPERIMENTAL

Systematic ePROMs Assessment

Intervention Type BEHAVIORAL

Depending on the care setting, eligible patients will be asked to fill in one of the following e-PROMs assessment:

Edmonton symptom assessment scale (ESAS-r) (outpatients)

Distress Thermometer (inpatients)

An ad hoc questionnaire adapted from the Bench-Can and EURACAN projects plus the institutional customer satisfaction survey (patients followed by multidisciplinary teams)

Interventions

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Systematic ePROMs Assessment

Depending on the care setting, eligible patients will be asked to fill in one of the following e-PROMs assessment:

Edmonton symptom assessment scale (ESAS-r) (outpatients)

Distress Thermometer (inpatients)

An ad hoc questionnaire adapted from the Bench-Can and EURACAN projects plus the institutional customer satisfaction survey (patients followed by multidisciplinary teams)

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* age 18 years or above
* a verified cancer diagnosis

Exclusion Criteria

* inability to fill in PROMs due to cognitive impairment, psychological disturbance or language problems as judged by the study personnel.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Fondazione IRCCS Istituto Nazionale dei Tumori, Milano

OTHER

Sponsor Role lead

Responsible Party

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Cinzia Brunelli

Principal Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Cinzia Brunelli, PhD

Role: PRINCIPAL_INVESTIGATOR

Fondazione IRCCS Istituto Nazionale Tumori, Milan, Italy

Locations

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Fondazione IRCCS Istituto Nazionale dei Tumori

Milan, Milan, Italy

Site Status RECRUITING

Countries

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Italy

Central Contacts

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Cinzia Brunelli, PhD

Role: CONTACT

+390223903387

References

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Brunelli C, Alfieri S, Zito E, Spelta M, Arba L, Lombi L, Caselli L, Caraceni A, Borreani C, Roli A, Miceli R, Tine' G, Zecca E, Platania M, Procopio G, Nicolai N, Battaglia L, Lozza L, Shkodra M, Massa G, Loiacono D, Apolone G. Patient Voices: Multimethod Study on the Feasibility of Implementing Electronic Patient-Reported Outcome Measures in a Comprehensive Cancer Center. JMIR Cancer. 2025 Jan 22;11:e56625. doi: 10.2196/56625.

Reference Type DERIVED
PMID: 39842002 (View on PubMed)

Brunelli C, Borreani C, Caraceni A, Roli A, Bellazzi M, Lombi L, Zito E, Pellegrini C, Spada P, Kaasa S, Foschi AM, Apolone G; PATIENT VOICES study group. PATIENT VOICES, a project for the integration of the systematic assessment of patient reported outcomes and experiences within a comprehensive cancer center: a protocol for a mixed method feasibility study. Health Qual Life Outcomes. 2020 Jul 28;18(1):252. doi: 10.1186/s12955-020-01501-1.

Reference Type DERIVED
PMID: 32723341 (View on PubMed)

Other Identifiers

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Istitutotumori

Identifier Type: -

Identifier Source: org_study_id

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