Evaluation of a Patient-Reported Symptom Index for NMIBC

NCT ID: NCT03091764

Last Updated: 2021-10-13

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

COMPLETED

Total Enrollment

498 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-07-01

Study Completion Date

2021-08-30

Brief Summary

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This project will develop and evaluate a patient-reported symptom index to assess the impact of treatment for non-muscle invasive bladder cancer on patient burden, toxicity, symptoms and side effects. The symptom index will provide a method for assessing treatments from the patient's perspective; help healthcare professionals make better informed treatment decisions, and provide a method to be able to effectively evaluate treatments for non-muscle invasive bladder cancer.

Detailed Description

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The overarching aim of this research is to develop and evaluate a patient-reported Symptom Index (SI) for individuals with NMIBC (the NMIBC-SI) that is acceptable to patients, reliable, valid and responsive, and fit for purpose in clinical trials and clinical practice.

Specific clinical aims:

* Assess and compare key Patient-Reported Outcomes (PROs) across the full range of contemporary treatments for NMIBC, and over the disease trajectory including acute treatment and 1year survivorship;
* Compare PROs between patients with low, intermediate, and high risk NMIBC.

In field test 1, 200 participants will complete one questionnaire either in hard copy (pencil and paper) or online, at a time that is convenient for the participant. The questionnaire may take up to 20 minutes to complete.

In field test 2, 250 participants will complete quality of life questionnaires at four different time points; 1) before tumour resection, 2) 1 week after resection, 3) 8 weeks after resection, and 4) 1 year after resection. The questionnaires can be completed in the clinic or at home, either in hard copy (pencil and paper) or online, at a time that is convenient for the participant but still within the relevant time point. The questionnaires may take up to 30 minutes to complete.

Conditions

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Superficial Bladder Cancer

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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NMIBC Patient High Risk

Any of the following:

* T1 tumours
* CIS (carcinoma in situ)
* Multiple and recurring and large (\>3cm) Ta, G1, G2 tumours (all these conditions must be presented)

(Patients requiring intravesical Bacillus Calmette-Guérin (BCG) (immunotherapy), which starts with 6 week induction treatment and continues with maintenance for 1 to 3 years)

No interventions assigned to this group

NMIBC Patient Intermediate Risk

All cases between High and Low Risk

(Patients requiring intravesical therapy which lasts between 6 weeks to 3 years)

No interventions assigned to this group

NMIBC Patient Low Risk

Primary, solitary, Ta, LG/G1, \<3cm, no CIS

(Patients receiving frequent cystoscopies, possible tumour resections and single instillations of postoperative chemotherapy)

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* diagnosed NMIBC
* Adult (\>18yrs)
* able to read and understand English
* undergoing active treatment (i.e. one week after tumour resection or intravesical therapy) or completed final treatment for NMIBC within the last week


* newly diagnosed NMIBC
* Adult (\>18yrs)
* able to read and understand English
* after imaging or flexible cystoscopy, and before active treatment
* either before endoscopic resection, or more than 4 weeks since endoscopic resection, but before active/ongoing treatment

Exclusion Criteria

* unconscious or confused
* have cognitive impairment
* unable to speak, read and/or write in English
* diagnosed with muscle invasive disease
* unable to provide informed consent

Field test 2:


* unconscious or confused
* have cognitive impairment
* unable to speak, read and/or write in English
* diagnosed with muscle invasive disease
* unable to provide informed consent
* currently undergoing active treatment for any bladder cancer, or finished treatment within last 3 years.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Australian and New Zealand Urogenital and Prostate Cancer Trials Group

OTHER

Sponsor Role collaborator

Cancer Australia

OTHER

Sponsor Role collaborator

Cancer Council New South Wales

OTHER

Sponsor Role collaborator

University of Sydney

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Manish Patel, MBBS,PhD

Role: PRINCIPAL_INVESTIGATOR

University of Sydney

Locations

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University of Kansas

Kansas City, Kansas, United States

Site Status

University of Minnesota

Minneapolis, Minnesota, United States

Site Status

Mayo Clinic

Rochester, Minnesota, United States

Site Status

Concord Hospital

Concord, New South Wales, Australia

Site Status

Royal North Shore Hospital

St Leonards, New South Wales, Australia

Site Status

Riverina Cancer Care Centre

Wagga Wagga, New South Wales, Australia

Site Status

The Urological Cancer Centre, Westmead Specialist Centre

Westmead, New South Wales, Australia

Site Status

Westmead Hospital

Westmead, New South Wales, Australia

Site Status

Mater Misericordiae Limited

South Brisbane, Queensland, Australia

Site Status

Box Hill Hospital

Box Hill, Victoria, Australia

Site Status

Austin Health

Heidelberg, Victoria, Australia

Site Status

Alfred Health

Melbourne, Victoria, Australia

Site Status

Monash Health

Moorabbin, Victoria, Australia

Site Status

Royal Melbourne Hospital

Parkville, Victoria, Australia

Site Status

Fiona Stanley Hospital

Murdoch, Western Australia, Australia

Site Status

University of British Columbia

Vancouver, British Columbia, Canada

Site Status

Canterbury Urology Research Trust

Christchurch, , New Zealand

Site Status

Tauranga Urology Research

Tauranga, , New Zealand

Site Status

Salford Royal NHS Foundation Trust

Salford, Manchester, United Kingdom

Site Status

Countries

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United States Australia Canada New Zealand United Kingdom

References

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Rutherford C, King MT, Smith DP, Costa DS, Tait MA, Patel MI; NMIBC-SI Working Group. Psychometric Evaluation of a Patient-Reported Symptom Index for Nonmuscle Invasive Bladder Cancer: Field Testing Protocol. JMIR Res Protoc. 2017 Nov 8;6(11):e216. doi: 10.2196/resprot.8761.

Reference Type BACKGROUND
PMID: 29117930 (View on PubMed)

Other Identifiers

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APP1103036

Identifier Type: -

Identifier Source: org_study_id