Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement.
Clayon B Hamilton, Alison M Hoens, Annette M McKinnon...
https://pubmed.ncbi.nlm.nih.gov/33729634Actively Recruiting
All Genders
Healthy Volunteers
ID07234656
Patient-partnered Research: a Key to Investigating Fear of Cancer Recurrence in Patients With Surgically Treated Kidney Cancer (PP-RECURK)
Led by Brigitta Rasmussen Villumsen · Updated on 2026-04-01
105
Participants Needed
3
Research Sites
N/A
Total Duration
On this page
Sponsors
B
Brigitta Rasmussen Villumsen
Lead Sponsor
A
Aarhus University Hospital
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are investigating Fear of Cancer Recurrence (FCR) in patients with renal cell carcinoma (RCC) who have undergone surgery, as well as their partners or spouses. The study aims to involve patients and partners in identifying the most relevant FCR topics, timing, and methods for assessing FCR during follow-up care. This observational study seeks to give patients and their families a voice in shaping how psychological concerns are addressed after kidney cancer surgery. The study has two phases. In phase 1, a panel of patients and partners will collaborate with researchers to develop recommendations for FCR questions, modes of administration, and timing for follow-up care assessments. In phase 2, these recommendations will be tested in a pilot feasibility study where patients and partners will answer FCR questions at specific timepoints defined during phase 1. The Fear of Cancer Inventory will serve as a guide for developing the questions. Participants will be involved through online or in-person meetings in phase 1 and will complete questionnaires in phase 2. Researchers will evaluate how well patients and partners are engaged, the feasibility of the recommendations, and the prevalence of FCR among patients and partners over up to 52 weeks. Additional factors like disease stage, age, sex, and comorbidities will also be studied to understand their relationship with FCR. The total study duration allows for follow-up and statistical evaluation of these factors.
CONDITIONS
Brief Title
Patient-partnered Research in Investigating Fear of Cancer Recurrence in Kidney Cancer
Who Can Participate
All Genders
Healthy Volunteers
Eligibility Criteria
You may qualify if you...
- Single patients diagnosed with Renal Cell Carcinoma (RCC) or patients with RCC in an intimate relationship with a partner/spouse
- Partners/spouses of patients who meet the inclusion criteria
- Patients who have undergone surgery for localized RCC (T1-T2-T3 tumor)
- Time since surgery between 0 and 120 months (phase 1)
- Danish speaking patients and partners/spouses able to speak, write, and read Danish
- Patients and partners/spouses willing and able to attend online meetings or in person at Gødstrup Hospital (phase 1)
- Able to receive digital communication from the hospital (phase 2)
- Informed consent must be signed before answering Fear of Cancer Recurrence questions (phase 2)
You will not qualify if you...
- Diagnosed with cognitive impairment
- Untreated psychiatric disorders due to non-compliance
- Patients and partners/spouses who participated as panelists in phase 1 (phase 2 only)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or online)
Phase 1: Patient-partner panel collaboration
Duration - Up to 26 weeks
Participants form a patient-partner panel collaborating with researchers to develop recommendations for investigating Fear of Cancer Recurrence in follow-up care after kidney cancer surgery.
Regular online or in-person meetings throughout the period
Phase 2: Feasibility testing and fear of cancer recurrence investigation
Duration - Up to 52 weeks
Participants complete Fear of Cancer Recurrence assessments using the recommendations developed in Phase 1 to test feasibility and investigate prevalence and factors associated with Fear of Cancer Recurrence.
Periodic assessments during the study period
Trial Site Locations
Total: 3 locations
1
Aalborg University Hospital
Aalborg, Denmark, 9000
Actively Recruiting
2
Aarhus University Hospital
Aarhus, Denmark, 8200
Actively Recruiting
3
Gødstrup Hospital
Herning, Denmark, 7400
Actively Recruiting
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Research Team
B
Brigitta R Villumsen, PhD
A
Anne H Nielsen, PhD
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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Cristiane Decat Bergerot, Dena Battle, Errol J Philip...
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