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/33729634/Actively Recruiting
Led by Brigitta Rasmussen Villumsen · Updated on 2026-04-01
105
Participants Needed
3
Research Sites
N/A
Total Duration
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
Patient-partnered Research in Investigating Fear of Cancer Recurrence in Kidney Cancer
B
Brigitta R Villumsen, PhD
A
Anne H Nielsen, PhD
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Brigitta Rasmussen Villumsen
Lead Sponsor
Aarhus University Hospital
Collaborating Sponsor
You may qualify if you...
You will not qualify if you...
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (in-person or online)
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
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
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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https://pubmed.ncbi.nlm.nih.gov/18414902/Brigitta Rasmussen Villumsen
Lead Sponsor
Aarhus University Hospital
Collaborating Sponsor