ArticleJournal of the National Cancer Institute2022
Measuring Clinical, Biological, and Behavioral Variables to Elucidate Trajectories of Patient-Reported Outcomes: The PROFILES Registry.
Article in Journal of the National Cancer Institute, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05371158 (Patient-centered Development and Effectiveness of Online Acceptance and Commitment Therapy for Pain Interference in Cancer Survivors With Persistent Painful Chemotherapy-induced Neuropathy), which is not on this map. Cited by 20 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Patient-centered Development and Effectiveness of Online Acceptance and Commitment Therapy for Pain Interference in Cancer Survivors With Persistent Painful Chemotherapy-induced Neuropathy
Who cites it
20 citing papers in PubMed.
- Sex-, Age-, Lifestyle-, and Comorbidity-Specific Reference Values for Serum Cytokines in the Dutch General Population: Results From the PROFILES Registry.Cancer medicine · 2026Article
- Article
- Patient-reported outcomes in cancer survivorship: insights from two decades of population-based PROFILES registry research.Journal of cancer survivorship : research and practice · 2026Review
- Adding home-use BIA scales, online food diaries, and tape-measures to large-scale questionnaire studies: Insights from the population-based PROFILES registry research.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Article
- ATTITUDE - Addressing attrition in longitudinal cancer cohorts: an in-depth qualitative analysis of experiences and perspectives on participation in longitudinal studies among breast cancer survivors.Breast cancer research and treatment · 2026Observational
- Remote blood collection among cancer patients and age- and sex-matched controls for biomarker and genetic analyses using the PROFILES registry.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2026Review
- Article
- Opportunities and challenges in pooling health-related quality-of-life data for prediction modeling in breast cancer across Europe: lessons from the EORTC BALANCE project.ESMO real world data and digital oncology · 2025Article
- Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants: Narrative Review.Interactive journal of medical research · 2025Review
- Strategies to Reduce Hospital Length of Stay: Evidence and Challenges.Medicina (Kaunas, Lithuania) · 2025Review
- The Impact of Chemotherapy and Body Mass Index on Cancer-Related Fatigue in Colon Cancer Patients: A PROFILES-Registry Study.Cancer medicine · 2025Article
- Development of a prediction model for clinically-relevant fatigue: a multi-cancer approach.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Results of the Dutch scalp cooling registry in 7424 patients: analysis of determinants for scalp cooling efficacy.The oncologist · 2024Article
- Experiences of cancer survivors with chemotherapy-induced peripheral neuropathy in the Netherlands: symptoms, daily limitations, involvement of healthcare professionals, and social support.Journal of cancer survivorship : research and practice · 2024Article
- Article
- Determinants and mediating mechanisms of quality of life and disease-specific symptoms among thyroid cancer patients: the design of the WaTCh study.Thyroid research · 2023Article
- Big Data in Oncology Nursing Research: State of the Science.Seminars in oncology nursing · 2023Review
- Are gastrointestinal problems, nutritional care, and nutritional care needs associated with quality of life in patients with advanced cancer? Results of the observational eQuiPe study.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2023Observational
- Article
- A Narrative Review on the Collection and Use of Electronic Patient-Reported Outcomes in Cancer Survivorship Care with Emphasis on Symptom Monitoring.Current oncology (Toronto, Ont.) · 2022Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
To take cancer survivorship research to the next level, it's important to gain insight in trajectories of changing patient-reported outcomes and impaired recovery after cancer. This is needed as the number of survivors is increasing and a large proportion is confronted with changing health after treatment. Mechanistic research can facilitate the development of personalized risk-stratified follow-up care and tailored interventions to promote healthy cancer survivorship. We describe how these trajectories can be studied by taking the recently extended Dutch population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry as an example. PROFILES combines longitudinal assessment of patient-reported outcomes with novel, ambulatory and objective measures (eg, activity trackers, blood draws, hair samples, online food diaries, online cognitive tests, weighing scales, online symptoms assessment), and cancer registry and pharmacy databases. Furthermore, we discuss methods to optimize the use of a multidomain data collection-like return of individual results to participants, which may improve not only patient empowerment but also long-term cohort retention. Also, advanced statistical methods are needed to handle high-dimensional longitudinal data (with missing values) and provide insight into trajectories of changing patient-reported outcomes after cancer. Our coded data can be used by academic researchers around the world. Registries like PROFILES, which go beyond boundaries of disciplines and institutions, will contribute to better predictions of who will experience changes and why. This is needed to prevent and mitigate long-term and late effects of cancer treatment and to identify new interventions to promote health.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.