ReviewSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer2016
Engaging Patients as Partners in Developing Patient-Reported Outcome Measures in Cancer-A Review of the Literature.
Review in Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 1 of them a synthesis that pooled it.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
11 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Findings from the 2017 Yearbook Section on Health Information Management.Yearbook of medical informatics · 2017Pooled it
- A randomised online experimental study to compare responses to brief and extended surveys of health-related quality of life and psychosocial outcomes among women with breast cancer.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2021Trial
- Exploring patient reported quality of life in lung cancer patients: A qualitative study of patient-reported outcome measures.Asia-Pacific journal of clinical oncology · 2025Article
- Understanding the combined symptom medication score in the light of contexts and mechanisms.PloS one · 2025Article
- Evaluating cancer patient-reported experience measures against health literacy best practices.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2024Article
- Development and Psychometric Validation of Patient-Reported Outcome Measures (PROMs BCC-20) for Assessing Comfort during Chemotherapy in Breast Cancer Patients.Asian Pacific journal of cancer prevention : APJCP · 2023Article
- What matters to patients and clinicians when discussing the impact of cancer medicines on health-related quality of life? Consensus-based mixed methods approach in prostate cancer.Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer · 2022Article
- Personalized outcomes for hip and knee replacement: the patients point of view.Journal of patient-reported outcomes · 2021Article
- We're not all cut from the same cloth: TAILORing treatments for children with chronic conditions.Journal of patient-reported outcomes · 2019Article
- The patient's perspective on blue light flexible cystoscopy: insight from a prospective clinical study.Translational andrology and urology · 2018Article
- Integrated Care Planning for Cancer Patients: A Scoping Review.International journal of integrated care · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeTools to collect patient-reported outcome measures (PROMs) are frequently used in the healthcare setting to collect information that is most meaningful to patients. Due to discordance among how patients and healthcare providers rank symptoms that are considered most meaningful to the patient, engagement of patients in the development of PROMs is extremely important. This review aimed to identify studies that described how patients are involved in the item generation stage of cancer-specific PROM tools developed for cancer patients.
methodsA literature search was conducted using keywords relevant to PROMs, cancer, and patient engagement. A manual search of relevant reference lists was also conducted. Inclusion criteria stipulated that publications must describe patient engagement in the item generation stage of development of cancer-specific PROM tools. Results were excluded if they were duplicate findings or non-English.
resultsThe initial search yielded 230 publications. After removal of duplicates and review of publications, 6 were deemed relevant. Fourteen additional publications were retrieved through a manual search of references from relevant publications. A total of 13 unique PROM tools that included patient input in item generation were identified. The most common method of patient engagement was through qualitative interviews or focus groups.
conclusionsDespite recommendations from international groups and the emphasized importance of incorporating patient feedback in all stages of development of PROMs, few unique tools have incorporated patient input in item generation of cancer-specific tools. Moving forward, a framework of best practices on how to best engage patients in developing PROMs is warranted to support high-quality patient-centered care.
Indexed as
Identifiers
27021391What 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.