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"It's very important that you measure throughout that journey…": patient perspectives towards quality-of-life data collection following haematopoietic cell transplant.

作者信息

Pugh Gemma, Young Lauren, Yiallouridou Christina, Hart Dawn, Dean Karen, Danby Robert

机构信息

Anthony Nolan, 2 Heathgate Pl, London, NW3 2NU, United Kingdom.

Oxford University Hospitals NHS Foundation Trust, Oxford, United Kingdom.

出版信息

BMC Cancer. 2025 May 13;25(1):864. doi: 10.1186/s12885-025-14269-8.


DOI:10.1186/s12885-025-14269-8
PMID:40355810
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12070728/
Abstract

BACKGROUND: There is increasing interest in using Patient Reported Outcome Measures (PROMs) to provide evidence of how a haematopoietic stem cell transplant (HCT) affects blood cancer patients' long-term quality-of-life (QoL). The purpose of this qualitative study was to explore patients' opinions on what QoL data should be collected post-transplant, when this data should be collected, the use of this data beyond research, and how this data should be captured. METHODS: Twenty-one HCT patients with median age of 45 years (range: 26-71 years) took part in a semi-structured interview. Two commonly used PROMs, the Functional Assessment Cancer Therapy - Bone Marrow Transplant (FACT-BMT) and Patient Reported Outcome Measurement Information System (PROMIS-29) were used as discussion prompts. All interviews were audio recorded, transcribed verbatim and analysed in NVivo using thematic analysis. A Patient Advisory Group (PAG) (n = 6 patients) co-designed the study and were involved in reviewing the coding framework and findings generated. RESULTS: Patients expressed a strong preference for QoL data to be collected which is transplant specific and routinely captured over time. They felt QoL measurement could enable identification of post-transplant concerns, facilitate communication with health professionals, and facilitate access to personalised support. Many patients described being oblivious to the potential long-term implications of HCT and felt it would be reassuring to know the 'typical' trajectory of HCT recovery from patient outcome data collected > 100 days post-transplant. Patients were positive about electronic data capture but did acknowledge that depending on age, digital literacy, and access to electronic devices, a one-size-fits-all approach to QoL data collection would not suit all patients. Additional barriers to QoL measurement included the poor relevance and utility of the individual questionnaire items and concerns about whether PROMs were sensitive enough to capture day to day variation in wellbeing post-transplant. CONCLUSIONS: Findings indicate patients are supportive of QoL data capture specific to transplant and feel such data could be used to support individual self-monitoring and post-transplant recovery. Patients feel that data should be collected routinely on a long-term basis via electronic methods.

摘要
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7cc1/12070728/e80f1869de85/12885_2025_14269_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7cc1/12070728/e80f1869de85/12885_2025_14269_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/7cc1/12070728/e80f1869de85/12885_2025_14269_Fig1_HTML.jpg

相似文献

[1]
"It's very important that you measure throughout that journey…": patient perspectives towards quality-of-life data collection following haematopoietic cell transplant.

BMC Cancer. 2025-5-13

[2]
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[3]
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[4]
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[5]
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[6]
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[7]
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[8]
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[9]
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[10]
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本文引用的文献

[1]
Facilitators and barriers to implementing electronic patient-reported outcome and experience measures in a health care setting: a systematic review.

J Patient Rep Outcomes. 2023-2-14

[2]
Essential barriers and considerations for the implementation of electronic patient-reported outcome (ePRO) measures in oncological practice: contextualizing the results of a feasibility study with existing literature.

Z Gesundh Wiss. 2022-10-28

[3]
Adding Centralized Electronic Patient-Reported Outcome Data Collection to an Established International Clinical Outcomes Registry.

Transplant Cell Ther. 2022-2

[4]
Patient-reported outcome measures (PROMs) as proof of treatment efficacy.

BMJ Evid Based Med. 2022-6

[5]
Patient-Reported Outcomes as Independent Prognostic Factors for Survival in Oncology: Systematic Review and Meta-Analysis.

Value Health. 2021-2

[6]
Benefits and Disadvantages of Electronic Patient-reported Outcome Measures: Systematic Review.

JMIR Perioper Med. 2020-4-3

[7]
A review of the barriers to using Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) in routine cancer care.

J Med Radiat Sci. 2021-6

[8]
Patient-reported outcomes in acute graft-versus-host disease: optimizing patient care and clinical trial endpoints.

Bone Marrow Transplant. 2020-8

[9]
Current state of quality of life and patient-reported outcomes research.

Eur J Cancer. 2019-9-24

[10]
"I Am Sure That They Use My PROM Data for Something Important." A Qualitative Study About Patients' Experiences From a Hematologic Outpatient Clinic.

Cancer Nurs. 2020

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