NDLI: Development of a generic decision guide for patients in oncology: a qualitative interview study

Content Provider	Springer Nature : BioMed Central
Author	Schilling, Lia Kaden, Jana Bán, Isabel Berger-Höger, Birte
Abstract	Background Many patients with cancer want to be involved in healthcare decisions. For adequate participation, awareness of one’s own desires and preferences and sufficient knowledge about medical measures are indispensable. In order to support patient participation, a decision guide for patients with cancer was developed as part of a larger project called TARGET, which specifically aims to improve the care of patients with rare cancer. Methods The development of the decision guide took place from 08.2022 to 03.2023. The decision guide is a single component of a complex intervention that aims to facilitate decision support in cancer care for patients. For the development, existing development and evaluation studies of Question Prompt Lists (QPLs) were identified through systematic literature searches in the MEDLINE via PubMed, PsycInfo, and CINAHL databases. The decision guide was pre-tested for feasibility, usability, completeness and acceptance with the target groups through guided individual interviews. Sociodemographic data were collected anonymously. An expert review was conducted. The verbatim transcribed interviews were analysed using content analysis according to Kuckartz with MAXQDA. The guide has been iteratively optimized based on the results. Results A generic decision guide for patients with cancer for diagnostic or treatment decisions was developed in both PDF web-based formats, based on the Ottawa Personal Decision Guide. It was supplemented with decision-related questions from QPLs for patients with cancer. The pre-test comprised seven expert reviews of (psych)oncologists and experts in evidence-based health information and ten interviews with cancer patients (n = 7), family relatives (n = 2), and one caregiver. The results were coded into nine main categories. The results indicated a good feasibility, usability and acceptability of the guide. The tool was perceived as comprehensive and appropriate. Individual elements were identified as modifiable for better comprehensibility. The target audience appreciated the decision guide as a good support option. Conclusion The decision guide is potentially a useful support option for patients with cancer facing medical decisions in their further course of treatment. In the TARGET project, it will be made available to patients and can be supplemented with decision coaching. Further steps for implementation into healthcare structures are necessary. Clinical trial number Not applicable.
Related Links	https://bmcmedinformdecismak.biomedcentral.com/counter/pdf/10.1186/s12911-025-02960-6.pdf
Ending Page	12
Page Count	12
Starting Page	1
File Format	HTM / HTML
ISSN	14726947
DOI	10.1186/s12911-025-02960-6
Journal	BMC Medical Informatics and Decision Making
Issue Number	1
Volume Number	25
Language	English
Publisher	BioMed Central
Publisher Date	2025-03-10
Access Restriction	Open
Subject Keyword	Health Informatics Information Systems and Communication Service Management of Computing and Information Systems Shared decision-making Decision support interventions Oncology Patient participation Informed choice Guidance
Content Type	Text
Resource Type	Article
Subject	Health Informatics Computer Science Applications Health Policy
Journal Impact Factor	3.3/2023
5-Year Journal Impact Factor	3.9/2023

Sl.	Authority	Responsibilities	Communication Details
1	Ministry of Education (GoI), Department of Higher Education	Sanctioning Authority	https://www.education.gov.in/ict-initiatives
2	Indian Institute of Technology Kharagpur	Host Institute of the Project: The host institute of the project is responsible for providing infrastructure support and hosting the project	https://www.iitkgp.ac.in
3	National Digital Library of India Office, Indian Institute of Technology Kharagpur	The administrative and infrastructural headquarters of the project	Dr. B. Sutradhar bsutra@ndl.gov.in
4	Project PI / Joint PI	Principal Investigator and Joint Principal Investigators of the project	Dr. B. Sutradhar bsutra@ndl.gov.in Prof. Saswat Chakrabarti will be added soon
5	Website/Portal (Helpdesk)	Queries regarding NDLI and its services	support@ndl.gov.in
6	Contents and Copyright Issues	Queries related to content curation and copyright issues	content@ndl.gov.in
7	National Digital Library of India Club (NDLI Club)	Queries related to NDLI Club formation, support, user awareness program, seminar/symposium, collaboration, social media, promotion, and outreach	clubsupport@ndl.gov.in
8	Digital Preservation Centre (DPC)	Assistance with digitizing and archiving copyright-free printed books	dpc@ndl.gov.in
9	IDR Setup or Support	Queries related to establishment and support of Institutional Digital Repository (IDR) and IDR workshops	idr@ndl.gov.in

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