Version: 1.0.0 | Published: 12 Sep 2026 | Updated: 0 days ago
Summary
DOI Name:
10.1186/ISRCTN13833951
Documentation
Associated Media:
Description:
The incidence of lung cancer in never smokers (LCINS) makes up 10-25% of all cases diagnosed globally and is the 8th most prevalent cancer in the UK. It is usually diagnosed at stage 4. The focus of most of the research in this field is the tumour itself, molecular understanding, its clinical detection, treatment and response. This knowledge has changed the treatment landscape and improved survival outcomes. However, there is little research that focuses on what someone with LCINS thinks and feels, perceives and makes sense – their lived experience and that of their carer.
This study aimed to understand what supportive care is needed for people with LCINS by exploring the experiences of people with a diagnosis of LCINS, on and after treatment, and the experiences of their carer, and the staff experiences who provide support to people with LCINS.
We used a phenomenology approach - conducting in-depth, semi-structured interviews with people with LCINS and a significant other. We also recruited a focus group of clinical staff involved with the care and support of people with LCINS including a range of healthcare professionals (HCP) from within and outside of the centre (oncologists, specialist doctors, nurse specialists, radiographers, pain specialists and specialist psychologists).
Results will form a robust evidence base.
Interpretative phenomenological analysis of the collected interviews is ongoing - it is hoped that outcomes may lead to specifically designed interventions as well as potentially changing support structures for patients nationally and internationally.
Coverage
Spatial:
United Kingdom
Typical Age Range:
18-99
Follow Up:
Unknown
Pathway:
Potential (patient) participants were those with LCINS under care at the Royal
Marsden Hospital (no specific biomarkers/treatments). Purposive sampling used to
capture a diversity of experiences from different ages, gender identity, sexual
orientation, relationship status, racial and cultural and socio-economic
backgrounds. The topic guide for the interviews was developed with PPI input and
was sent to the participants prior to interview. Demographic data and clinical
characteristics for patient participants (including date of birth, gender,
ethnicity, diagnosis, date of diagnosis, treatment to date, and performance
status) was gathered with patient permission via EPR. "Significant other" carers
were nominated by the patient participant. Demographic data (including gender
and relationship to patient participant) was self-reported. The focus group of
healthcare professionals was approached through clinical societies. Demographic
data (including gender, professional position, length of time qualified/time in
post) was self-reported.
Provenance
Origin
Purposes:
Study
Sources:
- EPR
- Other
Collection Situations:
Cohort, study, trial
Temporal
Accrual Periodicity:
Static
Start Date:
23 October 2025
End Date:
16 April 2026
Time Lag:
Not applicable
Accessibility
Access
Access Rights:
in progress
Access Service:
Although not required, there is an option to use The Royal Marsden’s Trusted
Research Environment and informatics platform: BRIDgE (Biomedical Research
Informatics Digital Environment). BRIDgE is managed by The Royal Marsden’s
Information Team with support by the NIHR Biomedical Research Centre at The
Royal Marsden and ICR. The aim of the platform is to transform clinical practice
and improve outcomes for patients by enabling researchers to access real-world
cancer data within secure, collaborative, cloud-based workspaces. Learn more by
visiting the BRIDgE site within the NIHR BRC area of The Royal Marsden and ICR
website: https://www.cancerbrc.org/BRIDgE
Access Request Cost:
Depends on type of access. Costing available on application.
Delivery Lead Time:
Variable
Jurisdictions:
UK
Data Controller:
Royal Marsden NHS Foundation Trust
Data Processor:
Royal Marsden NHS Foundation Trust
Usage
Data Use Limitations:
Research-specific restrictions
Data Use Requirements:
- Ethics approval required
- Institution-specific restrictions
- Not for profit use
- User-specific restriction
Resource Creators:
The Royal Marsden NHS Foundation Trust;
The Royal Marsden Cancer Charity;
NIHR Biomedical Research Centre at The Royal Marsden and the ICR;
Ruth Strauss Foundation
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
Participants from single hospital. "Observation date" is date of study closure, actual recruitment was over six month period
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16 April 2026