Transforming supportive care for people living with lung cancer when you have never smoked
| ISRCTN | ISRCTN13833951 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN13833951 |
| IRAS number | 356843 |
| Secondary identifying numbers | CCR6208 |
- Submission date
- 16/10/2025
- Registration date
- 29/10/2025
- Last edited
- 21/10/2025
- Recruitment status
- Recruiting
- Overall study status
- Ongoing
- Condition category
- Cancer
Plain English summary of protocol
Background and study aims
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 aims to understand what supportive care is needed for people with LCINS. The study objectives are to explore 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.
Who can participate?
Adult patients with a diagnosis of LCINS at any stage.
What does the study involve?
The study team will ask people with LCINS having treatment if they wish to take part in a one-to-one interview. They will be asked to nominate someone who they see as their carer or significant support person who is also willing to be interviewed. Up to 20 people are expected to be interviewed, and the same number of carers will be separately interviewed. Staff (n=6-10) involved in the care of people with LCINS will be asked to take part in a focus group.
The interviews and focus group will, with permission, be audio recorded and transcribed. Data is analysed using a research method specifically designed to make sense of the experiences of a small group of people through in-depth interviewing. People with experience of cancer/treatment will be asked to help further develop the research before the start, to ensure it is easy for people with LCINS to understand and take part in.
What are the possible benefits and risks of participating?
The anticipated findings are expected to provide a greater understanding of the experiences of people with LCINS and their carers and to help us develop a support package specific to their needs. Following the analysis, a stakeholder event will be hosted to discuss and identify the right actions to take moving forward, inviting people from the charity, participants, clinical staff and researchers. The findings will be published.
There is a chance that some of the questions might be upsetting. The interview might bring back difficult memories for participants. If this happens, participants can stop at any point. The researcher can offer information about support available within the hospital from the clinical team.
If there are any concerns raised during the interview, the researcher will ask permission to ask a member of the clinical team to contact participants directly.
Where is the study run from?
The Royal Marsden NHS Foundation Trust, UK
When is the study starting and how long is it expected to run for?
April 2025 to March 2026.
Who is funding the study?
The Ruth Strauss Foundation, UK
Who is the main contact?
Prof Susanne Cruickshank - Strategic Lead for Health Services Research, and Geraldine.O'Gara@rmh.nhs.uk - Nurse Researcher
Contact information
Public, Scientific, Principal investigator
C/O Executive Office
2nd Floor, Mulberry House
Royal Marsden NHS Foundation Trust
Fulham Road
London
SW3 6JJ
United Kingdom
 ORCID ID |
0000-0003-0204-4739 |
|---|---|
| Phone | +44 (0)207 35208171 x 8516 |
| Susanne.Cruickshank@rmh.nhs.uk |
Public, Scientific
C/O Executive Office
2nd Floor Mulberry House
Royal Marsden NHS Foundation Trust
Fulham Road
London
SW3 6JJ
United Kingdom
| ORCID ID |
0000-0002-7037-8215 |
|---|---|
| Phone | +44 (0)207 352 8171 x 4559 |
| Geraldine.O'Gara@rmh.nhs.uk |
Study information
| Study design | A qualitative explorative study |
|---|---|
| Primary study design | Observational |
| Secondary study design | Qualitative phenomenology approach |
| Study setting(s) | Hospital, Internet/virtual, Medical and other records, Telephone |
| Study type | Quality of life |
| Participant information sheet | Not available in web format, please use the contact details to request a participant information sheet |
| Scientific title | Transforming supportive care for people living with lung cancer when you have never smoked |
| Study acronym | LIVING |
| Study objectives | Primary objectives: 1. Explore the experiences of living with a diagnosis of lung cancer who have never smoked (LCINS) 2. Explore the experiences of the support and care that having LCINS may require or need 3. Explore how life has changed since diagnosis with LCINS and during different treatments 4. Explore the family experiences of having a family member with LCINS Secondary objective: Explore the experiences of clinical staff in providing support to people with LCINS. |
| Ethics approval(s) |
Approved 09/09/2025, Leeds East Research Ethics Committee (2 Redman Place, Stratford, London, E20 1JQ, United Kingdom; +44 (0)207 104 8012; leedseast.rec@hra.nhs.uk), ref: 25/YH/0178 |
| Health condition(s) or problem(s) studied | Lung cancer in people who have never smoked (LCINS). |
| Intervention | A qualitative, explorative study using purposive sampling and a phenomenology approach. The study team will conduct in-depth, semi-structured interviews with people with LCINS (n=up to 20) and a significant other (n=up to 20). The person with LCINS will nominate a significant other. The interviews will take place face-to-face within a quiet, private room in the hospital, or can be facilitated via an online platform such as TEAMS, or via phone, depending on participant choice/convenience. Interviews with the LCINS patients will be carried out first, then separately with their significant other (i.e. family member or close friend). A focus group with clinical staff involved with the care and support of people with LCINS will be offered through the clinical societies (n=6-10). The study will seek to recruit different healthcare professionals (HCP) from within and outside of the centre to gather experiences of providing supportive care to this group, such as oncologists, specialist doctors, nurse specialists, radiographers, pain specialists and specialist psychologists. It will be conducted online via TEAMS. Completion of interpretative phenomenological analysis of data from interviews with people with LCINS. We anticipate that our findings will give us a greater understanding of the experiences of people with LCINS and their family members/significant others and inform the local development of a support package specific to their needs. Findings will also feed into local business cases and psychological care services to enable better support for this unique patient group. Outcomes may also lead to specifically designed interventions. Results will form a robust evidence base and will have the potential to change support structures for patients nationally and internationally. |
| Intervention type | Other |
| Primary outcome measure | A greater understanding of the experiences of people with LCINS and their family members/significant others to inform the local development of a support package specific to their needs will be assessed by the completion of interpretative phenomenological analysis of data from interviews with people with LCINS during the study |
| Secondary outcome measures | A greater understanding of the experiences of people with LCINS and their family members/significant others will be assessed by the completion of interpretative phenomenological analysis of data from focus groups with staff who support people with LCINS and their significant others during the study |
| Overall study start date | 09/04/2025 |
| Completion date | 31/03/2026 |
Eligibility
| Participant type(s) | Patient, Health professional, Employee |
|---|---|
| Age group | Mixed |
| Lower age limit | 18 Years |
| Upper age limit | 99 Years |
| Sex | All |
| Target number of participants | 50 |
| Key inclusion criteria | People with LCINS interviews: 1. People with a diagnosis of LCINS at any stage 2. Aged 18 or over 3. Any gender, ethnicity and socio-economic grouping 4. Able to give consent and participate in an interview 5. Nomination and participation of a significant other (see below) is not mandatory to be able to take part Significant other interviews: 1. Nominated as a significant other of a person with LCINS 2. Aged 18 or over 3. Any gender, ethnicity and socio-economic grouping 4. Able to consent and participate in an interview HCP focus group: Involved with the care and support of people with LCINS and their significant others |
| Key exclusion criteria | 1. <18 years old 2. Unable to give consent |
| Date of first enrolment | 01/10/2025 |
| Date of final enrolment | 31/03/2026 |
Locations
Countries of recruitment
- England
- United Kingdom
Study participating centre
London
SW3 6JJ
United Kingdom
Sponsor information
Hospital/treatment centre
203 Fulham Road
London
SW3 6JJ
England
United Kingdom
| Phone | +44 (0)207 352 8171 |
|---|---|
| research.development@rmh.nhs.uk | |
| Website | https://www.royalmarsden.nhs.uk/ |
"ROR" |
https://ror.org/0008wzh48 |
Funders
Funder type
Research organisation
No information available
Results and Publications
| Intention to publish date | 31/03/2027 |
|---|---|
| Individual participant data (IPD) Intention to share | No |
| IPD sharing plan summary | Not expected to be made available |
| Publication and dissemination plan | Planned publication in a peer-reviewed journal |
| IPD sharing plan | The datasets generated during and/or analysed during the current study are not expected to be made available due to the challenges of anonymising qualitative data and the risk of identifying study participants. |
Editorial Notes
16/10/2025: Study's existence confirmed by Health Research Authority (HRA) (UK)
