A feasibility study of an online support programme to help South Asian people newly diagnosed with rheumatoid arthritis manage their condition
| ISRCTN | ISRCTN65320670 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN65320670 |
| Integrated Research Application System (IRAS) | 356140 |
| Central Portfolio Management System (CPMS) | 69268 |
| National Institute for Health and Care Research (NIHR) | 208620 |
| Sponsor | University of Birmingham |
| Funder | National Institute for Health and Care Research |
- Submission date
- 02/06/2026
- Registration date
- 18/06/2026
- Last edited
- 18/06/2026
- Recruitment status
- Recruiting
- Overall study status
- Ongoing
- Condition category
- Musculoskeletal Diseases
Plain English summary of protocol
Background and study aims
Research shows that people from South Asian backgrounds are diagnosed with immune-mediated diseases, including rheumatoid arthritis (RA), much earlier than White individuals—sometimes up to 30 years earlier. The median age of RA diagnosis is 45–48 years in South Asian communities, compared to 56 years for White individuals. This early onset often occurs when people are juggling busy careers and family responsibilities, making effective self-management crucial. Unfortunately, South Asian patients, especially non-English speakers, often experience worse health outcomes and find it harder to manage their condition due to language and cultural barriers.
Most educational resources for managing RA are only available in English, limiting access for non-English speakers. With the NHS increasingly offering remote appointments and self-initiated follow-ups, there is an urgent need for culturally and linguistically tailored support.
Apni Jung (meaning "Our Fight") against RA is a culturally tailored, online educational programme designed specifically for South Asian people with RA. It aims to improve understanding of RA and support better self-management of the condition. The programme is delivered in an accessible, culturally relevant format, helping people gain the knowledge and confidence to manage their health effectively. www.nras.org.uk/apnijung
This study aims to test the best ways to recruit and retain participants for a future large trial, to measure how well the Apni Jung programme is received and whether it meets the needs of South Asian people with RA, and to ensure the study design avoids any cross-contamination between the groups receiving usual care and those using Apni Jung.
Who can participate?
Patients aged 18 years and over from South Asian backgrounds who were diagnosed with rheumatoid arthritis (RA) within a year ane who speak Hindi, Punjabi, or Urdu
What does the study involve?
Participants are recruited from early arthritis clinics at six hospitals and are randomly assigned to receive either usual care or usual care plus the Apni Jung programme – a 2–3-hour online intervention to support RA self-management. We will assess how well people engage with the programme and gather feedback through interviews. We will also measure changes in their RA knowledge, self-management, and healthcare usage using culturally and linguistically appropriate tools.
All participants complete questionnaires at the start of the study and again at 3 months, helped by our bilingual research fellow who speaks Hindi, Punjabi, and Urdu. All participants also keep a weekly diary recording their RA-related healthcare use. Those in the Apni Jung group are asked to use the online programme (around 2–3 hours total) and take part in a telephone interview about their experience. After 3 months, participants in the usual care group are also given access to Apni Jung.
What are the possible benefits and risks of participating?
Participants in both groups will have access to Apni Jung videos in their own language (the usual care group after three months). Their feedback will directly shape improvements to the programme and help make patient education more accessible for the South Asian community. There are no anticipated risks. The main burden is the time taken to complete questionnaires (around 20 minutes at each time point) and, for the Apni Jung group, the interview (around 1 hour at 3 months).
If this study is successful, we will conduct a larger 12-month trial to assess whether Apni Jung can improve clinical outcomes, enhance quality of life, and reduce healthcare usage and work-related impacts. Ultimately, our goal is to reduce health inequalities by empowering South Asian individuals with RA to take control of their condition and improve their overall well-being.
Where is the study run from?
The study is coordinated from the University of Birmingham and runs across six NHS hospital sites in the West Midlands and East Midlands (UK)
When is the study starting and how long is it expected to run for?
January 2026 to December 2027
Who is funding the study?
The National Institute for Health and Care Research (NIHR) Research for Patient Benefit (RfPB) Programme (UK)
Who is the main contact?
Dr Kanta Kumar, k.kumar@bham.ac.uk
Contact information
Public, Scientific
New Cross Hospital, Wednesfield Road
Wolverhampton
WV10 OQP
United Kingdom
| Phone | +44 (0)1902 695065 |
|---|---|
| lorraine.jacques@nhs.net |
Principal investigator, Scientific, Public
University of Birmingham
Vincent Drive
Edgbaston
Birmingham
B15 2TT
United Kingdom
 ORCID ID |
0000-0003-3809-878X |
|---|---|
| Phone | +44 (0)121 414 3344 |
| k.kumar@bham.ac.uk |
Study information
| Primary study design | Interventional |
|---|---|
| Study design | Randomized controlled trial |
| Secondary study design | Randomised controlled trial |
| Participant information sheet | 49632_PIS_UsualCare_02July2025.pdf |
| Scientific title | Improving patient education for people of South Asian origin living with rheumatoid arthritis in England |
| Study objectives | This feasibility study will have three overarching objectives: 1. To assess the feasibility of recruitment strategies, outcome measures, and participant retention required for a future definitive trial of the Apni Jung programme. 2. To evaluate intervention uptake, acceptability, and perceived benefit of Apni Jung among people who speak little or no English with newly diagnosed RA, including the extent to which the programme meets the educational and self-management needs of the target population. 3. To determine whether the proposed study procedures effectively minimise the risk of contamination between study arms. These objectives will be addressed through two primary research questions: 1. Will the proposed study design, recruitment strategies, outcome measures, and retention rates be sufficiently feasible and robust to support progression to a future definitive trial of Apni Jung? 2. What will be the uptake, acceptability, and reported benefit of Apni Jung among people who speak little or no English with newly diagnosed RA? |
| Ethics approval(s) |
Approved 16/07/2025, South Central - Oxford A Research Ethics Committee (2 Redman Place, Stratford, London, E20 1JQ, United Kingdom; -; oxforda.rec@hra.nhs.uk), ref: 25/SC/0217 |
| Health condition(s) or problem(s) studied | Rheumatoid arthritis (RA) |
| Intervention | Standard care (both study arms): All participants will receive standard NHS rheumatology care, including routine early inflammatory arthritis clinic appointments, pharmacological management in accordance with national clinical guidance, and access to standard patient education routinely provided by clinical teams in English. Standard care plus Apni Jung (intervention arm): In addition to standard care, participants allocated to the intervention arm will receive access to the Apni Jung online educational programme (https://www.nras.org.uk/apnijung). The programme requires approximately 2 to 3 hours to complete and is available in Hindi and Punjabi. The content can be understood by those who speak in Urdu too. The content includes understanding RA and its treatment, self-management, medication adherence linked to illness beliefs, pain and fatigue management, flare management, cardiovascular risk reduction, diet, physical activity, and living with RA within South Asian cultural and family contexts. Patient narratives from South Asian individuals living with RA are embedded throughout the programme to enhance cultural relevance, support engagement, motivate and reduce feelings of isolation associated with a new diagnosis. To support engagement with the intervention and optimise fidelity, the research fellow will contact participants in the intervention arm by telephone approximately 1–2 weeks after access has been provided. This contact will confirm programme access, address any practical or technical difficulties, and provide participants with an opportunity to ask questions. Participants who have not yet accessed the programme will be offered additional support to facilitate engagement. No restrictions will be placed on concomitant care or access to other educational or support resources during the study period. Any additional healthcare utilisation or support accessed during the follow-up period will be documented using the healthcare utilisation diary. |
| Intervention type | Behavioural |
| Primary outcome measure(s) |
1. Patient enablement measured using the Patient Enablement Instrument (PEI) at baseline and at 3 months |
| Key secondary outcome measure(s) |
1. Quality of life measured using the EuroQol EQ-5D-5L at baseline and 3 months |
| Completion date | 31/12/2027 |
Eligibility
| Participant type(s) | |
|---|---|
| Age group | Mixed |
| Lower age limit | 18 Years |
| Upper age limit | 100 Years |
| Sex | All |
| Target sample size at registration | 60 |
| Key inclusion criteria | 1. People diagnosed with RA within a year, using the American College of Rheumatology/European League Against Rheumatism 2010 (ACR/EULAR 2010) criteria 2. Adults >=18 years old 3. Ability to communicate in Hindi, Punjabi, or Urdu 4. For usual care: people who have not previously received the Apni Jung programme 5. For usual care plus Apni Jung: access to the internet/phone/YouTube |
| Key exclusion criteria | 1. People from non-South Asian backgrounds 2. Members of the PPI team in this study |
| Date of first enrolment | 30/01/2026 |
| Date of final enrolment | 01/06/2027 |
Locations
Countries of recruitment
- United Kingdom
- England
Study participating centres
Heath Town
Wolverhampton
WV10 0QP
England
Edgbaston
Birmingham
B15 2GW
England
Solihull
B91 2JL
England
Leicester
LE1 5WW
England
Birmingham
B18 7QH
England
West Bromwich
B71 4HJ
England
Results and Publications
| Individual participant data (IPD) Intention to share | Yes |
|---|---|
| IPD sharing plan | The datasets generated and/or analysed during the current study will be available upon request from Dr Kanta Kumar (k.kumar@bham.ac.uk). The data will consist of anonymised questionnaire and interview data. Data will become available following publication of the main study results. Access will be subject to a data sharing agreement. Participant consent was obtained for data sharing in anonymised form. Data will be fully anonymised prior to sharing. There are no ethical or legal restrictions beyond those described above. |
Study outputs
| Output type | Details | Date created | Date added | Peer reviewed? | Patient-facing? |
|---|---|---|---|---|---|
| Participant information sheet | 16/07/2025 | 17/06/2026 | No | Yes | |
| Participant information sheet | version 3 | 16/07/2025 | 17/06/2026 | No | Yes |
| Protocol file | version 2 | 16/07/2025 | 17/06/2026 | No | No |
Additional files
- 49632_Protocol_v2_Jul2025.pdf
- Protocol file
- 49632_PIS_UsualCare_02July2025.pdf
- Participant information sheet
- 49632_PIS_UsualCareApniJung_July2025_V3.pdf
- Participant information sheet
Editorial Notes
02/06/2026: Study's existence confirmed by the NIHR.
