Exploring Perspectives on Palliative and Supportive Care, to Inform Recommendations to Help People Live Well With Inflammatory Arthritis Throughout the Disease Course (ENRICH)
Conditions: Inflammatory Arthritis, Palliative Care
Sponsor: Dorothy House Hospice

  
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          This protocol has regard for the HRA guidance and order of content.  
 
Exploring perspectives on Palliative and Supportive Care, to inform 
recommendations to help people live well with inflammatory arthritis 
throughout the disease course (ENRICH) 
 
  
SHORT STUDY TITLE / ACRONYM         Palliative and Supportive Care to help people with 
arthritis to live well (ENRICH)  
  
  
PROTOCOL VERSION NUMBER  
Version 2.0   
  
               DATE                17th December 2025 
  
RESEARCH REFERENCE NUMBERS  
   
    
 IRAS Number:    348144  
  
SPONSORS Number:  Dorothy House Hospice  
                     FUNDERS Number:   Arthritis UK 23281  
  
  
 

  
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SIGNATURE PAGE  
The undersigned confirm that the following protocol has been agreed and accepted and that 
the Chief Investigator agrees to conduct the study in compliance with the approved protocol 
and will adhere to the principles outlined in the Declaration of Helsinki, the Sponsor’s SOPs, 
and other regulatory requirement.  
I agree to ensure that the confidential information contained in this document will not be 
used for any other purpose other than the evaluation or conduct of the investigation without 
the prior written consent of the Sponsor  
I also confirm that I will make the findings of the study publicly available through publication 
or other dissemination tools without any unnecessary delay and that an honest accurate and 
transparent account of the study will be given; and that any discrepancies from the study as 
planned in this protocol will be explained.  
  
For and on behalf of the Study Sponsor:  
Signature:                                                                                         Date: 20th November 2025
 
 
 
................................................................  
  
Name (please print):   Wayne de Leeuw 
  
  
Position:  Chief Executive 
  
  
  
Chief Investigator:  
Signature:   
 
Date: 19th November 2025 
......................................................................................................  
  
Name: (please print):    Professor Candy McCabe  
  
    
  
  
  
  
  
  
  
  
  
  

  
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LIST of CONTENTS  
  
GENERAL INFORMATION  
Page No.  
TITLE PAGE   
1 
RESEARCH REFERENCE NUMBERS 
1 
HRA PROTOCOL COMPLIANCE DECLARATION   
2 
SIGNATURE PAGE  
2 
LIST OF CONTENTS   
3 
KEY STUDY CONTACTS  
4  
STUDY SUMMARY  
5  
FUNDING & SUPPORT IN KIND  
5 
ROLE OF SPONSOR AND FUNDER  
5 
ROLES & RESPONSIBILITIES OF STUDY SPONSOR AND  
FUNDER, MANAGEMENT COMMITTEES, GROUPS AND 
INDIVIDUALS  
6 
PROTOCOL CONTRIBUTORS  
6  
KEY WORDS  
6 
STUDY TIMELINE  
6 
STUDY PROTOCOL   
 
1. BACKGROUND & RATIONALE  
7-9 
2. THEORETICAL FRAMEWORK  
9 
3. STUDY AIM, OBJECTIVES, RESEARCH QUESTIONS AND 
OUTCOMES 
10-11 
4. STUDY DESIGN / SAMPLE/ METHODS / ANALYSIS 
11-17 
5. STUDY SETTING 
17 
6. STUDY RECRUITMENT AND WITHDRAWL  
17-18 
7. ETHICAL AND REGULATORY CONSIDERATIONS, PATIENT AND 
PUBLIC INVOLVEMENT, DATA MANAGEMENT 
18-22 
8. DISSEMINATION POLICY  
22 
9. REFERENCES  
24 
10. APPENDIX 
27-28 
  
  

  
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KEY STUDY CONTACTS  
Chief Investigator  
Professor Candy McCabe, Head of Education & Research, 
Dorothy House Hospice Care.   
Email: candy.mccabe@dorothyhouse-hospice.org.uk  
Phone: 01225 722988  
Study Co-ordinator  
Dr Sharon Grieve, Research Development and Delivery 
Lead   
Email: sharon.grieve@dorothyhouse-hospice.org.uk  
Phone: 01225 722988 
 
Sponsor  
Dorothy House Hospice Care, Winsley, Bradford on Avon,  
BA15 2LE   
Email: info@dorothyhouse-hospice.org.uk  
Phone: 01225 722988  
Joint sponsor(s)/cosponsor(s)   None  
Funder(s)  
Arthritis UK Grant no.  23281 
Key Protocol Contributors  
Dr Sharon Grieve, Dorothy House Hospice,  
Winsley, Bradford on Avon, BA15 2LE,   
sharon.grieve@dorothyhouse-hospice.org.uk  
 
Professor Candy McCabe, Dorothy House Hospice,  
Winsley, Bradford on Avon, BA15 2LE,   
Candy.McCabe@dorothyhouse-hospice.org.uk   
 
Dr Alison Llewellyn 
University of the West of England Bristol  
Blackberry Road, Bristol, BS16 1DD  
Alison.Llewellyn@uwe.ac.uk  
 
Dr Mwidimi Ndosi  
University of the West of England Bristol  
Blackberry Road, Bristol, BS16 1DD  
Mwidimi.Ndosi@uwe.ac.uk  
 
  
 
 
 
 
 
 
 
 

  
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STUDY SUMMARY  
  
Study Title  
Exploring perspectives on Palliative and Supportive 
Care, to inform recommendations to help people live 
well with inflammatory arthritis throughout the disease 
course.  
Internal ref. no. (or short title)  ENRICH  
Study Design  
Qualitative and quantitative   
Study Participants  
• 
People living with inflammatory arthritis  
• 
Healthcare practitioners working in Rheumatology, 
Palliative and End of Life Care (PEoLC), Primary 
Care and Community (GPs, district nurses, 
community therapists) 
• 
Representatives from relevant charities and 
organisations  
• 
Commissioners of health and social care services  
Planned Size of Sample (if 
applicable)  
Work-package 1: 15-30 participant interviews 
Work-package 2: minimum of 50 survey responses from 
healthcare practitioners. 
 
Follow up duration (if 
applicable)  
N/A  
Planned Study Period  
20 months 
  
FUNDING AND SUPPORT IN KIND  
FUNDER(S)  
(Names and contact details of ALL 
organisations providing funding and/or 
support in kind for this study)  
FINANCIAL AND NON  
FINANCIALSUPPORT GIVEN  
 Arthritis UK 
Financial support for the costs of conducting 
this project.   
  
  
ROLE OF STUDY SPONSOR AND FUNDER  
The sponsor, Dorothy House Hospice, has overall responsibility for the initiation and 
management of the study. This includes the development of the study design, conduct, data 
analysis and interpretation, any manuscript(s) and other dissemination arising, and any 
decisions regarding any of these aspects of the study.   
The Funder’s terms and conditions-please see Arthritis UK Contracts and Terms and 
Conditions  
  

  
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ROLES AND RESPONSIBILITIES OF STUDY MANAGEMENT COMMITEES/GROUPS & 
INDIVIDUALS  
Prior to commencement of recruitment to the study, and beyond any required HRA/NHS 
ethical approvals, governance approvals will be required from the Bath Swindon and 
Wiltshire (BSW) Research Hub, Dorothy House Research Committee, Dorothy House 
Clinical Governance Committee and Dorothy House Chief Executive Officer.  
Whilst some members of the study team sit on the Dorothy House Research Committee and 
the BSW Research Hub Executive, governance approvals will remain independent of the 
team members involved in the study.  
The study team comprises patient and public representation and representatives from 
across the five collaborating organisations (Dorothy House Hospice; Royal United Hospitals 
NHS Foundation Trust; University of the West of England; University Hospitals Bristol and 
Weston NHS Foundation Trust; Elm Tree Surgery, Shrivenham). 
Dorothy House regularly engages with Patient and Public Contributors via the Hospice User 
Group (HUG). The Research Committee also includes a lay member. We will include two 
patient and public contributors in the study team to provide ongoing input to the conduct of 
the study and to analysis, reporting and dissemination activities.   
A Steering Committee will be formed and include patient and public representation, a 
methodologist relevant to the project design, and healthcare representation from Palliative 
and End of Life care, Rheumatology and Primary care.  
 
PROTOCOL CONTRIBUTORS  
  
Professor Candy McCabe, Head of Education and Research, Dorothy House Hospice, 
Winsley, Bradford on Avon, BA15 2LE   
Dr Sharon Grieve, Research Development and Delivery Lead, Dorothy House Hospice, 
Winsley, Bradford on Avon, BA15 2LE   
Dr Alison Llewellyn, Associate Professor - Clinical Research. University of the West of 
England, Blackberry Road, Bristol, BS16 1DD  
Dr Mwidimi Ndosi, Associate Professor in Rheumatology Nursing, University of the West of 
England, Blackberry Road, Bristol, BS16 1DD 
 
 
  
KEY WORDS: Inflammatory arthritis; palliative care; end of life care; supportive care 
  
  
 
  
STUDY TIMELINE  
 
The study described below will run from January 2026-April 2027. Please see Gantt chart for 
details (Appendix 1) 
 
 
 

  
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STUDY PROTOCOL  
Exploring perspectives on Palliative and Supportive Care, to inform recommendations 
to help people live well with inflammatory arthritis throughout the disease course. 
 
1        BACKGROUND & RATIONALE  
Palliative Care helps people with life-limiting illnesses live as well as possible. It 
focuses on improving quality of life, not just for patients, but also for their families. 
This care looks at the whole person, including physical comfort, emotional wellbeing, 
and spiritual needs.1,2 Palliative care is about helping people live fully, even as they 
approach the end of life.2 It is delivered by a multi-disciplinary team of healthcare 
professionals across many settings like hospitals, care homes, hospices, and a 
person’s home.  
 
The recently updated NHS England Ambitions for Palliative and End of Life Care 
Framework specifies high quality palliative and end of life care should be available to 
anyone with a life limiting illnesses, regardless of their diagnosis.3 Despite this, it is 
most commonly offered to people with cancer, heart disease, lung conditions, and 
AIDS. Inequalities of access are known to exist particularly for people with non-
malignant conditions.4-7 This is especially true for those with multiple long-term 
illnesses, including those with an Inflammatory Arthritis such as: rheumatoid arthritis 
(RA), psoriatic arthritis (PsA), juvenile idiopathic arthritis (JIA), or axial 
spondyloarthritis (axSpA). The high incidence of rheumatic and musculoskeletal 
diseases,8 and associated chronic pain, mean these conditions often comprise one 
or more of the multimorbidity conditions an individual may be living with. 
Palliative care can begin as soon as someone is diagnosed with a life-limiting illness, 
and some hospices provide care from the last 1,000 days of life,9 but in cancer care, 
for example, a broader approach called Palliative and Supportive Care (PSC) is now 
used, with ‘Supportive Care’ being provided much earlier in a person’s disease 
course.10 
 
Palliative and Supportive Care  
PSC aims to support people and those close to them throughout the illness, meeting 
a wide range of needs: physical, emotional, social, spiritual, and cultural.11 Recent 
research has recommended a more inclusive definition of PSC, which would apply to 
anyone with a serious or chronic illness, and not just people with a cancer 
diagnosis.11 For example, PSC is now widely adopted in non-cancer conditions, such 
as cardiac, renal, and neurological diseases. Starting PSC early has been shown to 
improve quality of life, extend survival, and reduce the need for aggressive 
treatments at the end of life.12-14 This approach could also help people with 
inflammatory arthritis live better, more comfortable lives.  
 
Inflammatory Arthritis   
These conditions can cause long-term pain, stiffness, fatigue, and disability.15 They 
may also affect other parts of the body, like the lungs, skin, eyes, and bowel.16-19 
These secondary complications, and the side effects of medications used to help 

  
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slow the progression of the disease or improve symptoms, can shorten life 
expectancy, for example, people with Rheumatoid Arthritis and associated lung 
disease may live only 3–7 years after diagnosis.20,21 Fatigue, depression, and 
anxiety are common and can deeply affect daily life, work, and relationships.22,23,24 
Managing medications and unpredictable flare-ups of the condition adds to the 
emotional strain.25 Having a chronic inflammatory condition treated with 
glucocorticoids, immunosuppressants and biological medications can also increase 
the risk of secondary co-morbidities including cardiovascular disease, diabetes, 
hypertension, risk of infections and malignancies.26-28 
 
Experts suggest that even outside of end-of-life care, people with arthritis could 
benefit from support that combines Rheumatology and Palliative Care.29 However, 
current guidelines for healthcare professionals does not include arthritis when 
helping doctors identify who might need end-of-life care.30 No guidelines currently 
exist for Palliative Care teams on how to support people with arthritis, which can 
leave patients feeling their arthritis is overlooked or misunderstood.  
 
Inflammatory arthritis and the potential need for palliative and supportive care.   
care.   
In preparation for this study, we conducted focus groups with people living with an 
inflammatory arthritis, all of whom had experience of palliative and end of life care 
through their life experiences (n=11). They told us they often do not mention arthritis 
symptoms when receiving palliative and end of life care in a hospice setting, 
because they assume healthcare professionals already understand the impact of 
their arthritis, or they are used to living with the pain and believe it is more important 
to tell hospice staff about the pain related to their palliative diagnosis. Palliative care 
professionals confirmed this, saying their focus tends to be on the most life-
threatening condition. Furthermore, they described having limited knowledge about 
inflammatory arthritis and its impact on the individual.   
In conversations with people living with inflammatory arthritis, many said they had 
faced moments when extra help would have made a big difference. When they learnt 
more about PSC, they thought this type of care would be of significant help to them. 
One woman described how her arthritis symptoms were so severe early on in her 
diagnosis that her children had to help her with basic tasks like dressing and eating. 
Focus group participants also spoke about future challenges they might face, 
especially near the end of life. They worried about pain from being unable to move, 
side effects from medications, and wanted to have conversations in advance about 
treatment options and comfort care.   
 
Rheumatologists and palliative care teams told us they had limited knowledge about 
each other’s specialities, which could lead to uncertainty about the optimum care for 
people with an inflammatory arthritis towards the end of life.  For example, should 
arthritis medications be stopped or continued near the end of life? When should 
conversations about end-of-life care begin in Rheumatology practice? Despite these 
challenges, rheumatology and palliative care have a similar approach to care, that it 
is holistic, person centred and aimed at maximising quality of life. Rheumatology and 
Palliative Care healthcare professionals told us our work could encourage closer 
working between the two Specialities, as well as improve care for those with 
inflammatory arthritis. For example, “there’s a lot of overlap of those symptoms (pain, 
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than looking a bit wider to the things we don't know so well” (Palliative Care 
Clinician).  
General Practitioners and Community healthcare professionals told us it was 
important for us to also include them in our work as they care for many people 
towards the end of life. They would welcome guidance on inflammatory arthritis and 
PSC, especially on the management of medications.   
 
Current evidence   
We conducted a rapid literature review at the outset of this study (parameters: 
English language; 2014-present; ‘arthritis’; ‘spondylitis’; ‘ankylosing’; ‘ankylosing 
spondylitis’; ‘Palliative Care’) looking for any study design that described the 
interaction between Rheumatology and Palliative Care, patient and/or health care 
professionals’ perspectives on potential Palliative Care need. Only three relevant 
papers were identified.29,31,32 One was an opinion piece32 and two explored routine 
clinical data,29,31 which demonstrated symptoms in rheumatology patients that could 
be met by palliative care services. No qualitative research was identified, and 
nothing that described the patients’ or healthcare professionals’ perspectives in 
either Speciality. Of note, in 2008, the dearth of literature in this area was highlighted 
in the Journal of Palliative Care with the authors concluding that rheumatologists, 
palliative and primary care physicians should become more aware of patients with 
rheumatic diseases to offer them the care they need.33 
 
Focus and study population 
As described, we have consulted widely with people with inflammatory arthritis, 
rheumatology, palliative care, primary and community healthcare professionals. They 
confirmed this is an important topic to investigate. They encouraged us to  
explore the potential value of Supportive Care, in addition to Palliative Care, as 
although not widely available outside of cancer services, the similarities in personal 
health and emotional challenges for Rheumatology patients may mean it is highly 
appropriate.  
This study focuses on four common types of inflammatory arthritis:  
•  Rheumatoid Arthritis (RA)  
•  Psoriatic Arthritis (PsA)  
•  Juvenile Idiopathic Arthritis (JIA)  
•  Axial Spondyloarthritis (axSpa)  
These conditions often involve similar symptoms, treatments, and related health 
issues. While there are other rare, life-threatening rheumatic diseases,34-37 this study 
concentrates on the more common ones to better understand how Supportive and 
Palliative Care could help throughout a person’s life.  
 
2  
THEORETICAL FRAMEWORK  
This project comprises three discrete and iterative work-packages (WP). Qualitative 
methods have been selected for work-package 1 (WP1) which explores with people 
living with an inflammatory arthritis, what their understanding and perspectives are of 
PSC, and how PSC may support them to live well. Semi-structured interviews are 
the optimal method to explore a topic where little prior knowledge exists, and in the 
context of the lived experience.38 Semi-structured interviews allow for core topics to 
be raised for discussion but give scope for participants to raise unanticipated issues; 
the use of a topic guide facilitates the discussion but the precise wording and order 
of questions is contextual and responsive to the participant’s account.38  

  
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Work-package 2 (WP2) aims to explore (1) Rheumatology, General Practice and 
Community healthcare professionals’ (HCP) views on PSC, and (2) Palliative Care 
HCPs’ views on Inflammatory Arthritis and Supportive Care, how they currently 
collaborate, and how PSC may help people with Inflammatory arthritis to live well. As 
this work seeks to capture a large volume of data from a range of different 
populations at a single time point, then a survey format is appropriate. The majority 
of the survey data will be quantitative to ensure forced choice responses for clarity of 
data, and ease of data analysis.  
The final work-package (WP3) will take a qualitative approach as it aims to explore 
the views of stakeholders, where no prior expectations have been set. Focus groups 
provide an opportunity for exploration of a topic, facilitated by a topic guide, to elicit 
the range of opinions and recommendations within the group. They can also enable 
group consensus on a topic where this is required39.  
 
3 STUDY AIMS, OBJECTIVES, RESEARCH QUESTIONS & OUTCOMES  
3.1  
Aims:  
• To explore the potential role of PSC for people with inflammatory arthritis.  
• Describe any unmet patient need.  
• Develop clinical and research recommendations to help people with 
inflammatory arthritis to live well over the course of their disease. 
  
3.2  Objectives  
 
• Create 3 short videos for use within our WPs, to aid understanding and 
ensure consistent messaging in our project.  
• Conduct semi-structured online or telephone interviews with people living with 
an inflammatory arthritis to understand their views of PSC, and how PSC may 
support them to live well throughout the course of their disease (WP1). 
• Conduct an e-survey with healthcare professionals working in Rheumatology, 
Palliative Care, Primary Care and Community services to determine current 
provision of PSC for people with inflammatory arthritis and understand views 
about the potential value of PSC support (WP2). 
• In collaboration with Public Contributors, assimilate data from WPs1 and 2 
into a ‘key findings’ summary document and presentation, to be shared with 
expert stakeholders. Repeat previous rapid literature review and include any 
new findings in the summary document and presentation (WP3). 
• Conduct four online stakeholder focus groups to agree: a) the nature and 
scope of ‘unmet need’ as described in our data; b) recommendations for 
future clinical practice and research, and patient identified areas of 
importance, which should be measured. 
• Disseminate study findings.  
 
 

  
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3.3     Research questions: 
 
1. What are the views of people with inflammatory arthritis of PSC and how PSC 
may support them to live well? 
2. How do Rheumatology, PC, Primary Care and Community services healthcare 
professionals currently collaborate, and what do they perceive as the potential 
future value of PSC to support people with inflammatory arthritis to live well? 
3. What is the nature/scope of patients’ unmet need? 
4. What are expert stakeholders’ recommendations for future clinical practice 
and research to help people live well with inflammatory arthritis via PSC 
throughout the disease course? 
  
3.4  
Outcomes  
The primary outcomes for this research will be: 
• A description of the nature and scope of unmet patient need, 
• 
Clinical and research recommendations, informed by expert opinion and the 
‘six pillars’ framework of the British Society of Lifestyle Medicine40, which 
describe the potential role of PSC for people with inflammatory arthritis 
throughout the disease course. We will particularly consider Supportive Care, 
within the ‘six pillars’ framework, as this includes improving a person’s general 
physical and mental health.41   These recommendations will be shared with 
people with inflammatory arthritis, clinicians, academics and service 
commissioners. Future work will explore how to implement the 
recommendations into practice to improve the lives of people with 
inflammatory arthritis.  
• Patient identified areas of importance which should be measured in future 
work. 
 
4 STUDY DESIGN /SAMPLE/ METHODS/ ANALYSIS  
4.1 Overview of study 
This exploratory study comprises three sequential work-packages (WP1-3), which 
build on each other and include qualitative and quantitative data collection. 
4.2 WP1 (months 4-9)  
Explore with people living with an Inflammatory arthritis, what their 
understanding and perspectives are of Palliative and Supportive Care, and 
how Palliative and Supportive Care may support them to live well. 
 
4.2.1 Inclusion and exclusion criteria 
Inclusion criteria: Adults (> 18 years) with a diagnosis of arthritis (Rheumatoid, 
Psoriatic or Juvenile Idiopathic) or Axial Spondyloarthritis; able to understand and 
communicate in verbal and written English (or via an interpreter nominated by the 
participant or provided via an agency by the research team); in receipt, or not in 
receipt of Palliative Care services; access to Microsoft Teams or a telephone; and 
consent to sharing preferred contact details. Exclusion criteria: Cognitive 

  
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impairment that impedes communication; non-English speaker (should an interpreter 
not be available).  
 
4.2.2 Sample size: 20 to 30 participants will be sought. 15-30 participants is 
considered sufficient to capture rich, focused data, and to identify patterns or 
tendencies.38 
 
4.2.3 Patient recruitment will purposefully seek an adult heterogenous sample 
(range of ages, in receipt or not of palliative care, and from across the disease 
course) from Bath and Bristol Rheumatology clinics; Bristol Bone and Joint Health 
Integration Team; Bath Institute for Rheumatic Diseases; Dorothy House Hospice 
and wider national hospice network who have agreed to be Participant Identification 
Centres (PIC) sites. As an NIHR portfolio study, an advertisement will be shared via 
NIHR networks e.g. RDN Residential Settings Network and NIHR Be Part of 
Research. Advertising via social media platforms (e.g. Facebook, ‘X’, LinkedIn) will 
be considered dependent on response in the previous groups. We will seek to 
include diverse representation by working with organisations who serve ethnically 
diverse communities e.g. Sawubona (We See You) and Bath and Bristol Research 
Engagement Networks. Potential participants will not be approached directly by the 
research team ensuring participation is entirely voluntary and self-selecting.   
 
An interpreter will be engaged via an agency for those people who do not speak 
English at a fluency which would enable them to participate. On expression of 
interest, the relevant study documents will be translated (e.g. Participant Information 
Sheet, consent form, data privacy notice and video). We cannot guarantee an 
interpreter will be available for all languages, and this may impact recruitment.  
 
4.2.4 Recruitment materials will be co-designed with Public Contributors and 
include contact details (email, telephone) of the Research Fellow (RF) for more 
information. On receipt of an expression of interest, the RF will email or telephone to 
confirm eligibility and share the Participant Information Sheet, consent form, and 
data privacy notice via email or post. Communications and documentation will be 
translated where applicable. The RF will email or telephone to follow-up and will 
arrange an agreed interview date. Only two attempts to contact will be made at each 
time point.   
 
4.2.5 Data collection will be via semi-structured individual interviews conducted 
online via Microsoft Teams. Guidance on Microsoft Teams will be provided as 
needed. Communication via MS Teams can be via computer or telephone (without 
the need for a camera). Our participant information documents will recommend 
conducting the interview in a private area, or at a time when privacy can be provided, 
and the researcher will offer flexibility in appointment times. An interpreter will be 
provided for the duration of the interview, if required and available. 
 
A topic guide will be co-designed with Public Contributors and informed from: 
existing literature, research objectives, and pre-application focus group feedback 
from people with Inflammatory arthritis. An embedded pilot of the interview schedule 
will be conducted with two participants.  
 

  
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Following provision of responses to any questions about the study and receipt of 
verbal participant consent, interviews will be recorded using an embedded audio 
recording function or via Dictaphone if any technical challenges are encountered. 
Participants will be asked for their understanding and perspectives on PSC before 
being shown a brief video42 describing PSC and the support these services can offer. 
Subsequent questions will explore if the video has changed participants’ views, 
which circumstances Palliative and/or Supportive Care may have been helpful to the 
participant in the past, or envisaged future benefit. As the topic area has potential to 
cause distress, an a priori distress protocol43 for interviews will guide the RF’s 
response and actions throughout the interview (see supporting documents).  
 
Limited personal data will be collected during the interviews (age, sex, ethnicity and 
geographical location), for the purposes of describing the sample in dissemination 
activities and to assist with efforts to ensure inclusion as per NIHR INCLUDE 
guidelines.44 
 
Data will be transcribed verbatim using the transcribe function within Microsoft 365, 
checked for accuracy by the RF, and thematically analysed following Braun and 
Clarke.38 Transcripts will be psuedonymised via usage of unique ID numbers. No 
participant will be identifiable from any reports or dissemination activities 
undertaken.  
 
Participants’ contact details will be retained if they wish to receive a summary of 
study findings or contribute to stakeholder focus groups (WP3). 
 
4.3 WP2 (months 8-12)  
Explore Rheumatology, General practice and Community healthcare 
professionals’ (HCP) views on Palliative and Supportive Care, and Palliative 
Care HCPs’ views on Inflammatory Arthritis and Supportive Care, and how 
Palliative Care and Supportive Care may help people with Inflammatory 
arthritis to live well.  
4.3.1 Inclusion and exclusion criteria 
Inclusion criteria: Registered HCPs working in Rheumatology; registered and non-
registered HCPs in Palliative Care; Primary Care (GPs); Community teams (district 
nurses, therapists). Non-registered staff are key personnel in Palliative Care.  
Exclusion criteria: Living and working outside UK.  
4.3.2 Sample size:  As this is an exploratory study, sample size calculations are not 
necessary. We aim to recruit a minimum of 50 participants to draw meaningful 
preliminary conclusions.45 
4.3.3 Recruitment: As a Research Delivery Network (RDN) Portfolio study, 
recruitment to the e-survey will be via the RDN. Additional advertising will be via an 
e-link to the survey on professional organisational networks, websites, and social 
media platforms (e.g. Facebook, ‘X’, LinkedIn).  
4.3.4 Data collection will be via e-survey using the Qualtrics platform, to determine 
current provision, and understanding of the value, and potential value of PSC for 
people with an Inflammatory arthritis. Survey items will be informed by WP1 data, 
and Speciality expertise within the research project team, and piloted with five HCPs 

  
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prior to being finalised. The survey platform will include the participant information 
sheet and informed consent prior to presentation of open and closed questions to 
collect data including clinical role, level of education, experience since qualification, 
experience in current specialty, personal experience (self or close relative) and 
geographical location. It will comprise multiple-choice and Likert scale items46 with 
limited open-text options about participants’ understanding of PSC (Rheumatology, 
Primary Care and Community professionals), or Inflammatory arthritis and 
Supportive Care (Palliative Care professionals), and participants’ current practice.  
Videos42 will be embedded in the survey about PSC services or Inflammatory 
arthritis, as appropriate.  Subsequent items will ask how PSC services may support 
people with Inflammatory arthritis to live well, and in what circumstances (e.g. 
symptom profile, stage of disease, stage of life).  We anticipate the survey will be 
“live” for 60 days and take up to 15 minutes to complete. To protect participant 
anonymity, IP addresses and location data will not be collected. Respondents will be 
invited to add their email address if they wish to contribute to Stakeholder Focus 
Groups (WP3). This identifiable information will be shared with the research team at 
DHHC and this transfer of information between UWE and DHHC will be made 
explicit in the PIS. 
Downloaded data (quantitative and qualitative) will be analysed descriptively without 
between-groups comparisons or associations between variables. Content analysis 
will be applied to responses to open questions. 47  
 
4.4 WP3 (months 13-17)  
Establish the views of expert stakeholders on 1. nature and scope of ‘unmet 
need’ as described in our data; 2. key points for Rheumatology, Palliative Care, 
Primary Care, and Community services future clinical practice and research; 3. 
barriers and facilitators to implementing this expert opinion. 
 
4.4.1 Inclusion and exclusion criteria 
Inclusion criteria: Four population groups will be included in this WP who represent 
the key demographics best placed to have knowledge, experience and views on this 
topic to inform next steps.  
a) People who meet inclusion and exclusion criteria for WP1  
b) HCPs who meet inclusion/exclusion criteria for WP2  
c) Representatives from key charities and national organisations (e.g. Arthritis 
UK, National Rheumatoid Arthritis Society, National Axial Spondyloarthritis 
Society, Hospice UK). 
d) Commissioners of services in Integrated Care Boards. 
Exclusion criteria: Unable to access Microsoft teams; non-English speaker without 
access to a nominated interpreter (should an interpreter not be available).  
 
4.4.2 Sample size: Guest et.al.48 recommend three focus groups as sufficient to 
capture the most prevalent themes in a topic area. Due to the diversity and number 
of HCPs, in terms of Specialty and Setting, we will conduct four stakeholder focus 
groups to ensure we capture a representative breadth of views. Each group will 
comprise a minimum of two and maximum of four representatives from populations 
a) and b), and a minimum of one representative from population c). It is hoped at 

  
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least one focus group will include representation from population d) but practicalities 
may require 1:1 consultation with this group (n=2).  
 
4.4.3 Recruitment: Participants who have volunteered in WPs1 and 2 to participate, 
will be contacted again to confirm interest. Email invitations will be sent to identified 
key charities and national organisations, and to Integrated Care Board Medical and 
Commissioning leads for Bristol and Bath regions.   
  
4.4.4. Data collection Data from WP1 and 2 will be assimilated into a ‘key findings’ 
presentation to be shared with expert stakeholders. Pre-application rapid literature 
review will be repeated and any new findings included in this presentation. A 
summary of the project’s findings, and links to the three videos used, will be sent to 
participants prior to the online event/s to optimise the potential for reflective and 
deep discussion.49 This summary will be used as a topic guide to steer the 
discussion to key questions. Focus groups will be conducted face to face (x2) and 
online (x2) via Microsoft Teams at a date and time convenient to participants, and 
following participant consent, recorded using embedded audio recording function. 
Each focus group will run for a maximum of 120 mins. Discussion will broadly focus 
on:  
• What would ‘good’ look like for people with Inflammatory arthritis to 
live well with support from PSC services? 
• How would this be measured? 
• What is the current unmet need?  
• What could reduce/address this unmet need in Rheumatology and 
Palliative care services?  
• What are the challenges and barriers? 
• What further clinical and/or research work is required?  
After each event, the discussion will be summarised by the lead facilitator (Fry or 
McCabe) and confirmed by members of the group. An iterative approach will be 
taken across these events so the final summary is representative of the discussion 
from all Stakeholder events.  For example, in groups 2 and 3, following initial 
discussion and agreement of draft recommendations, the views of the previous 
Stakeholder group/s will be shared and added to or refined. Using transcribe function 
within Microsoft 365, audio data will be transcribed verbatim and analysed using 
inductive qualitative content analysis.49,50 
 
4.5 Data analysis 
4.5.1 WP1 Qualitative interviews 
Interview data will be analysed by the Research Fellow (RF), supported by 
Qualitative co-applicant lead Llewellyn, following Braun and Clarke’s six stage 
process for reflexive thematic analysis (TA).38  An inductive orientation will ensure the 
analysis is driven by data, rather than by existing theoretical constructs. Lumivero 
NVivo qualitative data analysis software will be used for data management and 
analysis. 

  
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The analysis phases will be: 
1. Familiarisation with the data 
2. Generation of initial codes to identify data items which represent units of 
meaning relevant to the research questions 
3. Generation of candidate themes representing conceptually similar codes 
4. Review and reorganisation of themes to reflect the most significant patterns    
in the data 
5. Naming and refinement of themes in relation to core concepts  
6. Reporting. 
 
Prior to the writing and dissemination of the final summary report, themes will be 
presented for review by our Public Contributors to gain their interpretation and inform 
dissemination of findings. To ensure rigour, oversight will be provided by the research 
team throughout the analysis process. 
4.5.2 WP2 Healthcare professional e-survey 
As this is an exploratory study, sample size calculations are not necessary, but we 
will aim to recruit a minimum of 50 participants to draw preliminary conclusions.51 
Survey response data in Qualtrics will be downloaded as an SPSS file onto a secure 
UWE Bristol OneDrive folder. Anonymised data will be securely transferred from 
UWE to Dorothy House and only members of the research team will have access to 
this information. Data will be analysed by the RF, supported by Quantitative co-
applicant lead Ndosi. Free text responses will be analysed using content analysis.50 
Quantitative responses will be analysed using descriptive statistics, with categorical 
variables summarised as frequencies (%) and continuous variables summarised as 
medians (interquartile ranges). 
4.5.3 WP3 Stakeholder Focus Groups 
Transcribed data will be uploaded onto NVivo, and analysed by RF, supported by 
project lead McCabe, using inductive qualitative content analysis in a three-phase 
process.50,51 
1. Preparation phase: collecting suitable data, making sense of the data and 
selecting the unit of analysis. Each focus group transcript will be 
considered a single ‘unit of analysis’ as large enough to be considered 
whole but small enough to be kept in mind during the analysis process.49 
Transcribed text will be categorised into content areas (approximately 6), 
or NVivo ‘parent nodes’, that reflect the questions asked in the stakeholder 
focus groups. 
 
2. Organisation phase: open coding, creating categories and abstraction. 
Headings will be attributed to the text, and categories freely generated 
(open coding). Categories will be compared and grouped into higher order 
categories, where text appears to ‘belong together’. During abstraction, 
categories will be re-compared and re-grouped and put into a hierarchical 
model of closeness to distance from the text.51 
 
3. Reporting phase: The content of the categories will be described and 
reported in detail to our Public Contributors and the research team to 

  
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increase trustworthiness of findings, prior to publication. The findings will 
be presented as clinical and research recommendations for PSC, to help 
people with inflammatory arthritis to live well over the course of their 
disease. We will particularly consider Supportive Care, within the ‘six 
pillars’ framework40, as this includes improving a person’s general physical 
and mental health.41. 
 
 
5. STUDY SETTING  
The majority of this study collects data online (WP1, WP2 and 2 focus groups in 
WP3). The two face to face focus groups in WP3 will be conducted at Dorothy House 
Hospice. 
 
6.STUDY RECRUITMENT AND WITHDRAWAL 
6.1 Work-package 1 
We have allocated four months for recruitment and the conduct of interviews. We 
have deliberately sought agreement from a large number of organisations (Bath and 
Bristol Rheumatology clinics; Bristol Bone and Joint Health Integration Team; Bath 
Institute for Rheumatic Diseases; Dorothy House Hospice and wider national 
hospice network; Sawubona (We See You) and Bath and Bristol Research 
Engagement Networks). We do not anticipate any problems in recruiting a minimum 
of 6 people per month, for example, the Bristol and Bath Rheumatology services see 
approximately 500 people with inflammatory arthritis per month, and Dorothy House 
Hospice, has had, on average, 10 people with inflammatory arthritis referred every 
month for the past two years. We will monitor recruitment rate closely and if any 
concerns arise that we may not hit our recruitment timeline, then we will advertise on 
social media. 
Interview participants will not be paid or incentivised to take part.   
6.2 Work-package 2 
We have allocated three months for the e-survey to be ‘live’ to recruitment, and to 
reach a minimum of 50 participants. We consider this to be realistic based on similar 
surveys our research team have conducted in the past two years. For example, a 
recent national, online survey of healthcare professionals recruited 77 participants 
over a three-month period via professional networks and social media. The project 
timelines have flexibility within them for us to extend the survey for a further month if 
required. 
6.3 Work-package 3  
The majority of participants in our four stakeholder focus groups will be volunteers 
from WP1 and 2. If at the end of those work-packages we have any concerns about 
the number of volunteers then we will actively seek additional participants via our 
established patient and public collaborators, and professional networks. 
Focus group participants will be given a £25 voucher as a ‘thank you’.  
 

  
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6.4 Withdrawal from the study  
WP1: Participants will be advised during data collection that they can pause or stop 
the interview at any time if they wish to do so. Each participant also has the right to 
withdraw from the study for up to two weeks after their interview. This means that 
any recording and transcription related to them will be deleted at that point, and they 
will not be contacted further. However, it will not be possible to exclude their data if 
they request to withdraw after two weeks, as their data may already be included in 
the analysis. Participants will be made aware of this via the participant information 
sheet.  
WP2: Completion and submission of the survey is voluntary. Once a participant 
submits their survey, it will not be possible to withdraw their data. Participants will be 
made aware of this via the participant information sheet.  
WP3: Participation in the focus groups is voluntary. Participants can withdraw at any 
time during the event. It will not be possible to remove a participant’s individual 
contribution in the recording of these focus groups. Participants will be informed that 
these focus groups will be recorded in the participant information sheet and again at 
the start of workshop. At the end of the focus group all participants will be reminded 
that the focus group was recorded and data will be anonymised. If a participant has a 
particular response they would like to withdraw, then a note will be made of this and 
that part of their contribution will not be included in the final data set.   
  
7  
ETHICAL AND REGULATORY CONSIDERATIONS  
  
7.1. Assessment and management of risk  
At the onset of the project, a full risk assessment and data protection impact 
assessment will be conducted, and issues identified, and mitigations found.   
Training needs of research staff or our Public Contributors will be identified and 
training completed, this will be supported by our local RDN as they have a suite of 
research delivery training for research staff and the public. 
The project involves interviews, a survey, and stakeholder focus groups with human 
participants who are either healthcare professionals, or recipients of healthcare 
services, including from the NHS and hospices. NHS Ethical and HRA approvals will 
be sought prior to the commencement of participant recruitment. 
We will have a process for adverse events. A distress protocol will be compiled and 
adhered to in the event of any emotional issues arising amongst participants and a 
list of sources of support will be available. 
A Steering group will monitor progress of the project and ensure all issues are 
considered in a timely way, and we will benefit from a range of expertise from 
members. Membership will include: at least one Public Contributor; experts in the 
project’s methods; clinical academic expertise in Rheumatology and Palliative Care, 
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BSW Research Hub will also help with all aspects of research governance and 
sponsor support, as our local R&D office. This includes helping with and ensuring all 
relevant regulatory and ethical approvals are in place before the study commences. 
 
7.2  Research Ethics Committee (REC), other Regulatory review & compliance 
and amendments  
The Chief Investigator will ensure this study is conducted in accordance with the 
principles of the Declaration of Helsinki and with relevant regulations and with Good 
Clinical Practice.  
The protocol, participant information sheet, and consent form will be submitted for 
HRA and NHS Ethical Approval by a member of the study team. Further approvals 
will be sought from the UWE ethics committee, BSW Research Hub and via the 
internal DHHC research governance process. Formal approval will be obtained from 
recruitment centres via Participant Identification Centre documentation. Participant 
recruitment will not commence until these approvals have been gained.   
The Chief Investigator will review any requests to amend the protocol and will decide 
whether an amendment is substantial or non-substantial. The Chief Investigator will 
ensure that any required study amendments are submitted to the appropriate body 
for approval, including substantial amendments that require review by NHS REC. 
Amendments will be communicated to relevant stakeholders and will not be 
implemented until all required approvals have been received. Amendments will be 
recorded in the study data file and will be reflected with revision of the study protocol, 
tracked using version numbers.  
All correspondence with the REC will be retained and reporting completed as 
requested including notification to the REC of the end of the study. Annual progress 
reporting will be the responsibility of the Chief Investigator.  
 
7.3  Patient and Public Involvement  
People with lived experience of inflammatory arthritis have been central to 
developing our proposal. They will remain integral to our project, and work alongside 
our research team providing insights, challenges and advice. 
Two public contributors with inflammatory arthritis have developed this project 
alongside us (Fry and James). With appropriate training, they will lead our public 
involvement activities supported by two public engagement facilitators in Palliative 
Care and Rheumatology services. Fry will also co-lead Study 3 with McCabe. Input 
from Fry and James into this application reflects our aim to ensure meaningful public 
engagement is included in our research. Acting as co-applicants and members of the 
Project team they bring a wealth of lived experience of inflammatory arthritis. 
We plan to engage with more public contributors at key stages in the project. Those 
people who contributed to our project preparation focus group and 1:1 meetings, 
have agreed to remain involved with the project and to be consulted as it progresses. 
We also have agreed access to Bristol Rheumatology Patient Group and Bath 
Institute for Rheumatic Diseases membership. We will seek the views of people from 

  
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these groups at key time points in the application, in addition to the contributions 
from Fry and James: 
• The co-creation of explanatory videos on PSC and inflammatory arthritis with 
Leon! Animations42 
• Content and design of recruitment materials  
• Interview topic guide 
• Review of Study 1 draft qualitative themes to inform dissemination of findings 
and Study 2 survey items  
• Summary of key findings for stakeholder focus groups  
• Dissemination strategy 
 
Public contributors will be paid for their time and expertise according to NIHR 
payment guidance52. 
7.4  Identifiable information   
The study team will ensure that participants anonymity is maintained throughout the 
research lifecycle.  
WP1 & WP3: All personally identifiable information will be redacted from transcripts, 
and pseudonyms will be used in all subsequent analysis and reporting to prevent re-
identification  
WP2: In accordance with data minimisation principles, the Qualtrics survey settings 
will be configured to ensure that IP addresses and geolocation data are not 
collected. Respondents will be invited to provide an email address only if they 
voluntarily wish to contribute to Stakeholder Focus Groups (WP3). These contact 
details will be stored separately from the survey dataset 
All participants will be identified only by a unique participant ID number or 
pseudonym on all project documents and databases. The study will comply with the 
UK General Data Protection Regulation (UK GDPR) and the Data Protection Act 
2018, which requires data to be anonymised as soon as it is practical to do so. All 
documents will be stored securely and will only be accessible to the study team or to 
authorised personnel solely for regulatory purposes, and with approval from the 
Chief Investigator.   
 
7.5 Data protection and patient confidentiality   
Dorothy House 
DHHC will act as data controller and all data will be stored in accordance with its 
data management policies. A DHHC data protection impact assessment will be 
completed and approved by the DHHC Head of Governance prior to the start of data 
collection.  
  
Participant identifiable details will be securely stored at DHHC for the duration of the 
project. Written documents will be secured in a locked filing cabinet within the 
Research Team office, and electronic documents will be stored in a secure folder on 
the DHHC server, accessible only to members of the study team. All documents 
containing participant identifiable details will be deleted on completion of the study.  

  
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The only exception will be if study participants have given express permission during 
consent for the study team to contact them again in relation to future research or 
education projects. If this permission is revoked all identifiable details in relation to 
that individual will be deleted. 
If a Dictaphone is used in the study, it will remain in the possession of the study team 
at all times when not stored in a locked cabinet at DHHC. Audio recordings from the 
Dictaphone or MS Teams will be uploaded to a folder (accessible only to members of 
the study team) on the DHHC secure server as soon as is practicable and deleted 
from the audio device (Dictaphone or Microsoft Teams recording) immediately 
thereafter.  
All audio recordings, wherever held, will be erased once analysis of the data is 
complete.   
A single electronic document linking unique identification numbers with participants’ 
personal information will be password protected and securely stored on the DHHC 
server. This will be accessible only to the study team and will be deleted on 
completion of the project.  
WP1 anonymised interview data files will be stored in a secure folder on the DHHC 
server. These files will be shared with the WP1 lead at UWE via a secure encrypted 
folder on the DHHC server. 
All laptops/PCs used in the collection and analysis of data are password protected as 
is access to electronic files held on the DHHC server. A study log will be used to 
maintain detailed records of data collection and research activities.  
Anonymised electronic data will be securely held for 10 years following the study end 
date, then deleted.   
 
University of the West of England 
UWE Bristol will act as the data controller, and all personal data will be processed in 
accordance with the General Data Protection Regulation (GDPR) and the Data 
Protection Act 2018.  
WP2 data collection, including informed consent, will be conducted via Qualtrics, the 
University's authorised survey tool to ensure legislative compliance. Participants 
must affirmatively agree to the electronic consent statement before accessing the 
survey. In adherence to data minimisation principles, identifiable data collection will 
be restricted to what is strictly necessary.   
Upon completion of WP2 data collection, both the electronic consent records and the 
survey dataset will be downloaded directly to a secure, encrypted project folder on 
UWE Bristol’s password-protected OneDrive server, accessible only to authorised 
researchers (which includes the DHHC research team). Immediately following 
successful transfer and verification, all data held on the Qualtrics platform will be 
permanently deleted.  
Personal data will be retained only for the period justified in the participant consent 
form and Research Data Management Plan (RDMP). Upon completion of the 
research or at the end of the agreed retention period, personal data will be securely 

  
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destroyed in line with UWE’s disposal standards. Anonymised data, from which 
individuals cannot be re-identified, may be archived for future research use. All 
researchers involved will adhere to the principle of "data protection by design and 
default" throughout the project lifecycle. 
 
7.6  Indemnity  
DHHC has appropriate insurance to meet the potential legal liability of the 
sponsor/employer and of the study investigators, for harm to participants arising from 
the conduct and management of the research.  
  
7.7  Access to the final study dataset  
Access to raw data (demographic characteristics, audio-recordings and transcripts) 
from all WP’s will only be granted to members of the study team in line with the 
provisions of section 7.4 above. Due to the nature of the qualitative data, the dataset 
will not be shared beyond the study team. Anonymised data may be used for 
reporting, informing future research, and for secondary analysis. This will be made 
explicit in the participant information sheet and in the consent form.  
  
8  
DISSEMINATION POLICY  
  
8.1   Dissemination policy  
DHHC will own the data arising from the study. Data reporting will contain non-
identifiable data only.   
Working with our public contributors we will draft a dissemination strategy at the start 
of the project and review and update it as the project progresses. We anticipate the 
following outputs:  
• Project summary reports will be emailed to those research participants in 
Study 1 who have accepted this offer 
• Podcast of our research findings in collaboration with the Bath Institute for 
Rheumatic Diseases (BIRD). Since 2020, BIRD have been producing 
podcasts for people living with a rheumatology condition (see letter of support, 
and podcase examples53) 
• Text on the Bristol Bone and Joint Health Integration Team website, and in 
email alerts to the membership, which includes people living with arthritis (see 
letter of support and website54) 
• We would like articles in national charity newsletters, for example, Arthritis UK, 
National Rheumatoid Arthritis Society and National Axial Spondylarthritis 
Society.  
 
8.2  Authorship eligibility  
  
Authorship of the final study report will be limited to members of the study team.   

  
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10.   
APPENDICES  
  
10.1     Appendix 1: Gantt chart  
 
 
 

  
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Appendix 1