Establishing a research partnership to investigate functional loss and rehabilitation towards the end of life

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Background

Functional loss (also called activity limitation or disability) is defined as an inability to perform necessary or desired tasks. 1 This is typically operationalised as occurring in terms of the inability to perform activities of daily living: from more basic self-care tasks, such as bathing and dressing, to instrumental activities requiring more complex planning and thinking, such as safety awareness, taking medications, social participation and managing money and bills. 1–3 Life-limiting illness(es) and accompanying symptoms (e.g. pain, fatigue, breathlessness, anxiety, depression or cognitive dysfunction) commonly contribute to functional loss and a consequent need for help, support or supervision. 4–6 While functional loss often occurs late in the course of disease for people with cancer, those with non-cancer conditions (e.g. chronic respiratory diseases or heart failure) and multiple long-term conditions experience functional loss earlier in the disease trajectory,7,8 with periods of acute worsening that fluctuate over time. 9–11 Both sudden and progressive loss of ability can cause crises that precipitate hospital or care home admission12 and result in distress and suffering related to loss of usual roles and routines, independence, choice and sense of dignity. 13–15

Rehabilitation is a set of interventions designed to address functional loss, promote activity and preserve functional reserve and social participation. 16,17 It is characterised by cycles of nested treatment, which are reviewed and refined over time and typically delivered by a multidisciplinary team. 18 As people age and increasingly live with multiple long-term conditions, trajectories of functional loss become more variable and unpredictable giving rise to additional complexities for rehabilitation delivery. 19 Challenges in rehabilitation include weighing up potential treatment benefits and burden, aligning care to individuals’ priorities and being responsive to fluctuating needs across multiple domains of health. 20–22 Palliative rehabilitation focuses on relief and reduced impact from distressing/disruptive symptoms (e.g. breathlessness or fatigue)23 and managing or minimising the impact of geriatric syndromes (e.g. frailty or sarcopenia). 24

Within the fields of palliative medicine and geriatric medicine, a spectrum tends to exist where palliative medicine focuses on symptoms and geriatric medicine focuses on function. 25 Both share commitment to person-centeredness, communication, education and multiprofessional working. Rehabilitation is recognised as essential within both palliative and geriatric care: it can reverse and slow functional loss, which may not only improve quality of life but may also cut ongoing costs relating to care, admissions and complications. 26–28 Examples of specific interventions include techniques to manage persistent symptoms and adjustment work around loss (in palliative care),29–31 comprehensive assessment and management of geriatric syndromes (in geriatric care)32–34 and environmental adaption and assistive technologies. 35–37 Yet, access to these services is often inequitable, and individual teams’ capacity to deliver evidence-based rehabilitation interventions is highly variable. 27,38

Despite limited life expectancy, or uncertain ability to benefit from interventions, palliative rehabilitation services have often been not provided or dis-investment has occurred due to limited resources and competing priorities. 39–41 Such decisions are rarely supported by rigorous needs assessment or evaluation of effectiveness and cost effectiveness partly because these are methodologically difficult in this context. As a result, optimal ways to integrate the best of palliative and geriatric rehabilitation towards the end of life are currently unknown. Clinical trials and conventional health economic approaches may not be sufficient, at least on their own, and new methodologies have been suggested to answer these questions more meaningfully and in a way that supports service development and commissioning. To address these challenges, it is imperative that diverse expertise is brought together. 42 We therefore aimed to establish and grow a research partnership around the topic area of functional loss and rehabilitation in palliative and end-of-life care.

Objectives

1. Establish and develop a multidisciplinary, cross-peciality collaborative research partnership that includes geographic populations historically underserved by research activity.

2. Generate key research questions in relation to functional loss and rehabilitation in palliative care by collaborating with professional and public stakeholders.

3. Co-design and submit high-quality competitive research proposals to future National Institute for Health and Care Research (NIHR) calls on palliative and end-of-life care.

4. Share topic and methodological expertise to jointly address the complexities of rehabilitation interventions within palliative and end-of-life care, including their rigorous evaluation, and pathways to implementation.

5. Build capacity and capability to deliver nationally generalisable studies of rehabilitation interventions in palliative and end-of-life care, across health and social care, and voluntary and community organisations in partnership with patients and their families.

Objective 1 – Establishing the partnership

The Palliative Care Rehabilitation Partnership was established by professionals from across England and Scotland with a focus around the topic area of functional loss and rehabilitation in palliative and end-of-life care. The partnership contained multidisciplinary professionals with complementary areas of expertise and experience in complex palliative and geriatric research, physiotherapy, nursing, palliative medicine and psychology. The project adopted the term ‘partnership’ to describe the expectation of collaboration among researchers, clinical academics, clinicians, students and patient and public involvement (PPI) members. The partnership leads, who were the main representatives from the collaborator sites (Figure 1), steered activities such as workshops and training and were responsible for promoting the partnership to local people and infrastructure. Individuals who participated in any of the partnership activities were considered partners.

FIGURE 1.

Partnership leads, expertise and linked infrastructure.

The partnership was successfully established through an initial launch meeting, development of an online presence and creating platforms for joint working. We recruited a diverse group of multidisciplinary, cross-speciality professionals spanning England and Scotland, with insight into the local geographical populations and areas under-represented in research. The partnership was promoted via the Applied Research Collaboration (ARC) National Leads for Palliative and End of Life Care, local ARCs and the Council for Allied Health Professions Research to encourage clinicians, students and PPI members to engage. The partnership created a shared online workspace via Microsoft SharePoint, which provided the partnership leads with the means to collectively work on projects and share information. Additionally, the partnership leads collectively met monthly via Microsoft Teams to discuss partnership activities and to share updates on key deliverables. Partnership activities were shared with and open to any professional or public member with an interest in research and care relating to functional loss in palliative care and towards the end of life. An overview of the partnership’s key activities is summarised in Figure 2.

FIGURE 2.

Summary of partnership activities.

Objective 2: Research question generation

The partnership commenced its activities by conducting a research question generation activity, utilising a modified version of the Child Health and Nutrition Initiative methodology43 to gather and score questions related to functional loss and rehabilitation towards the end of life. This was completed as a stakeholder activity (rather than a research study), and therefore research ethics approval was not required.

A management group, comprising all the partnership leads, and a stakeholder’s group consisting of researchers, clinical academics, clinicians, experts by experience, patients and family members were created. The stakeholder’s group were recruited through the partnership leads’ affiliations and networks, established public involvement groups and key research publications as well as snowballing through additional recommendations from those invited to participate.

The research question generation and prioritisation process comprised five key stages: defining, sourcing, synthesising, scoring and analysis/dissemination. The management group specified the scope and prioritisation criteria for the research question generation exercise. The questions were devised by using the following scope aligned with the topic and NIHR principles:

• Adults with advanced disease experiencing, or at risk of, functional loss.

• Research ideas should be relevant to a UK context.

• Research projects should deliver findings that could be implemented into practice within 3–5 years.

Once the scope had been established, the stakeholder’s group were e-mailed to inform about the objectives and context of the research question generation exercise and were invited to participate. Members who expressed an interest in participating were subsequently invited to generate and submit research questions via e-mail or an online form. PPI members were offered support in sharing their research ideas and developing those into a research question format if they preferred.

The proposed research questions were collated by the management group and were made available to the stakeholder’s group for 4 weeks, who were invited to score the proposed research questions in relation to the prioritisation criteria via a digital or paper form. The stakeholder’s group were asked to score research questions against five criteria:

• Answerability – Is the proposed research question answerable?

• Effectiveness – Will the research question lead to intervention that effectively addresses functional loss in advanced disease?

• Feasibility – Is the research question feasible based on current knowledge, capacity and resources?

• Burden reduction – Will the proposed research lead to a significant burden reduction for patients, carers and families?

• Equity – Will the research bring about changes that favour patients equitably?

Research question scoring

The stakeholders scored each domain of the research question by using the following scoring system: 0 (unlikely to meet criterion), 0.5 (not sure if it can meet the criterion) and 1 (likely to meet the criterion). PPI members were offered additional support to complete the scoring and were offered the option of alternative completion formats (larger print paper copies) and a simplified scoring system, if they preferred, using just one of the five criteria (burden reduction). Participants were asked to leave a blank score if they were unable to judge the criterion due to a lack of knowledge on the subject. Additionally, members were provided with the opportunity to input free text comments via the online form to relay any constructive feedback and to express their interest in a proposed question. This information was consequently shared with the individual(s) who proposed the question, with the aim of introducing members with a shared interest in a given topic area. For each research question submitted, mean scores from individual responses across the five prioritisation criteria were calculated, giving an overall ‘Research Priority Score’. The scores were gathered using Microsoft Excel and transformed into a percentage to make them more interpretable.

The activity generated a variety of research ideas, with some ideas being more refined and developed than others. A total of 82 research ideas were submitted by 35 people; out of which, 37 research ideas considered a variety of interventions for people with a specific life-limiting condition, with the top 5 being cancer, dementia, stroke, motor neurone disease and frailty. The remaining 45 research ideas considered the impact of interventions in patients with any advanced disease. Among the proposed research questions, 23 questions suggested possible interventions and outcomes to be measured. These included assessing the efficacy of modalities such as exercise, nutrition, electrotherapy, psychosocial strategies and the use of robotics in reducing functional decline, minimising the impact of fatigue and improving quality of life for patients and their families. Figure 3 captures key themes from the research questions submitted to depict the suggested populations, interventions, comparisons and outcomes.

FIGURE 3.

Word cloud depicting the population, intervention, comparison and outcomes from the submitted research questions.

On average each question was scored by 15 people (Table 1) and received 5 free-text responses. A mean of 4 people expressed an interest for each question submitted, with one question generating an interest from 13 individuals. Notably, research questions scored highest on the ‘answerability’ domain while most concerns were raised around ‘effectiveness’ and ‘equity’. Research questions and scores were shared with all participants and disseminated in a report via e-mail. The generated scores and free text comments allowed members to strengthen their research proposals by identifying areas requiring development prior to attending the partnership’s first workshop.

TABLE 1 - Scores provided by the stakeholder group on the submitted research questions

Note

A score of 0 indicates unlikely to meet criterion and 1 indicates likely to meet the criterion.

Question	Mean	Median	Interquartile range (IQR)
Answerability	0.68	0.74	0.26 (0.57–0.83)
Effectiveness	0.60	0.63	0.27 (0.47–0.73)
Feasibility	0.64	0.67	0.18 (0.58–0.76)
Burden reduction	0.65	0.68	0.21 (0.54–0.75)
Equity	0.60	0.62	0.21 (0.50–0.71)
Across all five domains	0.63	0.65	0.20 (0.56–0.76)

Clinical academic mentorship

The partnership offered mentorship to two clinical academics and provided them with protected time to develop research projects and proposals. The partnership recognised the importance of protected time for front-line clinical academics, as studies indicate that these individuals often lack the necessary time to apply their clinical and academic expertise to promote clinically driven research. 45–47 One clinical academic commented that:

The partnership provided me with access to and support from world leading academics in the field of palliative care. They helped me understand different methodologies, gave me the time and space to reflect on methodological and theoretical challenges in developing robust programmes of research. As an early career researcher this has been immensely valuable.

Patient and public involvement

Alongside the outlined activities, the partnership also took up several other capacity building exercises. The involvement of PPI members was embedded within all partnership activities, including the research generation activity and proposal development. Two PPI members and an academic from the partnership collaboratively wrote a blog piece for the NIHR, which reflected on their experiences from partaking within the first partnership workshop. 48 Outside of these activities, PPI members were encouraged to join the various existing networks and ongoing activities, such as the National ARC Palliative and End of Life Care PPI workshops. Partnership leads also shared their expertise and good practice in involvement with other members of the partnership and helped link up partners with additional PPI expertise where helpful.

Equality, diversity and inclusion

The partnership was committed to equality, diversity and inclusion during all activities. To achieve this, the partnership actively sought participation from a diverse range of stakeholders, including clinicians, researchers and PPI members, ensuring that voices from different backgrounds and experiences were heard and valued. Additionally, the partnership’s training opportunities and mentorship programmes were designed to be inclusive and accessible to individuals from various backgrounds and levels of expertise.

Reflections on partnership working

The partnership leads collectively met to discuss the key learning points after establishing the partnership. There was a mutual consensus that the partnership provided opportunities to gain new perspectives by bringing together individuals from across the country, each with their own unique skills, expertise and experiences. It provided junior researchers with the opportunity to be part of the iterative process of proposal development as well as provided opportunities to network with a more diverse group of experts. The workshops in particular were considered to be successful and of benefit, and would be recommended for future partnerships. The workshops provided the opportunity for presenters to be supported with their proposal development, brought together various professionals from a range of disciplines and specialisations and allowed PPI members to share their personal experiences and insights. The partnership leaders identified some administrative challenges during the set-up phase of the partnership, including those related to contracting with use of generic research governance templates by partners and sites. These difficulties were likely due to the novel nature of the partnership and being among the first to receive this NIHR funding. Moreover, the clinical academics without backfilled time found it challenging to create and develop proposals alongside their usual responsibilities. Future initiatives looking to encourage new collaborations with clinical academics may need to prioritise additional resources to support the time required. Through the workshops, the partnership has supported the development of at least three research proposals in preparation for submission to NIHR and other public funding calls. These include streams taking part in the NIHR themed call for Palliative and End of Life Care and fellowships.

Conclusion

During a 15-month period, the Palliative Care Rehabilitation Partnership was established and facilitated a series of workshops to aid members developing, refining and transforming their research ideas into research proposals for submission to NIHR funding calls. Furthermore, the partnership engaged in a range of activities such as conceptually mapping palliative rehabilitation services, promoting training opportunities for students, clinicians and PPI members as well as granting clinical academics protected time to undertake research activities. As a result of the opportunities made possible by the partnership, a network has been formed that will continue to collaborate on, and support research related to, functional loss and rehabilitation in palliative and end-of-life care.

Additional information

List of abbreviations

ARC

Applied Research Collaboration

NIHR

National Institute for Health and Care Research

PPI

patient and public involvement

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