Palliative care interventional research in general practice: a narrative review of factors affecting research conduct

Introduction

General practice is central to the provision of palliative care, addressing and responding to the evolving care needs of patients and their families from the diagnosis of a life limiting condition until death (1-3). General practice health care professionals (HCPs), including general practitioners (GPs), practice nurses, allied health professionals (i.e., physiotherapists and pharmacists) and doctor’s assistants, provide a wide range of care, including symptom management, advance care planning, spiritual and psychological care for the patient, and their wider care and family network (1,2). General practice is usually characterised by continuity of care, where the patient, their family carers, the GP and other primary care staff have longstanding relationships with the patient and family (1-3). In countries such as Belgium and Australia, almost all patients with palliative care needs are supported by general practice clinicians in the last months of life (4,5). General practice is vastly different to inpatient care, with a different context, broad and varied clinical presentations, and care processes that are aimed towards a largely independent patient population, provided by a smaller multidisciplinary care team with generalist skills and experience (6). Whilst the importance of general practice to palliative care is widely acknowledged, a key challenge is developing evidence to improve its practice that is specific to the needs and context of general practice (7).

Interventional research conducted in general practice (in non-palliative care populations) continues to be uncommon, despite increased attention internationally from clinicians, researchers and funding bodies of the importance of such research to meet future health care needs, and evaluate the efficacy and effectiveness of health care interventions (6,7). Evidence from hospital and specialist settings is not readily transferable to general practice, as the population, context and care processes are vastly different (6). The majority of palliative care provision occurs in general practice, yet a review of palliative care clinical trials identified that only 9% of such studies were conducted in this setting (8-10). Research should ideally aim to develop evidence and interventions designed for general practice, particularly given the impetus towards palliative care provision in the community as a response to an aging population, increasing rates of chronic disease, and economic and staffing pressures on health systems (11). Interventional research in specialist palliative care settings is already challenging, as it involves often vulnerable populations with high drop-out rates, institutional limitations, gatekeeping, and (negative) perceptions of palliative care (12-14). Conducting interventional palliative care research in general practice settings may be subject to other challenges and barriers.

Palliative care interventions in general practice are invariably complex interventions, involving many different stakeholders, processes, and set within longitudinal care relationships (15,16). As with any complex intervention, to facilitate successful implementation requires an understanding of the context of the intervention and how the core processes can be achieved in the specific setting (17). This article aims to describe the factors influencing the conduct of interventional research in general practice settings for patients with palliative care needs. We present this article in accordance with the Narrative Review reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-23-587/rc).

Methods

A narrative review was performed to identify factors affecting the conduct of palliative care interventional studies in general practice, informed by the integrative review framework of Torraco (18). Interventional studies were defined as experimental studies in which a form of intervention was conducted and evaluated, including before/after implementation and clinical trial designs (19). This review aims to synthesise data describing the experiences of conducting diverse studies in general practice palliative care—barriers, enablers, or other factors that affected the conduct of the study—and to summarise the available literature on the subject (20).

A literature search of MEDLINE (PubMed interface) was conducted, based on the main domains of interest, utilising the Population Interest Context (PICo) framework, including the population (patients with palliative care needs), the context (general practice) and interest (interventional studies) (21,22). Patients with palliative care needs were defined as those people who potentially may benefit from palliative care due to increased needs and/or limited life expectancy (23). Interventional studies were defined as empirical research in which a change to health care policy or processes was implemented (19). A full description of the search strategy is presented in Table 1. MEDLINE was chosen as the primary database for biomedical literature, and the timeframe limited to ensure that articles related to current practices and context of general practice and palliative care. Search terms were developed by the research team, which included researchers with expertise in conducting literature reviews, informed by validated search terms (24-26). The literature search was conducted on 26 September 2023, including articles published from 2001 onwards. Studies were included in which empirical data was reported detailing the factors influencing, or experiences of HCPs, patients and carers relating to research conduct. Initial screening on title and abstract were conducted by M.G. and M.v.d.W. using Rayyan, an online literature review tool, and where any doubts arose these proceeded to full text review (27). Inclusion through full text screening was conducted by M.G. and M.v.d.W., with any uncertainties resolved through consensus. Data reporting on factors that impacted the conduct of research in general practice settings was collected by these two authors. Additionally, general information (title, author, country, year), intervention type and description were collected.

A narrative approach to data synthesis was adopted, in which the data was inductively organised into themes by the researchers, informed by the work of Popay et al., specifically concept mapping (28).

Results

A total of 767 citations were identified. After screening 94 articles were deemed potentially eligible (please see Figure S1). After full-text screening, a total of 16 articles were included (please see Table S1). Eight of these studies were conducted in Western European countries (Belgium, Germany, Netherlands, Switzerland, and the United Kingdom), five in Australia, and three in Northern America (United States and Canada).

Five thematic groupings were identified from the literature that affected the interventions: factors relating to (I) HCPs, (II) patients and carers, (III) general practices, (IV) health systems, and (V) research design. Table 2 contains an oversight of these factors and potential facilitators to facilitate research.

HCP factors

The foremost challenge of engaging with palliative care research was the pressures of clinical work and its administrative tasks in primary care (12,16,29-32,40). Clinical care was given priority over research tasks (16,31,40). As a result, HCPs reported limited remaining time and/or energy to engage with research, in particular to assist with patient screening or identification, that was necessary for recruitment to studies (31,40). When this research role was supported alongside their clinical tasks, including financial support and training, this facilitated HCP involvement in research (31,38).

The perception of palliative care to general practice clinicians was an important barrier to engagement. Many HCPs had limited experience and understanding of palliative care, or associated palliative care as being only ‘terminal care’, and thus were cautious of involvement (31,32,34). They believed that including patients in such research would be perceived as a ‘condemnation’ of their ‘terminal’ condition or had poor associations with the name ‘palliative care’ (34).

General practice HCPs usually had longstanding relationships with many patients and found it challenging to consider including patients for palliative care trials even when they clearly would benefit from palliative care, such as a diagnosis of metastatic cancer (32,34). HCPs reported feeling uncomfortable initiating such conversations about palliative care research, as they perceived that it was potentially confronting for the patient or the doctor-patient relationship, resulting in gatekeeping of potential participants (32,35-37). These longstanding relationships were also a significant facilitator to patient engagement, as clinicians had a trusted relationship with the patient and a good understanding of the patient’s life and social situation, through which conversations about palliative care research might be initiated (38).

HCPs identified numerous challenges with integrating research into clinical practice, as often clinicians identified the goals of the research, or the research processes as of limited benefit to clinical care (33). As a result, clinicians reported not feeling comfortable having researchers burdening patients with these research tasks (34). Some HCPs perceived research as being a criticism of current clinical practice, or that through including patients in the research their clinical care would be ‘taken over’ by the researchers (30). When interventions and research processes helped support patient care and could be easily incorporated into clinical workflows, clinicians were keen to engage in the research (33,34,41). This ideally occurred through collaborative research design with HCPs, so that the interventions could address their clinical priorities and enabling them to feel ownership of the research (16). Having existing relationships and regular contact with the research team facilitated clinician involvement and enabled them to feel supported in this role (42).

Primary care clinicians reported lack of training and resources to participate in, and communicate with patients about research (30,31,34). These skills were deemed increasingly necessary in palliative care research, specifically around communicating the research with patients and carers, and were often not comfortable conducting these discussions (34). When dedicated training and education was made available for clinicians, they perceived it of being considerable value, improving their skills and confidence in research, and allowing HCPs to feel more supported in this role (34,42). However, when training or education was available to support their role in research, clinicians often lacked time to participate in this, or a lack of financial reimbursement (16,30,31).

Patients and carer factors

Research in palliative care was perceived as a particularly challenging area to engage with patients and carers. Some patients did not wish to engage with clinicians about discussing the end of life or palliative care, which thus impeded any discussions around research in this field (34). Other patients reported that these invitations to participate came at a time when they were feeling overwhelmed with health-related issues (31,36,38). These discussions about research often came during the advanced stage of the illness when patients felt no longer able to participate, and described a willingness to engage in these discussions earlier (31).

Patients and carers identified the long-term relationship with their GP as being important to their decision to participate it the research (35). Carers played an important role in supporting loved ones in their decision and participation in research (12). When patients and carers did participate in research, they perceived this as being supportive of their care needs (42).

Patients and carers described having a limited understanding of ‘palliative care’ prior to discussions about the research, either not having heard of it, or associating only with terminal care (31). This lack of understanding resulted in reduced interest in research participation (31). Providing information about the research prior to initial discussions assisted in informing and preparing patients and caregivers for these conversations, and made them easier to initiate (37). This information should ideally be tailored to patients, as many individuals found this information may not address misconceptions or was difficult to understand (37).

Practice factors

Challenges emerged at the practice level due to the limitations in staffing and technology resources. Research processes were often dependent on a few key staff members, and turnover of staff or illness often disrupted research tasks and hindered recruitment efforts (12,31,32,36).

Patient data available in general practice is often not ideally structured for research, as it may miss specific diagnostic information necessary for inclusion and key outcomes, due to limited correspondence from hospital and specialist providers (31,36). The incompatibility of electronic health records with study templates and requirements posed a substantial barrier to seamless research participation (35-37). However, if integrated effectively, electronic health records could not only notify healthcare providers about study eligibility but also incorporate educational resources, referral forms, and routine health assessments. This integration streamlined the recruitment process, making it more efficient and cohesive (36,40).

Health system factors

Interventional research was identified as not fitting easily within the structures of general practice. Numerous studies identified that the focus of general practice on clinical care and associated administrative tasks through which funding is largely organised, and the pressures of this workload, made fitting research within this structure challenging (30-32,36). In some settings, general practices were restricted from receiving reimbursement for research activities, creating a substantial barrier to initiating research (31).

On a health system level, many management and policy workers may have limited or no experience with research, creating further obstacles to initiating research, which may be addressed through early and ongoing discussions and collaborations with local stakeholders (16).

Research design

Designing interventional studies to fit within the work processes of general practice is key to their success. Transplanting existing interventions from specialist and hospital settings may not be appropriate, or may require substantial adjustments to design (12). Designing interventional studies to fit within the work processes of general practice, and to enhance the value of general practice care, is key to their success. The involvement of general practice HCPs in the research design enabled the development of interventions that were appropriate to general practice, and facilitated staff buy-in in the project (16,35,39). The intervention should undergo pilot testing to ensure that its design is appropriate to general practice and to optimise its implementation (16). Outcome measures and data collection tools were often not ideally suited to general practice settings, yet could be easily adapted (16). Enlisting local clinical champions greatly facilitated recruitment, project design, and overall conduct of the research (36,39).

Recruitment was identified as the major issue in general practice settings (16,32). In many types of studies, each GP cared for only a limited number of eligible patients, and thus the required number of clinical sites is much greater compared to specialist palliative care settings (16,29,32,38). In palliative care populations, these recruitment challenges are compounded by a vulnerable population with high drop-out rates (12,32). A number of studies utilised patient lists generated by the electronic medical record system for participant identification, but these were often hampered by inaccurate information (31,36,37). Patient recruitment and consent conducted by GPs was beset by numerous barriers as previously discussed, and could be impacted by gatekeeping or the relationship between GP and patient (16,32). The inset of research staff to conduct recruitment and consent was identified as a manner to overcome these barriers, minimising the work load of primary care clinicians whilst enabling the development of successful working relationships and trust between clinicians and the research team (16,38,42). However, employing research staff in this manner, combined with the costs of designing and piloting interventions specific to general practice is expensive, and accessing adequate financial resources to support this is challenging (16). Local clinical champions were important to enabling recruitment, and serving as a role model to other clinicians at each intervention site (16).

A further challenge is the requirements of ethics committees and standard research processes for institutions, which may have limited experience in conducting interventional studies at general practice sites, or whose processes may not be easily adapted to general practices (16).

Discussion

Research in general practice is indispensable, to inform and guide palliative care provision in the setting where most patients access palliative care (43). There is a broad array of factors identified in this study that affect the conduct of interventional research in general practice, encompassing health professional, patient and carer, practice, health system and research influences. Many of these factors have been identified in palliative care research in others settings, such as negative patient and carer perceptions of palliative care, competing clinical workloads of HCPs, high patient drop-out rates, HCP gatekeeping or late referral of patients, and challenges with the ethical approval process (44-46). Yet general practice contains its own unique challenges, including HCP with little experience and contact with research processes who are engaged in long-term care relationships with patients and their family which may span decades, limitations in medical information systems, constraints in financial agreements, and the limited number of palliative patients per GP. The care processes occurring in general practice are a key difference, as they may involve many different stakeholders, clinicians, patients and carers working together within multiple care processes, and differ greatly from what occurs in hospital and specialist settings (47). To design successful interventions, researchers must first understand how care is delivered, the care processes and context, and the priorities for clinicians, so that interventional changes are appropriate, realistic and address real clinical needs in general practice.

The involvement of general practice HCPs in palliative care interventions is vital in their success, as without their support through all stages of the research it is doomed to fail. There are numerous and varied health professional factors which affect research conduct; however, these factors are also the most amenable to change. These barriers are primarily related to a lack of experience and skills in research in palliative care, and a lack of input into the research design. Engaging with HCPs to design and conduct research is vital to addressing the care needs and priorities of patients and health professionals, facilitates local ownership of the research, can develop local ‘clinical champions’, and assists in upskilling staff in research. Whilst none of the included studies reported on engaging with patients and carers through research design and evaluation, evidence from other disciplines suggests that this could further strengthen the impact and acceptability of interventions (48,49). Short education sessions may have considerable impact in addressing some perceptions of palliative care and research, and enlisting local clinical champions in this education may be of significant benefit to address negative beliefs and model communication around research participation, which have greater validity when delivered by clinical colleagues. Gatekeeping is identified as a substantive barrier to research in general practice, yet these longitudinal relationships between clinicians and patients may greatly facilitate recruitment when clinicians perceive that interventions assist in meeting the care needs of patients, their clinical priorities, and feel supported to engage in these discussions.

Utilising the same recruitment plans, care processes, and implementation strategies in general practice that are employed for hospital or specialist palliative care settings is a recipe for failure, as it neglects the inherent structural differences related to general practice care. The impetus for this paper was a deprescribing study for palliative care patients in general practice which was beset with multiple challenges in engaging with clinicians and recruitment (50). The intervention, derived from a hospital care model, was simply not appropriate for general practice. Clinicians described that research should ideally support them in providing palliative care, rather than an outsourcing of care to other providers (50). They detailed a responsibility to their patients and identified a need for further support to optimally provide this care, and hoped that research could support them and these care processes. The intervention did not fully appreciate the longitudinal nature of care relationships that are central to general practice, rather than the episodic nature of inpatient hospital care. The work of Chapman et al. has articulated this phenomenon in dementia care, where the care network is a complex system, that responds to the evolving perturbations of illness (51). Care occurs through these relationships, and thus to isolate and refer specific care processes to other health practitioners can disrupt the nature of this care.

Research in this setting is largely a foreign concept, with primary care clinicians often having limited exposure and research skills, and care processes that may be challenging in which to imbed research. This is in many ways a cultural challenge, as most researchers are trained within tertiary care settings (i.e., large teaching hospitals), and the processes which guide research conduct and ethics are focused on this context. Researchers must first assess the cultural landscape, the context of illness and needs of patients, and the care priorities for clinicians, so that interventional changes are appropriate, realistic and address real clinical needs in general practice. In some settings, each general practice clinic may be considered a separate recruitment site, and thus require separate research infrastructure, monitoring and auditing, and documentation. Ethics committees may also be unfamiliar with research in general practice and apply a similar approach to research initiated in the hospital setting. It may be prudent to engage early with research committees around these requirements, to work together to identify how they can be adapted for the general practice settings, to discuss potential solutions. Sharing experiences with other researchers working in general practice settings may provide practical solutions and tips to assist with these challenges.

Limitations and strengths

A narrative review was conducted due to the heterogenous nature of research in this field. The search strategy was limited to English and the MEDLINE database, and as a result, this literature does not aim to represent a conclusive synthesis over every study in this field. This is consistent with the aim of a narrative review, as a summary of a broad range of literature related to a subject (20). Narrative review methods were chosen in order to explore the (expected) heterogenous and emerging literature in this field, integrating these data into a coherent narrative (18,52). A quality appraisal of the included studies was not conducted, consistent with the methodology of a narrative review (52). General practice is subject to substantial variability between countries which may limit the generalisability of these results.

Implication of the results for future research

The major implication from this study is the need for researchers to appreciate the different context of general practice when planning interventional studies, to understand the different care processes and perceptions, and embed these into research design in collaboration with general practice HCPs. Incorporating these initial steps into the funding proposals is instrumental to successful research, however, does add considerable time and costs to the project (16). Patients and carers are key stakeholders in interventional research, and exploring opportunities to enhance their participation may increase impact and success (49).

Attention should also be directed towards how general practice teams can be better supported to engage in research, and education and training to enhance their research skills. Further research might identify their needs specific to palliative care research, with the potential to develop training from these findings.

Conclusions

Interventional research in general practice settings remains uncommon, but is vital towards improving palliative care provision internationally, as it is the setting where most patients access palliative care and prefer to die (9). There are wide variety of factors which may influence research conduct and thus the eventual outcome of research in primary care, which should be incorporated into the research plan to maximise success. These factors may be related to those in specialist palliative care settings, but may also be specific to general practice. Engaging and designing interventions with clinicians and patients to meet their needs and priorities, and understand the local context and processes of care in general practice is a vital first step. Palliative care interventions in general practice are challenging and complex, yet through working together with clinicians, patients, and carers to develop and implement appropriate interventions which are contextually appropriate, we can succeed in producing much needed evidence required to improve general practice palliative care, resulting in better quality of life and death at home.

Acknowledgments

Funding: None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-587/rc

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-587/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-587/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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