Domain
Service
Individual participant’s demographics*
Caregiver*
Clinical population referred
Descriptors
Funding
Study type
Healthy volunteer
X
Efficacy randomized controlled trial (RCT)
X
X
Other clinical intervention trials including effectiveness RCTs
X
X
X
X
Health services research (including intervention trials)
X
X
X
X
X
Cohort studies
X
±
X
X
X
Qualitative
X
X
±
±
Best supportive care
X
X
X
X
X
Different populations and study designs will be described most effectively by using the domains that apply directly to them (Table 8.1). For example, a pharmacokinetic study of a medication used in palliative care using healthy volunteers does not need to reflect the health or social system in which the study is conducted. Studies focusing on interventions to support caregivers more effectively will rely heavily on social service funding and models of care together with basic demographics of the caregivers. Unless some other way of accessing caregivers is available, the characteristics of patients referred to the specialist hospice or palliative care service is still very important to report.
In the light of a review of what is actually published in palliative care research, a series of sub-domains is proposed that covers the key descriptors of services and populations to aid in the application of new research. This work, like the development of the CONSORT statement, is an evolution but represents the fields that are most likely to be of value to researchers, clinicians and policy makers (Table 8.2).
Table 8.2
Checklist to improve the ability of clinicians and service planners to apply hospice or palliative care research to their setting
Domain | Sub-domain | Measure | Population… | ||
|---|---|---|---|---|---|
…Reported in this study | …In my service | ||||
Patient’s demographics | Age Gender Socio-economic indices Ethnicity | Mean (standard deviation SD, median, range) Percentage A nationally accepted index Country of birth (to highlight groups with known poorer access) | |||
Caregiver# | Caregiver availability | Percentage of patients without an identified caregiver | |||
Service | Clinical population referred Descriptors | Life-limiting illness Performance status Time from referral until death | Cancer/noncancer AKPS* or ECOG** Mean (SD), median (range) | Study setting Basis for referral | Inpatient, community, outpatient, combination Prognosis ± diagnosis ± needs |
Health and social policy | Health care funding mechanisms | Universal coverage, user pays, etc. | |||
Research | Primary outcome measure in study | Study outcome measures validated in the target hospice or palliative care population | Yes/no | ||
Applying the Process
There is one more crucial application of this process. When “best supportive care” is used as a comparator arm in oncology clinical trials, there is wide variation in what is meant by the term and what is offered in the trial setting in clinical practice (Cherny et al. 2009). These variations are seen between studies, between sites in studies and potentially even within sites in the clinical study context. This checklist can help to describe the key characteristics of the population seen and the services delivered to trial participants. More importantly, this checklist may also be a way of helping researchers to standardize more easily the best supportive care that is offered in clinical trials.
Conclusion
Hospice and palliative care services around the world are based on referral from other clinical services. Because of a lack of standardization in who should be referred, populations ultimately referred can differ widely. These variations are amplified because the actual service to which people are referred may be structured in many different ways even within the same health system’s funding model. Describing key characteristics of patients and caregivers, and the service to which they are referred in the context of their health system may help researchers describe their work, and clinicians and policy makers apply the findings in a more informed way. Facilitating uptake of research is a key to improving the quality of care that is given across the whole population. Such a discipline-specific process complements methodological checklists such as CONSORT.
References
Abernethy, A. P., & Currow, D. C. (2008). Culture and financing influence palliative care services, study populations, and generalizability of research findings [letter]. Journal of Palliative Medicine, 11(2), 146.PubMedCrossRef
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