Research Flashcards
Ethics in palliative care research
- validity
- value
- benefit to subjects
- crossover design so subjects more likely to benefit
- better than RCT? placebo vs control
- minimization of risks to patients
- ensuring capacity to make decisions difficult
- protecting voluntariness
Validity and Value
Validity
- valid study design adn analysis
- intend to produce knowledge that can be generalized
Value
- studies must offer value
- likelihood that results will improve well being and health
Benefit to research subjects
- crossover design more beneficial as subjects more likely to benefit
- descriptive studies can give a more careful description of pain, for ex
- open label extension or reduced rate so that patient can access once trial is over
Minimizing risks and burdens
- minimize unneccessary interviews, investigations, study visits
- placebo
- is this ethical in end of life?
- access to alternative rescue medications
- sham procedures - ethical?
- must be low risk
- crossover design can mitigate concerns about patient access
Consent and capacity
- high prevalence of cognitive impairment
- comorbidities may impact capacity
- may require formal assessment to ensure consent
- SDM and patient’s assent
- anticipate possibility of loss of capacity or fluctuating
PRotecting voluntariness
- ensure enrolment is voluntary with knowledge of available alternatives
- option to withdraw at any time
Needs in future palliative care research
- sufficient sample size population
- national and international funding
- training of clinicians and scientists in palliative care research
Steps in planning a research study in palliative care
- Describe the clinical problem
- Discuss relevance and validity
- Carry out comprehensive literature review to assess prior knowledge
- Formulate research question and ensure aim is clear, precide and specific
- Define patient population
- Decide on study design
- Decide on outcomes to be measured
- Write protocol
List key components of evidence based medicine
- best research evidence
- clinical expertise
- patients values and experiences
List the types of studies in order of best evidence to worst evidence
- RCT
- pseudo RCT
- cohort study
- case control study
- case study/case series
Critical appraisal
- Assess the patient / problem
- Ask the question
- Acquire the knowledge (lit review)
- Appraise - is the evidence valid and applicable?
- Apply - talk with patient, integrate evidence, clinical expertise
- Evaluate - evaluate the patient’s outcomes and performance
Barriers to Evidence Based medicine in palliative care
- paucity of evidence
- limited research skills in palliative care
- lack of motivation
- lack of funding!
P Values
- probability of finding a difference in treatment effect by chance alone when there is no true effect
- < 0.05 is significant
- Type 1 error
Qualitative research
- Aims to understand lived experience
- interview, focus groups
Grounded theory in Qualitative research
- analytical categories to look at relationships between them
- social processes
- Observation
- focus groups
- interviews
- explores attitudes and beliefs
Ethnography in qualitative research
- aims to understand social world of people from cultural perspective
- Observation
- Interviews
- Documentary analysis
- case studies
What are the limitations of using proxys in pall care research?
- HCP overestimate anxiety, distress
- pain underestimated by HCP
- proxy rating more accurate for very concrete observable things
- QOL very subjective and personal
What are domains in QOL at EOL?
- symptom management
- avoiding prolongation of dying
- sense of control
- relieving burden
- strengthening relationships between loved ones
Health services research : definition?
- study how social factors, financing systems, organizational structures affect:
- access to care
- quality of care
- cost of care
- health outcomes
List dimensions of care relevant to quality
- effectiveness
- acceptability
- efficiency
- access
- equity
- relevance
Audits in palliative care - common types
- Key indicators
- Topic review
- Random case review
- Patient/family satisfaction
- Adverse patient events
List common resources for palliative care on internet
- Canadian Virtual Hospice
- Cochrane Library
- Up to date
- Careserach.com.au