Importance of patient reported outcomes Flashcards
Cancer Survivorship
By 2030, it is projected that over 3 million people will be living with a cancer diagnosis nationally.
“The health and life of a person with cancer post treatment until end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get healthcare and follow-up treatment, late effects of treatment, second cancers, and quality of life”. (National Cancer Institute)
Medical and Psychosocial concerns of cancer patients
Report defined conceptual quality of life model with four domains:
- physical well-being
- psychological well-being
-social well-being
-spiritual well-being
Four essential components of survivorship care
- prevention of recurrent and new cancers, and of other late effects*
- surveillance forcancer spread, recurrence, or second cancers and assessment of medical and psychosocial late effects*
- intervention for the consequences of cancer and its treatment*
- coordination between specialists and primary-care providers to ensure that all of the survivor’s health needs are met*
How many cancer patients and survivors actually have physical, psychological, informational and supportive care needs that are met within the healthcare systems?
Evidence suggests under 2/3rds
Why is outcome measurement important?
- New strategy has emerged in healthcare: “achieving the best outcomes for the lowest cost and thus maximising value for patients”.
- Concept of value-based healthcare.
- The only true measure of quality are the outcomes that matter to patients.
- Value is created by improving the outcomes of patients with a particular clinical condition over the full cycle of care.
Value based healthcare (VBHC)
- Innovative model which is being implemented across various healthcare systems.
- Aims to promote the continuous improvement of healthcare systems through outcome assessment for a given level of cost.
- This approach signifies a shift in healthcare towards a patient-centred system organised around the patient’s needs.
Improving value requires either:
Improving one or more outcomes without increasing costs.
OR
Lowering costs without negatively affecting outcomes.
This approach signifies a shift in healthcare towards a patient-centred system organised around the patient’s needs.
Clinical outcome assessment (COA)
Tools or instruments used to evaluate the impact of a medical intervention or treatment on patients’ symptoms, functioning, health-related quality of life and overall well-being.
Refers to the measurement of a patient’s health status or treatment response based on their own perceptions, observations, or reports.
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It is the overall results that matter, not the outcome of an intervention or a single visit or care episode.
Example: if a surgery is performed flawlessly but the patient develops post-operative infection, then the outcomes would be negatively affected and the costs of care would increase.
4 types of Clinical Outcome Assessments (COAs)
1.Clinician-reported outcome measures (ClinROs)
2.Observer-reported outcome measures (ObsROs)
3.Performance outcome measures (PerfOs)
4.Patient-reported outcome measures (PROMs)
ClinROs (definition + example) aka Clinician-reported outcome measures
Evaluations or assessments of patient health status, symptoms, functional abilities etc that are completed by healthcare professionals.
Based on the observations and clinical judgements of the healthcare professionals.
Examples:
Karnofsky Performance Status Scale
Hamilton Rating Scale for Depression
ClinROs key characteristics
Rely on the clinical judgement and expertise of healthcare professionals.
Can include both objective and subjective measures:
- Objective measures: vital signs, laboratory results
- Subjective measures: clinician-rated pain, depression, etc based on interactions with patients.
Usually use standardised assessment tools, clinical guidelines etc to ensure consistency and reliability.
Typically conducted in context of clinical care – during ward rounds, routine follow-up appointments, medical examinations.
ObsROs (definiton + example) aka Observer-reported outcome measures
Assessments of patient health status, behaviour or functioning, that are completed by individuals who observe the patient’s behaviour or activities.
Assessment made by:
caregivers
family members
trained observers
–> those with regular contact with the patient and can provide insight into the patient condition
Example:
Behavioural Assessment Scale for Children
Key characteristics of ObsROs
Involve the observation and documentation of a patient’s behaviour, symptoms or functional abilities by individuals with direct contact or interaction with patients.
Allow third party perspective on aspects of a patient condition that may not be apparent to the patient themselves.
Objective and subjective components:
- Objective: physical signs, behavioural observations.
- Subjective: caregiver related pain intensity etc.
PerfOs (definition + example) aka Performance outcome measures
Assessments used to evaluate a patient’s ability to complete specific tasks or activities related to their health status or functional abilities.
Involve objective evaluations of a patient’s performance, conducted by HCPs, caregivers or trained assessors.
Examples:
* Timed up and go tests
* Grip strength tests
* Balance assessments
Key characteristics of PerfOs
Task or activity based – assess a patient’s ability to complete specific tasks, activities or functional tests relevant to their health condition or treatment goals.
Objective evaluation – involve direct observation or measurement of patient’s performance by trained assessors using standardised protocols, scoring criteria or assessment tools.
Functional assessment – focus on assessing functional abilities such as mobility, cognitive function, balance, strength, coordination, communication etc.
PROMs (definition) aka Patient-reported outcome measure + health-related quality of life
Assessment of a patient’s own health status, symptoms, or functional abilities that are directly reported from the perspective of the patient themselves.
Without interpretation or modification by healthcare professionals.
Capture patient perspectives on their own health and well-being.
Provide valuable insight into patient preferences, experiences, and treatment outcomes.
aka Health-related quality of life:
- Patient quality of life has emerged as a fundamental objective of cancer care.
- Facilitate an understanding of the impact of disease at an individual patient level.
- High quality clinical care now requires cancer patients to provide information to their clinical teams on how they are feeling, disease symptoms, and treatment side effects.
PROMs key characteristics
- Health-related quality of life usually assessed using patient-reported questionnaires, or patient-reported outcome measures (PROMs).
- Standardised, validated questionnaires completed by patients to indicate their perception of their own HRQoL.
- Self-report instruments used across the treatment landscape.
Better understand efficacy and efficiency of specific treatments.
Provide insight into patient perceptions of general health or health in relation to a specific disease.
Differentiated from patient experience instruments (PREMs)
Two categories of PROMs
Generic: designed to measure patient’s perceptions of their general health.
- Measure the well-being of an individual based on certain dimensions; generally relating to measures of physical and social functioning, pain, anxiety or depression
(not about disease or treatment but designed to be applied to the general population)
Examples: hospital anxiety and depression scale, EQ-5D, SF-36, brief pain inventory, female sexual function index
Disease-specific: developed to indicate perceptions of health in relation to specific conditions or diseases.
- Include questions which are sensitive to small changes in health-status that are related to a given disease, disability or surgery.
- Ability to detect subtle changes in health or functional status
Examples: EORTC QLQ-C30, FACT-G, EORTC QLQ-OV28, FACT-O, EORTC QLQ-CX24
Current status of PROMs
- Routine use of PROMs currently limited to research and randomised controlled trial setting.
- PROMs used in this context to monitor health
status and QoL before, during, and after experimental treatments. - Used to assess whether the survival benefits of a specific treatment may outweigh any potential side effects
OR
- For choosing between treatment options which offer similar survival benefit.
Evidence supporting use of PROMs in routine clinical setting
1.Compiled PROM data can be used to inform patients about the benefits and side effects of different treatment regimens.
2.Used to facilitate shared decision making.
3.Baseline and subsequent follow-up PROM collection can be used to assess disease progression and monitor effects of treatment.
4.Help patients highlight symptoms that patients may otherwise had not thought to raise with clinical teams.
5.Used to identify poor performance and poor clinical practice in healthcare settings. Outliers or lower than anticipated improvements in PROM scores can be used to develop clinical improvement programmes.
PROMs prognostic function
Lack of data on the use of PROMs to improve patient health outcomes
Emerging evidence suggest a potential role for PROMs as independent prognostic tools
May provide clinicians with a more valid and comprehensive understanding of patient disease (when used together with clinico-pathological factors).
Rationale for implementation of routine collection of PROMs in cancer clinical settings?
Value-based healthcare.
Unmet needs of cancer survivors.
Shared decision-making.
Benchmarking and auditing.
Predicting patient outcomes.
What is needed to implement PROMs in cancer clinical settings
Administrative support.
Integration with electronic health records.
Education materials for patients
Ensuring PROMs are accessible to all patients.
Tailored training programmes for HCPs.
Consensus at a national level on what PROMs to collect and when they should be collected.
Consensus on trigger points, or PROM scores, that flag where further clinical management is required.
How to implement PROMs in cancer clinical settings
Various on-going initiatives at an international level to implement routine PROM collection in clinical settings.
PROM implementation is a priority of the NHS in line with value-based healthcare initiatives.
Discipline of Implementation Sciences.
Identifying barriers and/or facilitators to routine PROM collection.
Practical and logistical processes to address.
