Outcome Measurement In Palliative Care The Essentials

Chapter 1Outcome measurement and palliative careWhat outcome measurement isOutcome measurement is a way ofmeasuring changes in a patient’s healthover time. An outcome can be describedas “the change in a patient’s current andfuture health status that can be attributedto preceding healthcare”.1 Outcomemeasurement involves the use of ameasure to establish a patient’s baselinehealth status, and then evaluating changesover time against that baseline. Outcomemeasures help to record these changes.By using these measures it is also possibleto measure the structure, process andoutput of care. However, outcome is whatdirectly affects the patient and their family(Figure 1.1), and this is what we focus onin this guidance.Why it is important to measureoutcomesOutcome measures are widely used inhealth research to describe patientpopulations or to assess the effectivenessof interventions, but they are not, as yet,always incorporated into routine clinicalpractice.3 However, with the increasingfocus on patient autonomy, equitableservice delivery and transparentinformation compelling service providers,healthcare commissioners and funders todemonstrate effectiveness and value formoney, outcome measurement isbecoming a more important procedure toconsider. In addition, funding fromgovernments or commissioners isbecoming more often a condition for on-INPUT/STRUCTUREPROCESSOUTPUTWhich resources arerequired or used?How are theresources used?Productivity orthroughputStaff, equipment,consumables (i.e.,syringe drivers, drugs)Prescription of drugs,use of syringe drivers,staff visits, staffmeetings/clinics,information etc.Discharge rate, dayhospice attendance,number of drugs/opioids, number ofconsultations, completed care plans etc.going provision of outcomes data.4 The useof outcome measurement is thereforebecoming increasingly important inhealthcare, both in general and in palliativecare in particular.Accountability to patients, fundersand governments is another driving forcein terms of outcome measurementactivity in healthcare, with serviceproviders being required to demonstrateefficiency and high-quality care. Palliativecare services need to have a genuineinterest in using outcome measures inorder to enhance quality assurance,maintain on-going quality improvementand strengthen the learning capacity ofthe organisation. Service providers,commissioners and funders also have anOUTCOMEChange in healthstatus or quality oflife attributable tohealth careChange in pain levels,improved quality oflife, decreasedanxietyFigure 1.1 A palliative care example regarding the sequence involved in outcome measurement (adapted from Higginson and Harding 20072)324

ethical responsibility to ensure thatvulnerable patients and their families,such as those requiring palliative care,receive services that effectivelycontribute to their well-being and qualityof life, despite advanced disease.How outcomes are measuredAs outcomes in healthcare are related topatients’ experiences, patients are themain source of information concerningchanges in their health status, quality of lifeor symptoms.These outcomes can bemeasured using a variety of tools, forexample Patient-Reported OutcomeMeasures (PROMs or PROs), which arequestionnaires or instruments used tocapture these changes.How outcome measures are used inpalliative careOutcome measures are used for assessing,measuring, evaluating or monitoring arange of different aspects of healthcare.There are three main purposes behind theuse of outcome measures: clinical care,audit and research.The type of outcomemeasure used will be dictated by thepurpose.In clinical care, outcome measures canbe used to:4 establish patients’ baselines (forexample, baseline pain level,existential distress or spirituality);4 assess patients’ symptoms, as well asfamilies’ and patients’needs/problems;4 monitor changes in patients’ healthstatus or quality of life;4 facilitate communication withpatients/families and the healthcareteam;4 aid clinical decision making;4 evaluate the effect of interventions,care or services.For clinical purposes, outcome dataare usually recorded in the patient’s clinicalrecord and shared amongst team membersto promote cohesive, co-ordinatedpatient-centred care (see Chapter 4).Thistype of data may also feature in case studyreports and publications, or within reportsto funders in relation to funding care forindividual patients.Audit is a systematic approach toevaluating quality or performance inhealthcare. It involves setting orestablishing standards, monitoring orobserving performance or practice, andthen evaluating what was done inrelation to the standard identified. Aclinical audit focuses specifically onclinical care, but audit projects can alsobe broader in their focus, for example,the practices within organisations ordepartments may be examined in anorganisational audit.For the purposes of audit, outcomemeasures can be used to:4 establish standards of practice inparticular departments (for example,in medicine, nursing, social work,physiotherapy or music therapydepartments), or within palliativecare teams or organisations;4 assess the care given againstestablished standards, with the viewto improving standards;4 determine uptake of service;4 benchmark or compare standards ofpractice in one organisation withanother organisation.The main aim of research is tounderstand the patients’ situations betterand improve their care.To demonstrateresults, measurement of outcomes iscrucial.Therefore, the use of outcomemeasures and, increasingly, patientreported outcomes is an intrinsic part ofresearch and researchers are often muchmore familiar than clinicians with the useof outcome measures.For the purposes of research,outcome measures can be used to:4 screen whether patients meet inclusioncriteria for a study;4 assess patients’ functional status;4 measure or describe patients’symptoms, quality of life and quality ofcare;4 monitor changes in patients’ healthstatus or quality of life;4 evaluate the effect of interventions,care or services.Outcome measurement data for researchare usually presented in a summed oraggregated manner. Patients andorganisations are not usually identified, andfindings may be published for widedissemination.334Outcome is whatdirectly affectsthe patient andis what we focuson in thisguidance

Practical and ethical challenges ofoutcome measurement in palliativecarePatients in palliative care have uniqueneeds. The illness trajectory in palliativecare, for example, poses a challenge tooutcome measurement as patients’ healthwill deteriorate and symptoms willprobably worsen. This deteriorationmakes the detection of health-relatedoutcomes challenging. At the very least,deterioration in physical health isexpected, and changes in cognitiveabilities are also likely to occur closer tothe time of death. These challengesinfluence what type of outcome measurecan be used, who they can be used withand when they can be used. For example,PROMs are impossible to use closer tothe time of death once the patientbecomes unconscious.Ethical considerations also play animportant role in enabling outcomemeasurement in palliative care. Forexample, is outcome measurement datasufficient for determining what care isneeded for patients at the end of life?Should outcome measures be used forsymptoms that are difficult to report?How often should symptoms bemeasured when patients might ratherspend time with loved ones before theirdeath? If there is no valid outcomemeasure to use, should we just notmeasure at all?To aid the development andimplementation of outcome measurementin palliative care, an international expertmeeting was convened in 2010 byPRISMA5 (see Introduction). The groupagreed on the following:4 Standardisation and agreement of acore set of tools in palliative careneeds to be based on rigorousscientific criteria, rather than byconsensus only. Standardisationneeds to be balanced with diversityand flexibility.4 Training, support and resources foroutcome measurement for clinicalcare, audit and research arerequired for palliative care cliniciansand researchers.These could beweb-based, printed materials orface-to-face training sessions.Thetraining needs to include how tochoose an outcome measure, alongwith information and practicalstrategies on implementing outcomemeasures in organisations, and howto analyse and interpret findings.4 When translating outcomemeasures for use in other countries,it should not simply be a literaltranslation of the tool. Instead itshould encompass the process oflearning what things mean: theheuristic process of meaning.Themeasures need to have the samemeaning and impact in differentcultures and languages. Culturalcompetencies and local differencesmust be taken into account whentranslating outcome measures foruse in palliative care.4 A multi-professional approach isrequired in outcome measurementin palliative care, and the differentcompetencies of the professionalgroups involved in palliative caremust be acknowledged. Nursesshould be involved in thedevelopment of outcome measuresin order to aid successfulimplementation of the measures inclinical care.KEY POINTS4 Outcome measurement is a way ofmeasuring changes in a patient’shealth (which can be attributed topreceding healthcare) over time.4 It can be used to improve thequality of healthcare services.4 Outcome measurement can be usedfor clinical care, audit and researchpurposes.4 There is an increasing need forrobust outcome measurement inthe field of palliative care, but thisposes particular challenges andrequires special consideration withregard to patients’ situations at theend of life.344Further readingPalliative care4 Davies E, Higginson IJ, eds. Palliative care:the solid facts. Copenhagen,WHORegional Office for Europe, ons/Catalogue/20050118 2,accessed 1 December 2010).4 Davies E, Higginson IJ, eds. Better palliativecare for older people. Copenhagen,WHORegional Office for Europe, ons/Catalogue/20050118 1,accessed 1 December 2010)4 Harding R, Dinat N, Sebuyira LM.Measuring and improving palliative care inSouth Africa: multiprofessional clinicalperspectives on development andapplication of appropriate outcome tools.Prog. Palliat. Care. 2007;15:55-9.Use of outcome measures4 Dawson J, Doll H, Fitzpatrick R, JenkinsonC, Carr A.The routine use of patientreported outcome measures in healthcaresettings. Br. Med. J. 2010;340:c186.References1 Donabedian A. Explorations in qualityassessment and monitoring. Ann Arbor,Mich.: Health Administration Press; 1980.2 Higginson IJ, Harding R. Outcomemeasurement. In: Addington-Hall JM,Bruera E, Higginson IJ, Payne S, editors.Research methods in palliative care.Oxford, New York: Oxford UniversityPress; 2007. p. 99-110.3 Gruenewald DA, Higginson IJ,Vivat B,Edmonds P, Burman RE. Quality of lifemeasures for the palliative care of peopleseverely affected by multiple sclerosis: asystematic review. Mult. Scler.2004;10(6):690-725.4 Department of Health. Equity andexcellence: liberating the NHS.TheStationery Office; 2010.5 Harding R, Higginson IJ. PRISMA: A panEuropean co-ordinating action to advancethe science in end-of-life cancer care. Eur.J. Cancer. 2010;46(9):1493-501.

Chapter 2Choosing and using outcome measuresChoosing an outcome measureA huge variety of outcome measures existin palliative care.They differ in the domainsand dimensions they measure, and in theirlength, accessibility and cost.This diversitymakes the selection of a measurechallenging. Ideally, original literature (forexample, publications about thedevelopment of the measure) about aspecific outcome measure and studies onthe validation of that measure should bereviewed to inform one’s choice. However,as this is often not practical for clinicians,review articles (which systematicallyidentify, appraise and synthesise theevidence) about outcome measures canhelp to get an overview of the necessaryinformation.When deciding which measure to use,the aims and the reason for using anoutcome measure should be taken intoconsideration.This includes consideringthe context of the outcomemeasurement, that is, whether data will beroutinely collected in clinical care, foraudit purposes or within a research study(see Chapter 1). For example, for clinicalcare, short, widely accepted measuresmight be more practical; whereas inresearch, a series of measures may beneeded. Relevant questions to ask whenchoosing an outcome measure are shownin Figure 2.1.What is theaim of use?What willhappen tothe data?What typesof PROMs areavailable?How often willthe outcomemeasure beused?What are thedomains anddimensions?Who will fillin the outcomemeasure?What is thedisease group/condition?Figure 2.1 What to consider when choosing an outcome measure354

Types of PROMs in palliative careGeneric versus specificSingle item versus multiple itemsGeneric or specific outcome measures canbe used within palliative care. Genericmeasures are multidimensional measuresthat include physical, psychological andsocial health components.They are able tobe used on a large range of health andquality of life concepts, and in varioushealth conditions, populations andinterventions. Specific measures arespecially designed for particular domains,health conditions, signs and symptoms,body parts or populations (see Table 2.1).Outcome measures that use single-itemscales measure a concept of interest using asingle question. For example, the severity ofa symptom such as pain can be measuredby asking a patient to rate the severity on ascale from 0 (‘no pain’) to 10 (‘worst pain Ican imagine’).The endpoints, which are alsocalled ‘anchors’, need to be clearly definedbut can vary in the wording. If just twoendpoints are provided on a continuousline (normally 10 cm), this is called a visualanalogue scale (VAS).When using a VAS, thepatient marks a point between the twoendpoints where the patient rates the pain(see Example 2.1).The actual value is thenTable 2.1 Type of outcome measuresGeneric measuresAdvantagesDisadvantagesExamplesSpecific measures4applicable across a broad population forcomparing different conditions;4large range of domains;4can compare palliative treatment withother treatments.4specifically developed to measure outcomes inpalliative care;4for use in specific conditions or domains (forexample, symptoms, function, palliative careneeds);4more responsive to clinically meaningful changes.4often lack responsiveness to change;4not validated in palliative care;4do not allow specific problems to be identified.4do not allow direct comparison with datacollected from another patient group.4SF-3614EuroQol (EQ-5D)24General Health Questionnaire (GHQ)34Sickness Impact Profile44Palliative care Outcome Scale (POS)54Hospital Anxiety and Depression Scale (HADS)64Edmonton Symptom Assessment Scale (ESAS)7Example 2.1 - Visual analogue scale (VAS)010No pain at allWorst pain I can imagineExample 2.2 Numerical rating scale (NRS)012No pain at all345678910Worst pain I can imagine364

measured using a ruler. If the line hasnumbers in between (for example, from 0to 10, as shown in Example 2.2), this iscalled a numerical rating scale (NRS).There can sometimes be problemsusing a VAS with palliative care patientswho are very ill, as they need to be able tosee the scale. Patients may need to putglasses on and sit up to fill in the VAS.Using numerical scales can mean morepatients can take part as they do not needto see the scale in order to answer thequestion.Outcome measures that use multipleitem scales combine various questions on aspecific area.They are more complex todevelop, and can be more burdensome forpatients but they are often more effectivein describing a multidimensionalphenomenon.Domains and dimensionsMost outcome measures cover variousdomains and dimensions. Domainsdescribe the scope of an area of interest;dimensions relate to measurablequantities or particular aspects of aproblem. Outcome measures in palliativecare can cover several domains, forexample, the patient, family and carers, orquality of care, as well as physical,psychological, social or spiritualdimensions (see Figure 2.2).The choice ofa measure depends on which outcomeneeds to be measured, for example,individual symptoms, palliative care needsor quality of life.The patientA patient’s experience can be related tophysical (for example, symptoms andfunctional status), psychological (forexample, cognition and emotions), socialand cultural (for example, family andfriends, organisational and financial), andspiritual (for example, beliefs, meaning andreligion) domains, which are allinterlinked. As palliative care aims toprovide holistic care for patients andfamilies, an outcome measure shouldideally cover several of these domains, aswell as aspects of care. Some examplesfor this are given in Table 2.2.A large number of outcome measureshave been developed to measure specificphysical dimensions, for example,symptoms such as pain, breathlessness orfatigue.These measures give a more indepth view of the problem and, as they arevery specific, it is likely that they are moreoften used in research rather than clinicalcare. Psychological symptoms, such asOutcomemeasures inpalliative carecan coverseveral domainsExample 2.3 Domains and dimensions of outcome measures in palliative care (adapted from Mularski et al PatientCarer well-beingGrief and bereavementCarer burdenCarer/familyQualityof care374Advance care planningContinuity of careSatisfaction and quality of care

Table 2.2 Examples of multidimensional outcome measures in palliative careOutcome measureNumber of itemsCompletion timeAdditional commentsPalliative careOutcome Scale(POS)510 items on physical symptoms,emotional, psychological andspiritual needs, provision ofinformation and support1 open question on mainproblemsmean time 6.9 min(patients) and 5.7 min(staff);repeated assessments ofpatients and staff meantime 4 min5scores from 0 (‘no effect’) to 4(‘overwhelming’): patient, staffand carer version; widely usedpalliative care measurefreely available after registrationPOS-S Symptom list10 symptoms2 questions about the symptomthat affected the patient the mostand that has improved the mostfew minutesscores from 0 (‘no effect’) to 4(‘overwhelming’); additionalsymptom versions availablefor other conditions (POS-S MS,POS-S renal); freely available afterregistrationDistress Th

to palliative care issues.Recently,a workgroup from Boston has demonstrated the benefit of early access to palliative care,which improved not only the quality of life and reduced the costs of treatment, but also increased survival times.This has reinforced the need to start palliative care early,and not restrict it to end-of-life care.