Charlotte Kingsley|Sneh Patel
Patient-reported outcome measures and patient-reported experience measures
Royal Free London NHS Foundation Trust|University College London Hospitals NHS Foundation Trust|University College London
key pointspatients perceptions health experiences key providing excellent patientcentred carepatientreported outcome measures proms questionnaires measuring patients views health statuspatientreported experience measures prems questionnaires measuring patients perceptions experience whilst receiving carethe data sets used research quality improvement projects clinician performance evaluation audit economic evaluationlimitations proms prems questionnaires must considered implementing tools patients perceptions health experiences key providing excellent patientcentred carepatientreported outcome measures proms questionnaires measuring patients views health statuspatientreported experience measures prems questionnaires measuring patients perceptions experience whilst receiving carethe data sets used research quality improvement projects clinician performance evaluation audit economic evaluationlimitations proms prems questionnaires must considered implementing tools improving quality service patient outcomes important focus health care providers nhs outcomes framework improve quality care broadly divided clinical effectiveness safety patient experience1nhs outcomes frameworkhttpswwwenglandnhsukresourcesresourcesforccgsoutfrwrk2google scholar increasing support use patientreported outcome measures proms patientreported experience measures prems measuring quality care across three areas guide service improvement proms tools used measure patientreported outcomes pros proms standardized validated questionnaires completed patients perioperative period ascertain perceptions health status perceived level impairment disability healthrelated quality life2monmouth partners guide patient reported measures theorylandscape useshttpwwwmonmouthpartnerscomassetspdfa20guide20to20patient20reported20measurespdfgoogle scholar allow efficacy clinical intervention measured patients perspective questionnaires given patients pre post operatively allow comparison outcomes pre post procedure3black n varaganum hutchings relationship patient reported experience prems patient reported outcomes proms elective surgerybmj qual saf 2014 23 534542crossref pubmed scopus 137 google scholar addition outcomes relating interventions proms measure patients perceptions general health health relation specific disease proms means measuring clinical effectiveness safety3black n varaganum hutchings relationship patient reported experience prems patient reported outcomes proms elective surgerybmj qual saf 2014 23 534542crossref pubmed scopus 137 google scholar proms classified either generic disease specific generic tools measure variety aspects broad range medical conditions allowing overall evaluation care quality life cost effectiveness interventions4weldring smith sm patientreported outcomes pros patientreported outcome measures promshealth serv insights 2013 6 61crossref pubmed scopus 208 google scholar disease specific proms allow individual aspects condition impact outcome examined2monmouth partners guide patient reported measures theorylandscape useshttpwwwmonmouthpartnerscomassetspdfa20guide20to20patient20reported20measurespdfgoogle scholar combination two types proms often used eq5dtm discussed detail later example proms tool see fig 1fig 1eq5dtm eqvastm combined questionnaireview large image figure viewerdownload pptfig 1eq5dtm eqvastm combined questionnaireview large image figure viewerdownload ppt prems gather information patients views experience whilst receiving care indicator quality patient care although measure directly prems commonly form questionnaires contrast proms prems look outcomes care impact process care patients experience eg communication timeliness assistance differ satisfaction surveys reporting objective patient experiences removing ability report subjective views prems classified either relational functional relational prems identify patients experience relationships treatment eg feel listened functional prems examine practical issues facilities available care measure relational questionnaire example prems tool see fig 2 information gathered proms prems number uses research quality improvement projects audit economic evaluation data gathered helps improve focus patientcentred clinical management also provides vital feedback health care providers allow comparisons clinical care proms provide insight impact intervention therapy patient whilst prems provide insight quality care intervention two often used parallel present patients perceptions process outcome care black et al3black n varaganum hutchings relationship patient reported experience prems patient reported outcomes proms elective surgerybmj qual saf 2014 23 534542crossref pubmed scopus 137 google scholar shown positive correlation experience outcomes patients distinguish clinical effectiveness safety experiences patient outcomes increase patients experience ratings 10 similarly improving patient experience ratings cause 3 improvement outcome scores5black n proms england progress challengeswwwhealthcareconferencesukcouknewnewsfilesnickblack364pdfgoogle scholar highlights inherently linked proms prems importance helping provide superior quality care choosing right questionnaire may hard developing new one even challenging systematic review barnett et al6barnett sf alagar rk grocott mp giannaris dick jr moonesinghe sr patientsatisfaction measures anesthesia qualitative systematic reviewanesthesiology 2013 119 452478crossref pubmed scopus 91 google scholar found number questionnaires existed measure proms prems perioperative period many however lacked appropriate psychometric testing design able determine validity measures patient satisfaction6barnett sf alagar rk grocott mp giannaris dick jr moonesinghe sr patientsatisfaction measures anesthesia qualitative systematic reviewanesthesiology 2013 119 452478crossref pubmed scopus 91 google scholar7lemay hardy jf taillefer mc dupuis g patient satisfaction anaesthesia servicescan j anaesth 2001 48 153161crossref pubmed scopus 59 google scholar number satisfaction questionnaires gained popularity quality recovery score 40 qor 408myles ps weitkamp b jones k melick j hensen validity reliability postoperative quality recovery score qor40br j anaesth 2000 84 1115crossref pubmed scopus 499 google scholar looking return function surgery hospital consumer assessment healthcare providers systems hcahps9hospital consumer assessment healthcare providers systemshttpwwwhcahpsonlineorghomeaspxgoogle scholar survey used assess patient experience hospital encounters despite validated surveys published literature adoption daily practice unclear construction successful tool requires defined psychometric development process validation practice6barnett sf alagar rk grocott mp giannaris dick jr moonesinghe sr patientsatisfaction measures anesthesia qualitative systematic reviewanesthesiology 2013 119 452478crossref pubmed scopus 91 google scholar order produce questionnaire patients seems sensible involve patients step development recent white paper american society anesthesiology asa suggests following steps undertaken building patient questionnaire summarized table 110american society anesthesiologypatient satisfaction experience anaesthesia 2014httpwwwaqihqorgfiles20140609cpom20patient20satisfaction20and20experiencewhite20paperfinal20revisedpdfgoogle scholartable 1asa recommendations building patient questionnairesteps required building patient questionnairemethoditem generationgather opinions patient focus groups relevant health care professionals literature search may performed help define considered important questions may formulated separated dimensions within questionnaire modified delphi process may used help distil relevant items place dimensionsconstruct pilot questionnairethe number questions reduced predetermined number questions amended comprehensibility skew variabilitytest pilot questionnairethe pilot questionnaire tested reliability validity ease understanding clear description questionnaire used stage questions may removed prove ambiguous unnecessarya revised pilot questionnairethe revision written tested different group patients may done facetoface interviews written mail telephone electronicallyeliminate items perform poorlyreliability may measured using statistical analysis cronbachs alpha test acceptable value 07095 validity may assessed utilizing multitrait analysis acceptability may gauged looking time complete response ratesretest final questionnaireonce developed questionnaire may retested determine scores continue exhibit reliability construct validity open table new tab may seem simpler utilize questionnaires already exist validated however selecting questions statistically validated surveys guarantee production new equally valid survey equally also guarantee combining surveys yield new validated super survey constructing new survey utilizing questions themes previously validated surveys likely produce something reliable robust number proms prems questionnaires developed therefore choosing correct tool difficult target patient group content reliability validity questionnaire considered addition prior use similar patient demographic11fitzpatrick r davey c buxton mj jones dr evaluating patientbased outcome measures use clinical trialshealth technol assess 1998 2 174crossref pubmed scopus 1221 google scholar pilot questionnaire prior commencing proms prems data collection vital identify inappropriate questions population number specialties employ use proms prems evaluate patient management rheumatology paediatrics respiratory medicine cardiology12palmer miedany ye prems inflammatory arthritis guidelines standard practicebr j nurs 2014 23 982985crossref pubmed scopus 2 google scholar 13tadic v hogan sobti n knowles rl rahi js patientreported outcome measures proms paediatric ophthalmology systematic reviewbr j ophthalmol 2013 97 13691381crossref pubmed scopus 28 google scholar 14garrow ap yorke j khan n vestbo j singh tyson systematic literature review patientreported outcome measures used assessment measurement sleep disorders chronic obstructive pulmonary diseaseint j chron obstruct pulmon dis 2015 10 293307crossref pubmed scopus 20 google scholar 15lagha e noble smith denvir leslie sj patient reported experience measures prems chronic heart failurej r coll physicians edinb 2012 42 301305crossref pubmed scopus 15 google scholar validated tools available use anaesthesia systematic review patientsatisfaction measures anaesthesia barnett et al6barnett sf alagar rk grocott mp giannaris dick jr moonesinghe sr patientsatisfaction measures anesthesia qualitative systematic reviewanesthesiology 2013 119 452478crossref pubmed scopus 91 google scholar highlighted number studies continue use nonvalidated instruments potentially leading erroneous results data recent sprint national anaesthesia project snap1 may help providing validated patientreported outcome experience data anaesthesia16moonesinghe sr walker em bell snap1 investigator group design methodology snap1 sprint national anaesthesia project measure patient reported outcome anaesthesiaperioper med london 2015 17 4crossref google scholar data snap1 postoperative nausea vomiting ponv rates may allow individual trusts clinicians reflect adapt practices improve patient outcomes experience majority proms prems questionnaires given patients preoperative clinics point initial contact onsite feedback postoperative form posted individual participating data collection postcontact feedback data collected prespecified time point relation event disease studied17dawson j doll h fitzpatrick r jenkinson c carr aj routine use patient reported outcome measures healthcare settingsbmj 2010 340 c186crossref pubmed scopus 423 google scholar optimal timing complete questionnaire vary disease procedure target data independent patient perceptions health status care therefore questionnaires completed away health care professionals aided friend relative required proms prems distributed via email telephone calls recently text messages giving instant feedback patient care online surveys facetoface interviews also used collect data 2009 uk department health launched mandatory initiative measure improve clinical quality collecting 5 reporting proms four key surgical interventions unilateral total hip knee replacements groin hernia repair vari cose vein surgeries18health social care information centremonthly patient reported outcomes proms englandhttpwwwhscicgovukmedia1537aguidetopromsmethodologypdfpromsguidev8pdfgoogle scholar 2011 government white paper equity excellence liberating nhs highlighted would support clinicians use proms across nhs recognizing patients perception health experiences key providing excellent patientcentred clinical care19equity excellence liberating nhshttpswwwgovukgovernmentpublicationsliberatingthenhswhitepapergoogle scholar summary uses proms prems data sets found table 2table 2summary uses proms prems data setshow use proms data sethow use prems data setto improve patients ability compare service providers quality careto provide feedback health care professionals quality careto determine efficacy clinical interventionsto improve effectiveness processes careto determine cost effectiveness clinical interventionsto provide data improve current quality service offer patientcentred careto identify triggers surgery potentially reduce burden clinical services limiting numbers unnecessary ineffectual proceduresto allow management insight patient expectations redesign pathways accordingly meet theseto provide clinician specific data sets performance support revalidation processto allow comparisons performance trusts thus allowing rewards positive outcomes quality careto provide data clinical audit open table new tab patients consent participate proms questionnaire obtained questionnaire given patient hospital staff preoperative visit procedure performed within 18 weeks questionnaire completion date second questionnaire offered patient preoperative questionnaires stored database contracted data suppliers responsible contracted data suppliers responsible collecting data administering postoperative questionnaires working behalf trust performing proms procedure postal postoperative questionnaires issued directly patients home address 3 hernia varicose vein surgeries 6 months hip knee replacements post procedure allow effects operation identified reminders repeat questionnaires sent patients reply period 6 months response time allowed received data supply contractors postprocedure questionnaires linked individuals preprocedure questionnaires database health social care information centre hscic body responsible collating publishing proms data updated monthly basis data supply contractors reports published hscic one year data collection period allow time questionnaires collected data sets 20112012 20122013 20132014 response rates pre postoperative proms questionnaires 7018health social care information centremonthly patient reported outcomes proms englandhttpwwwhscicgovukmedia1537aguidetopromsmethodologypdfpromsguidev8pdfgoogle scholar clearly defined minimum response rate surveys work needs undertaken area specific set questions offered patients pre postoperatively government mandated proms procedures varicose veins groin hernia hip unilateral knee replacements see table 3table 3national data set collected per proms procedureelective surgery proms proceduregeneric promscondition specific promsunilateral hip replacementseq5dtm index eqvastmoxford hip score ohsunilateral knee replacementseq5dtm index eqvastmoxford knee score oksvaricose veineq5dtm index eqvastmaberdeen varicose vein questionnaire avvqgroin herniaeq5dtm index eqvastmeqvisual analogue scale eqvas open table new tab eqvisual analogue scale eqvas patient asked complete generic set questions regarding health status eq5dtm eqvastm eq5dtm standardized measure health status consists 5stemmed descriptive system eqvastm visual analogue scale allowing patient score general health thermometer style scale eq5dtm eqvastm seen combined document fig 1 descriptive system covers mobility selfcare daily activities pain anxiety18health social care information centremonthly patient reported outcomes proms englandhttpwwwhscicgovukmedia1537aguidetopromsmethodologypdfpromsguidev8pdfgoogle scholar addition condition specific questionnaire given patient eg oxford hip score ohs aberdeen varicose vein questionnaire avvq patients perceptions outcome procedure complications encountered also questioned postoperative data collection ohs oks developed 1996 1998 respectively developed university oxford assess outcomes hip knee replacements randomized control trials validity reliability extensively tested prospective studies international use ohs oks spans application cohort studies audit use national registries widely used patientreported outcome measure orthopaedics avvq developed validated health services research unit aberdeen hospital conjunction vascular surgeons tool allows patient selfassessment varicose vein severity appears national international guidelines key casebycase evaluation limitations proms prems must considered health care organization embarking implementing tools help guide patient care correct measuring instrument data collected understanding health care providers cost key factors need evaluated choosing correct tool measure proms prems specific population data collected crucial tool must validated data collected meaning number proms particular originally developed use research methodology extrapolation clinical practice may make interpretation data inaccurate collecting data poses additional challenges considered site feedback collects data patients may physical psychological state give accurate opinions experience health status addition missing information relating discharge recovery patients may also concerned negative impact answers care given health care providers adjust responses accordingly postcontact feedback relies upon adequate sample size patients filling questionnaires potential lowresponse rates time constraints may also affect data collection process disruptions outpatient inpatient clinical encounters order distribute questionnaires20fung ch hays rd prospects challenges using patientreported outcomes clinical practicequal life res 2008 17 12971302crossref pubmed scopus 109 google scholar reduce bias completing questionnaires home patients time may beneficial patient demographics impact reliability data national proms data set collects patient identifiable information however used analysis order avoid skewed results nationally statistical analysis performed adjust variances casemix providers2monmouth partners guide patient reported measures theorylandscape useshttpwwwmonmouthpartnerscomassetspdfa20guide20to20patient20reported20measurespdfgoogle scholar translation proms prems questionnaires frequently required ensure patients within multicultural population included data collection however loss meaning questions literal translations addition cost translation results questionnaires translated patient translator relative17dawson j doll h fitzpatrick r jenkinson c carr aj routine use patient reported outcome measures healthcare settingsbmj 2010 340 c186crossref pubmed scopus 423 google scholar potential loss data certain patient populations consequence must considered interpreting results addition surveys may exclude inadequate literacy resulting selection bias identifying causal differences patient groups difficult via questionnaires questions lacking depth allow thorough understanding interpretation data collected clinicians knowledge familiarity proms prems use data important education programs may needed allow clinicians utilize instruments correctly apply data beneficially clinical practice20fung ch hays rd prospects challenges using patientreported outcomes clinical practicequal life res 2008 17 12971302crossref pubmed scopus 109 google scholar current health care resources already stretched cost new data collection must considered funding required develop tool provide training programs implementation measuring instruments well cost analysing data cost maybe limiting factor health care providers using proms prems data collected prems must interpreted conjunction data proms disparities patient experience data compared clinical effectiveness safety data occur therefore important remember patient experience indicator quality direct measure university college london hospital recently awarded grant health foundation part innovating improvement programme develop dedicated facility delivery regional anaesthesia block room part new regional anaesthesia service looked deliver anaesthesia hand surgery service using nerve blocks alone sedation patients offered use media distraction ipad music player within operating theatre alternative sedation change service assessed using patient experience questionnaire created validated within department result work indicated improved perioperative experience patients receiving chemical sedation comparison patients receive sedation improvements mainly result earlier return drinkingeating quicker time discharge patients also expressed greater feeling control result information provide regional anaesthesia hand operating lists improving patient satisfaction experience addition delivering cost effective service utilizing prems proms data way help improve current clinical services develop services benefit patients care providers proms prems useful tools increasingly used obtain data patients perceptions health experiences whilst receiving care aim improving quality care choosing correct measuring tool vital ensure validated reliable data population obtained limitations proms prems must considered prior implementing tools