Marlene H. Frost|Amy E. Bonomi|Joseph C. Cappelleri|Holger J. Schünemann|Timothy J. Moynihan|Neil K. Aaronson
Applying Quality-of-Life Data Formally and Systematically Into Clinical Practice
Mayo Clinic in Arizona|The Ohio State University|Pfizer (United States)
systematic integration qualityoflife qol assessment clinical setting although deemed important infrequently occurs barriers include need practical approach perceived useful efficient patients clinicians inability clinicians readily identify value integrating qol assessments clinical setting discuss use qol data patient care review approaches used integrate qol assessment clinical setting additionally highlight select qol measures successfully applied clinical setting measures shown identify key qol issues improve patientclinician communications improve enhance patient care however work done date requires continued development continued research needed provides information benefits addresses limitations current approaches systematic integration qualityoflife qol assessment clinical setting although deemed important infrequently occurs barriers include need practical approach perceived useful efficient patients clinicians inability clinicians readily identify value integrating qol assessments clinical setting discuss use qol data patient care review approaches used integrate qol assessment clinical setting additionally highlight select qol measures successfully applied clinical setting measures shown identify key qol issues improve patientclinician communications improve enhance patient care however work done date requires continued development continued research needed provides information benefits addresses limitations current approaches mrs james 62yearold woman 5year history renal cell carcinoma treated nephrectomy presented second opinion regarding lung nodules nodules first seen 3 months ago time observation chosen course management medical history consisted hereditary peripheral neuropathy ataxia hypothyroidism osteoarthritis hypertension examining history physician assumed quality life qol likely impaired however mrs james walked office steady gate cane hand using assumption challenged appeared well cheerful readily entered discussion findings recent scan physician discussed fact change occurred nodules located lungs concurred continue watchful waiting mrs james reported reassured information physician asked mrs james additional questions concerns would like discuss receiving answer physician systematically collected qol data composed linear analog scale assessment global qol items 10 items functional assessment cancer therapygeneral factg 33 items mrs james gave following scores linear analog scale assessment high scores favorable 9 10 overall qol mental wellbeing emotional wellbeing social activity spiritual wellbeing support friends family 8 10 fatigue however scores 4 overall physical wellbeing 2 frequency pain 3 severity pain thus mrs james fairly well exception physical wellbeing pain factg higher scores favorable mrs james scored 19 28 physical 11 24 emotional 21 28 social 24 28 functional wellbeing closer review factg questions revealed mrs james significant pain rating much significant trouble sleeping reporting slept well little bit also noted somewhat feeling losing hope fight illness somewhat worried condition would get worse point significance physician examined individual item scores functional wellbeing area assumption would mrs james well area score 24 possible 28 however scale identified difficulty sleeping example illustrates significance examining scale scores difficulties noted qol measures discussed initial assessment yet significant issues findings led physician discovery mrs james almost constantly pain neuropathies awakened night pain secondary osteoarthritis frustrated inability get around times grip jar open container make meals losing hope fight illness worried condition getting worse trouble meeting family needs concerned lack family communications acceptance illness example exemplifies importance qol data providing total picture patient case study illustrates advantages difficulties integrating qol assessment clinical setting setting clinician consulted provide second opinion regarding lung nodules identification qol issues related cancer results need referral patients primary care physician specialist pain clinic practitioners management issues oncologist still formulate treatment plan alleviate symptoms meanwhile issues losing hope worry condition getting worse lack family communication related disease progression receive attention issues addressed oncologist discussing natural history disease fact individuals may relatively indolent course excellent functional status prolonged periods carefully monitoring changes promising abandon patient belief benefits taking care physical psychosocial needs patient referral team members fields social work chaplaincy nursing andor psychology would warranted quality life important end point care patients cancer1american society clinical oncology outcomes cancer treatment technology assessment cancer treatment guidelinesj clin oncol 1996 14 671679pubmed google scholar 2tannock treating patient cancer editorialn engl j med 1987 317 15341535crossref pubmed scopus 55 google scholar however systematic integration qol assessments clinical setting lags behind importance leaves us task identifying qol data integrated formally systematically efficiently clinical practice aid patient care article focuses task addresses following topics types qol data use clinical setting communication qol data possible approaches effects integrating qol assessment care individual patient growing evidence suggests optimizing processes outcomes care depends implementing multicomponent interventions change prevailing system care3wagner eh austin bt vonkorff improving outcomes chronic illnessmanag care q spring 1996 4 1225pubmed google scholar 4wagner eh glasgow davis c et alquality improvement chronic illness care collaborative approachjt comm j qual improv 2001 27 6380pubmed scopus 566 google scholar 5bodenheimer wagner eh grumbach k improving primary care patients chronic illnessjama 2002 288 17751779crossref pubmed scopus 2163 google scholar institute medicines report6institute medicine committee quality health care america crossing quality chasm new health system 21st century national academy press washington dc2001google scholar crossing quality chasm outlines 6 fundamental components optimal care illness safe timely evidence based efficient equitable patient centered core patientcentered care concept selfmanagement patients active central role managing illness including routine selfmonitoring symptoms adverse effects medication adherence functionality qol selfmanagement important concept patient care example adverse effects symptoms must proactively managed tradeoffs routinely weighed treatment risks benefits clinicians play important role communicating reinforcing patients active central role care addition treatment management specific clinician roles include following assessing patients levels functionality skills confidence manage illness referring patients effective behavioral change programs reinforce selfmanagement activities offered psychology psychiatry education departments conditionspecific community programs collaboratively setting goals defining care plans7glasgow funnell mm bonomi ae davis c beckham v wagner eh selfmanagement aspects improving chronic illness care breakthrough series implementation diabetes heart failure teamsann behav med 2002 24 8087crossref pubmed scopus 255 google scholar role clinician also becomes one communicating qol issues patient chooses informed shared decisionmaking models assessment patient functionality qol clinical trials generated grouplevel aggregate data provide clinicians patients valuable information substantiate possible functional qol consequences various treatments information combined efficacy information promotes shared informed decision making absence qol functionality data makes difficult weigh risks benefits treatment outcomes survival example whether patients willing trade several weeks months nausea vomiting fatigue time spent away family activities receiving therapy 2 4 chance response treatment extension life recently qol instruments used clinical setting help focus patient visits key problems eg symptoms functional limitations affect qol instruments sent patients visit completed waiting room qol data reviewed clinicians summarized technician scores subsequently shared patients clinicians problem areas targeted used collaboratively set goals patients proactive administration qol questionnaires therefore become formal mechanism increasing efficiency visits working collaboratively patients identify problem areas following sections discuss use grouplevel aggregate vs individuallevel qol data aid patient decision making guide patient selfmanagement activities different mechanisms collecting individuallevel qol data clinical settings eg computer administration vs paperandpencil questionnaires evidence effects qol administration processes outcomes care provide sample qol questionnaires administered clinical setting individual patients grouplevel data available begin reviewing grouplevel data published studies compared qol one group patients another following section focus individuallevel data collected patients time visit 2 data sources address approaches communicating qol information patients grouplevel data aggregated individual patients grouplevel data derived clinical trials biggest obstacle faced using grouplevel data clinical setting interpretation specifically comparison qol scores among groups may result statistically significant differences often little guidance available whether differences clinically meaningful presenting grouplevel data individuals important emphasize patients included sample responded manner although average scores tend emphasized patients reported better worse outcomes evidenced variability individual scores illustrate use grouplevel data clinical setting use example prophylactic mastectomy women high risk breast cancer strong family history may consider undergoing prophylactic mastectomy considering procedure clinicians ascertain whether women aware efficacy data procedure also data potential qol consequences clinician might share summary results studies indicate women ranging 6 19 across studies elect prophylactic mastectomy subsequently dissatisfied8borgen pi hill ad tran kn et alpatient regrets bilateral prophylactic mastectomyann surg oncol 1998 5 603606crossref pubmed scopus 91 google scholar 9frost mh walsh vockley c suman vj greene mh zahasky k hartmann l perceived familial risk cancer health concerns psychosocial adjustmentj psychosoc oncol 2000 18 6382crossref scopus 9 google scholar however one study onethird women reported disturbed body image prophylactic mastectomy9frost mh walsh vockley c suman vj greene mh zahasky k hartmann l perceived familial risk cancer health concerns psychosocial adjustmentj psychosoc oncol 2000 18 6382crossref scopus 9 google scholar conversely 74 women reported decreased concern development cancer result procedure9frost mh walsh vockley c suman vj greene mh zahasky k hartmann l perceived familial risk cancer health concerns psychosocial adjustmentj psychosoc oncol 2000 18 6382crossref scopus 9 google scholar thus although preventive surgery likely significantly reduce concerns anxiety developing breast cancer may adverse consequences womens body image related issues information may useful helping women decide among available options second example useful grouplevel data clinical setting research addresses conservative breast surgery compared mastectomy women breast cancer great hope breast conservation would minimize psychological sexual consequences surgical treatment breast cancer however studies consistently found significant differences general psychological distress marital satisfaction sexual function reported women underwent breastconserving therapy vs opted mastectomy10fallowfield lj hall psychosocial sexual impact diagnosis treatment breast cancerbr med bull 1991 47 388399pubmed google scholar 11schover lr yetman rj tuason lj et alpartial mastectomy breast reconstruction comparison effects psychosocial adjustment body image sexualitycancer 1995 75 5464crossref pubmed scopus 243 google scholar hand breastconserving therapy may result better body image fewer difficulties clothing10fallowfield lj hall psychosocial sexual impact diagnosis treatment breast cancerbr med bull 1991 47 388399pubmed google scholar 12ganz pa schag ac lee jj polinsky ml tan sj breast conservation versus mastectomy difference psychological adjustment year surgerycancer 1992 69 17291738crossref pubmed scopus 296 google scholar interestingly perceiving oneself choice may influence outcomes greater extent type surgical procedure performed women offered choice breast conservation mastectomy experienced less depression 1 year compared women offered choice13fallowfield lj hall maguire gp baum psychological outcomes different treatment policies women early breast cancer outside clinical trialbmj 1990 301 575580crossref pubmed scopus 634 google scholar second type data collected interpreted individual level qol questionnaires completed individual patients interpreted collaboratively clinicians patients time communication individual qol results requires consideration whether singleitem multipleitem qol measure used case multiitem questionnaire scores 2 different subscales might diverse resulting low score one subscale cancels effects high score another subscale global assessments need followed either closer look subscale item score information case single item evaluation attractiveness multiitem measures dartmouth primary care cooperative information project coop charts 36item shortform health survey sf36 european organization research treatment cancer quality life questionnaire30 items eortc qlqc30 factg provide detailed information qol specific life areas ideally patients selfreported qol serve basis discussion functioning specific problem areas patients complete qol questionnaires visit various appointments could made proactively appropriate health care professionals address problem areas eg pain psychological distress patient completion qol questionnaires intervention useful providing baseline patient serves control administering qol questionnaires return visit display improvements negative effects result disease process interventions data time allowone see trajectory disease treatment impact individual however clinician examines scores important realize normal fluctuation scores general rule half sd change suggests clinically significant alteration patients qol reflect simple normal fluctuations14sloan ja vargaschanes kamath cc et aldetecting worms ducks elephants simple approach defining clinically relevant effects qualityoflife measuresj cancer integr med 2003 1 4147google scholar example 100point scale sd 10 score change 5 points would reflect clinically significant difference normative instrumentspecific estimates may used determine score range sd although concern expressed using grouplevel data determine threshold individual change argued purpose determine change vs change use score difference reflects minimal important difference determining clinical significance fairly accurate15cella bullinger scott c barofsky clinical significance consensus meeting group group vs individual approaches understanding clinical significance differences changes quality lifemayo clin proc 2002 77 384392abstract full text full text pdf pubmed scopus 138 google scholar another approach demonstrating score changed enough reflect change one anchor another eg little better somewhat better16guyatt gh osoba wu aw wyrwich kw norman gr clinical significance consensus meeting group methods explain clinical significance health status measuresmayo clin proc 2002 77 371383abstract full text full text pdf pubmed scopus 1094 google scholar informative communication approaches provide patients data likelihood single aspect qol improve treatment meaningfulness qol improvement respect patients ability function importance qol change specific person17symonds berzon r marquis p rummans ta clinical significance consensus meeting group clinical significance qualityoflife results practical considerations specific audiencesmayo clin proc 2002 77 572583abstract full text full text pdf pubmed scopus 70 google scholar information communicated number symptomfree days percentage persons experiencing improvements specified amount time required experience minimally important change18burge ps calverley pm jones pw spencer anderson ja maslen tk isolde study investigators randomised double blind placebo controlled study fluticasone propionate patients moderate severe chronic obstructive pulmonary disease isolde trialbmj 2000 320 12971303crossref pubmed scopus 1456 google scholar likelihood improvement may communicated terms percentage number persons experience benefit experience loss function deteriorated qol patients score groups average score alone provides patients limited information additionally communication relative risks found confusing avoided19frost mh schaid dj sellers ta et allongterm satisfaction psychological social function following bilateral prophylactic mastectomyjama 2000 284 319324crossref pubmed scopus 268 google scholar simple display data using line graph documents group means individual scores time similar figure 1 documented approach patients prefer text data stacked graphs sidebyside bar graphs patients also report higher level understanding line graphs compared methods presenting data20brundage feldmanstewart leis et alcommunicating quality life information cancer patients study six presentation formatsj clin oncol 2005 23 69496956crossref pubmed scopus 102 google scholar however presenting data compare groups sidebyside graphs helpful21feldmanstewart brundage md challenges designing implementing decision aidspatient educ couns 2004 54 265273abstract full text full text pdf pubmed scopus 46 google scholar instance line graphs 2 group lines would put graph comparison similarly researchers avoid complex statistical modeling impedes clinicians understanding healthrelated qol data22osoba bezjak brundage zee b tu pater j quality life committee ncic ctg analysis interpretation healthrelated qualityoflife data clinical trials basic approach national cancer institute canada clinical trials groupeur j cancer 2005 41 280287abstract full text full text pdf pubmed scopus 213 google scholar 23hanoch pachur nurses information providers facilitating understanding communication statistical informationnurs educ today 2004 24 236243abstract full text full text pdf pubmed scopus 11 google scholar frequencies23hanoch pachur nurses information providers facilitating understanding communication statistical informationnurs educ today 2004 24 236243abstract full text full text pdf pubmed scopus 11 google scholar change scores time numbers patients reporting clinically meaningful 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