Robin Lee|Miya Frick|Galen Joseph|Cláudia Guerra|Susan L. Stewart|Celia P. Kaplan|Niharika Dixit|Janice Y. Tsoh|Selena Flores|Rena J. Pasick
Research to reduce inequities in cancer risk services: Insights for remote genetic counseling in a pandemic and beyond
University of California, San Francisco|University of California, San Francisco|University of California, San Francisco|University of California, San Francisco|University of California, Davis|University of California, San Francisco|University of California, San Francisco|University of California, San Francisco|University of California, San Francisco|University of California, San Francisco
hboc genetic counseling testing largely unavailable historically underserved populations despite known high mortality rates due cancer covid19 pandemic highlighted societys longstanding health care inequities two decades evolving practicebased research hereditary cancer genetic counseling underserved populations unexpectedly prepared us respond covid pandemic provides lessons learned improve access decrease health disparities essay story collaborations cancer disparities researchers providers farreaching implications field genetic counseling genetic counseling testing hereditary breast ovarian cancer hboc use 20 years yet services largely unavailable historically underserved populations despite known high mortality rates due cancer williams et al 2019 covid19 pandemic highlighted societys longstanding health care inequities two decades evolving practicebased research hereditary cancer genetic counseling underserved populations unexpectedly prepared us respond covid pandemic provides lessons learned improve access decrease health disparities essay story collaborations cancer disparities researchers providers farreaching implications field genetic counseling 1994 brca1 brca2 identified tumor suppressor genes mutated confer exceptionally high risk breast ovarian cancer mutations rare occurring 510 individuals breast ovarian cancer king et al 2003 1996 genetic testing became clinically available families personal andor family histories suggestive hereditary breast ovarian cancer syndrome hboc enabling learn increased risk cancer individuals positive mutation choose multiple riskreducing potentially lifesaving interventions enhanced cancer screening chemoprevention risk reducing surgery including bilateral mastectomy oophorectomy domcheck et al 2010 institution university california san francisco ucsf genetic testing hboc first offered 1996 part research protocol cc 96759 ucsf 1996 obtain genetic testing participants required sign detailed consent form complete psychological questionnaires pre posttesting purpose research study implications new genetic counseling testing services including psychological impact decisionmaking medical interventions informing family positive results well concerns privacy insurability process genetic counseling testing consisted three separate inperson 60 90min visits first educational family history gathering session often including exhaustive collection medical records death certificates second testing appointment final visit included results recommendations cancer screening prevention appropriate length appointments number required visits need medical records literacy level educational tools consent forms written material created barriers initially prevented genetic counseling testing hboc becoming widely available outside research setting american society clinical oncology 1996 many dynamics compounded brca story including myriad genetics ownership patent genes overturned courts 2013 greatly increased cost testing limited availability cookdeegan et al 2010 although institution testing done research protocol research cover cost testing insurance coverage limited required patients pay pocket expensive tests early 2000s genetic counseling testing hboc became readily available many clinical oncology settings american society clinical oncology 2003 however many medical innovations patients financial resources andor access benefit underserved thus exacerbating health disparities good et al 2005 2002 generous grant avon foundation enabled cancer genetics prevention program ucsf establish satellite clinic san francisco general hospital sfgh called zuckerberg sfgh zsfg county hospital san francisco operated san francisco department public health largely staffed ucsf clinical faculty avon funding supported free genetic counseling hboc testing lowincome safety net patients knowledge first program united states offer clinical services cost learned quickly free services alone eliminate barriers risk reduction faced vulnerable populations year zsfg genetic counselors initiated ongoing collaboration experts ucsf study strategies increase awareness hboc access care multidisciplinary team formed included public health health communication researchers social scientists oncologists social workers research associates genetic counseling assistants patient navigators facilitate referrals successful collaboration public hospital patients staff unfamiliar genetic counseling spent time staff become familiar patient populations challenges faced genetic counselors attended oncology clinics tumor boards provided inservice training devised selfadministered family history questionnaire could used mammography clinic lee et al 2005 initially met measure resistance staff expressed unease genetic testing financial resources required population many faced compounding issues homelessness substance abuse chronic health conditions mental illness time medical oncologists eager specific patients tested suspecting hereditary cancer conditions might impact treatment decisions initiation clinical services setting led team several research questions addressed key barriers ineffective communication limited access genetic risk services clinical care genetic testing research initial phase generously funded avon breast cancer crusade initial work focused tools needed provide appropriate education multilingual population lower health literacy lubitz et al 2007 early research findings made clear conventional model genetic counseling would meet needs patients setting example excessive technical information provided initial genetic counseling visit many concepts translate well patients native languages medical interpreters also difficulty specific words concepts analogies joseph guerra 2015 laraotero et al 2019 gathering prior medical records also difficult particularly patients experiencing family separation due immigration complicated social situations research included patient focus groups qualitative interviews patients interpreters led us rethink informed consent procedure patient education requirements genetic testing greater sensitivity culture language health literacy key collaboration time partnership dr galen joseph medical anthropologist ucsf integral research detailed dr joseph particularly interested communication genetic counselors patients collaborated one first projects develop patient educational materials final products informed patient focus groups examined genetic education terms presentation strategies based patients stated preferences lubitz et al 2007 results led us develop cancer risk educational tool credit 15min video english spanish versions intended orient patients prior initial pretest genetic counseling visit evaluated credit using pre postquestionnaires patient interviews found genetic counseling testing breastovarian cancer new concept credits use family story explain hereditary cancer risk particularly appealing however changes participants perceived risk breast cancer varied misunderstandings individual risk heredity persisted credit counseling joseph et al 2010 given results especially persistent misunderstandings challenges implementing credit consistently busy clinic next project aimed assess strengths limitations genetic counseling communication practices latinx patients joseph et al 2015 pilot project identified strengths limitations observed communication family health history education regarding genes genetics patient information needs purpose genetic test genetic test results cancer risk building rapport providing support medical interpretation monolingual spanish speakers subsequent indepth study included diverse population english spanish chinesespeaking patients examine communication genetic counselors patients patient perspective joseph et al 2017 analysis 170 genetic counseling sessions found substantial mismatch information provided patients information patients needed wanted address finding designed intervention genetic counselors rather patients adapting evidencebased communication methods effective communication patients low health literacy limiting amount information using teachback assess comprehension schillinger et al 2003 weiss 2007 genetic counseling context joseph et al 2019 findings studies presented several national local educational events workshopped genetic counselors genetic counseling students adapted context returning exome sequencing results intervention called aria accessible relational inclusive actionable currently tested randomized controlled trial part clinical sequencing evidencegenerating research cser consortium amendola et al 2018 riddle et al 2020 even though genetic testing becoming widely available early 2000s technology improving cost testing decreasing historically underserved patients continued left behind beattie et al 2012 wang et al 2011 inequity led us extend collaboration include experienced cancer disparities researchers explore assess mechanisms extend reach genetic counseling academic medical center diverse lowincome patients throughout san francisco bay area together developed two successive national cancer institutefunded research trials statewide communication reach diverse lowincome women nci r01ca129096 200712 comparison 3 modes genetic counseling highrisk public hospital patients gc3 study nci r01ca197784 201621 direction principal investigator dr rena pasick professor medicine cancer disparities researcher ucsf goal statewide study ascertain whether existing program provides free breast cervical cancer screening lowincome communities throughout california could expanded also identify women high risk hboc connect free genetic counseling testing partnered every woman counts ewc trusted tollfree phone service california department public health called thousands diverse underserved women every year httpswwwdhcscagovservicescancerewc targeted callers within geographic reach ucsf cancer genetics program assess risk hboc callers eligible genetic counseling virtue personal family risk invited join study randomly assigned either immediately schedule genetic counseling appointment sent information risk make appointment study adapted pedigree assessment tool pat create sixpoint scale designed ease administration phone joseph et al 2012 stewart et al 2016 teller et al 2010 participation study included reimbursement travel san francisco nearby counties inperson counseling however quickly became apparent transportation travel distance barriers preventing patients completing counseling result modified study protocol include phone counseling first visit patients met criteria genetic testing encouraged present person genetic testing expected strategy enabled many highrisk women participate 14month period 23619 callers 1212 5 met initial study criteria callers 88 7 1212 identified high risk 13 15 personal history breast cancer clinic records used assess receipt genetic counseling 2month period period 17 participants 39 randomized intervention arm received genetic counseling compared 2 participants 45 control group end study period women contacted offered genetic counseling eventually 51 participants 58 received genetic counseling pasick et al 2016 concurrent statewide study sought explore deeply issues access hboc education services community experiencing highest rate mortality due breast cancer african american women funding susan g komen cure 201015 pi pasick building longstanding african american faithbased initiative ucsf comprehensive cancer center developed family history project assess feasibility training church health ministry leaders cancer family history including collection selfadministered screener forms using another adaptation sixpoint scale encouragement found high risk obtain free genetic counseling ucsf findings showed trained health ministry leaders lay low literacy adults received information needed assess family history act information risk hereditary breast ovarian cancer identified 84 women high risk 751 screener forms 50 obtained genetic counseling manuscript development statewide family history projects counseled unlikely obtain hboc genetic counseling way potential benefits improved access genetic counseling remote channels led recently completed gc3 study phone counseling greatly increased access statewide study knew little effectiveness communication channel particularly women low health literacy result designed gc3 compare three modes counseling delivery telephone video conferencing gold standard person prior research compared gc person telephone counseling found difference impact however studies included predominantly insured white patients study recruitment suffered due potential participants refused randomization kinney et al 2014 schwartz et al 2014 comparing modes wanted learn gained lost designed mixedmethod partially randomized preference noninferiority trial recruited ethnically diverse highrisk patients three public hospitals san francisco bay area patients eligible high risk hboc received genetic counseling previously spoke english spanish cantonese mandarin identify potentially highrisk patients sixpoint scale described distributed throughout multiple clinics two hospitals third hospital mammography registry form used highrisk patients also identified direct referral providers research staff obtained completed forms clinic personnel identified forms indicating high risk placed recruitment telephone calls patients informed consent obtained patients agreed participate followed administration baseline survey patients asked would agree randomized let computer choose telephone inperson video counseling appointments local clinic able request specific mode 100 patients could enrolled per counseling mode preference needed total 270 randomized participants complete study 90 per counseling mode yield statistical power required main outcome comparisons counseling appointments made patients upon assignment counseling mode completed counseling participants called complete followup survey outcomes measured baseline followup included knowledge cancerspecific distress decisional conflict risk perception followup satisfaction counseling subset patients interviewed indepth followup survey quantitative data randomized trial showed telephone video counseling effective inperson genetic counseling outcomes measured pre postcounseling improved significantly baseline followup surveys however knowledge increases lower less high school education final detailed report currently development counseling attendance varied assigned mode many telephone counseling appointments completed compared person video respondents overwhelmingly rated every mode convenient satisfaction counseling high ability receive genetic counseling remotely telephone video provided important access care well received patients video counseling provided many similarities inperson sessions including formation meaningful connections opportunity see visual aids used counselor however preliminary analyses case studies revealed nuanced limitations patient counselor perspectives particularly regarding telephone counseling including abbreviated sessions distractions less effective communication overall modes key messages often recalled patients important note patients eligible testing less likely complete test counseled telephone physically clinic provide sample likely would also case videocounseled patients order ensure uniform access video patients mode received appointments local medical clinic research assistant met set video visit genetic counselor ucsf clinic facilitated visit consent form sample collection appropriate thus test video counseling communication medium rather assessment home video conferencing video counseling combine best features inperson telephone counseling allowing greater access without losing quality satisfaction inperson appointments however immediate access testing may lost anticipated addressed process due pandemic health care systems transitioned telehealth initial effort showed even inequities access care persisted chunara et al 2021 march 17 2020 san francisco bay area instituted stayathome order covid19 pandemic overnight clinic like many others forced scale use video appointments primary clinic ucsf offering video visits time essential infrastructure largely place underresourced patients allowed us put immediate practice lessons learned gc3 study gc3 study demonstrated video visits many benefits inperson visits sought schedule remote visits video video genetic counseling gc3 study conducted hospital hospital allow us study patients would able access counseling via video homes stayathome order place covid19 restrictions opportunity learn video visits would work pandemic conditions time patients schedule visits genetic counseling assistant helps remotely download video program practices using program needed patients continue assisted video technology needed however noticed higher comfort level video technology general pandemic continued particularly since many people use video technology stay touch family friends advantage mode counseling ability use video medical interpreters limited englishspeaking patients actively train genetic counseling students simultaneously real time seeing patients home environment also gives us window daily lives living situations although patients successful using video common barriers using video include access device device used others household children attending school remotely technical difficulties patients access telephone counseling actively working put practice learned limitations telephone visits gc3 study modifications include scheduling longer visits increasing appointments 30 60 min using counseling techniques attend psychosocial needs patients using tools teachback ascertain patients understandings provide opportunity clarify information encounter problem completion testing home video visits similarly telephone counseling experienced gc3 many patients agree testing still return test kit instead extensive followup required obtain samples many cases sample never received continue seek solutions ongoing problem even pandemic behind us benefits research realtime pandemic practice continue inform efforts increase access cancer risk services patients remain underserved current health care system past 18 years cancer genetics prevention program continued evolve result research collaborations view patients individuals living within cultural socioeconomic familial contexts understand importance access services terms availability content integrating learned research clinical care vital practice genetic counseling also training new generations genetic counselors field make meaningful progress toward equitable access highquality genetic counseling services need training students medical professions proficiently provide telemedicine going critically important pourmand et al 20202021 devastation covid19 beyond comprehension also provided fuller realization deep inequalities health care tragic pandemic created opportunities deeper discussions critical review practices models counseling us population becomes increasingly diverse critically important continue research best provide genetic counseling might benefit authors lee joseph pasick confirm full access data study take responsibility integrity data accuracy data analysis authors gave final approval version published agree accountable aspects work ensuring questions related accuracy integrity part work appropriately investigated resolved grateful patients collaborates contributed work last 18 years work made possible following funders avon breast cancer crusade gc3 study nci r01ca197784 201621 statewide study nci r01ca129096 200712 susan g komen cure 201015 pi pasick susan g komen cure 20122016 pi joseph cser charm study nhgri u01hg007292 mpis wilfond goddard authors conflict interest declare animal studies carried authors article studies discussed manuscript received irb review participating institutions informed consent obtained study participants data sharing applicable article new data created analyzed study