Louisa G. Gordon|Stephanie M. Walker|Merehau Cindy Mervin|Anthony Lowe|David P. Smith|Robert A. Gardiner|Suzanne Chambers
Financial toxicity: a potential side effect of prostate cancer treatment among Australian men
Griffith University|Griffith University|Griffith University|Griffith University|Prostate Cancer Foundation of Australia|Cancer Council New South Wales|Royal Brisbane and Women's Hospital|University of Queensland|Prostate Cancer Foundation of Australia|University of Queensland|Griffith University|Cancer Council Queensland
european journal cancer carevolume 26 issue 1 e12392 original articleopen access financial toxicity potential side effect prostate cancer treatment among australian men lg gordon bec mph phd corresponding author lg gordon bec mph phd senior research fellow louisagordongriffitheduau centre applied health economics menzies health institute queensland griffith university logan city qld australiacorrespondence address louisa gordon centre applied health economics griffith health institute griffith university meadowbrook qld 4131 brisbane australia email louisagordongriffitheduausearch papers authorsm walker bec mhealthecon sm walker bec mhealthecon senior research assistant centre applied health economics griffith university logan city qld australiasearch papers authormc mervin bcombecon meconstud phd mc mervin bcombecon meconstud phd research fellow centre applied health economics menzies health institute queensland griffith university logan city qld australiasearch papers authora lowe ba mmath phd lowe ba mmath phd chief executive officer prostate cancer foundation australia sydney nsw australia menzies health institute queensland griffith university gold coast southport qld australiasearch papers authordp smith ba mph phd dp smith ba mph phd research fellow cancer council new south wales sydney nsw australiasearch papers authorra gardiner md fracs ra gardiner md fracs professor consultant urologist school medicine university queensland brisbane qld australia centre clinical research university queensland brisbane qld australia royal brisbane womens hospital brisbane qld australiasearch papers authorsk chambers rn ba bbehsci hons phd sk chambers rn ba bbehsci hons phd menzies foundation professor prostate cancer foundation australia sydney nsw australia school medicine university queensland brisbane qld australia school allied health menzies health institute queensland griffith university gold coast southport qld australia cancer council queensland spring hill qld australiasearch papers author lg gordon bec mph phd corresponding author lg gordon bec mph phd senior research fellow louisagordongriffitheduau centre applied health economics menzies health institute queensland griffith university logan city qld australiacorrespondence address louisa gordon centre applied health economics griffith health institute griffith university meadowbrook qld 4131 brisbane australia email louisagordongriffitheduausearch papers authorsm walker bec mhealthecon sm walker bec mhealthecon senior research assistant centre applied health economics griffith university logan city qld australiasearch papers authormc mervin bcombecon meconstud phd mc mervin bcombecon meconstud phd research fellow centre applied health economics menzies health institute queensland griffith university logan city qld australiasearch papers authora lowe ba mmath phd lowe ba mmath phd chief executive officer prostate cancer foundation australia sydney nsw australia menzies health institute queensland griffith university gold coast southport qld australiasearch papers authordp smith ba mph phd dp smith ba mph phd research fellow cancer council new south wales sydney nsw australiasearch papers authorra gardiner md fracs ra gardiner md fracs professor consultant urologist school medicine university queensland brisbane qld australia centre clinical research university queensland brisbane qld australia royal brisbane womens hospital brisbane qld australiasearch papers authorsk chambers rn ba bbehsci hons phd sk chambers rn ba bbehsci hons phd menzies foundation professor prostate cancer foundation australia sydney nsw australia school medicine university queensland brisbane qld australia school allied health menzies health institute queensland griffith university gold coast southport qld australia cancer council queensland spring hill qld australiasearch papers author first published 01 october 2015 httpsdoiorg101111ecc12392citations 55aboutsectionspdf toolsrequest permissionexport citationadd favoritestrack citation shareshare give accessshare full text accessshare fulltext accessplease review terms conditions use check box share fulltext version articlei read accept wiley online library terms conditions useshareable linkuse link share fulltext version article friends colleagues learn morecopy url share linkshare onfacebooktwitterlinkedinredditwechat abstract purpose study understand extent nature variability current economic burden prostate cancer among australian men online crosssectional survey developed combined preexisting economic measures new questions exceptions online survey viable acceptable participants main outcomes selfreported outofpocket costs prostate cancer diagnosis treatment changes employment status household finances men recruited prostate cancer support groups throughout australia descriptive statistical analyses undertaken total 289 men responded survey april june 2013 study found men recently diagnosed within 16 months survey n 65 reported spending median au8000 interquartile range au14 000 cancer treatment 75 men spent au17 000 2012 twenty per cent men found cost treating prostate cancer caused great deal distress findings suggest large variability medical costs prostate cancer treatment 5 men spending 250 less outofpocket expenses men facing high costs average respondents paid employment diagnosis stated retired 45 years earlier planned introduction experience prostate cancer significant personal worklife financial impact men families despite prolific body evidence prostate cancer diagnoses treatments little research exists economic burden faced directly affected prostate cancer two us studies showed majority expenses occurred first 6 months treatment jayadevappa et al 2010 men felt reasonably comfortable paying us5000 medical payments jayadevappa et al 2010 markman luce 2010 economic burden covers outofpocket medical nonmedical expenses receiving medical care impact individuals employment situation caregivers employment cancer treatments prolonged fragmented across health services unexpected medical related expenses rapidly accrue understanding impacts important educate patients treatments support individual health care choices help plan implement social support services enable equitable sustainable health policy however australia research outofpocket expenses challenging patterns care resource information routinely collected centralised linked way furthermore 47 australians optional private health insurance addition covered national health care insurance medicare patient outofpocket costs net coverage despite open recall bias patient selfreport practical method collecting outofpocket expenses selfreported data previously occurred traditional postal telephone surveys development online survey tools offers new opportunities report feasibility methods descriptive results online crosssectional survey economic burden experienced men diagnosis prostate cancer methods survey development number relevant studies related topic identified krahn et al 1999 2009 wilson et al 2006 yabroff et al 2007 warren et al 2008 fourcade et al 2009 roehrborn et al 2009 crawford et al 2010 jayadevappa et al 2010 markman luce 2010 skolarus et al 2010 stokes et al 2010 2011 andersson et al 2011 mollinier et al 2011 helped structure survey identify types sources expenses incurred provided guidance types phrasing questions survey survey intended combine health situation respondents key economic issues specific australian men diagnosed prostate cancer end survey comprised 68 questions seven domains including medical history employment household finances outofpocket expenses prostate cancer private health insurance status quality life general sociodemographic variables questions outofpocket expenses participants asked much spent already covered medicare one private health insurer copy survey provided file s1 content informed questions used previous social surveys developed adapted researchers table 1 final openended question inviting respondents provide information experience andor feedback survey included draft survey circulated consumers prostate cancer foundation australia pcfa executives modifications made structure wording final survey pretested online 15 pcfa members men prostate cancer researchers table 1 survey content sources section question content source questions medical history diagnosis date treatments whether cancer spread last psa test details concurrent health conditions researchers questions used cancer surveys gordon et al 2009 2011 tailored prostate cancer employment work status hours work leave taken job performance major changes work retirement choices questions used previous abs surveys hilda surveys researchers owndeveloped questions household finances income benefits cost impact family distress cost influence treatment choice financial hardship indicators strategies raise extra funds abs social surveys questions used markman luce 2010 cost prostate cancer costs last 3 months itemised costs total costs since diagnosis complications associated costs pbs medicare safety net caps eligibility adapted previous research jung et al 2012 researchers owndeveloped questions health insurance current status policy duration treatment coverage type hospital treated waiting time researchers owndeveloped questions quality life five questions mobility selfcare usual activities paindiscomfort anxietydepression 1 ranking question 01 overall wellbeing euroqol5d3l viney et al 2011 scored using australian weights general characteristics age ethnicity rurality language marital status education standard sociodemographic questions freetext box one openended question comments participants wished make financial impact prostate cancer researchers owndeveloped question abs australian bureau statistics caps continence aids payment scheme hilda household income labour dynamics australia pbs pharmaceutical benefits scheme psa prostatespecific antigen sampling recruitment undertook national online survey men selfreported previously diagnosed prostate cancer sample size calculations indicated 300 respondents required detect large effect size 035 mean costs equal subgroups alpha 005 two tails 80 power eligible participants approached via pcfa associated support groups pcfa hosting web link survey well inviting pcfa support group members email social media complete survey membership pcfa support groups 2013 included approximately 5000 active members capture broad crosssection cancer survivors restrictions made time since diagnosis therefore men could time since diagnosis participants anonymous researchers pcfa staff names identifying information collected survey period open responses received happened 6 weeks two reminders ethical clearance obtained griffith university human research ethics committee med3112hrec data collection analysis data collected online using limesurvey hosted survey research centre griffith university online survey opened 8 april 2013 ran 6 weeks 16 may 2013 point two reminder emails responses received participant consent via frontscreen informationconsent sheet required proceed survey survey results exported limesurvey analysed stata se11 duplicate surveys manually identified removed subgroup analyses undertaken men diagnosed prior january 2012 16 months prior survey date since january 2012 hereafter termed recently diagnosed men without private health insurance state residence pearsons chisquared students ttests p 005 used test significant differences participant characteristics among subgroups skewness considered cost data nonparametric bootstrapped statistics using 1000 repetitions biascorrected approach applied outofpocket mean costs subgroups results responses missing data total 297 survey responses received note distribution method included web link survey possible determine exact number men aware survey hence calculate response rate respondent selfreported diagnosis dates ranged october 1991 april 2013 survey completed participants fully completed survey eight responses identified duplicates subsequently removed analysis overall 289 individual survey participants comprising 239 83 full 50 17 partial responses significant differences baseline characteristics found full partial responders except higher proportion partial respondents 68 diagnosed 3 years prior survey compared full responders 51 p 0033 feasibility survey online survey acceptable respondents replied respect content format duration exceptions related technical issues less 10 men computer freezes crashes issues hampering respondent progressing survey related mandatory responses cases low computer literacy five paper surveys requested posted one support group leader replypaid envelopes none returned participants telephoned researchers clarify questions obtain technical support one case provide detailed itemised records expenses 18month period respondent characteristics mean age respondents 65 years old majority married partnered owned home living metropolitan area table 2 thirtynine per cent men aged younger 65 years men comorbid conditions eg high blood pressure 39 high cholesterol 30 arthritis 20 depressionanxiety 17 high proportion men university trade qualified 38 household incomes au37 000 au80 000 total 71 held private health insurance mean time current insurer 224 years one quarter n 65 recently diagnosed within 16 months prior survey date 65 diagnosed last 5 years median 39 years majority undergone radical prostatectomy 69 primary treatment cancer many currently receiving adt 40 less one fifth indicated cancer metastasised table 2 sociodemographic clinical profile respondents participants n 289 diagnosed january 2012b n 65 diagnosed january 2012 n 224 age group mean years sda 651 84 595 75 669 79 60 yearsa 64 22 30 46 34 15 6070 yearsa 110 38 21 33 89 40 70 yearsa 69 37 5 8 64 28 stated 46 16 9 14 37 17 total 289 100 65 100 224 100 marital statusc n married de facto 220 90 50 89 170 90 divorced 13 5 2 4 11 6 singlenever marriedwidowed 11 4 4 7 7 4 educationc primary school grade 7 4 2 0 0 4 2 high school grade 8 46 19 10 18 36 19 dipcertificatetrade qualified 86 35 15 27 71 38 university degree 108 44 31 55 77 41 household incomec 18 000 13 5 3 5 10 5 18 20137 000 48 18 7 12 41 20 37 00180 000 100 38 20 33 80 39 80 000180 000 66 25 20 33 46 22 180 000 23 9 4 7 10 5 unanswered 17 6 7 12 19 9 private health insurance yes 206 71 47 72 159 71 regionc metropolitan 177 61 41 63 136 61 regional 40 14 9 14 31 14 remote 13 4 2 3 11 5 unclear locality 14 4 4 6 10 5 statec new south wales 87 30 16 25 71 32 queensland 42 15 13 20 29 13 victoria 41 14 10 15 31 14 south australia 18 6 4 6 14 6 western australia 13 5 1 2 12 5 act 16 6 6 9 10 5 tasmania 8 3 1 2 7 3 northern territory 5 2 1 2 4 2 unknown 59 26 13 20 46 16 recent psa scored ngml mean sd metastasised n 48 1010 196 metastasis n 207 15 50 unknown spread disease n 8 35 69 diagnosed last 3 years 132 46 65 100 67 30 diagnosed last 5 years 189 65 65 100 124 55 prostate cancer metastasisedd 53 18 11 17 42 19 comorbidities cancer 28 10 3 5 25 11 heart disease 24 8 2 3 22 10 osteoporosis 22 8 2 3 20 9 stroke 5 2 0 0 5 2 diabetesa 23 8 1 2 22 10 arthritis 59 20 9 14 50 22 high blood pressure 112 39 20 31 92 41 high cholesterol 88 30 20 31 68 30 chronic lung disease 7 2 1 2 6 3 depressionanxiety 49 17 10 15 39 17 comorbidities 34 12 8 12 26 12 comorbidities per person n meana 207 22 41 19 166 23 treatment completed currente watchful waiting 26 9 3 5 23 10 active surveillance 38 13 10 15 28 13 radical prostatectomy 199 69 43 66 156 70 cytotoxic chemotherapy 9 3 1 2 8 4 radiotherapya 89 31 13 20 76 34 brachytherapy 18 6 2 3 16 7 androgen deprivation therapy 81 28 15 23 66 29 immunotherapy 1 1 0 0 1 1 22 8 5 8 17 8 values expressed n p 005 b diagnosed last 16 months prior survey january 2012april 2013 c data missing sociodemographic clinical characteristics 45 16 men including 9 14 recently diagnosed question whether doctor told respondent cancer spread parts body assume mean metastases e includes treatment therefore total n equal 289 outofpocket costs men recently diagnosed reported mean outofpocket expenditure 2012 au11 077 sd 10 096 median au8000 interquartile range au14 000 table 3 three quarters respondents diagnosed since january 2012 reported spent au17 000 overall expenditure largely specialist fees hospital services medical equipment supplies medicines mean total outofpocket expenditure reported diagnosis survey date respondents au9205 sd au14 567 median 5000 interquartile range au10 000 three quarters respondents spent au12 000 respondents private health insurance reported double outofpocket costs au10 052 95 ci au7849au12 255 without insurance au5103 95 ci au2458au7747 regardless time since diagnosis reported outofpocket costs highly rightskewed 5 men high medical expenses au30 000 end scale 5 men spent 250 less outofpocket prostate cancer treatments men radical prostatectomy also tended higher costs managed active surveillance watchful waiting androgen deprivation therapy table 3 reported expenses also tended higher among men recently diagnosed median 8000 compared men diagnosed within last 3 years median 5500 found statistically significant difference reported cost unadjusted states residence highest median cost queensland au6500 lowest south australia au875 table 3 outofpocket costs subgroups patients australian dollars n mean sd median iqr bootstrapped 95 cia total expenses since diagnosis patients 245 9205 14 567 5000 10 000 735011 059 diagnosed since january 2012bc 56 11 077 10 096 8000 14 000 839513 759 diagnosed previous 3 years 116 8923 8750 5500 11 650 732210 534 diagnosed previous 5 years 161 8937 10 442 5000 11 500 740110 473 treatment watchful waiting 24 5492 5119 3000 8750 34507534 treatment active surveillance 31 10 302 12 982 5000 8000 589214 711 treatment radical prostatectomy 171 10 996 16 681 6000 11 000 849313 500 treatment androgen deprivation therapy 67 11 471 24 119 3375 10 300 576517 177 private health insurance 196 10 052 15 460 6000 9000 784912 255 private health insurance 36 5103 8022 2000 4000 24587747 state nsw 80 10 165 12 038 5750 10 715 753912 792 state queensland 40 14 035 27 290 6500 12 385 570822 363 state victoria 39 5451 5095 5000 6900 39446959 state south australia 18 3458 7088 875 2100 3236592 advanced prostate cancer 43 12 328 15 977 5000 10 000 749817 159 nonparametric bootstrapping 1000 repetitions biascorrected approach 95 confidence interval around mean b diagnosed last 16 months survey january 2012april 2013 c aud 2012 subgroups dollars unadjusted inflation information years costs incurred employment impact total 107 39 participants reported workforce time survey approximately one quarter men stated chose earlier retirement age stopped work result diagnosis table 4 average respondents retired early retired 45 years earlier planned also reduction employment among respondents diagnosed 16 months prior survey 17 reducing work hours 17 stopping work also recently diagnosed reported longer usual work hours missed work illness compared respondents workplace respondents indicated treated respect support diagnosed prostate cancer instances respondents indicated passed promotion six men 2 told employer cancer five men 2 made redundant nine men 3 table 4 employment status impact prostate cancer participants n 289 diagnosed january 2012b n 65 diagnosed january 2012 n 224 current work statusa retired 152 55 21 33 131 61 employed 107 38 36 50 71 33 unemployedother 19 7 6 20 13 6 missing 11 2 9 work status prior diagnosis retired 71 26 13 21 58 27 employed 196 71 47 75 149 70 unemployedother 10 4 3 5 7 3 missing 12 2 10 impact retirement age diagnosis affect retirement age retired expected expect retire planned 196 71 42 67 154 72 yes cancer meant chose later retirement age 16 6 5 8 11 5 yes cancer meant chose earlier retirement age 64 23 16 25 48 23 missing 13 2 11 change work since diagnosiscd decreased work hours 41 14 11 17 30 13 increased work hours 10 3 3 5 7 3 change income 40 14 8 12 32 14 change roleresponsibilities 28 10 5 8 23 10 change employer 17 6 2 3 15 7 stopped worka 77 27 11 17 66 29 change work 138 48 34 52 104 46 work environment experiencec colleagues treated differentlya 20 7 10 15 10 5 passed promotion 6 2 2 3 4 2 demoted 1 0 0 0 1 1 made redundant 9 3 4 6 5 2 treated respect support 109 38 30 46 79 35 reveal prostate cancer work 5 2 1 2 4 2 work impact 36 12 8 12 28 12 applicable ie working 125 43 23 35 102 40 values expressed n p 005 b diagnosed within 16 months prior survey january 2012april 2013 c mutually exclusive categories question phrased since diagnosis prostate cancer therefore possible changes may due prostate cancer financial impact assessing participants recently diagnosed 57 respondents indicated financial position reasonably comfortable however six men 9 stated decided treatment due high expense even 70 spent cancer treatment expected 20 said cost treating prostate cancer caused great deal distress onethird participants 34 reported getting struggling financially pay treatment respondents reported drawn savings 38 sold assets 8 increased credit card limit 22 reporting unfavourable financial impacts prostate cancer treatment appeared worse men recently diagnosed compared responses respondents total 206 71 private health insurance men treated private hospital 171 83 remainder treated public sector 35 17 general comments received respondents add insight survey results provide useful supplementary data understanding respondents experience financial impact prostate cancer file s2 discussion study found 50 men diagnosed 2012 reported outofpocket expenses au8000 prostate cancer treatment 75 men spent au17 000 2012 despite caution required interpreting findings select group men prostate cancer suggest large variability outofpocket medical costs prostate cancer treatment men facing high costs notably many study participants welleducated financially comfortable twothirds privately insured provide adequate protection costs related unexpected common disease known patterns treatment vary public private systems states evans et al 2013 many experts also believe consumerism impact treatment choices prostate cancer turn impacted costs alkhateeb lawrentschuk 2011 seems likely factors contribute least degree variability costs study financial considerations health care naturally secondary importance person told cancer needs treatment findings highlight additional source distress vulnerable time individual