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60%$
40%$
35%$
29%$
24%$
23%$
1$
2$
3$
4$
5$
6$ n$=$638$
n$=$1,954$
n$=$1,526$
n$=$630$
n$=$286$
n$=$100$
Figure$6.$$Emo9onal$impact$of$
diabetes$s9gma:$by$diabetes$type$
and$therapy.$$Percentage)of)adult)respondents)strongly)agreeing*)that)they)have)experienced)ONE)of)the)following:))guilt,)shame,)embarrassment,)isola?on)or)blame)by)diabetes)type)and)therapy))
Inves?ga?on)of)the)Presence)and)Impact)of)Social)S?gma)on)Pa?ents)with)Diabetes)in)the)USA)Alexandra)E.)Folias1,)Adam)S.)Brown2,)Jasmine)Carvalho1,)Vincent)Wu1,)Kelly)L.)Close2)and)Richard)Wood1)1dQ&A)Market)Research)Inc.,)San)Francisco,)CA;)2diaTribe,)San)Francisco,)CA))
Introduc9on$Social)s?gma)is)described)as)a)set)of)nega?ve)beliefs,)or)a)mark)of)disapproval,)that)society)has)about)a)person)or)group)with)a)par?cular)characteris?c)(e.g.,)a)health)condi?on).)Society’s)percep?on)of)a)health)condi?on)may)oZen)lead)to)a)par?cular)s?gma,)and)how)pa?ents)feel)socially)about)their)disease)can)have)a)significant)impact)on)treatment.))Our$study’s$goals$were$to$determine$whether$pa9ents$felt$a$social$
s9gma$was$aJached$to$diabetes,$and$to$explore$the$impact$of$percep9ons$of$
diabetes$on$members$of$the$dQ&A$Panel$(n=5,410)$of$Type$I$diabetes$(T1D)$and$Type$
2$diabetes$(T2D)$pa9ents$in$the$USA.$Our)data)demonstrate)that)both)T1D)and)T2D)pa?ents)believe)diabetes)is)accompanied)by)social)s?gma)—)a)feeling)that)increases)with)intensity)of)disease)and)disease)treatment)—)and)this)s?gma)ul?mately)influences)the)disease)management)and)social)interac?ons)of)individual)pa?ents.))
Figure$1.$$Characteris9cs$of$the$dQ&A$USA$Pa9ent$Panel$(typical$survey$response).$
Respondents$
5,422$
Type$2$
3,875$(71%)$
Type$1$
1,547$(29%)$
Type$1$Kids$
199$(13%)$
Type$1$Adults$
1,346$(87%)$Type$2$Insulin$
1,737$(45%)$
Type$2$Non\insulin$
$2,138$(55%)$
Pump$users$
1,301$(24%)$
CGM$users$
732$(14%)$
MDI$No$Pump$
667$(12%)$
BG$test$>3x/day$
2,908$(54%)$
T2$on$GLP\1$
413$(11%)$
West$
1,138$(21%)$
Northeast$
1,079$(20%)$
South$
1,774$(33%)$
Midwest$
1,346$(25%)$
Type$1$A1c$≤$7%$
712$(49%)$
Type$2$A1c$≤$7%$$
2,110$(61%)$
Type$1$A1c$>$7%$
744$(51%)$Type$2$A1c$>$7%$$
1,342$(39%)$
Does$diabetes$come$with$social$s9gma?$$Who$feels$it?$
No$
24%$Yes$
76%$
Yes$
52%$
No$
48%$
T1K$83%$
T1A$74%$
$$T2I$$$55%$
T2NI$$49%$
T1D$ T2D$
74%$
56%$
81%$
52%$
74%$
50%$
76%$
54%$
77%$
52%$
81%$
53%$
75%$
51%$
77%$
61%$
T1$ T2$
<$15k$ $15k\$24k$ $25k\$49k$ $50k\$74k$
$75k\$99k$ $100k\$149k$ $150k\$199k$ ≥$200k$
Figure$3.$$Diabetes$s9gma$presence$by$demographic$group.$$Percentage)of)T1)(n=1,178))and)T2)(n=3,060))respondents)who)feel)diabetes)comes)with)a)social)s?gma)did)not)vary)significantly*)by)annual)household)income$(below))or)by)region,$educa9on,$or$dura9on$of$diabetes.)(*sta?s?cal)significance)tested)at)the)90%)confidence)level))
A$$By$A1c$Levels$(adult$T1$and$T2$insulin$users)$
Figure$7.$$Diabetes$s9gma$presence:$by$A1c,$BMI$and$diabetes$control.$$
Percentage)of)adult)respondents)strongly)agreeing*)that)they)have)experienced)guilt,)embarrassment,)shame,)blame)OR)isola?on)by)A1c)levels)(A),)BMI)(B),$and)selffreported)diabetes)control)(C).$$
B$$By$BMI$(T1$and$T2$adults)$
29%$
18%$
20%$
16%$n$=$735$
n$=$1,314$
30$\$35$
>$35$
<25$
25$\$30$
n$=$1,604$
n$=$1,280$
%$experiencing$$guilt,$embarrassment,$shame,$blame$or$isola9on$
Figure$2.$$Diabetes$s9gma$presence$in$the$USA.$$Percentage)of)respondents)who)believe)diabetes)comes)with)social)s?gma.)Three)quarters)of)T1D)respondents)(including)parents)of)children)with)T1D)(T1K)n)=199))and)adults)with)T1D)(T1A)n)=)1,344)))and)more)than)half)of)T2D)respondents)(on)insulin)(T2I)n)=)1,735),)not)on)insulin)(T2NI)n)=)2,130),)and)T2D)on)a)pump)or)mul?ple)daily)insulin)injec?ons)(MDI))(n=550)))felt)there)was)a)diabetes)s?gma)presence)in)the)USA.)
Yes$
61%$
No$
39%$
What$forms$of$s9gma$do$people$with$diabetes$face?$$$
72%$
65%$
52%$
Percep9on$of$failure$of$personal$
responsibility$
Percep9on$of$being$a$burden$on$
the$healthcare$system$
Percep9on$of$having$a$character$
flaw$or$fault$
Figure$4.$$Types$of$diabetes$s9gma.$$Share)of)respondents)who)believe)people)with)diabetes)face)the)following)forms)of)s?gma)(Base:)respondents)who)believe)that)diabetes)comes)with)social)s?gma)n=3,154).))
T2D$$
(MDI$or$pump)$
How$are$the$lives$of$those$with$diabetes$affected$by$other$people’s$
percep9ons$of$diabetes?$$$
Figure$5.$$Diabetes$management$and$social$impact$of$percep9ons$of$diabetes.$
Percentage)of)respondents)who)strongly)agree*)that)“other)people’s)percep?on)of)diabetes)have)made)it)more)difficult)for)me)to)…”)))
What$feelings$have$people$with$diabetes$experienced?$$$
43%$
37%$
31%$
25%$
26%$
n$=$460$
n$=$408$$7$\$8$
8$\$9$
≤$6$
6$\$7$
n$=$120$$
n$=$167$$
%$experiencing$$guilt,$embarrassment,$shame,$blame$or$isola9on$
>$9$
n$=$141$
C$$$By$self\reported$diabetes$control$(T1$and$T2$adults)$
%$experiencing$$guilt,$embarrassment,$shame,$blame$or$isola9on$
“Well$controlled”$
58%$
76%$
53%$T1A$$$$
T2I$$$
T2NI$$$ n$=$2,136$
n$=$1,731$
n$=$1,343$
Any$of$the$following:$
“manage$my$diabetes$successfully”$$
“take$my$medica9ons$at$the$right$9me”$$
“make$good$food$choices”$
37%$
42%$
27%$T1A$$$$
T2I$$$
T2NI$$$ n$=$2,136$
n$=$1,731$
n$=$1,343$
“Not$very$well$controlled”$
*)scoring)9)or)10)on)a)10)point)scale))
*)scoring)9)or)10)on)a)10)point)scale))
*)scoring)9)or)10)on)a)10)point)scale))
Any$of$the$following:$
“be$open$about$diabetes$with$friends/family”$
“find$a$community$to$help$manage$my$diabetes”$
“make$friends$and$enjoy$full$social$life”$
“succeed$at$work”$
$“find$support$or$share$ideas$about$diabetes”$
39%$
38%$
35%$
30%$
21%$
20%$
T2I$$$
T2NI$$$
n$=$198$
n$=$544$
T1K$$$
T1A$$$
T2$MDI/pump$$$
T2$orals$only$
n$=$1,334$
n$=$1,721$
n$=$2,112$
n$=$1,801$
Conclusions$The)answer)to)whether)diabetes$comes$with$social$s9gma$in$the$USA)was)a)resounding)‘yes’)among)pa?ents)who)are)T1D)(76%),)T2D)on)MDI/pump)therapy)(61%),)and)T2D)who)are)not)on)insulin)(49%).)Addi?onally,)respondents)felt)other)people’s)percep?ons)of)diabetes)have)had)a)nega?ve)impact)on)their)diabetes)management)(27%)of)T1A,)42%)of)T2I,)and)37%)of)T2NI))and)more)notably,)in)their)social)lives)(53%)of)T1A,)76%)of)T2I,)and)58%)of)T2NI).)How)diabetes)s?gma)is)experienced)did$not$vary$by$demographics$or$dura9on$of$
diabetes,$but)increased)with)intensity)of)disease)type)and)therapy.)We)found)that)one)third)of)T1)(38f39%))and)T2)on)MDI/pump)(35%))were)more$likely$to$
experience)guilt,$embarrassment,$shame,$isola9on,$or$blame,)while)this)result)was)lower)in)respondents)on)less$intense$therapies$(30%)in)nonfMDI)T2)insulin)users,)21%)in)T2)on)orals)only,)and)20%)in)T2NI).)The)feeling)of)s?gma?za?on)also)increased)with)poorer$glucose$control$(39%)for)A1c>8%),)higher$BMI$(29%)for)BMI)>35))and)lower)selffreported)diabetes$control.)Collec?vely)these)data)highlight)factors)that)affect)the)social)s?gma)associated)with)diabetes)and)point$to$the$need$for$more$public$educa9on$to$shir$percep9ons$about$diabetes,$
alongside$advances$in$pa9ent$treatment.)
