inves?ga?on)of)the)presence)and)impact)of)social)s?gma)on ... · 60%$ 40%$ 35%$ 29%$ 24%$ 23%$ 1$...

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.)