Patient-reported benefits from patient organization magazines and Internet-based peer support in Ménière’s disease
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Pa ien P e e ence and Adhe ence 2017:11 1851–1857
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O iginAl eseA ch
open access o scien i ic and medical esea ch
Open Access Full Tex A icle
h p://dx.doi.o g/10.2147/PPA.S142257
Pa ien - epo ed bene i s om pa ien
o ganiza ion magazines and in e ne -based pee
suppo in Méniè e’s disease
Vinaya Manchaiah1–4
ilma i Pyykkö5
Jing Zou5,6
hilla le o7
e na Ken ala7
1Depa men o speech and
hea ing sciences, lama Uni e si y,
Beaumon , TX, UsA; 2Depa men o
Beha iou al sciences and lea ning,
The swedish ins i u e o Disabili y
esea ch, linköping Uni e si y,
linköping, sweden; 3Audiology india,
Myso e, 4Depa men o speech and
hea ing, school o Allied heal h
sciences, Manipal Uni e si y, Manipal,
Ka na aka, india; 5Depa men
o O ola yngology, hea ing and
Balance esea ch Uni , Uni e si y
o Tampe e, Tampe e, Finland;
6Depa men o O ola yngology-
head and neck su ge y, cen e o
O ola yngology-head & neck su ge y
o chinese PlA, changhai hospi al,
second Mili a y Medical Uni e si y,
shanghai, china; 7Depa men o
O ola yngology, Uni e si y o helsinki,
helsinki, Finland
Objec i es: To acili a e sel -help, he Finnish Méniè e’s Fede a ion (FMF) p o ides a ious
kinds o suppo o pe sons wi h Méniè e’s disease (MD), which includes pa ien magazines (PM)
and In e ne -based pee suppo (iPS). The cu en s udy aimed o e alua e he bene i s epo ed
by MD pa ien s in e ms o PM and iPS.
Me hod: The s udy used a c oss-sec ional su ey design wi h a mix u e o s uc u ed and
open-ended ques ions adminis e ed online. A sample o 185 pa ien s om he FMF membe ship
da abase p o ided comple e da a.
Resul s: Nine y- wo pe cen o he esponden s a ed PM as use ul, o e y use ul. The
main bene i s o PM included: in o ma ion on he disease and complain s, in o ma ion abou
elemen s o pee suppo p og am, pa ien ’s expe ience wi h use ul posi i e case s udies, el-
e an news on MD, and in o ma ion o ac i i y o he FMF. O he 185 pe sons, 68 epo ed
ha hey did no ha e a need o pee suppo as hei disease was ei he in silen phase o
did no cause any annoyance. The main easons o nonuse we e: mild disease, pe sonal
easons, and p oblems in using. Rega ding he bene i s o iPS, 75% o ecen and 64% o
ch onic MD pa ien s said ha hey would bene i om such a p og am. The main bene i s o
iPS included: eliable in o ma ion on he disease and i s managemen , pee suppo use ul
o coping wi h he disease, in o ma ion abou managing MD symp oms, in o ma ion abou
managing a i ude, and in o ma ion abou he apy. Mo eo e , he s udy iden i ied di e en
g oups o indi iduals, which included: nonuse s o suppo om pa ien o ganiza ions, hose
who used he suppo bu did no eel hey bene i ed, and hose who used and also bene i ed
om such p og ams.
Conclusion: The cu en s udy esul s p o ide some in o ma ion abou he p e e ences o MD
pa ien s ega ding di e en o ms o suppo and could ce ainly p o e help ul while de eloping
wide suppo s a egies.
Keywo ds: Méniè e’s disease, ch onic condi ion, pee suppo , sel -help, sel -managemen
In oduc ion
Méniè e’s disease (MD) is a condi ion o he inne ea mani es ed in episodic e igo,
hea ing loss, ullness o he ea , and inni us. MD is a ch onic illness a ec ing abou
513 pe 100,000 pe sons.1 The majo i y o pe sons wi h MD a e o e 40 yea s o age,
and MD is mo e p e alen among emales han males. The a acks o MD may occu
in clus e s in which se e al a acks may occu wi hin a sho pe iod; on he o he
hand, yea s may pass be ween episodes making his disease e y unp edic able. MD
o igina es in he inne ea , al hough he e iology o he diso de is unknown. The con-
di ion has a ch onic bu o en unp edic able cou se, leading o unc ional limi a ions
co espondence: Vinaya Manchaiah
Depa men o speech and hea ing
sciences, lama Uni e si y, PO Box
10076, Beaumon 77010, TX, UsA
Tel +1 409 880 8927
Fax +1 409 880 2265
email [email p o ec ed]
Jou nal name: Pa ien P e e ence and Adhe ence
A icle Designa ion: O iginal Resea ch
Yea : 2017
Volume: 11
Running head e so: Manchaiah e al
Running head ec o: E alua ion o he bene i s epo ed by MD pa ien in e ms o PM and iPS
DOI: h p://dx.doi.o g/10.2147/PPA.S142257
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Manchaiah e al
and es ic ions, and is no ully es o ed by medical he apy
alone. MD also challenges he heal h ca e sys em.2 Da a om
he UK es ima ed he cos o MD equa ing abou €3,200
pe pe son pe annum, adding up o €520 million as annual
cos o heal h ca e in he UK alone. The indi ec cos s
a e subs an ial, wi h loss o ea nings con ibu ing o o e
€360 million pe annum.2
MD has many ad e se consequences on heal h (eg,
hea ing di icul y, balance p oblems), and on psychological
wel a e (inc eased anxie y and dep ession, a igue, social
isola ion) ha a ec bo h indi iduals and hei amily
membe s.3 The MD causes poo e heal h- ela ed quali y o
li e (HRQoL) and ul ima ely esul s in socie al p oblems.
Success ul managemen o ch onic condi ions equi es he
indi idual o ha e an unde s anding o hei ci cums ances
in o de o make decisions ega ding ea men , o be able
o pe o m ac i i ies ha help manage he condi ion, and o
apply abili ies ha main ain psychosocial unc ioning.4 Va i-
ous pa ien o ganiza ions ha e become awa e o he heal h
p oblems and li e consequences associa ed wi h MD and ha e
consequen ly es ablished suppo i e p og ams such as in o -
ma ional and educa ional sessions and pee suppo p og ams
( o e iew, see Heisle 5). These p og ams a e ocused on
p omo ing sel -managemen in which pa ien in ol emen ,
leade ship, and owne ship o ca e a e p io i ized in o de o
imp o e coping wi h he condi ion. One such app oach is he
use o pee suppo , which is an in e en ion ha le e ages
sha ed expe ience in o de o os e us , dec ease s igma,
and c ea e a sus ainable o um o seeking help and sha ing
in o ma ion.6
In con en ional pee suppo , he pa ien and p ac i ione
mee ace- o- ace o discuss he a ious aspec s o he disease
and i s managemen .7 I is ecommended ha hese mee -
ings ake place equen ly and include an ac ion plan wi h
speci ic sel -ca e asks.5 Al e na i ely, some he apis s and
o ganiza ions use a bookle -based sel -managemen app oach
o acili a e sel -help in people wi h a ious ch onic condi-
ions. Such app oaches ha e shown o be an inexpensi e and
e o less way o help people deal wi h hei symp oms in
MD and we e ound o be bene icial when compa ed wi h a
con ol g oup wi hou bookle s.8,9
In ecen yea s, social media and In e ne -based sel -
help and pee suppo p og ams ha e become popula in
he managemen o ch onic condi ions.8 Such examples
o In e ne -based sel -help and guided he apies a e also
shown o be e ec i e in he managemen o hea ing loss,
inni us, and balance diso de s.10–14 The sel -help p og ams
o en ha e demanding ecommenda ions (eg, medica ion
egimen, ins uc ions o change a i ude and expec a ions,
ca e ul sel -moni o ing, and die and exe cise p og ams).
Hence, he success o many o hese sel -help p og ams o
ch onic disease depends la gely on he willpowe and abili y
o pe sons o ollow he ins uc ions. To complica e ma e s
u he , many pe sons ace addi ional challenges such as
mul iple como bidi ies, physical limi a ion, and poo suppo
om amily and socie y.5 Howe e , wi h he mode n in o -
ma ion echnology and elec onic social ne wo ks, pa ien
o ganiza ions ha e de eloped new oppo uni ies o p o ide
pe sonal, g oup-based and indi idual In e ne -based sel -
help p og ams. These no el sel -help and sel -managemen
p og ams a e a less expensi e when compa ed o adi ional
clinical help and suppo o e ed by he medical and eha-
bili a ion p o essionals. We belie e ha a heal hy app oach
would be o use such p og ams as supplemen a y o disease
managemen in o de o imp o e heal h ou comes and educe
he social bu den o ch onic condi ions such as MD. How-
e e , no much esea ch cu en ly exis s o olun a y pa ien
o ganiza ions o de elop a me hodology o de e mining wha
blend o eal/ i ual hyb id p oduc s, se ices, and p ocesses
complemen hei co e business and s a egic ajec o y.
The Finnish Méniè e’s Fede a ion (FMF) p o ides a ious
ypes o assis ance o acili a e sel -help and sel -managemen
o i s membe s. These include: 1) qua e ly pa ien maga-
zines (PM) Méniè e-Pos and 2) In e ne -based pee suppo
(iPS) p og am. The qua e ly PM is p o ided ou imes a
yea and con ains in o ma ion abou a ious kinds o he apy,
disease desc ip ion, ips o adap ing and coping wi h he
condi ion, posi i e case s udies, and doc o s eply o spe-
ci ic ques ions asked by pe sons wi h MD. The iPS p og am
includes compu e -based disease assessmen , an online sel -
help p og am o acili a e coping, and compa ison o pa ien s’
condi ion and p og ess wi h simila e e en cases.12–14 These
wo ypes o assis ance a e aimed o p o ide in o ma ion,
change he a i ude, and imp o e o cope well wi h he
condi ion. The in o ma ion is supplemen a y o he ou ine
medical ca e and aims o p omo e sel -managemen o MD
among he a ec ed indi iduals and hei signi ican o he s.
The cu en s udy aimed o e alua e he bene i s epo ed
by he FMF membe s (ie, MD pa ien s) abou PM and iPS.
Me hod
s udy design
The s udy used a c oss-sec ional su ey design. The FMF
con ac ed hei membe s, asking hem o comple e an
ex ensi e ques ionnai e on hei symp oms ela ed o MD.
As he da a p esen ed in his s udy we e ga he ed by a
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E alua ion o he bene i s epo ed by MD pa ien in e ms o PM and iPS
pa ien -led o ganiza ion, he da a become pa o he public
egis e . Hence, he cu en s udy did no equi e e hical
app o al acco ding o he Medical Resea ch Ac , Finland
(Law 488/1999).15 The ques ionnai e was adminis e ed using
Doodle (www.doodle.com), which is an online pla o m
used o c ea e su eys and poll-based ools. Comple ing and
e u ning he ques ionnai e was conside ed as consen .
Pa icipan s
A con enience sample o 226 subjec s (ie, hose ha ing
In e ne access) was d awn om he FMF membe ship
da abase (952 membe s) and hey we e in i ed o pa icipa e
in he su ey, o which a o al o 185 eplied (ie, esponse
a e o 82%). The mean age o pa icipan s was 55±5 yea s.
F om he pa icipa ing subjec s, 136 (ie, 73.5%) we e emales
and 49 (ie, 26.5%) we e males, e lec ing he gende dis i-
bu ion o FMF.
Da a collec ion
The 12-i em ques ionnai e was used o assessing he use-
ulness o di e en ypes (ie, magazines om pa ien o ga-
niza ions and iPS) o suppo p o ided by he FMF. In he
su ey, he e we e 6 s uc u ed ques ions on he use ulness o
a ious o ms o suppo and hei ou comes and 7 open-ended
ques ions in ha he pe sons could e bally commen on he
s uc u ed ques ions and p o ide easoning o hei eplies
(Table 1). The use ulness and applicabili y was a ed wi h a
5-poin scale om “no bene i ” o “signi ican bene i .” Fo
each o hese s uc u ed ques ions, he e we e 1 o 2 boxes
o open commen s asking o epo why and/o how.
All he pa icipan s we e asked ques ion abou how he
PM and iPS we e applicable o bo h ecen (ie, onse o
he disease o less han 1 yea ) and ch onic (ie, onse o he
disease o a leas 1 yea o longe ) MD pa ien s. The FMF
membe s ha e an a e age du a ion o MD as 16.5 yea s
(SD: 12 yea s) wi h o e 95% o people ha ing had MD o
longe han 1 yea . Hence, we el i was app op ia e o ask
hem abou how he suppo ma e ials we e app op ia e o
bo h ecen and long-s anding MD pa ien s.
Da a analysis
Responses o open-ended ques ions we e analyzed using
he quali a i e con en analysis.16 The open ques ions we e
analyzed by wo au ho s (IP and VM) and scaled based on
In e na ional Classi ica ion o Func ioning, Disabili y, and
Heal h (ICF) in o di e en ca ego ies, when app op ia e.
The ea e , a consensus was made and he da a we e used
o s a is ical analysis and p esen a ion.
Desc ip i e s a is ics we e explo ed on he da a om
s uc u ed ques ionnai es. A nonpa ame ic Wilcoxon signed-
ank es was used o explo e he ela ionship be ween he
demog aphic a iables and he pa icipan s’ esponses. This
was ollowed by he use o a “K-means clus e analyses
(ie, nea es neighbou analysis)” o p o ile he esponses o
pa icipan s. The K-means quick clus e algo i hm o e s a
clus e analysis o he a iables and aims o iden i y ela-
i ely homogenous g oups o cases and/o a iables based
on selec ed cha ac e is ics. A p- alue o 0.05 was used o
s a is ical signi icance in e p e a ion.
Resul s
Bene i s om pa ien - ocused magazines
F om he 185 eplies, 96% o he people ound he con en
o he PM use ul (Table 2). When explo ing he bene i s he
pa ien ecei ed om he PM using open-ended ques ions,
131 esponden s ga e 222 eplies on he con en o he PM
and how i in luenced hei well-being (Figu e 1). The mos
equen ly occu ing esponses abou he bene i s o PM
included: in o ma ion on he disease and complain s (n=89),
in o ma ion abou elemen s o pee suppo p og am (n=42),
pa ien ’s expe ience wi h use ul posi i e case s udies
(n=25), and ele an news on MD (n=23).
Bene i s om he iPS p og am
We asked abou he use ulness o he iPS o ch onic MD
pa ien s, and o he 185 esponden s, 117 said hey had used
he iPS and he emaining 68 said hey did no comple e he
iPS al hough hey had s a ed i . We in e p e his o mean
ha hose wi h a long his o y o MD know how o manage
he disease su icien ly well, and hey we e no willing o
change hei a i ude owa d he illness.
We asked he use s’ opinion on he use ulness o iPS o
hose wi h less han 1 yea since diagnosis (acu e MD) and o
hose wi h a disease his o y longe han 1 yea (ch onic MD).
Table 1 s uc u ed ques ions used in he su ey
how use ul do you conside Méniè e pa ien magazines (appea ing ou
imes in a yea ) om Finnish Méniè e’s Fede a ion?
how much help could a ecen ly disabled (less han 1 yea ) Méniè e
disease pe son ob ain om an in e ne -based pee -suppo p og am?
how much help could a ch onically disabled (1 yea o mo e) Méniè e
disease pe son ob ain om an in e ne -based pee -suppo p og am?
A e pee suppo , do you unde s and you Méniè e disease in a
di e en way o in a new ligh ?
could a pee suppo p og am suppo you collabo a ion wi h you
doc o in a he apeu ic aspec ?
i some o he disease would disable you, would you like o ha e a
p og am simila o he pee suppo o Méniè e disease?
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Manchaiah e al
Fo acu e MD, 68% o he pe sons ega ded he iPS as use-
ul o e y use ul, whe eas only 1 pe son ega ded i as no
use ul a all (Table 2).
When answe ing he ques ion abou he bene i s o iPS
o acu e MD pa ien s, o he 185 subjec s, only 93 espon-
den s p o ided answe s o open-ended ques ions. They
p o ided 159 eplies o acu e disease and 99 eplies o
ch onic disease (Figu e 2). The mos impo an bene i s o
acu e MD included: eliable in o ma ion on he disease and
i s managemen (n=64), pee suppo hey ecei ed ha was
use ul o enhance coping wi h he disease (n=29), in o ma-
ion abou managing he MD symp oms (n=24), in o ma ion
abou managing he a i ude (n=10), and in o ma ion abou
he apy (n=10).
F om he 185 pe sons, 51% ega ded ha he iPS would be
use ul o e y use ul in ch onic MD (Table 2). Two pe sons
eplied ha hey did no see o expe ience any bene i om he
p og am and p e e ed pe sonal pee suppo (n=1), o aking
a 3-day cou se on coping skills o li ing wi h MD (n=1).
Fo open-ended ques ions, only 66 ou o 185 esponden s
eplied and p o ided 99 esponses in o al (Figu e 2). Mos
o he pe sons expe ienced in o ma ion on he mul i ace ed
clinical pic u e o MD o be o u mos impo ance (n=27).
I was ollowed by pee suppo p o ided by he p og am
(n=19). The iPS p og am helped a la ge g oup o pe sons o
cope wi h he disease and limi a ions b ough by he disease.
Se en een pe sons epo ed managing o li e well wi h he
disease. New he apeu ic possibili ies we e also o in e es in
some o he pe sons (n=9). O he i ems we e suppo p o ided
by he pa ien o ganiza ion, compa ison wi h o he s, lea ning
om o he pe sons, and change o one’s own a i ude. Fo
11 pe sons, he iPS was no o any use.
Using he nonpa ame ic Wilcoxon signed- ank es , we
compa ed he possible di e ences in e ms o esponden s’
opinions abou he bene i s o iPS o ecen and ch onic MD
pa ien s. The esul s sugges ha he esponden s el ha
pa ien s wi h ecen MD would bene i signi ican ly mo e
om he iPS (p,0.001).
We also asked whe he a e passing iPS i hey unde -
s and MD in a di e en way. F om hose answe ing he
ques ion, 85 o 185 pe sons conside ed changes in hei
unde s anding o MD as much o e y much (Table 2).
Table 2 Use ulness and applicabili y o he pa ien magazine (PM) and i ual in e ne -based pee suppo (iPs) p og am
Ques ions Do no know (%) No (%) Mode a ely (%) Much (%) Ve y much (%)
how use ul do you conside he PM appea ing ou imes in a yea ? 3 1 7 38 49
how much help did you ge om he iPs ( ecen MD)? 24 1 7 32 36
how much help did you ge om he iPs (ch onic MD)? 32 2 15 29 22
Do you unde s and you MD be e ha ing ollowed he iPs? 37 2 16 27 19
Abb e ia ion: MD, Méniè e’s disease.
Figu e 1 Use ulness o he con en ound in pa ien magazines.
No e: The g aph is based on 222 eplies om 131 esponden s o an open-ended ques ion.
Abb e ia ion: FMF, Finnish Méniè e’s Fede a ion.
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E alua ion o he bene i s epo ed by MD pa ien in e ms o PM and iPS
Six y-eigh people did no wo k wi h he p og am o inish he
p og am and he e o e could no eply on possible changes.
Howe e , 29 pe sons conside ed ha iPS changed hei
a i ude only mode a ely, and 3 pe sons epo ed ha hey
expe ienced no change. I ems ha changed a e passing he
iPS we e mos commonly based on be e managemen o
hei p oblems (n=45) and on ecei ing mo e in o ma ion
abou MD (n=13).
Conce ning he usabili y o he iPS, o he 31 esponden s,
15 said he p og am was easy o use while 16 eplied ha
hey had p oblems using he p og am. The main easons o
di icul y using he p og am included: p og am oo long and
complica ed (n=11); da a ailu e p oblem in usage (n=2);
pe sonal easons (n=2); and el he p og am unnecessa y
and/o no use ul (n=1).
The pa icipan s we e asked o indica e he eason o
no using he iPS, and 51 esponses we e ecei ed. The main
eason o no using he p og am was ha he pe sons claimed
ha hei disease has s opped and/o was no bo he ing hem,
and hence o h el ha he e would be no bene i in using he
p og am (n=20). The second mos (n=17) common we e he
pe sonal easons (eg, no ime, being lazy, e c.). The o he ea-
sons included: insu icien in o ma ion on iPS (n=7); p og am
was oo complex (n=2); o he disease in e e ed (n=1); and
wo had p oblems using i (eg, o go en passwo d, b oken
compu e , able p oblem).
Dis ibu ion o MD pa ien s based on
hei p e e ences o he suppo p o ided
by he FMF
We pe o med K-means clus e analysis on he pa icipan s’
esponses o p e e ence and bene i s o he di e en kinds
o suppo p o ided by he FMF. This analysis helped us
unde s and he suppo p e e ences o he g oups. The analy-
sis esul ed in h ee clus e s. The esponden s in “clus e 1”
(n=42) sugges ed hey used di e en kinds o suppo p o-
g ams o e ed by he FMF, al hough hey epo ed o ha e
limi ed bene i s om hese p og ams. Howe e , hey epo ed
o possess signi ican knowledge abou hei disease and
appea ed o app ecia e he PM. The esponden s in “clus e 2”
(n=57) we e basically he nonuse s, as hey did no engage o
use any o he suppo p o ided by he FMF. The “clus e 3”
(n=86) included people who app ecia ed he bene i o he
p og am, bo h in acu e and ch onic s ages o he disease. They
also unde s ood hei complain s be e and ecommended a
simila p og am o o he diseases. The age o pa icipan s
did no signi ican ly change he clus e ca ego ies. Howe e ,
esponden s in “clus e 3” p e e ed he use and con en
Figu e 2 Use ulness o he con en o he in e ne -based pee suppo p og am on acu e and ch onic Méniè e’s disease pa ien s.
No e: The g aph is based on 159 eplies o acu e disease and 99 eplies o ch onic disease om 93 esponden s o an open-ended ques ion.
Abb e ia ions: FMF, Finnish Méniè e’s Fede a ion; MD, Méniè e’s disease.
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Manchaiah e al
o he PM mo e as compa ed o he esponden s in o he
clus e s (p=0.002).
Discussion
In 2002, he Wo ld Heal h O ganiza ion a gued ha imp o -
ing pe sons’ sel -managemen in ch onic disease would ha e
a g ea e impac on he heal h o popula ions han any
imp o emen by medical ea men s.17 Di e en ypes o
sel -help and pee suppo p og ams ha e been launched since
hen, which include: bookle -based sel -help, elephone calls,
web-based eleheal h p og ams, and pe son- o-pe son pee
suppo p og ams.18 A combina ion o hese p og ams (ie,
PM, assis ed elecommunica ions, and iPS) can be adap ed
o a eas whe e limi ed access o se ices as ad oca ed by
he FMF o p omo ing sel -managemen in MD. A co e
elemen o hese p og ams is he p o ision o social suppo ,
skill de elopmen o cope wi h illness in e e ence, imp o ed
managemen o daily ac i i ies, and heal h condi ion man-
agemen . How his in o ma ion is p esen ed and adop ed is
impo an in p omo ing hei ele ance, accep abili y, and
usabili y o pa icipan s. S a egies o mi iga e pe cei ed
s igma associa ed wi h ha ing a ch onic illness also need
o be conside ed, as do s a egies o p omo ing pa icipan
in ol emen in a ec ing a i ude changes. The ou come
a ies be ween di e en suppo e o s, bu imp o emen s
in quali y o li e, social a endance, and daily coping ha e
been epo ed.14,18–20 Howe e , mos o hese p og ams we e
labo ious o use s and equi ed in en ional e o s o make
hem easily accessible.
Pa ien - epo ed bene i s om di e en
ypes o suppo
The cu en p og am is cons uc ed and based on he
p inciples o adi ional pee suppo – meaning ha he
p oblems, limi a ions, and es ic ions a e coming om
he pa ien s hemsel es; u he mo e, he solu ions a e also
pa ien o igina ed. The cu en s udy esul s sugges ha a
la ge pe cen age o s udy sample el ha hey bene i ed
om PM (~94%) and also om iPS (~98%). Howe e , he
clus e analysis indica es some o hese indi iduals had lim-
i ed bene i s (ie, clus e 1). Ne e heless, he bene i s we e
mainly ela ed o aspec s such as sel -o ien ed in o ma ion
abou he disease and i s managemen , in o ma ion abou
pee suppo p og ams, posi i e case s udies, and also eply
om he doc o s ega ding speci ic ques ions.
The cu en s udy esul s sugges ha he e is a need
o di e en kinds o suppo me hods, and hese should
be supplemen a y o each o he (eg, PM and iPS). In he
ace o challenges wi h ega d o cos s and he a ailabili y
o p o essionals, he new iPS p og am, wi h possible assis-
ance o social media, is especially p omising o MD.14
Howe e , i appea s ha many people wi h ch onic MD did
no comple e he iPS p og am, as hey el hey did no need
he p og am. This may be ela ed o he disease no being
e y se e e and/o he people wi h long-s anding condi ions
ha ing al eady lea ned coping s a egies success ully and
hus may no see he ad an age o such p og ams. Mo eo e ,
some elemen s o di icul y using he iPS p og ams we e
also disco e ed (eg, oo long and complica ed, complex
p og am). Mo eo e , he s udy iden i ied di e en g oups o
indi iduals, which included: nonuse s o suppo om pa ien
o ganiza ions, hose who used he suppo bu did no eel
hey bene i ed, and also hose who used and also bene i ed
om such p og ams. I is impo an o heal h ca e p o ide s
and also pa ien o ganiza ions o unde s and his, as hey can
hence o h de elop s a egies o imp o e accessibili y and
accep abili y o such p og ams.
s udy limi a ions
Ou s udy sample comes om pa ien o ganiza ion, and we
also used a con enience sample and included only hose who
had e-mail access and who we e amilia wi h he In e ne .
Thus, he esul s apply speci ically o such popula ions and
may no be ep esen a i e o a b oade MD popula ion. Some
esea che s ha e a gued ha In e ne -based samples may
ac ually be mo e ep esen a i e han adi ional samples,21
al hough his can be ques ionable in he con ex o MD
pa ien s wi hin he FMF membe ship. The MD a ec s men
and women equally, al hough in he cu en sample 73.5%
we e women. This may sugges ha compa ed o men,
women a e mo e likely o join pa ien o ganiza ions and
possibly also pa icipa e in su ey ques ionnai es. 22 Hence,
he s udy sample may no be ep esen a i e o he gene al
MD popula ion. Also, when compa ing In e ne -based da a
collec ion wi h pape -and-pencil e sions, In e ne da a
appea o be eliable and need o be answe ed simila ly o
he way hey a e answe ed when hey a e adminis e ed ia
adi ionally mailed pape ques ionnai es.23 Mo eo e , all
pa icipan s we e asked o espond abou he bene i s o iPS
o bo h ecen and ch onic MD pa ien s. Al hough, mos
pa icipan s may ha e long-s anding MD and may ha e
gone h ough ea ly s ages o adap ing o MD, hey may no
emembe all o hei expe iences, and hei answe s in his
su ey ha e o be ead wi h cau ion.
Conclusion
The medical managemen o MD is no su icien o achie e
op imal ou come, and he e o e supplemen a y suppo may
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Submi you manusc ip he e: h p://www.do ep ess.com/pa ien -p e e ence-and-adhe ence-jou nal
Pa ien P e e ence and Adhe ence is an in e na ional, pee - e iewed,
open access jou nal ha ocuses on he g owing impo ance o pa ien
p e e ence and adhe ence h oughou he he apeu ic con inuum. Pa ien
sa is ac ion, accep abili y, quali y o li e, compliance, pe sis ence and hei
ole in de eloping new he apeu ic modali ies and compounds o op imize
clinical ou comes o exis ing disease s a es a e majo a eas o in e es o
he jou nal. This jou nal has been accep ed o indexing on PubMed Cen al.
The manusc ip managemen sys em is comple ely online and includes a e y
quick and ai pee - e iew sys em, which is all easy o use. Visi h p://www.
do ep ess.com/ es imonials.php o ead eal quo es om published au ho s.
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1857
E alua ion o he bene i s epo ed by MD pa ien in e ms o PM and iPS
be needed. Howe e , he o ms o suppo can be di e en
and some imes may o e lap. The cu en s udy e alua ed he
bene i s epo ed by MD pa ien s in e ms o PM and iPS.
PM con aining posi i e case epo s, doc o ’s eplies, and
ele an in o ma ion on he disease was conside ed use ul
and p o ided sel -guided suppo and coping possibili ies.
iPS was used by 63% o he use s (n=117), o whom 98%
epo ed ha he p og am p o ided was bene icial. Mo eo e ,
he s udy iden i ied di e en g oups o indi iduals, which
included: nonuse s o suppo om pa ien o ganiza ions,
hose who used he suppo bu did no eel hey bene i ed,
and also hose who used and bene i ed om such p og ams.
These s udy indings can ce ainly p o e help ul while de el-
oping suppo s a egies o pa ien s wi h MD.
Acknowledgmen s
Au ho s acknowledge he suppo om he FMF o help
wi h da a collec ing o his s udy.
Disclosu e
The au ho s epo no con lic s o in e es in his wo k.
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