TELEMEDICINE MULTIMEDIA SYSTEMS TO
SUPPORT NEURODEGENERATIVE
PARTICIPATORY MANAGEMENT
DIOGO JORGE MENEZES BORGES
DISSERTAÇÃO DE MESTRADO APRESENTADA
À FACULDADE DE ENGENHARIA DA UNIVERSIDADE DO PORTO EM
ENGENHARIA BIOMÉDICA
M
2015
Telemedicine Mul imedia Sys ems o
Suppo Neu odegene a i e Diseases
Pa icipa o y Managemen
Diogo Menezes Bo ges
Supe iso : PhD João Paulo Sil a Cunha
Mes ado em Engenha ia Biomédica
July, 2015
c
Diogo Menezes Bo ges: July, 2015
Faculdade de Engenha ia da Uni e sidade do Po o
Telemedicine Mul imedia Sys ems o Suppo
Neu odegene a i e Diseases Pa icipa o y Managemen
Diogo Menezes Bo ges
Disse a ion submi ed o Faculdade de Engenha ia da Uni e sidade do Po o
o ob ain he deg ee o
Mas e in Biomedical Enginee ing
P esiden : PhD José Machado da Sil a
Re e ee: PhD Ped o B andão
Re e ee: PhD João Paulo Sil a Cunha
July, 2015

À Joana, po semp e ac edi a es e e es o melho em mim...
Abs ac
Pa kinson’s disease (PD) is he second mos common neu odegene a i e disease a e Alzheime ’s
a ec ing mainly people o e 60 yea s. Due o he popula ion as aging and o ecas o a g ea
inc ease in he numbe o PD pa ien s, his disease has been he ocus o abundan a en ion om
he scien i ic communi y. Telemedicine, an a ea known o p o iding heal hca e se ices a a
dis ance, has aken a g ea in e es in PD. Wi h he ecen echnological de elopmen s, an ample
numbe o p oposals ha e been made in he las decade o be e moni o his illness, empowe ing
specialized physicians wi h mo e and be e in o ma ion o suppo he diagnosis and managemen
o his disease.
In his disse a ion he design and de elopmen o a mul imedia pla o m in ended o allow
a be e PD emo e home moni o ing h ough an easy accessible, highly usable, and in eg a ed
sys em is p esen ed. The MoPA sys em, as well as o he sys ems in li e a u e, p o ides di e si ied
solu ions o ob ain mo e pa ien ’s daily li ing and quali y o li e (QoL) in o ma ion. Ne e heless,
con a y o li e a u e, ou sys em allows he medical s a o access a ideo eposi o y whe e hey
can isualize hei pa ien s pe o ming mo o asks, ela ed o he Uni ied Pa kinson’s Disease
Ra ing Scale (UDRPS), ei he in hei home en i onmen o a medical appoin men s. The e o e,
he use s a e able o co ela e he e ie ed isual in o ma ion wi h all o he ele an da a sen by
he pa ien s ega ding hei QoL and wi h he pe sonally assessed in o ma ion,by he medical s a ,
a he medical appoin men s .
The web-based sys em was de eloped using he web applica ion amewo k CodeIgni e ,
XAMPP as he c oss-pla o m web se e and MySQL as he da abase. The de elopmen used
a pa icipa o y me hodology, in ol ing he po en ial end use s om he medical s a o Hospi al
de São João (HSJ). A he end o he p ocess, a use s’ g oup was asked o ill an online o m whe e
he po en ial and use accep ance le el o his sys em was assessed. The esul s led us o conclude
ha he MoPA sys em is g ea ly accep ed by all s akeholde s and shows g ea po en ial o imp o e
he moni o ing o PD pa ien s in hei home en i onmen .
Keywo ds: Pa kinson’s Disease. Telemedicine. Mul imedia sys ems. Moni o ing.
iii

“Don’ c y because i ’s o e . Smile because i happened.”
D .Seuss
xi
Con en s
Lis o Figu es xix
Lis o Tables xxi
Lis o Abb e ia ions xxiii
1 In oduc ion 1
1.1 Con ex andMo i a ion............................... 1
1.2 Objec i es...................................... 2
1.3 Resul edPublica ions................................ 2
1.4 S uc u e....................................... 3
I S a e o he A 5
2 Pa kinson’s Disease 7
2.1 ClinicalFea u es .................................. 7
2.2 Moni o ing ..................................... 8
2.3 T ea men ...................................... 9
2.3.1 Dopamine Replacemen . . . . . . . . . . . . . . . . . . . . . . . . . . 9
2.3.2 Deep B ain S imula ion . . . . . . . . . . . . . . . . . . . . . . . . . . 9
2.3.3 Demanded In as uc u es and Human Resou ces . . . . . . . . . . . . . 9
2.3.4 Rela edCos s................................ 10
2.3.5 P e alence and Incidence . . . . . . . . . . . . . . . . . . . . . . . . . . 11
3 Telemedicine: Moni o Pa kinsonism 13
3.1 Me cu yLi e P ojec Web Po al . . . . . . . . . . . . . . . . . . . . . . . . . . 14
3.2 Timed-Up-and-Go ................................. 15
3.3 MobileSel -Managemen .............................. 16
4 Case S udy Hospi al São João 19
4.1 Nu seCallCen e .................................. 19
4.1.1 Addi ional appoin men s . . . . . . . . . . . . . . . . . . . . . . . . . . 20
4.2 Objec i e ...................................... 21
4.3 Me hodology .................................... 22
4.4 Resul s........................................ 22
4.5 Conclusions and p oposed me hodology . . . . . . . . . . . . . . . . . . . . . . 23
xiii
xi CONTENTS
II Telemedicine mul imedia sys ems o suppo Neu odegene a i e diseases pa -
icipa o y managemen 25
5 Design o he p oposed sys em 27
5.1 Sys emRequi emen s................................ 27
5.1.1 Pa ien Web Pla o m Requi emen s . . . . . . . . . . . . . . . . . . . . 28
5.1.2 Medical S a Web Pla o m Requi emen s . . . . . . . . . . . . . . . . 29
5.2 Sys emA chi ec u e................................. 30
5.3 P oposedsolu ion.................................. 31
5.3.1 Pa ien WebPla o m............................ 31
5.3.2 Hospi alWo k low............................. 34
5.3.3 Da abase .................................. 36
5.4 P oposedVideoApp ................................ 39
6 Resul s and Valida ion 41
6.1 F on page...................................... 41
6.2 Pa ien WebIn e ace................................ 42
6.2.1 Sel -assessmen Dia y . . . . . . . . . . . . . . . . . . . . . . . . . . . 43
6.2.2 Non-mo o symp om web o m . . . . . . . . . . . . . . . . . . . . . . . 44
6.2.3 Calenda .................................. 44
6.2.4 Cha ..................................... 45
6.2.5 VideoGalle y................................ 46
6.3 Hospi alWebIn e ace ............................... 47
6.3.1 Web o mscha s .............................. 47
6.3.2 Pa ien s................................... 48
6.3.3 Dia ies ................................... 50
6.3.4 Galle y ................................... 53
6.3.5 MyCalenda ................................ 54
6.3.6 Cha ..................................... 54
6.4 VideoApp...................................... 55
6.5 Valida ion...................................... 55
7 Conclusions and Fu u e Wo k 59
Re e ences 61
Index 67
A Uni ied Pa kinson’s Disease Ra ing Scale 67
B Guidelines used in HSJ nu se call cen e 75
C Table o e en s p esen ed o he pa ien a he appoin men . 79
D Cos s and du a ion o jou neys o HSJ o pa ien s li ing ou side Po o. 83
E MoPA’s Valida ion Fo m p esen ed o he medical s a o HSJ. 87
F DCE 2015 Pa icipa ion Diploma 91
CONTENTS x
G EMBC 2015 Accep ance Le e 93
H EMBC 2015 A icle 95
I Deep B ain S imula ion Su ge y Cou se a Hospi al São João gi en by Med onic 101

Lis o Figu es
2.1 To al Cos s s a i ied by disease s age and coun y. The g een colo ep esen s
he i s s age o he disease while he g ay colo indica es he las s age o PD.
(Adap ed om (1)).................................. 11
2.2 A e age consul a ions, pe PD pa ien , du ing he s udy pe iod o six mon hs(Adap ed
om (1)). ...................................... 12
2.3 Es ima e o indi iduals, wi h mo e han 50 yea s old, wi h PD o 2030 (Adap ed
om (2)). ...................................... 12
3.1 (a) The a chi ec u e o he p oposed moni o ing sys em. The so wa e se ices
uns a h ee ie s: cen al po al se e , he pa ien ’s hos s and clinician’s hos s.
To ensu e da a secu i y a cen al se e is made a ailable o all h ough an in e ne
connec ion. (b) Sc een sho o he Me cu yLi e web-applica ion (adap ed om (3)). 15
3.2 (a) iTUG es phases and SP implemen a ion in he use ’s ches o bel (b) iTUG
SP’s app displaying he pa ame e s o he es (adap ed om (4)).......... 16
3.3 (a) Medica ion in ake sc een. Fo each dose and ype o pill he e is an associa ed
image so ha he use can easily emembe which kind o medicine ook and when.
Mo eo e , he use can indica e i he medica ion was aken in he p esc ibed ime.
(b) Meals ques ionnai e sc een. The pa ien is able o p o ide in o ma ion abou
wha is ea ing du ing he day (adap ed om (5)). ................. 17
3.4 (a) Medica ion main menu (b) Add in ake (c) Medica ion eminde (d) Pop-up o
MyDa a (e) MyDa a main sc een ( ) MyDay (adap ed om (6)). ......... 18
4.1 Ac i i y diag am o he cu en p ac ice exis en in HSJ nu se call cen e . . . . . . 21
4.2 Rep esen a ion o all dis ic s o esidence om all he selec ed 25 pa ien s and
Po o. ........................................ 22
5.1 Use Case diag am illus a ing he equi emen s o bo h ac o s ha will in e ac
wi h heMoPApla o m. .............................. 28
5.2 De ailed use case diag am illus a ing he equi emen s o he ac o pa ien o he
MoPApla o m.................................... 29
5.3 De ailed use case diag am illus a ing he equi emen s o he ac o medical s a
o heMoPApla o m................................ 30
5.4 P oposed sys em a chi ec u e o he MoPA pla o m. . . . . . . . . . . . . . . . 31
5.5 P oposed wo k low diag am o MoPA Pa ien Web Pla o m. . . . . . . . . . . . 33
5.6 Rep esen a ion o sec ions om he MoPA pla o m wi h which use s will in e ac
wi h. (a) Rep esen a ion o he login page. (b) Pa ien Web pla o m dashboa d
page. He e he pa ien has links o i e di e en sec ions o he pla o m. (c) Sel -
assessmen dia y, whe e pa ien can add desc ip ion o disease’s ele an e en s.(d)
Web o m ela ed o a sel -e alua ion o he ac i i ies o daily li e. . . . . . . . . . 34
x ii
x iii LIST OF FIGURES
5.7 P oposed wo k low diag am o MoPA Medical S a Web Pla o m. . . . . . . . 35
5.8 Illus a ion o some o he ea u es expec ed on he Medical S a web pla o m. (a)
Videocon e ence be ween he medical s a and pa ien . Pa ien can pe o m some
mo o asks and he use can sa e no es. (b) Video Galle y o ideos uploaded by
he pa ien o by any membe o he medical s a . (c) Illus a ion o he du a ion
and ime o occu ence o ce ain e en s o high impo an in he managemen o
he disease, pe day o he mon h. (d) Resul s o pa ien s’ web o m esul s, pe
da e,shownasag aph................................ 36
5.9 P oposed en i y– ela ionship model o he MoPA pla o m . . . . . . . . . . . . 37
5.10 Mobile app p oposed o eco d pa ien ’s du ing appoin men . (a) F on page o app
whe e he use ’s c eden ials a e eques ed. (b) The menu whe e he use should
inse he name o he pa ien desi ed o eco d. (c) Video Galle y o all ideos
uploaded by he pa ien o medical s a . (d) Chosen ideo om he galle y. (e)
Reco ding ideo o pa ien pe o ming mo o asks du ing he consul a ion. . . . 40
6.1 MoPA’s F on page. (a) F on page iew p esen ed o all use s accessing he MoPA
pla o m. (b) The expec lux o usage o all use s accessing he on page. . . . 42
6.2 View and expec ed lux o usage o all use s accessing he pa ien ’s web pla o m
dashboa d. (a) MoPA pa ien ’s web in e ace dashboa d. (b) The expec lux o
usage o all use s accessing he dashboa d. . . . . . . . . . . . . . . . . . . . . 43
6.3 (a) Sel -assessmen dia y iew. The able illed wi h he hou s in which he e en s
occu ed, indica ed by he ed colo . On he igh side, he sec ion o indica e he
medica ion on ha day and an addi ional loca ion o mo e e en s o in e es . (b)
Sugges ed ac i i y diag am o he pa ien in his sec ion. . . . . . . . . . . . . . 44
6.4 (a) Illus a ion o he non-mo o symp oms web o m. The pa ien is shown he
ques ion numbe a he op o he page and he ex below i . In addi ion, in ed
colo , he possible answe s he pa ien can selec ed a e ep esen ed. On he con-
a y, he selec ed answe is p esen ed in a g een colo . Below is he "Nex ques-
ion" bu on, which i an answe is selec ed, will lead o he ollowing ques ion.
(b) The ac i i y diag am o he p esen sec ion. . . . . . . . . . . . . . . . . . . 45
6.5 Illus a ion o pa ien ’s calenda (a) The use can see u u e appoin men s o sched-
uled asks ela ed o PD moni o ing and schedule pe sonal e en s. (b) The ac i i y
diag am o he p esen sec ion. . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
6.6 Pa ien ’s cha iew(a) The use can ead pas messages, w i e and send new mes-
sages o he medical s a . E e y ime he use sends a message, and email is sen
o he medical s a email accoun wa ning o his new message. (b) The ac i i y
diag am o he p esen sec ion. . . . . . . . . . . . . . . . . . . . . . . . . . . . 46
6.7 Rep esen a ion o pa ien ’s ideo galle y (a) He e he use can upload ideos and
add a desc ip ion a ached. Addi ionally, pa ien is capable o obse ing p e ious
uploaded ideos. Ne e heless, i no capable o uploading o eco ding a ideo
hen should answe a b ie web o m on mo o capabili ies. (b) The ac i i y dia-
g am o he p esen sec ion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 47
6.8 Medical s a Dashboa d (a) He e he use can check u u e appoin men s and
ecei e in o ma ion o ecen submissions o messages, ideos o answe ed web-
o ms om e e y pa ien . In addi ion, om he dashboa d as access o all a ailable
sec ions. (b) The ac i i y diag am o he p esen sec ion. . . . . . . . . . . . . . 48
LIST OF FIGURES xix
6.9 Non-mo o web o m cha s (a) He e he use should selec a desi ed pa ien so
o see he web o ms esul s ep esen ed as a cha . Mo eo e , i he use wishes
o obse e he esul s in a mo e de ailed manne he should ollow he link View
De ails (b) The ac i i y diag am o he p esen sec ion. . . . . . . . . . . . . . . 49
6.10 Pa ien Medical Reco d (a) View o pa ien ’s medical eco d. He e he use can see
some s a is ics ela ed o pa ien ’s a ending o he hospi al and see a lis o pa ien s
egis e ed in he sys em. By clicking in one o he pic u es he use is edi ec ed
o he pa ien ’s espec i e page. (b) The ac i i y diag am o he p esen sec ion. . 49
6.11 New Pa ien Medical Reco d (a) View o some o he eques ed in o ma ion o he
new pa ien o be added(b) The ac i i y diag am o he p esen sec ion. . . . . . 50
6.12 Pa ien calenda (a) View o he pa ien calenda . Can check scheduled e en s and
add new e en s. He e he use should indica e he ype o e en , day, hou and
desc ip ion o add. (b) The ac i i y diag am o he p esen sec ion. . . . . . . . . 51
6.13 (a) Pa ien e en s dia y. He e he pa ien can see numbe o uploaded e en s, by
ype. Mo eo e , he use can in e ac wi h he ho izon al imeline, see some in o -
ma ion ela ed o each e en , and by clicking access he mo e de ailed desc ip ion
o ha e en in he e ical imeline. (b) The e ical imeline gi es he use he
chance o u he analyze he e en s inse ed by he pa ien . (c) The ac i i y dia-
g am o hep esen sec ion. ............................ 52
6.14 Pa ien Galle y (a) The use has access o all ideos uploaded by pa ien s and by
he medical s a . I he use wishes o educed he numbe o a ailable ideos he
can selec a pa ien . By clicking one o he links he use is edi ec o he ideo’s
page.(b) The ac i i y diag am o he p esen sec ion. . . . . . . . . . . . . . . . 53
6.15 Video De ails (a) He e he use can ead all he in o ma ion ela i ely o he chosen
ideo as well as play he ideo. (b) The ac i i y diag am o he p esen sec ion. . 54
6.16 Video Compa ison (a) The use can selec on he op o he page a ideo o com-
pa e wi h om se e al a ailable. The ideos a e o de ed acco ding o he da e
o upload. Below he ideos he esul s o he p e ious web o ms aken (b) The
ac i i y diag am o he p esen sec ion. . . . . . . . . . . . . . . . . . . . . . . 54
6.17 Se e al iews o he mobile ideo app. (a) The on page o he app whe e he
use can inse he pa ien ’s name he desi es o eco d. (b) Video galle y whe e he
use can see any p e ious eco ded ideos o eco d a new one. (c) View o he
eco ding ideopage ................................ 55
C.1 Illus a ion o he able o impo an e en s, ela ed o PD, used du ing appoin -
men s a HSJ and o be illed by pa ien s. . . . . . . . . . . . . . . . . . . . . . . 81
2In oduc ion
physicians need o ha e o diagnosis, ea men and moni o ing o his illness (17). As e e ed
abo e, Telemedicine is he ield ha is showing g ea in e es in his disease, mainly in he in es-
iga ion and de elopmen o new moni o ing solu ions ha can aid doc o s in pe o ming a mo e
quali ied ollow-up o pa ien s, hus allowing o a be e diagnosis and consequen ly a mo e e i-
cien ea men (18). As consequence o his, Telemedicine was ecen ly ecognized as one o he
key echnologies o be e heal hca e p o ision in he Eu opean Commission Plan o Ac ion o
Elec onic Heal h 2012-2020 (19).
Technology is now a ailable o all; anyone has easy access o he In e ne ei he h ough a
compu e , SP, able o simila . Nowadays, i is easy o speak in pe son wi h someone on he o he
side o he wo ld i you ha e a webcam which is usually inco po a ed wi hin one o he p e iously
men ioned de ices. Bea ing his in mind, wi h his ype o echnologies a ailable, a lo can be done
o hose in need o be e heal hca e se ices. I is ou du y, as biomedical enginee s, o collabo a e
wi h physicians om a ious ields o Medicine, in o de o de elop ingenious solu ions ha a e
able o imp o e diagnosis, ea men , moni o ing and in he end pa ien ’s QoL. Ou ole is o ind
he solu ion o a p oblem and con inually imp o e such solu ion because wi h an answe a ises
ano he ques ion. By always being ascina ed wi h Medicine and no being able o s op enjoying
he in ini e loop which is enginee ing I chose such an inspi ing a ea – Telemedicine - o wo k on.
1.2 Objec i es
In his disse a ion i is p esen ed he design and de elopmen o a mul imedia pla o m o allow
o a be e PD emo e home moni o ing h ough an easy accessible, highly usable, and in eg a ed
sys em on use ’s daily li ing. Such solu ion is expec ed o empowe physicians wi h a be e
knowledge o pa ien ’s well being, capabili ies and di icul ies and hus allowing hem o wo k
on he diagnosis and ea men based on a mo e iche and consis en in o ma ion han cu en ly
a ailable. Fu he mo e, i is he au ho ’s belie ha such wo k goes owa ds he Eu opean Com-
mission’s inci emen o apply In o ma ion and Communica ion Technologies (ICT) o heal hca e
sys ems so o imp o e hei e iciency, imp o e quali y o li e and unlock inno a ion in heal h
ma ke s (19), p omo ing a close in ol emen o end use s in he design p ocesses (20).
1.3 Resul ed Publica ions
The p esen hesis esul ed in he ollowing publica ions:
Diogo Menezes Bo ges, João Paulo Sil a Cunha. Telemedicine mul imedia sys em o sup-
po Neu odegene a i e diseases pa icipa o y managemen . In 37 h Annual In e na ional IEEE
EMBS Con e ence. Milan, I aly, 2015. - Accep ed o Publica ion (see Appendix Gand H).
Diogo Menezes Bo ges, João Paulo Sil a Cunha. Telemedicine mul imedia sys em o sup-
po Neu odegene a i e diseases pa icipa o y managemen . In 1s Doc o al Cong ess in Engi-
nee ing FEUP. Po o, Po ugal, 2015. (see Appendix F)

1.4 S uc u e 3
1.4 S uc u e
Besides he cu en in oduc ion, his disse a ion di ides in o 6 mo e chap e s. In chap e 2a
gene al o e iew o PD, based on di e en s ands o he disease, is made. Fu he mo e, chap e 3
alks abou Telemedicine in ol emen wi h PD and ecen echnological p oposals o he moni-
o ing o his illness. Chap e 4illus a es he cu en si ua ion in he moni o ing o PD pa ien s in
Hospi al São João (HSJ) and some ela ed issues. Mo eo e , chap e 5add esses he design and
a chi ec u e o he p oposed solu ion whe eas chap e 6illus a es he p o o ype and he alida ion
o he p oposed sys em and las ly, in chap e 7some conclusions a e p esen ed and u u e wo k is
sugges ed.
Pa I
S a e o he A
5
Chap e 2
Pa kinson’s Disease
PD, i s ly desc ibed by James Pa kinson in 1817 (21), is a ch onic p og essi e neu odegene a i e
diso de and he second mos common a e Alzheime ’s disease (22). This illness displays a
highe p opensi y o people o e 60 yea s al hough he e a e also a e cases o younge people
unde he age o 40 yea s (23). Due o he popula ion as aging, PD has become a apidly g owing
a ea o conce n. The pa hological hallma k o PD is he p og essi e loss o dopamine-p oducing
neu ons in he egion o he b ain ha con ols mo emen s: he subs an ia nig a (22;24;25).
Consequen ly, wi h he disease’s p og essi e de elopmen , he loss o dopamine gic neu ons
sp eads o almos he whole cen al ne ous sys em (23) leading o heal h de e io a ion and con-
side ably impai o he pa ien ’s QoL. By he ime o dea h, someone who su e ed om PD may
show less 50-70% dopamine-p oducing cells han a una ec ed indi idual (24).
2.1 Clinical Fea u es
PD is usually associa ed wi h he loss o capabili y o pe o m no mal olun a y mo emen s (i.e.
mo emen diso de ), al hough pa ien s can also expe ience cogni i e impai men and emo ional/-
mood dis u bances (23). PD’s symp oms can be di ided in o wo majo g oups: Mo o symp-
oms and Non-mo o symp oms ( able 2.1). PD has ou ca dinal ea u es: b adykinesia, igidi y,
pos u al ins abili y and es emo (23;24;7), alling all unde he mo o symp oms ca ego y.
These mo emen diso de s ha e a subs an ial nega i e impac in he, un il hen, pa ien ’s abili y
o pe o m no mal e e yday ac i i ies. Addi ionally, non-mo o symp oms end o appea wi h he
de elopmen o he disease. Cu en ly he e a e no de ini i e biological o imaging ma ke s (such
as blood es , b ain scan o an elec oencephalog am (EEG)) o make a de ini i e PD diagnosis; a
leas one ha he scien i ic and medical communi y bo h suppo (14). Ne e heless, as an al e -
na i e, a specialized physician in PD can ake a ca e ul medical his o y and pe o m a ho ough
neu ological exam sea ching o he disease’s ca dinal symp oms (26). The Uni ied Pa kinson’s
Disease Ra ing Scale (UPDRS), o iginally in oduced in 1987 (27), is a he momen he mos
used clinical me ic o quan i y PD impai men wi h he esul s alling wi hin 0 and 199, whe e 0
indica es a heal hy subjec and 199 one wi h o al disabili y (28;27). I consis s o 42 i ems sub-
7

8Pa kinson’s Disease
di ided in o ou main domains: (1) Beha io , mood and psychological s a e; (2) Daily Rou ine
ac i i ies; (3) Mo o , ega ding muscle con ol and (4) The apy ela ed complica ions, ha ing each
sec ion a inal sco e (27). Appendix Aillus a es an example o a UPDRS exam.
The hi d domain, also known as UPDRS-mo o , is e alua ed a e e y medical appoin men
h ough pa ien ’s pe o mance o mo o asks, p esen ing he highes in luence in he inal UPDRS
sco e. Likewise, he second domain has a g ea impac al hough i depends on pa ien ’s capabili y
o ecall hei abili y o ul ill ce ain ac i i ies o daily li ing o e long pe iods o ime and, in
addi ion, pa ien ’s in e p e a ion o hei symp oms is no always accu a e wi h he eali y (29).
Consequen ly, he in o ma ion e ie ed a e e y medical appoin men is no a comple e ep esen-
a ion o pa ien ’s e e yday li ing. Thus, he e is s ill a lack o in o ma ion on PD pa ien s when
hey a e in a home en i onmen which makes a g ea challenge o physicians o, i s ly, unde s and
pe sonalized issues ha may occu o he pa ien on a daily basis and, secondly, make lawless de-
cisions on he apeu ic o medica ion in e en ions (30). A cons an acking and quan i ica ion o
some o PD clinical ea u es is highly impo an since i will allow o a be e comp ehension o
he ea men ’s e iciency gi ing he physicians he signi ican in o ma ion ha , coupled wi h he
medical knowledge, can gi e he pa ien he bes ea men possible.
Table 2.1: Pa kinson’s disease mo o and non-mo o symp oms (Adap ed om (7)).
MOTOR SYMPTOMS NON-MOTOR SYMPTOMS
T emo , b adykinesia, igidi y, pos u al ins a-
bili y
Cogni i e impai men , b adyph enia, ip-o -
he- ongue (wo d inding) phenomenon
Hypomimia, dysa h ia, dysphagia, sialo -
hoea
Dep ession, apa hy, anhedonia, a igue, o he
beha iou al and psychia ic p oblems
Dec eased a m swing, shu ling gai , es ina-
ion, di icul y a ising om chai , u ning in
bed
Senso y symp oms: anosmia, ageusia, pain
(shoulde , back), pa es hesias
Mic og aphia, cu ing ood, eeding, hygiene,
slow ac i i ies o daily li ing
Dysau onomia (o hos a ic hypo ension, con-
s ipa ion, u ina y and sexual dys unc ion, ab-
no mal swea ing, sebo hoea),weigh loss
Glabella e lex, blepha ospasm, dys onia,
s ia al de o mi y, scoliosis, camp oco mia
Sleep diso de s (Rapid Eye Mo emen (REM)
beha io diso de , i id d eams, day ime
d owsiness, sleep agmen a ion, es less legs
synd ome)
2.2 Moni o ing
PD moni o ing can be ei he passi e o ac i e. The i s is based on a collec ion o da a wi hou
he need o in e up he pa ien ’s ou ine. Thus, pa ien s can be moni o ed wi hou e en no icing,
a oiding si ua ions o s ess ha may a ec he esul s. In con as , he la e e m equi es he
pa ien o in e ac wi h, o example, a compu e o a mobile sc een o con ex ual da a collec ion
(e.g. speech, acial emo , medica ion in ake, mood, pain and so o h). On he con a y o passi e
2.3 T ea men 9
moni o ing, ac i e moni o ing makes pa ien s mo e ac i e in hei heal h’s managemen allowing
hem o be mo e awa e o he disease and i s de elopmen (30).
2.3 T ea men
Once a pe son is diagnosed wi h PD he pa h ahead is long and ha sh, o bo h he pa ien and
he amily. Al hough he e is s ill no cu e possible he e a e ea men s a ailable, which should be
s a ed as soon he diagnosis is made since hey help o educe, wi h g ea success, PD symp oms.
2.3.1 Dopamine Replacemen
The i s line o de ense, and he cu en he apy used, is he augmen a ion o eplacemen o
dopamine, using le odopa (a biosyn he ic p ecu so ) o d ugs ha ac i a e dopamine ecep o s
(31). These he apies a e success ul in signi ican ly diminishing he se e i y o PD mo emen
symp oms. A he beginning o he disease, mo o disabili y may no be e y signi ican as symp-
oms a e usually unila e al and mild (8). Howe e a e a ce ain pe iod o ime (4-6 yea s (32))
he d ug e iciency d ops and side e ec s such as in olun a y mo emen s (dyskinesia) and/o med-
ically e ac o y luc ua ions may occu (9;25). In he la e s ages o he illness he pa ien has
al eady los his au onomy and he need o assis ance o mos ac i i ies o daily li ing (e.g. d ess-
ing, pe sonal hygiene, eeding, walking, e c.) will inc ease (23;7).
2.3.2 Deep B ain S imula ion
The disco e y o high- equency s imula ion in 1987 has enabled neu osu geons o s imula e spe-
ci ic a ge s (33). Basically, elec odes o neu os imula o s a e implan ed inside he b ain s im-
ula ing he sub halamic nucleus (STN), which is in ol ed in mo o con ol (34). This p ocedu e
is known as Deep B ain S imula ion (DBS) su ge y. The i s PD pa ien s o ecei e his high-
equency s imula ion (HFS) in 1993 (35;36), showed, a e su ge y, a signi ican ly imp o emen
in emo , igidi y and b adykinesia allowing o a educ ion o abou 60% in he p esc ibed le -
odopa and, consequen ly, diminishing he le odopa-induced mo o luc ua ions and dyskinesia
(37). Un il now his p ocedu e has been used in se e al housands PD pa ien s, all o e he wo ld,
making i a wo ldwide e e ence p ocedu e o ad anced PD (33).
2.3.3 Demanded In as uc u es and Human Resou ces
A pa ien su e ing om PD goes h ough di e en s ages wi h di e en needs co esponding o
each s age, which makes he equi emen o in as uc u e and human esou ces al e acco dingly
o he s age he pa ien is in (8). As one can obse e, in able 2.2 a se o PD e ec s ( igh column),
pe disease s age, and he co esponding heal h sys em equi emen s (le column) a e p esen ed.
Addi ionally, he cos o hese measu es is qui e high and he need o specialized pe sonnel,
in as uc u e and equipmen is signi ican (8). Though he numbe o ci izens equi ing hese
10 Pa kinson’s Disease
p ocedu es is s ill small, a highe demand in he u u e due o popula ion’s aging is expec ed
unless a cu e is ob ained.
Table 2.2: Pa kinson’s Disease heal h sys em equi emen s h ough he disease’s di e en s ages
(Adap ed om (8)).
Ea ly S age
Pe iodic medical con ols. Ou pa ien clinic,
may be managed by non-specialis . T ea men
equi emen s simple.
P ese ed au onomy and independence. May
e ain job.
In e media e S age
Mo e equen medical con ol equi ed. May
need specialized ca e. T ea men equi e-
men s mo e complex (physical and speech
he apy, in some cases su ge y).
Mo o impai men and disabili y mo e e i-
den . Mo o complica ions ( luc ua ions and
dyskinesias).
Ad anced S age
May equi e hospi al admissions and pa ic-
ipa ion o o he medical special ies (u olo-
gis clinician, gas oen e ologis , o hopaedis ,
psychia is , specialized nu ses, social wo k-
e s). May equi e PD su ge y.
Mo e p onounced mo o complica ions, non-
mo o complica ions (u ina y, au onomic,
cogni i e impai men , alls). Deglu i ion dis-
o de s.
Final S age o he Disease
Ins i u ionaliza ion as a las eso . Majo disabili y, pa ien may become bed id-
den o need signi ican deg ee o assis ance
( eeding ube, gas os omy).
2.3.4 Rela ed Cos s
Acco ding o (38), PD is he ou h mos cos ly neu ological disease a e mig aine, s oke and
epilepsy. Fu he mo e, in 2011, an in e na ional s udy o PD ac oss Eu opean coun ies showed
ha his disease has a conside able economic bu den on Eu opean popula ions (1). An analysis
o PD cos s was made o six coun ies: Aus ia, Czech Republic, Ge many, I aly, Russia and
Po ugal. On a e age, 31% o 52% o pa ien s needed help wi h daily li ing ac i i ies and 76% o
96% o hose pa ien s we e aken ca e by amily membe s o olun ee s (1).
In able 2.3, a cos o illness and ca e in PD, om a socie al pe spec i e, pe pa ien o e a
6-mon h obse a ion pe iod is p esen ed. These cos s a e di ided in o wo g oups: di ec cos s
and indi ec cos s. The i s one is ela ed o inpa ien ca e (hospi al and ehabili a ion cos s),
ou pa ien ca e (cos pe isi o he physician), p esc ip ion d ugs, ca e (gi en by p o essional se -
ices o amily membe s), pa ien co-paymen s (PD- ela ed expenses documen ed by pa ien s) and
special equipmen while he la e is linked o p oduc i i y loss (sick lea e/ea ly e i emen ). As
one can obse e, Eas e n Eu opean coun ies (Russia and Czech Republic) show lowe expenses
when compa ed wi h Wes e n Eu opean coun ies. Wi h he excep ion o Po ugal, hese we e he
expec ed esul s. Mo eo e , di ec cos s eimbu semen s by he Na ional Heal h Insu ance (NHI)
we e lowe in Eas e n Eu ope (49% o Czech Republic and 47% o Russia) whe eas in Wes e n
2.3 T ea men 11
Eu ope he eimbu semen s a es we e wi hin 59%-89%. In addi ion, as he disease se e i y in-
c eases, so does he cos o all coun ies, again wi h excep ion o Po ugal, whe e cos s in highe
disease s ages dec ease ( igu e 2.1).
Table 2.3: A e age cos o illness and ca e in PD om a socie al pe spec i e pe pa ien o e a
6-mon h obse a ion pe iod.(Adap ed om (1)).
Cos (Eu os) Czech Republic Aus ia Po ugal Ge many I aly Russia
Di ec 3306
(60%)
5892
(60%)
2070
(69%)
6027
(70%)
5838
(70%)
1755.4
(67%)
Indi ec 2204 3928 930 2583 2502 864.6
To al 5510 9820 3000 8610 8340 2620
Figu e 2.1: To al Cos s s a i ied by disease s age and coun y. The g een colo ep esen s he i s
s age o he disease while he g ay colo indica es he las s age o PD. (Adap ed om (1)).
2.3.5 P e alence and Incidence
Cu en ly in he Uni ed S a es o Ame ica (USA) mo e han 40% o people wi h ages o e 65 and
diagnosed wi h PD, do no see a neu ologis and he e o e ha e a highe p obabili y o inju y
o dea h (13). Likewise, in Eu ope he clinical appoin men s’s a endance by PD pa ien s is a
om being he desi able. Fo example, in Po ugal he a e age numbe o isi s o a neu ologis
pe pe son in six mon hs is less han one while o he gene al p ac i ione (GP), in he same
pe iod o ime, he a e age is less han hal a isi , as shown in igu e 2.2 (1). This di e ence,
ac oss coun ies, in he numbe o consul a ions pe capi a, can be due o cul u al ac o s o due o
di e ences in co-paymen s and physician densi y. Fo example, in Boli ia, a de eloping coun y,
a doo - o-doo p e alence s udy has shown ha none o he indi iduals diagnosed wi h PD ha e
sough o e en ecei ed medical ca e o hei condi ion (11). Popula ion is aging as , mainly in
weal hy coun ies, and consequen ly he economic bu den o PD inc eases as well. The si ua ion
only de e io a es when analyzing he es ima ions o PD pa ien s in 2030. As shown in igu e 2.3
he numbe o indi iduals diagnosed wi h PD was o app oxima ely 4 million in 2005 and ha
numbe is expec o double by 2030 (2). This scena io becomes mo e ala ming when you ake
18 Telemedicine: Moni o Pa kinsonism
Figu e 3.4: (a) Medica ion main menu (b) Add in ake (c) Medica ion eminde (d) Pop-up o
MyDa a (e) MyDa a main sc een ( ) MyDay (adap ed om (6)).

Chap e 4
Case S udy Hospi al São João
Hospi al São João (HSJ) in Po o, besides being one o he majo hospi als in Po ugal (a ound
1000 beds), is a pionee and leade in PD diagnosis and ea men , he e o e dealing wi h pa-
ien s om e e y egion o Po ugal. The p o ocol es ablished in HSJ de ines ha once a pa ien
is submi ed o a DBS su ge y (ad anced s age o PD) and discha ged, he is expec ed o mee
his physician in he 1s , 3 d and 6 h mon h a e su ge y and hen e e y 6 mon hs. Pa ien s om
and nea by he dis ic o Po o a e usually seen he i s mon h a e being discha ged whe eas
pa ien s ou side his dis ic (mo e han 100 Km) a e only e alua ed 3 mon hs la e (53). In hose
appoin men s he UPDRS scale is used o e alua e he impai men caused by he disease. Ac-
co ding o he pa ien ’s answe s o he UPDRS exam and wi h he clinician’s obse a ion o he
pa ien ’s speech, mo o capabili ies, humo and o he s, he e can be a medica ion adjus men , cal-
ib a ion and egula ion o elec odes equency, among o he s. The e e ed pa e n is p esen ed in
able 4.1.
Table 4.1: Appoin men p o ocol used o moni o ing PD pa ien s who ha e unde gone DBS
su ge y a HSJ. Pa ien s whose esidence is ou side he dis ic o Po o, only s a a ending hese
appoin men s 3 mon hs a e su ge y.
Appoin men s a e su ge y
1 mon h
3 mon hs
6 mon hs
E e y 6 o 12 mon hs
4.1 Nu se Call Cen e
Acco ding o he case s udy p esen ed in sec ion 2.3.4, in a e age, a PD Po uguese pa ien only
a ends a neu ology appoin men a single ime 6 mon hs a e su ge y. Such a low numbe can be
jus i ied by se e al easons, anging om: he physician’s igh schedule, pa ien ’s mo o di icul-
ies o e en pa ien ’s esidence being oo a om he hospi al and hus hey migh be comple ely
dependen on long dis ance public anspo a ion o e en amily membe s, o a end a consul a ion.
19
20 Case S udy Hospi al São João
Thus ele an in o ma ion in espec o he mon hs p eceding he consul a ion should be gi en in
e e y appoin men . The main conce n is based on he ac he pa ien has o summa ize 6 mon hs
o li ing daily wi h he disease, i.e., e e ence impo an e en s ela ed o PD ha migh be o help
o he physician’s diagnosis. Howe e , his ask is based on pa ien ’s capabili y o ecall his well
being in he pas , which can be di icul o someone wi h a declining age and in an ad anced
s age o PD. Besides his ac , i is also dependen on he co ec in e p e a ion and desc ip ion o
his symp oms al hough as desc ibed p e iously PD pa ien s end o misin e p e hei symp oms.
The e o e, physicians can only wo k on a diagnosis and ea men based on his poo de ailed
in o ma ion plus wha hey isually assess du ing he appoin men . Fu he mo e, pa ien ’s s a e
du ing he appoin men is a mi o o he disease’s impai men in ha speci ic day o week no gi -
ing any indica ion o p e ious weeks and mon hs. Mo eo e , he pa ien can always be nega i ely
in luenced by a igue and s ess.
E go, in o de o y o sol e hese issues besides he men ioned appoin men p o ocol, HSJ has
c ea ed a call cen e sys em, managed by he nu ses, o he same g oup o PD pa ien s men ioned
abo e. This call cen e wo ks as a complemen o he appoin men ’s p o ocol, wi h nu se/pa ien
in e ac ion occu ing in he mon hs be o e he scheduled appoin men s. A e being submi ed
o DBS su ge y pa ien s go h ough a eco e y pe iod in he hospi al being mainly accompanied
and ea ed by nu ses. Du ing his pe iod pa ien s a e encou aged o pe o m daily li ing asks
such as d essing, b ushing hei ee h, u ning in bed by hemsel es, e c, so ha when in a home
en i onmen hey can con inue o be au onomous. Hence, his call cen e has he goal o ob aining
in o ma ion on how he pa ien ’s daily li ing has been since discha ge and i he e has been any
al e a ion in hei QoL. In his way, mo e in o ma ion is e ie ed on impo an e en s ela ed o
PD ha a ec ed a ce ain pa ien QoL besides ha ob ained in he hospi al appoin men s. This
addi ional measu e o moni o HSJ’s PD pa ien s ocus on a phone call and a some guidelines
(Appendix B). The i s phone call happens 72h a e he pa ien has been discha ged; hen 15 days
la e , 1 mon h, 3 mon hs and hen e e y 6 mon hs.
4.1.1 Addi ional appoin men s
The ac i i y diag am p esen ed in igu e 4.1 illus a es how he call cen e p esen ly wo ks a HSJ.
Fi s , he nu se checks which pa ien is scheduled o call nex . I he pa ien answe s he phone,
hen he nu se should ollow he p o ided guideline (Appendix B). This guideline app oaches di -
e en opics such as medica ion, dyskinesia, OFF pe iods, speech, physio he apy and sel -ca e.
Ne e heless, he ques ionnai e is a bi sca ce in e ms o in o ma ion. Fo example, ques ions e-
la ed o dyskinesia only add ess i he e we e episodes and i yes i hey we e disabling. Howe e ,
i does no conside he e en du a ion, how many imes occu ed in one day o a week, ime o day
in which hey occu mo e, le el o disabili y imposed, among o he s. Simila ly, he ques ions e-
la ed o OFF pe iods only app oach i he e was any and i he pa ien had hem be o e he su ge y
and i , a e being submi ed o DBS su ge y, he e was any imp o emen . Again, i does no con-
side e en du a ion, pe iod o occu ence, unde which ci cums ances, e c. Fu he mo e he nu se
does no isually obse e he pa ien , hus a desc ip ion o cu en mo o ela ed symp oms is ha d
4.2 Objec i e 21
o e alua e since he e is always a high p obabili y o an e oneous judgmen made by he pa ien
on his cu en symp oms.
Consequen ly, case he pa ien ’s es imonial desc ibes a si ua ion whe e he QoL is low hen
he nu se can con ac he physician esponsible and oge he decide he mos accu a e solu ion.
The physician migh sugges egula ing he dose o medica ion o , in case he o me ceases o
be a alid solu ion, schedule an addi ional appoin men so ha he can do a ho ough e alua ion
leading o, in a g ea numbe o cases, a pa ien ha ing mo e appoin men s han hose needed
( able 4.1). The pa ien is in o med o he decision and he nu se e mina es he phone call.
Figu e 4.1: Ac i i y diag am o he cu en p ac ice exis en in HSJ nu se call cen e .
4.2 Objec i e
As p e iously men ioned due o pa ien ’s misin e p e a ion o hei symp oms, a g ea numbe o
addi ional appoin men s a e scheduled in o de o be e unde s and hei desc ibed s a e and how
can he physician imp o e pa ien ’s QoL. Fo pa ien s li ing in he dis ic o Po o, hose addi-
ional appoin men s should no cause g ea incon enience since he ime and cos o he jou ney
a e bea able. Howe e o pa ien s whose esidence is mo e han 100km a om he hospi al he
scena io can be a bi mo e complica ed.
In o de o comp ehend he cos and du a ion hese la e pa ien s ha e o bea o a end an
appoin men a HSJ and, in addi ion, he impac hose ac o s would ha e on hei physical and
psychological s a e a e ospec i e s udy was done. Fu he mo e, analysis o he numbe pa ien s
who had o schedule addi ional appoin men s de i ed om a decision made, by he nu se and
doc o , when in con ac wi h he pa ien h ough he nu se call cen e was o g ea in e es .
22 Case S udy Hospi al São João
4.3 Me hodology
To de e mine he a e age cos and ime a PD pa ien (wi h esidence ou side o Po o) spends in
an appoin men a HSJ a o al o 168 cases o PD pa ien s, who we e submi ed o DBS su ge y
be ween 2001 and 2014, we e conside ed. F om his se o pa ien s, only hose whose i s su ge y
was be ween 2009 and 2014, was no diagnosed wi h ano he ch onic disease o had his o y o
pos -su ge y in ec ion, and whose esidence was a a dis ance highe han 100 Km om he HSJ
we e selec ed. In he end, he e was a o al o 25 pa ien s ha ing all had a leas 5 o he expec ed
pa e n consul a ions and whe e 73% we e unde 60 yea s and 73% we e males. Fo all he ep-
esen ed dis ic s in igu e 4.2 (Viseu, Gua da, Cas elo B anco, Fa o, Funchal, Po aleg e, Lei ia,
San a ém, Coimb a, Co ilhã) he jou ney’s cos s ( o h and back) o anspo a ion o Po o (ei-
he by Bus, ain and ca ) we e calcula ed. Calcula ions we e made using an online ca a el
calcula o , o make an es ima ion o ca expenses, and icke p ices a ailable online a ailway and
bus websi es.
Figu e 4.2: Rep esen a ion o all dis ic s o esidence om all he selec ed 25 pa ien s and Po o.
4.4 Resul s
F om he sample g oup 72% o pa ien s, a e alking wi h he nu se a he call cen e , had addi-
ional appoin men s scheduled. Fu he mo e, knowing he ci y o esidence o each indi idual he
p ice and du a ion o a jou ney o HSJ was calcula ed. All calcula ed alues, o di e en jou neys,
a e ep esen ed in he Appendix D. As he dis ance om HSJ inc eases so does he jou ney’s ime
and cos . The e a e wo dis ic s, Viseu and Po aleg e, which do no ha e ain s a ions and hus
he a e age p ice and ip du a ion we e no calcula ed.
4.5 Conclusions and p oposed me hodology 23
In he end, i was possible o de e mine ha , o e e y jou ney o he hospi al and back home,
a pa ien can expec anspo a ion expenses anging om 21 Eu os o 190 Eu os, jou ney du a ion
anging om 6h o 16h. Fu he mo e, acco ding o D . Ma ia José Rosas, expe ienced neu ologis
in HSJ, e e y appoin men has an a e age du a ion o 1 o 3 hou s and consequen ly he wai ing
ime o he pa ien is, in a e age, 3 hou s. All hose cos s, only accoun o public o p i a e ans-
po a ion, wi hou conside ing a possible need o s ay in a ho el ( o a end an ea ly appoin men
o he lack o anspo a ion home), he need o miss a leas a day o wo k, meals, among o h-
e s. Fu he mo e, acco ding o he doc o , hese long jou neys impose g ea s ess and a igue in
pa ien s, a ec ing hei mood and consequen ly he mo o pe o mance and memo y capabili ies
du ing he appoin men and hus ha ing a c i ical impac on hei ea men . Table 4.2 indica es
he minimum, maximum, a e age cos and du a ion pa ien s should expec .
Table 4.2: Jou ney’s cos and du a ion (minimum,maximum and a e age) ela ed o PD pa ien s
submi ed o DBS su ge y a HSJ and whose esidence is mo e han 100km om he hospi al.
Mo eo e , du a ion ime o wai ing and appoin men a e p esen ed.
Min. Median Max. A g.
Jou ney Cos (eu os) 21.3 52.7 190.3 59.65
Jou ney Du a ion(hou s) 2.8 6.7 16.5 7.24
Wai ing ime hospi al(hou s) 3
Appoin men du a ion (hou s) 1-3
4.5 Conclusions and p oposed me hodology
As p e iously e e ed, HSJ deals wi h PD pa ien s om e e y egion o Po ugal. Pa ien s su e -
ing om his illness a end o HSJ o he DBS su ge y because hey a e ecommended by hei
p e ious physicians om hei local hospi al o heal hca e cen e . Howe e , in o de o ob ain
he bes ea men a ailable he pa ien migh ha e o make some economic, physical and psycho-
logical sac i ices. Jou ney’s cos , du a ion and he a e age wai ing ime can cause s ess, a igue
and dis ac ion on he pa ien which will ha e a nega i e impac du ing his appoin men , mainly
on his abili y o ecall and desc ibe his daily li ing and on his pe o mance on he UPDRS-mo o
assessmen . Usually, in o ma ion on pa ien ’s well being on a daily basis a e only e ie ed in each
appoin men , whe e he pa ien is expec ed o make a gene al o e iew o his li e o e he pas ew
mon h, physical and psychologically, since he and he physician las spoken. HSJ ies o make up
o his disad an age h ough he nu se call cen e . Al hough, mo e in o ma ion is e ie ed om
he pa ien p e ious o he appoin men s, he u h is a g ea numbe o imes he pa ien ’s subjec-
i e desc ip ion o his symp oms (mo o and non-mo o ) is no always accu a e wi h he eali y
and i ends up wi h pa ien s ha ing o a end he hospi al mo e imes han needed.
The e o e, he e is a high demand o sys em ha allow o a success ul and e o less acking
o PD p og ession when pa ien s a e a home. Physicians ask o solu ions ha allow hem o
objec i ely and isually assess he pa ien in a home en i onmen .The HSJ medical s a is mainly

24 Case S udy Hospi al São João
in e es ed in mo o PD ea u es, ega ding mo o con ol and pa ien ’s capabili y o pe o m daily
ou ine ac i i ies. Hope ully, wi h mo e in o ma ion o he days, weeks o mon hs p eceding he
appoin men he physician will be able o be mo e accu a e on his diagnosis and consequen ly and
he pa ien ’s ea men , hus imp o ing pa ien ’s QoL. Fu he mo e, due o his ac i is expec ed
a educ ion in he need o ex a appoin men s.
Pa II
Telemedicine mul imedia sys ems o
suppo Neu odegene a i e diseases
pa icipa o y managemen
25
Chap e 5
Design o he p oposed sys em
The goal o his p ojec is o de elop a pe sonal heal h sys em wi h a closed in e ac ion be ween
PD pa ien s, who ha e unde gone DBS su ge y a HSJ, and hei medical s a . Fo he p oposed
sys em he au ho oge he wi h a eam o 2 nu ses and 1 doc o om HSJ, discussed he demanded
equi emen s o he wo ac o s who a e expec ed o in e ac wi h he pla o m: PD pa ien s and
medical s a . The HSJ medical s a is mainly in e es ed in mo o PD ea u es, ega ding mo o
con ol and pa ien ’s capabili y o pe o m daily ou ine ac i i ies.
F om he poin o iew o he pa ien his pla o m will ul ill wo basic equi emen s: al-
low hem o gi e mo e accu a e, objec i e and cons an in o ma ion on hei daily li ing ac i -
i ies (di icul ies and accomplishmen s) and QoL, imp o e he cu en means o communica ion
while enhancing he quali y o in e ac ion be ween bo h sides and, in he o e all, will gi e hem
a sense o g ea e con ol o hei illness’ de elopmen since hey will play a mo e ac i e ole on
i s managemen . On he o he hand, om he medical s a pe spec i e he pa ien ’s daily li ing
in o ma ion will a i e s a is ically p ocessed and objec i ely p esen ed. In addi ion, pa ien ’s mo-
o capabili ies and disabili ies analysis, in a home en i onmen , will be possible h ough ideo
sou ce enabling he medical s a o isually access pa ien ’s well-being and allow o ea men
imp o emen , hus enabling educ ion o ex a appoin men s scheduled. The e o e, in he p esen
chap e he s uc u e o he p oposed web pla o m, known as Moni o ing Pa kinson’s (MoPA),
will be desc ibed.
5.1 Sys em Requi emen s
As p e iously desc ibed, he e a e some issues ela ed wi h he da a e ie ed ela i ely o pa ien ’s
well being when hey a e in hei home en i onmen . The e o e, he goal o he MoPA sys em is o
p esen solu ions o imp o e he communica ion and in o ma ion exchanged be ween he hospi al
medical s a and PD pa ien s.
Hence wo ac o s will use he MoPA pla o m as a mean o in e ac ion, being hose he pa ien
and medical s a . Al hough he de eloped da abase has an impo an ole o play in he sys em,
he ac i is in eg a ed as an in e nal pa o his pla o m (use s only in e ac wi h i h ough he
27
34 Design o he p oposed sys em
Figu e 5.6: Rep esen a ion o sec ions om he MoPA pla o m wi h which use s will in e ac
wi h. (a) Rep esen a ion o he login page. (b) Pa ien Web pla o m dashboa d page. He e he
pa ien has links o i e di e en sec ions o he pla o m. (c) Sel -assessmen dia y, whe e pa ien
can add desc ip ion o disease’s ele an e en s.(d) Web o m ela ed o a sel -e alua ion o he
ac i i ies o daily li e.
5.3.2 Hospi al Wo k low
The medical s a is i s ly exposed o he same login page as he pa ien be o e ha ing access o
he hospi al web pla o m. Once again, case he inse ed use name and passwo d a e accep ed,
hen he use is edi ec ed o he espec i e dashboa d. On con a y o he p e ious pla o m, he e
he use has six sec ions o in e ac wi h and he links o hose sec ions a e disposed in a side
ba . Those six sec ions a e Pa ien sel -assessmen Dia y, Calenda , Web o m’s cha s, Cha ,Video
Galle y and Pa ien Medical Reco d. The goal o his pla o m is o p esen he use all he in o -
ma ion uploaded by pa ien s in a mo e p ocessed and summa ized manne . Simila ly, a summa-
ized desc ip ion o usage, pe sec ion, is al eady illus a ed in igu e 5.7 al hough a mo e de ailed
desc ip ion o he ea u es he use can in e ac wi h will be gi en nex .
•Pa ien Sel -assessmen Dia y
In his sec ion medical s a can isualize he in o ma ion uploaded by pa ien s con-
ce ning di e en e en s o ele ance o he managemen o PD. The use will be able o
selec one o se e al pa ien s om he da abase and access all ela ed in o ma ion o impo -
an e en s such as sleep, dyskinesia and ON and OFF pe iods. The du a ion o he e en s,
he pe iod o he day whe e i occu s and e en ’s desc ip ion made by he pa ien will be

5.3 P oposed solu ion 35
Figu e 5.7: P oposed wo k low diag am o MoPA Medical S a Web Pla o m.
a ailable as well as s a is ics o which e en s end o occu mo e o en and when. Figu e 5.8
(c) illus a es well how he in o ma ion can be shown o he use .
•Calenda
He e he use will be able o add, edi o emo e e en s om his own calenda . Fu -
he mo e, he use can access pa ien ’s calenda and add, edi o emo e any e en ela ed o
he disease’s managemen such as appoin men s, scheduling o answe web o m o upload
ideo. All e en s ela ed o pa ien ’s pe sonal li e can no be seen, edi ed o dele ed. The
use will only know he pa ien has an e en o ha day.
•Web o m’s Cha s
As p e iously e e ed, in e e y web o m aken, i will be gi en o he use pa ien a
inal sco e. The e o e, he medical s a will be capable o isualize he sco e pe da e o
each web o m aken, as illus a ed in igu e 5.8 (d) and i desi ed see in mo e de ailed he
op ions chosen by he pa ien in each da e.
•Cha
In his sec ion he medical s a will be capable o answe any doub s o conce ns aised
by he pa ien , and i needed s a a ideocon e ence ( igu e 5.8 (a)) wi h he pa ien so o
isually obse e him and be e analyze his symp oms.
•Video Galle y
Any membe o he medical s a can upload a ideo ela ed o a ce ain pa ien . Fu -
he mo e, as one can obse e om igu e 5.8 (b) he use can access he ideo galle y o
36 Design o he p oposed sys em
a chosen pa ien and see which ideos ha e been sen by he pa ien o uploaded by a col-
league.
•Pa ien Medical Reco d
This sec ion con ains in o ma ion ela ed o he pa ien . Fo example, he e he medical
s a can see pa ien ’s pe sonal in o ma ion, medical his o y, su ge ies, da es o web o ms
aken and ideos uploaded, among o he s.
Figu e 5.8: Illus a ion o some o he ea u es expec ed on he Medical S a web pla o m. (a)
Videocon e ence be ween he medical s a and pa ien . Pa ien can pe o m some mo o asks and
he use can sa e no es. (b) Video Galle y o ideos uploaded by he pa ien o by any membe
o he medical s a . (c) Illus a ion o he du a ion and ime o occu ence o ce ain e en s o
high impo an in he managemen o he disease, pe day o he mon h. (d) Resul s o pa ien s’
web o m esul s, pe da e, shown as a g aph.
5.3.3 Da abase
All in o ma ion gene a ed in he sys em needs o be sa ely s o ed, made easy and quickly a ailable
so ha when eques ed he use will no wi ness any delay in he upload o download o in o ma-
ion. The e o e, in o de o ensu e a luid and en iching change o in o ma ion i was c ea ed a
da abase o he MoPA sys em. Since, a g ea a ie y o in o ma ion will be gene a ed du ing use ’s
in e ac ion wi h he sys em, se e al en i ies compose his da abase, such as : Pe son, Login, Med-
ical S a , Pa ien , Exam, Ques ion, Choice, Answe , Video, Appoin men s,Appoin men s_de ail,
Cha , Cha _messages and Dia y. Figu e 5.9 illus a es he en i y– ela ionship model p oposed
5.3 P oposed solu ion 37
o he MoPA pla o m. Fu he mo e, a de ailed desc ip ion o he unc ion o each en i y and i s
ela ionships wi h o he en i ies is desc ibed.
Figu e 5.9: P oposed en i y– ela ionship model o he MoPA pla o m
•Pe son
When egis e ing a new use o he sys em, i s ly he is gi en an unique iden i y(ID),
hen he use ’s ull name and he ype o use he is expec ed o ep esen in he pla o m
(pa ien o medical s a ) is s o ed in he Pe son en i y.
•Login
The Login en i y goal is o s o e login in o ma ion such as use ’s use name and pass-
wo d. This in o ma ion will be use ul o g an he use access o he pla o m. In o de , o
iden i y which use belongs he use name and passwo d he o eign key pe son_id exis s in
he en i y. So o ensu e non epe i ion o use names, his a ibu e was selec ed o be he
p ima y key. Fu he mo e, so he sys em can wa n he use o new e en s in he pla o m
since he his las access, he a ibu e las _access is upda ed e e y ime he logs in o ou .
•Pa ien
I a new use is egis e ed as ype ’pa ien ’ hen addi ional in o ma ion mus be added
o he en i y Pa ien . This new en i y is di ec ly connec ed o he Pe son en i y h ough
he ID, i.e., he pe son_id a ibu e wo ks bo h as he p ima y key o he cu en en i y as
well as he o eign key as well as one can obse e om Figu e 5.9. Addi ionally, he e a e
38 Design o he p oposed sys em
u he in o ma ion eques ed such as esidence ela ed da a, sex, en y and exi da es om
he hospi al. The wo las alues can be null as indica ed by he symbol N.
•Medical S a
Simila ly o he Pa ien en i y, he Medical S a en i y has he pe son_id a ibu e unc-
ions as p ima y and o eign key, al hough in his scena io only he phone and mail a e
addi ionally eques ed.
•Web o ms
This en i y is esponsible o s o ing all in o ma ion ela ed o he web o ms aken by
he pa ien s. Each exam will ha e an unique ID (p ima y key) and a pa ien _id will be
associa ed o i as well. As i is possible o see in igu e 5.9, he en i y Pa ien sha es a con-
nec ion one- o-many wi h he Web o ms en i y. The e o e, a use o ype pa ien can answe
se e al web o ms in di e en da es. Consequen ly, in o de o make i ease o di e en ia e
he web o ms aken he e is a ype a ibu e and he da e i was aken.
•Ques ion
This en i y is only used o s o e he ques ions a ailable o he p oposed web o ms.
The e will be a unique ID o each ques ion and he espec i e ques ion ex .
•Choice
Each egis e ed web o m in he Web o ms en i y will ha e se e al choices aken by
he pa ien , o each ques ion answe ed, as illus a ed by he one- o-may ela ionship in
igu e 5.9. This en i y will ha e i s own ID, which will be he p ima y key. Each choice
will ha e i s own associa ed alue. In o de o iden i y o which web o m and ques ion he
choice co esponds o he e a e wo o eign keys: ques ion_id and web o m_id. Mo eo e ,
each choice is ela ed o one ques ion as shown by he one- o-one ela ionship.
•Answe
Each ques ion will ha e se e al co esponden answe s as shown by he one- o-many
ela ionship. Each answe has i s own ID (p ima y Key) and a label associa ed o he o de
i should appea ( i s o i h). Fu he mo e, he a ibu e answe co esponds o ex , he
a ibu e alue is he nume ical alue associa ed o he answe and inally he ype is ela ed
o he web o m he answe co esponds o.
•Video
The Video en i y will ha e he ole o s o ing in o ma ion ela ed o uploaded ideos,
whe he by pa ien s o medical s a , o he pla o m. Each ideo will ha e a unique ID
which will wo k as he P ima y Key. Mo eo e , i is impo an o know when he ideo
was uploaded (a ibu e da e), by whom (pa ien _id o medical_s a _id) and o whe e i was
sa ed (a ibu e u l). This en i y ela es wi h wo o he en i ies: Medical S a and Pa ien .
Fo bo h en i ies he en i y Video has a ela ion o many- o-one.
5.4 P oposed Video App 39
•Appoin men s
This en i y goal is o s o e in o ma ion on he o al numbe o e en s a ce ain da e has.
I has a ela ionship o one- o-many wi h he en i y Appoin men s_de ail.
•Appoin men s_de ail
The Appoin men s_de ail en i y s o es in o ma ion conce ning he e en s which ha e
occu ed o will occu in a ce ain da e. The p ima y key is he a ibu e id. Fu he mo e,
a ibu es pa ien _id and medical_s a _id exis o si ua ions whe e he pa ien o medical
s a membe schedule a p i a e e en o in he case he medical s a schedules an e en o
he pa ien . O he a ibu es a e ela ed o he e en in o ma ion.
•Cha
This en i y egis e s he c ea ed cha s be ween pa ien s and medical s a .
•Cha _messages
Obse ing igu e 5.9 one can obse e ha he en i y Cha has a one- o-many ela ion-
ship wi h his en i y. Wi hin each cha gene a ed he e will be cha messages, each wi h an
unique ID. The message can be sen by ei he a pa ien (a ibu e pa ien _id) o a medical
s a membe (a ibu e medical_s a _id), each wi h a da e o c ea ion associa ed.
•Dia y
This en i y has he aim o s o ing all da a ela ed o e en s inse ed in he Sel -assessmen
dia y sec ion. Fo each added e en he e will be a single ID. Mo eo e , he e en ’s name,
du a ion and hou s o occu ence will also be egis e ed as illus a ed in igu e 5.9. Likewise,
he cu en _medica ion a ibu e will s o e he pa ien ’s medica ion a he ime o submission
as well as o he quan i y aken. Finally, case he pa ien decides o desc ibe ano he ype
o e en ela ed o PD hen he can ill he a ibu es i le, ype and desc ip ion. To each new
e en he pa ien _id and da e will be added.
5.4 P oposed Video App
Du ing he appoin men a HSJ when a pa ien is eques ed o pe o m some mo o asks ela ed
o he UPDRS-mo o usually he nu se p esen a he appoin men s ays esponsible o eco ding
he pa ien . Cu en ly, in e e y appoin men , a digi al came a is used o egis e all exams. The
p oblem associa ed wi h his eco ding is in a la e s age, a e he appoin men ,whe e he nu se
has o ans e he ideo om he came a o a compu e , ename he ile, edi i and la e ans e
i o a olde , wi h he pa ien ’s name, in po able d i e . Howe e , i he nu se had a sys em in
which i would be easy o eco d a ideo, edi i and quickly upload i o he p oposed sys em,
al eady assigned o he pa ien in ques ion, i would sa e a g ea amoun o ime in p ocessing he
gene a ed da a. On he o he hand, i can also be o in e es o ca egi e s o use his mobile app.
Fo example, in he e en he pa ien is showing unexpec ed symp oms o beha io , he ca egi e

40 Design o he p oposed sys em
can quickly ilm i and upload he ideo o he pla o m. La e , he medical s a can isualize such
ideo, analyze he pa ien ’s condi ion and i needed ge in ouch.
Thus, he mobile app p esen ed in igu e 5.10 is p oposed. The use can access his accoun by
inse ing his c eden ials. In he case o he medical s a , once he use has been g an ed access
o he app he can sea ch o he desi ed pa ien ( igu e 5.10 (b)) and be edi ec ed o he galle y
( igu e 5.10 (c)). On he con a y, pa ien s o ca egi e s will be di ec ly edi ec ed o he galle y.
In he galle y, he use can ei he see p e ious uploaded ideos o eco d a new ideo. I he use
wishes o eco d a ideo he jus needs o click Reco d and hen S a . Once he has done eco ding
jus click Sa e, which will au oma ically sa e he ideo associa ed o he pa ien . In he end, all
uploaded ideos will be made a ailable h ough he pla o m.
Figu e 5.10: Mobile app p oposed o eco d pa ien ’s du ing appoin men . (a) F on page o app
whe e he use ’s c eden ials a e eques ed. (b) The menu whe e he use should inse he name o
he pa ien desi ed o eco d. (c) Video Galle y o all ideos uploaded by he pa ien o medical
s a . (d) Chosen ideo om he galle y. (e) Reco ding ideo o pa ien pe o ming mo o asks
du ing he consul a ion.
Chap e 6
Resul s and Valida ion
A e iden i ying he main p oblem in moni o ing PD pa ien s, submi ed o DBS su ge y in HSJ,
i was possible o come up wi h a p oposal, in collabo a ion wi h h ee membe s o he medical
s a o he neu osu ge y depa men , o a mul imedia sys em solu ion in o de o imp o e com-
munica ion be ween pa ien s and hem. In he p e ious chap e , he equi emen s demanded o
he sys em , he a chi ec u e and echnical de ails o be de eloped we e assessed. In he p esen
chap e , he p esen lux o usage o he MoPa’s de eloped p o o ype and he ad an ages o e ed o
he use s will be discussed. In addi ion, esul s o a b ie su ey made o u u e use s o he medical
s a ega ding he po en ial o his sys em in he managemen o pa ien s in a home en i onmen
will be p esen ed and discussed.
6.1 F on page
E e y ime a use accesses he pla o m, i is no al eady logged in, he on page illus a ed in
igu e 6.1a will be p esen ed. Fo bo h web in e aces, ei he o he pa ien o o he medical
s a web in e ace, he p esen ed heade exis s. The heade is composed by a small logo (a ulip
wi h he name MoPA) on he le which wo ks as a link o he espec i e dashboa d. Howe e , he
heade ’s igh side changes when in e ac ing wi h he c ea ed in e aces. This is will be desc ibed
la e in his chap e . Fo he cu en page, he body is ep esen ed by a simple o m whe e he use ’s
use name and passwo d a e eques ed. I he use ’s c eden ials a e accep ed hen, depending on
he ype o use , he will be edi ec ed o he espec i e dashboa d.
41
42 Resul s and Valida ion
(a) (b)
Figu e 6.1: MoPA’s F on page. (a) F on page iew p esen ed o all use s accessing he MoPA
pla o m. (b) The expec lux o usage o all use s accessing he on page.
6.2 Pa ien Web In e ace
The pa ien web in e ace was designed wi h he pu pose o being he mos use iendly and
in ui i e possible. As p e iously e e ed, PD a ec s gene ally people wi h mo e han 65 yea s
old. The e o e, i is ou expec a ion ha a numbe o pa ien s which will be accessing he MoPA
pla o m will no be comple ely com o able a ound a compu e o a web based pla o m. Ne e -
heless, when a PD pa ien is submi ed o DBS su ge y his is al eady an indica o o an ad anced
s age o he disease, and hus mos pa ien s a e al eady accompanied by a second ac o which helps
hem in all hei needs. Hence, his second pe son (a amily membe o hi ed help) hope ully will
be able o access and wo k wi h he pla o m and help he pa ien upload he eques ed in o ma-
ion. In addi ion, a possibili y is also he pa ien going o he local heal hca e cen e and eques
help o he medical s a in accessing he pla o m.
All pages ha compose his in e ace end no o p esen oo much in o ma ion and be as simple
and s aigh o wa d as possible so ha all pa ien s a e able o comp ehend wha is eques ed. Fo
example, when pa ien s a e edi ec ed om he on page sc een o he dashboa d hey a e aced
wi h igu e 6.2a. As one can obse e om his igu e, simila ly o he on page, he use is
p esen ed wi h a heade ba . Howe e , in he p esen ed dashboa d he e a e h ee icons posi ioned
in he igh side o he heade . Fi s ly, an en elope icon ep esen s a link o he la es messages he
use has ecei ed om he medical s a on his Cha , secondly a bell icon indica es he mo e ecen
asks he use has been assigned on his Calenda and he la e ( he use icon) allows he pa ien
o logou om he pla o m. Mo eo e , he body panel is composed by he MoPA main symbol,
an in o ma ion panel and i e di e en icons. In one hand, he in o ma ion panel indica es he
gene a ed in o ma ion by he use since he i s s a ed using he pla o m, indica ing he numbe
o ideos uploaded, he aken web o ms and he sen messages o he medical s a . On he o he
6.2 Pa ien Web In e ace 43
(a) (b)
Figu e 6.2: View and expec ed lux o usage o all use s accessing he pa ien ’s web pla o m
dashboa d. (a) MoPA pa ien ’s web in e ace dashboa d. (b) The expec lux o usage o all use s
accessing he dashboa d.
hand, he p esen ed i e icons ep esen i e di e en sec ions wi h which he use is expec ed o
in e ac wi h. Each one o hese icons has a name, a desc ip ion and a link o he espec i e page.
The a ailable sec ions a e : he Sel -assessmen dia y, Non-mo o symp om web o m, Calenda ,
Cha and Video Galle y.
6.2.1 Sel -assessmen Dia y
The p esen sec ion wo ks as an e en log. In HSJ pa ien s a e, in each appoin men wi h he
neu ologis , eques ed o ill a able o e en s, whe e in one column he hou s o he day a e
p esen ed and in all he o he s di e en e en s ela ed o PD a e ep esen ed (Appendix C). The
pa ien is expec ed o indica e he hou s whe e each e en ook place. In he pa ien web in e ace,
i is p esen ed a simila able o e en s ( igu e 6.3a). He ein he pa ien s a e expec ed o ill his
able daily o as much as possible in a week. Fu he mo e, he use should selec he hou s whe e
he e en s p esen ed in he able heade occu ed. Those e en s a e: sleep, OFF pe iods and ON
pe iods wi h ei he no dyskinesias, small dyskinesias o sha p dyskinesias. Fo example, imagine
he pa ien was only capable o sleep om 23h o 02h hen he would selec he cells which ep esen
hose hou s. By selec ing an hou o occu ence o a ce ain e en he bu on becomes ed while
a unselec ed bu on p esen s a g eyish colo . Hence, a column o eddish cells would appea
be ween 23h-24h o 01h-02h. Fu he mo e, possibly he pa ien was no able o sleep because o
dyskinesias. Again, acco ding o he ype o dyskinesia, he pa ien would selec he hou s whe e
ha e en ook place. Thus, a membe o he medical s a may combine he hou s o occu ence
and du a ion o di e en e en s in di e en days o weeks and c ea e an in e es ing pa e n which
would desc ibe he e ec o PD in ha pa ien ’s Qol.
50 Resul s and Valida ion
(a) (b)
Figu e 6.11: New Pa ien Medical Reco d (a) View o some o he eques ed in o ma ion o he
new pa ien o be added(b) The ac i i y diag am o he p esen sec ion.
6.3.2.3 Pa ien Calenda
The use can see all e en s scheduled o he pa ien and by he pa ien . Addi ionally, he is able o
schedule an e en ela ed o he managemen o he disease o a selec ed pa ien . The p ocedu e
is p esen ed in igu e 6.12a al hough i is e y simila o he illus a ed in igu e 6.5a. Howe e ,
in his case he use canno al e e en s scheduled by he pa ien s only hose scheduled by he
medical s a . In o ma ion such as e en ype (appoin men , phone call, web o m o ideo upload)
is demanded in o each added e en , as well as a da e, hou and a b ie desc ip ion.
6.3.3 Dia ies
Pa ien ’s a e eques ed o gi e in o ma ion ela ed o e en s o g ea impo ance in he manage-
men o PD. Thus du a ion, hou s o occu ence, medica ion a he ime, day i occu ed, b ie
desc ip ion o e en and well being a e impo an o he medical s a . Fi s ly, he use is asked o
selec a pa ien . Then, he pa ien ’s egis e ed e en s a e shown o any membe o he medical s a
in wo manne s: i s ly a ho izon al imeline is p esen ed and la e a e ical imeline. The i s
imeline, is composed o se e al icons. Each icon ep esen s an e en : Take he example shown
in igu e 6.13a whe e he e a e h ee di e en icons: he medical case indica es e en s ela ed o
medica ion, while he blue icon wi h a pe son indica es e en s ela ed o gai and las he ligh ning
in he ed colo ep esen s dyskinesias. I he use ho e s he icon a label indica ing he e en ype
pops up and unde he icon is he da e when he e en occu ed. On he o he hand, e e y ime
he use clicks one o he icons he is edi ec ed o he e ical imeline. In his imeline, he e en s
a e comple ely desc ibed showing o he use he da e, du a ion, medica ion a he ime and ull
desc ip ion o he e en as shown in igu e 6.13b.

6.3 Hospi al Web In e ace 51
(a) (b)
Figu e 6.12: Pa ien calenda (a) View o he pa ien calenda . Can check scheduled e en s and
add new e en s. He e he use should indica e he ype o e en , day, hou and desc ip ion o add.
(b) The ac i i y diag am o he p esen sec ion.
52 Resul s and Valida ion
(a) (b)
(c)
Figu e 6.13: (a) Pa ien e en s dia y. He e he pa ien can see numbe o uploaded e en s, by ype.
Mo eo e , he use can in e ac wi h he ho izon al imeline, see some in o ma ion ela ed o each
e en , and by clicking access he mo e de ailed desc ip ion o ha e en in he e ical imeline.
(b) The e ical imeline gi es he use he chance o u he analyze he e en s inse ed by he
pa ien . (c) The ac i i y diag am o he p esen sec ion.
6.3 Hospi al Web In e ace 53
(a) (b)
Figu e 6.14: Pa ien Galle y (a) The use has access o all ideos uploaded by pa ien s and by he
medical s a . I he use wishes o educed he numbe o a ailable ideos he can selec a pa ien .
By clicking one o he links he use is edi ec o he ideo’s page.(b) The ac i i y diag am o he
p esen sec ion.
6.3.4 Galle y
When he use accesses he Galle y, as illus a ed in igu e 6.14a all ideos uploaded by ei he all
pa ien s o he medical s a a e shown. The uploaded ideos a e sepa a ed by he uploaded ype
o use . On he le side o he page a window con aining all pa ien ’s uploaded ideo is p esen ed
while on he igh side a window con aining all pa ien ’s ideos uploaded by he medical s a .
Howe e , i he use wishes o see only he ideos o a ce ain pa ien hen he should selec he
pa ien as i occu s o he p e ious desc ibed sec ions. In his las case, he page will be eloaded
and only he selec pa ien ’s ideos will be made a ailable. I he use chooses o see a speci ic
ideo hen he should click he espec i e link, being immedia ely edi ec ed o he espec i e page.
6.3.4.1 Video De ails
He ein he use can isualize he ideo’s de ails such as who uploaded i , da e o upload, desc ip-
ion, medica ion and o cou se play he ideo as illus a ed in igu e 6.15a.
6.3.4.2 Video Compa ison
Use s will be capable o compa ing wo ideos o he same pa ien . They a e only eques ed o
selec he da es o he ideos hey wan o compa e, being hen able o play bo h a he same ime.
Addi ionally, unde each ideo he p e ious esul s om he web o ms aken by he pa ien will
be shown.
54 Resul s and Valida ion
(a) (b)
Figu e 6.15: Video De ails (a) He e he use can ead all he in o ma ion ela i ely o he chosen
ideo as well as play he ideo. (b) The ac i i y diag am o he p esen sec ion.
(a) (b)
Figu e 6.16: Video Compa ison (a) The use can selec on he op o he page a ideo o compa e
wi h om se e al a ailable. The ideos a e o de ed acco ding o he da e o upload. Below he
ideos he esul s o he p e ious web o ms aken (b) The ac i i y diag am o he p esen sec ion.
6.3.5 My Calenda
Simila ly o he pa ien calenda , p esen ed in igu e 6.5, a medical s a membe is able o add
p i a e e en s, check, dele e o upload al eady schedule ones.
6.3.6 Cha
The cha will ha e he same goal as he one p esen o he pa ien . He e he use can choose o
each pa ien o call and he e will also be a message boa d o ade w i en messages.
6.4 Video App 55
6.4 Video App
The mobile ideo app gi es, on one side, he possibili y o ca egi e s o eco d and upload o
he pla o m spon aneous PD e en s o g ea impo ance o he managemen o he disease, as
well as ha ing he goal o educing he ime consump ion o he medical s a when eco ding PD
pa ien s a hei appoin men s and la e in he edi ing/s o ing o he ideo. As p e iously e e ed,
he nu ses a e esponsible o hese asks. Mos o he ime consump ion occu s a e eco ding
he ideo. Fo example, due o he ideo being eco ded wi h a digi al came a a good pa o he
ime is spen wi h ans e ing he ideo om he came a o a compu e , edi ing and s o ing i .
Figu e 6.17 (a) illus a es he cu en mobile app, whe e he use can inse he pa ien medical
eco d numbe and go o he espec i e galle y page. In he case o he ca egi e , he will be di ec ly
edi ec ed o he galle y. He e ( igu e 6.17 (b)) he use can selec ideos o wa ch o eco d a new
ideo. Figu e 6.17 (c) shows he iew o he use when eco ding a ideo. A e he use s ops
eco ding he ideo is uploaded o he pla o m.
Figu e 6.17: Se e al iews o he mobile ideo app. (a) The on page o he app whe e he use
can inse he pa ien ’s name he desi es o eco d. (b) Video galle y whe e he use can see any
p e ious eco ded ideos o eco d a new one. (c) View o he eco ding ideo page
6.5 Valida ion
The po en ial and use ulness o he MoPA sys em in moni o ing, in a home en i onmen , he se o
p e iously desc ibed PD pa ien s o HSJ has been assessed wi h he medical s a . The sys em was
i s ly in oduced o all and la e an online o m was made a ailable (Appendix E). In he end, a
o al o 10 people (physicians and nu se s) om a o al o 25 u u e use s answe ed his o m and
he ob ained esul s a e p esen ed in able 6.1, able 6.2 and able 6.3.

56 Resul s and Valida ion
Rega ding ques ions ela ed o he capaci y o his sys em being able o ob ain mo e in o ma-
ion ela i ely o he pa ien ’s heal h a home he majo i y concu i would be an impo an asse
and, addi ionally, ha such da a could ha e a posi i e impac on he diagnosis, ea men and in
he educ ion o ex a appoin men s. In addi ion, i is he g oup’s opinion ha pa ien s will use
he sys em i encou aged o and ha he pa ien web pla o m s ill needs some imp o emen since
mos belie e he deg ee o di icul y in in e ac ing wi h he pla o m alls wi hin he mode a e
le el. Mo eo e , when ques ioned abou he mos impe a i e ea u es he majo i y indica ed hose
ela ed o ideo and he pa ien ’s dia y a e he mos ele an in he pla o m. Ne e heless, o all
ea u es none was classi ied below needed.
Table 6.1: Ques ions ela ed o he po en ial o he MoPA in he diagnosis and ea men o PD
pa ien s o HSJ.
Ques ion Yes No
The ob ained in o ma ion om he pla o m will be use ul o he
diagnosis and ea men ? 90% 10%
Do you hink MoPA will gi e you mo e in o ma ion o pa ien ’s
heal h a home? 90% 10%
Do you hink ex a appoin men s can be educed do o MoPA? 100% 0%
Do you hink pa ien s will pa icipa e, i encou aged o? 90% 10%
Table 6.2: Web o m asking u u e use s he impac MoPA may ha e in hei wo k and he di icul y
i may appea when in e ac ing wi h he sys em.
Ques ion 1 2 3 4 5
I you hink he MoPA will gi e you mo e in o -
ma ion ela i ely o pa ien ’s well being a home,
in a scale om 1 (none) o 5 (big) indica e he
impac i may ha e.
0% 0% 11.1% 66.7% 22.2%
The di icul y deg ee in in e ac ing wi h he pla -
o m being 1(low) and 5(high)?
44.4% 44.4% 11.1% 0% 0%
The di icul y deg ee o he pa ien in in e ac ing
wi h he pla o m being 1(low) and 5(high)?
10% 10% 60% 20% 0%
6.5 Valida ion 57
Table 6.3: Choices gi en acco ding he he impo ance gi en, by he u u e use s o he medical
s a , o he ea u es o he MoPA sys em.
MoPA’s Fea u es I ele an In e es ing Use ul Needed Impe a i e
Web o ms and Cha s 0% 0% 60% 20% 20%
Video Upload (Pa ien and Medical S a ) 0% 0% 30% 50% 20%
Video Compa ison 0% 0% 50% 10% 40%
Sel -assessmen dia y and Timelines 0% 0% 30% 30% 40%
Pe sonal Calenda 0% 0% 40% 40% 20%
Cha 0% 0% 40% 50% 10%
Video Con e ence 0% 0% 60% 20% 10%
Pa ien Calenda 0% 0% 71.4% 0% 28.6%
Mobile App 0% 0% 70% 10% 20%
Chap e 7
Conclusions and Fu u e Wo k
Du ing he las pe iod o he 20 h cen u y and he beginning o he 21s cen u y, he le els o
QoL o ci izens li ing in he weal hy coun ies inc eased on a la ge scale leading o a g ow h in
he a e age li e expec ancy. The e o e, de eloped coun ies a e p og essing o a scena io whe e
he numbe o elde ly people will go a beyond he numbe o young people. Mo eo e , wi h
a g ea e popula ion o elde ly people i is expec ed o he numbe o people su e ing om
ch onic diseases o inc ease as well. PD is one hose ch onic diseases o see i s numbe o pa ien s
inc ease in he nex decades. Thus, i is o u mos u gency o ake ad an age o he ecen g ea
echnological de elopmen o inno a e and de elop new solu ions in o de o imp o e he quali y
o heal h se ices and, abo e all, ake he same quali y o se ices o ci izens who li e in mo e
isola ed a eas ela i ely o he main hospi als.
The p esen wo k aimed a he c ea ion o a pla o m ha would allow o he a ainmen o
a mo e cons an , accu a e and be e p ocessed in o ma ion on PD pa ien s’ QoL, di icul ies and
accomplishmen s o hei daily li ing hus empowe ing he physicians o HSJ wi h his da a (mo e
han p e iously), o e long pe iods o ime, ha would enable hem o pe o m a be e diagnosis
and hence sugges a be e ea men . Fu he mo e, he wo k goes owa ds Eu opean Commission’s
inci emen o apply ICT o heal hca e sys ems in o de o imp o e he QoL and ake high quali y
heal hca e se ices o all ci izens.
In chap e 3 ou published s udies we e p esen ed. In each wo k he au ho s p oposed a
solu ion o be e moni o PD pa ien s in a home en i onmen , ex ac ing in o ma ion ela i ely
o his illness key ea u es. The i s wo publica ions (sec ion 3.1 and sec ion 3.2) e e ed o he
collec ion o in o ma ion ela ing o he mo o impai men imposed by he disease, h ough use
o indi idual senso s o SP’s senso s. The da a ob ained om hese senso s ep esen impo an
in o ma ion acco ding o he mo o impai men imposed by he disease such as imbalance, pos u e,
emo , b adykinesia, dyskinesia, among o he s, in a home en i onmen . Howe e , he e was no
p oposed solu ion o ga he pa ien ’s in o ma ion in ela ion o o he ac o s such as mood swings,
dep ession , ou ine ac i i ies, e c . On he o he hand, he las wo pape s p esen ed (sec ion 3.3)
we e designed in o de o ob ain mo e in o ma ion ela i ely o pa ien ’s daily li ing. The i s
besides using senso s as he p e ious wo s udies, also ocused in ob aining in o ma ion ega ding
59

Appendix A
Uni ied Pa kinson’s Disease Ra ing
Scale
67
UNIFIED PARKINSON'S DISEASE RATING SCALE
I. MENTATION, BEHAVIOR AND MOOD
0 = None.
1 = Mild. Consis en o ge ulness wi h pa ial ecollec ion o e en s and no o he di icul ies.
2 = Mode a e memo y loss, wi h diso ien a ion and mode a e di icul y handling complex p oblems. Mild bu de ini e
impai men o unc ion a home wi h need o occasional p omp ing.
3 = Se e e memo y loss wi h diso ien a ion o ime and o en o place. Se e e impai men in handling p oblems.
4 = Se e e memo y loss wi h o ien a ion p ese ed o pe son only. Unable o make judgemen s o sol e p oblems.
Requi es much help wi h pe sonal ca e. Canno be le alone a all.
1. In ellec ual Impai men
(Due o demen ia o d ug in oxica ion)
0 = None.
1 = Vi id d eaming.
2 = "Benign" hallucina ions wi h insigh e ained.
3 = Occasional o equen hallucina ions o delusions; wi hou insigh ; could in e e e wi h daily ac i i ies.
4 = Pe sis en hallucina ions, delusions, o lo id psychosis. No able o ca e o sel .
2. Though Diso de
0 = None.
1 = Pe iods o sadness o guil g ea e han no mal, ne e sus ained o days o weeks.
2 = Sus ained dep ession (1 week o mo e).
3 = Sus ained dep ession wi h ege a i e symp oms (insomnia, ano exia, weigh loss, loss o in e es ).
4 = Sus ained dep ession wi h ege a i e symp oms and suicidal hough s o in en .
3. Dep ession
0 = No mal.
1 = Less asse i e han usual; mo e passi e.
2 = Loss o ini ia i e o disin e es in elec i e (non ou ine) ac i i ies.
3 = Loss o ini ia i e o disin e es in day o day ( ou ine) ac i i ies.
4 = Wi hd awn, comple e loss o mo i a ion.
4. Mo i a ion/Ini ia i e
II. ACTIVITIES OF DAILY LIVING ( o bo h "on" and "o ")
0 = No mal.
1 = Mildly a ec ed. No di icul y being unde s ood.
2 = Mode a ely a ec ed. Some imes asked o epea s a emen s.
3 = Se e ely a ec ed. F equen ly asked o epea s a emen s.
4 = Unin elligible mos o he ime.
5. Speech
0 = No mal.
1 = Sligh bu de ini e excess o sali a in mou h; may ha e nigh ime d ooling.
2 = Mode a ely excessi e sali a; may ha e minimal d ooling.
3 = Ma ked excess o sali a wi h some d ooling.
4 = Ma ked d ooling, equi es cons an issue o handke chie .
6. Sali a ion
0 = No mal.
1 = Ra e choking.
2 = Occasional choking.
3 = Requi es so ood.
4 = Requi es NG ube o gas o omy eeding.
7. Swallowing
0 = No mal.
1 = Sligh ly slow o small.
2 = Mode a ely slow o small; all wo ds a e legible.
3 = Se e ely a ec ed; no all wo ds a e legible.
4 = The majo i y o wo ds a e no legible.
8. Handw i ing
0 = No mal.
1 = Somewha slow and clumsy, bu no help needed.
2 = Can cu mos oods, al hough clumsy and slow; some help needed.
3 = Food mus be cu by someone, bu can s ill eed slowly.
4 = Needs o be ed.
9. Cu ing ood and handling u ensils
0 = No mal.
1 = Somewha slow, bu no help needed.
2 = Occasional assis ance wi h bu oning, ge ing a ms in slee es.
3 = Conside able help equi ed, bu can do some hings alone.
4 = Helpless.
10. D essing
0 = No mal.
1 = Somewha slow, bu no help needed.
2 = Needs help o showe o ba he; o e y slow in hygienic ca e.
3 = Requi es assis ance o washing, b ushing ee h, combing hai , going o ba h oom.
4 = Foley ca he e o o he mechanical aids.
11. Hygiene
0 = No mal.
1 = Somewha slow and clumsy, bu no help needed.
2 = Can u n alone o adjus shee s, bu wi h g ea di icul y.
3 = Can ini ia e, bu no u n o adjus shee s alone.
4 = Helpless.
12. Tu ning in bed and adjus ing bed clo hes
0 = None.
1 = Ra e alling.
2 = Occasionally alls, less han once pe day.
3 = Falls an a e age o once daily.
4 = Falls mo e han once daily.
13. Falling (un ela ed o eezing)
0 = None.
1 = Ra e eezing when walking; may ha e s a hesi a ion.
2 = Occasional eezing when walking.
3 = F equen eezing. Occasionally alls om eezing.
4 = F equen alls om eezing.
14. F eezing when walking
0 = No mal.
1 = Mild di icul y. May no swing a ms o may end o d ag leg.
2 = Mode a e di icul y, bu equi es li le o no assis ance.
3 = Se e e dis u bance o walking, equi ing assis ance.
4 = Canno walk a all, e en wi h assis ance.
15. Walking
(Symp oma ic complain o emo in any pa o body.)
0 = Absen .
1 = Sligh and in equen ly p esen .
2 = Mode a e; bo he some o pa ien .
3 = Se e e; in e e es wi h many ac i i ies.
4 = Ma ked; in e e es wi h mos ac i i ies.
16. T emo
0 = None.
1 = Occasionally has numbness, ingling, o mild aching.
2 = F equen ly has numbness, ingling, o aching; no dis essing.
3 = F equen pain ul sensa ions.
4 = Exc ucia ing pain.
17. Senso y complain s ela ed o pa kinsonism
III. MOTOR EXAMINATION
0 = No mal.
1 = Sligh loss o exp ession, dic ion and/o olume.
2 = Mono one, slu ed bu unde s andable; mode a ely impai ed.
3 = Ma ked impai men , di icul o unde s and.
4 = Unin elligible.
18. Speech
0 = No mal.
1 = Minimal hypomimia, could be no mal "Poke Face".
2 = Sligh bu de ini ely abno mal diminu ion o acial exp ession
3 = Mode a e hypomimia; lips pa ed some o he ime.
4 = Masked o ixed acies wi h se e e o comple e loss o acial exp ession; lips pa ed 1/4 inch o mo e.
19. Facial Exp ession
(head, uppe and lowe ex emi ies)
0 = Absen .
1 = Sligh and in equen ly p esen .
2 = Mild in ampli ude and pe sis en . O mode a e in ampli ude, bu only in e mi en ly p esen .
3 = Mode a e in ampli ude and p esen mos o he ime.
4 = Ma ked in ampli ude and p esen mos o he ime.
20. T emo a es
0 = Absen .
1 = Sligh ; p esen wi h ac ion.
2 = Mode a e in ampli ude, p esen wi h ac ion.
3 = Mode a e in ampli ude wi h pos u e holding as well as ac ion.
4 = Ma ked in ampli ude; in e e es wi h eeding.
21. Ac ion o Pos u al T emo o hands
(Judged on passi e mo emen o majo join s wi h pa ien elaxed in si ing posi ion. Cogwheeling o be
igno ed.)
0 = Absen .
1 = Sligh o de ec able only when ac i a ed by mi o o o he mo emen s.
2 = Mild o mode a e.
3 = Ma ked, bu ull ange o mo ion easily achie ed.
4 = Se e e, ange o mo ion achie ed wi h di icul y.
22. Rigidi y
(Pa ien aps humb wi h index inge in apid succession.)
0 = No mal.
1 = Mild slowing and/o educ ion in ampli ude.
2 = Mode a ely impai ed. De ini e and ea ly a iguing. May ha e occasional a es s in mo emen .
3 = Se e ely impai ed. F equen hesi a ion in ini ia ing mo emen s o a es s in ongoing mo emen .
4 = Can ba ely pe o m he ask.
23. Finge Taps
(Pa ien opens and closes hands in apid succesion.)
0 = No mal.
1 = Mild slowing and/o educ ion in ampli ude.
2 = Mode a ely impai ed. De ini e and ea ly a iguing. May ha e occasional a es s in mo emen .
3 = Se e ely impai ed. F equen hesi a ion in ini ia ing mo emen s o a es s in ongoing mo emen .
4 = Can ba ely pe o m he ask.
24. Hand Mo emen s
(P ona ion-supina ion mo emen s o hands, e ically and ho izon ally,
wi h as la ge an ampli ude as possible, bo h hands simul aneously.)
0 = No mal.
1 = Mild slowing and/o educ ion in ampli ude.
2 = Mode a ely impai ed. De ini e and ea ly a iguing. May ha e occasional a es s in mo emen .
3 = Se e ely impai ed. F equen hesi a ion in ini ia ing mo emen s o a es s in ongoing mo emen .
4 = Can ba ely pe o m he ask.
25. Rapid Al e na ing Mo emen s o Hands
(Pa ien aps heel on he g ound in apid succession picking up en i e leg. Ampli ude should be a leas
3 inches.)
0 = No mal.
1 = Mild slowing and/o educ ion in ampli ude.
2 = Mode a ely impai ed. De ini e and ea ly a iguing. May ha e occasional a es s in mo emen .
3 = Se e ely impai ed. F equen hesi a ion in ini ia ing mo emen s o a es s in ongoing mo emen .
4 = Can ba ely pe o m he ask.
26. Leg Agili y
(Pa ien a emp s o ise om a s aigh backed chai , wi h a ms olded ac oss ches .)
0 = No mal.
1 = Slow; o may need mo e han one a emp .
2 = Pushes sel up om a ms o sea .
3 = Tends o all back and may ha e o y mo e han one ime, bu can ge up wi hou help.
4 = Unable o a ise wi hou help.
27. A ising om Chai
0 = No mal e ec .
1 = No qui e e ec , sligh ly s ooped pos u e; could be no mal o olde pe son.
2 = Mode a ely s ooped pos u e, de ini ely abno mal; can be sligh ly leaning o one side.
3 = Se e ely s ooped pos u e wi h kyphosis; can be mode a ely leaning o one side.
4 = Ma ked lexion wi h ex eme abno mali y o pos u e.
28. Pos u e
0 = No mal.
1 = Walks slowly, may shu le wi h sho s eps, bu no es ina ion (has ening s eps) o p opulsion.
2 = Walks wi h di icul y, bu equi es li le o no assis ance; may ha e some es ina ion, sho s eps, o p opulsion.
3 = Se e e dis u bance o gai , equi ing assis ance.
4 = Canno walk a all, e en wi h assis ance.
29. Gai

(Response o sudden, s ong pos e io displacemen p oduced by pull on shoulde s while pa ien
e ec wi h eyes open and ee sligh ly apa . Pa ien is p epa ed.)
0 = No mal.
1 = Re opulsion, bu eco e s unaided.
2 = Absence o pos u al esponse; would all i no caugh by examine .
3 = Ve y uns able, ends o lose balance spon aneously.
4 = Unable o s and wi hou assis ance.
30. Pos u al S abili y
(Combining slowness, hesi ancy, dec eased a mswing, small ampli ude, and
po e y o mo emen in gene al.)
0 = None.
1 = Minimal slowness, gi ing mo emen a delibe a e cha ac e ; could be no mal o some pe sons. Possibly educed
ampli ude.
2 = Mild deg ee o slowness and po e y o mo emen which is de ini ely abno mal. Al e na i ely, some educed
ampli ude.
3 = Mode a e slowness, po e y o small ampli ude o mo emen .
4 = Ma ked slowness, po e y o small ampli ude o mo emen .
31. Body B adykinesia and Hypokinesia
IV. COMPLICATIONS OF THERAPY (In he pas week)
A. DYSKINESIAS
(His o ical in o ma ion.)
0 = None
1 = 1-25% o day.
2 = 26-50% o day.
3 = 51-75% o day.
4 = 76-100% o day.
32. Du a ion: Wha p opo ion o he waking day a e dyskinesias p esen ?
(His o ical in o ma ion; may be modi ied by o ice examina ion.)
0 = No disabling.
1 = Mildly disabling.
2 = Mode a ely disabling.
3 = Se e ely disabling.
4 = Comple ely disabled.
33. Disabili y: How disabling a e he dyskinesias?
0 = No pain ul dyskinesias.
1 = Sligh .
2 = Mode a e.
3 = Se e e.
4 = Ma ked.
34. Pain ul Dyskinesias: How pain ul a e he dyskinesias?
(His o ical in o ma ion.)
0 = No
1 = Yes
35. P esence o Ea ly Mo ning Dys onia
B. CLINICAL FLUCTUATIONS
0 = No
1 = Yes
36. A e "o " pe iods p edic able?
0 = No
1 = Yes
37. A e "o " pe iods unp edic able?
0 = No
1 = Yes
38. Do "o " pe iods come on suddenly, wi hin a ew seconds?
0 = None
1 = 1-25% o day.
2 = 26-50% o day.
3 = 51-75% o day.
4 = 76-100% o day.
39. Wha p opo ion o he waking day is he pa ien "o " on a e age?
C. OTHER COMPLICATIONS
0 = No
1 = Yes
40. Does he pa ien ha e ano exia, nausea, o omi ing?
0 = No
1 = Yes
41. Any sleep dis u bances, such as insomnia o hype somnolence?
( Reco d he pa ien 's blood p essu e, heigh and weigh on he sco ing o m)
0 = No
1 = Yes
42. Does he pa ien ha e symp oma ic o hos asis?
V. MODIFIED HOEHN AND YAHR STAGING
STAGE 0 = No signs o disease.
STAGE 1 = Unila e al disease.
STAGE 1.5 = Unila e al plus axial in ol emen .
STAGE 2 = Bila e al disease, wi hou impai men o balance.
STAGE 2.5 = Mild bila e al disease, wi h eco e y on pull es .
STAGE 3 = Mild o mode a e bila e al disease; some pos u al ins abili y; physically independen .
STAGE 4 = Se e e disabili y; s ill able o walk o s and unassis ed.
STAGE 5 = Wheelchai bound o bed idden unless aided.
VI. SCHWAB AND ENGLAND ACTIVITIES OF DAILY LIVING SCALE
100% = Comple ely independen . Able o do all cho es wi hou slowness, di icul y o impai men . Essen ially no mal.
Unawa e o any di icul y.
90% = Comple ely independen . Able o do all cho es wi h some deg ee o slowness, di icul y and impai men . Migh
ake wice as long. Beginning o be awa e o di icul y.
80% = Comple ely independen in mos cho es. Takes wice as long. Conscious o di icul y and slowness.
70% = No comple ely independen . Mo e di icul y wi h some cho es. Th ee o ou imes as long in some. Mus spend
a la ge pa o he day wi h cho es.
60% = Some dependency. Can do mos cho es, bu exceedingly slowly and wi h much e o . E o s; some impossible.
50% = Mo e dependen . Help wi h hal , slowe , e c. Di icul y wi h e e y hing.
40% = Ve y dependen . Can assis wi h all cho es, bu ew alone.
30% = Wi h e o , now and hen does a ew cho es alone o begins alone. Much help needed.
20% = No hing alone. Can be a sligh help wi h some cho es. Se e e in alid.
10% = To ally dependen , helpless. Comple e in alid.
0% = Vege a i e unc ions such as swallowing, bladde and bowel unc ions a e no unc ioning. Bed idden.
Appendix B
Guidelines used in HSJ nu se call cen e
75

Appendix D
Cos s and du a ion o jou neys o HSJ
o pa ien s li ing ou side Po o.
83
Cos s and du a ion o jou neys o HSJ o pa ien s li ing ou side Po o. 85
Table D.1: Table o expec ed cos s and du a ion, pe ype o anspo a ion, o pa ien s ou side he
egion o Po o who a e a ending an appoin men a HSJ.
A e age T ip Du a ion (hou s) A e age P ice (Eu os)
Two way jou ney T ain Bus Ca T ain Bus Ca
Coimb a 3.8 2.8 3.0 25.7 21.3 37.0
Viseu No A ailable 5.8 3.4 No A ailable 22.3 45.1
Gua da 7.2 6.6 5.0 49.4 27.3 64.4
Lei ia 5.5 5.3 5.0 41.8 30.4 58.6
Cas elo B anco 9.3 7.0 6.7 50.9 30.4 70.6
Co ilhã 11.6 8.0 6.0 57.1 32.1 88.5
Po aleg e No A ailable 10.0 7.3 No A ailable 43.8 71.2
San a ém 4.9 6.5 5.6 50.6 35.2 93.2
Lisboa 5.6 7.0 7.8 54.6 35.2 103.5
Se úbal 8.3 8.2 7.8 76.8 43.8 117.3
Fa o 13.9 16.5 12.0 95.0 60.8 190.3
Appendix E
MoPA’s Valida ion Fo m p esen ed o
he medical s a o HSJ.
87

19/06/2015 Validaçãodapla a o maMoPA(Moni o ingPa kinson’s)
h ps://docs.google.com/ o ms/d/1bY G8RUCCN5AXx_Ku sY0 LN9AVN5G0m_8CYJNFXEWI/p in o m 1/2
Validaçãodapla a o maMoPA(Moni o ing
Pa kinson’s)
Oseguin eques ioná io emcomoobjec i oa ecolhadein o mação ela i amen eà
po encialidadequesis emamul imédiaMoPApode áap esen a aos u u osu ilizado es
(pacien esDBSes a médico)dodepa amen odeneu oci u giaHospi aldeSãoJoão.
*Ob iga ó io
1. P o issão:*
2. Sexo*
Ma ca apenasumao al.
Masculino
Femenino
3. Ain o maçãoob idaapa i dapla a o maajuda ánodiagnós icoe a amen odo
pacien e?*
Ma ca apenasumao al.
Sim
Não
4. Idade*
5. Ac edi aqueapla a o malheda ámaisin o mação ela i amen eaoes adode
saúdedopacien eemcasa?*
Ma ca apenasumao al.
Sim
Não
6. Sesim,numaescalade1(nenhum)a5(G ande)iden i iqueoimpac oquepode á
e .
Ma ca apenasumao al.
12345
Nenhum G ande
19/06/2015 Validaçãodapla a o maMoPA(Moni o ingPa kinson’s)
h ps://docs.google.com/ o ms/d/1bY G8RUCCN5AXx_Ku sY0 LN9AVN5G0m_8CYJNFXEWI/p in o m 2/2
Com ecnologia
7. Ac edi aqueonúme odeconsul asex as,p o ocadaspo máin e p e açãodo
pacien edosseussin omas,pode ãose  eduzidas?*
Ma ca apenasumao al.
Sim
Não
8. Ac edi aqueha e áadesãopo pa edospacien es,seincen i ados?*
Ma ca apenasumao al.
Sim
Não
9. Qualog audedi iculdadeque ênasuain e acçãocomapla a o ma?
Ma ca apenasumao al.
12345
Baixa G ande
10. Qualog audedi iculdadeque ênain e acçãodopacien ecomapla a o ma?
Ma ca apenasumao al.
12345
Baixa G ande
11. Qualasca ac e ís icasdapla a o maquepa asisãodemaio in e essepa aoseu
abalhocomPa kinsónicos?
Ma ca apenasumao alpo linha.
I ele an e Pouco
in e essan e Ú il Necessá io Indispensá el
Ques ioná iosedados
es a ís icos
Uploadde ídeos
(Casei oseconsul as)
Compa açãode
Vídeos
Diá iodee en os
impo an ese imeline
dessese en os
Calendá iopessoal
T ocademensagens
VideoCon e ência
Calendá ioPacien e
Appendix F
DCE 2015 Pa icipa ion Diploma
91
answe pa ien ’s messages o alk h ough a ideo con e ence
sys em and access o c ea e pa ien ’s medical eco d. As i
is illus a ed in Figu e 1 B) he sys em in ol es so wa e
se ices unning a h ee ie s: pa ien ’s and medical s a ’s
web in e ace, a cen al se e and a da abase se e .
III. SYSTEM DESIGN
Use s a e welcomed o he pla o m h ough a on page
sc een whe e hey a e eques ed o hei use name and
passwo d. Acco ding o he inse ed c eden ials he use
edi ec ed o he espec i e homepage.
A. Pa ien Web In e ace
Pa ien s ge edi ec ed om he on page sc een o hei
homepage. The main page will be composed o a ask panel
and i e icons. The ask panel will ha e in o ma ion ela i ely
o he use ac i i y while each one o he p esen ed icons
will be di ec links o o he sec ions: Non-mo o symp oms
web o m, Video Galle y, Calenda , Cha and Sel -assessmen
Dia y.
1) Non-mo o symp oms web o m: This sec ion, illus-
a ed in Figu e 2 a) is a g oup o 8 ques ions, each wi h 5
possible answe s, om he second domain o he UPDRS [8].
Ques ions ela ed o d ooling, swallow, cu ing o ood and
handling o cu le y, d essing, pe sonal hygiene, u ning in
bed and adjus ing bed clo hes, alling and senso y complain s
ela ed o Pa kinsonism we e conside ed. Acco ding o he
answe gi en by he pa ien , which goes om a le el o he
pa ien being able o ul il he asks (ze o) o needing ull
help om ano he pe son ( ou ), i is possible o ob ain a inal
sco e ha will objec i ely indica e he impai men imposed
by PD on ac i i ies o daily li ing. Once he pa ien inishes
he ques ionnai e, he is edi ec ed o he homepage and all
answe s a e sa ed in a da abase o la e analysis.
2) Video Galle y: Wi hin he ideo galle y (Figu e 2 b))
he pa ien will be able o upload ideos o him pe o ming
some mo o asks om he UPDRS hi d domain and, i
desi ed, add a desc ip ion o his condi ion a he ime o
eco ding. Ne e heless, in case he pa ien is no able o
eco d a ideo he e is a possibili y o answe ing a 6 ques ion
web o m, om he UPDRS exam [8], simila o he p e ious
sec ion p esen ed. Howe e , in his case, si ua ions such as
emo a es , pos u al emo , s i ness, capabili y o ise
o a chai , pos u al s abili y, gai dis u bances, dyskinesia
du a ion and impai men a e e alua ed. One mo e ime, all
in o ma ion uploaded will be egis e ed in a da abase and
ideos sa ed o a speci ic di ec o y wi hin he se e .
3) Cha : Pa ien s will con inue o ecei e he usual calls
om he nu se call cen e. Howe e , i will be gi en he
possibili y o ha call being made h ough a ideocon e ence
sys em. The e o e he medical s a will be able o isualize
he pa ien while alking, obse e any possible symp oms
he pa ien is ha ing and possibly ask him o pe o m some
mo o exe cises. Addi ionally, possible medica ion adjus -
men s o ad ices will be mo e easily gi en and explained.
Fu he mo e, i will also be possible o he pa ien o lea e a
message and he medical s a will be wa ned h ough email
o he new message.
4) Calenda : The sys em will allow he pa ien s o ecei e
medical e en s om hei physicians, such as appoin men s,
asnwe ing a web o m o upload ideos. Al hough i is no
possible o he pa ien o edi o cancel hese e en s, he
pa ien can add u he e en s o he calenda ela ed o non-
ela ed o PD.
5) Sel -assessmen Dia y: He e he pa ien is expec ed o
upload daily in o ma ion abou dyskinesias episodes, OFF
and ON pe iods, hou s o sleep, missed medica ion. This
sec ion ocus mo e on he du a ion and epe i ion o such
e en s, al hough i he use wishes o p o ide a desc ip ion o
each e en i is also possible. This in o ma ion is impo an o
he medical s a since i helps unde s anding he impai men
imposed by he disease in a daily basis. Fo example, i
pa ien ’s desc ip ion o e en s con inues o be o a low le el
o QoL, hen he medical s a can ge in con ac wi h him
and y o ind a solu ion o imp o e his well being.
B. Hospi al Web In e ace
All use s ela ed o he hospi al will be edi ec ed o he
hospi al web in e ace homepage. This page is composed o
a sideba con aining links o he di e en sec ions such as:
Web o ms’ cha s, Calenda , Cha , Video galle y and Pa ien
Sel -assessmen Dia y. Mo eo e , in o ma ion ela i ely o
pa ien ’s uploads such as messages, ideos, aken web o ms
will be p esen ed.
1) Pa ien Sel -assessmen Dia y: E en s inse ed in he
pa ien ’s dia y will be p esen ed o he use as a esponsi e
imeline (Figu e 2 d)). Each e en will ha e i s own icon
and depending on he se e i y i will ha e a di e en colou .
Fo example, missed medica ion can be p esen ed wi h a ed
colou whe eas dyskinesia e en s can ha e an o ange colou .
Mo eo e , s a is ics conce ning epe i ion and du a ion o
indi idual e en s will exis .
2) Video Galle y: In his sec ion he use will see all
ideos uploaded by he pa ien and hose eco ded, by
medical s a , o he pa ien in he appoin men s. The use
can click on one ideo and see he ideo as well as he de ails
a ached such as eco ding da e and desc ip ion. Mo eo e , i
desi ed can compa e wo ideos, eco ded a di e en da es,
and see he p e ious web o m esul s o each ideo.
3) Web o m’s Cha s: As p e iously e e ed a he end
o each ques ionnai e, all answe s gi en by he pa ien will be
s o ed. This in o ma ion can be la e illus a ed in wo ways:
as a cha , as depic ed in Figu e 2 c), whe e i will be possible
o obse e he inal sco e pe da e when he ques ionnai e
was aken, and as a able o esul s whe e one can see each
choice o each ques ion acco ding o he da e he exam was
done.
4) Calenda and Cha : The cha will ha e he same goal
as he one p esen o he pa ien . He e he use can choose
o each pa ien o call and he e will also be a message
boa d o ade w i en messages. On he o he hand, he
calenda allows o m he medical s a o add, upda e o
dele e disease’s ela ed e en s o a pa ien ’s calenda as well
as hei own.

Fig. 2. Use -In e ace (UI) o he p oposed mul imedia solu ion. In (A) he Non-mo o symp oms web o m is depic ed wi h one o he ques ions asked o
he pa ien and he co esponding answe s. B) Pa ien Video Galle y, whe e pa ien can upload ideos wi h possible desc ip ion, see his uploaded ideos o
i no able o upload one answe a web o m ela ed o mo o capabili ies. C) Web o m’s Cha s, he medical s a can analyse he di e en web o m esul s
pe da e and see he de elopmen o pa ien ’s well being. High esul s indica e low QoL. D) Pa ien Sel -assessmen Dia y, whe e a imeline composed by
he desc ip ion o impo an e en s is illus a ed.
IV. CONCLUSIONS
The p oposed sys em will gi e pa ien ’s a mo e ac i e ole
in he managemen o hei disease and a sense o g ea e
con ol in hei well being. Mo eo e , he medical s a will
be enabled wi h be e knowledge on he pa ien ’s QoL and
wi h he iche in o ma ion will be able o imp o e diagnosis
and ea men , hus imp o ing pa ien ’s QoL. The e o e, i is
he au ho s opinion ha his wo k can ha e a g ea impac
in he managemen o PD. Fu he mo e, due o his ac i
is expec ed a educ ion in he need o ex a appoin men s.
The eliabili y and s eng hs o he pla o m will be es ed
h oughou he yea , using a popula ion o pa ien s being
ollowed a HSJ.
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103–114.
[11] E. Comission, “Communica ion om he commission o he
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Appendix I
Deep B ain S imula ion Su ge y Cou se
a Hospi al São João gi en by Med onic
101