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Development and evaluation of the usefulness, usability, and feasibility of iNNOV breast cancer

Abstract

Background: Despite the efficacy of psychosocial interventions in minimizing psychosocial morbidity in breast cancer survivors (BCSs), intervention delivery across survivorship is limited by physical, organizational, and attitudinal barriers, which contribute to a mental health care treatment gap in cancer settings. Objective: The aim of this study is to develop iNNOV Breast Cancer (iNNOVBC), a guided, internet-delivered, individually tailored, acceptance and commitment therapy–influenced cognitive behavioral intervention program aiming to treat mild to moderate anxiety and depression in BCSs as well as to improve fatigue, insomnia, sexual dysfunction, and health-related quality of life in this group. This study also aims to evaluate the usefulness, usability, and preliminary feasibility of iNNOVBC. Methods: iNNOVBC was developed using a user-centered design approach involving its primary and secondary end users, that is, BCSs (11/24, 46%) and mental health professionals (13/24, 54%). We used mixed methods, namely in-depth semistructured interviews, laboratory-based usability tests, short-term field trials, and surveys, to assess iNNOVBC’s usefulness, usability, and preliminary feasibility among these target users. Descriptive statistics were used to characterize the study sample, evaluate performance data, and assess survey responses. Qualitative data were recorded, transcribed verbatim, and thematically analyzed. Results: Overall, participants considered iNNOVBC highly useful, with most participants reporting on the pertinence of its scope, the digital format, the relevant content, and the appropriate features. However, various usability issues were identified, and participants suggested that the program should be refined by simplifying navigation paths, using a more dynamic color scheme, including more icons and images, displaying information in different formats and versions, and developing smartphone and tablet versions. In addition, participants suggested that tables should be converted into plain textboxes and data visualization dashboards should be included to facilitate the tracking of progress. The possibility of using iNNOVBC in a flexible manner, tailoring it according to BCSs’ changing needs and along the cancer care continuum, was another suggestion that was identified. Conclusions: The study results suggest that iNNOVBC is considered useful by both BCSs and mental health professionals, configuring a promising point-of-need solution to bridge the psychological supportive care gap experienced by BCSs across the survivorship trajectory. We believe that our results may be applicable to other similar programs. However, to fulfill their full supportive role, such programs should be comprehensive, highly usable, and tailorable and must adopt a flexible yet integrated structure capable of evolving in accordance with survivors’ changing needs and the cancer continuum.

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Development and evaluation of the usefulness, usability, and feasibility of iNNOV breast cancer

Author: Mendes-Santos, Cristina,Nunes, Francisco,Weiderpass, Elisabete,Santana, Rui,Andersson, Gerhard
Year: 2022
Source: https://run.unl.pt/bitstream/10362/137845/1/MendesSantos_JMIR_Cancer_2022_8_1.pdf
O iginal Pape
De elopmen and E alua ion o he Use ulness, Usabili y, and
Feasibili y o iNNOV B eas Cance : Mixed Me hods S udy
C is ina Mendes-San os1,2,3,4, PhD; F ancisco Nunes5, PhD; Elisabe e Weide pass6, MSc, MD, PhD; Rui San ana3,4,
PhD; Ge ha d Ande sson7,8,9, PhD
1Depa men o Cul u e and Socie y, Linköping Uni e si y, Linköping, Sweden
2Expe imen al Pa hology and The apeu ics G oup, Po uguese Ins i u e o Oncology, Po o, Po ugal
3Public Heal h Resea ch Cen e, NOVA Na ional School o Public Heal h, Uni e sidade No a de Lisboa, Lisbon, Po ugal
4Comp ehensi e Heal h Resea ch Cen e , Po ugal
5F aunho e Po ugal AICOS, Po o, Po ugal
6In e na ional Agency o Resea ch on Cance , Lyon, F ance
7Depa men o Beha iou al Sciences and Lea ning, Linköping Uni e si y, Linköping, Sweden
8Depa men o Biomedical and Clinical Sciences, Linköping Uni e si y, Linköping, Sweden
9Depa men o Clinical Neu oscience, Psychia y Sec ion, Ka olinska Ins i u e , S ockholm, Sweden
Co esponding Au ho :
C is ina Mendes-San os, PhD
Depa men o Cul u e and Socie y
Linköping Uni e si y
Linköping, 581 83
Sweden
Phone: 46 917890798
Email: [email p o ec ed]
Abs ac
Backg ound: Despi e he e icacy o psychosocial in e en ions in minimizing psychosocial mo bidi y in b eas cance su i o s
(BCSs), in e en ion deli e y ac oss su i o ship is limi ed by physical, o ganiza ional, and a i udinal ba ie s, which con ibu e
o a men al heal h ca e ea men gap in cance se ings.
Objec i e: The aim o his s udy is o de elop iNNOV B eas Cance (iNNOVBC), a guided, in e ne -deli e ed, indi idually
ailo ed, accep ance and commi men he apy–in luenced cogni i e beha io al in e en ion p og am aiming o ea mild o
mode a e anxie y and dep ession in BCSs as well as o imp o e a igue, insomnia, sexual dys unc ion, and heal h- ela ed quali y
o li e in his g oup. This s udy also aims o e alua e he use ulness, usabili y, and p elimina y easibili y o iNNOVBC.
Me hods: iNNOVBC was de eloped using a use -cen e ed design app oach in ol ing i s p ima y and seconda y end use s, ha
is, BCSs (11/24, 46%) and men al heal h p o essionals (13/24, 54%). We used mixed me hods, namely in-dep h semis uc u ed
in e iews, labo a o y-based usabili y es s, sho - e m ield ials, and su eys, o assess iNNOVBC’s use ulness, usabili y, and
p elimina y easibili y among hese a ge use s. Desc ip i e s a is ics we e used o cha ac e ize he s udy sample, e alua e
pe o mance da a, and assess su ey esponses. Quali a i e da a we e eco ded, ansc ibed e ba im, and hema ically analyzed.
Resul s: O e all, pa icipan s conside ed iNNOVBC highly use ul, wi h mos pa icipan s epo ing on he pe inence o i s
scope, he digi al o ma , he ele an con en , and he app op ia e ea u es. Howe e , a ious usabili y issues we e iden i ied,
and pa icipan s sugges ed ha he p og am should be e ined by simpli ying na iga ion pa hs, using a mo e dynamic colo
scheme, including mo e icons and images, displaying in o ma ion in di e en o ma s and e sions, and de eloping sma phone
and able e sions. In addi ion, pa icipan s sugges ed ha ables should be con e ed in o plain ex boxes and da a isualiza ion
dashboa ds should be included o acili a e he acking o p og ess. The possibili y o using iNNOVBC in a lexible manne ,
ailo ing i acco ding o BCSs’changing needs and along he cance ca e con inuum, was ano he sugges ion ha was iden i ied.
Conclusions: The s udy esul s sugges ha iNNOVBC is conside ed use ul by bo h BCSs and men al heal h p o essionals,
con igu ing a p omising poin -o -need solu ion o b idge he psychological suppo i e ca e gap expe ienced by BCSs ac oss he
su i o ship ajec o y. We belie e ha ou esul s may be applicable o o he simila p og ams. Howe e , o ul ill hei ull
suppo i e ole, such p og ams should be comp ehensi e, highly usable, and ailo able and mus adop a lexible ye in eg a ed
s uc u e capable o e ol ing in acco dance wi h su i o s’changing needs and he cance con inuum.
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KEYWORDS
accep ance and commi men he apy; anxie y; b eas cance su i o s; cogni i e beha io al he apy; dep ession; digi al men al
heal h; e-men al heal h; use -cen e ed design; in e ne in e en ions; usabili y; mobile phone
In oduc ion
Backg ound
Since 2020, b eas cance has been he mos diagnosed cance
wo ldwide and he leading cause o cance mo ali y in women.
In Po ugal, as many as 7041 women a e diagnosed pe yea
wi h b eas cance , and in 2020, a o al o 1864 women died
owing o he condi ion [1,2]. Ne e heless, owing o
imp o emen s in ea ly diagnosis, umo molecula
cha ac e iza ion, and inno a i e sys emic ea men s, b eas
cance p ognosis has signi ican ly imp o ed ac oss he globe,
wi h 5-yea su i al a es eaching app oxima ely 90% in
high-income coun ies [3]. In Po ugal, he 5-yea p e alence
o b eas cance was es ima ed a 27,051 in 2020, making b eas
cance su i o s (BCSs) he la ges g oup o cance su i o s
in he coun y [1,2].
In spi e o a posi i e p ognosis, he su i o ship ajec o y is
equen ly cha ac e ized by di icul ies associa ed wi h sequelae
o cance and i s ea men and la e physical and psychosocial
e ec s ha hinde BCSs’heal h- ela ed quali y o li e (HRQoL)
[4]. Anxie y, dep ession [5,6], ea o ecu ence [7], a igue
[8], sleeping p oblems [9], and sexual dys unc ion [10,11] a e
among he mos common p oblems BCSs expe ience ac oss
su i o ship and can mani es up o se e al yea s a e p ima y
ea men comple ion [12].
In he pas decades, se e al in e en ions ha e been de eloped
o minimize psychosocial mo bidi y in BCSs. Recen
me a-analyses demons a ed he e icacy o such in e en ions
in imp o ing a ange o psychosocial ou comes [13,14].
Cogni i e beha io al he apy (CBT) has been iden i ied as he
mos e ec i e in e en ion o ea anxie y and dep ession in
BCSs, o en showing signi ican small- o-mode a e ea men
e ec s in pa ien s wi h hese condi ions [13,14]. O he
psychosocial in e en ions such as psychoeduca ional ea men s
[14], mind ulness-based in e en ions [15], and accep ance and
commi men he apy (ACT) ha e been es ed among BCSs wi h
success as well [16]. ACT, owing o i s model o heal hy
adap a ion o di icul ci cums ances and ansdiagnos ic
app oach, has been appoin ed as pa icula ly use ul in add essing
he high le els o psychological and medical como bidi ies ha
mani es in cance popula ions [17,18]. Reg e ably, he deli e y
o such in e en ions ac oss he su i o ship ajec o y is limi ed
owing o dis ance om heal h ca e se ices, heal h ca e sys em
limi a ions, men al heal h illi e acy, and a i udinal ba ie s, all
o which con ibu e o a men al heal h ca e ea men gap in
cance se ings [19].
In e ne in e en ions—sel -help echnology-enabled
in e en ions ha p o ide synch onous o asynch onous
heal h- ela ed and men al heal h– ela ed assis ance based on
es ablished psycho he apy models [20]—p o ide an oppo uni y
o ul ill he men al heal h ca e gap wi hin oncology and o e
BCSs wi h pa ien -cen e ed suppo a a dis ance. Ne e heless,
despi e in e ne in e en ions’a es ed e icacy [21] in ea ing
a ious men al heal h condi ions and i s po en ial
cos -e ec i eness [22,23], in e ne in e en ions a ge ing cance
su i o s a e scan [24]. Al hough p omising e ec s o such
in e en ions ha e been documen ed conce ning anxie y,
dep ession [25,26], dis ess [27], a igue [28], physical ac i i y
[29], symp om managemen [30], insomnia [31,32], sexual
dys unc ion [33], and quali y o li e [34,35], he o e all bene i
o such in e en ions o BCSs is s ill unclea . Mos s udies in
his domain epo on dissimila in e en ions o p esen high
me hodological he e ogenei y, which makes hei compa ison
di icul and inconsis en [30,36]. Mo eo e , in e en ions’
design p ocesses a e a ely epo ed, and he absence o
e idence-based easoning behind i s de elopmen [36]
con ibu es o a esea ch-p ac ice gap in he in e ne
in e en ions domain, whe ein e idenced-based ea men s
s uggle o be adop ed in ou ine ca e [37]. Ano he cause o
he low up ake o in e ne in e en ions in clinical se ings is
he pe iphe al posi ion end use s a e o en e e ed o du ing
de elopmen [38]. In e en ion p og ams a e equen ly planned
by neglec ing end use s’ pe spec i e (eg, indi idual’s goals,
needs, skills, and con ex s) and esea che s o en ail o in ol e
end use s in he de elopmen p ocess [37,38]. This lack o
human-cen e edness in he de elopmen pa ly explains he high
a i ion a es and poo engagemen o en epo ed in clinical
ials and con igu es a limi a ion ha needs o be add essed o
e ec i ely impac su i o ship suppo i e ca e p o ision
[39,40].
The aim o his s udy is o epo on he de elopmen , use ulness,
usabili y, and p elimina y easibili y o iNNOV B eas Cance
(iNNOVBC), a guided, in e ne -deli e ed, indi idually ailo ed,
ACT-in luenced CBT p og am de eloped o ea mild o
mode a e anxie y and dep ession in BCSs, as well as o imp o e
a igue, insomnia, sexual dys unc ion, and HRQoL in his g oup.
Besides in o ming iNNOVBC’s u he de elopmen and
e inemen , he con ibu ion o his pape esides in he
desc ip ion o men al heal h p o essionals’(MHPs’) and BCSs’
pe spec i es on he use o digi al echnology o suppo cance
su i o s and he design implica ions ha a ise om conside ing
hese.
iNNOVBC O e iew
iNNOVBC (Figu es 1 and 2) is a guided, in e ne -deli e ed,
indi idually ailo ed, ACT-in luenced CBT p og am and was
de eloped wi h a use -cen e ed design app oach [37]. The
p og am was c ea ed o add ess he psychosocial needs o BCSs
ha we e p e iously iden i ied ia li e a u e e iew, namely,
anxie y, dep ession, a igue, insomnia, sexual dys unc ion, and
HRQoL. The in e en ion s uc u e and con en build up on
p io CBT- and ACT-inspi ed in e en ions de eloped by he
Depa men o Beha iou al Sciences and Lea ning a Linköping
Uni e si y, a ge ing o he popula ions [41-45]. The applicable
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p e iously a ailable con en was ansla ed om Swedish and
English o Po uguese and e iewed by ex e nal expe s (ie, an
oncologis , a nu se, a psychologis , and a BCS). Addi ional
con en was de eloped based on pee - e iewed sou ces [46-50],
as well as mixed me hods esea ch conduc ed by he esea ch
eam and in ol ing iNNOVBC’s p ima y and seconda y end
use s [51,52].
iNNOVBC is composed o 10 ea men modules (Mul imedia
Appendix 1), namely, i e manda o y modules (li ing wi h
b eas cance and beyond, dep ession, anxie y, elaxa ion, and
key poin s summa y, and planning o he u u e) and i e
op ional modules (beha io al ac i a ion pa s I and II, sleep
a igue, and in e pe sonal ela ionships, sex, and in imacy), o
be comple ed in 10 weeks. An in oduc o y module p o ides
gene al in o ma ion abou he p og am. Each module is designed
o be comple ed in app oxima ely 60 minu es and includes
w i en ex , images, ideos, audio iles, quizzes, ACT- and
CBT-based exe cises, homewo k assignmen s, and espec i e
wo kshee s. The p og am adop s a ansdiagnos ic s uc u e,
ea u ing psychoeduca ion, accep ance, cogni i e de usion,
connec ing wi h alues, commi ed ac ion, exposu e, beha io al
ac i a ion, and elaxa ion as cen al componen s. Sleep
managemen , ene gy conse a ion, p oblem sol ing, and sensa e
ocusing echniques a e complemen a y componen s o he
p og am. To gua an ee op imal use o he p og am, he s udy
in e en ion was de eloped acco ding o he ollowing
pe suasi e sys em p inciples ca ego ized by Oinas-Kukkonen
and Ha jumaa [53]: esponsi eness, unneling, ailo ing,
pe sonaliza ion, eminde s, and p o essional suppo .
A he onse o he in e en ion, BCSs using he p og am should
ailo hei ea men wi h he suppo o hei assigned he apis
and acco ding o hei baseline assessmen and p e e ences.
Once hey each an ag eemen , he selec ed modules should be
p esc ibed and made a ailable weekly o he BCSs. Then, BCSs
a e p omp ed o comple e he modules in app oxima ely 1 week.
Wi hin 24 hou s o module comple ion, he he apis s assess
he BCSs’ p og ess based on he epo ed ou comes and
de e mine whe he hey should p oceed o he nex module.
When a new module is made a ailable, BCSs ecei e an email
no i ying hem. I no , he apis s should ins uc hem on wha
needs o be comple ed o be able o ad ance o he nex module.
In eg a ed 2-way communica ion ea u es such as email, cha ,
SMS ex messaging, and ideocon e ence suppo he
in e en ion. The p og am is deli e ed ia iTe api, a web-based
ea men pla o m de eloped a Linköping Uni e si y [54].
Figu e 1. The landing page o he iNNOV B eas Cance p og am.
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Figu e 2. The in oduc o y and 10 ea men modules o he iNNOV B eas Cance p og am.
Me hods
S udy Design
Mixed me hods (Figu e 3), namely in-dep h semis uc u ed
in e iews, usabili y es s, sho - e m ield ials, and su eys,
we e combined o ul ill he ollowing speci ic goals: (1)
e alua e iNNOVBC’s use ulness, (2) assess iNNOVBC’s
usabili y, and (3) explo e iNNOVBC’s pe cei ed easibili y and
accep abili y among i s a ge use s. The s udy was app o ed
by he e hical commi ees o Ins i u o Po uguês de Oncologia
do Po o, F ancisco Gen il, EPE; Cen o Hospi ala Uni e si á io
do Po o; Cen o Hospi ala São João; Unidade Local de
saúde–Ma osinhos; Hospi al CUF Po o; O dem dos Psicólogos
Po ugueses; and he Po uguese Da a P o ec ion Commi ee
(app o al numbe : 10727/2017). W i en in o med consen was
ob ained om all pa icipan s.
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Figu e 3. S udy design. BCS: b eas cance su i o ; iNNOVBC: iNNOV B eas Cance ; MHP: men al heal h p o essional.
Sampling and Rec ui men
The s udy a ge ed BCSs and MHPs, who a e iNNOVBC’s
p ima y and seconda y end use s. Eligibili y c i e ia o BCSs
consis ed o women, aged >18 yea s, wi h a his o y o
his ologically con i med b eas cance , who had comple ed
p ima y adju an ea men (excep ho monal he apy), and we e
capable o eading and w i ing in Po uguese. MHPs we e
egis e ed psychologis s o psychia is s, capable o eading and
w i ing in Po uguese. A nonp obabilis ic sample o BCSs and
MHPs was ec ui ed ollowing e e als om he esea che s
and p o essionals wo king a ea men cen e s in Po o
(Po ugal) and ia snowball sampling. Pa icipan s we e
pu posi ely sampled o di e si y in age, academic deg ee, and
digi al echnology p o iciency. A o al o 28 MHPs and 16 BCSs
we e in i ed o pa icipa e in he s udy in pe son, ia email, o
by elephone. O he in i ed indi iduals, 54% (15/28) o he
MHPs and 88% (14/16) o he BCSs ag eed o pa icipa e.
Meaning sa u a ion was used as a s opping c i e ion, which
mean ha new pa icipan s would no be en olled once no el
ieldwo k insigh s s opped changing analysis signi ican ly [55].
Da a collec ion ended a e 87% (13/15) o he MHPs and 69%
(11/16) o he BCSs comple ed he esea ch p o ocol, as meaning
sa u a ion was eached du ing he las in e iews and usabili y
es s.
Da a Collec ion P ocedu es
Da a we e collec ed be ween No embe 2019 and Feb ua y
2020 (ie, be o e he COVID-19 pandemic). Up o 2 o 3
in e iewe s o mode a o s (CMS, Ana Al es, and Elsa Oli ei a)
pa icipa ed in da a collec ion. The esea ch p o ocol included
an explo a o y semis uc u ed in e iew (N=24; ie, 11/24, 46%
BCSs and 13/24, 54% MHPs; Mul imedia Appendix 2), a
labo a o y-based usabili y es (Mul imedia Appendix 3),
ollowed by he comple ion o a sel - epo ed usabili y su ey
[56] (N=24; ie, 11/24, 46% BCSs, and 13/24, 54% MHPs), and
a deb ie ing pos usabili y es in e iew (N=24; ie, 11/24, 46%
BCSs, and 13/24, 54% MHPs; Mul imedia Appendix 4). The
explo a o y in e iew aimed o in es iga e he use ulness o
iNNOVBC and ga he equi emen s o u he e inemen o
he p og am. The usabili y es assessed he pa icipan s’
pe o mance while execu ing a se ies o ep esen a i e
p ede ined asks on dis inc pa s o he pla o m. The
hink-aloud p o ocol was implemen ed o enable pa icipan s
o oice hei hough s and issues [57]. The deb ie ing in e iew
ocused on pa icipan s’ expe ience wi h using he pla o m,
issues hinde ing hei expe ience, and changes o be pe o med
o achie e be e e ec i eness, e iciency, and sa is ac ion wi h
he p og am. These ac i i ies occu ed in pe son a F aunho e
Po ugal–Cen e o Assis i e In o ma ion and Communica ion
Solu ions mee ing ooms. Pa icipan BCSs willing o u he
assess iNNOVBC we e in i ed o pa icipa e in an addi ional
2-week ield ial (8/11, 73% BCSs; Mul imedia Appendix 5)
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mimicking he expe ience o using he p og am, and o ill ou
a su ey h ough he pla o m on he pe cei ed use ulness and
easibili y o he p og am (Mul imedia Appendix 6).
In e iews and usabili y es s we e audio and ideo eco ded,
espec i ely. App oxima ely 36 hou s o audio eco dings and
9 hou s o ideo eco dings we e c ea ed. The a e age du a ion
o p e es in e iews was 49 minu es ( ange 26-81 minu es) o
MHPs and 74 minu es o BCSs ( ange 39-106 minu es).
Usabili y es s we e comple ed on a e age in 20 minu es and
ollowed by 28 minu es ( ange 10-46 minu es) o deb ie ing
in e iews. In e iew eco dings we e ansc ibed e ba im
(CMS and Ana Al es) in pa allel o da a collec ion, using
oT ansc ibe (c ea ed by Ellio Ben ley; a p ojec o he
MuckRock Founda ion) [58]. Usabili y es s we e assessed using
p ede eloped obse a ion g ids and by egis e ing pa icipan s’
oiced ema ks. Da a we e s o ed in a pseudoanonymized o ma
in a secu e passwo d-p o ec ed loca ion.
Measu es
Clinical, Sociodemog aphic, and In e ne -Rela ed
Cha ac e is ics
Backg ound ques ionnai es ailo ed o each a ge g oup
collec ed clinical, sociodemog aphic, and in e ne - ela ed
cha ac e is ics. BCSs we e inqui ed abou age, gende , educa ion
le el, ma i al s a us, occupa ion, p o essional s a us, dis ance
be ween esidence and ea men cen e , ime since diagnosis,
ype o ea men pe o med, su i o ship s a us, p o iciency
using digi al echnology, and expe ience in using digi al men al
heal h (DMH) p og ams. MHPs we e inqui ed abou age, gende ,
educa ion le el, ma i al s a us, occupa ion, p o essional s a us,
wo k con ex , p o essional expe ience (in yea s), heo e ical
o ien a ion, p o iciency in using digi al echnology, and
expe ience in using DMH p og ams.
Use ulness
Semis uc u ed in e iew guides (Mul imedia Appendix 2) we e
de eloped based on a li e a u e e iew o assess pa icipan s’
pe cei ed use ulness o he p og am. The in e iew guides
co e ed he ollowing domains: (1) su i o ship main
challenges, unme ca e needs, and sel -ca e s a egies de eloped
o add ess hose challenges and needs; (2) he p o ision o
psychosocial su i o ship ca e o BCSs and he main ba ie s
impac ing i ; (3) knowledge and use o DMH; and (4) a i udes
owa d DMH p og ams aimed a p o iding su i o ship suppo .
In addi ion, a ques ionnai e de eloped o assess he quali y o
iNNOVBC’s ea men modules was used o his pu pose
(Mul imedia Appendix 6).
Usabili y
We conduc ed usabili y es s and analyzed he pe o mance and
accep ance o he sys em. To assess pe o mance, ask analysis
was conduc ed and he numbe o comple ed asks, e o s, and
assis ances we e eco ded in obse a ion g ids (Mul imedia
Appendix 3). Accep ance was measu ed using he Po uguese
e sion o he Sys em Usabili y Scale [56], whe e a sco e <68
is conside ed below a e age. The deb ie ing in e iews also
in o med abou accep ance and con ibu ed o iden i ying con en
and design changes o be pe o med o imp o e use expe ience
and sa is ac ion (Mul imedia Appendix 4).
Feasibili y
The p elimina y easibili y o he p og am was assessed ia
deb ie ing semis uc u ed in e iews and assessmen
ques ionnai e in iNNOVBC’s ea men modules (Mul imedia
Appendix 6). The pa icipan BCSs who used he sys em a
home also p o ided w i en commen s.
Analysis
A combina ion o quan i a i e and quali a i e me hods was
applied o assess iNNOVBC’s use ulness, usabili y, and
pe cei ed easibili y. Desc ip i e s a is ics, namely, coun s,
pe cen ages, medians, and IQRs, we e used o cha ac e ize he
s udy sample, e alua e pe o mance da a, and assess p e e ence
da a collec ed ia he Sys em Usabili y Scale and he ea men
modules’assessmen ques ionnai e. No e iciency me ics we e
compu ed because he hink-aloud me hod was applied.
Mic oso Excel was used o compu e quan i a i e a iables.
Quali a i e da a esul ing om he in e iews and BCSs’w i en
commen s we e ansc ibed e ba im and analyzed using he
hema ic analysis me hod o B aun and Cla ke [59]. Fi s , a
deduc i e app oach was adop ed based on h ee p ede e mined
high-le el hemes: use ulness, usabili y, and easibili y.
Subsequen ly, induc i e analysis was pe o med on he da a
collec ed wi hin hose hemes, and salien sub hemes we e
coded. Ini ial coding was pe o med by he i s au ho (CM).
Regula discussions we e p omo ed be ween esea che s (CMS
and FN) o discuss esul s and coding ees. Da a pa e ns we e
hen iden i ied and i e a i ely o ganized (CMS and FN) un il
consensus be ween esea che s was achie ed and no addi ional
insigh s we e esul ing om he analysis o he da a. Sc i ene
so wa e [60] was used o suppo he coding p ocess.
Resul s
Pa icipan s’Cha ac e is ics
The sample comp ised 24 pa icipan s (Table 1), including 11
(46%) BCSs and 13 (54%) MHPs. The median age o BCSs
was 48 yea s (IQR 14; minimum 32, maximum 68). Mos
su i o s we e ma ied (7/11, 64%) and college-educa ed (7/11,
64%). App oxima ely 55% (6/11) o he su i o s we e
p o essionally ac i e. Mos BCSs had been ea ed wi h su ge y
(11/11, 100%), chemo he apy (9/11, 82%), adio he apy (8/11,
73%), and ho monal he apy (9/11, 82%). Conside ing he
su i o ship s a us [61], he sample was he e ogeneous,
including pa icipan s a acu e (2/11, 18%), ex ended (3/11,
27%), and pe manen (6/11, 55%) su i o ship s ages. No
pa icipan had p e ious expe ience in using DMH p og ams,
bu he majo i y epo ed medium (4/11, 36%) o s ong (5/11,
45%) skills in using digi al echnology.
The subsample o MHPs was composed o 15% (2/13)
psychia is s and 85% (11/13) clinical psychologis s. Mos
p o essionals we e emale (11/13, 85%), and hei median age
was 35 yea s (IQR 11; minimum 25, maximum 56). The median
o MHPs’ p o essional expe ience was 11 yea s (IQR 11).
Mo eo e , 92% (12/13) o p o essionals we e ac i e, and 30%
(4/13) wo ked in psycho-oncology se ices. App oxima ely
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hal o ou sample (7/13, 54%) held a CBT o ien a ion.
Conside ing pa icipan s’p o iciency in using digi al echnology,
mos p o essionals (11/13, 85%) classi ied hei skills as
medium. App oxima ely hal o p o essionals (7/13, 54%)
epo ed p e ious expe ience in using DMH p og ams.
Table 1. Pa icipan s’cha ac e is ics (N=24).
BCSb(n=11)MHPa(n=13)Va iables
Sex, n (%)
11 (100)11 (85)Female
0 (0)2 (15)Male
Age (yea s), n (%)
0 (0)3 (23)23-30
4 (36)7 (54)31-40
4 (36)2 (15)41-50
2 (18)1 (8)51-60
1 (9)0 (0)61-70
Highes academic deg ee, n (%)
2 (18)0 (0)Basic deg ee (≤9 school yea s)
2 (18)0 (0)Seconda y deg ee (12 school yea s)
7 (64)13 (100)Uni e si y deg ee
Sel - epo ed p o iciency in using digi al echnology, n (%)
2 (18)1 (8)Poo
4 (36)11 (85)Medium
5 (45)1 (8)S ong
Sel - epo ed use o digi al men al heal h, n (%)
11 (100)6 (46)None
0 (0)4 (31)Occasional
0 (0)3 (23)Regula
aMHP: men al heal h p o essional.
bBCS: b eas cance su i o .
Use ulness
iNNOVBC’s pe cei ed use ulness was assessed du ing he
in e iews conduc ed be o e and a e he usabili y es s and by
su eying ield ial pa icipan s on he use ulness and adequacy
o he p og am’s modules. Du ing he ield ials, he con en
o he modules li ing wi h b eas cance and beyond (4/11,
36%), anxie y (1/11, 9%), elaxa ion (1/11, 9%), sleep (1/11,
9%), and a igue (1/11, 9%) we e app aised, wi h all being a ed
wi h 5 (ou o 5) s a s by BCSs e alua ing i . O e all,
pa icipan s ound he p og am’s app oach, con en , and ea u es
as highly ele an and use ul. BCSs classi ied he con en o
he modules as e y use ul (3/8, 36%) o ex emely use ul (5/8,
63%) and e y adequa e (3/8, 36%) o ex emely adequa e (4/8,
50%) in add essing hei di icul ies and needs. Only 13% (1/8)
o he pa icipan s epo ed ha he elaxa ion module was
nei he adequa e no inadequa e o he needs. All su i o s (8/8,
100%) epo ed ha hey would ecommend he modules o a
iend o amily membe going h ough he same condi ion.
Conside ing he ole iNNOVBC could play in BCSs suppo i e
ca e, bo h su i o s and p o essionals conside ed iNNOVBC
could ha e a signi ican impac in suppo ing BCSs h oughou
he cance con inuum:
The e we e a lo o doub s, e e s, discom o s,
disquie udes... he e s ill a e...and i I had his ype o
esou ce, I could ha e used i ins ead o googling o
looking in o pa ien g oups, o some kind o
answe ...Because you do eel he need o go o o ums
and ask, does anyone eel like his? Wha ha e you
done? And i he e we e a pla o m like his, he ype
o suppo p o ided would be di e en , mo e c edible
and app op ia e. [BCS11]
Simila o BCS11, mos pa icipan s alued he possibili y o
accessing “ us wo hy” (BCS6) sel -ca e in o ma ion p o ided
“any ime, anywhe e” (BCS7) ia iNNOVBC. The in e iewed
BCSs had sea ched on he web o in o ma ion on ea men s’
ad e se e en s, p ac ical s a egies, and emo ional challenges
hey we e aced wi h, bu hei sea ches we e leng hy and
equi ed hem o assess he quali y o in o ma ion hey we e
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p esen ed wi h. Bo h BCSs and MHPs conside ed ha ha ing
“easy access o e idence-based eady o use psycho-educa ional
con en ” (MHP10) could help su i o s be e manage hei
condi ion and p oblems.
Acco ding o he pa icipan s, he su i o ship ajec o y is
cha ac e ized by many biopsychosocial challenges ha deeply
impac su i o s’ well-being. Se e al pa icipan s desc ibed
he pe asi e and long-las ing impac ha ea men ’s ad e se
e en s o sequelae had on hei physical and men al heal h,
unde lining he impo ance o ecei ing accu a e and
comp ehensi e in o ma ion abou i . E ec s such as alopecia,
onycholysis, pain, menopausal symp oms, a igue,
ca dio oxici y, lymphedema, os eopo osis, in e ili y, and
memo y loss we e o en discussed by in e iewees as key
in o ma ion poin s o add ess in a nuanced and dynamic manne .
Du ing he cou se o ea men , a ious su i o s ecei ed lye s
and bookle s abou ea men s’ ad e se e ec s, bu mos
complained abou hei unappealing design and low in elligibili y
and ocus on he ac i e ea men s age, he e o e ailing o
p o ide a con inuous pe spec i e on i s managemen a e
ea men comple ion. The ac ha iNNOVBC app oached
many o hose hemes “in a ch onological way” (BCS1) was
app ecia ed by a ious BCSs because i enabled hem o p epa e
and cope wi h i in he long e m.
The impac o cance and i s ea men s on su i o s’emo ional
heal h was ano he ma e o conce n. Bo h MHPs and BCSs
unde lined he impo ance o p o iding psychological suppo
o BCSs h oughou he cance con inuum, pa icula ly du ing
he ansi ion om ac i e ea men o ollow-up ca e:
Ge ing psychological suppo is e y impo an a
all s ages...a he diagnosis, du ing ea men and
a e ea men ...People a e no awa e o his, hey
end o say “Ah, ha ’s o e now!” and expec us o
e u n o whom we used o be...Bu ha ’s no
possible...you s ill need suppo . This eels almos
like...a pos - auma ic si ua ion...and by saying ha
i ’s almos like hey’ e aking away you legi imacy
o eel he pain, so i can eel e y isola ing o c oss
ha pa h. [BCS2]
I ’s an ab up shi om being ex emely ca ed o ,
om ha ing ha uncondi ional suppo du ing chemo
o s opped being ca ed o ...As soon as you hai
s a s o g ow, e e yone assumes ha e e y hing is
ine. Bu i ’s no . I will ne e be able o say again ha
I’m ine. I’m no healed, I’m ull o ea s, anxie y, and
so ow. So...i was ex emely ha d o me o deal wi h
ha because I el abandoned...people had pulled he
ug ou om unde me. [BCS7]
Simila o BCS2 and BCS7, a ious pa icipan s discussed he
expe ience o eeling in dis ess and unsuppo ed a e inishing
he p ima y ea men . P oblems such as “dealing wi h low
mood” (BCS11), “ eeling anxious all he ime” (BCS2), “ ea ing
ha cance had e u ned” (BCS8), o ea o “dying” (BCS9)
we e common, o en impac ing BCSs’ sleep and in e pe sonal
ela ionships. Di icul ies in adap ing o a “sca ed body image”
(BCS5) we e also p e alen in in e iewees’ na a i es and
a ious pa icipan s epo ed on he p o ound impac i had on
hei sel -es eem, sexuali y, and in ima e ela ionships:
Losing my b eas shook my sel -es eem, i shook
e e y hing...i ’s ha d o li e wi hou i , I’m a woman.
I...I’m incapable o being naked in on o my
husband. I eel emba assed...I’m no able o hug him
anymo e. I’m a aid he eels ha i ’s no my b eas ,
ha i isn’ eal. I sleep...wi hou he p os hesis, bu
I always y o sleep wi h my back o him and when I
ealize I’m acing him, I u n o e igh away...I’m
a aid ha i he sees me, he migh lose his in e es in
me, ha he s ops desi ing me. ...We s ill ha e sex bu
i ’s no he same. I’m always a aid ha he ouches
whe e he’s no supposed o...I do no lean agains
him...I a oid his ouch. I ’s di icul and...I know ha
he e a e women ha deal wi h his well, bu I...I do
no . [BCS9]
Simila o BCS9, a ious pa icipan s alked abou no being
able o adap o hei changed sel , eeling like a ake e sion
o hemsel es, incapable o es o ing los in imacies, and isola ed
by he “ abu cance had become” (BCS2) in hei inne ci cles.
Coping wi h such p oblems was highly demanding, and many
s uggled o discuss such opics wi h iends, amily, and
p o essionals owing o hei sensi i e na u e. Thus, many
in e iewees app ecia ed he “asse i eness o he hemes”
(BCS6) explo ed a iNNOVBC and he possibili y o ecei ing
p o essional suppo a a dis ance o wi hou ace- o- ace
con ac :
I ’s impo an o ha e suppo bu i ’s uncom o able
o alk abou hese issues ace- o- ace...Maybe h ough
his pla o m, i could be easie ...I belie e I could eel
mo e com o able o ask some ques ions i I knew his
was anonymous, i I didn’ ha e o iden i y me...I
belie e i would be much easie o app oach in ima e
opics ia cha o e-mail han in-pe son. [BCS3]
Pa icipan s such as BCS3 app ecia ed he ac ha iNNOVBC
allowed di ec communica ion be ween MHPs and BCSs. Bo h
p o essionals and su i o s conside ed ha ing cha , email, and
ideocon e ence communica ion al e na i es o be help ul. By
o e ing synch onous and asynch onous communica ion
channels associa ed wi h di e en deg ees o exposu e,
pa icipan s conside ed ha iNNOVBC “could p omo e
su i o s’ sel -disclosu e” (MHP6) and acili a e he “ imely
discussion” (MHP4) o sensi i e opics, ul ima ely, “bene i ing
he he apeu ic p ocess” (MHP12). They also saw ad an ages
in he possibili y o au oma ically sending psychoeduca ional
con en and scheduling and no i ying BCSs abou asks and
ques ionnai es o be comple ed along he implemen a ion o he
p og am:
The unc ionali ies a e well hough and he ac ha
e e y hing is in eg a ed is awesome... his combines
a modula ea men app oach wi h ideocon e ence
and cha ...i allows you o ake no es...and he
ins umen s a e embedded...Tha ’s awesome and
exac ly wha I need in my p ac ice! [MHP5]
The ac ha iNNOVBC combines e idence-based con en wi h
communica ion, moni o ing, and documen a ion ea u es was
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p aised by a ious p o essionals. The in e iewed MHPs
conside ed ha i could educe he ime and e o hey need o
in es in inding, p epa ing, and assessing ma e ials, enabling
hem o wo k mo e e icien ly. iNNOVBC was also conside ed
use ul o p omo e “con inui y o he ela ionship es ablished
be ween he he apis and he clien ” (MHP7) beyond
appoin men s. Mos impo an ly, by doing so, iNNOVBC could
con igu e a poin -o -need se ice ha could suppo BCSs along
he su i o ship ajec o y. Ne e heless, i is impo an o say
ha iNNOVBC’s use ulness could be comp omised by i s “lack
o in ui i eness” (MHP9).
Usabili y
Bo h he quan i a i e and quali a i e da a collec ed du ing he
usabili y es s and in e iews iden i ied design and unc ionali y
issues ha could be imp o ed o enable mo e e ec i e and
e icien use o iNNOVBC and inc ease use s’sa is ac ion wi h
he p og am. In gene al, pa icipan s’e ec i eness, as measu ed
by comple ion a es, was high in bo h g oups ( ange 69.2-100;
Tables 2 and 3), bu he Sys em Usabili y Scale median sco e
was 65 (IQR 35) o BCSs and 47.5 (IQR 25) o MHPs, which
may be conside ed below a e age in e ms o usabili y. These
esul s a e aligned wi h he usabili y issues iden i ied du ing
he usabili y es s.
Table 2. MHPalabo a o y-based usabili y es esul s.
Assis ances,
mean (SD)
E o , mean
(SD)Task pe o mance, %Task g oups and asks
A: Log-in
0.1 (0.3)0.2 (0.4)100
1. Log in o he iNNOVBCb
B: No i ica ions
0.4 (0.6)0.8 (1.2)84.62. Check no i ica ions
0.7 (0.8)2.3 (2.6)1003. Comply wi h he no i ica ions’ins uc ions by accessing he pa ien ’s ile
C: T ea men p esc ip ion
0.7 (1.1)3.2 (5.1)1004. Click on he pa ien ’s link o sea ch o he pa ien
0.2 (0.4)1.1 (1.2)1005. Check he modules p esc ibed o he pa ien
0.1 (0.3)0.6 (1.1)1006. Assign he sleep module o he pa ien
0.3 (0.8)0.4 (0.7)69.27. Send a no i ica ion o he pa ien
0.2 (0.4)0.1 (0.3)1008. Sa e he p e ious p ocedu e
1 (1.3)3.2 (6.6)1009. Check he a ailable clinical ials
0.4 (1.1)0.6 (1.3)10010. P esc ibe iNNOVBC o he pa ien and schedule he onse o he ea men
0.1 (0.3)0 (0)10011. Sa e he p e ious p ocedu e
D: T ea men p og ess assessmen
1.1 (1.2)3.8 (5.1)10012. Send eedback o he pa ien abou he homewo k assignmen
0.4 (0.7)0.7 (1.4)10013. Access he pa ien ’s ile
1.4 (1.4)3.8 (3.0)10014. Click on ques ionnai es
0.4 (0.8)1.6 (3.4)10015. Check he ques ionnai es a ailable o p esc ibe
0.6 (0.8)1.5 (2.4)10016. Assign he weekly ques ionnai e o he pa ien
0 (0)0 (0)10017. Sa e he p e ious p ocedu e
E: Con e sa ions
0.5 (0.6)1.6 (2.1)10018. W i e an email o he pa ien
0 (0)0 (0)10019. Send he email
0 (0)1.5 (2.8)10020. S a a cha con e sa ion wi h he pa ien
0.1 (0.4)0.1 (0.3)10021. S a a ideocon e ence appoin men wi h he pa ien
0.8 (1.2)4.4 (5.2)10022. Upda e he pa ien 's clinical dia y
0.1 (0.3)0.6 (0.8)10023. Schedule he nex appoin men and se an ala m
aMHP: men al heal h p o essional.
biNNOVBC: iNNOV B eas Cance .
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[DOCX File , 24 KB-Mul imedia Appendix 2]
Mul imedia Appendix 3
B eas cance su i o s’and men al heal h p o essionals’iNNOV B eas Cance usabili y es p o ocol and obse a ion ables.
[DOCX File , 35 KB-Mul imedia Appendix 3]
Mul imedia Appendix 4
B eas cance su i o s’and men al heal h p o essionals’deb ie ing in e iew sc ip s.
[DOCX File , 18 KB-Mul imedia Appendix 4]
Mul imedia Appendix 5
Field ial p o ocol.
[DOCX File , 14 KB-Mul imedia Appendix 5]
Mul imedia Appendix 6
Use ulness and easibili y ques ionnai e.
[DOCX File , 19 KB-Mul imedia Appendix 6]
Mul imedia Appendix 7
Iden i ied usabili y issues.
[DOCX File , 32 KB-Mul imedia Appendix 7]
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Abb e ia ions
ACT: accep ance and commi men he apy
BCS: b eas cance su i o
CBT: cogni i e beha io al he apy
DMH: digi al men al heal h
HRQoL: heal h- ela ed quali y o li e
iNNOVBC: iNNOV B eas Cance
MHP: men al heal h p o essional
Edi ed by A Ma agani; submi ed 12.09.21; pee - e iewed by M P i cha d, T Cai; commen s o au ho 05.01.22; e ised e sion
ecei ed 07.01.22; accep ed 12.01.22; published 15.02.22
Please ci e as:
Mendes-San os C, Nunes F, Weide pass E, San ana R, Ande sson G
De elopmen and E alua ion o he Use ulness, Usabili y, and Feasibili y o iNNOV B eas Cance : Mixed Me hods S udy
JMIR Cance 2022;8(1):e33550
URL: h ps://cance .jmi .o g/2022/1/e33550
doi: 10.2196/33550
PMID:
©C is ina Mendes-San os, F ancisco Nunes, Elisabe e Weide pass, Rui San ana, Ge ha d Ande sson. O iginally published in
JMIR Cance (h ps://cance .jmi .o g), 15.02.2022. This is an open-access a icle dis ibu ed unde he e ms o he C ea i e
Commons A ibu ion License (h ps://c ea i ecommons.o g/licenses/by/4.0/), which pe mi s un es ic ed use, dis ibu ion, and
ep oduc ion in any medium, p o ided he o iginal wo k, i s published in JMIR Cance , is p ope ly ci ed. The comple e
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