Berichterstattung: Ergebnisse COSS Pilotstudie1
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Berichterstattung:
Ergebnisse COSS Pilotstudie1
Autoren/innen: Franziska Schmidt, Jörg Haslbeck, Karin Ribi, Corinne Urech, Manuela Eicher
Was ist Selbstmanagementförderung bei Frauen mit Brustkrebs und
warum ist es wichtig?
Um Frauen mit Brustkrebs in der Schweiz dabei zu unterstützen, ihre körperliche und
psychischen Symptome (z.B. Fatigue, Angst vor Metastasen oder einer Neuerkrankung, Umgang
mit Ungewissheit) bewältigen zu können, wurde im Rahmen der COSS Pilotstudie von 2016-2017
ein 7-wöchiges interaktives Selbstmanagementprogramm entwickelt (CTS-BC-CH2)(1).
Besonders an diesem CTS-BC-CH Programm ist, dass es von zwei geschulten ehemaligen
Brustkrebspatinnen (sogenannten «Peers) anhand eines Kursbuches geleitet wird. Dieser
sogenannte «peer-led» Ansatz ermöglicht, das Verhalten anderer zu beobachten (sogenanntes
«role modeling»), was die Überzeugung, dass man sein Verhalten ändern kann verstärkt (2) und
das eigene Gesundheitsverhalten positiv beeinflusst (3). Das Programm wurde im Rahmen der
Pilotstudie in Kleingruppen mit 8-12 Frauen mit Brustkrebs durchgeführt. Details zum Programm
sind im Anhang A ersichtlich.
Was bedeutet eigentlich Selbstmanagement? Es bedeutet, persönliche Strategien und Wege zu
entwickeln, sein Leben nach eigenen Wünschen, Vorstellungen und Bedürfnissen zu gestalten
und gleichzeitig den Herausforderungen zu begegnen, die eine chronische Krankheit oder
Krebserkrankung mit sich bringt – ob jemand nun selbst erkrankt oder indirekt betroffen ist (4).
Wie wurde das brustkrebsspezifische Programm getestet?
Zwischen Dezember 2018 und August 2019 wurde das neu entwickelte brustkrebsspezifische
Programm in zwei Schweizer Brustzentren eingeführt und getestet. In einer Pilotstudie wurde
dann geprüft, ob das Angebot praktisch umgesetzt werden kann (also machbar ist) und es erste
Hinweise auf die Wirksamkeit des Programms gibt. Konkret wurde getestet, ob das Programm
das Selbstmanagement und die Symptombelastung von Brustkrebspatientinnen verändert. Um
dies zu untersuchen, wurden zwei Gruppen von Brustkrebspatientinnen fünf Monate nach
Studienbeginn miteinander verglichen: 20 Frauen in der Interventionsgruppe (IG) haben am 7-
wöchigen CTS-BC-CH Programm teilgenommen, 18 Frauen in der Kontrollgruppe nahmen nicht
am Programm teil, sie erhielten die übliche Versorgung (=usual care).
Untersucht wurde auch, ob sich durch die Einführung des CTS-BC-CH Programms in einem
Brustzentrum die Selbstmanagementförderung der Breast (cancer) care nurses (BCNs)
1 COSS steht für «Co-creating and testing the reach and preliminary efficacy of an integrated peer-to-peer
self-management program for breast cancer survivors in Switzerland».
2 Cancer Thriving and Surviving Program for Breast Cancer Survivors in Switzerland
1
veränderten. Auf den folgenden Seiten werden die wichtigsten Resultate dieser Testung
dargestellt3.
Wie umsetzbar ist das Angebot (Machbarkeit)?
Eine wichtige Frage ist, wie viele und welche Frauen am Selbstmanagementprogramm
teilnahmen bzw. sich gegen eine Teilnahme entschlossen (Erreichbarkeit).
In den zwei Brustzentren wurden insgesamt 95
Brustkrebspatientinnen geprüft (gescreent), ob sie am CTS-BC-CH
teilnehmen können. Von 95 waren 68 Patientinnen geeignet
(71%) und wurden gefragt ob sie am Programm teilnehmen.
möchten.
Von den 68 angefragten Patientinnen, haben 20 zugesagt, dass
sie am Programm teilnehmen möchten (29%
Teilnehmendenrate). Gründe waren v. a., dass sie kein
Interesse oder keine Zeit hatten, die Sprache oder der
Anfahrtsweg.
Von den 20 teilnehmenden Frauen haben 15 das
siebenwöchige Programm beendet (75%).
Warum haben fünf Teilnehmende das Programm abgebrochen?
Das Programm war zu strukturiert und nicht flexibel genug
Es wurde mehr Raum für spontane Gespräche erwartet
Wöchentliche zu erstellenden Handlungspläne waren zu prominent
Der Gesundheitszustand hat sich verschlechtert, die Teilnehmenden beschrieben, dass sie
schon eigene Strategien entwickelt hatten um mit der Erkrankung umzugehen und die
Teilnahme am Programm rief negative Krankheitserfahrungen hervor
Welche Erfahrungen haben die Kursleitungen gemacht?
Grundsätzlich werden die Themen Selbstmanagement und Selbstmanagement-Förderung
durch die Kursleitungen als ein wichtiges, bisher zu wenig bekanntes Thema eingeschätzt,
welches vermehrt vermittelt werden sollte.
Dass der Kurs nur durch «Peers» (geschulte ehemalige Brustkrebspatientinnen) geleitet
wurde, war zwar für den Erfahrungsaustausch und das Lernen am Modell wertvoll. Auf der
anderen Seite war es aber auch eine (zu) grosse Herausforderung, besonders in Bezug auf die
Gruppendynamik. Den Peer-Kursleitungen haben didaktische Fertigkeiten gefehlt, um z.B.
mit herausfordernden Situationen umgehen zu können, was das Leiten des Kurses
erschwerte.
Zur Unterstützung und Entlastung der Peer-Kursleitungen, wurde empfohlen, dass das
Programm nicht nur durch «Peers» geleitet werden sollte, sondern gemeinsam mit einer
Fachperson, z.B. einer BCN.
Für die Kursleitungen war es teilweise anspruchsvoll, belastend und zeitlich aufwändig, die
Kurse vor-und nachzubereiten. Pro Kurstag waren etwa 3 Stunden zusätzlich zur
Durchführung des eigentlichen Kurses (bis zu 2.5 Stunden) nötig.
3Die vollständigen und detaillierten Resultate können bei Manuela Eicher unter manuela.eicher@chuv.ch
nachgefragt werden.
2 Kritisiert wurde auch, dass das Kurshandbuch in Schriftdeutsch verfasst ist, der Kurs aber in
Schweizerdeutsch durchgeführt wurde. Deswegen haben die Kursleitungen Sätze aufwändig
umformuliert.
Die Kursleitungen empfanden das gesamte Programm zu strukturiert und sie hätten sich
mehr Flexibilität beim Durchführen des Programmes gewünscht, um auf Bedürfnisse der
Teilnehmenden eingehen zu können.
Konnten die teilnehmenden Frauen vom Kurs profitieren (vorläufige
Wirksamkeit)?
Hat sich das Selbstmanagement der Frauen nach dem Kurs verbessert?
Da die Frauen sowohl in der Interventions-, wie auch in der Kontrollgruppe (IG und KG) bereits
bei Studienbeginn über ein gutes bis sehr gutes Selbstmanagement verfügten, gab es nicht mehr
viel «Raum», um ihr Selbstmanagement noch weiter zu verbessern. Es liessen sich keine klaren
positiven Effekte auf das Selbstmanagement bei den Frauen beobachten, die am Programm
teilgenommen haben.
Nachfolgend sind die wichtigsten Ergebnisse zu den untersuchten Effekten dargestellt:
Selbstmanagementfähigkeiten
Von den 20 Frauen, die am Programm teilgenommen haben, gaben 4 Frauen (20%) an,
dass sich ihre Selbstmanagementfähigkeiten signifikant verbessert hätten, gleichzeitig
berichtete aber auch eine Frau (5%) über schlechtere Selbstmanagementfähigkeiten.
Auch bei 2 Frauen, welche in der Kontrollgruppe waren (11%) liess sich eine Verbessrung
der Selbstmanagementfähigkeiten beobachten.
Fähigkeiten, die positiven Aspekte von sozialer Unterstützung zu nutzen
Nach der Teilnahme am Programm gaben 2 Frauen (10%) in der IG an, dass sich ihre
Fähigkeiten verbessert hätten, die positiven Aspekte von sozialen Unterstützung zu
nutzen. Gleichzeitig beobachteten wir aber auch bei 2 Frauen (10%) nach Teilnahme am
Programm eine Verschlechterung dieser Fähigkeiten. In der Kontrollgruppe war dies bei
einer Frau der Fall (6%).
Fähigkeiten zur Bewältigung von emotionaler Belastung und zum Zurechtfinden im
Gesundheitswesen
Von den 20 Frauen, die am Programm teilgenommen haben, liess sich bei keiner Frau
(0%) eine Veränderung im Hinblick auf die Bewältigung von emotionaler Belastung und
zum Zurechtfinden im Gesundheitswesen feststellen. Eine Frau in der Kontrollgruppe
(6%) zeigte bessere Fähigkeiten zur Bewältigung von emotionaler Belastung im Verlauf.
Konnte durch die Teilnahme auch die Symptombelastung gelindert werden?
Die Frauen in beiden Gruppen (=Kontroll- und Interventionsgruppe) hatten bereits bei
Studienbeginn eine tiefe Symptombelastung; auch hier gab es entsprechend wenig Raum für
Verbesserung. Vergleichbar mit unseren Resultaten zum Selbstmanagement (siehe oben) liess
sich auch bei der Symptombelastung kein Effekt feststellen (nachfolgend sind dazu die
wichtigsten Symptome aufgeführt):
Von den 20 Frauen, die am Programm teilnahmen gaben 30% eine geringere Belastung bei
muskelskelettalen Schmerzen, 25% bei Gewichtsproblemen und 25% bei Hitzewallungen an.
Gleichzeitig zeigte sich bei einigen Frauen aber auch eine grössere Belastung bei diesen
3Symptomen: 15% bei muskelskelettale Schmerzen, 25% bei Gewichtsproblemen und 15% bei
Hitzewallungen.
Haben die Breast (cancer) care nurses (BCNs) ihre Tätigkeiten zur Unterstützung
des Selbstmanagements verändert?
Die BCNs beurteilten ihre Tätigkeiten zur Unterstützung des Selbstmanagements vor und nach
dem Durchführen des Programms als hoch. Daher scheinen die BCNs durch die Einführung des
Programms in die Brustzentren ihre Tätigkeiten zur Selbstmanagementförderung nicht
verändert zu haben.
4Was bedeuten die Ergebnisse für die Zukunft des
brustkrebsspezifischen Selbstmanagementprogramms?
Unsere Ergebnisse zeigen keinen klaren Nutzen für die Frauen, die am Programm teilgenommen
haben, gegenüber denjenigen Frauen, die die übliche Versorgung erhielten. Entgegen unserer
Annahme, ist das im Projekt entwickelte brustkrebsspezifische Selbstmanagement-Programm
also im Hinblick auf ein verbessertes Selbstmanagement und eine verbesserte
Symptombelastung in der eingeschlossenen Patientengruppe nicht wirksam.
Die Aussagen der Frauen, die die Teilnahme frühzeitig beendet haben, jene der Kursleitungen und
der BCN zeigen zudem, dass das Programm in der momentanen Form auch nicht gut
umsetzbar/machbar ist. Es ist daher erforderlich das Programm sowohl inhaltlich als auch
strukturell anzupassen und auf eine Zielgruppe zuzuschneiden, die einen höheren Bedarf an
Selbstmanagementförderung hat.
Als eine mögliche alternative Form des Programms wurde mit den Studienteilnehmerinnen die
Idee eines modularen Angebots diskutiert. Dies sollte individueller abgestimmt auf die
spezifischen Bedürfnisse von Brustkrebspatientinnen sein und nicht allein durch Patientinnen,
sondern im Team mit BCNs oder weiteren Gesundheitsfachpersonen angeboten werden. Mit
anderen Worten: die BCNs würde geeignete Brustkrebspatientinnen bereits während der
Behandlung auf einzelne Inhalte (z.B. Umgang mit Fatigue, Kommunikation, Brustkrebs und
körperliche Veränderungen) aufmerksam machen und dazu einladen. Pro Modul könnten sich
interessierte Patientinnen zu einer Gruppe zusammenfinden. In einem regelmässigen Rhythmus
könnten diese Module dann im Tandem bestehend aus einer Peer-Kursleitung und einer BCN
geleitet/angeboten werden.
Als Referenzprojekt der National Strategie gegen Krebs 2014-2020 (5) könnte dieses modulare
Programm dann auch über kantonale Krebsligen in der Deutschschweiz angeboten werden, um
weiteren Frauen den Zugang zu ermöglichen.
Finanzielle Unterstützung
Die COSS Pilotstudie wurde finanziell von der Krebsforschung Schweiz (grant number: KLS-3823-
02-2016) und der Lindenhofstiftung Bern [grant number: 16-09-F] unterstützt; und ist ein
Referenzprojekt der nationalen Strategie gegen Krebs (NSK) (2014 – 2020) (5).
Dank
Die COSS Pilotstudie konnte dank dem grossen Einsatz der teilnehmenden Patientinnen,
Kursleiterinnen, Mastertrainerinnen, Breast (cancer) care nurses und den Brustzentren
durchgeführt werden. Für die gute Zusammenarbeit möchten wir uns hiermit ganz herzlich
bedanken. Ohne deren Teilnahmebereitschaft wäre es nicht möglich gewesen, diese Studie zu
realisieren. Ihre Mitarbeit ermöglichte es, wertvolle Erkenntnisse zum Thema
Selbstmanagement und Selbstmanagementförderung bei Frauen mit Brustkrebs zu gewinnen.
Bedanken möchten wir uns auch bei der Krebsforschung Schweiz und der Lindenhofstiftung
Bern für die finanzielle Unterstützung.
5Referenzen
1. Schmidt F, Ribi K, Haslbeck J, Urech C, Holm K, Eicher M. Adapting a peer-led self-
management program for breast cancer survivors in Switzerland using a co-creative approach.
Patient education and counseling. 2020.
2. Campbell HS, Phaneuf MR, Deane K. Cancer peer support programs-do they work? Patient
Educ Couns. 2004;55(1):3-15.
3. Foster C, Breckons M, Cotterell P, Barbosa D, Calman L, Corner J, et al. Cancer survivors’
self-efficacy to self-manage in the year following primary treatment. Journal of Cancer
Survivorship. 2015;9(1):11-9.
4. Lorig K, Holman H, Sobel DS, Laurent D, Gonzales VM, Minor M. Gesund und aktiv mit
chronischer Krankheit leben. Zurich: Careum; 2013.
5. Gasser C, Röthlisberger M, Kramis K, Lenz F. Weiterführung Nationale Strategie gegen
Krebs 2017-2020. 2017.
6Anhang
A. Inhalte Brustkrebs Programm
B. Wissenschaftliche Publikation zur Entwicklung des CTS-BC-CH (Englisch)
7Anhang A.
Tabelle 1.
Inhalte Brustkrebs Programm
Kurstag 1 Kurstag 2 Kurstag 3 Kurstag 4 Kurstag 5 Kurstag 6 Kurstag 7
Einführung in den Rückmeldung und Rückmeldung und Rückmeldung und Rückmeldung und Rückmeldung und Rückmeldung und
Kurs Probleme lösen Probleme lösen Probleme lösen Probleme lösen Probleme lösen Probleme lösen
Vorstellungs- Mit schwierigen Mit Schmerzen Brustkrebs und Sich bewegen Brustkrebs und Brustkrebs und
runde Gefühlen umgehen umgehen körperliche Beziehungen mein
Veränderungen (Arbeits)leben
Verbindung von Erholsam schlafen Mit Ungewissheit Gesund essen Gewicht kontrollieren Entspannung: Körper- Frau-Sein
Körper und Geist/ leben Scan
Ablenkung
Mit Fatigue umgehen Während und nach Entscheidungen Miteinander reden Informierte Mit Fachpersonen und Entspannung:
und Hilfe erhalten der treffen Entscheidungen zu Organisationen Fantasiereise
Brustkrebstherapie Behandlungen treffen zusammenarbeiten
körperlich aktiv sein
Einführung in Erstellen eines Die eigene Probleme lösen Mit Gefühlen von Erstellen eines
Handlungspläne Handlungsplans Gesundheits- Niedergeschlagenheit Handlungsplans
versorgung planen umgehen
Abschluss Abschluss Erstellen eines Erstellen eines Positives Denken Abschluss Rückblick und
Handlungsplans Handlungsplans Handlungsplan für
die Zukunft
erstellen
Abschluss Abschluss Erstellen eines Abschluss
Handlungsplans
Abschluss
8Anhang B.
Wissenschaftliche Publikation zur Entwicklung des CTS-BC-CH (Englisch)
9Patient Education and Counseling 103 (2020) 1780–1789
Contents lists available at ScienceDirect
Patient Education and Counseling
journal homepage: www.elsevier.com/locate/pateducou
Adapting a peer-led self-management program for breast cancer
survivors in Switzerland using a co-creative approach$
Franziska Schmidta,1, Karin Ribia,b , Joerg Haslbeckc,d,1, Corinne Ureche, Karin Holmf ,
Manuela Eichera,*
a
Institute of Higher Education and Research in Healthcare, Faculty of Biology and Medicine, University of Lausanne and University Hospital Lausanne,
Lausanne, Switzerland
b
International Breast Cancer Study Group (IBCSG), Bern, Switzerland
c
Swiss Cancer League, Division Follow-up Care, Bern, Switzerland
d
Nursing Science, University of Basel, Basel, Switzerland
e
Women’s Hospital, University Hospital Basel, Basel, Switzerland
f
Patient Advocates for Cancer Research and Treatment (Association PACRT), Geneva, Switzerland
A R T I C L E I N F O A B S T R A C T
Article history: Objective: The peer-led Cancer Thriving and Surviving Program (CTS) has demonstrated improved health
Received 2 May 2019 outcomes for cancer survivors. We describe a co-creative process for adapting the CTS for breast cancer
Received in revised form 8 March 2020 survivors in Switzerland and integrating the program into the clinical pathway of Swiss breast centers.
Accepted 31 March 2020
Methods: A co-creative approach was employed. Breast cancer survivors and health care professionals
(total n = 81) participated in three workshops, an online rating, and a consensus conference. An iterative
Keywords: cycle (evidence, ideas, refining, rating, and synthesis) guided the adaptation process.
breast cancer
Results: Survivors involvement in the adaptation process allowed to tailor the self-management program
cancer survivorship
co-creation
to the psychosocial needs identified as the highest priority. New contents “Being a woman”, “Breast
self-management cancer and my (working) life” and “My exercise” were added to the CTS. Program duration was expanded
peer-led from 6 to 7 weeks. Transition to follow-up care was considered as the optimal time point for program
integration into the clinical pathway.
Conclusion: The co-creative process may serve as a model in adapting supportive interventions for cancer.
A subsequent pilot testing examined the feasibility and preliminary efficacy.
Practice implications: Combining expertise of health care professionals and patients to co-create a peer-
led breast cancer self-management program may enhance acceptability and adoption.
© 2020 Elsevier B.V. All rights reserved.
1. Introduction and aims survivorship refers to the phase following treatment completion
when women have to adapt to the new situation [3]. In
Deaths from breast cancer have progressively declined over the Switzerland, up to 30% of breast cancer survivors report unmet
past twenty years [1]. Women diagnosed with breast cancer are needs posttreatment on psychosocial issues (e. g. fear of
living longer yet increased breast cancer survivorship presents metastasis, uncertainty, anxiety, sexuality) [4]. Living with these
physical and psychosocial challenges for survivors [2]. Cancer illness-related consequences can negatively impact return to a
new ‘normal’ way of life (e.g. self-esteem, family and social
relationships, work and career options) [2,5,6]. Interventions
$
fostering self-management [5,7,8] have demonstrated positive
On behalf of the “Co-creating and testing the reach and preliminary efficacy of
effects on breast cancer survivor health outcomes [9–13].
an integrated peer-to-peer self-management program for breast cancer survivors in
Switzerland: pilot study group (COSS)” study group. Traditionally, such interventions have been delivered by health
* Corresponding author at: Institute of Higher Education and Research in care professionals [3,11] and relatively few have employed a peer-
Healthcare, University of Lausanne and University Hospital Lausanne, SV-A Secteur led approach [14]. In peer-led programs, lay persons living with
Vennes, Route de la Corniche 10, 1010 Lausanne, Switzerland.
similar illness-related challenges are trained to deliver supportive
E-mail address: manuela.eicher@chuv.ch (M. Eicher).
1
formerly: Center of Competence Patient Education, Careum Research, Research
interventions to other survivors [15]. Peer support is promising
Institute of the Kalaidos University of Applied Science, Dept. of Health, Zurich, because it provides opportunities for sharing experiences,
Switzerland emotional empathy, providing information as well as practical
https://doi.org/10.1016/j.pec.2020.03.028
0738-3991/© 2020 Elsevier B.V. All rights reserved.F. Schmidt et al. / Patient Education and Counseling 103 (2020) 1780–1789 1781
assistance and coaching [14–16]. Studies demonstrate that breast consensus conference was to seek final agreement of the adapted
cancer survivors value this kind of support [14] and benefit in course contents and the predefined time point for clinical
terms of improved quality of life [14,17] – particularly when integration of the program.
interventions are provided in a standardized format [17].
One of the few existing standardized, evidenced-based peer-led 2.2. Stakeholder engagement
self-management programs for cancer survivors is the Cancer
Thriving and Surviving Program (CTS) [18]. The CTS draws on the As part of the co-creative approach [29,34], we established
Chronic Disease Self-management Program (CDSMP) [19]. Both the three groups with key stakeholders to combine scientific and
CDSMP and the CTS are based on principles of social-cognitive practical knowledge [38,39]: i) a transdisciplinary working group
theory [20] and involve group-based workshops over six weeks (TWG) that met for the three workshops; ii) participants of the
(2.5 hour per week) provided by two trained peer leaders [18,21]. A online rating (ORT); and iii) participants at the consensus
detailed course manual guides peer leaders in conducting the conference (CC) (Table 1). Key stakeholders could particpate in
workshops in a structured manner [21]. The focus is to empower more than one group (e.g. participants of the TWG could
patients in self-management skills (e.g. decision-making, action participate in the ORT and at the CC). Inclusion criteria for TWG
planning, and problem-solving) through interactive peer-to-peer participants comprised German language, female breast cancer
exchanges [21]. In Switzerland, a translated and cultural adapted survivors who were at least two years post-treatment, health care
version of the CDSMP, entitled Evivo (E - empowerment, vivo - I am providers employed at a Swiss breast center and involved in breast
living), is implemented in German- and French speaking regions cancer care/treatment or being an Evivo master trainer. The same
[22]. Evivo has demonstrated improvements in quality of life and criteria applied to ORT and CC. Personal/professional reference to
self-efficacy [22,23]. However, similar to the CDSMP and CTS, breast cancer survivorship was a further criteria for the ORT,
Evivo findings are limited by challenges in recruiting participants respectively English language and expertise in self-management
[18,24–26]. Notably, cancer patients represented only 5% of Evivo and cancer survivorship for inclusion in the CC. Eligible stake-
participants [27]. One reason for this low participation of cancer holders for the TWG, ORT, CC were purposefully selected with a
patients could be that Evivo is delivered mainly in community snowball sampling technique [40] from Swiss breast centers,
settings by diverse stakeholders - rather than during routine network affiliates and through personal invitation (Table 1).
follow-up care. A promising way to adress this challenge could be
the integration of such self-management programs directly into 2.3. Ethics
the clinical pathways of cancer treatment centers [23] and using a
co-creation approach when adapting the interventions to target Participants of the TWG, ORT and CC received oral and/or
specific illness-related problems [28]. written information of the scope and purpose of the project in
Co-creation refers to the process wherein patients (survi- advance and verbal consent to participate was obtained. As no
vors) are engaged at the outset to develop research priorities clinical data of participants was collected, it was considered
and development interventions to improve clinical care [29], exempt from (i.e. outside of the scope of) the Federal Act on
thereby incorporating patient experiences in the process. This Research involving Human Beings [41]. Thus, informed consent of
is important because it is a complementary expertise that participants was not required.
health care professionals do not have [30]. Co-creation has been
used to develop self-management interventions for a variety of 2.4. Adaptation process
chronic illnesses including human immunodeficiency virus
(HIV) [31], Parkinson’s disease [32], heart failure [33] and For the adaptation process, we applied an iterative 5-step cycle
cancer [34,35]. based on a co-creative approach: evidence, ideas, refining, rating
Currently, no culturally adapted version of the CTS is available and synthesis (Fig. 1). We selected the co-creative 5-step cycle as it
to meet the needs of the growing population of cancer survivors in has been previously demonstrated to be useful in developing a self-
Switzerland. As prior studies show that women are most likely to management intervention for cancer survivors [34]. This approach
participate in peer-led self-management programs (i.e. CDSMP, provided a structured process for participants to share thoughts
CTS, Evivo) [23,26,36], it seems that such a program is well suited and ideas.
for breast cancer. For the adaptation process we combined the iterative cycle
(Fig. 1) with four key steps identified in a recent scoping study of
2. Methods frameworks for adapting public health evidence-based interven-
tions [42]. For each phase, (i.e. workshops, online rating and
2.1. Adaptation approach consensus conference) we formulated specific aims. In order to
achieve these aims, two members of the research team moderated
A co-creative approach was employed to adapt a peer-led self- steps 1-4 of the iterative cycle at the workshops and at the
management program for female breast cancer survivors in consensus conference. Due to these aims, we did not perform all
Switzerland, which is embedded in a larger project entitled: steps of the iterative cycle in every phase (e.g. step 4 in Workshop 1
“Co-creating and testing the reach and preliminary efficacy of an and Workshop 3). The detailed adaptation process is outlined
integrated peer-to-peer self-management program for breast below (Fig. 2).
cancer survivors in Switzerland: pilot study (COSS)” (Identifier
NCT03651921) [37]. 2.4.1. Workshop 1, online rating, Workshop 2 & 3
From November 2016 – June 2017, we condcuted three Phase A (Fig. 2): In Workshop 1, two members of the research
workshops, one online rating and one final consensus conference. team explained the overall objectives of the COSS pilot study and
The workshops 1-3 and the online rating aimed to: i) identify the introduced the rationale of this adaptation process in simple terms.
most relevant self-management support needs of breast cancer Since the aim of Workshop 1 was to collect ideas to be added or
survivors in Switzerland; ii) define the course contents necessary removed from the Evivo/CTS (Fig. 2), the two workshop facilitators
to address these needs; and iii) discuss the optimal time point for presented the content of the CTS and Evivo programs (Table 2) by
initiating the self-management program into the clinical pathway using printouts that were placed on pin boards. Further, they
at breast cancer centers in Switzerland. The objective of the highlighted recommendations from previous studies evaluating1782 F. Schmidt et al. / Patient Education and Counseling 103 (2020) 1780–1789
Table 1
Description of participants in the adaptation process.
Adaptation Process Working Participants Recruitment Inclusion
Group Criteria
Workshop 1 TWG Breast cancer survivors (3) Invitation letters sent by email to German language,female breast
Patient advocate (1) individuals from the Swiss cancer survivors: 2 years post-
Breast care nurses (5) network of breast centers treatment,health care providers:
Psychologist (1) employed at a swiss breast center
Psycho-oncologists (2) and involved in breast cancer
Nurse scientists (3) care/treatment, self-management
Workshop 2 TWG Breast cancer survivors (3)
Patient advocate (1)
Breast care nurses (4)
Psychologist (1)
Psycho-oncologists (2)
Gynecologist (1)
Evivo master trainer (1)
Nurse scientists (3)
Workshop 3 TWG Breast cancer survivors (2)
Patient advocate (1)
Breast care nurses (4)
Psycho-oncologists (2)
Evivo master trainer (1)
Nurse scientists (3)
Online Rating* ORT Breast cancer survivors (1-2) Invitation letters sent by email to German language, personal/
Relatives/family members (2) individuals from selected breast professional reference to breast
Patient advocate (1) centers, which had already signed cancer survivorship
Breast care nurses (10) a letter of intent for a planned
Psychologist (1) multicenter trial, at study
Psycho-oncologists (3) preparation.
Gynecologists (5) TWG were also invited orally and
Oncologists (3) by email.
Evivo master trainer (1)
Cancer survivorship expert (1)
Nurse scientists (5)
Consensus Conference CC Breast cancer survivors (4) Invitation letters sent by email to German and English language,
Patient advocate (1) individuals from selected breast personal/ professional reference
Breast care nurses (11) centers, which had already signed to breast cancer survivorship,
Psycho-oncologists (2) a letter of intent for a planned expertise in self-management
Oncologists (2) multicenter trial, at study and cancer survivorship
Evivo master trainer (1) preparation.
International experts (3) TWG were also invited orally and
Nurse scientists (5) by email.
Experts in self-management and
cancer survivorship were invited
by email.
Legend * = Indication of several professional affiliations possible; CC = Participants at the consensus conference; ORT = Participants of the online rating participants; TWG =
Transdisciplinary working group participants
these programs [23,25,36] and summarized up-to-date evidence 7 = very important), using SurveyMonkey1. Additionally, a free-
on unmet needs of breast cancer survivors [4]. text box was included to enable identification of additional
themes.
2.5. Based on these presentations, three small groups were formed to Phase C (Fig. 2): In Workshop 2, two workshop facilitators
discuss the following questions presented the results of the online rating followed by small group
discussions of the following questions:
“Which course contents of the CTS and Evivo should be
transferred to the new program?” “Based on the results of the online rating: which topics should
“Which course contents of the CTS and Evivo should be we prioritize for the program?”
removed for the new program (i.e. are not necessary)?” “How should we deal with the issues raised by the comment
“Which contents are not included or only insufficiently function in the online rating?”
covered in the CTS and Evivo and should therefore be added?”
Answers were reported on cards and critically discussed with
Small group participants were asked to write down their the TWG. As in Workshop 1, the workshop facilitators collected and
thoughts on these questions on cards, and their notes were then assigned these notes to the CTS and Evivo contents on pin boards.
presented respectively discussed during a plenary session. The Another plenary discussion aimed to brainstorm how these
workshop facilitators assigned the collected notes to the CTS and contents should be incorporated into the program: either by
Evivo contents on pin boards, which allowed a mapping of information provision or through group-based activites (e.g.
identified contents into themes and sub-themes. brainstorming and/or problem-solving questions).
Phase B (Fig. 2): In the subsequent online rating, the ORT was Phase D (Fig. 2): Workshop 3 focused on identifying self-
invited to rate each of the collected theme/sub-themes identified management course content using the results of Workshop 2. To
in Workshop 1 on a 7-point Likert scale (0 = not at all important to facilitate discussion, the research team prepared a written draftF. Schmidt et al. / Patient Education and Counseling 103 (2020) 1780–1789 1783
Fig. 1. The interactive 5-step cycle applied to the workshops, online rating, and consensus conference.
Figure is based on Hochstenbach et al. (2017)
Legend: CTS = Cancer Thriving and Surviving Program, Evivo = German version of the Chronic Disease Self-management Program (CDSMP).
based on the results of Workshop 2, proposing course content in integration of the concepts (i.e. course content) into the existing
advance and circulated the draft prior to Workshop 3. This draft CTS/Evivo program structure [43,44]. Following each workshop,
prioritized themes to existing CTS and Evivo contents and the first author summarized workshop results based on photos
approaches for how the themes could be integrated. Participants from pin boards and minutes taken during the workshops and
discussed this draft and debated the optimal timing of initiating consensus conference. These summaries were then discussed
the self-management program into the clinical pathway of breast within the research team. Results from the online rating were
centers. The discussion of timing was facilitated by presenting descriptively reported (percentages) for discussion with stake-
visual charting of standard clinical pathways of breast cancer holders. Mindjet MindManager1 software was used for visualizing
patients in Swiss breast centers (i.e. from diagnosis through the results in a mind map.
transition to follow-up care).
3. Results
2.5.1. Final consensus conference
Phase E (Fig. 2): The adaptation process culminated with a In total, 81 stakeholders were involved in the adaptation
consensus conference where CC participants discussed and voted on process for the self-management program (Table 1). The TWG
three central questions: varied in size at each workshop and included up to 16 participants.
Thirty-six participants completed the online rating (ORT). The CC
“Which of the contents (based on the workshops 1-3 and the comprised 26 national participants and three international experts
online rating) should be retained or removed?” in cancer survivorship/self-management. Importantly, breast
“Should these contents either be integrated by information cancer survivors and patient advocates were involved in each
provision or through group-based activites?” phase of the adaptation process – ensuring adherence to a co-
“Who should invite female cancer survivors to participate in creative approach.
the self-management program?”
3.1. Prioritizing psychosocial themes for the adapted self-management
program
2.6. Analysis
Our process revealed psychosocial themes as the critical themes
Concept mapping [43] was used to synthesize workshop for the breast cancer-specific, peer-led self-management program.
findings, online rating results and consensus conference proceed- The first Workshop identified ideas to be added/removed from the
ings. In brief, concept mapping involves four sequential steps: existing CTS and Evivo programs. A total of 18-clustered themes
structuring, representation, interpretation, and utilization. These were identified for rating in the subsequent online survey (Table 3).
analytic steps facilitate identification of connections and linkage The survey respondents rated the majority of items/themes as
between ideas/identified concepts and offer a structure enabling highly important elements for the adapted self-management1784 F. Schmidt et al. / Patient Education and Counseling 103 (2020) 1780–1789
Fig. 2. Adaptation process for the workshops, online rating, and consensus conference.
The adaptation process of the Cancer Thriving and Surviving Program for Breast cancer Survivors in Switzerland (CTS-BC-CH) was conducted based on four key adaptation
steps (Escoffery et al., 2018) and on a co-creative approach applied through a 5-step iterative cycle (Hochstenbach et al., 2017). From 2016 – 2017, three workshops, an online
rating and consensus conference were conducted with key stakeholders. Specific aims were formulated for each phase (A-E). The steps of the cycle were used to achieve the
respective aims. After each phase the results were synthesized. This synthesis was then further processed in the following phase.
Legend: CTS = Cancer Thriving and Surviving Program; CTS-BC-CH = Cancer Thriving and Surviving Program for Breast cancer Survivors in Switzerland; Evivo = Swiss version
of the Chronic Disease Self-management program (CDSMP)
Results of the online rating
program (Table 3 and Appendix Fig. A1). Psychosocial themes (e.g. no additional course content was created specific to younger
difficult emotions, sexuality, intimacy, dealing with information) survivors. Rather, themes were woven into other themes such as
were considered more important than more physical themes (e.g. ‘Being a woman’ and ‘Breast cancer and my (working) life’.
nutrition, medication adherence). No new themes were identified At the consensus conference, 28 (96%) of 29 participants agreed
from the free-text comments suggesting that the TWG had with and approved the presented version of the self-management
effectively brainstormed concepts to the point of data saturation. program: “Cancer Thriving and Surviving Program for Breast
In Workshop 2, TWG agreed that themes rated ‘moderately Cancer Survivors in Switzerland” (CTS-BC-CH) (Table 4).
important’ to ‘very important’ in the online survey should be
prioritized in the self-management program (Table 3). Additional- 3.2. Optimal Time point for initiating the self-management program
ly, stakeholders emphasized the importance of including physical
activity/exercise into the program. TWG and CC participants discussed and confirmed the impor-
The mind-map generated ten overarching themes (out of the 18 tance of integrating the self-management program into the clinical
themes rated in the online rating) of which five could be integrated pathway. They agreed that the self-management program should be
into existing CTS/Evivo course contents. TWG participants decided initiated during the transition to follow-up care. In particular, breast
that the other five themes should be included as new contents. cancer survivors indicated that the transition phase can be very
Discussion suggested that personal/sensitive themes such as challenging and is a difficult period for self-managing symptoms and
sexuality and fertility issues would be best addressed by providing returning to daily activities. Participants explained that it might be
additional, targeted information rather than by direct engagement. useful to have a flexible definition for defining the end of acute
Other themes were considered appropriate for group-based treatment and the beginning of follow-up care. A broader timeline
sharing experiences. The group suggested including additional would potentially allow more women to benefit from the self-
interactive questions related to ‘obtaining a second opinion’ and management program. The consensus recommendation was that
‘strategies to deal with uncertainty’. breast care nurses in the treatment center directly invite patients to
In Workshop 3, TWG participants reviewed the research team’s participate in the self-management program, which would enhance
draft for the proposed self-management program and broadly patient acceptability and adoption.
agreed with the proposed content and structure. The research
team suggested adding three new topics in the course content: 4. Discussion and conclusion
‘Being a woman’, ‘Breast cancer and my (working) life’ and ‘My
exercise’. The additions were deemed necessary to integrate the 4.1. Discussion
prioritized themes that were not readily integrated into existing
content areas of the CTS/Evivo. Identified themes that were specific The co-creative adaptation process including breast cancer
to young breast cancer survivors overlapped with other themes so survivors and health care professionals identified psychosocialF. Schmidt et al. / Patient Education and Counseling 103 (2020) 1780–1789 1785
Table 2 adherence as a relatively low priority need (52.8 % ‘important’ to
CTS and Evivo contents presented at Workshop 1.
‘very important). Fear of recurrence as a highly resonant theme
Week Course contents (88.6% ‘important’ to ‘very important). This finding is interesting
1 Introduction to workshop given the importance of adherence to endocrine-related medi-
Group introductions cations in mitigating/preventing breast cancer recurrence and for
The mind-body connection improving survival [49]. This finding may suggest that more
Fatigue management and getting help
targeted information and a more person-centered approach may
Introduction to action plans
Closing
be important for helping breast cancer survivors in Switzerland to
2 Feedback and problem-solving better understand the association between medication adherence
Dealing with difficult emotions and outcomes. Indeed, a cooperative, collaborative relationship
Getting a good night’s sleep between patients and providers has been shown to enhance
Regaining fitness during and after
patient disease understanding as well as self-management [50,51].
cancer treatment
Making an action plan There was near universal agreement (97%) among stakeholders
Closing that collaboration is a very important component of the CTS-BC-
3 Feedback CH. Thus, our findings indicate that tailored, person-centered, self-
Managing pain
management support could help improve Swiss breast cancer care.
Living with uncertainty
Making decisions
This notion is further supported by insights gleaned from our
Future pland for health care adaptation process. It seems that more generic chronic disease
Making an action plan programs (i.e. Evivo) do not sufficiently address the disease-specific
Closing needs of breast cancer survivors. This does not correspond to the
4 Feedback
results of Lorig and colleagues (1999) [21] who developed the
Cancer and changes to your body
Healthy eating original CDSMP. They presumed the CDSMP would be suitable for
Communication skills simultaneously educating patients with different chronic illnesses.
Problem-solving Since initial reports, the CDSMP has been adapted into illness-
Making an action plan specific programs for cancer, diabetes, arthritis, HIV and chronic pain
Closing
5 Feedback
[52]. Despite having been adapted for cancer, our findings indicate
Endurance training that patients desired additional breast cancer-specific content.
Making decision about treatment and The Swiss National Strategy Against Cancer (2014 – 2020) [53]
complementary therapies recognizes the need for adapting evidenced-based self-manage-
Weight management
ment programs as part of efforts to optimize supportive cancer care
Dealing with depression
Positive thinking [54]. Our adaptation process produced a German language version
Making an action plan of the CTS that is now available for implementation into Swiss
Closing cancer centers as well as other German-speaking countries (e.g.
6 Feedback Germany, Austria) - where Evivo has already been implemented
Cancer and relationships
Guided imagery
[23]. To better address illness-related challenges, our program
Working with your health care professional could be further adapted using a modular approach. Specifically,
and health care organization additional content (modules) relevant to specific cancer types/
Looking back and planning for the future stages could be added to the CTS-BC-CH. For example, an
Closing
additional module/day could be added related to illness specific
Legend. CTS = Cancer Thriving and Surviving program; Evivo = Swiss version of the challenges of pancreatic or colorectal cancer. Also, the program
Chronic Disease Self-management program (CDSMP) should be further adapted to include the remaining minority Swiss
linguistic groups: French, Italian, and Romansch.
It is worthwhile to note the limitations of our adaptation
themes as among the most relevant needs for the adapted self- process. First, it was not possible to recruit more than two family
management program. To address the identified needs (themes) members in the online rating of the adaptation process because of
new course content was developed, i.e. “Being a woman”, “Breast recruitment difficulties. Including additional family members
cancer and my (working) life” and “My exercise”. The additional could provide further insight into the cancer survivorship
content necessitated expanding the original CTS/Evivo programs experience [4]. Future studies could give greater attention to
from six to seven weeks in duration (i.e. some workshops lasting family engagement during development/adaptation of supportive-
up to 3 hours per week). Stakeholder consensus identified the care interventions. Additional perspectives may help contribute to
transition from the end of the acute treatment to follow-up care as developing more targeted course contents and may improve
the optimal time point for integrating the program as part of patient acceptance [55]. Second, our adapted self-management
supportive care interventions at Swiss breast centers. program was developed specifically for breast cancer survivors in
To the best of our knowledge, this is the first study using a structured, German-speaking cantons of Switzerland. Thus, while linguisti-
co-creative approach to develop/adapt supportive interventions for cally appropriate, the transferability to different health care
Swiss cancer care. The approach enabled us to incorporate diverse systems in other cantons of Switzerland and other countries
perspectives and experiences from patients, advocates and health care (Germany and Austria), where survivors may express different
professionals to elicit relevant breast cancer-related themes for the self- needs, may be limited [56,57]. Third, male breast cancer survivors
management program [7,39]. In other European countries, a similar were not included in our adaptation process. There may be sex
approach was employed to develop self-management interventions for differences between male and female breast cancer survivors so
cancer patients with promising results [34,35,45]. Notably, co-creating the adapted program may not reflect the needs of male patients.
tailored interventions is relevant as it may help optimize implementa- Despite limitations, this project has several strengths that merit
tion into health care settings [34,35,45]. mention. First, to the best of our knowledge, prior adaptations of
Our adaptation process revealed a variety of unmet needs of the CDSMP/CTS did not involve patients and advocates in such an
breast cancer survivors – in line with prior work by other Swiss integrated manner. In the present work, patients were fully
investigations [4,46–48]. Of interest, participants rated medication involved and the research team included a patient advocate.1786 F. Schmidt et al. / Patient Education and Counseling 103 (2020) 1780–1789
Table 3
Themes related to breast cancer survivorship identified in Workshop 1 and rated in the online survey
Collected themes Subthemes Result online rating
(combined percentages: very
important – moderately important)
Cooperating with health care 97%
professionals during breast cancer
trajectory
Side effects and/or consequences of Symptom management (e.g. hair loss, skin changes) 94.4%
treatment Long-term consequences (e.g. fatigue) 88.9%
Connection/link between anxiety and pain 88.9%
Difficult emotions Dealing with stress 97.1%
Managing unpleasant feelings (e.g. excessive demands) 94.3%
Needs of young breast cancer Employment and career opportunities 97.2%
survivors (YBCS) Fertility aspects and desire to have children 94.4%
Disease/treatment-related endocrine changes 91.7%
(e.g. weight change)
Sexuality and intimacy Changes in body image 97.2%
Children, desire for children, grief over loss of fertility 97.2%
Loss of libido 94.4%
Changes in sexuality and intimacy 91.7%
Vaginal dryness 86.1%
Managing/dealing with Dealing with information regarding other treatment options 100%
information Dealing with breast cancer information on the internet 86.1%
Fatigue, finding help Fatigue/exhaustion in breast cancer 94.7%
Accepting offered help 91.4%
Body changes resulting from breast Changes in body/appearance – concerns of self and others 97.1%
cancer/treatment Removal of breast(s) – partial/full 97.1%
Hair changes, hair loss 91.4%
Weight changes 88.9%
Lymphedema 88.6%
Skin changes 80%
Uncertainty Fear of recurrence 88.6%
Fear of metastasis 88.3%
Fertility concerns 82.8%
Communication Importance of family communication 94.3%
Dealing with "well-intentioned advice" – friends/family 77.1%
and health care professionals
Informed decision about treatment Knowing if treatment is ‘state of the art’, 82.9%
and complementary therapies finding treatment information
Second opinions 82.9%
Psychological, social, economic and Fear of losing one's job, lost wages 88.9%
legal aspects Loss of confidence in one's body 86.1%
Return to a ‘normal’ everyday life 83.3%
Abrupt changes in daily life following diagnosis 83.3%
Altered life planning following cancer diagnosis/therapy 83.3%
Lack of supportive environment 83.3%
Desire for autonomy during/after therapy 83.3%
Hope for positive outcome/recovery 77.8%
Emotional trauma of cancer diagnosis and 75%
dissatisfaction with one’s body
Meaning in life, spirituality 52.8%
Breast cancer and relationships Expression of emotions - oneself and family 94.1%
members/relatives (especially if burdensome to oneself)
Overprotective and/or speechless family members 82.4%
Communicating symptoms/complaints and current health status 80%
Talking to friends/family about diagnosis/treatment 79.4%
Privacy, determining how much to share 71.4%
Interacting with others who are healthy 65.7%
Nutrition Healthy nutrition to help with fatigue 82.8%
Healthy nutrition for symptom management 69.4%
Weight control Healthy nutrition and physical activity 94.3%
Accepting weight changes as a consequence of treatments 86.6%
Information on undesirable treatment effects (i.e. weight changes) 85.7%
Making the self-management Men with breast cancer 75%
program accessible to others Family members 72.2%
Knowing, wanting to know about 65.7%
breast cancer and treatments
Medication adherence 52.8%
Second, we used a purposeful strategy to invite key stakeholders the first study in Switzerland to clearly define a consensus time
with diverse, complementary expertise to fully inform our point for integrating a standardized, peer-led self-management
adaptation process. Involved stakeholders spanned eight disci- intervention into the clinical pathway of treatment centers (i.e.
plines/areas of expertise (including breast cancer survivors). The Swiss breast centers). Fourth, we utilized two evidenced-based,
broad range of perspectives helped provide a comprehensive basis peer-led self-management programs (i.e. CTS, Evivo) as the starting
for understanding concerns of breast cancer survivors. Third, this is point and basis for the breast cancer specific program. The CTS andF. Schmidt et al. / Patient Education and Counseling 103 (2020) 1780–1789 1787
Table 4
Course contents of the “Cancer Thriving and Surviving Program for Breast Cancer Survivors in Switzerland” (CTS-BC-CH)
WEEK 1 WEEK 2 WEEK 3 WEEK 4 Week 5 WEEK 6 WEEK 7
Workshop Feedback and problem Feedback and Feedback and Feedback and Feedback and problem solving Feedback and
introduction solving problem problem solving problem solving (20 min) problem solving
(20 min) (30 min) solving (20 min) (20 min) (25 min)
(25 min)
Group introductions Dealing with difficult Managing Breast cancer and My exercise Breast cancer and relationships Breast cancer and
(30 min) emotions pain changes to your (15 min) (25 min) my (working) life
(40 min) (20 min) body (30 - 40 min)
(15 min)
The mind-body Getting restful sleep Living with Healthy eating Weight management Guided imagery Being a woman
connection (10 min) uncertainty (25 min) (10 min) (10 min) (30 min)
(20 min) (25 min)
Dealing with fatigue Physical activity during and Making Communication Making decisions Working with your health care Guided imagery
and getting help (20 after breast cancer decisions (20 skills about treatment (20 professional and health care (15 min)
min) treatment min) (20 min) min) organization
(25 min) (25 min)
Introduction to action Making an action plan Future plans Problem solving Dealing with Making an action plan Looking back and
plans (20 min) for health care (30 min) depression (15 min) planning for the
(40 min) (20 min) (15 min) future
(40 min)
Closing Closing Making an Making an action Positive thinking Closing Closing
(10 min) (5 min) action plan plan (25 min) (5 min) (10 min)
(15 min) (15 min)
Closing Closing Making an action
(5 min) (5 min) plan
(15 min)
Closing
(5 min)
The Cancer Thriving and Surviving Program for Breast Cancer Survivors in Switzerland is a 7-week course with weekly workshops (2.5-3 hours in duration) led by two trained
peers according to a standardized course manual. Normal font depicts content from the Cancer Thriving and Surviving (CTS) and Evivo programs. Italics depict content
adapted from CTS/Evivo. Items in bold font depict new course content.
may enhance program acceptability as well as adoption by health
Evivo programs have documented beneficial effects on health
care providers and survivors alike. The co-creative approach
outcomes and have been successfully implemented in several
recognizes patient expertise and values this knowledge in shaping
countries [36,52,58,59]. Based on prior work and our rigorous
self-management support. Patient perspectives may help shape a
patient engagement in the adaptation process, we envision that
program that is appealing to survivors and responsive to their
our self-management program will also similarly improve out-
needs. Involving diverse health care professionals not only ensures
comes in areas that matter most to breast cancer survivors in
that the current state of science knowledge is included in the
Switzerland. Last, the workshops, the online rating and the
program but is also important as these individuals can be
consensus conference may help to raise better awareness in
important agents of change in health systems. These complemen-
health care professionals about self-management. Heightened
tary forces promote the translation of research findings into
awareness may have an additional, indirect beneficial effect on
practice for improved care for breast cancer survivors.
improving breast cancer care in Switzerland.
Credit Author Statement
4.2. Conclusion
Contributor role Author
The structured adaptation process highlighted the importance
of psychosocial themes as critical elements in a peer-led self- Conceptualization Karin Ribi, Joerg Haslbeck, Manuela Eicher, Corinne
Urech, Karin Holm
management program for breast cancer survivors. The sequential Data curation Franziska Schmidt, Karin Ribi, Joerg Haslbeck, Manuela
process elicited themes that are not currently being fully addressed Eicher, Corinne Urech, Karin Holm
in Swiss breast cancer care. The co-creative process may serve as a Formal analysis Franziska Schmidt, Karin Ribi, Joerg Haslbeck, Corinne
model for patient engagement in developing/adapting person- Urech, Karin Holm, Manuela Eicher
Funding acquistion Karin Ribi, Joerg Haslbeck, Corinne Urech, Karin Holm,
centered self-management support. Currently, the program is
Manuela Eicher
being pilot tested at two breast centers in the German-speaking Investigation Joerg Haslbeck, Manuela Eicher
part in Switzerland. The pilot study will provide initial data on the Methodolgy Franziska Schmidt, Joerg Haslbeck, Manuela Eicher
impact of the adapted program (and breast cancer-specific Project Franziska Schmidt, Joerg Haslbeck, Manuela Eicher
content) on disease understanding, self-management skills, administration
Resources Franziska Schmidt, Manuela Eicher
symptom burden and perceived self-efficacy. Further, the pilot
Software Franziska Schmidt
study will offer initial feasibility data on the timing (i.e. transition Supervision Karin Ribi, Joerg Haslbeck, Manuela Eicher
to follow-up care) of introducing the peer-led self-management Validation Karin Ribi, Joerg Haslbeck, Manuela Eicher
program into the clinical pathway of Swiss breast centers. Vizualisation Franziska Schmidt, Karin Ribi, Joerg Haslbeck, Manuela
Eicher
Roles/Writing – Franziska Schmidt, Karin Ribi, Joerg Haslbeck, Manuela
4.3. Practice Implications original draft Eicher
Writing – review/ Karin Ribi, Joerg Haslbeck, Corinne Urech, Karin Holm,
Involving patients and additional key stakeholders in develop- editing Manuela Eicher
ing a supportive intervention, such as self-management support,Sie können auch lesen
