To Live Better After Breast Cancer Treatment

NCT ID: NCT06471452

Last Updated: 2024-06-24

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

40 participants

Study Classification

INTERVENTIONAL

Study Start Date

2023-10-01

Study Completion Date

2025-12-31

Brief Summary

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The most common cancer among women in Sweden is breast cancer. Advances in treatment have improved survival, but these advances have come at a steep price since most treatments impose substantial morbidity and burden on patients and their families. Furthermore, many survivors from cancer have ongoing poor health and well-being and long-term rehabilitation and support should not be neglected to prevent recurrence and increase survival. There are good reasons to believe that routine collection of relevant patient-reported symptoms facilitates person-centered care where the patient is a participatory member of the team. This study aims to pilot-test a supportive and person-centered care intervention in primary healthcare for six months during the first year after primary treatment for breast cancer, assisted by digital technology and compare it to standard care only. The intervention consists of symptom reporting and management in an app in combination with health dialogues with a study-specific nurse at the Primary healthcare centre.

Detailed Description

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The incidence rate of breast cancer has increased during the past decades and has surpassed lung cancer as the most frequently diagnosed type of cancer worldwide. In Sweden, it is the most common cancer among women and in 2021, 8 616 women received a diagnosis, the ten-year survival rate is over 87%. The overall increase in survival rates can be explained by population-based mammography screening, early detection, and advancements in treatment. The negative impact of treatment on patients' quality of life (QoL) has been established as important to consider in the adjuvant treatment setting of operable breast cancer. Furthermore, several treatments are given over longer periods; e.g. anti-hormonal treatments are prescribed for up to 10 years after a breast cancer diagnosis. As the number of patients with breast cancer increases, so does the demands on the healthcare services throughout the whole cancer trajectory.

Patient-reported outcome (PRO) is an outcome that is reported by the patients. Previous research on collecting PRO:s through an interactive application during treatment for breast cancer, pancreatic cancer, and prostate cancer shows promising results such as reduced symptom burden and improved QoL as well as survival. Current research emphasizes the importance of user involvement in the development phase of web-based interventions and that its content is specific to the patient´s needs as well as delivered at the right stage in the cancer trajectory.

The aim is to pilot- test routine assessment of patient's reported symptoms and support in self-management assisted by digital technology for six months during the first year after primary treatment for breast cancer in combination with health dialogues with a study-specific nurse at the Primary healthcare centre. The primary objective is to evaluate the acceptability and feasibility of a digital and nurse-led support intervention in primary healthcare for patients with breast cancer during the first year after primary treatment. The secondary objectives of this trial are to (i) evaluate the potential efficacy of the intervention, (ii) obtain estimates for secondary outcome measures and potential mediators and moderators to be used in a future trial and (iii) evaluate the feasibility of such assessments.

There are 250 PHCCs within the region and to achieve representativeness for randomization the Care Need Index (CNI) for calculating economic compensation to the PHCC is used. It measures healthcare needs for the distribution of primary care resources to the population with the biggest need. A high CNI index equals low socioeconomic status, and a low CNI index equals high socioeconomic status. The intervention involves the entire PHCC and cluster randomisation is used to avoid a spill-over effect. Approximately ten PHCCs will be matched on CNI index and the number of patients allocated to the PHCCs.

Conditions

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Breast Cancer Survivorship

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

NONE

Study Groups

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Intervention group

The intervention consists of standard care and the app (called Interaktor) for routine symptom reporting of common symptoms regarding fatigue, emotional distress, sleep, pain, loss of appetite, hot flashes/sweating, edema, and sexual health, in combination with health dialogues with a study-specific nurse. The reports are made weekly during the first month and thereafter as mutually agreed, at minimum once a month for six months, with instant self-care advice in combination with supportive care with a study-specific nurse. At health dialogues with the study-specific nurse, the patient-reported assessments in the app will be used to discuss the individual's current situation and to plan eventual additional actions needed.

The intervention will last for 6 months.

Group Type EXPERIMENTAL

Interaktor

Intervention Type DEVICE

In the app (Interaktor), the patients will report frequency and distress on common symptoms and concerns.

Free text comments will also be possible to make to cover the patients' other potential needs. Information about the concerns will be included in the app containing; a) general information about why they have the side effects and what it means b) evidence-based advice about self-management; c) when they should contact health care providers, and d) further information linked to reliable documents, web pages or YouTube videos.

Supportive Care delivered from a study-specific nurse. During the health dialogues with a nurse, the patient-reported assessments in the app will be used to discuss the individual's current situation and needs and to plan eventual additional actions needed such as support from a physiotherapist, social worker, dietitian or if a visit to the physician if needed. This is documented in the patient's journal.

Control group

The participants in the control group will only receive standard care in the secondary care setting. Usually after ended primary treatment the follow-up is determined based on the severity of the tumour, the received postoperative treatment and the patient's general health status. Patients should be offered a yearly follow-up for at least five years where the patients are made a part of the decision-making process of the structure of the follow-up. All patients are allocated a contact nurse with a telephone number to contact when needed.

Group Type NO_INTERVENTION

No interventions assigned to this group

Interventions

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Interaktor

In the app (Interaktor), the patients will report frequency and distress on common symptoms and concerns.

Free text comments will also be possible to make to cover the patients' other potential needs. Information about the concerns will be included in the app containing; a) general information about why they have the side effects and what it means b) evidence-based advice about self-management; c) when they should contact health care providers, and d) further information linked to reliable documents, web pages or YouTube videos.

Supportive Care delivered from a study-specific nurse. During the health dialogues with a nurse, the patient-reported assessments in the app will be used to discuss the individual's current situation and needs and to plan eventual additional actions needed such as support from a physiotherapist, social worker, dietitian or if a visit to the physician if needed. This is documented in the patient's journal.

Intervention Type DEVICE

Eligibility Criteria

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Inclusion Criteria

* patients with breast cancer at the end of curative treatment
* able to read and understand Swedish
* considered being physically, psychologically and cognitively able to participate in the study

Exclusion Criteria

\-
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Karolinska Institutet

OTHER

Sponsor Role lead

Responsible Party

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Ann Langius-Eklöf

Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Ann Langius-Eklöf, Professor

Role: PRINCIPAL_INVESTIGATOR

Karolinska Institutet

Locations

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Health Care Services Stockholm County (SLSO)

Stockholm, , Sweden

Site Status RECRUITING

Countries

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Sweden

Central Contacts

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Kristina Rooth, MSc

Role: CONTACT

0046707526845

Ann Langius Eklöf, Professor

Role: CONTACT

Facility Contacts

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Kristina Rooth, PhD student

Role: primary

46 70-752 68 45

References

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Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, Bray F. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin. 2021 May;71(3):209-249. doi: 10.3322/caac.21660. Epub 2021 Feb 4.

Reference Type BACKGROUND
PMID: 33538338 (View on PubMed)

Socialstyrelsen. Statistik om nyupptäckta cancerfall 2021. https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/statistik/2022-12-8308.pdf: Sveriges officiella statistik Hälsa och sjukvård; 2022. p. 5.

Reference Type BACKGROUND

Roginski M, Sifaki-Pistolla D, Stomby A, Velivasaki G, Faresjo T, Lionis C, Faresjo A. Paradoxes of breast cancer incidence and mortality in two corners of Europe. BMC Cancer. 2022 Nov 2;22(1):1123. doi: 10.1186/s12885-022-10243-w.

Reference Type BACKGROUND
PMID: 36319987 (View on PubMed)

Cardoso F, Kyriakides S, Ohno S, Penault-Llorca F, Poortmans P, Rubio IT, Zackrisson S, Senkus E; ESMO Guidelines Committee. Electronic address: [email protected]. Early breast cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-updagger. Ann Oncol. 2019 Aug 1;30(8):1194-1220. doi: 10.1093/annonc/mdz173. No abstract available.

Reference Type BACKGROUND
PMID: 31161190 (View on PubMed)

Ellegaard MB, Grau C, Zachariae R, Jensen AB. Women with breast cancer report substantially more disease- and treatment-related side or late effects than registered by clinical oncologists: a cross-sectional study of a standard follow-up program in an oncological department. Breast Cancer Res Treat. 2017 Aug;164(3):727-736. doi: 10.1007/s10549-017-4301-x. Epub 2017 May 23.

Reference Type BACKGROUND
PMID: 28536950 (View on PubMed)

Sundquist K, Malmstrom M, Johansson SE, Sundquist J. Care Need Index, a useful tool for the distribution of primary health care resources. J Epidemiol Community Health. 2003 May;57(5):347-52. doi: 10.1136/jech.57.5.347.

Reference Type BACKGROUND
PMID: 12700218 (View on PubMed)

Tariman JD, Berry DL, Halpenny B, Wolpin S, Schepp K. Validation and testing of the Acceptability E-scale for web-based patient-reported outcomes in cancer care. Appl Nurs Res. 2011 Feb;24(1):53-8. doi: 10.1016/j.apnr.2009.04.003. Epub 2009 Sep 18.

Reference Type BACKGROUND
PMID: 20974066 (View on PubMed)

Lewis, J. R. (2018) The System Usability Scale: Past, Present, and Future, International Journal of Human-Computer Interaction, 34:7, 577-590, DOI: 10.1080/10447318.2018.1455307

Reference Type BACKGROUND

Christie J, O'Halloran P, Stevenson M. Planning a cluster randomized controlled trial: methodological issues. Nurs Res. 2009 Mar-Apr;58(2):128-34. doi: 10.1097/NNR.0b013e3181900cb5.

Reference Type BACKGROUND
PMID: 19289934 (View on PubMed)

Bjelic-Radisic V, Cardoso F, Cameron D, Brain E, Kuljanic K, da Costa RA, Conroy T, Inwald EC, Serpentini S, Pinto M, Weis J, Morag O, Lindviksmoen Astrup G, Tomaszweksi KA, Pogoda K, Sinai P, Sprangers M, Aaronson N, Velikova G, Greimel E, Arraras J, Bottomley A; EORTC Quality of Life Group and Breast Cancer Group. An international update of the EORTC questionnaire for assessing quality of life in breast cancer patients: EORTC QLQ-BR45. Ann Oncol. 2020 Feb;31(2):283-288. doi: 10.1016/j.annonc.2019.10.027. Epub 2019 Dec 18.

Reference Type BACKGROUND
PMID: 31959345 (View on PubMed)

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Reference Type BACKGROUND
PMID: 9610213 (View on PubMed)

Wangdahl JM, Martensson LI. The communicative and critical health literacy scale--Swedish version. Scand J Public Health. 2014 Feb;42(1):25-31. doi: 10.1177/1403494813500592. Epub 2013 Aug 27.

Reference Type BACKGROUND
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Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004 Aug;39(4 Pt 1):1005-26. doi: 10.1111/j.1475-6773.2004.00269.x.

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Herdman M, Gudex C, Lloyd A, Janssen M, Kind P, Parkin D, Bonsel G, Badia X. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011 Dec;20(10):1727-36. doi: 10.1007/s11136-011-9903-x. Epub 2011 Apr 9.

Reference Type BACKGROUND
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Langius-Eklof A, Craftman AG, Gellerstedt L, Kelmendi N, Rooth K, Gustavell T, Sundberg K. Digital and nurse-led support intervention in primary care during the first year after curative intent treatment for breast or prostate cancer: study protocol of two cluster randomised controlled pilot trials. BMJ Open. 2025 Feb 22;15(2):e090848. doi: 10.1136/bmjopen-2024-090848.

Reference Type DERIVED
PMID: 39986997 (View on PubMed)

Other Identifiers

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Dnr-2023-02423-02

Identifier Type: -

Identifier Source: org_study_id

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