scholarly journals A pan-Canadian prospective study of young women with breast cancer: the rationale and protocol design for the RUBY study

2020 ◽  
Vol 27 (5) ◽  
Author(s):  
M.L. Quan ◽  
I.A. Olivotto ◽  
N.N. Baxter ◽  
C.M. Friedenreich ◽  
K. Metcalfe ◽  
...  

Introduction The understanding of the biology and epidemiology of, and the optimal therapeutic strategies for, breast cancer (bca) in younger women is limited. We present the rationale, design, and initial recruitment of Reducing the Burden of Breast Cancer in Young Women (ruby), a unique national prospective cohort study designed to examine the diagnosis, treatment, quality of life, and outcomes from the time of diagnosis for young women with bca. Methods Over a 4-year period at 33 sites across Canada, the ruby study will use a local and virtual recruitment model to enrol 1200 women with bca who are 40 years of age or younger at the time of diagnosis, before initiation of any treatment. At a minimum, comprehensive patient, tumour, and treatment data will be collected to evaluate recurrence and survival. Patients may opt to complete patient-reported questionnaires, to provide blood and tumour samples, and to be contacted for future research, forming the core dataset from which 4 subprojects evaluating genetics, lifestyle factors, fertility, and local management or delivery of care will be performed. Summary The ruby study will be the most comprehensive repository of data, biospecimens, and patient-reported outcomes ever collected with respect to young women with bca from the time of diagnosis, enabling research unique to that population now and into the future. This research model could be used for other oncology settings in Canada.

Author(s):  
Angelique Bobrie ◽  
Marta Jarlier ◽  
Aurore Moussion ◽  
William Jacot ◽  
Veronique D’Hondt

Abstract Purpose Sexual quality of life (QoL) is affected during and after breast cancer (BC) treatment. The purpose was to investigate sexual and global QoL and patient-reported measures to address this issue in young women (< 51 years) with BC after the acute treatment phase, during adjuvant endocrine therapy. Methods Three EORTC questionnaires and an additional specific questionnaire, developed for the study, were used to assess sexual and global QoL and patient-reported supportive measures in BC patients who had received their endocrine therapy for at least 24 months. Among the 54 eligible patients, 45 (83%) agreed to participate in the study. Results We showed a deterioration in sexual QoL and poor communication with healthcare professionals. Most patients (88.9%) declared that it was important that sexuality should be discussed with caregivers and that the partner should also be involved. Most patients (60%) had taken at least one action to overcome their sexual problems. Most of these interventions (63%) originated from the patient herself. Conclusions Sexual QoL is a major issue in young BC patients and is poorly addressed by healthcare professionals. Most of the supportive methods used by the patients to overcome these side effects were on their own initiative. Communication and counseling on sexuality by healthcare professionals need to be improved during BC treatment. Patients suggested supportive measures they would find useful and appropriate to develop in the clinic. The final goal is to improve the sexual QoL of BC patients with the appropriate intervention and support.


2021 ◽  
Author(s):  
Angelique Bobrie ◽  
Marta Jarlier ◽  
Aurore Moussion ◽  
William Jacot ◽  
Veronique D'Hondt

Abstract Purpose: sexual quality of life (QoL) is affected during and after breast cancer (BC) treatment. The purpose was to investigate sexual and global QoL and patient-reported measures to address this issue in young women (< 51 years) with BC after the acute treatment phase, during adjuvant endocrine therapy. Methods: three EORTC questionnaires and an additional specific questionnaire, developed for the study, were used to assess sexual and global QoL and patient-reported supportive measures in BC patients who had received their endocrine therapy for at least 24 months.Results: We showed a deterioration of the sexual QoL and a poor communication with healthcare professionals. Most patients (88.9%) declared important that sexuality should be discussed with caregivers and that the partner should also be involved. Most patients (60%) had taken at least one action to overcome their sexual problems. Most of these interventions (63%) originated from the patient herself. Conclusions: sexual QoL is a major issue in young BC patients and is poorly addressed by healthcare professionals. Most of the supportive methods used by the patients to overcome these side effects were at their own initiative. Communication and counseling on sexuality from healthcare professionals needs to be improved during BC treatment. Patients suggested supportive measures they would find useful and appropriate to develop in clinic. The final goal being to improve sexual QoL of BC patients with the appropriate intervention and support.NCT 04200001


2021 ◽  
Author(s):  
Angelique Bobrie ◽  
Marta Jarlier ◽  
Aurore Moussion ◽  
William Jacot ◽  
Veronique D'Hondt

Abstract Purpose: sexual quality of life (QoL) is affected during and after breast cancer (BC) treatment. Young women are more frequently and severely affected. We analyzed the sexual and global QoL in less than 51 years old women with BC receiving adjuvant endocrine therapy for at least 2 years, to analyze sexual dysfunction after the acute treatment phase. We also questioned women on the actions taken individually and on those they would find useful to address these issues.Methods: a prospective study was conducted to evaluate the sexual QoL of young women with BC during the adjuvant endocrine treatment and to assess patient-reported supportive measures.Results: a total of 45 women completed the 3 EORTC questionnaires and an additional specific questionnaire proposed in the context of the study. We showed a deterioration of the sexual QoL and a poor communication with healthcare professionals about this issue. Most patients (88.9%) declared important that sexuality should be discussed with caregivers and that the partner should be involved in the discussion. The majority of patients (60%) had taken at least one action to overcome the sexual problems, in order of frequency: local treatment like vaginal moisturizer, consultation with a psychologist, while a consultation with a sexologist remained rare. Most of these interventions (63%) originated from the patient herself. Conclusion: sexual QoL is a major issue in BC patients less than 51 years old during endocrine treatment. Communication on sexuality with healthcare professionals needs to be improved. Most of the supportive methods used by the patients were at their own initiative, highlighting the need for a professional counseling on this topic. Finally, patients suggested supportive measures they would find useful and appropriate to develop in clinic.NCT 04200001


2020 ◽  
Vol 29 (1) ◽  
pp. 491-497
Author(s):  
Jenny Bergqvist ◽  
Staffan Lundström ◽  
Yvonne Wengström

Abstract Purpose The primary aim of the study was to develop and investigate a patient interactive digital support (an app) for patients on adjuvant endocrine breast cancer treatment. Patient’s interactive digital applications are a fast-growing area for research and development. In general, patients want more information and support with regard to their diagnosis, treatment and self-care. At the same time, the health care system has limited resources for follow-up. Our primary endpoints were usability of the app and if it added any value to the patients. Methods We designed and constructed a prototype, in dialogue with patients, containing four main modules for registration of drug compliance, performed physical exercise, self-care activities, and questions on health and quality of life. The app was then tested by patients and improved further before we completed a pilot study in which 15 patients used the app for 3 months. Results Patients perceived the app easy to use with a very high median system usability score of 88.8, range 30–100. The 15 women registered in total 4251 times, range 118 to 372. The majority of registrations concerned compliance (adherence to treatment) and physical exercise. Conclusion The app was perceived easy to use and of support in every-day life of breast cancer survivors. How to best integrate electronically collected patient reported outcome measures in clinical routine needs to be further studied, and future research will show if it will be cost-effective in terms of better health outcome and less resource use.


2020 ◽  
Vol 17 (02) ◽  
pp. 88-93
Author(s):  
Martina Schmidt ◽  
Karen Steindorf

AbstractHealth-related quality of life is of great relevance for breast cancer patients at all stages, both during treatment and in the medium and long term after treatment. Quality of life is becoming increasingly important as an end point in licensing studies for new treatments and in scientific studies comparing different therapies. In addition to a brief global assessment of quality of life, other important patient-reported outcomes should be assessed. Patients with breast cancer often report limitations due to fatigue, sleep problems, sexual and/or climacteric problems, cognitive problems, mental problems and loss of physical performance. Quality of life after breast cancer could probably be further increased if education, screening and treatment of these symptoms were a systematic part of oncological care.


Cancers ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 2506
Author(s):  
Mark van Barele ◽  
Bernadette A. M. Heemskerk-Gerritsen ◽  
Yvonne V. Louwers ◽  
Mijntje B. Vastbinder ◽  
John W. M. Martens ◽  
...  

Triple-negative breast cancers (TNBC) occur more frequently in younger women and do not express estrogen receptor (ER) nor progesterone receptor (PR), and are therefore often considered hormone-insensitive. Treatment of premenopausal TNBC patients almost always includes chemotherapy, which may lead to premature ovarian insufficiency (POI) and can severely impact quality of life. Hormone replacement therapy (HRT) is contraindicated for patients with a history of hormone-sensitive breast cancer, but the data on safety for TNBC patients is inconclusive, with a few randomized trials showing increased risk-ratios with wide confidence intervals for recurrence after HRT. Here, we review the literature on alternative pathways from the classical ER/PR. We find that for both estrogens and progestogens, potential alternatives exist for exerting their effects on TNBC, ranging from receptor conversion, to alternative receptors capable of binding estrogens, as well as paracrine pathways, such as RANK/RANKL, which can cause progestogens to indirectly stimulate growth and metastasis of TNBC. Finally, HRT may also influence other hormones, such as androgens, and their effects on TNBCs expressing androgen receptors (AR). Concluding, the assumption that TNBC is completely hormone-insensitive is incorrect. However, the direction of the effects of the alternative pathways is not always clear, and will need to be investigated further.


1998 ◽  
Vol 7 (2) ◽  
pp. 89-100 ◽  
Author(s):  
Joan R. Bloom ◽  
Susan L. Stewart ◽  
Monica Johnston ◽  
Priscilla Banks

2019 ◽  
Vol 3 (1) ◽  
Author(s):  
A. Barnadas ◽  
◽  
M. Muñoz ◽  
M. Margelí ◽  
J. I. Chacón ◽  
...  

Abstract Background Bone metastasis (BM) is the most common site of disease in metastatic breast cancer (MBC) patients. BM impacts health-related quality of life (HRQoL). We tested prospectively the psychometric properties of the Bone Metastasis Quality of Life (BOMET-QoL-10) measure on MBC patients with BM. Methods Patients completed the BOMET-QoL-10 questionnaire, the Visual Analogue Scale (VAS) for pain, and a self-perceived health status item at baseline and at follow-up visits. We performed psychometric tests and calculated the effect size of specific BM treatment on patients´ HRQoL. Results Almost 70% of the 172 patients reported symptoms, 23.3% experienced irruptive pain, and over half were receiving chemotherapy. BOMET-QoL-10 proved to be a quick assessment tool performing well in readability and completion time (about 10 min) with 0–1.2% of missing/invalid data. Although BOMET-QoL-10 scores remained fairly stable during study visits, differences were observed for patient subgroups (e.g., with or without skeletal-related events or adverse effects). Scores were significantly correlated with physician-reported patient status, patient-reported pain, symptoms, and perceived health status. BOMET-QoL-10 scores also varied prospectively according to changes in pain intensity. Conclusions BOMET-QoL-10 performed well as a brief, easy-to-administer, useful, and sensitive HRQoL measure for potential use for clinical practice with MBC patients. Trial registration NCT03847220. Retrospectively registered on clinicaltrials.gov (February the 20th 2019).


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