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Breast cancer patients' attitudes about rationing postlumpectomy radiation therapy: applicability of trade-off methods to policy-making.

https://arctichealth.org/en/permalink/ahliterature207523
Source
J Clin Oncol. 1997 Oct;15(10):3192-200
Publication Type
Article
Date
Oct-1997
Author
V A Palda
H A Llewellyn-Thomas
R G Mackenzie
K I Pritchard
C D Naylor
Author Affiliation
St Michael's Hospital, University of Toronto, Canada.
Source
J Clin Oncol. 1997 Oct;15(10):3192-200
Date
Oct-1997
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Attitude
Breast Neoplasms - psychology - radiotherapy - surgery
Canada
Combined Modality Therapy
Female
Health Care Rationing
Humans
Mastectomy, Segmental
Middle Aged
Patient Acceptance of Health Care
Patient satisfaction
Policy Making
Risk factors
Time Factors
Waiting Lists
Abstract
Along with evidence, clinical policies must take patients' values into account. Particularly where evidence is limited and where assumptions of utility-maximizing behavior may not be valid, new methods such as trade-off techniques (TOTs), which allow elicitation of patients' treatment alternatives, might be useful in policy formulation. We used TOTs to assess breast cancer patients' attitudes toward two clinical policies designed to ration adjuvant postlumpectomy breast radiation therapy.
Cross-sectional interviews were performed in a tertiary cancer center. A total of 102 patients were presented with information about the side effects and benefits associated with two hypothetical decisions: (1) willingness to receive treatment elsewhere to shorten the wait for radiation therapy, and (2) foregoing radiation therapy in the face of small marginal benefits. For each scenario, a TOT was used to identify the maximal acceptable wait time (MAWT) for therapy and the benefit threshold at which the patient would forego therapy. Associations of clinical and demographic factors with these decisions were determined by regression analysis.
Patients would be willing to wait, on average, 7 weeks before wanting to leave their city for radiation therapy, less than the 13-week delay our patients actually faced. Older patients were less willing to wait (P = .013); 46% of patients would not give up radiation therapy, even in the face of no stated benefit. Willingness to give up radiation therapy was predicted by willingness to accept delay (odds ratio [OR], 1.84; 95% confidence interval [CI], 1.05 to 3.37) and being employed (OR, 2.61; 95% CI, 1.08 to 6.54). Patients with larger tumors were less willing to give up radiation therapy (OR, 0.57; 95% CI, 0.31 to 0.97).
Even in difficult decisions such as rationing postlumpectomy breast cancer radiation therapy, TOTs can inform policy formulation by indicating the distributions of patients' preferences.
PubMed ID
9336355 View in PubMed
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A consultation with Canadian rural women with breast cancer.

https://arctichealth.org/en/permalink/ahliterature181391
Source
Health Expect. 2004 Mar;7(1):40-50
Publication Type
Article
Date
Mar-2004
Author
Ross E Gray
Pamela James
Jackie Manthorne
Judy Gould
Margaret I Fitch
Author Affiliation
Ontario Breast Cancer Community Research Initiative, Sunnybrook & Women's Health Sciences Centre, Toronto, Ontario, Canada. ross.gray@sw.on.ca
Source
Health Expect. 2004 Mar;7(1):40-50
Date
Mar-2004
Language
English
Publication Type
Article
Keywords
Breast Neoplasms - psychology - radiotherapy - surgery
Canada
Female
Focus Groups
Health Services Accessibility
Humans
Middle Aged
Quality of Health Care
Rural Population
Self-Help Groups - organization & administration
Abstract
Relatively little research has been carried out on the health and supportive care needs of rural women living with breast cancer. In this study, results from a Canadian focus group study are used to highlight issues of importance to rural women.
A total of 276 rural women with breast cancer divided into 17 focus groups participated in the study conducted across Canada. A standardized protocol for discussion was employed. Issues of access to information, support and services were discussed, with women describing their experiences in trying to find appropriate programmes and services.
The major theme identified through analysis of qualitative data was 'becoming aware of and/or gaining access to health care information, support and services.' Other major themes included: (1) dealing with isolation; (2) having to travel; (3) feeling the financial burden and (4) coping with changing work.
Rural women with breast cancer have supportive care challenges related to their circumstances. A series of recommendations were generated through the consultation process which are contributing to the development of a national strategy focusing on the development and extension of programmes for rural women with breast cancer. Although the research on the project was not to specified standards, and suffered from less attention than community capacity building and advocacy, it proved to be of worth and revealed potential benefits from collaborations between researchers and community organizations.
PubMed ID
14982498 View in PubMed
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Experiences from having breast cancer and being part of a support group. Notes written in diaries by women during radiotherapy.

https://arctichealth.org/en/permalink/ahliterature259263
Source
Palliat Support Care. 2012 Jun;10(2):99-105
Publication Type
Article
Date
Jun-2012
Author
Sofia Emilsson
Ann-Christine Svensk
Karolina Olsson
Jack Lindh
Inger Öster
Source
Palliat Support Care. 2012 Jun;10(2):99-105
Date
Jun-2012
Language
English
Publication Type
Article
Keywords
Adult
Aged
Breast Neoplasms - psychology - radiotherapy
Cancer Care Facilities
Communication
Emotions
Female
Humans
Medical Records
Middle Aged
Qualitative Research
Self-Help Groups
Sweden
Abstract
The purpose of this study was to examine the experiences of breast cancer patients participating in a support group.
This study explores 28 stories of women with breast cancer as expressed through written diaries. Diaries were written during a 5-week period in parallel with radiotherapy and participation in a support group in a hospital. Answers to six open-ended evaluative questions concerning the support group were included in the majority of the written diaries. A qualitative content analysis was used to identify themes.
Three themes were constructed during the analysis: "positive group development." "Inhibited group development." and "the individual living with the disease." Hopes and fears for the future in regards to illness and getting better, the value of family and friends, and feelings related to daily life with breast cancer such as fatigue and changes in body image were also expressed in the diaries.
The findings suggest that the women with breast cancer found it valuable to be able to share experiences with other women in a similar situation in the context of a support group. Being part of such a group provided a space and an opportunity for reflection.
PubMed ID
22361395 View in PubMed
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Living at a residency away from home during radiotherapy as narrated by 52 patients with breast cancer: a cage of safety and discomfort.

https://arctichealth.org/en/permalink/ahliterature295203
Source
Disabil Rehabil. 2018 Feb; 40(4):450-456
Publication Type
Journal Article
Date
Feb-2018
Author
Sara Lilliehorn
Pär Salander
Author Affiliation
a Department of Social Work , Umeå University , Umeå , Sweden.
Source
Disabil Rehabil. 2018 Feb; 40(4):450-456
Date
Feb-2018
Language
English
Publication Type
Journal Article
Keywords
Adult
Breast Neoplasms - psychology - radiotherapy
Female
Humans
Interviews as Topic
Middle Aged
Narration
Residential Facilities
Social Isolation
Social Support
Sweden
Abstract
In the Nordic countries many patients with cancer conclude their treatment with 5-6 weeks of radiotherapy while staying at a residency far away from home. The experience of this stay, from a rehabilitation perspective, has not previously been studied.
Fifty-two women with breast cancer were followed with repeated thematic interviews from diagnosis up to 2 years.
The majority of women saw both pros and cons with their stay, and overall the stay could be described as "A cage of safety and discomfort". Pros included "Safety", "Closeness and learning", and "Feeling like being on holiday", while cons included "An intruding self-image", "Isolation and increased vulnerability", and "A loss of function". Some patients supported their own rehabilitation by socializing with their "fellow sisters", while others isolated themselves and mainly found it burdensome to be there.
The residence becomes an interactional field with the potential to facilitate patients in resuming a new everyday life. The women who do not interact with others and/or who are stuck with feelings of anxiety should be offered the opportunity to take part in a group exclusively for "fellow sisters" in a similar situation. Implications for Rehabilitation Staying in accommodations together with other patients receiving daily radiotherapy for cancer for 5-6 weeks lends itself to personal interactions with a rehabilitative impact. Some patients take advantage of this possibility, which might facilitate the integration of the cancer experience into a new self-image. To some more vulnerable patients the stay at the patient hotel is burdensome, and these patients represent a target group for staff interventions aiming to facilitate their stay and their resumption of a new everyday life. A suggestion is that the specialist nurses meet with every patient after about a week in order to identify women who would benefit from psychosocial interventions.
PubMed ID
27973918 View in PubMed
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Psychosocial outcomes of e-feedback of radiotherapy for breast cancer patients: a randomized controlled trial.

https://arctichealth.org/en/permalink/ahliterature269640
Source
Psychooncology. 2015 May;24(5):515-22
Publication Type
Article
Date
May-2015
Author
Mervi Siekkinen
Seppo Pyrhönen
Anne Ryhänen
Tero Vahlberg
Helena Leino-Kilpi
Source
Psychooncology. 2015 May;24(5):515-22
Date
May-2015
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Anxiety - psychology
Breast Neoplasms - psychology - radiotherapy
Electronic Mail
Female
Finland
Humans
Knowledge of Results (Psychology)
Middle Aged
Patient Education as Topic - methods
Quality of Life - psychology
Single-Blind Method
Surveys and Questionnaires
Young Adult
Abstract
This study aims to test the effectiveness on psychosocial outcomes of electronic feedback knowledge of radiotherapy intervention (e-Re-Know) for breast cancer patients.
Randomized controlled trial in one university hospital in Finland was carried out. Breast cancer patients (n?=?126) in the radiotherapy (RT) department were randomly assigned into two groups: intervention (the e-Re-Know and standard education) and control group (standard education). The e-Re-Know intervention consisted of e-feedback after response to the knowledge test delivered by e-mail. Instruments were completed before commencing first RT (M1), after concluding last RT (M2) and 3?months after last RT (M3). The main outcomes were anxiety and QOL.
Compared with the control group, the patients in the intervention group reported a marginally significant improvement in anxiety and significant improvement in QOL over time.
The e-Re-Know seems to have positive effects on psychosocial outcomes for breast cancer patients. They might gain additional value from the e-Re-Know over a longer time period. Further research needs to focus more on development of e-feedback in patient education.
PubMed ID
25241958 View in PubMed
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