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  1. Article ; Online: Gepersonaliseerde gezondheidsinformatie communiceren.

    Krahmer, Emiel / Pauws, Steffen / van de Poll-Franse, Lonneke / Vromans, Ruben

    Nederlands tijdschrift voor geneeskunde

    2022  Volume 166

    Abstract: Due to the large increase in relevant data, we can increasingly better estimate medical chances and risks and tailor them to the individual patient. In this article, we discuss why communicating such personalized information is so complicated, and how ... ...

    Title translation Communicating personalised health information.
    Abstract Due to the large increase in relevant data, we can increasingly better estimate medical chances and risks and tailor them to the individual patient. In this article, we discuss why communicating such personalized information is so complicated, and how doctors can best discuss it with their patients.
    Language Dutch
    Publishing date 2022-06-22
    Publishing country Netherlands
    Document type English Abstract ; Journal Article
    ZDB-ID 82073-8
    ISSN 1876-8784 ; 0028-2162
    ISSN (online) 1876-8784
    ISSN 0028-2162
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  2. Article ; Online: Socioeconomic differences in health-related quality of life among cancer survivors and comparison with a cancer-free population: a PROFILES study.

    Levinsen, Anne Katrine Graudal / van de Poll-Franse, Lonneke / Ezendam, Nicole / Aarts, Mieke J / Kjaer, Trille Kristina / Dalton, Susanne Oksbjerg / Oerlemans, Simone

    Journal of cancer survivorship : research and practice

    2023  

    Abstract: Purpose: This study investigates the association between socioeconomic position (SEP) and health-related quality of life (HRQoL) in a cross-sectional cohort among cancer survivors and compares with cancer-free people.: Methods: Survivors of ... ...

    Abstract Purpose: This study investigates the association between socioeconomic position (SEP) and health-related quality of life (HRQoL) in a cross-sectional cohort among cancer survivors and compares with cancer-free people.
    Methods: Survivors of colorectal, hematological, gynecological, prostate, thyroid cancer, and melanoma diagnosed 2000-2014 were identified in the PROFILES registry, and an age- and sex-matched cancer-free population were identified in the CentER panel. HRQoL, education, and comorbidity were self-reported. Street-level income and clinical factors were obtained from Statistics Netherlands and the Netherlands Cancer Registry. Multivariable logistic regression was used to examine associations of SEP (measured by education and income) and impaired HRQoL among cancer survivors and the cancer-free population, adjusting for age, sex, and time since diagnosis.
    Results: We included 6693 cancer survivors and 565 cancer-free people. Cancer survivors with low versus medium SEP more frequently reported impaired HRQoL (odds ratio (OR) range for all HRQoL outcomes, 1.06-1.78 for short education and 0.94-1.56 for low income). Survivors with high compared to medium SEP reported impaired HRQoL less frequently (OR range for all HRQoL outcomes, 0.46-0.81 for short education and 0.60-0.84 for low income). The association between SEP and HRQoL was similar in the matched cancer-free population.
    Conclusion: Low SEP was associated with impaired HRQoL in both cancer survivors and cancer-free people.
    Implications for cancer survivors: Targeted care is warranted for cancer survivors with impaired HRQoL, especially among those with low SEP.
    Language English
    Publishing date 2023-11-29
    Publishing country United States
    Document type Journal Article
    ZDB-ID 2388888-X
    ISSN 1932-2267 ; 1932-2259
    ISSN (online) 1932-2267
    ISSN 1932-2259
    DOI 10.1007/s11764-023-01494-y
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  3. Article ; Online: Patient-Reported Outcome Measures to Improve the Care Continuum for Patients With Metastatic Breast Cancer: Opportunities and Implications for Nursing Practice.

    de Ligt, Kelly M / de Rooij, Belle H / Koppert, Linetta B / van de Poll-Franse, Lonneke V / Velikova, Galina / Cardoso, Fatima

    Seminars in oncology nursing

    2023  Volume 39, Issue 6, Page(s) 151510

    Abstract: Objectives: Albeit treatable, metastatic breast cancer (MBC) remains incurable. To achieve remaining life years lived well, extended survival should be balanced with optimal health-related quality of life (HRQoL) and timely initiated supportive, ... ...

    Abstract Objectives: Albeit treatable, metastatic breast cancer (MBC) remains incurable. To achieve remaining life years lived well, extended survival should be balanced with optimal health-related quality of life (HRQoL) and timely initiated supportive, palliative, and end-of-life care. The Advanced Breast Cancer (ABC) Global Alliance identified 10 urgent and actionable goals for the decade between 2015 and 2025 to achieve substantial improvement in the lives of patients living with ABC, including MBC. Enhancements are needed for HRQoL, research, quality of care, and survival. We explore the potential of patient-reported outcome measures (PROMs) in addressing these gaps and aim to describe opportunities and current initiatives for improving the MBC care continuum through PROMs.
    Data sources: Narrative description of recent literature on MBC and PROMs.
    Conclusion: We believe PROMs can make valuable contributions to seven of the 10 goals described: 1) enhancing the understanding of MBC through high-quality data collection, 2) improving HRQoL and raising consideration of survival versus HRQoL, 2) prolonging survival, 4) increasing referral to nonclinical support services, 5) supporting patient-healthcare provider communication, 6) encouraging improvements in healthcare access, and 7) supporting meeting patients' informational needs.
    Implications for nursing practice: Maximizing the benefits of PROMs requires effective implementation. Because nurses and nurse practitioners are at the forefront of care, they can offer a comprehensive understanding of patients' needs and play a crucial role in facilitating the integration of PROMs into routine care for MBC patients and ultimately optimizing patients' outcomes and life years and months left.
    MeSH term(s) Humans ; Female ; Breast Neoplasms/therapy ; Quality of Life ; Terminal Care ; Hospice Care ; Patient Reported Outcome Measures
    Language English
    Publishing date 2023-10-12
    Publishing country United States
    Document type Journal Article
    ZDB-ID 632682-1
    ISSN 1878-3449 ; 0749-2081
    ISSN (online) 1878-3449
    ISSN 0749-2081
    DOI 10.1016/j.soncn.2023.151510
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    Zs.B 2849: Show issues Location:
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  4. Article ; Online: Health-related quality of life after stereotactic radiosurgery in patients with brain metastases.

    Albers, Elaine A C / de Ligt, Kelly M / van de Poll-Franse, Lonneke V / Compter, Annette / de Ruiter, Michiel B / Schagen, Sanne B

    Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

    2023  Volume 31, Issue 12, Page(s) 720

    Abstract: Purpose: This study aimed to assess health-related quality of life (HRQoL) in patients with brain metastases treated with stereotactic radiosurgery (SRS) and to identify factors associated with this.: Methods: HRQoL was measured pre-SRS, at 3- and 6- ... ...

    Abstract Purpose: This study aimed to assess health-related quality of life (HRQoL) in patients with brain metastases treated with stereotactic radiosurgery (SRS) and to identify factors associated with this.
    Methods: HRQoL was measured pre-SRS, at 3- and 6-month follow-up. Physical functioning, cognitive functioning, role functioning, and fatigue were analyzed with the EORTC QLQ-C30 questionnaire. Motor dysfunction, future uncertainty, visual disorder, communication deficit, and headaches were analyzed with the EORTC QLQ-BN20. Clinically important symptom or functional impairment was assessed following set thresholds. Factors associated with impairment were identified through multivariable logistic regression analyses.
    Results: At baseline, 178 patients were included; 54% (n=96) completed questionnaires at 3 months and 39% (n=70) at 6 months. Before SRS, 29% of linear accelerator (LINAC) patients reported physical and cognitive impairment, while 25% reported impairment for fatigue. At 6 months, 39%, 43%, and 57% of LINAC patients reported impairment respectively. Forty-five percent of Gamma Knife (GK) patients reported impairment pre-SRS for physical, cognitive functioning, and fatigue. At 6 months, 48%, 43%, and 33% of GK patients reported impairment respectively. Except for role functioning, pre-SRS symptom and functioning scores were associated with impairment at 3 months, whereas scores at 3 months were associated with impairment at 6 months. Age, gender, systemic therapy, and intracranial progression were not associated with clinically important impairment.
    Conclusion: As 33-57% of patients with brain metastases reported symptom burden and functional impairments that were of clinical importance, it is recommended to pay attention to the HRQoL outcomes of these patients during clinical encounters.
    MeSH term(s) Humans ; Radiosurgery/adverse effects ; Quality of Life ; Brain Neoplasms/radiotherapy ; Brain Neoplasms/surgery ; Brain Neoplasms/pathology ; Particle Accelerators ; Fatigue/epidemiology ; Fatigue/etiology
    Language English
    Publishing date 2023-11-27
    Publishing country Germany
    Document type Journal Article
    ZDB-ID 1134446-5
    ISSN 1433-7339 ; 0941-4355
    ISSN (online) 1433-7339
    ISSN 0941-4355
    DOI 10.1007/s00520-023-08203-6
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    Zs.A 3697: Show issues Location:
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  5. Article ; Online: Potentially inappropriate end-of-life care and its association with relatives' well-being: a systematic review.

    Ham, Laurien / Slotman, Ellis / Burghout, Carolien / Raijmakers, Natasja Jh / van de Poll-Franse, Lonneke V / van Zuylen, Lia / Fransen, Heidi P

    Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

    2023  Volume 31, Issue 12, Page(s) 731

    Abstract: Purpose: Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with a poorer quality of life of patients, but research on its association with ... ...

    Abstract Purpose: Potentially inappropriate end-of-life cancer care (e.g., frequent hospital admission and emergency room visits in the last month of life) is known to be associated with a poorer quality of life of patients, but research on its association with the well-being of relatives is scarce. The aim of this systematic literature review was to evaluate the association between potentially inappropriate end-of-life cancer care and relatives' well-being.
    Methods: We conducted a systematic search and review, and reported according to the PRISMA guideline, on the association between potentially inappropriate end-of-life cancer care and well-being of relatives before and after the death of their loved one. Pubmed, PsycInfo, Embase, and CINAHL were searched for studies published from January 2000 to July 2022. Studies' quality was assessed using the Critical Appraisal Checklists from the Joanne Briggs Institute (JBI).
    Results: We identified eight studies including 10,062 relatives (59-79% female, mean age 46-61 years, 29-72% partner). Potentially inappropriate end-of-life cancer care was associated with poorer well-being of relatives including lower quality of life, higher burden of depressive symptoms, more regret, and more feelings of unpreparedness for the patient's death.
    Conclusion: Potentially inappropriate cancer care at the end-of-life is associated with poorer well-being of relatives before and after the death of their loved one. This emphasizes the importance of avoiding potentially inappropriate end-of-life cancer care, as it is both associated with poorer outcomes for relatives and patients. However, the number of studies examining this association is small, and more research is needed in this area.
    MeSH term(s) Humans ; Female ; Middle Aged ; Male ; Quality of Life ; Terminal Care ; Checklist ; Emergency Service, Hospital ; Death
    Language English
    Publishing date 2023-11-30
    Publishing country Germany
    Document type Systematic Review ; Journal Article ; Review
    ZDB-ID 1134446-5
    ISSN 1433-7339 ; 0941-4355
    ISSN (online) 1433-7339
    ISSN 0941-4355
    DOI 10.1007/s00520-023-08198-0
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    Zs.A 3697: Show issues Location:
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  6. Article ; Online: Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study.

    van Roij, Janneke / Brom, Linda / Sommeijer, Dirkje / van de Poll-Franse, Lonneke / Raijmakers, Natasja

    Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

    2021  Volume 29, Issue 12, Page(s) 7975–7984

    Abstract: Purpose: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in ... ...

    Abstract Purpose: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden.
    Methods: This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden.
    Results: Most of the 746 relatives were the patient's partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR = .87) and were less resilient (OR = .76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR = .96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR = .39).
    Conclusion: A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation.
    Trial registration number: NTR6584 (date of registration: 30 June 2017).
    MeSH term(s) Caregiver Burden ; Caregivers ; Cost of Illness ; Humans ; Neoplasms/therapy ; Prospective Studies ; Self Care
    Language English
    Publishing date 2021-07-03
    Publishing country Germany
    Document type Journal Article ; Multicenter Study ; Observational Study
    ZDB-ID 1134446-5
    ISSN 1433-7339 ; 0941-4355
    ISSN (online) 1433-7339
    ISSN 0941-4355
    DOI 10.1007/s00520-021-06365-9
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  7. Article ; Online: Financial Toxicity After Robot-Assisted Radical Prostatectomy and Its Relation with Oncologic, Functional Outcomes.

    Özman, Oktay / Tillier, Corinne N / van Muilekom, Erik / van de Poll-Franse, Lonneke V / van der Poel, Henk G

    The Journal of urology

    2022  Volume 208, Issue 5, Page(s) 978–986

    Abstract: Purpose: The aim of the study was to evaluate frequency of financial toxicity among patients who underwent robot-assisted radical prostatectomy for prostate cancer.: Materials and methods: Data of 1,479 robot-assisted radical prostatectomy patients ... ...

    Abstract Purpose: The aim of the study was to evaluate frequency of financial toxicity among patients who underwent robot-assisted radical prostatectomy for prostate cancer.
    Materials and methods: Data of 1,479 robot-assisted radical prostatectomy patients between 2006-2021 reporting no financial toxicity in preoperative assessments were included retrospectively. Financial toxicity was measured with financial impact of European Organisation for Research and Treatment of Cancer-quality of life questionnaire-C30. Financial impact scores were collected preoperatively, 6, 12, 18, and 24 months after robot-assisted radical prostatectomy.
    Results: The frequency of financial toxicity was 8.3% (122/1379; 95% CI 7.0-9.8) at any point in time throughout 2 years of follow-up. Patients reporting financial toxicity (63 [58-68]) were significantly younger than patients who had no financial toxicity (65 [61-69];
    Conclusions: Financial toxicity after robot-assisted radical prostatectomy is low in mid-term follow-up. Patients who report urological symptoms after robot-assisted radical prostatectomy should also be evaluated for financial toxicity. Required measures against financial toxicity should be taken especially in the follow-up of younger cancer survivors.
    MeSH term(s) Humans ; Male ; Prostate ; Prostatectomy/adverse effects ; Prostatic Neoplasms/surgery ; Quality of Life ; Retrospective Studies ; Robotic Surgical Procedures/adverse effects ; Robotics ; Urinary Incontinence/diagnosis
    Language English
    Publishing date 2022-11-01
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 3176-8
    ISSN 1527-3792 ; 0022-5347
    ISSN (online) 1527-3792
    ISSN 0022-5347
    DOI 10.1097/JU.0000000000002897
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  8. Article ; Online: Sexual health and closeness in couples coping with advanced cancer: Results of a multicenter observational study (eQuiPe).

    van Roij, Janneke / Raijmakers, Natasja / Johnsen, Anna Thit / Hansen, Maiken Bang / Thijs-Visser, Martine / van de Poll-Franse, Lonneke

    Palliative medicine

    2022  Volume 36, Issue 4, Page(s) 698–707

    Abstract: Background: Cancer and its treatment can severely affect sexual health. It is unknown how this may relate to the feelings of closeness between patients and their partners.: Aim: To assess the association between sexual health and closeness in the ... ...

    Abstract Background: Cancer and its treatment can severely affect sexual health. It is unknown how this may relate to the feelings of closeness between patients and their partners.
    Aim: To assess the association between sexual health and closeness in the relationship in couples coping with advanced cancer.
    Design: This study was part of a prospective multicentre longitudinal observational cohort study on experienced quality of care and quality of life in patients with advanced cancer and their relatives (eQuiPe).
    Setting/participants: Baseline data regarding sexual health and closeness in people with advanced cancer and their partners.
    Results: Out of the 566 dyads, 14 were same-sex couples. Especially male partners showed an interest in sex, but more than half of all patients and partners were not sexually active. Approximately one third experienced sexual dysfunction to be a problem but did not seek specialized support (<10%). There was a positive association between own sexual satisfaction and feelings of closeness in the relationship, which was stronger for partners compared to patients (
    Conclusions: Couples coping with advanced cancer clearly face challenges regarding sexual health but are not likely to seek specialized support. When discussing sexual health, it is crucial that health care professionals pay attention to the aspects of sexual health that may contribute to feeling close to each other and suggest specialized care if necessary.
    Trial registration: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.
    MeSH term(s) Adaptation, Psychological ; Humans ; Male ; Neoplasms ; Prospective Studies ; Quality of Life ; Sexual Health ; Sexual Partners
    Language English
    Publishing date 2022-02-20
    Publishing country England
    Document type Journal Article ; Multicenter Study ; Observational Study ; Research Support, Non-U.S. Gov't
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163221074541
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    Zs.A 2285: Show issues Location:
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  9. Article ; Online: Communication, perception, and use of personalized side-effect risks in prostate cancer treatment-decision making: An observational and interview study.

    Vromans, Ruben D / Tillier, Corinne N / Pauws, Steffen C / van der Poel, Henk G / van de Poll-Franse, Lonneke V / Krahmer, Emiel J

    Patient education and counseling

    2022  Volume 105, Issue 8, Page(s) 2731–2739

    Abstract: Objective: We investigated how healthcare professionals (HPs) communicate personalized risks of treatment side-effects to patients with localized prostate cancer during consultations, and explored how these patients perceive and use such risks during ... ...

    Abstract Objective: We investigated how healthcare professionals (HPs) communicate personalized risks of treatment side-effects to patients with localized prostate cancer during consultations, and explored how these patients perceive and use such risks during treatment decision-making.
    Methods: Patient consultations with nurse practitioners and urologists discussing personalized risks of urinary incontinence after prostatectomy were audiotaped, transcribed, and coded. Patients (n = 27) were then interviewed to explore their perceptions and use of personalized side-effect risks.
    Results: HPs explained personalized risks by discussing risk factors, which was appreciated and recalled by patients. Personalized risks were typically communicated both numerically and verbally (70%). When using numbers, HPs always used percentages, but rarely used natural frequencies (14%). Uncertainty was disclosed in only 34% of consultations. One-third of patients used personalized risks in their treatment decision-making by either switching to another treatment or sticking to their initial preference.
    Conclusions: Patients value and use personalized side-effect risks during treatment decision-making. Clearly explaining the relationship between risk factors and personalized risk estimates may help patients understand and recall those. Practice implications HPs should not only give patients specific and precise numerical risk information, but should also put effort in explaining how the personalized side-effect risks are determined.
    MeSH term(s) Communication ; Decision Making ; Humans ; Male ; Perception ; Prostatic Neoplasms/therapy ; Qualitative Research
    Language English
    Publishing date 2022-05-04
    Publishing country Ireland
    Document type Journal Article ; Observational Study ; Research Support, Non-U.S. Gov't
    ZDB-ID 605590-4
    ISSN 1873-5134 ; 0738-3991
    ISSN (online) 1873-5134
    ISSN 0738-3991
    DOI 10.1016/j.pec.2022.04.017
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  10. Article ; Online: Correction to: Phase III study of the European Organisation for Research and Treatment of Cancer Quality of Life cancer survivorship core questionnaire.

    van Leeuwen, Marieke / Kieffer, Jacobien M / Young, Teresa E / Aaronson, Neil K / van de Poll-Franse, Lonneke V

    Journal of cancer survivorship : research and practice

    2022  Volume 18, Issue 2, Page(s) 634

    Language English
    Publishing date 2022-02-25
    Publishing country United States
    Document type Published Erratum
    ZDB-ID 2388888-X
    ISSN 1932-2267 ; 1932-2259
    ISSN (online) 1932-2267
    ISSN 1932-2259
    DOI 10.1007/s11764-022-01199-8
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