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  • 1
    Online Resource
    Online Resource
    Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research : Oxford, UK. 8th June 2017
    Springer Science and Business Media LLC ; 2017
    In:  Health and Quality of Life Outcomes Vol. 15, No. S1 ( 2017-10)
    Details
    In: Health and Quality of Life Outcomes, Springer Science and Business Media LLC, Vol. 15, No. S1 ( 2017-10)
    Type of Medium: Online Resource
    ISSN: 1477-7525
    URL: Article
    DOI: 10.1186/s12955-017-0757-y
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2017
    detail.hit.zdb_id: 2098765-1
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  • 2
    Online Resource
    Online Resource
    Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it’s all the aftermath, and then you’re forgotten about”
    Springer Science and Business Media LLC ; 2021
    In:  Supportive Care in Cancer Vol. 29, No. 11 ( 2021-11), p. 6315-6324
    Details
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 29, No. 11 ( 2021-11), p. 6315-6324
    Abstract: Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support. Methods Face-to-face semi-structured interviews were conducted with survivors aged 16–30 ( n = 11) who were ≥ 5 years after diagnosis and caregivers ( n = 11). Interviews were recorded and transcriptions thematically analysed. Results Four themes emerged: (1) preferences for support and support services (unmet needs) . Concerns regarding mental health, employment and financial uncertainty, the desire to live independently, and lack of support were emphasised. (2) Decline in support . Caregivers noted a drop-off in support available when transitioning to adult services. (3) Reasons for not obtaining adequate support . Several barriers to accessing support were raised, including distance and aging out of services. (4) The role of long-term hospital-based follow-up care . Participants highlighted the importance of, and reassurance from, long-term follow-up care but noted a more all-inclusive approach is required. Conclusions Even many years after diagnosis, TYA childhood brain tumour survivors and their caregivers continue to have unmet supportive care needs. Both TYA survivors and their caregivers can benefit from support to meet their unique needs and improve long-term quality of life. Understanding unmet needs and recognising what services are required due to the late effects of treatment is critical to improving long-term quality of survival.
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    URL: Article
    DOI: 10.1007/s00520-021-06193-x
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2021
    detail.hit.zdb_id: 1463166-0
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  • 3
    Online Resource
    Online Resource
    Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey
    Springer Science and Business Media LLC ; 2022
    In:  Supportive Care in Cancer Vol. 30, No. 3 ( 2022-03), p. 1981-1992
    Details
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 30, No. 3 ( 2022-03), p. 1981-1992
    Abstract: The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL). Methods Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC). Results In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. Conclusion This research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    URL: Article
    DOI: 10.1007/s00520-021-06618-7
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 1463166-0
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  • 4
    Online Resource
    Online Resource
    Factors influencing patient satisfaction after treatments for early-stage non-small cell lung cancer
    Springer Science and Business Media LLC ; 2022
    In:  Journal of Cancer Research and Clinical Oncology Vol. 148, No. 9 ( 2022-09), p. 2447-2454
    Details
    In: Journal of Cancer Research and Clinical Oncology, Springer Science and Business Media LLC, Vol. 148, No. 9 ( 2022-09), p. 2447-2454
    Abstract: Patient-reported outcome measures, including satisfaction with treatment decisions, provide important information in addition to clinical outcomes, survival and decision-making in lung cancer surgery. We investigated associations between preoperative clinical and socio-demographic factors and patient-reported satisfaction 6 weeks after radical treatment for early-stage non-small cell lung cancer (NSCLC). Methods We conducted a sub-group analysis of the prospective observational longitudinal study of 225 participants in two treatment groups—surgical (VATS) and radiotherapy (SABR). The Patient Satisfaction Questionnaire-18 (PSQ-18) was used to measure patient satisfaction 6 weeks after treatment. Clinical variables, Index of Multiple Deprivation decile and Decision self-efficacy scores were used in regression analysis. Variables with a p level  〈  0.1 were used as independent predictors in generalised linear logistic regression analyses. Results As expected, the two groups differed in pre-treatment clinical features. The SABR group experienced more grade 1–2 complications than the VATS group. No differences were found between the groups in any subscale of the PSQ-18 questionnaire. Patients experiencing complications or living in more deprived areas were more satisfied with care. Properative factors independently associated with patient satisfaction were the efficacy in decision-making and age. Conclusion We showed that efficacy in treatment decision-making and age was the sole predictor of patient satisfaction with their care after radical treatment for early-stage NSCLC. Patients from more deprived areas and patients who suffered complications reported greater subsequent satisfaction. Involving patients in their care may improve satisfaction after treatment for early-stage NSCLC.
    Type of Medium: Online Resource
    ISSN: 0171-5216 , 1432-1335
    URL: Article
    DOI: 10.1007/s00432-021-03795-0
    RVK:
    XA 52301
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 1459285-X
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  • 5
    Online Resource
    Online Resource
    Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust
    Elsevier BV ; 2016
    In:  Journal of Clinical Epidemiology Vol. 69 ( 2016-01), p. 79-88
    Details
    In: Journal of Clinical Epidemiology, Elsevier BV, Vol. 69 ( 2016-01), p. 79-88
    Type of Medium: Online Resource
    ISSN: 0895-4356
    URL: Article
    DOI: 10.1016/j.jclinepi.2015.08.007
    RVK:
    XA 52630
    Language: English
    Publisher: Elsevier BV
    Publication Date: 2016
    detail.hit.zdb_id: 1500490-9
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  • 6
    Online Resource
    Online Resource
    Coverage of symptomatic toxicities from the common terminology criteria for adverse events (CTCAE) framework within the european organization for research and treatment of cancer (EORTC) item library.
    American Society of Clinical Oncology (ASCO) ; 2021
    In:  Journal of Clinical Oncology Vol. 39, No. 15_suppl ( 2021-05-20), p. e24117-e24117
    Details
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 39, No. 15_suppl ( 2021-05-20), p. e24117-e24117
    Abstract: e24117 Background: The EORTC Item Library is an online, interactive platform comprised of 950 distinct questions (items) from 67 different EORTC patient-reported outcome (PRO) questionnaires, covering a range of symptomatic toxicities, types of functioning, and impact on quality of life. These PROs provide a patient-centred perspective, complementing clinician adverse event (AE) reporting using classifications like the CTCAE. In order to summarize the coverage of symptomatic toxicities and facilitate the identification of items through use of a standardized framework, a mapping study was carried out, aimed at creating a coding system to classify EORTC items according to the CTCAE and link them to corresponding AEs. Methods: All items were searched for within the CTCAE (v5.0) using a deductive approach. Items were coded as linked if they were described within an AE’s title, description, or grading. Items not suitable for CTCAE coding were inductively assigned a descriptive classification. Descriptive classifications were also applied along with CTCAE codes when they provided additional information. Symptoms described in EORTC items but not located in the CTCAE were coded as missing and additional codes were assigned to highlight EORTC items capturing multiple underlying issues and diagnosis only CTCAE codes. Two raters independently coded 249 items and agreement was calculated. The remaining 701 items were coded by one rater and verified by the second, with a third introduced to discuss any discrepancies until a consensus was reached. Results: Agreement for raters following independent coding was 77.9% for at least one AE per item. In total, 625 (65.8%) items were linked to 208 different AEs. Fatigue was the most commonly linked AE, representing 4.9% of linked AEs. The majority of linked items were associated with one (65.6%) or two (23.5%) AEs, with some linked to three or more (10.9%). Multiple linkage resulted from different symptoms relating to the same issue/diagnosis or one symptom relating to multiple diagnoses. Two symptoms captured by six EORTC items but not found in the CTCAE were identified: bowel urgency and tenesmus. Seven descriptive non-CTCAE classifications emerged, with most of these covering the emotional impact of symptom, diagnosis, or treatment (33.6%) and information/satisfaction with care (31.7%). Nineteen items (2%) were linked to multiple underlying issues, and 43 (4.5%) to diagnosis only CTCAE codes. Conclusions: The EORTC Item Library provides extensive coverage of CTCAE symptomatic toxicities, along with other issues that are important to cancer patients, including emotional well-being and satisfaction with care services. Classifying symptomatic PRO items following the CTCAE clinical framework may facilitate future PRO selection and use in clinical trials and routine care.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    URL: Article
    DOI: 10.1200/JCO.2021.39.15_suppl.e24117
    RVK:
    XA 52760
    RVK:
    XA 10000
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2021
    detail.hit.zdb_id: 2005181-5
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  • 7
    Online Resource
    Online Resource
    Phase III Randomized Controlled Trial of eRAPID: eHealth Intervention During Chemotherapy
    American Society of Clinical Oncology (ASCO) ; 2021
    In:  Journal of Clinical Oncology Vol. 39, No. 7 ( 2021-03-01), p. 734-747
    Details
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 39, No. 7 ( 2021-03-01), p. 734-747
    Abstract: Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID) is an online eHealth system for patients to self-report symptoms during cancer treatment. It provides automated severity-dependent patient advice guiding self-management or medical contact and displays the reports in electronic patient records. This trial evaluated the impact of eRAPID on symptom control, healthcare use, patient self-efficacy, and quality of life (QOL) in a patient population treated predominantly with curative intent. METHODS Patients with colorectal, breast, or gynecological cancers commencing chemotherapy were randomly assigned to usual care (UC) or the addition of eRAPID (weekly online symptom reporting for 18 weeks). Primary outcome was symptom control (Functional Assessment of Cancer Therapy-General, Physical Well-Being subscale [FACT-PWB]) assessed at 6, 12, and 18 weeks. Secondary outcomes were processes of care (admissions or chemotherapy delivery), patient self-efficacy, and global quality of life (Functional Assessment of Cancer Therapy–General, EQ5D-VAS, and EORTC QLQ-C30 summary score). Multivariable mixed-effects repeated-measures models were used for analyses. Trial registration: ISRCTN88520246. RESULTS Participants were 508 consenting patients (73.6% of 690 eligible) and 55 health professionals. eRAPID compared to UC showed improved physical well-being at 6 ( P = .028) and 12 ( P = .039) weeks and no difference at 18 weeks (primary end point) ( P = .69). Fewer eRAPID patients (47%) had clinically meaningful physical well-being deterioration than UC (56%) at 12 weeks. Subgroup analysis found benefit in the nonmetastatic group at 6 weeks ( P = .0426), but not in metastatic disease. There were no differences for admissions or chemotherapy delivery. At 18 weeks, patients using eRAPID reported better self-efficacy ( P = .007) and better health on EQ5D-VAS ( P = .009). Average patient compliance with weekly symptom reporting was 64.7%. Patient adherence was associated with clinician's data use and improved FACT-PWB at 12 weeks. CONCLUSION Real-time monitoring with electronic patient-reported outcomes improved physical well-being (6 and 12 weeks) and self-efficacy (18 weeks) in a patient population predominantly treated with curative intent, without increasing hospital workload.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    URL: Article
    DOI: 10.1200/JCO.20.02015
    RVK:
    XA 52760
    RVK:
    XA 10000
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2021
    detail.hit.zdb_id: 2005181-5
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  • 8
    Online Resource
    Online Resource
    Optimizing chemotherapy for frail and elderly patients (pts) with advanced gastroesophageal cancer (aGOAC): The GO2 phase III trial.
    American Society of Clinical Oncology (ASCO) ; 2019
    In:  Journal of Clinical Oncology Vol. 37, No. 15_suppl ( 2019-05-20), p. 4006-4006
    Details
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 37, No. 15_suppl ( 2019-05-20), p. 4006-4006
    Abstract: 4006 Background: Many pts with aGOAC are elderly and/or frail. We previously compared epirubin/ oxaliplatin/ capecitabine (EOCap) vs OCap vs Cap in a pick-the-winner study and found OCap best. GO2 was designed to find the optimum dose of OCap and to explore the use of an objective baseline geriatric assessment to individualize doses for maximum Overall Treatment Utility (OTU), a composite of clinical benefit, tolerability, QL and patient value. Methods: Pts with aGOAC were eligible if unsuitable for full-dose EOCap due to age or frailty, but fit for OCap; GFR ≥ 30, bili 〈 2x ULN. Baseline assessment included global QL; symptoms; functional scales; comorbidity; frailty. Randomization was 1:1:1 to dose Level A (Ox 130 mg/m 2 d1, Cap 625 mg/m 2 bd d1-21, q21d), B (80% Level A doses) or C (60% Level A doses). Pts with GFR 30-50 ml/min or bili 1.5-2.0 xULN received 75% of the allocated dose of Cap. At 9 wks, pts were scored for OTU. Continuation thereafter was based on clinical judgement. Non-inferiority (vs A) was assessed using PFS censored at 12 months, with boundary HR 1.34 (based on discussion with pts and clinicians), needing 284 PFS events per 2-way comparison. Baseline fitness was assessed as predictive of OTU, overall and by interaction with dose level. Results: 514 pts were randomised, 2014-17, at 61 UK centres. Clinical trial information: 44687907. Non-inferiority of PFS is confirmed for Level B vs A (HR 1.09, CI 0.89-1.32) and for Level C vs A (HR 1.10, CI 0.90-1.33). Level C pts had less toxicity and better OTU outcomes than A or B. When analysed by baseline age, frailty and PS, Level C produced the best OTU even in younger, less frail and better PS patients; no group was identified who benefit more from the higher dose levels. Conclusions: This is the largest RCT to date specifically investigating frail and/or elderly aGOAC pts, and should guide future treatment. The lowest dose tested was non-inferior in terms of PFS and produced less toxicity and better overall treatment utility.[Table: see text]
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    URL: Article
    DOI: 10.1200/JCO.2019.37.15_suppl.4006
    RVK:
    XA 52760
    RVK:
    XA 10000
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2019
    detail.hit.zdb_id: 2005181-5
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  • 9
    Online Resource
    Online Resource
    Reply to H. Shojima et al
    American Society of Clinical Oncology (ASCO) ; 2021
    In:  Journal of Clinical Oncology Vol. 39, No. 23 ( 2021-08-10), p. 2633-2634
    Details
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 39, No. 23 ( 2021-08-10), p. 2633-2634
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    URL: Article
    DOI: 10.1200/JCO.21.00684
    RVK:
    XA 52760
    RVK:
    XA 10000
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2021
    detail.hit.zdb_id: 2005181-5
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  • 10
    Online Resource
    Online Resource
    Patients’ views of routine quality of life assessment following a diagnosis of early-stage non-small cell lung cancer
    Oxford University Press (OUP) ; 2020
    In:  Interactive CardioVascular and Thoracic Surgery Vol. 31, No. 3 ( 2020-09-01), p. 324-330
    Details
    In: Interactive CardioVascular and Thoracic Surgery, Oxford University Press (OUP), Vol. 31, No. 3 ( 2020-09-01), p. 324-330
    Abstract: There is an increasing interest in the quality of life (QoL) evaluation following video-assisted thoracoscopic anatomical lung resection or stereotactic ablative body radiotherapy for early-stage non-small-cell lung cancer (NSCLC). A qualitative interview study was conducted to gain insight into the optimal methods of assessing and discussing QoL in clinical practice. METHODS A prospective observational longitudinal study of patients with early-stage NSCLC was conducted where repeated QoL measures were administered either online or on paper. A subset of participants was invited for qualitative interviews after the 6-month assessment or at the end of the study. The semi-structured interviews were transcribed verbatim and thematically analysed. RESULTS Twenty-three patients were interviewed. Generally, patients were content with recruitment and data collection procedures. Most opted to complete the assessments on paper instead of online; this choice was influenced by the level of technology literacy. Some found the questionnaires too generic to reflect their experiences. Barriers to questionnaire completion were mostly practical, and many acknowledged benefits of QoL assessment including allowing them to express problems and health issues, and following changes over time. Generally, participants would like to discuss QoL results during clinical consultations, but reported this rarely happened. CONCLUSIONS Lung cancer patient interviews confirm the acceptability of repeated QoL assessments, but online data capture is limited. Patients highlight the importance of discussing QoL aspects with their clinical team. Future strategies are needed to optimize the routine collection of patient-reported outcomes in clinical practice.
    Type of Medium: Online Resource
    ISSN: 1569-9285
    URL: Article
    DOI: 10.1093/icvts/ivaa123
    Language: English
    Publisher: Oxford University Press (OUP)
    Publication Date: 2020
    detail.hit.zdb_id: 2096257-5
    detail.hit.zdb_id: 3167862-2
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