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Article ; Online: EORTC QLQ-C30 normative data for the United Kingdom: Results of a cross-sectional survey of the general population.

Young, Teresa / Velikova, Galina / Liegl, Gregor / Rose, Matthias / Nolte, Sandra

European journal of cancer (Oxford, England : 1990)

2024 Volume 204, Page(s) 113927

Abstract: Objective: The cancer-specific health-related quality of life (HRQoL) questionnaire of the European Organisation for Research and Treatment of Cancer (EORTC), the EORTC QLQ-C30, is a frequently applied questionnaire to assess cancer patients' self- ... ...

Abstract	Objective: The cancer-specific health-related quality of life (HRQoL) questionnaire of the European Organisation for Research and Treatment of Cancer (EORTC), the EORTC QLQ-C30, is a frequently applied questionnaire to assess cancer patients' self-reported health used as part of research and clinical practice. Normative data obtained from the general population can facilitate the interpretation of these data. Despite its frequent application, no detailed EORTC QLQ-C30 normative data have yet been published for the United Kingdom (UK). This study presents detailed EORTC QLQ-C30 normative data for the United Kingdom overall and by sex and age. Methods: The data are drawn from a larger published, international, cross-sectional online survey. For the recruitment, the sample was stratified by sex (males, females) and age in five age groups with a sample size of n = 100 per subgroup. Results: A total of N = 1026 UK respondents completed the survey (n = 517 females, n = 509 males). There were no clear subgroup patterns by sex or age; however, older patients tended to show higher (i.e., better) scores in emotional and social functioning; they also reported some of the lowest (i.e., best) scores for symptoms, such as insomnia, appetite loss, diarrhoea, nausea/vomiting or financial difficulties. Conclusion: This paper provides EORTC QLQ-C30 general population normative data for the UK, further stratified by sex and age. These data will greatly support the interpretation of EORTC QLQ-C30 scale scores obtained from UK cancer patients, and also enable comparison with other detailed national normative datasets collected in the same project, across several other European countries and the US.
MeSH term(s)	Humans ; Male ; Female ; Cross-Sectional Studies ; United Kingdom/epidemiology ; Quality of Life ; Middle Aged ; Adult ; Neoplasms/psychology ; Neoplasms/epidemiology ; Neoplasms/therapy ; Aged ; Young Adult ; Surveys and Questionnaires ; Adolescent ; Age Factors ; Aged, 80 and over ; Health Status
Language	English
Publishing date	2024-02-17
Publishing country	England
Document type	Journal Article
ZDB-ID	82061-1
ISSN	1879-0852 ; 0277-5379 ; 0959-8049 ; 0964-1947
ISSN (online)	1879-0852
ISSN	0277-5379 ; 0959-8049 ; 0964-1947
DOI	10.1016/j.ejca.2024.113927
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Article ; Online: Acupuncture in the real world: evaluating a 15-year NADA auricular acupuncture service for breast cancer survivors experiencing hot flushes and night sweats as a consequence of adjuvant hormonal therapies.

de Valois, Beverley / Young, Teresa / Thorpe, Pam / Degun, Tarsem / Corbishley, Karen

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

2022 Volume 30, Issue 6, Page(s) 5063–5074

Abstract: Purpose: While clinical trials provide valuable data about efficacy of interventions, findings often do not translate into clinical settings. We report real world clinical outcomes of a 15-year service offering breast cancer survivors auricular ... ...

Abstract	Purpose: While clinical trials provide valuable data about efficacy of interventions, findings often do not translate into clinical settings. We report real world clinical outcomes of a 15-year service offering breast cancer survivors auricular acupuncture to manage hot flushes and night sweats (HFNS) associated with adjuvant hormonal treatments. This service evaluation aims to (1) assess whether usual practice alleviates symptoms in a clinically meaningful way and (2) compare these results with scientific evidence. Methods: Data were analysed from 415 referrals to a service offering women eight standardised treatments using the National Acupuncture Detoxification Association (NADA) protocol. Outcome measures administered at baseline, end of treatment (EOT), and 4 and 18 weeks after EOT included hot flush diaries, hot flush rating scale (HFRS) and women's health questionnaire (WHQ). Results: Over 2285 treatments were given to 300 women; 275 (92.3%) completed all eight treatments. Median daily frequency of HFNS reduced from 9.6 (IQR 7.3) to 5.7 (IQR 5.8) at EOT and 6.3 (IQR 6.5) 18 weeks after EOT. HFRS problem rating showed a clinically meaningful reduction of ≥ 2 points at all measurement points. WHQ showed improvements in several symptoms associated with the menopause. Two adverse events were reported, neither were serious. Results are comparable to published research. Conclusion: This first analysis of a long-term auricular acupuncture service compares favourably with outcomes of other studies for reducing HFNS frequency and associated menopausal symptoms. In day-to-day clinical practice, NADA appears to be a safe effective intervention for breast cancer survivors.
MeSH term(s)	Acupuncture Therapy/methods ; Acupuncture, Ear ; Breast Neoplasms/complications ; Breast Neoplasms/drug therapy ; Cancer Survivors ; Female ; Hemorrhagic Fever with Renal Syndrome/complications ; Hot Flashes/etiology ; Hot Flashes/therapy ; Humans ; Male ; Menopause ; Sweat ; Sweating
Language	English
Publishing date	2022-02-26
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/s00520-022-06898-7
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Zs.A 3697: Show issues

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Article ; Online: Acupuncture in cancer care: recommendations for safe practice (peer-reviewed expert opinion).

de Valois, Beverley / Young, Teresa / Zollman, Catherine / Appleyard, Ian / Ben-Arye, Eran / Cummings, Mike / Green, Ruth / Hoffman, Caroline / Lacey, Judith / Moir, Felicity / Peckham, Rachel / Stringer, Jacqui / Veleber, Susan / Weitzman, Matthew / Wode, Kathrin

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

2024 Volume 32, Issue 4, Page(s) 229

Abstract: Background: Up-to-date recommendations for the safe practice of acupuncture in integrative oncology are overdue with new cancer treatments and an increase in survivors with late effects of disease; 17 years have elapsed since Filshie and Hester's 2006 ... ...

Abstract	Background: Up-to-date recommendations for the safe practice of acupuncture in integrative oncology are overdue with new cancer treatments and an increase in survivors with late effects of disease; 17 years have elapsed since Filshie and Hester's 2006 guidelines. During 2022/2023 an expert panel assembled to produce updated recommendations aiming to facilitate safe and appropriate care by acupuncturists working with people with cancer. Methods: A core development team comprising three integrative oncology professionals comprehensively updated pre-existing unpublished recommendations. Twelve invited international experts (senior acupuncturists with and without experience of working in oncology settings, oncologists, physicians and nurses trained in integrative oncology, researchers, academics, and professional body representatives) reviewed the recommendations. In multiple iterations, the core team harmonised comments for final ratification. To aid dissemination and uptake the panel represents national and international integrative oncology associations and major cancer treatment centres in Europe, USA, Australia, and the Middle East. Results: These recommendations facilitate safe care by articulating contra-indications, cautions, and risks for patients both on and off treatment (surgery, SACT, radiotherapy). Situations where acupuncture may be contra-indicated or practices need adapting are identified. "Red and Amber Flags" highlight where urgent referral is essential. Conclusion: These are the first international, multidisciplinary peer-reviewed recommendations for safe acupuncture practice in integrative oncology. Concerns about safety remain a significant barrier to appropriate referral from oncology teams, to use by acupuncturists and to uptake by patients. Disseminating trustworthy, widely accessible guidance should facilitate informed, confident practice of acupuncture in and outside of oncology healthcare settings.
MeSH term(s)	Humans ; Expert Testimony ; Acupuncture Therapy ; Acupuncture ; Neoplasms/therapy ; Medical Oncology
Language	English
Publishing date	2024-03-14
Publishing country	Germany
Document type	Journal Article ; Review
ZDB-ID	1134446-5
ISSN	1433-7339 ; 0941-4355
ISSN (online)	1433-7339
ISSN	0941-4355
DOI	10.1007/s00520-024-08386-6
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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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Article ; Online: Development of an EORTC Item Bank for Computer-Adaptive Testing of Nausea and Vomiting.

Puskulluoglu, Mirosława / Petersen, Morten Aa / Holzner, Bernhard / Kemmler, Georg / Velikova, Galina / Young, Teresa / Tomaszewska, Iwona / Groenvold, Mogens

Seminars in oncology nursing

2022 Volume 38, Issue 6, Page(s) 151341

Abstract: Objectives: Nausea and vomiting (NV) remain common cancer symptoms and frequent side effects of anticancer therapies despite available antiemetics. They can lead to treatment disruption and discontinuation. NV is an important patient reported outcome in ...

Abstract	Objectives: Nausea and vomiting (NV) remain common cancer symptoms and frequent side effects of anticancer therapies despite available antiemetics. They can lead to treatment disruption and discontinuation. NV is an important patient reported outcome in oncology. This study aimed to build an item bank for computer-adaptive testing (CAT) based on NV questions in the European Organisation for Research for Treatment of Cancer, Quality of Life for Cancer Patients (EORTC QLQ-C30) questionnaire and complete the first three phases of development as described in the EORTC Quality of Life Group guidelines. Data sources: The development followed a standard procedure. The three phases include conceptualization and literature search (phase 1); item classification, selection, formulation and rating, and expert evaluations (phase 2); and patient pretesting (phase 3). The literature search resulted in a preliminary list of 115 items. Following classification, formulation, and rating, 21 candidate items adhered to the QLQ-C30 format. Evaluation by experts (n = 11) from five countries and patients (n = 31) pretesting in Denmark, Poland, and the UK lead to a final list of 20 items. Conclusion: The selection, development, and refining of NV items have been described. The nature of this testing ensures an initial CAT item bank that after field testing (phase 4) and psychometric analysis is expected to provide a precise and efficient NV measurement while still being comparable to the original QLQ-C30 scale. Implications for nursing practice: Access to reliable tools that facilitate NV comprehensive assessment is an important issue for nurses caring for patients with cancer. This CAT item bank is meant to support clinical decisions when all phases of testing are completed.
MeSH term(s)	Humans ; Quality of Life ; Psychometrics/methods ; Computers ; Neoplasms/complications ; Neoplasms/drug therapy ; Neoplasms/diagnosis ; Nausea ; Vomiting
Language	English
Publishing date	2022-10-22
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.2022.151341
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Zs.B 2849: Show issues

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Article ; Online: Content comparison of the EORTC CAT Core, SF-36, FACT-G, and PROMIS role and social functioning measures based on the International Classification of Functioning, Disability and Health.

Pilz, Micha J / Rothmund, Maria / Lidington, Emma / Piccinin, Claire / Arraras, Juan I / Groenvold, Mogens / Holzner, Bernhard / van Leeuwen, Marieke / Petersen, Morten Aa / Schmidt, Heike / Young, Teresa / Giesinger, Johannes M

Psycho-oncology

2023 Volume 32, Issue 9, Page(s) 1372–1384

Abstract: Objectives: In line with the World Health Organizations' health definition, patient-reported outcome (PRO) measures frequently cover aspects of social health. Our study aimed to evaluate the role functioning (RF) and social functioning (SF) contents ... ...

Abstract	Objectives: In line with the World Health Organizations' health definition, patient-reported outcome (PRO) measures frequently cover aspects of social health. Our study aimed to evaluate the role functioning (RF) and social functioning (SF) contents assessed by PRO measures commonly used in cancer patients. Methods: We analysed the item content of the SF and RF domains of the EORTC CAT Core, the EORTC QLQ-C30, the SF-36, and the FACT-G as well as the PROMIS item bank covering the Ability to Participate in Social Roles and Activities. Following an established methodology we linked item content to the International Classification of Functioning, Disability and Health (ICF) framework. Results: The content of 85 items was assigned to three ICF components ('Activities and Participation', 'Body Functions', and 'Environmental Factors'). The EORTC CAT Core RF items were mostly related to the first-level ICF categories 'Domestic life' and 'Community, social and civic life', while its SF item bank focused on 'Interpersonal interactions and relationships'. These three categories were also covered by the PROMIS social participation item bank. The FACT-G Social/Family scale focused on environmental factors ('Support and Relationships' and 'Attitudes') while the SF-36 Role-physical/emotional scales had a stronger focus on 'General tasks and demands' and 'Major life areas'. Conclusions: Our results highlight conceptual overlap and differences among PRO measures for the assessment of social health in cancer. This information may help to select the most appropriate measure for a specific setting or study purpose and to better understand the possibilities of linking scores across different PRO measures.
MeSH term(s)	Humans ; International Classification of Functioning, Disability and Health ; Disability Evaluation ; Social Interaction ; Disabled Persons ; Neoplasms ; Activities of Daily Living ; Quality of Life
Language	English
Publishing date	2023-07-25
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1118536-3
ISSN	1099-1611 ; 1057-9249
ISSN (online)	1099-1611
ISSN	1057-9249
DOI	10.1002/pon.6188
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Zs.A 3550: Show issues

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Article ; Online: Patient-reported outcome measures for emotional functioning in cancer patients: Content comparison of the EORTC CAT Core, FACT-G, HADS, SF-36, PRO-CTCAE, and PROMIS instruments.

Rothmund, Maria / Pilz, Micha J / Egeter, Nathalie / Lidington, Emma / Piccinin, Claire / Arraras, Juan I / Grønvold, Mogens / Holzner, Bernhard / van Leeuwen, Marieke / Petersen, Morten Aa / Schmidt, Heike / Young, Teresa / Giesinger, Johannes M

Psycho-oncology

2023 Volume 32, Issue 4, Page(s) 628–639

Abstract: Background: Cancer and its treatment can have substantial impact on patients' emotional functioning. Several patient-reported outcome measures (PROMs) assessing emotional functioning are available, but differences in content limit the comparability of ... ...

Abstract	Background: Cancer and its treatment can have substantial impact on patients' emotional functioning. Several patient-reported outcome measures (PROMs) assessing emotional functioning are available, but differences in content limit the comparability of results. To better understand conceptual (dis)similarities, we conducted a content comparison of commonly used PROMs. Methods: We included emotional functioning items, scales, and item banks from the EORTC CAT Core, EORTC QLQ-C30, FACT-G, Hospital anxiety and depression scale (HADS), SF-36, PRO-CTCAE, and PROMIS (item banks for anxiety, depression, and anger). Item content was linked to the International Classification of Functioning, Disability, and Health (ICF) and a hierarchical framework established for PROMIS. Single items could be coded with more than one ICF category but were solely assigned to one facet within the PROMIS framework. Results: The measures comprise 132 unique items covering the ICF components 'Body functions' (136/153 codings, 88.9%) and 'Activities and participation' (15/153, 9.8%). Most ICF codings (112/153, 73.2%) referred to the third-level category 'b1528 Emotional functions, other specified'. According to the PROMIS framework 48.5% of the items assessed depression (64/132 items), followed by anxiety (41/132, 31.1%) and anger (26/132, 19.7%). The EORTC measures covered depression, anxiety, and anger in a single measure, while the PROMIS inventory provides separate item banks for these concepts. The FACT-G, SF-36, PRO-CTCAE and HADS covered depression and anxiety, but not anger. Conclusion: Our results provide an in-depth conceptual understanding of selected PROMs and important qualitative information going beyond psychometric evidence. Such information supports the identification of PROMs for which scores can be meaningfully linked with quantitative methods.
MeSH term(s)	Humans ; Quality of Life/psychology ; Emotions ; Anxiety ; Patient Reported Outcome Measures ; Neoplasms/therapy ; Neoplasms/psychology ; Psychometrics ; Surveys and Questionnaires
Language	English
Publishing date	2023-02-19
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	1118536-3
ISSN	1099-1611 ; 1057-9249
ISSN (online)	1099-1611
ISSN	1057-9249
DOI	10.1002/pon.6109
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Zs.A 3550: Show issues

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Article ; Online: Equipercentile equating of scores from common patient-reported outcome measures of physical function in patients with cancer.

Rothmund, Maria / Pilz, Micha J / Schlosser, Lisa / Arraras, Juan I / Groenvold, Mogens / Holzner, Bernhard / van Leeuwen, Marieke / Petersen, Morten Aa / Schmidt, Heike / Young, Teresa / Rose, Matthias / Cella, David / Giesinger, Johannes M

Journal of clinical epidemiology

2023 Volume 165, Page(s) 111203

Abstract: Objective: To provide equipercentile equating of physical function (PF) scores from frequently used patient-reported outcome measures (PROMs) in cancer patients to facilitate data pooling and comparisons.: Study design and setting: Adult cancer ... ...

Abstract	Objective: To provide equipercentile equating of physical function (PF) scores from frequently used patient-reported outcome measures (PROMs) in cancer patients to facilitate data pooling and comparisons. Study design and setting: Adult cancer patients from five European countries completed the European Organization for Research and Treatment of Cancer (EORTC) computer adaptive test (CAT) Core, EORTC Quality of Life Questionnaire Version 3.0 (QLQ-C30), Functional Assessment of Cancer Therapy - General (FACT-G), 36-item Short Form Health Survey (SF-36), and the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function 20a short form. The R package "equate" was used to establish conversion tables of PF scores on those measures with a bivariate rank correlation of at least 0.75. Results: In total, 953 patients with cancer (mean age 58.9 years, 54.7% men) participated. Bivariate rank correlations between PF scores from the EORTC CAT Core, EORTC QLQ-C30, SF-36, and PROMIS were all above 0.85, but below 0.69 for the FACT-G. Conversion tables were established for all measures but the FACT-G. These tables indicate which score from one PROM best matches the score from another PROM and provide standard errors of converted scores. Conclusion: Our analysis indicates that linking of PF scores from both EORTC measures (CAT and QLQ-C30) with PROMIS and SF-36 is possible, whereas the physical domain of the FACT-G seems to be different. The established conversion tables may be used for comparing results or pooling data from clinical studies using different PROMs.
MeSH term(s)	Adult ; Male ; Humans ; Middle Aged ; Female ; Quality of Life ; Neoplasms/therapy ; Surveys and Questionnaires ; Europe ; Patient Reported Outcome Measures
Language	English
Publishing date	2023-10-31
Publishing country	United States
Document type	Journal Article
ZDB-ID	639306-8
ISSN	1878-5921 ; 0895-4356
ISSN (online)	1878-5921
ISSN	0895-4356
DOI	10.1016/j.jclinepi.2023.10.019
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Article: "The Monkey on Your Shoulder": A Qualitative Study of Lymphoedema Patients' Attitudes to and Experiences of Acupuncture and Moxibustion.

de Valois, Beverley / Asprey, Anthea / Young, Teresa

Evidence-based complementary and alternative medicine : eCAM

2016 Volume 2016, Page(s) 4298420

Abstract: Background. Lymphoedema, a distressing consequence of cancer treatment, has significant negative impact on health-related quality of life. Multidisciplinary approaches are needed to improve physical and psychosocial wellbeing. Acupuncture and moxibustion ...

Abstract	Background. Lymphoedema, a distressing consequence of cancer treatment, has significant negative impact on health-related quality of life. Multidisciplinary approaches are needed to improve physical and psychosocial wellbeing. Acupuncture and moxibustion (acu/moxa), two modalities of traditional East Asian medicine, may contribute to improved outcomes for cancer survivors with lymphoedema. Aim. To explore how patients with lymphoedema secondary to cancer treatment perceive and experience acu/moxa treatment. Design and Setting. A qualitative focus group study, nested in a 3-step mixed methods observational study, was carried out in a cancer drop-in and information centre in north-west London. Methods. Six focus groups and one telephone interview were conducted with 23 survivors of breast or head and neck cancer, who had completed up to 13 acu/moxa treatments. Scripts were transcribed, coded, and analysed to identify salient and overarching themes. Results. Participants described feeling disempowered by cancer treatment and subsequent diagnosis of lymphoedema. Acu/moxa was valued for its whole-person approach and for time spent with a practitioner who cared, listened, and responded. Participants reported changes in physical and psychosocial health, including increased energy levels and reduced pain and discomfort, and feelings of empowerment, personal control, and acceptance. Many were motivated to improve self-care. Conclusion. Many participants who received acu/moxa treatment reported improved wellbeing and a more proactive attitude towards self-care.
Language	English
Publishing date	2016-08-18
Publishing country	United States
Document type	Journal Article
ZDB-ID	2171158-6
ISSN	1741-4288 ; 1741-427X
ISSN (online)	1741-4288
ISSN	1741-427X
DOI	10.1155/2016/4298420
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Book: Guidelines for assessing quality of life in EORTC clinical trials

Young, Teresa

1999

Institution	European Organization for Research on Treatment of Cancer. EORTC Study Group on Quality of Life. EORTC Quality of Life Unit
Author's details	the EORTC Quality of Life Study Group & EORTC Quality of Life Unit ; prepared by Teresa Young ... [et al.]
MeSH term(s)	Neoplasms/drug therapy ; Clinical Trials as Topic ; Data Collection/standards ; Quality of Life
Language	English
Size	41 p. :, ill. +
Publisher	EORTC Quality of Life Study Group
Publishing place	Brussels
Document type	Book
Note	Questionnaire in pocket in back cover.
Accompanying material	1 questionnaire.
ISBN	9782930064178 ; 293006417X
Database	Catalogue of the US National Library of Medicine (NLM)

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