The importance of a collaborative health‐related quality of life measurement strategy for adolescents and young adults with cancer

Husson, Olga; Sodergren, Samantha; Darlington, Anne‐Sophie

doi:10.1002/cncr.33416

Cited by 9 publications

(5 citation statements)

References 13 publications

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“…The heterogeneity of AYAs regarding developmental and life stages (adolescence, emerging and young adulthood), the high number of histological subtypes and hence, the broad treatment landscape, different places of care (e.g. paediatric vs. adult vs. AYA units; public vs. private institutions; urban vs. rural; academic vs. non-academic institutions; and availability of an AYA care program at institutions), and diverse healthcare systems as well as social and cultural contexts, make it challenging to develop a single AYA-specific COS that meets the needs of research, clinical practice, policymakers and industry [ 60 ]. We therefore propose a flexible strategy with a universally applicable COS for AYAs that captures AYA-specific outcomes that crosscut a majority of cancers connected with disease-specific COSs (e.g., for breast cancer [ 61 ]) and target domains that are unique to the cancer and its treatment.…”

Section: Discussionmentioning

confidence: 99%

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer

Husson,

Janssen,

Reeve

et al. 2024

BMC Cancer

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Background Adolescents and young adults (AYAs) with cancer, defined as individuals aged 15–39 years at initial cancer diagnosis, form a unique population; they face age-specific issues as they transition to adulthood. This paper presents the protocol for the development of a core outcome set (COS) for AYAs with cancer. Methods The methodological standards from the Core Outcome Measures in Effectiveness Trials (COMET) and the International Consortium for Health Outcomes Measurement (ICHOM) for COS development will guide the development of the COS for AYAs with cancer. The project will consist of the following phases: (1) define the scope of the COS; (2) establish the need for a COS in this field (3) assemble an international, multi-stakeholder working group; (4) develop a detailed protocol; (5) determine “what to measure” (i.e., outcomes); (6) determine “how to measure” (i.e., measures); and (7) determine “case-mix” variables. Conclusions The development of a COS for AYAs with cancer will facilitate the implementation of efficient and relevant standards for data collection, both for clinical trials and in routine healthcare, thereby increasing the usefulness of these data to improve the value of the care given to these underserved young cancer patients.

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Section: Discussionmentioning

confidence: 99%

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer

Husson,

Janssen,

Reeve

et al. 2024

BMC Cancer

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“…Interestingly, in our study, a significant difference was only seen on the physical functioning scale of the EORTC QLQ-C30, with older patients scoring worse. This shows that by only using a generic questionnaire, the impact of DTF on younger patients could be missed, emphasising the importance of AYA-specific and disease-specific questionnaires [ 39 ]. It is noteworthy that, in general, socio-demographic factors had the greatest impact on generic HRQoL, whereas the influence of clinical factors was mainly seen on the DTF-QoL, indicating that the DTF-QoL provides relevant additional information about the HRQoL of these specific subgroups.…”

Section: Discussionmentioning

confidence: 99%

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes

Schut

Lidington

Timbergen

et al. 2022

Cancers

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Desmoid-type fibromatosis (DTF) is a rare, soft-tissue tumour. These tumours do not metastasize, but their local aggressive tumour growth and unpredictable behaviour can have a significant impact on health-related quality of life (HRQoL). Little is known about which DTF patients are particularly affected by an impaired HRQoL. The objectives of this study were to assess HRQoL among different groups of DTF patients and to investigate which socio-demographic and clinical characteristics were associated with DTF-specific HRQoL. A cross-sectional study was conducted among DTF patients from the United Kingdom and the Netherlands. HRQoL was assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), accompanied by the DTF-QoL to assess DTF-specific HRQoL. The scores were compared amongst subgroups, based on the socio-demographic and clinical characteristics of DTF patients. Multiple linear regression analyses with a backward elimination were conducted to identify the factors associated with DTF-specific HRQoL. A total of 235 DTF patients completed the questionnaires. Female patients, patients with more than two comorbidities, or patients who received treatment other than only active surveillance (AS) or surgery scored significantly worse on the subscales of both the EORTC QLQ-C30 and DTF-QoL. Patients that were ≥ 40 years scored significantly worse on the physical functioning scale of the EORTC QLQ-C30, while younger patients (18–39 years) scored significantly worse on several DTF-QoL subscales. Differences in the DTF-QoL subscales were found for tumour location, time since diagnosis and the presence of recurrent disease. Furthermore, treatments other than AS or surgery only, female sex, younger age and the presence of comorbidities were most frequently associated with worse scores on the DTF-QoL subscales. This study showed that (DTF-specific) HRQoL differs between groups of DTF patients. Awareness of these HRQoL differences could help to provide better, personalised care that is tailored to the needs of a specific subgroup.

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“…We might have missed some AYA-specific and/or disease-specific HRQoL issues. There is an ongoing debate in the literature on the optimal HRQoL measurement strategy for AYAs given their heterogeneity in terms of cancer types and developmental stages [ 41 , 42 ]. A core item set combined with the advantages of a flexible measurement system will support future collaborative and comparative research efforts to improve AYA health outcomes.…”

Section: Discussionmentioning

confidence: 99%

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals

Kaal

Lidington

Prins

et al. 2021

JCM

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This study aimed to identify health-related quality of life (HRQoL) issues of relevance for adolescent and young adult (AYA) cancer patients, the perception of relevant HRQoL issues for AYA in generalby the health care professionals (HCP), and discrepancies between issues identified by AYAs and HCP. Dutch AYAs aged 18–35 years at the time of cancer diagnosis (N = 83) and HCPs (N = 34) involved in AYA oncology were invited to complete the Quality of Life for Cancer Survivors questionnaire. HCPs rated physical symptoms such as fatigue, appetite, pain, constipation, sleep disorders, nausea and neuropathy among AYA cancer patients significantly higher (i.e., more problems) than AYA cancer patients. AYA cancer patients rated overall physical health and quality of life, happiness, satisfaction, usefulness and support from others, all positively formulated questions, significantly higher (i.e., more positive) than HCPs. The most highly rated issues (negative and positive combined) for AYAs were: perceived support from others, distress about initial cancer diagnosis, distress for family and overall quality of life. HCPs identified distress about diagnosis, treatment, family and interference of illness with employment/study as the most problematic issues (all negative) for AYAs. Five of the ten most common issues listed by patients and HCPs were the same. Male AYAs, patients treated with curative intent and those with a partner rated positive HRQoL issues higher than their counterparts. The discrepancy between the perception of patients and HCPs illustrates the importance of patient involvement in organizing physical and psychosocial care.

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The importance of a collaborative health‐related quality of life measurement strategy for adolescents and young adults with cancer

Cited by 9 publications

References 13 publications

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer

Protocol for the development of a Core Outcome Set (COS) for Adolescents and Young Adults (AYAs) with cancer

Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes

Health-Related Quality of Life Issues in Adolescents and Young Adults with Cancer: Discrepancies with the Perceptions of Health Care Professionals

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