Cancer outcomes research—a European challenge: measures of the cancer burden

Kalager, Mette; Adami, Hans‐Olov; Lagergren, Pernilla; Steindorf, Karen; Dickman, Paul W.

doi:10.1002/1878-0261.13012

Cited by 17 publications

(20 citation statements)

References 54 publications

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“…Few objective methods are available, and no gold standards are defined. Some instruments to measure quality of life (reviewed in Part I and summarized in Table 1) are well accepted in the community such as the European Organization for Research and Treatment of Cancer (EORTC) questionnaires and the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaires [2]. Furthermore, what matters during treatment may differ from what is important during follow-up.…”

Section: Measures To Improve Quality Of Lifementioning

confidence: 99%

“…Mortality, the main alternative, is conflated by prognosis, entails lower statistical power (due to fewer events) and requires longer follow‐up (Table 1 ). Interpretation of temporal trends in incidence is, however, often far from straight forward [ 2 ]. Such trends could be profoundly confounded – or created altogether – by changes in diagnostic intensity, introduction of more sensitive diagnostic tools, overdiagnosis attributable to screening interventions, improved cancer registration and shifts in diagnostic criteria.…”

Section: Outcome Research For the Assessment Of Primary Cancer Preven...mentioning

confidence: 99%

“…To overcome the substantial methodologic obstacles in cancer screening assessment, we propose learning screening programmes as the most realistic and valid future approach [ 2 ]. Such programmes allow timely assessment of new screening tools or strategies, for example panels of genetic markers for prostate and breast cancer screening expected to enter national screening programmes soon.…”

Section: Outcome Research For the Assessment Of Cancer Screening Inte...mentioning

confidence: 99%

“…Due to its breadth and complexity, our review has been divided into two parts. In Part I [ 2 ], we reviewed measures used to quantify the burden of cancer and to assess interventions aimed to improve cancer control. We focussed on population‐based measures of cancer burden, which can be estimated and reported for a large number of countries.…”

Section: Introductionmentioning

confidence: 99%

“… Data S1 . The demanding prerequisites for complete, population‐based, high‐quality cancer registration were briefly outlined in Part I [2]. …”

mentioning

confidence: 99%

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Cancer outcome research – a European challenge Part II: Opportunities and priorities

et al. 2022

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In Part I of our review of cancer outcome research, we analysed pros and cons of various measures relevant to quantifying the burden of cancer. Based on our recommendations in Part I, we now discuss in Part II opportunities and priorities in four areas of outcome research: primary prevention; early detection screening; treatment; and quality‐of‐life assessment. We recommend the establishment of an infrastructure that facilitates high‐quality research in these areas: (a) progress in primary prevention can be assessed most directly by monitoring cancer incidence although the interpretation of temporal trends is notoriously confounded by numerous factors that complicate causal inference. (b) preventive screening, with the aim to prevent advanced disease, appears to work well in in some tumours but not in others. It will require randomized control trials (RCTs) to quantify benefits and harms although conclusive studies are increasingly difficult to undertake. We therefore propose learning screening programmes (randomization at the time of rolling out population‐based programmes) as the most feasible approach. (c) New therapeutic interventions tailored to the individual patient often require assessment in RCTs with rather complex and dynamic structure, making their design and analyses increasingly challenging but also more suited to be executed as academic, PI‐initiated trials. (d) We next discuss assessment of quality‐of‐life aspects. Quality of life is a neglected component in outcome research with an urgent need for development, validation and standardization. We finally recommend four initiatives that would pave the way for a valid and informative assessment of the goals for improved cancer control in Europe as defined by the European Academy of Cancer Sciences.

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Section: Measures To Improve Quality Of Lifementioning

confidence: 99%

Section: Outcome Research For the Assessment Of Primary Cancer Preven...mentioning

confidence: 99%

Section: Outcome Research For the Assessment Of Cancer Screening Inte...mentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“… Data S1 . The demanding prerequisites for complete, population‐based, high‐quality cancer registration were briefly outlined in Part I [2]. …”

mentioning

confidence: 99%

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Cancer outcome research – a European challenge Part II: Opportunities and priorities

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Overall and Cervical Cancer Survival in Patients With and Without Mental Disorders

Herweijer,

Wang,

et al. 2023

JAMA Netw Open

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ImportanceIndividuals with a mental disorder experience substantial health disparity and are less likely to participate in cervical screening and human papillomavirus vaccination. Additionally, this population may benefit less from tertiary cancer prevention.ObjectiveTo compare clinical characteristics and survival patterns between patients with cervical cancer with and without a preexisting diagnosis of a mental disorder at the time of cervical cancer diagnosis.Design, Setting, and ParticipantsThis cohort study obtained data from Swedish population-based (Swedish Cancer Register, Swedish Cause of Death Register, Swedish Total Population Register, Swedish Patient Register, and Swedish Longitudinal Integration Database for Health Insurance and Labor Market Studies) and quality registries (Swedish Quality Register of Gynecologic Cancer and Swedish National Cervical Screening Register) on patients with cervical cancer. Patients who were included in the analysis were identified using the Swedish Cancer Register and were diagnosed with cervical cancer between 1978 and 2018. The Swedish Patient Register was used to identify patients with mental disorders using codes from the International Classification of Diseases, Eighth Revision and Ninth Revision and the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision. Because data on clinical characteristics at the time of cancer diagnosis were available for only for part of the study population, 2 patient groups were created: those with cervical cancer diagnosed from 2002 to 2016 and all patients diagnosed with cervical cancer (1978-2018). Data analyses were carried out between March and September 2022.ExposureClinical diagnoses of a mental disorder, including substance abuse, psychotic disorders, depression, anxiety, stress-related disorders, attention-deficit/hyperactivity disorder, autism, and intellectual disability, prior to cervical cancer.Main Outcomes and MeasuresDeath due to any cause or due to cervical cancer as ascertained from the Swedish Cause of Death Register.ResultsThe sample included 20 177 females (mean [SD] age, 53.4 [17.7] years) diagnosed with cervical cancer from 1978 to 2018. In a subgroup of 6725 females (mean [SD] age, 52.2 [18.0] years) with cervical cancer diagnosed from 2002 to 2016, 893 (13.3%) had a preexisting diagnosis of a mental disorder. Compared with patients with no preexisting mental disorder diagnosis, those with a preexisting mental disorder had a higher risk of death due to any cause (hazard ratio [HR], 1.32; 95% CI, 1.17-1.48) and due to cervical cancer (HR, 1.23; 95% CI, 1.07-1.42). These risks were lower after adjustment for cancer characteristics at the time of cancer diagnosis (death due to any cause: HR, 1.19 [95% CI, 1.06-1.34] and death due to cervical cancer: HR, 1.12 [95% CI, 0.97-1.30]). Risk of death was higher for patients with substance abuse, psychotic disorders, or mental disorders requiring inpatient care. Among patients with cervical cancer diagnosed from 1978 to 2018, the estimated 5-year survival improved continuously during the study period regardless of preexisting diagnosis of a mental disorder status. For example, in 2018, the estimated 5-year overall survival proportion was 0.66 (95% CI, 0.60-0.71) and 0.74 (95% CI, 0.72-0.76) for patients with and without a preexisting diagnosis of a mental disorder, respectively.Conclusions and RelevanceFindings of this cohort study suggest that patients with cervical cancer and a preexisting diagnosis of a mental disorder have worse overall and cervical cancer–specific survival than patients without a preexisting mental disorder diagnosis, which may be partly attributable to cancer and sociodemographic characteristics at diagnosis. Hence, individuals with mental disorders deserve special attention in the tertiary prevention of cervical cancer.

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Engaging European society at the forefront of cancer research and care

et al. 2023

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European cancer research stakeholders met in October 2022 in Heidelberg, Germany, at the 5th Gago conference on European Cancer Policy, to discuss the current cancer research and cancer care policy landscape in Europe. Meeting participants highlighted gaps in the existing European programmes focusing on cancer research, including Europe's Beating Cancer Plan (EBCP), the Mission on Cancer (MoC), Understanding Cancer (UNCAN.eu), and the joint action CRANE, and put forward the next priorities, in the form of the Heidelberg Manifesto for cancer research. This meeting report presents all discussions that shed light on how infrastructures can be effectively shaped for translational, prevention, clinical and outcomes cancer research, with a focus on implementation and sustainability and while engaging patients and the public. In addition, we summarize recommendations on how to introduce frameworks for the digitalization of European cancer research. Finally, we discuss what structures, commitment, and resources are needed to establish a collaborative cancer research environment in Europe to achieve the scale required for innovation.

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Cancer outcomes research—a European challenge: measures of the cancer burden

Abstract: All authors contributed to all phases in the preparation of this manuscript including design of its structure, writing of its contents and several rounds of editing before it was unanimously approved.

Cited by 17 publications

References 54 publications

Cancer outcome research – a European challenge Part II: Opportunities and priorities

Cancer outcome research – a European challenge Part II: Opportunities and priorities

Overall and Cervical Cancer Survival in Patients With and Without Mental Disorders

Engaging European society at the forefront of cancer research and care

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