A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study
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A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study Imogen Ramsey 1
&
Nadia Corsini 1 & Amanda D. Hutchinson 2 & Julie Marker 3 & Marion Eckert 1
Received: 28 January 2020 / Accepted: 31 July 2020 # The Author(s) 2020
Abstract Purpose Core outcome sets aim to improve the consistency and quality of research by providing agreed-upon recommendations regarding what outcomes should be measured as a minimum for a population and setting. This study aimed to identify a core set of patient-reported outcomes (PROs) representing the most important issues impacting on cancer survivors’ long-term health, functioning, and quality of life, to inform population-based research on cancer survivorship. Methods In phase I, a list of 46 outcomes was generated through focus groups (n = 5) with cancer survivors (n = 40) and a review of instruments for assessing quality of life in cancer survivorship. In phase II, 69 national experts in cancer survivorship practice, research, policy, and lived experience participated in a two-round Delphi survey to refine and prioritise the listed outcomes into a core outcome set. A consensus meeting was held with a sub-sample of participants to discuss and finalise the included outcomes. Results Twelve outcome domains were agreed upon for inclusion in the core outcome set: depression, anxiety, pain, fatigue, cognitive problems, fear of cancer recurrence or progression, functioning in everyday activities and roles, financial toxicity, coping with cancer, overall bother from side effects, overall quality of life, and overall health status. Conclusions We established a core set of PROs to standardise assessment of cancer survivorship concerns at a population level. Implications for Cancer Survivors Adoption of the core outcome set will ensure that survivorship outcomes considered important by cancer survivors are assessed as a minimum in future studies. Furthermore, its routine use will optimise the comparability, quality, and usefulness of the data cancer survivors provide in population-based research. Keywords Cancer survivorship . Quality of life . Patient-reported outcomes . Core outcome set . Delphi study . Consensus
Background Rising cancer incidence, advancements in detection and treatment, and improved survival rates have contributed to an unprecedented number of people living with a diagnosis of cancer [1, 2], a group known as cancer survivors [3]. An increasing number of survivors are managing cancer (and its sequelae) as a chronic condition [4] as adverse long-term and late effects related to the disease and treatment can have * Imogen Ramsey [email protected] 1
Rosemary Bryant AO Research Centre, UniSA Clinical & Health Sciences, University of South Australia, City East Campus, GPO Box 2471, Adelaide, South Australia 5001, Australia
2
UniSA Justice & Society, University of South Australia, Adelaide, South Australia, Australia
3
Cancer Voices South Australia, Adelaide, Australia
debilitating and lifelong consequences [5]
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