Development and validation of a patient reported outcome measure for health-related quality of life for locally recurrent rectal cancer: a multicentre, three-phase, mixed-methods, cohort study

Harji, Deena; Koh, Cherry; McKigney, Niamh; Solomon, Michael J.; Griffiths, Ben; Evans, Martyn; Heriot, Alexander G.; Sagar, P. M.; Velikova, Galina

doi:10.1016/j.eclinm.2023.101945

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2024

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Cited by 4 publications

References 37 publications

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Quality of Life and Survivorship in Extended Pelvic Resection for Advanced and Recurrent Malignancy

Harji,

Taylor

2024

Coloproctology

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Quality of Life and Survivorship in Extended Pelvic Resection for Advanced and Recurrent Malignancy

Harji,

Taylor

2024

Coloproctology

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Registry-based study comparing health-related quality of life between patients with primary rectal cancer and locally recurrent rectal cancer

McKigney,

Downing,

Velikova

et al. 2024

European Journal of Surgical Oncology

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The empty pelvis syndrome: a core data set from the PelvEx collaborative

Mirnezami,

Drami,

Glyn

et al. 2024

British Journal of Surgery

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Background Empty pelvis syndrome (EPS) is a significant source of morbidity following pelvic exenteration (PE), but is undefined. EPS outcome reporting and descriptors of radicality of PE are inconsistent; therefore, the best approaches for prevention are unknown. To facilitate future research into EPS, the aim of this study is to define a measurable core outcome set, core descriptor set and written definition for EPS. Consensus on strategies to mitigate EPS was also explored. Method Three-stage consensus methodology was used: longlisting with systematic review, healthcare professional event, patient engagement, and Delphi-piloting; shortlisting with two rounds of modified Delphi; and a confirmatory stage using a modified nominal group technique. This included a selection of measurement instruments, and iterative generation of a written EPS definition. Results One hundred and three and 119 participants took part in the modified Delphi and consensus meetings, respectively. This encompassed international patient and healthcare professional representation with multidisciplinary input. Seventy statements were longlisted, seven core outcomes (bowel obstruction, enteroperineal fistula, chronic perineal sinus, infected pelvic collection, bowel obstruction, morbidity from reconstruction, re-intervention, and quality of life), and four core descriptors (magnitude of surgery, radiotherapy-induced damage, methods of reconstruction, and changes in volume of pelvic dead space) reached consensus—where applicable, measurement of these outcomes and descriptors was defined. A written definition for EPS was agreed. Conclusions EPS is an area of unmet research and clinical need. This study provides an agreed definition and core data set for EPS to facilitate further research.

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Development and validation of a patient reported outcome measure for health-related quality of life for locally recurrent rectal cancer: a multicentre, three-phase, mixed-methods, cohort study

Cited by 4 publications

References 37 publications

Quality of Life and Survivorship in Extended Pelvic Resection for Advanced and Recurrent Malignancy

Quality of Life and Survivorship in Extended Pelvic Resection for Advanced and Recurrent Malignancy

Registry-based study comparing health-related quality of life between patients with primary rectal cancer and locally recurrent rectal cancer

The empty pelvis syndrome: a core data set from the PelvEx collaborative

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