First Phase Development of a Patient-reported Outcome Measure for Midface Oncology

Amanda E Yung; Jason Luong; Gareth Crouch; Angela M Hong; Arjuna Ananda; Simon Taylor; Ilias Kotronakis; Tsu-Hui Hubert Low; Michael S Elliott; Kate McBride; Claudia Rutherford; Jonathan R Clark; Sydney Ch'ng

doi:10.1097/GOX.0000000000005689

First Phase Development of a Patient-reported Outcome Measure for Midface Oncology

Plast Reconstr Surg Glob Open. 2024 Mar 22;12(3):e5689. doi: 10.1097/GOX.0000000000005689. eCollection 2024 Mar.

Authors

Amanda E Yung^{1

2}, Jason Luong^{1

2}, Gareth Crouch^{1

2}, Angela M Hong^{1

3

4}, Arjuna Ananda⁵, Simon Taylor^{6

7}, Ilias Kotronakis⁸, Tsu-Hui Hubert Low^{1

5

9}, Michael S Elliott^{7

8}, Kate McBride², Claudia Rutherford^{10

11}, Jonathan R Clark^{2

7

9}, Sydney Ch'ng^{2

4

7

9}

Affiliations

¹ From the Sydney Medical School, University of Sydney, NSW, Australia.
² Institute of Academic Surgery at Royal Prince Alfred Hospital, Sydney, NSW, Australia.
³ Department of Radiation Oncology, Chris O'Brien Lifehouse Cancer Centre, Sydney, NSW, Australia.
⁴ Melanoma Institute Australia, University of Sydney, NSW, Australia.
⁵ Department of Ear, Nose and Throat Surgery, Royal Prince Alfred Hospital, Sydney, NSW, Australia.
⁶ Department of Oculoplastic Surgery, Sydney Adventist Hospital, Sydney, NSW, Australia.
⁷ Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
⁸ Department of Plastic and Reconstructive Surgery, Royal Prince Alfred Hospital, Sydney, NSW Australia.
⁹ Sydney Head & Neck Cancer Institute, Chris O'Brien Lifehouse Cancer Centre, Sydney, NSW, Australia.
¹⁰ Faculty of Medicine and Health, Sydney Nursing School, Cancer Care Research Unit (CNRU), Sydney, NSW, Australia.
¹¹ The Daffodil Centre, The University of Sydney, a joint venture with Cancer Council NSW, Sydney, NSW, Australia.

Abstract

Background: Facial cancer surgery involving the midface (comprising the lower eyelids, nose, cheeks, and upper lip) can have debilitating life-changing functional, social, and psychological impacts on the patient. Midface symptoms are inadequately captured by existing patient-reported outcome measures (PROMs). PROMs are increasingly used for individual patient care, quality improvement, and standardized reporting of treatment outcomes. This study aimed to present our findings from the first phase of the development of a midface, specifically periocular and nasal, PROM.

Methods: After international guidance for PROM development, the first phase comprised identification of salient issues and item generation. Fifteen patients who had midface surgery and 10 clinicians from various specialties with more than 5 years' experience treating these patients were recruited. Semi-structured interviews explored aesthetic, functional, social, and psychological outcomes, with specific attention to deficiencies in current PROMs. Thematic analysis was used to develop an item pool, and group interviews with clinicians were carried out to create and refine PROM scales.

Results: Qualitative data from patient interviews were grouped into aesthetic, functional, and psychosocial domains for the eyelids and nose. Ninety-nine draft items were generated across these domains. Following focus group discussions, the final version of the midface-specific PROM contained 31 items (13 eye-specific, 10-nose-specific, eight general midface items).

Conclusions: This midface-specific PROM is valuable in assessing and comparing patient-reported outcomes in those who have undergone complex resection and reconstruction of the midface. This PROM is currently undergoing field testing.