Development of a Patient-Centered Functional Outcomes Questionnaire in Head and Neck Cancer

Mendez, Adrian; Seikaly, Hadi; Eurich, Dean T.; Dzioba, A; Aalto, Daniel; Osswald, Martin; Harris, Jeffrey R.; O’Connell, Daniel A.; Lazarus, Cathy L.; Urken, Mark L.; Likhterov, Ilya; Chai, Raymond L.; Rauscher, Erika; Buchbinder, Daniel; Okay, Devin; Happonen, Risto‐Pekka; Kinnunen, Ilpo; Irjala, Heikki; Soukka, Tero; Laine, Juhani

doi:10.1001/jamaoto.2019.4788

Cited by 9 publications

(7 citation statements)

References 11 publications

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“…48 These PROMs are often developed from patient populations where the majority have undergone surgery involving the aerodigestive tract. 31 For example, the Edmonton-33 instrument, a commonly used PROM in head and neck cancer patients, was designed and tested only in patients with squamous cell carcinoma of the oral cavity, oropharynx, hypopharynx, and larynx, 49 whereas OncoQuest, a PROM measuring HRQL in head and neck cancer patients, was validated in a patient population where 78% of patients had tumors of the pharynx, larynx, or oral cavity. 50 The PROM developed in this study is the first to specifically address outcomes related to the midface.…”

Section: Discussionmentioning

confidence: 99%

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

Yung,

Luong,

Crouch

et al. 2024

Plastic and Reconstructive Surgery - Global Open

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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.

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Section: Discussionmentioning

confidence: 99%

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

Yung,

Luong,

Crouch

et al. 2024

Plastic and Reconstructive Surgery - Global Open

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Section: Discussionmentioning

confidence: 99%

“…In examining treatment outcomes and priorities, previous studies used measures developed by investigators [ 24 , 25 ]. It is now well-recognized in clinical practice and research that patients’ perspectives are essential from the outset to fully understand their care experience and assess treatment options [ 24 , 25 ]. In our study, we wanted to explore if there are valuable priorities that are missed by investigators and which can only be identified by individuals who experienced HNC treatment.…”

Section: Discussionmentioning

confidence: 99%

Head and neck cancer treatment outcome priorities: A multi-perspective concept mapping study

Alolayan,

Rieger,

Yoon

2023

PLoS ONE

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With the increasing focus on patient-centred care, this study sought to understand priorities considered by patients and healthcare providers from their experience with head and neck cancer treatment, and to compare how patients’ priorities compare to healthcare providers’ priorities. Group concept mapping was used to actively identify priorities from participants (patients and healthcare providers) in two phases. In phase one, participants brainstormed statements reflecting considerations related to their experience with head and neck cancer treatment. In phase two, statements were sorted based on their similarity in theme and rated in terms of their priority. Multidimensional scaling and cluster analysis were performed to produce multidimensional maps to visualize the findings. Two-hundred fifty statements were generated by participants in the brainstorming phase, finalized to 94 statements that were included in phase two. From the sorting activity, a two-dimensional map with stress value of 0.2213 was generated, and eight clusters were created to encompass all statements. Timely care, education, and person-centred care were the highest rated priorities for patients and healthcare providers. Overall, there was a strong correlation between patient and healthcare providers’ ratings (r = 0.80). Our findings support the complexity of the treatment planning process in head and neck cancer, evident by the complex maps and highly interconnected statements related to the experience of treatment. Implications for improving the quality of care delivered and care experience of head and cancer are discussed.

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“…In a recent survey among head and neck surgeons, more than half reported that they do not systematically record functional outcomes, in part because the instruments are too cumbersome and the time required is too long. In contrast to other common otorhinolaryngologic diseases such as chronic rhinosinusitis [ 25 , 26 ], simple, clinically applicable instruments for recording HNC-related basic physical and mental functions are rare [ 8 , 27 ]. The aim of this study was to develop and validate an instrument to assess a basic functional status of HNC patients at oncological follow-up visits.…”

Section: Discussionmentioning

confidence: 99%

A Tool for Rapid Assessment of Functional Outcomes in Patients with Head and Neck Cancer

Dejaco

Riedl

Gasser

et al. 2021

Cancers

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Head and neck cancer (HNC) and its treatment can lead to various functional impairments. We developed and validated an instrument for rapid physician-rated assessment of basic functional outcomes in HNC patients. HNC-relevant functional domains were identified through a literature review and assigned to verbal ratings based on observable criteria. The instrument draft was subjected to systematic expert review to assess its face and content validity. Finally, the empirical validity, reliability, and responsiveness of the expert-adapted Functional Integrity in Head and Neck Cancer (HNC-FIT) scales were assessed in healthy controls and in HNC patients. A matrix of the 6 functional domains of oral food intake, respiration, speech, pain, mood, and neck and shoulder mobility was created, each with 5 verbal rating levels. Face and content validity levels of the HNC-FIT scales were judged to be adequate by 17 experts. In 37 control subjects, 24 patients with HNC before treatment, and in 60 HNC patients after treatment, the HNC-FIT ratings in the 3 groups behaved as expected and functional domains correlated closely with the outcome of corresponding scales of the EORTC-HN35-QoL questionnaire, indicating good construct and criterion validity. Interrater reliability (rICC) was ≥0.9 for all functional domains and retest reliability (rICC) was ≥0.93 for all domains except mood (rICC = 0.71). The treatment effect size (eta-square) as a measure of responsiveness was ≥0.15 (p < 0.01) for fall domains except for breathing and neck and shoulder mobility. The median HNC-FIT scale completion time was 1 min 17 s. The HNC-FIT scale is a rapid tool for physician-rated assessment of functional outcomes in HNC patients with good validity, reliability, and responsiveness.

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Development of a Patient-Centered Functional Outcomes Questionnaire in Head and Neck Cancer

Cited by 9 publications

References 11 publications

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

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

Head and neck cancer treatment outcome priorities: A multi-perspective concept mapping study

A Tool for Rapid Assessment of Functional Outcomes in Patients with Head and Neck Cancer

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