Assessment of head and neck lymphoedema: The importance of the patient perspective

Background: Head and neck lymphoedema (HNL) is an important contributor to function and quality of life (QoL) following head and neck cancer (HNC) treatment. Despite this, there are limitations to the currently available tools to assess HNL, including a lack of instruments to measure the impact of HNL on a patient’s QoL. Aims: The primary aims of this dissertation are to identify and explore currently available tools for assessment of HNL and to develop a patient reported QoL instrument specific to HNL, grounded in the patient perspective. Methods: A systematic review of tools used in the assessment of HNL was completed and published (Chapter 3). Initial development of an HNL QoL tool included qualitative interviews of patients with HNL. Interviews were transcribed and analysed using inductive thematic analysis (Chapter 6). Data from these qualitative interviews were then used to generate initial items for the QoL instrument. These items were rated for clarity, importance, and intrusiveness by patients with HNL as well as expert clinicians using a Qualtrics survey. Based on these results, the pilot instrument was refined, and proceeded to further validation via three-step cognitive interviews with patients with HNL. The pilot instrument, titled the Comprehensive Assessment of Lymphoedema Impact in the Head and Neck (CALI-HaN) was further refined based on these interviews and prepared for future validation and psychometric efforts (Chapter 7). Results: The results of the systematic review confirmed that there is no available QoL instrument designed specifically for individuals with HNL. Qualitative interviews conducted with 22 individuals with HNL revealed issues around identity, lifestyle, discomfort, and vulnerability. Commonly cited concerns were the basis for item generation, which resulted in 130 initial items, reduced to 73 through a binning and winnowing process. These items were assessed by 9 clinicians and 9 patients with HNL and ranked according to importance and clarity. Based on this feedback, 52 items were preserved. Five participants completed three-step cognitive interviews and based on their feedback; 33 items were retained for the pilot version of the CALI-HaN. Of the items retained, there was 1 global, 10 physical, 7 functional, and 15 emotional items. Conclusions: The focus of this thesis was on exploring the patient experience with HNL to develop a patient reported QoL instrument. We identified physical, functional, and emotional consequences of HNL which were integrated into the development of the CALI-HaN. The extensive focus on the patient perspective during development contributes to strong content validity. Future psychometric testing of the CALI-HaN will follow completion of the PhD

Head and neck lymphedema and quality of life: the patient perspective.

PurposeHead and neck lymphedema (HNL) is common after head and neck cancer (HNC). This study aimed to explore quality of life (QoL) in patients with HNL to guide the development of a patient-reported QoL measure.MethodsWe conducted semi-structured interviews with 22 HNC survivors with HNL. Interviews explored participants' experiences of living with HNL. Analysis of interview transcripts drew on qualitative content analysis to ensure themes were grounded in patient experience.ResultsTwo main themes were established: "I want to live my life" and "It was like things were short-circuited." These themes encompassed the substantial disruption patients attributed to the HNL and their desire to normalize life.ConclusionsUnderstanding the impact of HNL on individual patients may be critical to optimizing treatment strategies to improve the physical burden of HNL and QoL. This study provides the framework for developing a patient-reported HNL QoL measure.Implications for cancer survivorsThe development of an HNL-specific QoL measure, grounded in the patient perspective, may provide cancer care teams with a tool to better understand HNL's impact on each patient to tailor patient-centered care and optimize QoL outcomes

Development and reliability of the Revised Patterson Edema Scale.

ObjectiveThe Patterson Edema scale was developed in 2007 to address the lack of a reliable, sensitive scale to measure laryngeal and pharyngeal oedema in patients with head and neck cancer. The objective of this study was to revise the existing Patterson scale to improve its reliability and utility.DesignProspective investigation.SettingAcademic medical center.ParticipantsSpeech-Language Pathologists, Otolaryngologists, and Radiation Oncologists.Main outcome measuresRatings using the Revised Patterson Edema Scale.MethodsA consensus group reviewed existing literature regarding the performance of the original Patterson scale and revised the existing scale in regard to items to be included and descriptors for each severity level. The scale was then utilised by 18 speech language pathologists from the US and UK with >2 years-experience working with dysphagia and dysphonia with endoscopy. Each SLP rated a total of eight parameters (epiglottis, vallecula, pharyngoepiglottic folds, aryepiglottic folds, arytenoids, false vocal folds, true vocal folds and pyriform sinuses) using the Revised Patterson Edema Scale. Feedback was solicited from raters regarding areas where clarity was lacking for further scale revision. Scale revisions were completed and additional ratings were completed by otolaryngologists, radiation oncologists and less experienced SLP providers to establish reliability across disciplines. Quadratic weighted Kappa values were obtained to establish interrater reliability.ResultsFeedback received from raters included suggestions for clarification of how to rate unilateral oedema, use of a standard task battery to visualise and rate structures consistently, and clarification of true vocal fold oedema rating parameters. Overall interrater reliability was established using quadratic weighted Kappa with good agreement noted for the epiglottis, vallecula, arytenoids and false vocal folds; moderate agreement noted for aryepiglottic folds, pharyngoepiglottic folds and pyriform sinuses; and fair agreement noted for true vocal folds.ConclusionsThe Revised Patterson Edema Scale demonstrates moderate-substantial interrater reliability for most parameters across multiple disciplines and experience levels, with the exception of the true vocal folds where agreement was fair. We believe the Revised Patterson Oedema Scale provides a reliable tool for clinicians and researchers to rate oedema in the supraglottic larynx and pharynx following treatment for head and neck cancer

Timing of postoperative oral feeding after head and neck mucosal free flap reconstruction.

ObjectiveFistula remains a common complication of upper aerodigestive tract reconstruction. Optimal timing of oral feeding is unknown and the impact of early feeding on swallow function and fistula rates remains controversial. The purpose of this study is to better understand the effects of "early feeding" on fistula rate and swallow in patients with free flap reconstruction of upper aerodigestive tract defects.MethodsRetrospective cohort study. One hundred and four patients undergoing free flap reconstruction of mucosalized head and neck defects. Two groups, early feeding (oral intake on or before postoperative day 5) and late-feeding (oral intake after postoperative day 5). Primary outcome was incidence of salivary fistula. Secondary outcomes included Functional Oral Intake Scale scores.ResultsFistula rate was 16.5% in late-feeding group and 0% in early-feeding group (P = .035). Patients who were fed early had an association with progression to a full oral diet by 30 days (P = .027).DiscussionThis cohort analysis suggests that in properly selected patients with free flap reconstruction for mucosal defects, early feeding may not increase risk of salivary fistula and may improve swallow functional outcomes earlier. Level of Evidence: 3

Impact of educational video on critical congenital heart disease screening.

ObjectiveTo assess the status of pulse oximetry screening and barriers to implementing screening programs.MethodsThis was a prospective pre-post intervention survey of nurse managers and medical directors of hospital-based birthing centers in Oregon, Idaho, and Southern Washington. The intervention was a 7-minute video demonstrating and discussing pulse oximetry screening for critical congenital heart disease.ResultsAnalysis of matched pairs showed a significant increase in the use of pulse oximetry screening during the study period from 52% to 73% (P < .0001). Following implementation of the video, the perception of all queried potential barriers decreased significantly among individuals from hospitals self-identified as nonscreening at baseline. Viewing the educational video was associated with an increase in the percentage of individuals from nonscreening hospitals that rated screening as "very beneficial" (45% vs 90%, P = .0001).ConclusionsAn educational video was associated with improved opinions of pulse oximetry screening among hospitals not currently screening

Evaluating Post-Radiotherapy Laryngeal Function with Laryngeal Videostroboscopy in Early Stage Glottic Cancer

ObjectiveDysphonia is common among patients with early stage glottic cancer. Laryngeal videostroboscopy (LVS) has not been routinely used to assess post-radiotherapy (RT) voice changes. We hypothesized that LVS would demonstrate improvement in laryngeal function after definitive RT for early-stage glottic cancer.Study designBlinded retrospective review of perceptual voice and stroboscopic parameters for patients with early glottic cancer and controls.SettingHigh-volume, single-institution academic medical center.Subjects and methodsFifteen patients underwent RT for Tis-T2N0M0 glottic cancer and were evaluated with serial LVS exams pre- and post-RT. Stroboscopic assessment included six parameters: vocal fold (VF) vibration, VF mobility, erythema/edema, supraglottic compression, glottic closure, and secretions. Grade, roughness, breathiness, asthenia, strain (GRBAS) voice perceptual scale was graded in tandem with LVS score. Assessments were grouped by time interval from RT: pre-RT, 0–4, 4–12, and >12 months post-RT.Results60 LVS exams and corresponding GRBAS assessments were reviewed. There were significant improvements in ipsilateral VF motion (P = 0.03) and vibration (P = 0.001) and significant worsening in contralateral VF motion (P < 0.001) and vibration (P = 0.008) at >12 months post-RT. Glottic closure significantly worsened, most prominent >12 months post-RT (P = 0.01). Composite GRBAS scores were significantly improved across all post-RT intervals.ConclusionLVS proved to be a robust tool for assessing pre- and post-RT laryngeal function. We observed post-RT improvement in ipsilateral VF function, a decline in contralateral VF function, and decreased glottic closure. These results demonstrate that LVS can detect meaningful changes in VF and glottic function and support its use for post-RT evaluation of glottic cancer patients

Patient advocacy in head and neck cancer: realities, challenges and the role of the multi-disciplinary team.

This paper explores the concept of advocacy in head and neck cancer. We define inherent challenges in the development and success of advocacy within this context, and offer ways to embed it within clinical practice. We outline what advocacy is, ways in which it may benefit people with head and neck cancer and the engagement required from health care professionals to facilitate advocacy to improve outcomes