Objective: Existing patient-reported outcome measures (PROM)s for patients with facial differences lack content validity, as few items address appearance and function issues. The FACE-Q is a new PROM developed to measure outcomes important to patients aged 8-29 years with craniofacial conditions. A process was needed to determine if the FACE-Q content is relevant to patients with head and neck cancer (HNC). Methods: Cognitive interviews with patients with HNC aged 8 to 29 years (n=15) were conducted and feedback from experts in pediatric oncology (n=21) was obtained. Input was sought on all aspects of the FACE-Q content. Results: A total of 1573 codes were developed from patient comments and 234 codes were developed from expert feedback that related to the COSMIN criteria for judging content validity. A total of 12 items were flagged for review from qualitative interviews and 4 comments were coded from expert feedback among the core scales for comprehensibility. Instructions, time frame, and response options were found to be comprehensible and appropriate by almost all patient and expert participants. Participants identified a total of 10 missing items identified across the core scales, while no additional items were identified by experts for the core scales. However, 4 experts identified swallowing/dysphagia as an important item missing from the mouth function scale. Discussion: Content validity of the FACE-Q for patients with HNC was evaluated through cognitive interviews with patients and feedback from pediatric oncology experts. The core scales were answered by all participants and demonstrate overall content validity from feedback offered by both patients and experts. Conclusion: The FACE-Q showed evidence of content validity for its core scales along with limited evidence that the remaining scales covered issues relevant to specific HNC patients. Assessment of the psychometric properties of the new measure is forthcoming as part of an international FACE-Q field-test study. / Thesis / Master of Science (MSc) / The FACE-Q is a patient-reported outcome measure developed to assess outcomes important to patients aged 8-29 years with craniofacial conditions. The current study aimed to determine its content validity for use in patients with head and neck cancer (HNC). Cognitive interviews with patients with HNC aged 8-29 years (n=15) were conducted and feedback from experts in pediatric oncology (n=21) was obtained. A total of 1573 codes from patient comments and 234 codes from expert feedback were developed. A total of 12 items were flagged for review from qualitative interviews along with 4 items from expert feedback among the core scales for comprehensibility. Instructions and response options were found to be comprehensible and appropriate. A total of 10 missing items were identified across the core scales by patient participants while experts identified 1 missing item. The FACE-Q evidenced content validity for core scales along with limited evidence for remaining scales.

Yes / Epidemiological studies have shown that head and neck cancer (HNC) is a complex multistage process that in part involves exposure to a combination of carcinogens and the capacity of certain drug-metabolising enzymes including cytochrome P450 (CYP) to detoxify or activate such carcinogens. In this study, CYP1A1, CYP1B1 and CYP2W1 expression in HNC was correlated with potential as target for duocarmycin prodrug activation and selective therapy. In the HNC cell lines, elevated expression was shown at the gene level for CYP1A1 and CYP1B1 whereas CYP2W1 was hardly detected. However, CYP2W1 was expressed in FaDu and Detroit-562 xenografts and in a cohort of human HNC samples. Functional activity was measured in Fadu and Detroit-562 cells using P450-Glo™ assay. Antiproliferative results of duocarmycin prodrugs ICT2700 and ICT2706 revealed FaDu and Detroit-562 as the most sensitive HNC cell lines. Administration of ICT2700 in vivo using a single dose of ICT2700 (150 mg/kg) showed preferential inhibition of small tumour growth (mean size of 60 mm3) in mice bearing FaDu xenografts. Significantly, our findings suggest a potential targeted therapeutic approach to manage HNCs by exploiting intratumoural CYP expression for metabolic activation of duocarmycin-based prodrugs such as ICT2700. / The authors would like to thank Bradford Institute for Health Research for funding a PhD studentship to DP through a competitive scheme and Yorkshire Cancer Research programme Grant (B381PA) for supporting our cytochrome P450-focused drug discovery research.

HNC incidence and mortality is greater in men and is associated with high risk behaviours and social deprivation. HNC is frequently diagnosed at advanced stages requiring multi-modality treatment which can have a significant impact on appearance and function. Gender can influence health behaviours yet research into male experiences of cancer has primarily focussed on prostate cancer and HNC is an area which is under investigated. The aim of this study was to explore how men with HNC experience appearance and functional change in the first 12 months following diagnosis. Grounded theory methodology (GT) was chosen as the overall purpose of GT is the generation of theory from the data which has explanatory power and advances the understanding of social and psychological phenomena. Retrospective semi-structured interviews were performed with 12 men who were 12 to 24 months post-diagnosis. Key components of GT practice used were simultaneous data collection and analysis, constructing analytic categories from the data, constant comparison, memo-writing and theoretical sampling. Three categories emerged from the data which were inter-related: normalising change; “under siege”: getting through treatment; and reclaiming self. The core category was reconciling change; a new normal which reflects the social and psychological processes involved in accommodating and assimilating change in appearance and function for men with HNC. The substantive theory provides insight into how men with HNC prioritise function and actively distance themselves from concerns regarding appearance. Furthermore, it identifies men who are at risk of social anxiety and isolation due to multiple changes or body incompetence. This study builds on theories of masculinity, body image and disfigurement. The substantive theory developed provides health and social care professionals with new knowledge to support clinical practice and improve care provision.

Indiana University-Purdue University Indianapolis (IUPUI)

published_or_final_version / abstract / Molecular Biology / Master / Master of Philosophy

published_or_final_version / abstract / Medicine / Master / Master of Philosophy

published_or_final_version / Clinical Oncology / Doctoral / Doctor of Philosophy

<p>Aim: The overall aim of this thesis was to acquire knowledge about daily life with focus on eating problems during the trajectory of care for patients with head and neck cancer treated with radiotherapy. Method: The data in study I were gained from medical and nursing records of 50 patients. Documented parameters of eating problems, their causes and consequences, and undertaken interventions were collected before treatment, during radiotherapy, and one, six, and twelve months after completion of treatment, using a study-specific audit instrument. Data were analysed with descriptive and inferential non-parametric statistics. In study II eight patients were interviewed during the radiotherapy treatment period with focus on experiences of eating problems. In study III nine patients were interviewed six to twelve weeks after treatment with the focus on experiences of daily life during the trajectory of care having eating problems. In study IV twelve patients were interviewed about their conceptions of the significance of a supportive nursing care clinic during the whole trajectory of care. Data were analysed with interpretative phenomenology (II, III) and phenomenography (IV). Findings: The four studies showed that being a patient in the trajectory of care often meant that life was disturbed and threatened. This was partly due to the eating problems and their consequences, which could occur during the whole trajectory of care (I, III, IV) but was experienced as most intense and severe during radiotherapy (II) and the nearest weeks after completion of radiotherapy (III, IV). The disturbances and threats experienced due to eating problems could affect the whole person as they were physical (I-IV), psychological, social and existential (II, III). The experiences of eating problems due to the tumour and its treatment and the experience of having cancer per se were strongly connected as one phenomenon, which disturbed and threatened the informants’ daily life. The other part that disturbed the patients’ life was the waiting in suspense. A long and trying waiting in uncertainty was experienced due to lack of knowledge and support, practical as well as emotional. This was most pronounced during pauses in radiotherapy (III) and after completion of the treatment when the lack of support from the health care was obvious (I, II, III). The patients were then most often left to their own devices. In order to endure, they needed both inner strength, described as own coping strategies, and strength from outside, described as support from family, friends and health care professionals (II, III). The nurse clinic was found to give a hand to hold during the whole trajectory of care (IV). It could meet these patients’ needs of knowledge, care and support, both concerning practical measures related to the eating problems and other side-effects of the treatment, and concerning their emotional needs. In addition the nurse clinic could support the relatives in their worries and anxiety (IV). Conclusion: This thesis showed the necessity of continuous assessment, treatment and evaluation of patients’ problems, and the patients’ needs of information and support throughout the trajectory of care.</p>

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