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A Multi-perspective Concept Mapping Study of Head and Neck Cancer Treatment Outcome Priorities

  • Author / Creator
    Alolayan, Waad Riyad
  • Background Head and neck cancer treatments have been showing promising outcomes, yet they often have significant impact on patients. With an approximate 50% survival rate, individuals with a history of this type of cancer are living with long term challenges. With the increasing focus on patient-centred care, patients and caregivers are expected to be part of treatment planning and decision making. This study sought to understand what outcomes are considered by patients, caregivers, and healthcare providers during their experience with head and neck cancer, and which of these have higher priority. We also aimed to study the influence that demographic and clinical characteristics of patients’ might have on their priorities. Methods Using purposeful and snowball sampling, patients with a history of head and neck cancer, caregivers, and healthcare providers were recruited. A mixed-method approach called Group Concept Mapping was used to collect data in two phases. In phase one (brainstorming activity), participants responded to a single focus prompt about important outcomes throughout the entire experience of head and neck cancer treatment. In phase two (sorting and rating activities), participants sorted the statements that were gathered in phase one based on their conceptual similarities. They then rated each statement based on its importance. Concept Systems Global Max™ software (www.conceptsystems.com) was used to gather data, analyze, and create visual maps based on the participants’ input. All qualitative data were converted to quantitative data and went under statistical analysis to produce illustrating maps and visuals of sorting and rating. Results Two-hundred fifty statements were generated from the brainstorming activity. A synthesis process was completed to reduce literal and conceptual redundancies, resulting in a final list of 94 statements that were included in the second phase of the study. One sorting and two rating responses from caregivers were removed as the sample size would not be representative of this subgroup and too small for comparative purposes. A two-dimensional map with a stress value of 0.2213 was generated from multidimensional scaling analysis, suggesting a good overall fit between sort data and the map produced. Eight clusters were created to encompass all statements, namely: ‘Monetary Support’, ‘Person-Centred Care’, ‘Nutrition’, ‘Education’, ‘Psychosocial Concerns’, ‘Continuing Care’, ‘Treatment Side Effects’, and ‘Lifelong Challenges’. At a cluster level, ‘Education’ was the highest priority for patients and healthcare providers. A comparison of priority rating at statement level revealed that the highest priorities for patients and healthcare providers are prompt diagnosis and treatment, followed by ‘knowledgeable and experienced healthcare providers in head and neck cancer’, ‘survival’, and ‘clear detailed upfront information of the case and treatment plan’. Misalignment of priorities were noted in outcomes related to ‘Treatment Side Effects’ and ‘Psychosocial Concerns’. Findings shed light on how patients with history of human papillomavirus (HPV) have a higher priority for psychological concerns including anxiety, depression, fear of the unknown, and fear of recurrence than people without HPV Conclusion In this concept mapping study, two themes have emerged as considerations from the head and neck cancer experience: treatment-related outcomes (physical, functional, psychosocial, and financial) and healthcare related considerations (care pathway, care delivery, and education). Our findings confirm that survival is of high priority for patients and healthcare providers. Our findings further support the complexity of the treatment planning process, evident by the complex maps and highly interconnected statements related to outcomes. Implications for enhancing future treatment planning, improving the quality of care delivered and care experience for head and cancer patients and healthcare providers are discussed.

  • Subjects / Keywords
  • Graduation date
    Fall 2020
  • Type of Item
    Thesis
  • Degree
    Master of Science
  • DOI
    https://doi.org/10.7939/r3-m9wv-4011
  • License
    Permission is hereby granted to the University of Alberta Libraries to reproduce single copies of this thesis and to lend or sell such copies for private, scholarly or scientific research purposes only. Where the thesis is converted to, or otherwise made available in digital form, the University of Alberta will advise potential users of the thesis of these terms. The author reserves all other publication and other rights in association with the copyright in the thesis and, except as herein before provided, neither the thesis nor any substantial portion thereof may be printed or otherwise reproduced in any material form whatsoever without the author's prior written permission.