Title: Living with and beyond head and neck cancer: Psychosocial factors associated with impact of cancer and quality of life
Elisavet Moschopoulou was a PhD student at the Centre for Psychiatry, a World Psychiatric Association Collaborating Centre, Queen Mary, University of London.
Update: As funders of the study, we are delighted to announce that Elisavet successfully submitted and defended her thesis in September 2018 with no further corrections. The research is the first to examine post-traumatic stress in head and neck cancer survivors and their carers.
This PhD study aimed to examine and enhance the understanding of quality of life (QoL) in patients living with and beyond head and neck cancer (HNC). The ever-increasing numbers of people diagnosed with HNC together with the rise of the five-year survival rates to around 50% suggest that there is a pressing need for research into the long-term effects of this disease.
The burden of HNC is considerable as the physical consequences of treatment can include permanent and devastating difficulties in basic everyday functions such as eating, speaking and swallowing, as well as facial disfigurement. At the same time, the emotional impact of HNC can be equally devastating and enduring with increased levels of distress and social challenges. As healthcare systems adapt to the changing face of cancer and consider how best to support the growing numbers of people living with and beyond their diagnosis, identifying which factors influence QoL the most becomes increasingly relevant. So far, studies reporting on the impact of HNC have mostly focused on the association of QoL with patients’ medical and demographic characteristics and less attention has been given to the effects of psychological, social and cultural aspects. In addition, most studies have examined QoL in patients within the first couple years since diagnosis and our understanding of the long-term impact of this condition is limited. Finally, the HNC literature abounds with studies examining primarily negative outcomes and less is known about positive changes, their effects and the mechanisms behind them.
The main aim of this study was to examine the QoL and psychological wellbeing of long-term HNC survivors in the UK. This involved measuring symptoms of depression, anxiety and cancer-related post-traumatic stress in this population, as well as examining the associations between QoL, the impact of cancer and patients’ medical, demographic and psychosocial characteristics. This investigation would not have been as thorough without considering the impact of caregivers’ wellbeing. Therefore, psychological distress in caregivers was assessed and the association between caregivers’ and patients’ wellbeing was examined. Finally, perceived positive outcomes in relation to the experience of HNC, as well as the mechanisms behind patients’ ability to perceive benefits in several life domains as a result of adversity were explored using one-to-one in depth interviews.
This was a mixed-methods research project involving a large questionnaire-based study and a smaller qualitative study. Data were collected from 120 HNC patients who had been alive for at least two years since their diagnosis, as well as from 47 caregivers. Patients were recruited from two major London hospitals. Participants completed measures of psychological distress, post-traumatic stress, fatigue, appearance concerns, social support and QoL, as well as the Impact of Cancer scale. Demographic and clinical data were also collected.
This exploratory study offers some insight into the issues that survivors and their caregivers face, into what factors may influence patient QoL, as well as into how patients tend to perceive the impact of HNC many years after treatment. Key findings include:
- For a proportion of HNC patients and their caregivers, psychological distress is not a temporary reaction to the news of the diagnosis or the experience of treatment. Many HNC patients and their partners experience high symptoms of psychological distress and traumatic stress several years after treatment completion.
- Psychological factors such as distress and appearance concerns, along with symptoms of fatigue and subjective perceptions about the impact of HNC are connected with long-term QoL. This is not the case for medical and disease-related characteristics.
- HNC patients whose caregiver suffers from high levels of psychological distress show poorer QoL.
- A proportion of HNC patients experience several positive changes in important aspects of their lives as a result of being diagnosed with and treated for cancer. Factors that are understood to help the development of positive outcomes include: engaging in a process of accepting what cannot be changed, actively taking control, previous life experiences, feeling lucky and being supported in recovery, as well as characteristics of one’s own personality.
The study makes a number of contributions to research in this field. Most notably, it is the first study to assess the prevalence of cancer-related post-traumatic stress in a group of HNC patients and their caregivers many years down the line. It is also the first study to use the “Impact of Cancer” scale measuring both positive and negative aspects associated with cancer survivorship. In addition, this is the first study in the UK to qualitatively examine perceived positive life changes long after HNC diagnosis and treatment. Therefore, the results of this work are of particular relevance to the provision of long-term support and aftercare.
This thesis is a unique contribution to the HNC literature as the findings presented herein begin to paint the portrait of HNC survivors in the UK and to draw attention to those patients who may be most at risk for the development of adverse outcomes. Cancer can be a devastating disease and HNC concerns the most socially important aspect of our bodies, the face. Nevertheless, like all life-altering events it does not result in uniformly negative or uniformly positive changes. When science has come as far as curing HNC and when reconstructive surgery has progressed to the point where disfigured faces can be given a second chance, understanding what life with and beyond HNC is like becomes essential. In a compassionate healthcare system, it is our obligation to learn about the issues patients face and to help them lead a life as healthy and active as possible.
Elisavet has presented at several conferences including the 2016 William Harvey Day and the International Society of Quality of Life Research (ISOQOL) 23rd Annual Conference in Copenhagen, where she was awarded the 2016 Student Poster Presentation Award. She has also gone on to win the 1st Prize for Oral Presentation at the 2017 Barts and the London Psychiatry State of the Art Congress.
Previously I worked as a Research Assistant on a randomised controlled trial funded by Cancer Research UK comparing two surgical treatments for early mouth cancer in terms of survival and quality of life. Prior to this, I completed my Master’s degree in Development and Psychopathology at the University of Reading where I also worked as a Research Assistant in a range of projects studying decision-making mechanisms.
- Response to the letter to the editor: Post-traumatic stress in head and neck cancer survivors and their partners (2019) – Support Cancer Care
- Post-traumatic stress in head and neck cancer survivors and their partners (2018) – Support Cancer Care