Cancer patients have to deal with various physical and psychological side effects of cancer and cancer treatment affecting quality of life (QOL). Specific stressors as fear of death, interruption of life plans, and changes in body image and self-esteem often lead to comorbid anxiety and depression. Head and neck cancer and its treatment has a distinct impact on daily life. In addition to general symptoms such as pain and fatigue, head and neck cancer patients are often confronted with changes in facial appearance, xerostomia, and voice, speech and swallowing dysfunction. QOL reflects the health status of patients by assessing symptoms (impairments) and functioning (disability) and the psychosocial response to possible limitations. In general, tools to assess QOL are questionnaires also called patient reported outcomes. Symptoms or functioning can also be assessed by more objective tools such as imaging techniques, acoustic speech analyses or other tests often applied by allied health services.
The research line Quality of Life Head and Neck Cancer addresses three main topics:
1) Patient reported outcome
3) Allied health services
Yke Aalders, Speech and swallowing therapist
Klaske van den Berg, Speech and swallowing therapist
Prof. dr. R. de Bree, MD, PhD, projectleader
Drs. Marieke de Bruijn, MSc, PhD-student
Drs. Ingrid Cnossen, MSc, PhD-student
Dr. Simone E.J. Eerenstein, MD, PhD
Francine Eskens, Social Worker
Drs. Cees de Goede, Physical therapist
Drs. Christine D.L. van Gogh, MD, PhD-student
Ton Houffelaar, information technician
Prof. dr. C. René Leemans, MD, PhD, projectleader
Drs. Anne-Marie Krebber, MD, PhD-student
Drs. Joop Kuik, MSc, statistician
Drs. Inge M. Oskam, MD, PhD-student
Drs. Rico NPM Rinkel, MD
Dr. Irma M. Verdonck-de Leeuw, PhD, projectleader
Drs. Manon Boddaert, MD, Department of Medical Oncology
Drs. Eric David, MD, Department of Radiology
Prof. dr. Joost Dekker, PhD, Department of Rehabilitation
Drs Jannette Delver, MSc, Department of Pastoral Care
Drs. Patricia Doornaert, MD, Department of Radiation Oncology
Dr. Guus Eeckhout, MD, PhD, Department of Psychiatry
Drs. Corien Eeltink, MSc, Department of Haemato-oncology
Prof. dr. Winald Gerritsen, MD, PhD, Department of Medical Oncology
Prof. dr. Peter Huijgens, MD, PhD, Department of Haemato-oncology
Dr. Mecheline van der Linden, PhD, Depts of Medical Psychology / Medical Oncology
Dr. Annette C. Moll, MD, PhD, Department of Ophthalmology
Drs. Derek Rietveld, MD, Department of Radiation Oncology
Prof. dr. Egbert F. Smit, MD, PhD, Department of Pulmonary Diseases
Prof. dr. Henk Verheul, MD, PhD, Department of Medical Oncology
Dr André Vis, MD, PhD, Department of Urology
Dr. Otto Visser, MD, Department of Haemato-oncology
National and international:
Prof. dr. Pim Cuijpers, PhD, VU University, Department of Clinical Psychology
Dr. Bas Steunenberg, PhD, VU University, Department of Clinical Psychology
Dr. Annemieke van Straten, PhD, VU University, Department of Clinical Psychology
Dr. Florence van Zuuren, PhD, VU University, Department of Clinical Psychology
Prof. Dr. Neil K Aaronson, PhD, Netherlands Cancer Institute, Dept of Epidemiology
Prof dr Filip Smit, PhD, Netherlands Institute of Mental Health and Addiction (Trimbos Institute)
Prof. Dr. Bernard van der Laan, MD, PhD, University Medical Center Groningen, Dept Otolaryngology/Head & Neck Surgery
Prof. Dr. Hans Langendijk, MD, PhD, University Medical Center Groningen, Dept of Radiation Oncology
Prof. Dr. Jan NL Roodenburg, MD, PhD, University Medical Center Groningen, Dept of Oral Surgery
Drs. Kitty Knipscheer, MSc, Ingeborg Douwes Center, Center for Psychosocial Care
Within a framework:
EU COST 2103 Action (Chair: Prof Dr P Dejonckere, University of Utrecht, The Netherlands).
EORTC Quality of Life Group Oral function Module (Chair: Prof dr M. Hjermstad, University of Oslo, Norway).
EORTC Quality of Life Group Head & Neck Cancer Module (Chair: dr S. Singer, University of Leipzig, Germany)
European Voice Handicap Index Working Group (Coordinator: Dr IM Verdonck-de Leeuw).
Patient reported outcome (PRO) refers to questionnaires completed by a patient or interviewer-administered questionnaires. Questionnaires may be generic or condition-specific: developed specifically to assess outcome of patients with a specific condition like (head and neck) cancer. PRO's may address symptoms, functioning, and/or quality of life.
Head and neck cancer and its treatment has a distinct impact on quality of life. In addition to general symptoms such as pain and fatigue, head and neck cancer patients are often confronted with changes in facial appearance, xerostomia, voice, speech and swallowing dysfunction. For example, in a retrospective study on 100 patients after composite resection and microvascular soft tissue transfer, comorbidity proved to be a strong predictor for complications. A prospective study on 80 patients revealed that health related quality of life is often compromised and speech and swallowing problems in daily life are often present. Objective speech analyses and videofluoroscopy of swallowing confirmed these self-reported speech and swallowing problems. A recent study revealed that some aspects of quality of life are predictive of overall and disease specific survival, independently from sociodemographic and clinical predictive parameters.
At our department, questionnaires were developed regarding patient reported voice outcome (Voice Handicap Index (VHI): cut-off score 15 points or higher (97% sensitivity and 86% specificity; difference score 15 points for multiple group study designs)), regarding speech outcome (Speech Handicap Index (SHI): cut-off score 6 points or higher (95% sensitivity and 90% specificity; difference score of 12 points)), and regarding swallowing outcome (SWAL-QOL: cut-off score 14 points or higher (94% sensitivity and 84% specificity; difference score 12 points)). In an European multicenter study, the VHI proved to be reliable and equivalent in various languages.
Systematic routine screening of patient reported outcome might be beneficial. A touch screen computer system (OncoQuest) was developed including the quality of life questionnaires EORTC-QLQ-C30 and HN35 and the HADS and appeared to be feasible for clinical and scientific documentation. OncoQuest is extended with adaptive testing regarding speech (SHI) and swallowing outcome (SWAL-QOL) and the system is introduced to other patient groups (lung, breast, prostate, haemato-oncology).
Currently, research is focussing on the prognostic value of patients' reported quality of life for overall survival in relation to a broad perspective of possible confounders such as sociodemography, comorbidity (such as depression and anxiety), coping style, lifestyle, and tumour and treatment related aspects. Furthermore, research is focussing on the need for and possibilities of allied health services and e-health in relation to patient reported outcome in head and neck cancer patients.
Patients with head and neck cancer often have to deal with side-effects of initial treatment (surgery, radiotherapy, chemoradiation, or a combination), and the considerable threat to self-image, confidence, and identity may be difficult to cope with and can be a cause of psychosocial problems. A cross-sectional study in 41 patient-spouse pairs revealed a high level of distress in 27% of the patients and 20% of the spouses. A touch screen computer system (OncoQuest) including the EORTC-QLQ C30 and HN35 and the HADS was developed and appeared to be feasible for clinical and scientific documentation. A prospective study using OncoQuest revealed that a low level of distress at baseline or follow-up was noted in 64% of the patients; 18% had normal scores at baseline and developed distress at follow-up; 11% had high levels at baseline and returned to normal scores at follow-up, and 7% had persistent distress from baseline to follow-up.
Current research is focussing on efficacy of psychosocial care. In an inventory study on e-health, it appeared that almost 70% of all patients used the Internet, mainly for information seeking and communication purposes. A pilot study in cooperation with the Ingeborg Douwes Center (the Center for Psychosocial Care in Amsterdam) revealed that group intervention may be beneficial in both patients and spouses. A randomised trial has started investigating cost-effectiveness of intervention via the internet and of a stepped care strategy to improve symptoms of depression or anxiety in cancer patients. This stepped care strategy includes 4 steps: 1. Watchful waiting, 2. Internet-based self-help, 3. Problem Solving Therapy applied by a nurse, and 4. Specialised psychological interventions and/or antidepressant medication. Within the scope of a stepped care approach, a tool called OncoMap is under development regarding several self-help programmes targeting insomnia, pain, anxiety, depression, smoking and alcohol abuse. Regarding patients in the palliative phase, a pilot study is ongoing investigating the feasibility of a structured life review protocol on decreasing depressive symptoms and enhancing quality of life.
Voice, speech, swallowing, and shoulder impairment is common in head and neck cancer patients. Medical and technical innovations such as microvascular reconstruction surgery, organ preservation strategies as chemoradiation and radiation delivery techniques aiming at sparing of anatomical speech and swallowing structures, as well as new rehabilitation strategies may lead to improved outcome but evidence is scarce. Development of detailed voice, speech, and swallowing analysis techniques will contribute to improved multidimensional assessment protocols to be used in clinical practice and in prospective trials on efficacy of various treatment modalities and rehabilitation.
For approximately half of the patients after treatment for early glottic cancer, voice quality appeared to be impaired. A randomized prospective study on voice therapy revealed a clear beneficial effect for patients with voice complaints after treatment. Regarding advanced larynx cancer, a robust acoustic voice analysis programme was developed and validated. Prototypes of a sound producing shunt valve tested in a clinical study on 20 laryngectomized patients revealed that low-pitched and noisy vibration of the PE segment, additionally to the sound of the prosthesis, and tracheal phlegm causing malfunction of the vibrating silicone lip were the main problems in the non-successful patients. Regarding oral and oropharyngeal cancer, speech and swallowing impairment after treatment appeared to be highly dependent on tumor size and site. A predictive model was developed for swallowing dysfunction after curative radiotherapy or chemoradiation. Objective acoustic-phonetic speech analysis and neural network feature analyses of hypernasality appeared to contribute to further development of a speech assessment protocol. A study on shoulder function revealed that surgery as well as non-surgical treatment often leads to shoulder impairment. More insight was obtained regarding the feasibility of new rehabilitation approaches such as exercises in an early stage before and during radiotherapy.
Currently, research is focussing on more detailed speech and swallowing outcome measures including oral physiological function, neural network speech feature analyses, swallowing imaging techniques, and on efficacy of strategies aiming at prevention of swallowing, speech, and shoulder impairment such as preventive exercises during treatment and/or emerging IMRT techniques aiming at sparing anatomical structures that are involved in speech and swallowing.