Joe Jabbour1, Chris Milross2,3, Puma Sundaresan3,4, Ardalan Ebrahimi5, Heather L Shepherd6,7, Haryana M Dhillon6,7, Gary Morgan8, Bruce Ashford9, Muzib Abdul-Razak8, Eva Wong8, Michael Veness3,4, Carsten E Palme8, Cate Froggatt10, Ruben Cohen5, Rafael Ekmejian11, Jessica Tay12, David Roshan11, Jonathan R Clark1,10,13. 1. Central Clinical School, The University of Sydney, Sydney, New South Wales, Australia. 2. Department of Radiation Oncology and Medical Services, Chris O'Brien Lifehouse, Camperdown, New South Wales, Australia. 3. Department of Medicine, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia. 4. Department of Radiation Oncology, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia. 5. Department of Head and Neck Surgery, Liverpool Hospital, Liverpool, New South Wales, Australia. 6. Centre for Medical Psychology and Evidence-Based Decision-making, The University of Sydney, Camperdown, New South Wales, Australia. 7. Psycho-Oncology Cooperative Research Group (POCOG), School of Psychology, The University of Sydney, Camperdown, New South Wales, Australia. 8. Department of Head and Neck Surgery, Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, New South Wales, Australia. 9. Department of Head and Neck Surgery, Wollongong Hospital, Wollongong, New South Wales, Australia. 10. Sydney Head and Neck Cancer Institute, Chris O'Brien Lifehouse, Camperdown, New South Wales, Australia. 11. Department of Medicine, University of New South Wales, Kensington, New South Wales, Australia. 12. Department of Medicine, University of New England, Armidale, New South Wales, Australia. 13. South West Clinical School, University of New South Wales, New South Wales, Australia.
Abstract
BACKGROUND: Head and neck cancer (HNC) encompasses a diverse group of tumors, and thus providing appropriate and tailored information to patients before, during, and after treatment is a challenge. The objective of the current study was to characterize the experience and unmet needs of patients with HNC with regard to information and support provision. METHODS: A 28-question, cross-sectional survey was completed by patients treated for HNC at 1 of 4 institutions in New South Wales, Australia (Chris O'Brien Lifehouse and Liverpool, Westmead, and Wollongong hospitals). It consisted of the adapted Kessler Psychological Distress Scale and questions assessing information quality, quantity, and format. RESULTS: A total of 597 patients responded. The mean age of the patients was 58 years (range, 21-94 years) with 284 men and 313 women (1:1.1). The majority of patients reported information concerning the disease process (76%), prognosis (67%), and treatment (77%) was sufficient, and approximately 50% reporting having received little or no information regarding coping with stress and anxiety. A substantial percentage of patients reported receiving minimal information concerning psychosexual health (56%) or the availability of patient support groups (56%). The majority of patients preferred access to multiple modes of information delivery (72%), with the preferred modality being one-on-one meetings with a health educator (37%) followed by internet-based written information (19%). CONCLUSIONS: Patients with HNC are a diverse group, with complex educational and support needs. Patients appear to be given information regarding survivorship topics such as psychological well-being, patient support groups, and psychosexual health less frequently than information concerning disease and treatment. Verbal communication needs to be reinforced by accessible, well-constructed, written and multimedia resources appropriate to the patient's educational level. Cancer 2017;123:1949-1957.
BACKGROUND: Head and neck cancer (HNC) encompasses a diverse group of tumors, and thus providing appropriate and tailored information to patients before, during, and after treatment is a challenge. The objective of the current study was to characterize the experience and unmet needs of patients with HNC with regard to information and support provision. METHODS: A 28-question, cross-sectional survey was completed by patients treated for HNC at 1 of 4 institutions in New South Wales, Australia (Chris O'Brien Lifehouse and Liverpool, Westmead, and Wollongong hospitals). It consisted of the adapted Kessler Psychological Distress Scale and questions assessing information quality, quantity, and format. RESULTS: A total of 597 patients responded. The mean age of the patients was 58 years (range, 21-94 years) with 284 men and 313 women (1:1.1). The majority of patients reported information concerning the disease process (76%), prognosis (67%), and treatment (77%) was sufficient, and approximately 50% reporting having received little or no information regarding coping with stress and anxiety. A substantial percentage of patients reported receiving minimal information concerning psychosexual health (56%) or the availability of patient support groups (56%). The majority of patients preferred access to multiple modes of information delivery (72%), with the preferred modality being one-on-one meetings with a health educator (37%) followed by internet-based written information (19%). CONCLUSIONS:Patients with HNC are a diverse group, with complex educational and support needs. Patients appear to be given information regarding survivorship topics such as psychological well-being, patient support groups, and psychosexual health less frequently than information concerning disease and treatment. Verbal communication needs to be reinforced by accessible, well-constructed, written and multimedia resources appropriate to the patient's educational level. Cancer 2017;123:1949-1957.
Authors: Chindhu Shunmuga Sundaram; Haryana M Dhillon; Phyllis N Butow; Puma Sundaresan; Claudia Rutherford Journal: Support Care Cancer Date: 2019-06-15 Impact factor: 3.603
Authors: Bożena Baczewska; Bogusław Block; Mariola Janiszewska; Krzysztof Leśniewski; Agnieszka Zwolak Journal: Int J Environ Res Public Health Date: 2022-08-13 Impact factor: 4.614
Authors: Georgina Wiley; Amanda Piper; A M Phyllis Butow; Penny Schofield; Fiona Douglas; Jane Roy; Linda Nolte; Michael Jefford Journal: Asia Pac J Oncol Nurs Date: 2018 Jan-Mar