A literature review of head and neck cancer patients information needs, experiences and views regarding decision-making
Corresponding Author
L. ZIEGLER phd student
University of Bradford, Bradford, UK
Lucy Ziegler, School of Health Studies, University of Bradford, Unity Building, 25 Trinity Road, Bradford BD5 OBB, UK (e-mail: [email protected]).Search for more papers by this authorR. NEWELL
professor of nursing research
University of Bradford, Bradford, UK
Search for more papers by this authorN. STAFFORD
professor of otolaryngology and head and neck surgery, head of school of medicine
University of Hull, Hull, UK
Search for more papers by this authorR. LEWIN
professor of rehabilitation
Department of Health Studies, University of York, York, UK
Search for more papers by this authorCorresponding Author
L. ZIEGLER phd student
University of Bradford, Bradford, UK
Lucy Ziegler, School of Health Studies, University of Bradford, Unity Building, 25 Trinity Road, Bradford BD5 OBB, UK (e-mail: [email protected]).Search for more papers by this authorR. NEWELL
professor of nursing research
University of Bradford, Bradford, UK
Search for more papers by this authorN. STAFFORD
professor of otolaryngology and head and neck surgery, head of school of medicine
University of Hull, Hull, UK
Search for more papers by this authorR. LEWIN
professor of rehabilitation
Department of Health Studies, University of York, York, UK
Search for more papers by this authorAbstract
This study reviews the body of existing research undertaken to explore head and neck cancer patients experiences of treatment for surgery, their information needs and their views regarding decision-making. Patients who suffer head and neck cancers and undergo surgery often report considerable psychological distress and impaired social functioning. To optimize survival, the decision about what treatment option to follow is often made quickly, with little support in terms of counsel or the provision of information. It is suggested that there is inadequate previous work exploring the content and delivery of information required by patients, their experiences and their views regarding decision-making to guide appropriate clinical interventions. By assimilating and critiquing existing work in this review an appropriate focus for further research is likely to be determined. An electronic search of relevant databases was undertaken including Cinahl, Medline, Psychinfo, Assia, the Cochrane Library and British Nursing Index. In addition, a grey literature search was also undertaken by hand. The search strategy was developed using recommendations from the Centre for Reviews and Dissemination ‘Guidance for Those Carrying Out or Commissioning Reviews’ (CRD Report Number 4, 2001). There is significant psychosocial and other functional disturbance amongst survivors of head and neck cancer surgery. Improved information giving may play a part in determining these outcomes.
REFERENCES
- Baker C.A. (1992) Factors associated with rehabilitation in head and neck cancer. Cancer Nursing 15, 395–400.
- Bjordal K. & Kaasa S. (1995) Psychological distress in head-and-neck-cancer patients 7–11 years after curative treatment. British Journal of Cancer 71, 592–597.
- Bjorklund M. & Fridlund B. (1999) Cancer patients’ experiences of nurses’ behaviour and health promotion activities: a critical incident analysis. European Journal of Cancer Care 8, 204–212.
- Campbell B.H., Marbella A., et al. (2000) Quality of life and recurrence concern in survivors of head and neck cancer. Laryngoscope 110, 895–906.
-
Cassileth B.R.,
Lusk E.J. & Tenaglia (1983) Patients perceptions of the cosmetic impact of melanoma resection.
Plastic and Reconstructive Surgery
74, 73–75.
10.1097/00006534-198301000-00016 Google Scholar
- Centre for Reviews and Dissemination (2001) Undertaking Systematic Reviews of Research on Effectiveness. CRD's Guidance for Those Carrying Out or Commissioning Reviews. CRD Report Number 4 ( 2nd edn), March 2001.
- Chua K.S.G., Reddy S.K., et al. (1999) Pain and loss of function in head and neck cancer survivors. Journal of Pain and Symptom Management 18, 193–202.
- Clarke A. & Cooper C. (2001) Psychosocial rehabilitation after disfiguring injury or disease: investigating the training needs of specialist nurses . . . study 1. Journal of Advanced Nursing 34, 18–26.
- Clarke L.K. (2002) Pathways for head and neck surgery: a patient-education tool. Clinical Journal of Oncology Nursing 6, 78–82.
- Craig Y.J. (1996) Patient decision-making: medical ethics and mediation. Journal of Medical Ethics 22, 164–167.
- Demaddalena H. & Zenner H.P. (1991) Anxiety and coping with anxiety – patients with head and neck cancer. HNO 39, 64–69.
- Drew P., Chatwin J., et al. (2001) Conversation analysis: a method for research into interactions between patients and health-care professionals. Health Expectations 4, 58–70.
- Dropkin M.J. (1999) Body image and quality of life after head and neck cancer surgery. Cancer Practice: a Multidisciplinary Journal of Cancer Care 7, 309–313.
- Dropkin M.J. (2001) Anxiety, coping strategies, and coping behaviors in patients undergoing head and neck cancer surgery. Cancer Nursing 24, 143–148.
- Edwards D. (1998) Head and neck cancer services: views of patients, their families and professionals. British Journal of Oral and Maxillofacial Surgery 36, 99–102.
- Fritz D.J. (2001) Life experiences of head and neck cancer survivors: a pilot study. ORL Head and Neck Nursing 19, 9–13.
- Gamba A., Romano M., Grosso T. & Tamburini M. (1992) Psychosocial adjustment of patients surgically treated for head and neck cancer. Surgery and Psychosocial Adjustment May/June, 218–223.
- De Graeff A., De Leeuw J.R.J., et al. (2000) Pretreatment factors predicting quality of life after treatment for head and neck cancer. Head and Neck – Journal for the Sciences and Specialties of the Head and Neck 22, 398–407.
- Gritz E.R., Carmack C.L., et al. (1999) First year after head and neck cancer: quality of life. Journal of Clinical Oncology 17, 352–360.
-
Hammerlid E.,
Wirblad B., et al. (1998) Malnutrition and food intake in relation to quality of life in head and neck cancer patients.
Head and Neck
20, 540–548.
10.1002/(SICI)1097-0347(199809)20:6<540::AID-HED9>3.0.CO;2-J CAS PubMed Web of Science® Google Scholar
- Hammerlid E., Ahlner-Elmqvist M., et al. (1999) A prospective multicentre study in Sweden and Norway of mental distress and psychiatric morbidity in head and neck cancer patients. British Journal of Cancer 80, 766–774.
- Holmes P. (2000) Facing up to disfigurement. Nursing Times 82, 16–17.
- Hughes L.C., Hodgson N.A., et al. (2000) Information needs of elderly postsurgical cancer patients during the transition from hospital to home. Journal of Nursing Scholarship 32, 25–30.
- Hutton J.M. & Williams M. (2001) An investigation of psychological distress in patients who have been treated for head and neck cancer. British Journal of Oral and Maxillofacial Surgery 39, 333–339.
- Kim M.K. & Alvi A. (1999) Breaking the bad news of cancer: the patient's perspective. Laryngoscope 109, 1064–1067.
- De Leeuw J.R., De Graeff A., et al. (2001) Prediction of depression 6 months to 3 years after treatment of head and neck cancer. Head and Neck – Journal for the Sciences and Specialties of the Head and Neck 14, 10–16.
- Mesters I., Van Den Borne B., et al. (2001) Measuring information needs among cancer patients. Patient Education and Counseling 43, 253–262.
- Monga U., Tan G., et al. (1997) Sexuality in head and neck cancer patients. Archives of Physical Medicine and Rehabilitation 78, 298–304.
- National Cancer Alliance (2002) Head and Neck Cancers patients Views and experiences. NCA Report No3. January 2002.
- Newell R. (2000) Psychological difficulties amongst plastic surgery ex-patients following surgery to the face: a survey. British Journal of Plastic Surgery 53, 386–392.
- Rapoport Y., Kreitler S., et al. (1993) Psychosocial problems in head-and-neck cancer-patients and their change with time since diagnosis. Annals of Oncology 4, 69–73.
- Scott G.C. & Lenert L.A. (2000) What is the next step in patient decision support? Journal of the American Medical Informatics Association 68, 784–788.
- Snaith R.P. & Zigmond A.S. (1994) The Hospital Anxiety and Oppression Scale Manual. NFER-Nelson, Windsor, UK.
- Sollner W., DeVries A., et al. (2001) How successful are oncologists in identifying patient distress, perceived social support, and need for psychosocial counselling? British Journal of Cancer 84, 179–185.
- Stafford N.D., Lewin R.J., et al. (2001) Surgeon information giving practices prior to laryngectomy: a national survey. Annals of the Royal College of Surgeons of England 83, 371–375.
- Stiggelbout A.M. & De Haes J. (2001) Patient preference for cancer therapy: an overview of measurement approaches. Journal of Clinical Oncology 19, 220–230.
- Strull W.M., Lo B., et al. (1984) Do patients want to participate in medical decision making? JAMA: the Journal of the American Medical Association 252, 2990–2994.
- Timmermans D.R.M. (1999) What clinicians can offer: assessing and communicating probabilities for individual patient decision making. Hormone Research 51, 58–66.
- Whale Z., Lyne P.A., et al. (2001) Pain experience following radical treatment for head and neck cancer. European Journal of Oncology Nursing 5, 112–120.