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Pre - Treatment Clinic January 2005 to April 2006 Kate Reid, Zoë Neary, Desmond McGuire University Hospital Birmingham NHSFT UK The Reality . Only seeing patients at Team the extremes of a members continuum – Dysphagia/public aware of speakers – Anxiety/++distress patients but – Extreme weight only being loss-re feeding syndrome. referred the very needy. Preparation and Development July 2004 Described a random 10 patients’ pathway Discussed when we should see them and why we wanted to. Discussed with surgical colleagues. The aim of a service Create a service that has meaning to a patient group Offers useful resources to them at different stages of their treatment programme, recovery and follow up The aim of a service Satisfaction with the information given leads to better quality of life and reduced anxiety/depression (Fallowfield et al 1994 British Medical Journal) Vast majority of patients with cancer want specific information, clinicians tend to under estimate the information needed. (Jenkins et al British Journal of Cancer 2001 Patients want information on the impact of the treatment different options available. Inadequate information is associated with increased anxiety and psychological difficulties. (Edwards British J of Max Facs Surgery 1998) How do we make systems flexible to patient diversity whilst they are making decisions? (Ziegler et al2004 European Journal of cancer care 2004) NICE Guidelines “Careful assessment of each patient’s clinical, nutritional, psychological state is crucial to inform treatment planning. MDT’s should therefore establish multidisciplinary pre-admission clinics at which all aspects of the case can be considered by appropriate specialists, and members of the MDT can discuss the way forward with individual patients and their carers.” ‘Improving Outcomes in Head and Neck Cancer’ Nice 2004 Macmillan Clinical Nurse Specialist Clinical Nurse Specialist – Nutrition Clinical Nurse Specialist – Altered airway In the Clinic January 2005 Dietitian Speech and Language Therapist Head and Neck Counsellor What is the clinic for? • Involvement in decision making Communication Discuss imagination vs. reality Realistic expectations Information check • To build Trust /Familiarity Understand previous experiences Open expression reducing emotional distress • Prioritise and pace information for the patient Coping Strategies Promote Personal Control Pre Treatment Clinic • Full assessment of all factors that will enhance or undermine the patient and family’s ability to cope with the treatment programme and the disease. • High risk screening:- like nutrition & alcohol intake • Requires attention to psychological and rehabilitation issues. • Formation of intervention strategies to identified needs. • Clinical management plan. Bad News Broken • Existing concerns confirmed • New concerns provoked • Distress • Gives advice & reassurance • Give information • Check if person OK Immediate consequences… • Person preoccupied with undisclosed concerns • Fails to take in information • Selectively recalls negative information • “we’ll give you radiotherapy to mop up any residual cells” • Remains distressed Longer term…. • High levels of emotional distress • Development of anxiety disorder and depressive illness - high number of undisclosed concerns - perceived inadequacy of information • Dissatisfaction with care - perceived inadequacy of information Broken Bad News • Existing concerns confirmed • New concerns provoked • Distress • Distress acknowledge • concerns expressed • Information needs established & prioritised • Gives advice & reassurance • Give information • Check if person OK Attendance over 16 months Numbers of patients seen in pre treatment clinic. Total =93 apr mar feb Jan-06 dec nov oct sept aug july june may apr mar feb 14 12 10 8 6 4 2 0 Jan-05 Patient total • Seen on the ward. • Being referred in from another hospital. • Treatment date overtakes pre treatment assessment date. • Patient refuses. (5) Questionnaires Used June 2005 • Quality of Life general EORTC C30 version3 Bjordal K et al Eur J Cancer. 2000 • Quality of Life disease specific EORTC H&N 35 Bjordal K et al Eur J Cancer. 2000 • Optimism scale Life Orientation Test Scheier MFet al Health Psychology 1985; • The Alcohol use disorders identification test 2nd edition Self Assessment Babor TF et al WHO 2001 Hello, my name is England and I’m a drinker Why raise the issue of alcohol “Every unit which provides diagnostic services for Head and Neck cancer should follow documented guidelines on alcohol dependency assessment and management.” (NICE, 2004) ‘Improving Outcomes In Head and Neck Cancers’ November 2004 AUDIT Low Risk Hazardous Harmful Dependant Information Advice Advice Referral Leaflet Brief Intervention Community Services Detox Regime Vitamins AUDIT alcohol score n=24. 30 max value 40 25 20 15 10 5 0 1 3 5 7 9 11 13 15 17 19 patient number Key __ __ advised re alcohol dependency discussion re alcohol intake 21 23 EORTC C30 and HNC35 Frequency when "quite bit" and "very much" were chosen by T1/T2 grp vs.T3/T4 grp 25 frequency 20 15 10 5 0 1 3 5 7 9 11 13 15 patient number Key __T1/T2 __T3/T4 17 19 21 23 25 Health Related QOL and QOL scores T1/T2vs T3/T4 n=25 value (max 100) 120 100 80 60 40 20 0 1 3 5 7 9 11 13 15 17 19 21 23 25 patient Key: __HRQOL T1/T2 __T1/T2 QOL__HRQOL T3/T4 __QOL T3/T4 Interventions subsequent to clinic Pain management Nutritional support Anxiety management Alcohol Smoking Dysphagia intervention Information Medication Supplements Intervention Intervention/withdrawal Advice and Referral Advice and exercises Contact details What we now know • The patient and carers know the teams better, and we are not anonymous • Disease stage should not exclude a patient’s referral • Timing of pre treatment clinic can be varied according to team and patient need. • Assessments are carried out in a systematic way to focus the team on clinical significance. • Patients have to be seen as individuals rather than as a statistic. • Team builds trust and gives support to patient and one another The Future Maintain 90% seen at pre treatment. What are the outcomes from the pre treatment clinic? How does the intervention effect the patient/carers? How does the information that we obtain alter our management of the patient during their treatment? Does it change lifestyle? • “How doctors and nurses communicate can profoundly affect the psychological adjustment and quality of life of cancer patients and relatives” Peter Maguire (1999) Thank You for Listening [email protected]