The value and disadvantages of telephone contact with lung cancer patients: the perceptions and practice of lung cancer nurse specialists Helen Dutton Macmillan Lung Cancer Nurse UHSM

The problem in practice Telephone patients 4 or more patients a day – unplanned work - unsure of benefit to patient/carer Cause anxiety for me Literature search – telephone follow up studies common but little evidence in lung cancer

Getting research started Helpful to have support to clarify questions What is the current practice of CNSs in lung cancer regarding telephone contact with lung cancer patients? What do CNS’s in lung cancer perceive to be the value of telephone contact with lung cancer patients? What do CNS’s in lung cancer perceive to be the disadvantages of telephone contact with lung cancer patients? Use experts available – nurse consultants, Prof Christi Deaton, Stephanie Tierney Helps identify method – questionnaire

Ethical approval Research and development – sponsor research, provide approval, identification number, checklist Ethics- National research ethics service - long process Once form completed ring helpline to book in, reference number and allocated research committee

Questionnaire sent to all members of the National Lung Cancer Nurses Forum = 247 Response rate = 57% N=141 74% of nurses worked in a district general hospital 18% of nurses worked in a tertiary cancer centre. 1.5% of nurses worked exclusively in the community Most nurses routinely phoned all their patients =81% 73% of the nurses ‘cold call’ patients not known to them For 24% of nurses ‘cold calling’ was either infrequent or never done 11% of nurses made less than 10 calls per week 89% made more than 10 calls per week 24% of nurses made over 40 calls per week 3.2% said they had training in telephone support. 96.8% said that they had not though 12.2% mentioned that they had been trained in communication skills training

The value of telephone contact by the CNS Treatment related reasons Assess and follow up symptom control Provide support Co-ordination of community support We can assess patients and arrange day care admissions e.g. raised calcium, pleural effusions, arranging taps” ‘it forms a major part of patient/carer support and monitoring through their cancer journey’ “It helps develop a relationship between patient and nurse” “it encourages the patient to think they are cared for”. “Checking community requirements are met e.g. Macmillan support”

Difficulties problems for nurses relating to ‘cold calling’ problems for both nurses and patients relating ‘opening a can of worms’ concerns about over reliance on the nurse practical and managerial problems I am particularly bothered about finding myself in a position when I have not met a patient and don’t know their current level’ and another wrote: ‘the most difficult is cold calling’ ‘feeling after a difficult call that you may be leaving the patient at home to cope’ ‘I work alone on annual leave, the messages gives our medical secretaries as point of contact - often I get back to hear a message in the background ‘she’s not there’’ sharing an office means lack of privacy or inappropriate conversations going on in the background’

Things that help Ongoing support Planned time to actually do the writing Keeping the question contained Enthusiasm for subject Stamina

Barriers to research Finding time/other pressures Leaving long periods between each stage Ethics applications- long process confusing at times

Benefits of research In depth knowledge of subject relevant to clinical practice Greater understanding of research process- helps when reading academic papers Very helpful when writing dissertation Clarifies practice – led to changes already Future development- ? guidelines about telephone follow, ? develop training ? establish telephone clinic