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Family History ClinicPatient Satisfaction SurveyBeaumontHospitalPRINTROOM 0420 Clinical Audit Number: CA432 2020

Thank you to all the people who participated in the PatientExperience Survey. Without your valuable participation andsupport the survey would not have been possible. Your feedbackwill help guide service planning and improvement.

Table of logy7Standard7Main Objectives7Criteria7Conclusion 14Recommendations 14Appendix A: Patient Experience Survey 15Appendix B: Family History Protocol 16Appendix C: Quality Improvement Plan 17

AuthorsLead Clinician, Breast Family History Service:Dr Reem SalmanLead Breast Care Nurse Specialist:Susan GeraghtyClinical Data Manager:Eithne DowneyAcknowledgementsConsultant Radiologists:Dr Niamh Hambly & Dr Deirdre DukeConsultant Surgeons:Prof Arnold Hill & Mr Colm PowerBreast Care Nurse:Belinda FoatLecturer:Donata LankaiteSecretaries:Mandy Boylan & Marina O’NeillMDM Coordinator:Emma FitzpatrickData Entry Clerk:Elaine McLoughlinDesign/Print:Colm KavanaghBreast Care Team

IntroductionStandardThe dedicated family history clinic commenced inSeptember 2015. In 2016, an audit was conductedestablishing compliance with the family historyprotocol. While the family history service was beingestablished, patients were presenting to both thefamily history clinic and the symptomatic breastservice. The majority of family history patientsnow present to the family history clinic. In 2017 adatabase commenced on all new patients presentingto the clinic. It was decided that a patient experiencesurvey should be conducted to ascertain the patientsexperience of the service. The information providedwill help identify areas for improvement and trackprogress.The National Patient Experience survey 2017identifies patient experience as a good indicator ofhealthcare quality and performance.Patient experience is also a reliable measure of thesafety and quality of a service.Main Objectives1. To help improve the quality and safety of thehealth care service we provide.2. To measure patient feedback in a systematicway.3 To help identify areas for improvement to ensurean outstanding quality serviceAimTo capture the patient experience, to ascertain wherewe are now and where we want to be, to improve patientcentred care.4 To use the rich source of information obtainedfrom the survey to help improve the service.CriteriaObjectives To obtain a meaningful picture of the patientQuestions were designed to measure the followingaspects of the patient journey.experience through the Beaumont Breast Centre. To help identify potential areas for service Family History Clinic Appointment Breast Imaging Appointment Overall experienceimprovement. To optimise health expenditure through patientguided planning and evaluation. To allow patients to express their needs andexpectations.Patients also commented on other aspects of theservice in the open ended questions.SampleA sample size of 150 patients was selected from the2017 attendances to the family history clinic. Thesample included 50 patients that had a final risk scoreof low or medium, 50 high risk new attendances and50 high risk return attendances. A total of 76 patientsresponded which gave a return rate of 50.6%.MethodologyA patient experience survey was designed aroundeach aspect of the family history service whichincluded clinic and radiology. The draft survey wasagreed at the family history clinic meeting (seeappendix A). The survey included open and closedended questions. In addition rating scales werealso included. Patients were invited to rate variousaspects of the service. Copies of similar surveys werereviewed prior to finalising the questions.

FindingsClinic AppointmentThe information you were given prior tocoming to the clinicThe courtesy and helpfulness of theperson at receptionLength of time waiting to see Doctor/NurseThe reception/waiting area/seating inthe clinic

The level of privacy and dignity whenbeing examined or when discussing yourfamily historyThe time spent addressing your needsduring your appointmentThe explanation of risk category (Low,Medium, High)The quality of the information leaflet youwere given

Do you think all your informationneeds were met?Do the staff examining you introducethemselves?Was a plan put in place for you?Family History Consultation OutcomeHow long were you waiting for yourimaging appointment?How were you informed of yourimaging appointment?10

The privacy and dignity when beingimagedIf you were unable to attend, was iteasy to reschedule your appointment?How were you informed of your imagingresults?Imaging AppointmentThe courtesy and helpfulness of staffOverall experience of family history clinic11

Patient CommentsHaving peace of mind that I ambeen taking care of, been closelymonitored due to family history.Very efficiently run and friendly staff.The friendliness and efficiency of the staff issecond to none. Of any clinics I‘ve attended (ormy mum has attended). It is by far run the best.It explained a lot of what I needed toknow and relieved my mind.The doctor was incredible. They treated mewith great kindness and respect. All of the staffwere very kind.It gave me peace of mind.Staff nurses were excellent at setting mynerves and explaining everything to me. Iappreciated the kindness and their time.I think it is very thorough; staff are excellentand give time if needed. I feel like I am in verysafe hands.I gained valuable knowledge andinformation.Although the waiting time in clinic isvery long it is worth the wait.Was left waiting for imaging over 12 monthsdue to apparent wrong phone number onpart of file. It wasn’t followed up by letterjust left until next clinic appointment whendoctor realised it hadn’t been done. I thenhad to chase it up myself.I wouldn’t change anything about my visit to theclinic. Everyone was very kind and supportive,fantastic staff.Waiting time for appointment could beshorter. Waiting time for doctor could also beshorter.Waiting times can be very long, several hours.This may be due to the fact that one of myappointments had to be rescheduled due toextreme weather conditions.Sending on of results. I had to chasehospital and GP for them.Explain more how a patient can reduce theirrisk level through life style changes if possibleand reassessment of risk on a yearly basis.The Doctor was surprised I was high risk anddid nothing to suggest lifestyle change couldreduce those risks.Prior to 2017, my experience was poor. Alwaysa different new registrar who only asked thesame family history questions. I hope thereis more information being provided to BRCA2people now so that they are better informed.Waiting area is too crowded and hot.Reception staff are not welcoming and whenyou ask how long you might be waiting theygive a rude response. If you’re given a time toattend, you should be seen at this time.Just waiting time in clinic.Waiting time.12

Waiting times are far too long.I have based my answers on the experienceof 2017 as this was the reason I was pickedfor the study unfortunately my answers forexperience in 2018 would not be the same inrelation to imaging and getting results. I hadto phone for results – was told GP would getthem but they were the previous year’s resultsso my GP had to contact to look for them.Waiting time can be very long attimes in the clinic.The waiting room. A patient set up a rotafor appointments and we were told not totell appointment secretary, she gets upset.We then knew who had come in first and itwas then fair. A numbering system for eachwould help.More information leaflets give out i.e. whatto expect pre op and more information onthe risk category.Waiting times-everyone seems to receive thesame appointment time in the clinic about 2.5hrs wait. Communication after MRI, I did notreceive results was alerted when I was called forfollow up ultrasound and mammogram via text.Communication after subsequent lumpectomyI did not receive results of the biopsy carriedout on what was taken away (benign- but wouldhave been good to be informed).My required appointments should be doneafter one year. It’s over 18 months since thelast appointment since the last appointmentand still waiting for date.13

ConclusionThe survey outcomes were discussed at a family history multi-discplinary meeting.Only patients over the age of 30 years will be accepted into the family history clinic unless a proven geneticmutation has been acknowledged.Patients over the age of 70 years will not continue with screening in the family history clinic they willbe discharged back to their GP and if additional imaging is requested the patient will be sent straight to‘routine radiology first’ and results to GP.Recommendations1. Patients are placed in the queue based on their scheduled appointment time and not their arrivaltime to clinic and advised not to come to their appointment more than 10 minutes before theirallocated time.2. Better waiting room facilities.3. High Risk Letters to be amended to include boxes for mammogram/MRI so that patients knowwhat imaging they are having.4. GP always copied on McKesson order for imaging by GP so that patients can receive results oftheir imaging soon after its done to avoid having to wait a long period to their next family historyappointment.5. Letter that accompanies questionnaire to be updated to include expectations for the patient attheir clinic appointment and the family history information they will require to have with them onthe day so that their risk can be appropriately assessed.6. Link all of the written information were possible to the website to avoid patients being inundated/overwhelmed with information enabling them to look at what is relevant to them and in theirown time.14

Appendix A: Patient Experience SurveyFamily History Patient Experience SurveyBeaumont Breast CentreBeaumont HospitalBeaumont Hospital seeks to provide the highest standard of care to all our patients. This questionnaire isabout your journey through the family history clinic.Your feedback will let us know how we are doing and help us to make improvements. The survey isanonymous and taking part in this survey is voluntary.We value your contribution and thank you for taking the time to complete this questionnaire.Completing the questionnaire Read each question Select the answer that best reflects your opinion by placing a tick in the box If you make a mistake simply cross it out and select the one you want Please do not write your name or address as the survey is anonymous Please use a black or blue penWho completes the questionnaire? The person who has attended the Family History Clinic in Beaumont Breast CentreOr A relative or friend who acts as his/her advocate to reflect the view of the patient.Please indicate to a staff member if you have any support needs or if English is not your first language.Q1. Please rate the following for your clinic appointment(A)The information you were given prior to coming to the PoorFairPoorThe courtesy & helpfulness of the person at reception?Excellent(D)AverageThe reception/waiting area/seating in the clinic?Excellent(C)GoodGoodAverageThe waiting time to see a Doctor/Nurse?ExcellentGoodAverage15