Home telemetry for children with pacemakers and ICDs Benefits and limitations. Janet McComb Freeman Hospital Newcastle upon Tyne

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Home telemetry for children with pacemakers and ICDs Benefits and limitations Janet McComb Freeman Hospital Newcastle upon Tyne

Heart 2010;96:1502e1508. doi:10.1136/hrt.2009.173328

Epstein et al. ACC/AHA/HRS Guidelines for Device-Based Therapy: Executive Summary JACC Vol. 51, No. 21, 2008:2085 105

Epstein et al. ACC/AHA/HRS Guidelines for Device-Based Therapy: Executive Summary JACC Vol. 51, No. 21, 2008:2085 105

Number of patients Reasons for ICD implantation in children and those with Congenital Heart disease 100 90 80 70 60 50 40 30 20 10 0 CHD Cardiomyopathy Electrial 433 patients in 4 centers, over 12 years median age 16 <1 1-5 6-10 11-15 16-21 >21 Age (years) Multicenter Retrospective ICD Registry Berul et al J Am Coll Cardiol 2008;51:1685-1691

Reasons for ICD implantation in children and those with Congenital Heart disease Electrical 31% LQTS in majority 46% Congenital Heart Disease 19% Tetralogy of Fallot Cardiomyopathy 23% HCM 14% Secondary prevention 48% Primary prevention 52% Multicenter Retrospective ICD Registry Berul et al J Am Coll Cardiol 2008;51:1685-1691

Problems with ICD implantation in children and those with Congenital Heart disease Inappropriate Shocks Occurred in 21%, mean number of shocks 4 Attributed to lead failure in 14% Sinus or atrial tachycardias in 9% And/or oversensing in 4% Multicenter Retrospective ICD Registry Berul et al J Am Coll Cardiol 2008;51:1685-1691

Problems with ICD implantation in children and those with Congenital Heart disease Complications 64 acute complications in 55 patients during the first 30 days (12.5%) Chronic or late complications in 26% Lead related problems in the majority Electrical storm Inappropriate shocks not related to lead failure Multicenter Retrospective ICD Registry Berul et al J Am Coll Cardiol 2008;51:1685-1691

CLINICAL GUIDANCE BY CONSENSUS FOR THE FOLLOW UP OF IMPLANTABLE CARDIAC DEVICES FOR CARDIAC RHYTHM MANAGEMENT, October 2008 Suggested appointments schedule [ for pacemakers] Yearly for pacemakers implanted for less than 7-10 years depending on the manufacturers recommendation and expected battery longevity. 6 monthly for implants exceeding 7-10 years until ERI is reached. 3-6 monthly for Devices that exceed the manufacturers suggested longevity or show decline in battery life. At Cardiac Physiologists discretion for devices that require closer monitoring e.g. programming/lead issues. No appointments schedule suggested for ICDs http://www.hruk.org.uk/docs/guidelines/hruk%20standards%20for%20implantation%20a nd%20follow-up%20of%20cardiac%20rhythm%20management%20devices%20- %20February%202011%20FINAL.pdf

Frequency of pacemaker/icd follow up in person or by remote monitoring Within 72 hours of implantation 2-12 weeks post implantation Every 3-12 months (pacemaker) Every 3-6 months (ICD) Annually until battery depletion 1-3 months at signs of battery depletion HRS/EHRA Expert Consensus on the Monitoring of Cardiovascular Implantable Electronic Devices (CIEDs): Description of Techniques, Indications, Personnel, Frequency and Ethical Considerations Heart Rhythm, Vol 5, No 6, June 2008

Remote monitoring The patient with a pacemaker or ICD capable of remote monitoring must agree to his data being transmitted to a secure server, in or outside Europe He is then supplied with a transmitter, which should be connected to an analogue phone line Data transmission from the device to the transmitter may either be via a telemetry wand, or by radiofrequency If by radiofrequency, it may either be automatic, or patient initiated

Biotronik Cardiomessenger GSM; mobile SJM Merlin@home Analogue phone line; fixed

Remote monitoring Automatic monitoring using radiofrequency allows transmission of prespecified alerts on a daily basis, related to device parameters, arrhythmias and clinical status, in addition to routine follow up transmissions

Remote monitoring: benefits Reduced hospital visits, saving patient time Relatives time Staff time (but investment needed to save) Transport costs Earlier time to intervention for problems Lead failure Atrial fibrillation Heart failure monitoring Loss of biventricular pacing

Remote monitoring: problems Technical problems Most require analogue phone line in the bedroom Interference with internet/cable TV etc -it interferes with my wife s internet shopping It doesn t match the décor of the bedroom It only works when the implanted device is close to the transmitter most are fixed Some patients just don t want it Extra staff time is required, at least at the beginning

Remote monitoring: potential problems for children with PACEMAKERS Annual follow up is recommended for pacemakers, at least until the battery voltage starts to fall The majority of children with pacemakers have associated structural heart disease, and require clinical follow up so there is no time saving (provided pacemaker clinic follow up can be coordinated with cardiac clinic)

Michrony SR Weight 12.5g Volume 5.9cc Thickness 6mm Accent DR RF Weight Volume Thickness 18g 9.5cc 6mm 44% bigger, 38% heavier

Remote monitoring: potential problems for children with PACEMAKERS & ICDs Usually an analogue phone line in the bedroom is required, with the patient in his bed at night The majority of remote PACEMAKER follow up in the UK is wanded Automatic wireless follow up is preferred

GF dob 28/03/2005 Presented at birth with QT prolongation & 2:1 AV block Twin also has QT prolongation Genotyping negative 2008 treated with nadalol

GF dob 28/03/2005 ECG 27/06/2006 HR 121bpm; QT 348ms; QTc 494ms

GF dob 28/03/2005 atypical Timothy syndrome Abnormality of the CACNA1C gene, encoding for the calcium channel Ca v1.2 QT prolongation (mean 600ms) functional AV block (in utero or neonatal 2:1 AV block) VT or VF in 80% Congenital heart disease in 55% Hypertrophic cardiomyopathy in 30% http://ghr.nlm.nih.gov/condition/timothy-syndrome

GF dob 28/03/2005 atypical Timothy syndrome (Syndactyly) Facial dysmorphisim in 90% Predisposition to sepsis in 50% Metabolic (hypoglycaemia) and immunological disturbance in 50% Neuropsychiatric involvement in 85% http://ghr.nlm.nih.gov/condition/timothy-syndrome

GF dob 28/03/2005 Syncopal attack 02/2010

GF dob 28/03/2005 ECG 2010 HR 77bpm; QT 534ms; QTc 604ms

GF dob 28/03/2005

GF dob 28/03/2005 Syncopal attack 02/2010 Loop recorder implanted

GF dob 28/03/2005

GF dob 28/03/2005

GF dob 28/03/2005

Conclusions Remote monitoring of pacemakers and defibrillators is an attractive new technology; Setting it up takes extra staff time, although less may be required when it is running well

Conclusions Wireless technology offers more flexibity than does wanded transmission GSM technology may be preferable to analogue phone lines, allowing continuous monitoring (with a mobile transmitter) but is probably more expensive

Conclusions The size of the implanted devices may limit use in small children Lack of problems, and need for clinical follow up unrelated to the pacemaker may also reduce its utility in children with pacemakers

Conclusions Children with ICDs may benefit, but require access to their transmitter at regular and predictable times