New approach to interstage care for palliated high-risk patients with congenital heart disease

Abstract

Initiation of a high-risk program might decrease interstage mortality after high-risk neonatal palliative operations. Such an approach might contribute to earlier detection of significant residual/recurrent lesions amenable to therapy.

Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study

“…One study noted that HMP enabled the timely detection of residual lesions, which could then be treated. 52 The study reporting interstage emergency admissions in patients from the control groups (notably the study on hybrid patients) stated that the number of readmissions was similar in the HMP and control groups; 56 however, comparisons between the HMP and the control groups are difficult in this regard because control participants did not have breach criteria.…”

“…The terminology used to describe diagnoses and operative procedures differed slightly between studies: this information is summarised in Table 4, which indicates that four of the research groups studied infants with diagnoses of predominantly HLHS and other related lesions that went down the pathway of a Norwood type stage 1 operation with either MBTS or RVPA 15,[53][54][55]58 or a hybrid procedure 56 (the hybrid approach is a more recently developed treatment pathway applicable to HLHS and related conditions, which incorporates a series of palliative procedures involving both surgery and interventional cardiology or catheterisation), and two of the research groups studied both infants with HLHS type diagnoses who underwent a Norwood type stage 1 operation and infants with other SV diagnoses who underwent an appropriate operation based on diagnosis including isolated MBTS, Damus-Kaye-Stansel repair and pulmonary artery banding. 52,57 Five of six research groups were from the USA and one was from Germany.…”

“…The way in which this information was given to families was not always specified but may have involved different approaches. One study 52 described a comprehensive written guideline outlining when to contact their cardiologist or high-risk team in addition to a 'medical passport' which included information about their child's anatomy, surgical procedures and expected oxygen saturations. In the same study parental empowerment to initiate contact with HPs is highlighted as a key factor.…”

“…Gastrostomy was explicitly mentioned as being a primary strategy for feeding at home for infants with feeding difficulties by three research groups across four studies, 53,54,57,58 with uptake of gastrostomy as high as 80% in one study. 58 One study 52 incorporated a postdischarge feeding protocol concerning the type of formula and target intake, and another involved a feeding team to oversee this aspect. 57 In contrast to these US-based studies, the German study 55 specified that infants should meet home surveillance criteria, which included the ability to feed without tube supplementation for at least 1 week prior to discharge: 12% of patients remained in hospital interstage because they did not achieve this milestone.…”

“…57 In contrast to these US-based studies, the German study 55 specified that infants should meet home surveillance criteria, which included the ability to feed without tube supplementation for at least 1 week prior to discharge: 12% of patients remained in hospital interstage because they did not achieve this milestone. l The approach to contact post discharge: infants were typically monitored by the specialist paediatric cardiac centre by way of both routine follow-up appointments and weekly telephone calls from either a nurse practitioner 52,56,57 or a cardiologist. 55 In two studies, details of the specialist centre follow-up were not reported, although parents were instructed to telephone the centre if criteria were breached.…”