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Original article
Social circumstances and medical complications in children with intestinal failure Veena Zamvar,1 John W L Puntis,1 Girish Gupte,2 Gill Lazonby,1 Christine Holden,3 Elaine Sexton,3 Christopher Bunford,3 Susan Protheroe,3 Susan V Beath2 1
Department of Paediatric Gastroenterology, Leeds Children’s Hospital, The General Infirmary at Leeds, Leeds, UK 2 Department of Paediatric Hepatology and Small Bowel Transplantation, Birmingham Children’s Hospital, Birmingham, UK 3 Department of Paediatric Gastroenterology, Birmingham Children’s Hospital, Birmingham, UK Correspondence to Dr Sue Beath, The Liver Unit (including Small Bowel Transplantation), Birmingham Children’s Hospital, West Midlands B4 6NH UK; [email protected] Third Revision inc Editors changes—5 December 2013 Received 17 May 2013 Accepted 5 December 2013 Published Online First 6 January 2014
ABSTRACT Although most children discharged on home parenteral nutrition (HPN) will achieve enteral autonomy, some remain parenteral nutrition dependent; those who develop life-threatening complications may undergo small bowel transplantation (SBTx). The aim of this study was to investigate the relationship between social circumstances, compliance and complications. Subjects and methods An observational study in 2008–2012 on 64 children (34 HPN, 30 SBTx) from three units (two regional gastroenterology; one transplant). Social circumstances were assessed routinely as part of discharge planning; adherence by families to home care management was scored, and episodes of catheter-related blood stream infection and graft rejection were recorded for 2 years and related to compliance and social circumstances. Results A quarter of families had a disadvantaged parent: non-English speaking (n=11), unable to read (n=5), physical disability (n=3), mental health problems disclosed (n=10); 20% children were cared for by a lone parent. Discharge home was delayed by social factors (n=9) and need for rehousing (n=17, 27%). 17/34 (50%) of HPN and 12/30 (40%) of transplant families were assessed as fully adherent. 10 families were assessed as non-adherent, eight were subject to child protection review and care was taken over by another family member (n=3) or foster parents (n=2). The risk of catheter-related blood stream infection was increased by parental disadvantage and age 50% of occasions took >7 days to respond to urgent telephone messages) and ‘non-compliant’ (unable to comply with follow-up regimens; referral to a child protection team made—table 2). Adherence to management and follow-up protocols as above was given an arbitrary score that was then used as a proxy measure for compliance with MDT management recommendations. Complications recorded were: (1) Catheter-related blood stream infection (CRBSI), defined as a positive blood culture in association with at least one of the following: fever >38.5 C, rigours or hypotension,10 no alternative identifiable source of infection; (2) Histologically confirmed rejection of small bowel allograft.
Table 1 Demographic details of patients
Median age in months (Q1, Q3) Minimum and maximum years Gender Short bowel syndrome (%)* Dysmotility (%) Enteropathy (%) Transplant details
Median duration of follow-up after SBTx in months (Q1, Q3) Minimum and maximum years
HPN patients n=34
SBTx patients n=30
36 (25.5, 72.5) 0.5–18 years 15 female 19 male 17* (50) 8 9 na
76 (52, 142) 2–18 years 14 female 16 male 18† (60) 10 2 Isolated bowel=6 Combined liver and bowel=24 40 (20, 55.5) 2–11 years
*Of which 3 (8.8%) born with a gastroschisis. †Of which 11 (36%) born with a gastroschisis. HPN, home parenteral nutrition; na, not available; SBTx, small bowel transplantation.
Statistics The relationship between complications, social circumstances and compliance was tested in a 2×2 contingency table using Fisher’s exact test and two-tailed p values using software published by GraphPad Instat (Instat 3 for Macintosh July 2009).
Ethics Ethical approval was not considered necessary as this study was conducted as part of normal clinical audit processes in each unit and pooled data were anonymised.
RESULTS The patients were all drawn from a similar cohort who had been exposed to the hazards of long-term PN; SBTx patients were older having received PN at an earlier point in their lives (SBTx is not carried out unless complications of HPN have occurred) see table 1. Gastroschisis as the underlying cause of intestinal failure was relatively more common in SBTx recipients (36%) compared with HPN patients (8.8%). The social circumstances at the time of the survey in May 2009 are shown in table 3. The prevalence of single parent household and involvement in care giving by extended family was similar for HPN and SBTx patients. Disadvantage in one parent was recorded for a quarter of families and included: non-English speaking n=11; limited education (unable to read) n=5; physical limitation n=3. Mental health problems in a parent had been disclosed to a member of the MDT in 10 families. There were no differences between HPN and SBTx groups for the prevalence of disadvantage and mental health problems, but rehousing was required in a greater proportion of HPN children (41%). Discharge home was delayed by non-medical factors in five patients after training for HPN, and in four SBTx patients, because of concerns about the adequacy of housing (n=8) and difficulty registering with a general practitioner (n=1). The support available to families depended on the local arrangements: one HPN centre employed a home care company (a package with nursing support) and another used key workers in the community. The SBTx families were resident in all parts of the UK including Scotland and Northern Ireland and had variable levels of support with only 8/30 having input from a community paediatric nurse. Respite care was not generally available and was not accessed by any of the children on HPN or after SBTx during the course of this survey. Parental separation occurred in 3 (9%) of HPN families and in 5 (17%) of SBTx families during the 2 years of follow-up. Using the criteria given in table 2, 17/34 (50%) of HPN and 13/30 (40%) of SBTx recipients’ families were fully compliant with management and follow-up protocols, while 36–38% were partially compliant. For 4/34 (12%) HPN patients and for 6/30 (20%) SBTx patients, non-compliance was a major concern to the MDT. Ten children were alerted to social services, of whom eight children were subject to child protection review, resulting in the care of three being taken over by another family member and two going into foster care. CRBSI occurred in 14/34 HPN patients (27 episodes) varying from 1 to 8 episodes in 1 year (1 every 269 days). In SBTx patients, acute rejection developed in 8/30 (table 4). The relationship between CRBSI or allograft rejection and social factors was assessed according to: single parent household; lack of support from extended family; presence of parental disability or disadvantage; mental distress where disclosed; need for rehousing; parental separation after discharge home; adherence with follow-up (table 4). Only parental disadvantage was related to
Zamvar V, et al. Arch Dis Child 2014;99:336–341. doi:10.1136/archdischild-2013-304482
337
Downloaded from http://adc.bmj.com/ on June 21, 2015 - Published by group.bmj.com
Original article Table 2 Compliance Scoring Grid (used to grade compliance) Definition used by multidisciplinary team Fully compliant score=2 Partial compliance score=1
Very poor or no compliance score=0
Attends all clinic appointments or phones up if unable to do so; responds promptly to phone messages; makes proactive contact about prescriptions and delivery of medication Missed 2 or more clinic appointments/year without warning; required 2 or more reminders to have monitoring blood tests carried out, would regularly (ie, more than 50% of occasions) take up to 7 days to respond to urgent telephone messages left by a member of the team; contact telephone numbers often incorrect or changed without notice Rarely answers phone messages; often out when healthcare professional from community calls; frequently skips monitoring blood tests; evasive and sometimes untruthful about medication administration and symptoms; referred for child protection review.
sepsis risk for HPN patients ( p
Original article
Social circumstances and medical complications in children with intestinal failure Veena Zamvar,1 John W L Puntis,1 Girish Gupte,2 Gill Lazonby,1 Christine Holden,3 Elaine Sexton,3 Christopher Bunford,3 Susan Protheroe,3 Susan V Beath2 1
Department of Paediatric Gastroenterology, Leeds Children’s Hospital, The General Infirmary at Leeds, Leeds, UK 2 Department of Paediatric Hepatology and Small Bowel Transplantation, Birmingham Children’s Hospital, Birmingham, UK 3 Department of Paediatric Gastroenterology, Birmingham Children’s Hospital, Birmingham, UK Correspondence to Dr Sue Beath, The Liver Unit (including Small Bowel Transplantation), Birmingham Children’s Hospital, West Midlands B4 6NH UK; [email protected] Third Revision inc Editors changes—5 December 2013 Received 17 May 2013 Accepted 5 December 2013 Published Online First 6 January 2014
ABSTRACT Although most children discharged on home parenteral nutrition (HPN) will achieve enteral autonomy, some remain parenteral nutrition dependent; those who develop life-threatening complications may undergo small bowel transplantation (SBTx). The aim of this study was to investigate the relationship between social circumstances, compliance and complications. Subjects and methods An observational study in 2008–2012 on 64 children (34 HPN, 30 SBTx) from three units (two regional gastroenterology; one transplant). Social circumstances were assessed routinely as part of discharge planning; adherence by families to home care management was scored, and episodes of catheter-related blood stream infection and graft rejection were recorded for 2 years and related to compliance and social circumstances. Results A quarter of families had a disadvantaged parent: non-English speaking (n=11), unable to read (n=5), physical disability (n=3), mental health problems disclosed (n=10); 20% children were cared for by a lone parent. Discharge home was delayed by social factors (n=9) and need for rehousing (n=17, 27%). 17/34 (50%) of HPN and 12/30 (40%) of transplant families were assessed as fully adherent. 10 families were assessed as non-adherent, eight were subject to child protection review and care was taken over by another family member (n=3) or foster parents (n=2). The risk of catheter-related blood stream infection was increased by parental disadvantage and age 50% of occasions took >7 days to respond to urgent telephone messages) and ‘non-compliant’ (unable to comply with follow-up regimens; referral to a child protection team made—table 2). Adherence to management and follow-up protocols as above was given an arbitrary score that was then used as a proxy measure for compliance with MDT management recommendations. Complications recorded were: (1) Catheter-related blood stream infection (CRBSI), defined as a positive blood culture in association with at least one of the following: fever >38.5 C, rigours or hypotension,10 no alternative identifiable source of infection; (2) Histologically confirmed rejection of small bowel allograft.
Table 1 Demographic details of patients
Median age in months (Q1, Q3) Minimum and maximum years Gender Short bowel syndrome (%)* Dysmotility (%) Enteropathy (%) Transplant details
Median duration of follow-up after SBTx in months (Q1, Q3) Minimum and maximum years
HPN patients n=34
SBTx patients n=30
36 (25.5, 72.5) 0.5–18 years 15 female 19 male 17* (50) 8 9 na
76 (52, 142) 2–18 years 14 female 16 male 18† (60) 10 2 Isolated bowel=6 Combined liver and bowel=24 40 (20, 55.5) 2–11 years
*Of which 3 (8.8%) born with a gastroschisis. †Of which 11 (36%) born with a gastroschisis. HPN, home parenteral nutrition; na, not available; SBTx, small bowel transplantation.
Statistics The relationship between complications, social circumstances and compliance was tested in a 2×2 contingency table using Fisher’s exact test and two-tailed p values using software published by GraphPad Instat (Instat 3 for Macintosh July 2009).
Ethics Ethical approval was not considered necessary as this study was conducted as part of normal clinical audit processes in each unit and pooled data were anonymised.
RESULTS The patients were all drawn from a similar cohort who had been exposed to the hazards of long-term PN; SBTx patients were older having received PN at an earlier point in their lives (SBTx is not carried out unless complications of HPN have occurred) see table 1. Gastroschisis as the underlying cause of intestinal failure was relatively more common in SBTx recipients (36%) compared with HPN patients (8.8%). The social circumstances at the time of the survey in May 2009 are shown in table 3. The prevalence of single parent household and involvement in care giving by extended family was similar for HPN and SBTx patients. Disadvantage in one parent was recorded for a quarter of families and included: non-English speaking n=11; limited education (unable to read) n=5; physical limitation n=3. Mental health problems in a parent had been disclosed to a member of the MDT in 10 families. There were no differences between HPN and SBTx groups for the prevalence of disadvantage and mental health problems, but rehousing was required in a greater proportion of HPN children (41%). Discharge home was delayed by non-medical factors in five patients after training for HPN, and in four SBTx patients, because of concerns about the adequacy of housing (n=8) and difficulty registering with a general practitioner (n=1). The support available to families depended on the local arrangements: one HPN centre employed a home care company (a package with nursing support) and another used key workers in the community. The SBTx families were resident in all parts of the UK including Scotland and Northern Ireland and had variable levels of support with only 8/30 having input from a community paediatric nurse. Respite care was not generally available and was not accessed by any of the children on HPN or after SBTx during the course of this survey. Parental separation occurred in 3 (9%) of HPN families and in 5 (17%) of SBTx families during the 2 years of follow-up. Using the criteria given in table 2, 17/34 (50%) of HPN and 13/30 (40%) of SBTx recipients’ families were fully compliant with management and follow-up protocols, while 36–38% were partially compliant. For 4/34 (12%) HPN patients and for 6/30 (20%) SBTx patients, non-compliance was a major concern to the MDT. Ten children were alerted to social services, of whom eight children were subject to child protection review, resulting in the care of three being taken over by another family member and two going into foster care. CRBSI occurred in 14/34 HPN patients (27 episodes) varying from 1 to 8 episodes in 1 year (1 every 269 days). In SBTx patients, acute rejection developed in 8/30 (table 4). The relationship between CRBSI or allograft rejection and social factors was assessed according to: single parent household; lack of support from extended family; presence of parental disability or disadvantage; mental distress where disclosed; need for rehousing; parental separation after discharge home; adherence with follow-up (table 4). Only parental disadvantage was related to
Zamvar V, et al. Arch Dis Child 2014;99:336–341. doi:10.1136/archdischild-2013-304482
337
Downloaded from http://adc.bmj.com/ on June 21, 2015 - Published by group.bmj.com
Original article Table 2 Compliance Scoring Grid (used to grade compliance) Definition used by multidisciplinary team Fully compliant score=2 Partial compliance score=1
Very poor or no compliance score=0
Attends all clinic appointments or phones up if unable to do so; responds promptly to phone messages; makes proactive contact about prescriptions and delivery of medication Missed 2 or more clinic appointments/year without warning; required 2 or more reminders to have monitoring blood tests carried out, would regularly (ie, more than 50% of occasions) take up to 7 days to respond to urgent telephone messages left by a member of the team; contact telephone numbers often incorrect or changed without notice Rarely answers phone messages; often out when healthcare professional from community calls; frequently skips monitoring blood tests; evasive and sometimes untruthful about medication administration and symptoms; referred for child protection review.
sepsis risk for HPN patients ( p
