We read with interest the recent paper by Doull et al [1] which
explores the optimal model for delivery of paediatric cystic fibrosis (CF)
care. The authors compared three models of paediatric CF care within
their established CF network: full centre care; local clinic based care
with annual review by the CF centre; and hybrid care, where a child is
usually reviewed at least three times a year by the specialist centre.
Three outcomes were considered: nutritional status, pulmonary function and
prevalence of chronic Pseudomonas aeruginosa infection. The only
significant finding was that mean FEV1 was lower amongst children
receiving local clinic based care than full centre care (74.5% predicted
vs 89.2%: p = 0.001) and the authors extrapolate from this that model of
care may affect long term clinical outcomes for children with CF.
The data presented are interesting and highly relevant to all
involved in CF care in South and Mid Wales. However, the study has
several shortcomings which limit generalisation of its findings to other
paediatric CF populations. It is crucial that these are highlighted to
the varied audience of the paper to avoid unnecessary and misguided loss
of confidence in local services elsewhere in the UK.
The number of patients cared for by each local clinic in South and
Mid Wales appears to be small. We are told that the majority of patients
receive local care from ten paediatric units and, later in the paper, that
three of these units deliver hybrid care. The 102 patients receiving
local clinic care must, therefore, be served by 7 centres, equating to an
average caseload of just 15 patients per centre. Ensuring maintenance of
skills for all clinical groups involved with these patients is likely to
be challenging and this may have contributed to the results of the study.
Details about staffing of the South & Mid Wales local clinics are
sparse. Is there a lead consultant paediatrician for CF in each unit? A
cohesive multidisciplinary approach to CF management is vital (as
reflected in the UK CF Trust standards of care [2]) yet Doull's paper
provides very little information about the availability of key team
members in local clinics. The difference in prevalence of nasogastric
feeding between patients attending the specialist centre (7.8%) and the
local clinics (2.9%) is notable and open to various interpretations. How
accessible are physiotherapists? Are they specialist trained? Do they
have capacity to carry out home/school visits? These factors could have a
direct and significant effect on pulmonary function.
No information is provided about the practicalities of pulmonary
function testing. Do the local clinics use the same equipment as the
specialist centre? Are the same calibration procedures in use? If these
variables are not standardised it is inappropriate to make direct
comparisons of pulmonary function data. The standard deviation for %
predicted FEV1 is greatest amongst local clinic patients, indicating a
wider spread of data within this group. Were there any palliative care
patients, for example, in this cohort who may have skewed the data?
Rate of decline in lung function in CF patients is influenced by
socioeconomic status [3]. Unfortunately we are given no information about
levels of social deprivation the population studied and this compounds the
aforementioned problems with interpretation of the data presented.
CF care provision by "local clinics" varies tremendously and it would
be unwise to extrapolate clinical data from one region of the UK and apply
it to another. In January 2011 we launched a new "local clinic" in Wishaw
General Hospital, Lanarkshire, signifying the culmination of years of
strategic planning and preparation in line with the Scottish Government's
National Delivery Plan for Specialist Children's Services. The majority
of our 48 patients have been repatriated from the specialist centre in the
Royal Hospital for Sick Children (RHSC), Yorkhill, Glasgow (20 miles away;
road links good). Social deprivation is prevalent, with north and south
Lanarkshire both being within the five most deprived local authority areas
in Scotland [4]. Our own local multidisciplinary team comprises two
consultant paediatricians with a special interest in respiratory
paediatrics (one of whom is fully subspecialty trained), an associate
specialist with a special interest in respiratory paediatrics, a dedicated
CF specialist nurse, two specialist paediatric respiratory
physiotherapists, a senior paediatric dietitian and a CF pharmacist. We
operate within the West of Scotland managed clinical network (MCN) for
paediatric CF and virtually all care (including pulmonary function
testing, frequency of clinic review, annual review procedures and
transition arrangements) is standardised across the region. We are
currently developing clinical guidelines which will be shared by all four
units in the network. Children attend our fully segregated CF clinics
eight weekly as standard (more frequently in infancy) and are reviewed
annually by the specialist RHSC team at joint clinics held in our
hospital. This said, communication channels are wide open and challenging
patients can be discussed with/reviewed by the specialist team in between
times if clinical need dictates. Ours is the third largest paediatric CF
unit in Scotland. We operate within a robust MCN and we are confident
that we can deliver equitable CF care. Our patients' clinical outcomes
will be monitored closely and we aim to report our experience and data in
years to come.
Finally, it should be borne in mind that local CF care affords many
benefits to children and their families. Strong links with community
organisations such as primary care, social work and education, combined
with shorter travel distances and less disruption to family life, will all
have a positive effect on long term outcomes for children with CF.
References
1. Doull I, Evans H, South and Mid Wales Paediatric Cystic Fibrosis
Network. Full, shared and hybrid paediatric care for cystic fibrosis in
South and Mid Wales. Arch Dis Child 2011 10.1136/adc.2010.199380
2. CF Trust. Standards for the clinical care of children and adults
with cystic fibrosis in the UK. May 2001
3. Taylor-Robinson D, Whitehead M, Diggle P, et al. Socioeconomic
status and rate of decline of lung function in the UK cystic fibrosis
population (abstract). Pediatric Pulmonology 2010;45(S33):449
4. Scottish Index of Multiple Deprivation (SIMD) data 2009.
http://www.scotland.gov.uk/Topics/Statistics/Browse/Social-
Welfare/TrendSIMD Accessed 24th February 2011.
Conflict of Interest:
None declared
We read with interest the recent paper by Doull et al [1] which explores the optimal model for delivery of paediatric cystic fibrosis (CF) care. The authors compared three models of paediatric CF care within their established CF network: full centre care; local clinic based care with annual review by the CF centre; and hybrid care, where a child is usually reviewed at least three times a year by the specialist centre. Three outcomes were considered: nutritional status, pulmonary function and prevalence of chronic Pseudomonas aeruginosa infection. The only significant finding was that mean FEV1 was lower amongst children receiving local clinic based care than full centre care (74.5% predicted vs 89.2%: p = 0.001) and the authors extrapolate from this that model of care may affect long term clinical outcomes for children with CF.
The data presented are interesting and highly relevant to all involved in CF care in South and Mid Wales. However, the study has several shortcomings which limit generalisation of its findings to other paediatric CF populations. It is crucial that these are highlighted to the varied audience of the paper to avoid unnecessary and misguided loss of confidence in local services elsewhere in the UK.
The number of patients cared for by each local clinic in South and Mid Wales appears to be small. We are told that the majority of patients receive local care from ten paediatric units and, later in the paper, that three of these units deliver hybrid care. The 102 patients receiving local clinic care must, therefore, be served by 7 centres, equating to an average caseload of just 15 patients per centre. Ensuring maintenance of skills for all clinical groups involved with these patients is likely to be challenging and this may have contributed to the results of the study.
Details about staffing of the South & Mid Wales local clinics are sparse. Is there a lead consultant paediatrician for CF in each unit? A cohesive multidisciplinary approach to CF management is vital (as reflected in the UK CF Trust standards of care [2]) yet Doull's paper provides very little information about the availability of key team members in local clinics. The difference in prevalence of nasogastric feeding between patients attending the specialist centre (7.8%) and the local clinics (2.9%) is notable and open to various interpretations. How accessible are physiotherapists? Are they specialist trained? Do they have capacity to carry out home/school visits? These factors could have a direct and significant effect on pulmonary function.
No information is provided about the practicalities of pulmonary function testing. Do the local clinics use the same equipment as the specialist centre? Are the same calibration procedures in use? If these variables are not standardised it is inappropriate to make direct comparisons of pulmonary function data. The standard deviation for % predicted FEV1 is greatest amongst local clinic patients, indicating a wider spread of data within this group. Were there any palliative care patients, for example, in this cohort who may have skewed the data?
Rate of decline in lung function in CF patients is influenced by socioeconomic status [3]. Unfortunately we are given no information about levels of social deprivation the population studied and this compounds the aforementioned problems with interpretation of the data presented.
CF care provision by "local clinics" varies tremendously and it would be unwise to extrapolate clinical data from one region of the UK and apply it to another. In January 2011 we launched a new "local clinic" in Wishaw General Hospital, Lanarkshire, signifying the culmination of years of strategic planning and preparation in line with the Scottish Government's National Delivery Plan for Specialist Children's Services. The majority of our 48 patients have been repatriated from the specialist centre in the Royal Hospital for Sick Children (RHSC), Yorkhill, Glasgow (20 miles away; road links good). Social deprivation is prevalent, with north and south Lanarkshire both being within the five most deprived local authority areas in Scotland [4]. Our own local multidisciplinary team comprises two consultant paediatricians with a special interest in respiratory paediatrics (one of whom is fully subspecialty trained), an associate specialist with a special interest in respiratory paediatrics, a dedicated CF specialist nurse, two specialist paediatric respiratory physiotherapists, a senior paediatric dietitian and a CF pharmacist. We operate within the West of Scotland managed clinical network (MCN) for paediatric CF and virtually all care (including pulmonary function testing, frequency of clinic review, annual review procedures and transition arrangements) is standardised across the region. We are currently developing clinical guidelines which will be shared by all four units in the network. Children attend our fully segregated CF clinics eight weekly as standard (more frequently in infancy) and are reviewed annually by the specialist RHSC team at joint clinics held in our hospital. This said, communication channels are wide open and challenging patients can be discussed with/reviewed by the specialist team in between times if clinical need dictates. Ours is the third largest paediatric CF unit in Scotland. We operate within a robust MCN and we are confident that we can deliver equitable CF care. Our patients' clinical outcomes will be monitored closely and we aim to report our experience and data in years to come.
Finally, it should be borne in mind that local CF care affords many benefits to children and their families. Strong links with community organisations such as primary care, social work and education, combined with shorter travel distances and less disruption to family life, will all have a positive effect on long term outcomes for children with CF.
References
1. Doull I, Evans H, South and Mid Wales Paediatric Cystic Fibrosis Network. Full, shared and hybrid paediatric care for cystic fibrosis in South and Mid Wales. Arch Dis Child 2011 10.1136/adc.2010.199380
2. CF Trust. Standards for the clinical care of children and adults with cystic fibrosis in the UK. May 2001
3. Taylor-Robinson D, Whitehead M, Diggle P, et al. Socioeconomic status and rate of decline of lung function in the UK cystic fibrosis population (abstract). Pediatric Pulmonology 2010;45(S33):449
4. Scottish Index of Multiple Deprivation (SIMD) data 2009. http://www.scotland.gov.uk/Topics/Statistics/Browse/Social- Welfare/TrendSIMD Accessed 24th February 2011.
Conflict of Interest:
None declared