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| Journal of the New Zealand Medical Association,
11-May-2012, Vol 125 No 1354
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An evaluation of a pictorial asthma medication plan
for Pacific children
John Kristiansen, Edlyn Hetutu, Moana Manukia, Timothy
Jelleyman
Asthma has a considerable influence on the lives of many New
Zealand children and their families. Uncontrolled disease can negatively impact
day-to-day activities, such as school attendance and participation in sports,
and may lead to acute attacks. These are not only frightening, but can also
result in visits to general practice or accident and emergency
facilities.1
The burden of disease falls disproportionately on children
from Pacific communities. Pacific children, along with Māori, have a higher
asthma prevalence and their acute symptoms are often more severe when compared
with other ethnicities.2 They are also
overrepresented in preventable asthma-related hospital
admissions.3 This is a significant health
inequity and an ongoing challenge for the health sector.
The exact reason for poor asthma outcomes in Pacific
children is unclear. Evidence suggests that Pacific families lack an
understanding about asthma medicines use and how to recognise the signs and
symptoms of worsening asthma.4 These factors
are likely to contribute to poor asthma management and symptom control and may
be mitigated with appropriate education.3
For all ethnicities, asthma education has traditionally
relied upon the use of written asthma action plans, despite there being limited
evidence of their effectiveness.5 Utilisation
rates of such plans may also be decreasing in New
Zealand.6
Data about the use and utility of asthma education resources
in Pacific children is lacking. The only published study that has evaluated
asthma self-management plans in Pacific people was in a Tongan community-based
programme.7 Although older children were
enrolled in this study, the overall emphasis was on adults and no specific
conclusions were made with respect to the child participants.
The Paediatric Society of New Zealand’s childhood
asthma guidelines has recommendations around providing asthma education to
Pacific families. They stress the importance of educating about
‘everyday’ asthma inhaler use (e.g. ‘preventers’,
‘controllers’), ensuring language is not a barrier, and suggest that
‘action plans with pictures of medicines rather than words may
help’.8,p41 No such asthma resource has
been available to health workers in New Zealand. Furthermore, no studies have
been published yet about the use of ‘pictorial’ asthma action plans
in children - of any ethnicity. There is a single study that evaluated a
pictorial asthma plan, but this was designed only for use in
adults.9
Recently, the Pharmaceutical Management Agency (PHARMAC)
launched Space to Breathe, an initiative that uses a personalised
asthma action plan with images of the child’s
inhalers.10 However, it has not been formally
evaluated, the resources are predominately textual, and are unavailable in the
first language for Pacific families. The ‘one-size-fits-all’
approach of the written asthma action plans that are commonly available in New
Zealand could be a potential barrier to effective asthma self-management support
in the Pacific community.
We have developed www.pamp.co.nz a web-based tool that health
professionals can use to produce personalised pictorial asthma resources in
English and three Pacific languages. The focus of the Pacific Asthma
Medication Plan, or PAMP, is on the child’s
‘everyday’ inhalers. Pre-printed information sheets about the signs
and symptoms of asthma are also available in the first language. These resources
are laminated together with fridge magnets attached for families to take
home.
The objective of this study was to evaluate: the utilisation
and acceptability of the resources, the effectiveness of the PAMP to
reinforce the importance of the ‘everyday’ inhalers and to act as a
reminder to use them regularly, changes in ‘everyday’ inhaler use
patterns, and the effectiveness of the asthma signs and symptoms sheets
to inform and improve self-efficacy. The primary outcome variable was continued
use of the resources after 6 months.
MethodsThis was a quantitative, prospective study conducted at
two sites from June 2009 to May 2010: West Fono Health Trust (a large Pacific
Health primary care provider in West Auckland servicing 360 enrolled asthmatic
children aged 2-16 years), and the Rangitira Unit, Waitakere Hospital (a 15-bed
children’s ward). Inclusion criteria were Pacific children aged 2-15 years
prescribed ‘preventer’ or ‘controller’ asthma
medications.
To generate a PAMP using the online tool,
details were entered about the child (age, gender), prescribed asthma inhalers
(one ‘reliever’ with variable fields for dose and frequency; up to
two ‘everyday’ inhalers with variable fields for dose and a default
frequency of twice a day), health professional (name, location, phone number),
and expiry date of the plan. These were printed in colour in the patient’s
choice of language/s (English, Samoan, Tongan or Tuvaluan), then laminated with
a pre-printed signs and symptoms sheet (also in the chosen language/s)
on the reverse, and fridge magnets attached (Figure 1).
Figure 1. PAMP (English and Samoan) and asthma
signs and symptoms sheet
  Participants were given the resources as part of the
routine face-to-face asthma education provided during their visit; six weeks
later they completed a structured questionnaire about the resources, either in
person at West Fono Health Trust, or by phone. For the purposes of follow-up,
patients visiting the Rangitira Unit were excluded if they were not enrolled at
West Fono Health Trust. The dates of initial visit and follow-up, the
family’s ethnicity, and language versions of the resources provided were
also recorded. Consultations were conducted in English by a registered health
professional. The questionnaire answers were collated and statistical analysis
carried out using SAS v9.1.3 software for Windows. An additional audit was
conducted 6 months after study completion to see if the families were still
using the resources.
Adult and child versions of the participant information
sheet and consent form were pre-tested for comprehensibility using key informant
interviews with six Pacific families; these were available in English only.
These documents were tested at a focus group of West Fono Health Trust staff who
also assisted with writing the asthma resources in the first language; the
choice of languages was aligned with the demographics of the local population.
Both groups provided feedback on the layout and design of the asthma resources.
The clinical content was compiled by the Quality Use of Medicines Team at
Waitemata District Health Board (DHB) and the asthma educators at West Fono
Health Trust; this was endorsed by a consultant paediatrician, a paediatric
clinical pharmacist, paediatric nursing staff, and Pacific Support Services at
Waitakere Hospital.
Changes in ‘everyday’ inhaler use before
and after receiving the asthma resources were investigated using repeated
measure analysis to adjust for child to child variability; inhaler use was coded
as: ‘never’ = 0; ‘few times a week’ = 3-5 (midpoint of 4
was used); ‘most days’ = 6-7 (midpoint of 6.5 was used).
The study had ethics approval from the Northern X
Regional Ethics Committee, Auckland (NTX/08/09/088).
ResultsNone of the study participants were recruited at the
Rangitira Unit during the 11-month study period because there were no hospital
admissions of West Fono Health Trust enrolled children who met the inclusion
criteria. A total of 52 children were recruited, but four children were excluded
(two were from non-Pacific families; two had incomplete consent forms); the
remaining 48 participants completed the structured questionnaire. Along with
parental consent, five older children also gave their assent to participate. The
primary visit and follow-up was performed by either of two registered practice
nurses who had completed an accredited asthma education course; one nurse
enrolled 45 of the participants.
Table 1 describes the patient demographics and utilisation
of resources. There were similar numbers of boys and girls, with an average age
of 6 years. Samoan made up the largest specific ethnicity (n = 31) in the whole
group. The median time to initial follow-up was 48 days. A total of 67 sets of
asthma resources were given to 48 families (45 English and 22 first language
versions).
Table 1. Patient demographics, distribution and
utilisation of resources
† Patients listed as ‘Other
Pacific’
* Includes five families that took longer than 60 days
to follow-up
Table 2 details the questions and responses in the
questionnaire. There were minor omissions in nine questionnaires; all available
responses were included in the analysis. The questionnaires were completed by
the child’s parent or caregiver.
Table 2. Questions and responses from
structured questionnaire
†
The table contains all 16 questions used in the
questionnaire
# Responses were missing for some questions; total is
less than number of participants in some instances
* Responses were associated with a
modified Likert-type scale using pictorial faces
Questionnaire responses indicated that all complete
respondents were still using the PAMP (45/45) at the 6-week follow-up,
with the majority kept on the fridge (45/47), and that for most it was the first
plan they had used (39/45). All six who had previously had an action plan
reported that the PAMP was better. Further positive responses indicated
from most respondents that the number of words and pictures in the PAMP
were ‘about right’.
Participants agreed that the PAMP reinforced the
importance of using the regular inhalers everyday (48/48), the inhaler images in
the PAMP acted as a reminder (47/48), the asthma signs and symptoms
sheets were informative (48/48), and the resources helped to improve
confidence (48/48). None of the families reported that they didn’t like
the PAMP, all intended to continue using it, and some (18/46) had
shared it with other people, e.g. the extended family (Table 2).
Questions 7 and 8 asked families about how often they used
the ‘everyday’ inhalers; 47 of the 48 families responded. A
statistically significant difference (p=0.014) in the trend of inhaler use was
observed, between before and after receiving the asthma resources, after
adjusting for the subject effect. There was an increase in the proportion of
children receiving these inhalers ‘most days’, from 15/47 (32%) at
recruitment to 32/47 (68%) after they received the education and resources; a
proportional increase of 36% (Table 2). Of the 47 children, 12 children used
their ‘everyday’ inhalers ‘most days’ at the beginning
and continued to do so.
For the remaining 35 children, their use can be described as
follows: unchanged: never∀never (1), few times a week∀few
times a week (5); decreased: few times a week∀never (2), most
days∀never (3); increased: few times a week∀most days (16);
never∀most days (4), never∀few times a week (4). Therefore, 24 of
the 35 children (69%) increased the frequency of their ‘everyday’
inhaler use.
The majority of the PAMPs utilised
Salamol® (a brand of salbutamol) and
Flixotide® (fluticasone) and all were valid
for a period of 6 months. The average reported time for staff to create each set
of laminated resources was 10 minutes. An audit by West Fono Health Trust staff
revealed that 6 months after the 6-week follow-up, 40/43 (93%) of families had
the original asthma resources in their possession and were still referring to
them.
DiscussionOur evaluation demonstrated that the two asthma resources
were fit for purpose. The majority of families found the design and layout
acceptable, and agreed that the resources reinforced the importance of
‘everyday’ inhaler use and helped to improve self-efficacy around
symptom recognition. The resources were well utilised by families, both at the
6-week follow-up and 6-month audit. Although subjective, 45 out of 47 families
said they ‘liked the plan’ – an important measure
nonetheless.
The Pacific Asthma Medication Plan, or
PAMP, appears to have been an effective reminder for families to use
the ‘everyday’ inhalers on a regular basis. We observed a
statistically significant change in inhaler use (p=0.014); the proportion of
children using their inhalers ‘most days’ increased from 32% at
baseline to 68% after they received the education and resources. However, the
extent to which the PAMP contributed to these improvements, versus the
effects from face-to-face education (and other factors) is unknown. This also
applies to the absence of asthma-related hospital admissions observed in the
children during the study, although fewer inpatient stays was the initial
rationale for developing the PAMP. Of concern were the five families
that reported reduced regular inhaler use; the reasons for this were not
recorded and would require further qualitative investigation.
For the purposes of this study, we developed and evaluated a
new asthma resource, which departs from the traditional step-wise, symptom or
peak flow-based format. The intention was to use a ‘less-is-more’
approach, mindful that about 50% of New Zealand adults have low literacy
levels,11 and that patients generally prefer,
simple, visual plans.12
We found there was demand for each of the first language
versions; 67 plans in four languages (45 English and 22 in the first language)
were given to 48 families. Just over a third shared their plans with the
extended family; the availability of ‘translated’ versions may have
facilitated this. Additionally, three families chose the first language version
only, which we suggest is evidence that current asthma resources may not be
meeting the needs of patients with adequate first language skills, but low
English literacy. Finally, only 13% of study families reported having been given
an asthma action plan previously, which is low relative to earlier
reports.6
To our knowledge this is the first evaluation of a pictorial
asthma plan designed especially for children - of any ethnicity. Roberts et
al, a group of British researchers, have published a report detailing the
development and comprehensibility of an electronic pictorial asthma action plan,
but this was only evaluated in Somali and Malaysian
adults.9 This group used ‘guessability
testing’ to show the pictograms were understood, and ‘translucency
testing’ to reveal agreement with the intended meaning of the images. In
our study, the pictorial elements were images rather than pictograms and we used
a less sophisticated, but more pragmatic study methodology.
The www.pamp.co.nz
website is not the first ‘electronic’ asthma plan to be devised. The
pictorial plan developed by Roberts et al required manual download of
the programme onto practice computers;13 others
have based their formats on Microsoft
Access®.14
In our case, we chose to construct a web-based tool (using Microsoft
.NET® framework) so it could be easily
accessed and shared with health professionals across New Zealand.
There are a number of limitations regarding this study; the
questionnaire was subjective in nature, the results were self-reported and
subject to social desirability bias, and the study was confined to a single
general practice. The 6-week follow-up period between visits may be perceived as
too short, but we believe this was sufficient time for families to familiarise
themselves with the resources. The strength of this research comes from the
inclusive study methodology, focus on a targeted population, and the high level
of consultation and engagement with the participant community and health
workers. Despite the resources being tested solely in Pacific children, we
believe the results are generalisable to other ethnicities; especially children
or caregivers who may benefit from their simple and pictorial nature.
In our study we have described a successful nurse-led
initiative in a single primary care practice. Further research could focus on
the use and utility of the resources within other primary care settings (and
secondary care), or by other professional groups. Roberts et al
conducted a follow-up study to examine the applicability of their pictorial
asthma tool in British general practices; they encountered barriers arising from
time pressures, staff apathy and change
avoidance.13 Even though the PAMP is
simple and quick to personalise, print and laminate, similar issues could be
expected here. Other priority research areas could focus on evaluating these
resources specifically in tamariki Māori.
The study findings are significant in the context of Pacific
Health because they describe and validate the useful textual and pictorial
characteristics of asthma resources that may assist with providing asthma
education to this population. This could be a step towards reducing the
significant asthma-related health inequalities observed in Pacific children.
However, asthmatic children from other ethnicities may also benefit from this
educational approach. In fact, the PAMP website has already been
re-branded as a paediatric Pictorial Asthma Medication Plan for use by
all ethnicities, and is currently being promoted as such to New Zealand health
professionals.
Competing interests: None known.
Author information: John Kristiansen,
Quality Use of Medicines Pharmacist, Waitemata District Health Board, Auckland;
Edlyn Hetutu (Asthma Nurse) and Moana Manukia (Nurse Team Leader), West Fono
Health Trust, Auckland; Timothy Jelleyman, Paediatrician, Waitakere Hospital,
Auckland
Acknowledgements: Moera Grace (former
Practice Manager) and staff at West Fono Health Trust; Rangitira Unit;
healthAlliance Web Design & Development; Funding and Planning Team
(especially Lita Foliaki and Dr John Huakau) and Quality Use of Medicines
Steering Group (especially Angela Lambie and Dr Frances McClure), Waitemata
District Health Board
Correspondence: John Kristiansen, Waitemata
DHB, Private Bag 93-503, Auckland 0622, New Zealand. Phone: 09 4868920; Fax: 09
4418957; Email: john.kristiansen@waitematadhb.govt.nz
References:
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