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| Journal of the New Zealand Medical Association,
05-November-2010, Vol 123 No 1325
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The Voice of Experience: Results from Cancer Control
New Zealand’s first national cancer care survey
Inga O’Brien, Emma Britton, Diana Sarfati, Wayne
Naylor, Barry Borman, Lis Ellison-Loschmann, Andrew Simpson, Craig Tamblyn,
Chris Atkinson
Quality cancer care has both technical and service
components. Technical skills are critical to the effective diagnosis and
treatment of disease. Service skills are required to holistically meet the needs
of patients’ and address their expectations. A combination of technical
and service skills is necessary to address cancer patients’ medical and
non-medical needs and wants over the duration of a cancer journey.
Patients’ experiences of care can be sought and reviewed with the goal of
incorporating these voices of experience into quality improvement efforts.
The importance of including the patient’s perspective
in evaluations of care is reflected in key New Zealand government documents such
as the New Zealand Health Strategy (2000), which has an underlying fundamental
principle that there should be “active involvement of consumers and
communities at all levels”.1
Additionally, two of the guiding principles of the New Zealand Cancer Control
Strategy (2003) are that activities should “ reflect a person-centred
approach” and “actively involve consumers and
communities”.2
Furthermore, the recent Ministerial review of the Health
System has described the “...Government’s vision of a public
health and disability service that is more patient- than provider-centric,
giving patients more control”.3
Analysing patients’ experiences of care, to inform improvements in health
services, adheres to these principles and ideas.
With the general public, healthcare professionals and the
Government all looking for improvements in the quality and delivery of cancer
care, surveying cancer patients’ experiences is a promising method of
exploring if the services consumers receive match their needs and expectations.
This type of survey puts the consumer at the centre of the evaluation of care
and the results provide stakeholders with a unique perspective on New
Zealand’s performance in providing quality cancer care.
In 2009, Cancer Control New Zealand (CCNZ), formerly known
as the Cancer Control Council, initiated the Cancer Care Survey, which was the
first national survey of cancer patient experiences.
The overall aim of this study was to collect data on how
well outpatient cancer treatment services were meeting the needs and
expectations of cancer patients. CCNZ’s specific 2009 Cancer Care Survey
objectives were to:
Three reports on the Cancer Care Survey have been
written and are available on CCNZ’s website (www.cancercontrolnz.govt.nz). The
Voice of Experience Part One report provides preliminary national
results from the survey.4 The Voice of
Experience companion report provides the results for the eight
participating cancer treatment services.5 The
Voice of Experience Part Two report6
includes a select review of the patient experience literature, in-depth analysis
of the survey data, and recommendations.
This article focuses on summarising the overall national
findings from the survey.
MethodsParticipants and setting—The
target population for the survey was patients 18 years of age and older with a
confirmed diagnosis of cancer who had undergone, or were undergoing, publicly
funded cancer outpatient treatment (specifically chemotherapy or radiotherapy)
in New Zealand. Patients were excluded from the survey if they had no fixed
address, had moved out of New Zealand, were not residents of New Zealand, had
received only inpatient services, or were deceased.
The participating facilities included the six regional
cancer centres providing the majority of cancer services in New Zealand
(Canterbury Oncology Service, Northern Region Cancer Centre, Palmerston North
Regional Cancer Treatment Service, Southern Blood and Cancer Service, Waikato
Regional Cancer Centre, and Wellington Blood and Cancer Centre) and two
satellite chemotherapy treatment facilities with vocationally registered
oncologists on staff (Nelson Oncology Service and Tauranga & Whakatane
Cancer Centres). These services provided lists of all their outpatients who met
the criteria for the study during the 6-month period from 1 October 2008 to 31
March 2009.
A sample was randomly drawn from these lists with an
aim to select 500 people from each cancer treatment service. If less than 500
people were submitted by a cancer treatment service then all individuals were
selected.
All those who had their ethnicity recorded as
Māori but had not been randomly selected, were also included in the sample.
This oversampling process aimed to increase the precision of the estimates for
Māori. Prior to proceeding with the survey, ethics approval was obtained
from the Multi-Region Ethics Committee (MEC/09/22/EXP).
Survey instrument—The 2009
Cancer Care Survey, a tool developed and
validated7 by NRC+Picker (USA), was mailed to
the selected participants. The questionnaire included 96 questions, with
multiple response options, covering a variety of patient experiences related to
their cancer treatment, including their diagnosis, treatment (surgery,
chemotherapy and radiotherapy), symptom management, healthcare team, care
environment and overall impressions of care. The survey also contained
demographic questions including the respondent’s age, gender, household
annual income after tax and ethnicity.
Surveys were posted to 3525 selected participants and
were also available online. A covering letter, signed by Dame Catherine Tizard
(CCNZ chair 2005–2009), explaining the importance of the survey was
attached to each survey form. To increase the response rate, posters about the
survey were placed in cancer treatment service waiting rooms and patient support
service buildings. A telephone help line was set up to answer any queries from
survey recipients. Reminder post cards and a second survey were sent out to
those who had not responded to the initial survey after 6 weeks.
Analysis—The data analysis was
carried out using Stata (StataCorp LP) software, versions 9.2 and 10. The
distribution of the target, surveyed and eligible respondent populations were
compared across key demographic characteristics, and the response rates were
also compared across the different ethnic, age, gender, income and cancer
treatment service groups.
The sample data were weighted to take into account the
probability of selection. Post stratification weights were also calculated for
each respondent using the age and ethnicity distribution of the target
population in each cancer treatment service.
Sixty-five of the 96 survey questions had ordinal
categorical response options which could be grouped into dichotomised positive
and negative response categories. In this ‘top box’ scoring
approach, only the ‘ideal’ response, such as “always” or
“definitely”, was equated with a positive response. This
categorisation process allowed the questions to be rank ordered from the highest
percentage of positive responses to those with the lowest percentage of positive
responses, so the questions in the upper and lower quartiles could be examined
both nationally and at the individual cancer treatment service levels.
ResultsIn total 3525 people were mailed surveys. A total of 410
people were excluded (136 during pre-mailing checks, 254 post mailing and 20
post data cleaning). Replacements were randomly selected from the corresponding
patient lists for the 136 people excluded pre-mailing.
Reasons for the 274 exclusions post-mailing included: the
person was deceased, the person stated they did not receive treatment for
cancer, the person was too unwell or otherwise unable to complete the survey,
the survey being returned to sender as undeliverable, or the returned
questionnaire being illegible or damaged. The final total survey population was
3251. Of the 3251 eligible respondents, surveys were returned by 2221 people
resulting in a 68% final response rate.
According to the ethnicity information obtained from the
cancer treatment services, New Zealand Europeans made up 69% of the respondent
population, while 13% were Māori, 3% were Asian, and 2% were Pacific
Islanders (Table 1). The highest proportion of eligible respondents was in the
50–69 years age group and over half of the survey population was female.
The proportion of those within the different ethnic, age,
and gender groups in the targeted, surveyed and respondent populations were
similar (Table 1). For example, 50% of the targeted population, 49% of the
surveyed population and 51% of the respondent population were in the 50–69
years age group.
Although the overall response rate for Māori was lower
(51%) than for New Zealand Europeans (74%), the proportion of Māori in the
surveyed population was higher than the proportion of Māori in the targeted
population due to deliberate over-sampling.
* The original target population
includes everyone submitted from the cancer service patient lists and includes
people who were subsequently excluded on the basis of being deceased, not having
received treatment for cancer, being too unwell or unable to complete the
survey, the survey being returned to sender as undeliverable, or the returned
questionnaire being illegible or damaged.
** Includes Maori selected by the oversampling process.
† Cancer treatment services are
required to collect ethnicity data from people accessing their services based on
the Ministry of Health Ethnicity Data Protocols for the Health and Disability
Sector. There were minor variations between the ethnicity data collected by the
cancer treatment services and the self-reported ethnicity data collected by the
survey.
‡ For the sample and eligible
respondent populations, gender was imputed from the person’s title or
name, as gender information was not included in the cancer treatment
services’ lists. Target population proportions for gender were estimated
using sample proportions.
Figure 1 presents the range of national and individual
treatment service percent positive score results for a subset of survey
questions. The national score is shown alongside the participating cancer
treatment service scores for comparison purposes. Overall, the survey questions
tended to have a high percentage of positive responses.
In Figure 1, the questions with the highest percentage of
positive responses were related to specialist care coordination (91% positive
response; 95% CI: 90–93) and the level of dignity and respect provided by
healthcare professionals (86% positive response; 95% CI: 85–88). Whereas,
the questions on information clarity (54% positive response; 95% CI:
52–57) and provision of referrals for emotional support (36% positive
response; 95% CI: 33–39) received a lower percentage of positive
responses.
Figure 1. National responses to a selection of
key survey questions
 For most survey questions, the individual treatment service
results were tightly clustered around the national-level result (Figure 1).
However, as shown in Table 2, 12 survey questions demonstrated at least a 20%
difference between the lowest and highest treatment service scores, indicating
some significant differences in patient experiences between treatment
services.
The key national strengths and opportunities for improvement
are shown in Tables 3 and 4. These were identified from examining the upper and
lower quartiles of the ranked survey questions. The aspects of care with a high
percentage of positive responses were identified as strengths (Table 3).
Table 2. Aspects of care with substantial differences in positive
scores between cancer treatment services
CI=confidence interval; * For these confidence
intervals the sample sizes in the strata were very small, so strata were
collapsed together to calculate the confidence intervals. The confidence
intervals here are very wide indicating that the point estimate is not a
reliable estimate of the ‘true’ value.
Table 3. National
strengths of outpatient cancer care, as indicated by aspects of care receiving
the highest percentage of positive responses in the survey
The aspects of care with a low percentage of positive
responses were identified as opportunities for improvement (Table 4).
Table 4. National
opportunities for improvement in outpatient cancer care, as indicated by aspects
of care receiving the lowest percentage of positive responses in the
survey
DiscussionMost of the people who participated in the 2009 Cancer Care
Survey responded very positively to questions on care coordination and the level
of privacy, dignity and respect provided. The majority also felt that care
providers were doing everything they could to treat their cancer. Even though
overall care was rated highly, focusing on patients’ experiences exposed
areas where action is needed to improve the quality of care. These areas include
providing more information on potential changes in aspects of day-to-day living,
facilitating opportunities for emotional support, providing better explanations
for waiting times, and treating patients more within the context of their own
lives.
The results of this first Cancer Care Survey in New Zealand
provide a baseline for future monitoring of patients’ experiences of
cancer care. This survey found that each cancer treatment service had different
areas where it performed relatively well and where there were opportunities for
improvement.
While cancer treatment service results tended to follow the
same general pattern as the national-level results, responses to 12 questions
demonstrated variation with at least a 20% difference in scores between the
cancer treatment service with the highest positive score and the cancer
treatment service with the lowest positive score.
Although this analysis found that there is no single
‘best’ patient experience of care model, cancer treatment services
can collaborate to allow regional champions for particular aspects of care to
share approaches for improving the patient experience.
Both technical and service aspects of care comprise quality
service delivery just as both clinical outcome and personal experiences are
important aspects of patient expectations.8
Results from this first Cancer Care Survey suggest that
technical aspects of care tend to meet most patients’ expectations while
service aspects of care often do not meet patients’ highest expectations.
These indicate important opportunities for improvement given that service
responsiveness has been posited to:
Because
quality care is the “...cumulative result of the interactions of people,
individuals, teams, organizations and
systems”,11 multiple strategies and
voices will be required to advocate for the need to optimise both the technical
and service aspects of providing effective cancer care.
This was a relatively large survey, of a randomly selected
population, which used a questionnaire that, although it contained minor
adaptations for a New Zealand context, was based on material that had been well
tested and administered internationally.7,12,13
A high response rate was achieved.
The study did, however, have several limitations. The
strengths and opportunities for improvement sections presented in the results
reflect the experiences of the majority of respondents, whose experiences may be
different from those of minority groups within the sample, and those who chose
not to respond to the survey. Furthermore, there is no single definition of
‘best patient experience’ due to differing expectations and
perceptions of what is effective and appropriate cancer care delivery across
individuals and population groups. Additionally, as this was a quantitative
study, responses were restricted to categories provided in the survey, limiting
the amount of information that could be gathered on the context of the
patients’ experiences.
Whilst the questionnaire has been validated in the USA by
NRC+Picker, and utilised in Australia and Canada, a few of the questions may not
be as applicable to the New Zealand health system. However, the authors believe
that the survey utilised provides valuable insights into the perceptions of
cancer management in New Zealand and that no survey instrument can perfectly
measure the complexities of patient experiences of healthcare services.
Further research could assist in addressing some of these
limitations. There is a need for more in-depth exploration of Pacific and Asian
cancer patient experiences as these population groups were under-represented in
this survey. Further, large cancer centres, particularly Auckland, have been
under-represented in this project and would benefit from follow-up research to
validate the findings from this survey. In regard to the data analysis, a
sensitivity analysis of the different positive response thresholds would provide
useful information on the utility of the ‘top box’ scoring approach
for reporting results.
It is recommended that the findings from this survey
progress the debate around the role and meaning of patient-centred care in New
Zealand. Results can also inform the development of actionable and standardised
patient-reported outcomes. Further, survey findings can be linked to findings
from related projects, such as the National Cancer Psychosocial Services
Stocktake 2005–2006,14 to inform
development of the Implementation Plan for the Supportive Care
Guidance.15
Finally, a robust cancer patient needs assessment, one that
is able to identify changing needs along a cancer journey, can provide a broader
patient-focused perspective on quality improvement priorities.
The 2009 Cancer Care Survey data provides a
consumer-perspective on the performance of cancer outpatient services. CCNZ has
found that cancer patient experience surveys can achieve high response rates and
generate useful consumer-reported views on cancer care delivery that could be
integrated with evidence-based practice to inform quality improvement efforts.
The results of this first Cancer Care Survey in New Zealand
will act as a benchmark against which the results of future cancer patient
experience surveys can be compared. This will be crucial for monitoring the
impact of new initiatives to improve the quality of cancer care.
Notes: This is a summary of
information presented in the Voice of Experience report series available from
Cancer Control New Zealand (www.cancercontrolnz.govt.nz).
Competing interests: None.
Author information: Inga O’Brien,
Senior Analyst, Cancer Control New Zealand, Wellington; Emma Britton, Public
Health Registrar, Cancer Control New Zealand, Wellington; Diana Sarfati, Senior
Lecturer and Public Health Physician, Department of Public Health, University of
Otago, Wellington; Wayne Naylor, Senior Analyst, Palliative Care Council of New
Zealand, Wellington; Barry Borman, Associate Professor, Centre for Public Health
Research, Massey University, Wellington; Lis Ellison-Loschmann, Research Fellow,
Centre for Public Health Research, Massey University, Wellington; Andrew
Simpson, Clinical Director, Wellington Blood & Cancer Centre, Capital &
Coast District Health Board, Wellington; Craig Tamblyn, General Manager, Cancer
Control New Zealand, Wellington; Chris Atkinson, Chair, Cancer Control New
Zealand, Wellington
Acknowledgements: We thank Cancer Control
New Zealand and The New Zealand Population Health Charitable Trust for project
funding; the 2009 Cancer Care Survey Advisory Group (Dr Diana Sarfati, Associate
Professor Barry Borman, Professor Neil Pearce, Professor Tony Blakely, Dr Andrew
Simpson, Ms Astrid Koorneef and Dr Lis Ellison-Loschmann) for survey advice; and
Robert Templeton (Principal Technical Specialist) and Roy Costilla
(Advisor-Statistics) at the Ministry of Health for statistical advice. Lastly,
we gratefully acknowledge the willingness of people affected by cancer to share
their views and experiences of health services they received.
Correspondence: Craig Tamblyn, Cancer
Control New Zealand, PO Box 5013, Wellington, New Zealand. Fax: +64 (0)4
8159249; email: craig_tamblyn@cancercontrolnz.govt.nz
References:
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