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THE NEW ZEALAND
MEDICAL JOURNAL
Journal of the New Zealand Medical Association
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 10
URL: http://www.nzma.org.nz/journal/123-1325/4419/ ©NZMA
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
Abstract
Aims The 2009 Cancer Care Survey aimed to gather information from patients about
their experiences receiving outpatient cancer care.
Methods In mid-2009, Cancer Control New Zealand sent an NRC+Picker postal
survey to a stratified sample of 3251 eligible adults, who had received outpatient
cancer care between October 2008 and March 2009. Eight cancer treatment facilities
across New Zealand provided patient lists from which potential respondents were
selected.
Results The final response rate to the survey was 68%. Most of the patients surveyed
responded very positively to questions related to specialist care coordination (91%
positive response; 95%CI: 90–93), the level of privacy (87% positive response;
95%CI: 85–89), and the dignity and respect provided by healthcare professionals
(86% positive response; 95%CI: 85–88). However, patients tended to be much less
positive about the level of information they received on the effects of cancer treatment
on their day-to-day life (responses ranging between 30% and 40% positive) and the
level of emotional support provided (36% positive response; 95%CI: 33–39).
Responses from different cancer services tended to follow similar patterns, although
for twelve questions there was at least a 20% difference in response between services.
Conclusions Overall, patients rated their outpatient cancer care experiences as
positive, but important gaps exist in the provision of information, emotional support,
and treating patients within the context of their living situation. Cancer patient
experience surveys can achieve high response rates and generate useful information
on patient perceptions of their care. This data can be used to inform quality
improvement efforts at both national and cancer treatment service levels.
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
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 11
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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:
• Generate and analyse data on patients’ experiences of cancer care, to inform
advice provided to the Minister of Health and other key stakeholders
• Provide baseline data on cancer patient experiences that can be compared with
data collected in subsequent surveys, so that the impact of system changes on
patients’ experiences of care can be explored over time.
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 report
6
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.
Methods
Participants 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.
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 12
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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 validated
7
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.
Results
In 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.
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 13
URL: http://www.nzma.org.nz/journal/123-1325/4419/ ©NZMA
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.
Table 1. Characteristics of the target, surveyed and eligible respondent
populations
Characteristics Original target population*
% (n)
Surveyed population**
% (n)
Eligible respondents
% (n)
Ethnicity
†
NZ European
Māori
Pacific Island
Asian
Other
68 (4885)
10 (736)
3 (185)
4 (267)
15 (1104)
63 (2051)
18 (586)
2 (79)
3 (99)
13 (436)
69 (1525)
13 (296)
2 (35)
3 (58)
14 (307)
Age group
<30
30–49
50–69
>70
2 (155)
17 (1219)
50 (3611)
31 (2192)
2 (76)
18 (590)
49 (1590)
31 (995)
1 (32)
16 (357)
51 (1129)
32 (703)
Cancer treatment service location
Auckland City
Tauranga
Waikato
Palmerston North
Wellington
Nelson
Canterbury
Dunedin
33 (2355)
12 (895)
20 (1427)
13 (945)
7 (503)
1 (100)
11 (805)
2 (147)
18 (586)
16 (504)
15 (494)
16 (517)
15 (489)
3 (88)
14 (442)
4 (131)
16 (354)
16 (348)
14 (308)
16 (352)
17 (369)
3 (70)
15 (337)
4 (83)
Gender
‡
Female
Male
59 (4234)
41 (2943)
59 (1920)
41 (1331)
59 (1317)
41 (904)
Total 7177 3251 2221
* 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
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 14
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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).
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 15
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Table 2. Aspects of care with substantial differences in positive scores between
cancer treatment services
Survey question response indicating positive outcome Highest cancer
treatment service
% positive score (CI)
Lowest cancer
treatment service
% positive score (CI)
Never waited longer than expected for first treatment
appointment
92 (82–96) 67 (62–72)
Travel concerns definitely considered in treatment planning 71 (54–83) 43 (37–50)
Waited less than 30 minutes for scheduled chemotherapy
treatment appointment
88 (82–93) 62 (54–69)
Never waited longer than expected for chemotherapy treatment 85 (74–91) 51 (43–58)
Staff always did everything they could to make the wait for
chemotherapy comfortable
88* (69–96) 63 (53–72)
Never waited longer than expected for radiation therapy 63 (56–68) 36 (30–42)
Staff always did everything they could to make the wait for
radiation therapy comfortable
96 (75–99.6) 53* (20–84)
Someone always told the patient how to manage any side effects
of radiation therapy
95 (82–99) 71 (61–80)
Always offered counseling or support relating to issues such as
concerns about cancer or coping at home / work
57 (42–71) 36 (31–42)
Over the past 12 months, someone at the hospital definitely put
the patient in touch with other doctors, nurses or healthcare
professionals who could help with anxieties and fears, if it was
needed
55* (40–70) 28 (22–34)
Always got as much help as was wanted in figuring out how to
pay for any extra costs related to cancer care
79 (65–89) 56 (46–65)
Availability of parking good, very good or excellent 84 (80–88) 38 (27–51)
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
Aspects of care National %
positive response
(CI)
Comments
Coordination of specialist care 91 (90–93) Many of the surveyed patients reported they had
visited multiple doctors, with nine out of ten
people (91%) indicating that the specialist care
co-ordination was good, very good or excellent.
Ease of understanding directions/signs 90 (89–92)
Noise control at the cancer treatment services 90 (88–91)
Level of privacy provided 87 (85–89)
Dignity and respect provided 86 (85–88)
Care providers doing everything they could to
treat cancer
83 (81–85) 8 out of 10 people (83%) reported that they felt
doctors, nurses and other healthcare
professionals did everything they could to treat
their cancer. A similar proportion (81%)
reported they would recommend their healthcare
team to family and friends.
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 16
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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
Aspects of care National % positive
response (CI)
Comments
Information provided on changes in
relationships
(when needed)
Information provided on changes in sexual
activity
(when needed)
32 (29–35)
31 (28–34)
Less than half of those surveyed reported
always getting enough information on these
aspects of daily living.
Explanations provided for any treatment
waiting times
34 (30–37) Seven out of 10 people reported that they did
not feel it was adequately explained why they
had to wait for their first cancer treatment
appointment. However, only three out of ten
people (27%) reported that they felt that they
waited too long to get their first cancer
treatment appointment.
Being put in touch with care providers to help
with anxiety and fear
(if this was required in the 12
months post diagnosis)
Being put in touch with care providers to help
with anxiety and fear
(when first told of illness)
36 (33–39)
47 (44–50)
More people, about half of those who had
anxieties and fears (47%), felt that they were
put in touch with other healthcare
professionals who could help them at the time
of their initial diagnosis compared with post
diagnosis, when only four out of 10 (36%)
reported being provided satisfactory emotional
support.
Information provided on changes in emotions
(when needed)
39 (36–42) Less than half of those surveyed reported
always getting enough information on this
aspect of daily living.
Living situation taken into account when
planning for treatment
49 (46–51) Approximately half of those sampled reported
that they did not feel that healthcare providers
did their best to take their family or living
situation into account when planning for
treatment. A similar number (48%) had travel
concerns that they felt had not been adequately
considered in their treatment planning.
Discussion
Most 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.
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 17
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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:
• Improve adherence by individuals to medical advice;
9
• Lead to better compliance with cancer treatment regimens;
10
and
• Improve patient health status.
8
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
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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
NZMJ 5 November 2010, Vol 123 No 1325; ISSN 1175 8716 Page 19
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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
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