Outpatient Cancer Clinics Survey 2017 - Bureau of Health ... · 5) Clinics in Sydney Adventist Private Hospital were identified by the management of the hospital, and a data extract

Outpatient Cancer Clinics Survey 2017

Technical Supplement

December 2018

Bureau of Health Information | Technical Supplement: Outpatient Cancer Clinics Survey 2017 i

Contents

NSW Patient Survey Program ............................................................................................................................ 1

Outpatient Cancer Clinics Survey ....................................................................................................................... 2

Producing the survey samples ....................................................................................................................... 3

Drawing the sample ....................................................................................................................................... 4

NSW outpatient cancer clinics inclusion criteria ............................................................................................ 4

Data management .............................................................................................................................................. 6

Data analysis ...................................................................................................................................................... 7

Completeness of questionnaires .................................................................................................................... 7

Response rate ................................................................................................................................................ 7

Weighting of data ........................................................................................................................................... 9

Demographic characteristics of respondents to Outpatient Cancer Clinics Survey 2017 ............................. 9

Reporting .......................................................................................................................................................... 11

Confidentiality ............................................................................................................................................... 11

Reporting of private facilities ........................................................................................................................ 11

Statistical analysis ........................................................................................................................................ 11

Calculation of percentages .......................................................................................................................... 13

Appendix 1: Facilities included in the Outpatient Cancer Clinics Survey 2017 sampling frame ...................... 14

Appendix 2: Missing and ‘don’t know’ responses ............................................................................................. 16

Appendix 3: Derived measures ........................................................................................................................ 20

Appendix 4: Tier 2 composition of clinic, by facility ............................................................................................ 1

Suggested citation:

Bureau of Health Information. Technical Supplement: Outpatient Cancer Clinics Survey 2017. Sydney

(NSW); BHI; 2018.

Date of publication: December 2018

Please note that there is the potential for minor revisions of data in this report. Please check the online

version at bhi.nsw.gov.au for any amendments.

http://www.bhi.nsw.gov.au/

Bureau of Health Information | Technical Supplement: Outpatient Cancer Clinics Survey 2017 1

NSW Patient Survey Program The NSW Patient Survey Program began sampling patients in NSW public facilities from 2007. Up to mid-

2012, the program was coordinated by the NSW Ministry of Health (Ministry) using questionnaires obtained

under licence from NRC Picker. Responsibility for the NSW Patient Survey Program was transferred from the

Ministry to the Bureau of Health Information (BHI) in July 2012. BHI has a contract with Ipsos Social

Research Institute to support data collection, while BHI conducts all survey analysis.

The aim of the program is to measure and report on patients’ experiences and outcomes of care in public

healthcare facilities in New South Wales (NSW), on behalf of the Ministry and local health districts (LHDs).

This document outlines the sampling methodology, data management and analysis of the Outpatient Cancer

Clinics Survey 2017. This survey also includes two private facilities that are contracted by the local LHD to

treat public patients. The results are used as a source of performance measurement for individual hospitals,

LHDs and NSW as a whole. In particular, NSW Cancer Institute uses the results of the Outpatient Cancer

Clinics Survey in their discussions with LHDs as part of the Reporting for Better Cancer Outcomes program.

For more information on how to interpret results and statistical analysis of differences between facilities and

NSW, please refer to the Guide to Interpreting Differences on BHI’s website at

bhi.nsw.gov.au/nsw_patient_survey_program.

http://www.bhi.nsw.gov.au/nsw_patient_survey_program


Outpatient Cancer Clinics Survey The Outpatient Cancer Clinics Survey 2017 was undertaken as part of the NSW Patient Survey Program,

administered by BHI. The survey was designed in collaboration with the Cancer Institute NSW, though all

analyses are conducted by BHI. The 2017 survey is the third undertaken, following surveys in 2015 and

2016.

1.1.1.Definition of an ‘outpatient’

Outpatients are those patients whose care is provided by a hospital but are not admitted for care. The types

of services these patients receive vary greatly, including allied health services (such as physiotherapy, social

work, nutrition and psychology), dental care, dialysis, cancer treatment, medical services and surgery

preparations and follow-up. The way these services are provided varies widely, most commonly in a regularly

occurring clinic operated by medical staff.

Definition of an ‘outpatient cancer clinic’

This survey targets outpatient clinics that mainly provide oncology, chemotherapy and radiotherapy services

based on the Tier 2 classification of clinics. BHI also identified additional clinics that appear to mainly provide

care for people with cancer (see Drawing the sample). All clinics in public hospitals identified for participation

in the survey were approved for inclusion by the LHD Directors of Area Cancer Services, or their equivalent

in many rural settings. Patients also attend these clinics for treatment for reasons other than cancer, such as

haemoatolgy-related services unrelated to cancer of the blood. In the Outpatient Cancer Clinics Survey

2017, 82% of respondents said they attended the clinic because they have or have had cancer (down from

88% in 2016).

Two private facilities were included in the survey scope. These facilities – Chris O’Brien Lifehouse and The

Sydney Adventist Private Hospital are contracted by LHDs to provide services for public patients. Given

Chris O’Brien Lifehouse reports data to the same source as public hospitals, its clinic list is consistent with

that used for those facilities. The Sydney Adventist Private Hospital provided a special data extract from

clinics that they considered appropriate for inclusion.


Producing the survey samples The NSW Patient Survey Program assures patients their responses will be confidential and that staff at

hospitals will not be able to identify individual patients. BHI achieves this through a number of

mechanisms, including:

reporting aggregated results

data suppression (of results based on fewer than 30 respondents)

de-identification of patient comments

segregation of roles when constructing survey samples (see below).

The sampling method for the NSW Patient Survey Program requires collaboration between staff at BHI,

Ipsos and the Ministry’s System Information and Analytics (SIA) branch (see Figure 1). All surveys of

outpatients use data obtained from the Ministry’s EDWARD Non-admitted Patient (NAP) Activity Data Mart.

Figure 1: Organisational responsibilities in sampling and survey processing, Outpatient Cancer Clinics Survey 2017

BHI

SIA

BHI

SIA

Ipsos

• Determine inclusion and exclusion rules in association with stakeholders

• Extract sampling frame from NAP datamart based on data for patients attending clinic in November 2017, include on basis of criteria provided by BHI

• Provide a summary dataset to BHI.

• Identify facilities that are missing from the summary dataset • Develop sampling strategy based on summary dataset provided by SIA • Calculate target sample sizes and provide to SIA • Liaise with LHDs to request specific data extracts from facilities missing from the

summary dataset.

• Undertake cleaning of data and deduplication across all surveys in effect • Generate samples based on sampling targets provided by BHI • Provide mailing list via secure file transfer to Ipsos.

• Administer the survey fieldwork, collate and clean results • Provide datafile of results to BHI for analysis, via secure file transfer of de-identified

unit record file.


Drawing the sample The sampling frame for the Outpatient Cancer Clinics Survey 2017 was based on data in the NSW non-

admitted patient database (EDWARD Non-admitted Patient [NAP] Activity Data Mart). Due to data quality

issues in the NAP dataset, BHI contacted individual data managers to provide unit-level data extracts directly

to SIA for approximately one-third of LHDs. Data for The Sydney Adventist Hospital was provided through a

data request. On the other hand, data for Chris O’Brien was provided through the NAP database. As BHI

does not have access to confidential non-admitted patient data, sample sizes for each hospital were

calculated based on aggregated clinic-level data provided by SIA.

For the Outpatient Cancer Clinics Survey 2017, the sampling frames were defined as patients aged 18 and

over who attended one of the included NSW outpatient cancer clinics during November 2017. The date of

attendance was used to define eligible patients to participate in the survey.

NSW outpatient cancer clinics inclusion criteria

Clinics in public hospitals and in Chris O’Brien Lifehouse were defined using a three-step process:

1) All clinics were defined as belonging to one of the seven cancer clinic types presented in Table 1, except

those in Sydney Children’s Hospital Randwick or The Children’s Hospital at Westmead. These are

excluded as most patients from these facilities are under the age of 18.

2) Addition of extra clinics were identified as having ‘cancer’, ‘oncol*’, ‘radiation’, ‘radioth*’, ‘chemo*’ and

‘melanoma’ in the clinic name AND approved for inclusion by the Director Area Cancer Services (or

equivalent) for each LHD (see ‘Other’ column in Table 5).

3) Addition of extra clinics and services such as haematology and genetics that were identified by the

Director Area Cancer Services at their discretion and requested to be included in the survey (see ‘Other’

column in Table 5).

4) If unit level data were not available through the NAP datamart, BHI approached the LHD directly to

request a data extract be supplied to SIA to allow sampling to occur. If this was not possible then the

facility was not able to be included in the survey.

5) Clinics in Sydney Adventist Private Hospital were identified by the management of the hospital, and a

data extract supplied directly to SIA.

Table 1: Tier 2 services included for sampling and reporting, Outpatient Cancer Clinics Survey 2017 Tier 1 name Tier 2 code Tier 2 name Reporting

Chemotherapy 10.11 Medical oncology (treatment) Chemotherapy

Oncology 10.12 Radiation oncology (treatment) Radiotherapy

Oncology 10.20 Radiation therapy – simulation and planning Radiotherapy

Medical consultation 20.39 Gynaecology oncology Oncology

Oncology 20.42 Medical oncology (consultation) Oncology

Oncology 20.43 Radiation oncology (consultation) Radiotherapy

Oncology 40.52 Oncology Oncology

BHI specified the following inclusion and exclusion criteria to SIA, who undertook the sampling of patients

eligible to participate in this survey.


Where patients had multiple visits during the sampling month, they were included for their most recent visit.

The questionnaire asked patients to reflect on their visit to the clinic in November 2017.

1.1.2.Screening

Once SIA received all data extracts and the complete sampling frame on the basis of these inclusion criteria,

including patient name and address information, the data were passed through additional checks as

presented below.

Exclusions:

invalid address (including those with addresses listed as hotels, motels, nursing homes, community

services, Matthew Talbot hostel, 100 William Street, army quarters, jails, unknown)

invalid name (including twin, baby of)

invalid date of birth

on the ‘do not contact’ list

sampled in the previous six months for any BHI patient survey

had a death recorded according to the NSW Birth Deaths and Marriages Registry and/or the Agency

Performance and Data Collection, prior to the sample being provided to Ipsos.

The data following these exclusions is defined by BHI as the final sampling frame.

A target was set of 1000 patients per facility. This means that any facility with less than 1000 eligible patients

is subject to a census, while simple random sampling took place for any facility with more than 1000 patients.

A resultant list of the 50 sampled facilities and the total number of outpatients eligible for sampling versus

outpatients sampled for the survey for 2017 is provided in Appendix 1.


Data management

Data collection

After completing a hard copy or online survey, the respondent is required to return or submit the completed

survey to Ipsos. Paper format surveys are scanned for fixed response options and manually entered in the

case of free text fields. All text entry fields are checked for potential identifiers (names of patients and

doctors, telephone numbers, etc.) and any that are found are replaced with ‘XXXX’.

Following this, each record is checked for any errors in completion and reasonable adjustments, known as

‘cleaning’, are made to the dataset, for example, removing responses where the patient has not correctly

followed questionnaire instructions or has provided multiple answers to a single response question.

At the end of this process, Ipsos uses a secure Ministry system to transfer data from their servers to BHI’s

secure servers, all of which are password protected with limited staff access.

At no stage does BHI, who analyses the data, have access to the names and contact details of the

respondents. This ensures respondent answers remain confidential and identifying data can never be

publicly released.


Data analysis

Completeness of questionnaires

In the Outpatient Cancer Clinics Survey 2017, the completeness of responses was very high, with 99% of

respondents answering at least 40 out of 78 questions.

Response rate

The response rate is the proportion of people sampled in the survey who actually completed and returned

their questionnaire. The response rate, number of mailings and patient population distribution are reported

for NSW in Table 2. Additional tables present the actual number of surveys mailed to eligible patients, the

number of responses received and the response rate, by LHD and hospital (Tables 3 and 4 respectively).

For reasons of data quality and patient confidentiality, hospitals or LHDs with fewer than 30 respondents are

not publicly reported, although these responses are still included in LHD and NSW totals.

Table 2: Eligible NSW population, sample and respondents for Outpatient Cancer Clinics Survey 2017

Eligible patient population

Mailings (in scope) Population in mailings Total respondents Response rate (%)

33,809 22,934 68% 11,301 49

Table 3: Sample size and response rates by LHD*, Outpatient Cancer Clinics Survey 2017 Local Health District Mailings (in scope) Total

respondents Response rate (%)

Central Coast 1,301 701 54

Far West 53 17 32

Hunter New England 2,318 1,237 53

Illawarra Shoalhaven 1,654 974 59

Mid North Coast 1,798 1,057 59

Murrumbidgee 116 65 56

Nepean Blue Mountains 974 485 50

Northern NSW 1,189 579 49

Northern Sydney 1,090 555 51

South Eastern Sydney 2,666 1,171 44

Southern NSW 500 263 53

St Vincent's Health Network 963 349 36

South Western Sydney 2,456 1,075 44

Sydney 1,033 464 45

Western NSW 1,367 687 50

Western Sydney 1,935 873 45

* Private facilities are not included in this table as they are not managed by the LHD.


Table 4: Sample size and response rates by hospital, Outpatient Cancer Clinics Survey 2017 Hospital Mailings (in scope) Total

respondents Response rate (%)

Armidale Hospital 229 115 50

Auburn Hospital* 39 9 23

Bankstown-Lidcombe Hospital 547 213 39

Bathurst Health Service 289 139 48

Bega Valley Community Health 79 44 56

Blacktown Hospital 907 416 46

Bourke Street Health Service 109 57 52

Broken Hill Health Service* 53 17 32

Calvary Mater Newcastle 977 566 58

Campbelltown Hospital 927 420 45

Chris O'Brien Lifehouse 989 431 44

Coffs Harbour Health Campus 977 532 54

Concord Repatriation General Hospital 897 410 46

Cooma Hospital and Health Service* 36 17 47

Cowra Health Service* 24 13 54

Dubbo Base Hospital 360 160 44

Eurobodalla Community Health 156 95 61

Gosford Hospital 964 522 54

Goulburn Community Health Service* 37 20 54

Grafton Base Hospital 131 55 42

Griffith Base Hospital 76 39 51

John Hunter Hospital 170 70 41

Lachlan Health Service – Parkes* 22 9 41

Lismore Base Hospital 399 213 53

Liverpool Hospital 982 442 45

Manly Hospital 107 54 50

Manning Hospital 281 166 59

Milton Ulladulla Hospital 51 34 67

Moree Hospital* 70 27 39

Muswellbrook Hospital* 50 21 42

Nepean Hospital 974 485 50

Orange Health Service 672 366 54

Port Macquarie Base Hospital 821 525 64

Prince of Wales Hospital 982 448 46

Queanbeyan Hospital and Health Service* 53 14 26

Royal Hospital for Women 339 140 41

Royal North Shore Hospital 983 501 51

Royal Prince Alfred Hospital 136 54 40

Shoalhaven District Memorial Hospital 685 407 59

South East Regional Hospital* 30 16 53

St George Hospital 974 422 43


Hospital Mailings (in scope) Total respondents

Response rate (%)

St Vincent's Hospital Sydney 963 349 36

Sutherland Hospital 371 161 43

Sydney Adventist Private Hospital 532 318 60

Tamworth Hospital 541 272 50

The Tweed Hospital 659 311 47

Westmead Hospital 989 448 45

Wollongong Hospital 918 533 58

Wyong Hospital 337 179 53

Young Health Service* 40 26 65

*Facilities with less than 30 responses cannot be reported for data quality and confidentiality reasons.

Weighting of data

The NSW Patient Survey Program’s protocol is to ‘weight’ data, when possible, to account for differences

(bias) in the probability of sampling and the likelihood of different patient groups to respond. Weighting

makes the results more representative of the overall patient population, so the data are more useful for the

purposes of decision-making and service improvement.

The Outpatient Cancer Clinics Survey 2017 results were weighted at the hospital level to ensure the results

at LHD and NSW levels were representative of the differing volumes of eligible patients in each facility.

Different hospitals have different mixes of clinical services and demographic distribution. These should be

taken into account when comparing results from different hospitals. Appendix 4 provides details of

proportions of patients by Tier 2 clinic classification at each of the hospitals included in the survey.

Supplementary Data Tables provide detail regarding social, demographic and health status differences in

patients seen at different hospitals.

Demographic characteristics of respondents to Outpatient Cancer Clinics Survey 2017

The aim of weighting is to ensure that the distribution of the weighted sample represents the eligible

population appropriately for any variables used in the weighting. As weighting was only undertaken at the

facility level, representativeness within facilities, for instance by age group or Tier 2 are not assured. Table 5

presents the percentage of patients by LHD, Tier 2 outpatient clinic service type, age and sex at each stage

of the survey. The four columns with data are:

1) percentage in sampling frame – the percentage of patients in each category in the dataset of eligible

patients used to generate the sample (NAP extract, November 2017)

2) percentage in sample mailed – the percentage of patients in each category provided by the Ministry to

Ipsos for mailing

3) percentage of respondents (unweighted) – the raw/unadjusted percentage of respondents

4) percentage of respondents (weighted) – the weighted percentage of respondents in the final data

contributing to reported results.


Table 5: Demographic characteristics of patients and respondents, Outpatient Cancer Clinics Survey 2017 Demographic variable

Sub-group % in sampling

frame

% in sample mailed

% in respondents (unweighted)

% in respondents (weighted)

LHD Central Coast LHD 4 6 6 4

Far West LHD 0 0 0 0

Hunter New England LHD 15 10 11 13

Illawarra Shoalhaven LHD 6 7 9 5

Murrumbidgee LHD 0 1 1 0

Mid North Coast LHD 11 8 9 6

Nepean Blue Mountains LHD 5 4 4 5

Northern NSW LHD 3 5 5 4

Northern Sydney LHD 9 5 5 5

Northern Sydney LHD - Private 0 2 3 2

South Eastern Sydney LHD 10 12 10 11

Southern NSW LHD 1 2 2 2

St Vincent's Health Network 2 4 3 4

South Western Sydney LHD 10 11 10 10

Sydney LHD 1 5 4 3

Sydney LHD - Private 5 4 4 8

Western NSW LHD 3 6 6 4

Western Sydney LHD 14 8 8 14

Tier 2 Outpatient Clinic Service

Medical oncology (treatment) – 10.11 16 15 16 13

Radiation oncology (treatment) – 10.12 13 3 3 2

Radiation therapy – simulation and planning – 10.2 11 2 2 1

Gynaecology oncology - 20.39 5 3 2 3

Medical oncology (consultation) – 20.42 16 40 38 41

Radiation oncology (consultation) – 20.43 13 16 18 20

Oncology – 40.52 14 9 9 8

Other 12 13 12 11

Age stratum 18-34 # 5 2 2

35-54 # 19 12 12

55-74 # 51 55 55

75+ # 25 32 30

Gender Female # 56 54 55

Male # 44 46 45

# Sample summaries provided by the Ministry are summarised only by strata variables. As sex and age group were not strata variables for the Outpatient Cancer Clinics Survey 2017, this information is not available.


Reporting

Confidentiality

BHI does not receive any confidential patient information and only publishes aggregated data and statistics.

Any question must include a minimum of 30 respondents at reporting level (hospital or LHD or NSW) for it to

be reported to ensure there are enough respondents for reliable estimates to be calculated. This also

ensures that confidentiality and privacy are protected.

The following hospitals have been suppressed for public reporting of the Outpatient Cancer Clinics Survey

2017 because they have fewer than 30 respondents., Respondents’ results, however, will still contribute to

their respective LHD and to the NSW results:

Moree Hospital

Young Health Service

Muswellbrook Hospital

Goulburn Community Health Service

Cooma Hospital and Health Service

Broken Hill Health Service (as Broken Hill Health Service is the only facility included in Far West

LHD, no results are reported at the LHD level)

South East Regional Hospital

Queanbeyan Hospital and Health Service

Cowra Health Service

Lachlan Health Service – Parkes

Auburn Hospital.

Currently there is no suppression for facilities or LHDs with low response rates, but caution is advised if the

response rate is lower than 30%. For the Outpatient Cancer Clinics Survey 2017, all reportable hospitals had

a response rate of at least 30%. The 2017 overall Outpatient Cancer Clinics Survey 2017 response rate was

49%.

Reporting of private facilities

Chris O’Brien Lifehouse and Sydney Adventist Hospital are private facilities that are contracted to provide

services for some public patients and therefore are included in this survey and reported at the hospital level.

These facilities differ in administrative and organisational arrangements from public hospitals. Although they

are contracted to provide services for some public patients, they are not under the management of the LHD

in which they are located. Therefore, caution is advised when comparing results from Chris O’Brien

Lifehouse or Sydney Adventist Hospital to public hospitals in the survey. These hospitals are not included in

LHD-level results, but are included in the overall NSW results.

Statistical analysis

Analysis was undertaken in SAS V9.4 with the SURVEYFREQ procedure, using a finite population correction

factor and the Copper Pearson adjustment for confidence interval calculation. Hospital was included as a

strata variable. Scored questions were analysed using the SURVEYMEANS procedure with finite population

correction and the same strata variables as used in the SURVEYFREQ procedure.


Results were generated for each question in the survey at the NSW, LHD and hospital level. In addition,

results were reported on the following:

age group

sex

country of birth

highest level of education

language spoken at home

longstanding health conditions

quintile of socioeconomic disadvantage

rurality of hospital

rurality of patient residence.

Unless otherwise specified, missing responses and those who responded ‘don’t know/can’t remember’ to

questions were excluded from analysis. The exception is when the ‘don’t know/can’t remember’ response

was used for a question that asked about a third party (e.g. if family had enough opportunity to talk to the

doctor) or when the percentage responding with this option was over 10%. When reporting on questions that

are used to filter respondents through the questionnaire rather than asking about hospital performance, the

‘don’t know/can’t remember’ option and missing responses were also reported. Appendix 2 presents the

rates of missing or ‘don’t know’ responses for the Outpatient Cancer Clinics Survey 2017.

The BHI document, Guide to Interpreting Differences (bhi.nsw.gov.au/nsw_patient_survey_program)

explains the comparison of results. BHI conducts testing to identify results that are statistically different (i.e.

not due to chance). Sometimes, hospitals and LHDs are not identified as significantly different even though

they have a lower result than another hospital that is marked as being significantly worse. This is often due

to the number of patients – hospitals with more respondents allow us to more accurately assess whether

results are truly (statistically) different. In addition, some differences in results between facilities may be due

to differences in the demographic profile of patients attending those facilities. BHI is currently developing

methods to standardise survey results in order to account for differences in patient mix and to optimise direct

comparisons.

ESAS and CASE-Cancer

The Outpatient Cancer Clinics Survey 2017 questionnaire also includes two validated question sets that are

used internationally to assess cancer symptoms and patient attitudes. The Edmonton Symptom Assessment

System (ESAS1) was developed in Canada and is one of the most common tools used for patient reporting

of cancer symptom severity. The tool asks patients to rate nine common cancer related symptoms on a 10

point rating scale, with zero meaning the symptom is not being experienced (e.g. ‘no pain’) and 10 being the

worst possible severity. The Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer2)

asks 12 questions that can be used to construct three dimensions about the patient’s self-efficacy and

attitude:

maintaining a positive attitude

understanding and participating in care

1 Bruera E, et al (1991) The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. Journal of Palliative Care 7: 6–9 2 Wolf MS, et al (2005) Development and validation of the Communication and Attitudinal Self-Efficacy scale for cancer (CASE-cancer). Patient Education and Counseling 57(3): 333-341

http://bhi.nsw.gov.au/__data/assets/pdf_file/0006/248055/AAPS_Guide_to_interpreting_differences_Nov14.pdf



seeking and obtaining information.

For both measures, respondents were asked to rate their symptoms and attitudes at the time of completing

the questionnaire as opposed to thinking back to their clinic visit in November 2017. Because of the time lag

between the clinic visit and completing the questionnaire, and not knowing what might have happened to the

patient during that time, these measures do not necessarily reflect the performance of a hospital. Therefore,

the results are not reported by BHI as measures for hospital performance.

Determination of statistical significance at 0% and 100%

Confidence intervals around results that are universally positive or negative are not created by the

SURVEYFREQ procedure with the specifications described above. Therefore, it is not possible to determine

whether such a result is significantly different from the NSW result using overlapping 95% confidence

intervals. BHI is exploring alternative methods for comparison. However, as an interim method, BHI will

report results as significantly higher than NSW if the next lowest value, at that level of analysis, is

significantly higher than NSW. For example, at the hospital level, if Hospital A has a result of 100% and the

next highest result for the same question is 99% and significantly higher than the NSW result, then the result

for Hospital A will be inferred as significantly higher than the NSW result. Results of 0% are treated similarly.

Calculation of percentages

The result (percentage) for each response option in the questionnaire is determined using the following

method:

Numerator – the (weighted) number of survey respondents who selected a specific response option

to a certain question, minus exclusions.

Denominator – the (weighted) number of survey respondents who selected any of the response

options to a certain question, minus exclusions.

Calculation – the numerator/denominator x 100.

The results are weighted for most questions. They are not weighted for questions relating to demographics or self-reported health status.

In some cases, the results from several responses are combined to form a ‘derived measure’, as indicated in

the reporting. For information about how these measures are developed, please see Appendix 3.


Appendix 1: Facilities included in the Outpatient Cancer Clinics Survey 2017 sampling frame

Appendix Table 1: Eligible patients, sampled patients and proportion sampled by hospital, Outpatient Cancer Clinics Survey 2017

Hospital name Total eligible

patients Total sampled

Percentage sampled

Armidale Hospital 238 238 100%

Auburn Hospital 39 39 100%

Bankstown-Lidcombe Hospital 575 575 100%

Bathurst Health Service 299 299 100%

Bega Valley Community Health 83 83 100%

Blacktown Hospital 939 939 100%

Bourke Street Health Service 114 114 100%

Broken Hill Health Service 55 55 100%

Calvary Mater Newcastle 3,093 1,000 32%

Campbelltown Hospital 1,199 1,000 83%

Chris O'Brien Lifehouse 2,576 1,000 39%

Coffs Harbour Health Campus 1,136 1,000 88%

Concord Repatriation General Hospital 922 922 100%

Cooma Hospital and Health Service 39 39 100%

Cowra Health Service 26 26 100%

Dubbo Base Hospital 371 371 100%

Eurobodalla Community Health 169 169 100%

Gosford Hospital 1,015 1,000 99%

Goulburn Community Health Service 39 39 100%

Grafton Base Hospital 133 133 100%

Griffith Base Hospital 80 80 100%

John Hunter Hospital 175 175 100%

Lachlan Health Service - Parkes 23 23 100%

Lismore Base Hospital 417 417 100%


Liverpool Hospital 1,643 1,000 61%

Manly Hospital 109 109 100%

Manning Hospital 301 301 100%

Milton Ulladulla Hospital 52 52 100%

Moree Hospital 75 75 100%

Muswellbrook Hospital 50 50 100%

Nepean Hospital 1,716 1,000 58%

Orange Health Service 691 691 100%

Port Macquarie Base Hospital 855 855 100%

Prince of Wales Hospital 1,532 1,000 65%

Queanbeyan Hospital and Health Service 57 57 100%

Royal Hospital for Women 344 344 100%

Royal North Shore Hospital 1,480 1,000 68%

Royal Prince Alfred Hospital 137 137 100%

Shoalhaven District Memorial Hospital 708 708 100%

South East Regional Hospital 31 31 100%

St George Hospital 1,582 1,000 63%

St Vincent's Hospital Sydney 1,410 1,000 71%

Sutherland Hospital 383 383 100%

Sydney Adventist Private Hospital 550 550 100%

Tamworth Hospital 564 564 100%

The Tweed Hospital 677 677 100%

Westmead Hospital 3,770 1,000 27%

Wollongong Hospital 948 948 100%

Wyong Hospital 348 348 100%

Young Health Service 41 41 100%

NSW total 17,701 12,323 70%


Appendix 2: Missing and ‘don’t know’ responses

Appendix Table 2: Proportion of ‘don’t know’ and missing responses, by question, Outpatient Cancer Clinics Survey 2017

Question number Question text

Missing %

Don't know %

Missing + Don't know %*

1 What was the purpose of this visit? 3.4 - 3.4

2 How long did it take you to travel to the clinic for this appointment? 2.6 0.3 2.9

3 Did you need parking for your clinic visit? 4.2 - 4.2

4 Did you have any of the following issues with parking during this visit? 5.4 - 5.4

5 Were the reception staff polite and courteous? 0.8 - 0.8

6 How long after the scheduled appointment time did your appointment actually start?

2.6 2.4 5.0

7 Were you told how long you had to wait [for appointment to start]? 3.5 - 3.5

8 How comfortable was the waiting area? 0.8 - 0.8

9 How comfortable was the treatment area? 1.2 - 1.2

10 How clean was the treatment area? 0.6 - 0.6

11 Who did you see during this visit? 1.5 - 1.5

12 Did you have enough time to discuss your health issue with the health professionals you saw?

1.3 - 1.3

13 Did the health professionals explain things in a way you could understand?

1.6 - 1.6

14 During this visit, did the health professionals know enough about your medical history?

1.4 - 1.4

15 How would you rate how well the health professionals worked together?

1.2 - 1.2

16 Did you see health professionals wash their hands, or use hand gel to clean their hands, before touching you?

1.6 8.4 9.9

17 Did you have worries or fears about your condition or treatment? 2.1 - 2.1

18 Did a health professional discuss your worries or fears with you? 3.0 - 3.0

19 Did you have confidence and trust in the health professionals? 1.6 - 1.6

20 Were the health professionals kind and caring towards you? 1.6 - 1.6

21 Overall, how would you rate the health professionals who treated you? 1.7 - 1.7

22 When making decisions about your treatment, did a health professional at the clinic inform you about different treatment options?

2.7 - 2.7

23 Did a health professional at the clinic tell you about the risks and benefits of the treatment options?

1.8 - 1.8

24 Were you involved, as much as you wanted to be, in decisions about your care and treatment?

2 - 2.0

25 Did a health professional at the clinic explain the next steps of your care and treatment in a way you could understand?

2.9 - 2.9

26 Did you ever receive conflicting information about your condition or treatment from the health professionals?

2.8 - 2.8

27 Do you have a written care plan for your current or ongoing care? 3.9 5.9 9.7

28 Were you asked about your preferences for care and treatment when developing this plan?

4.7 12.2 16.8



Missing %

Don't know %


29 At your November visit, did the health professionals review your care plan with you?

4.1 8.7 12.9

30 Did you receive any treatment during this visit? (e.g. chemotherapy, radiotherapy, surgery or other treatments)

2.3 - 2.3

31 Did a health professional at the clinic explain what would be done during your treatment in a way you could understand?

4.6 - 4.6

32 Did a health professional at the clinic tell you about possible side effects of your treatment?

5.3 - 5.3

33 Were you given enough information about how to manage the side effects of your treatment?

5.9 - 5.9

34 During this visit, were you given, or prescribed, any new medication to take at home?

2.6 - 2.6

35 Did a health professional at the clinic explain the purpose of this medication in a way you could understand?

2.4 - 2.4

36 Did a health professional at the clinic tell you about side effects of this medication to watch for?

3.1 - 3.1

37 Were you told who to contact if you were worried about your condition or treatment after you left the clinic?

2.6 2.8 5.4

38 Did a health professional at the clinic give your family or someone close to you enough information to help care for you at home?

3.0 1.5 4.5

39 Were you treated with respect and dignity while you were at the clinic? 1.1 - 1.1

40 Were you given enough privacy when being examined or treated? 2.1 - 2.1

41 Were you given enough privacy when discussing your condition or treatment?

2 - 2

42 Were you ever treated unfairly for any of the reasons below? 4.9 - 4.9

43 Were your cultural or religious beliefs respected by the clinic staff? 3.3 - 3.3

44 During your visit or soon afterwards, did you experience any of the following complications or problems?

4.2 - 4.2

45 Was the impact of this complication or problem …? 3.6 - 3.6

46 In your opinion, were the health professionals open with you about this complication or problem?

3.5 - 3.5

47 In the past three months, have you gone to an emergency department because of complications related to the care you received?

2.5 0.7 3.3

48 At the time of your clinic visit, how often were you smoking cigarettes? 1.6 - 1.6

49 Has a staff member at this clinic done any of the following in the past year?

28.7 19.3 48

50 Overall, how would you rate the care you received in the clinic? 1.1 - 1.1

51 If asked about your clinic experience by friends and family, how would you respond?

1.5 - 1.5

52 How well organised was the care you received in the clinic? 1.7 - 1.7

53 Was there any time when the health professionals needed access to your health records and they were not available?

1.9 14.5 16.4

54 [At this cancer clinic over the past six months] How much were your out-of-pocket expenses for medication related to these visits? Out-of-pocket expenses are costs that the patient does not get back from Medicare or a private health fund.

2.8 4.4 7.2

55 [At this cancer clinic over the past six months] How much were your out-of-pocket expenses for consultations, tests, surgery or treatment related to these visits (excluding medication)? Out-of-pocket expenses are costs that the patient does not get back from Medicare or a private health fund.

3.0 5.3 8.4

56 [At this cancer clinic over the past six months] How much were your out-of-pocket expenses for other costs related to these visits

2.6 3.7 6.3



Missing %

Don't know %


(e.g. travel, petrol, parking, accommodation)? Out-of-pocket expenses are costs that the patient does not get back from Medicare or a private health fund.

57 Did you attend this clinic because you have or have had cancer? 2.4 - 2.4

58 Is this the first time you have had cancer? 5.1 - 5.1

59 What type of cancer were you receiving care for at this clinic? 8.8 - 8.8

60 Which of the following statements best describes how well you are able to carry out ordinary tasks and daily activities? Over the past month I would generally rate my activity as...

4.0 - 4.0

61 How has your current cancer responded to treatment? 8.3 - 8.3

62 How long has it been since you first received treatment for this cancer? 1.4 0.6 1.9

63 In the past three months, what treatment have you received for your cancer?

3.8 - 3.8

66 What year were you born? 1.9 - 1.9

67 What is your gender? 1.5 - 1.5

68 What is the highest level of education you have completed? 2.5 - 2.5

69 Language mainly spoken at home 1.6 - 1.6

70 Did you need, or would you have liked, to use an interpreter at any stage while you were at the clinic?

1.7 - 1.7

71 Did the hospital provide an interpreter when you needed one? 0.9 - 0.9

72 Aboriginal and/or Torres Strait Islander 3.0 - 3.0

73 Did you see an Aboriginal Health Worker during your November visit to the clinic?

2.7 2.7 5.5

74 Which, if any, of the following longstanding conditions do you have (including age related conditions)?

4.9 - 4.9

75 Does this condition(s) cause you difficulties with your day-to-day activities?

3.1 - 3.1

76 Are you a participant of the National Disability Insurance Scheme (NDIS)?

3.6 7.7 11.4

77 Who completed this survey? 2.1 - 2.1

78 Do you give permission for the Bureau of Health Information to link your answers from this survey to health records related to you (the patient)?

10.5 - 10.5

64 Rating of cancer symptom severity: Pain 5.8 - 5.8

64 Rating of cancer symptom severity: Tiredness 6.4 - 6.4

64 Rating of cancer symptom severity: Nausea 6.2 - 6.2

64 Rating of cancer symptom severity: Depression 6.3 - 6.3

64 Rating of cancer symptom severity: Anxiety 6.6 - 6.6

64 Rating of cancer symptom severity: Drowsiness 6.8 - 6.8

64 Rating of cancer symptom severity: Loss of appetite 6.9 - 6.9

64 Rating of cancer symptom severity: Wellbeing 7.5 - 7.5

64 Rating of cancer symptom severity: Shortness of breath 6.2 - 6.2

65 I know that I will be able to deal with any unexpected health problems 9.3 - 9.3

65 I am confident in my ability to understand written information about cancer

8 - 8

65 I am confident in my ability to understand my doctor's instructions 7.2 - 7.2

65 It is easy for me to actively participate in decisions about my treatment 8.1 - 8.1

65 I won't let cancer get me down 7.4 - 7.4



Missing %

Don't know %


65 It is easy for me to keep a positive attitude 7.1 - 7.1

65 It is easy for me to maintain a sense of humour 7.2 - 7.2

65 I am confident that I can control my negative feelings about cancer 7.7 - 7.7

65 If I don't understand something, it is easy for me to ask for help 7.2 - 7.2

65 It is easy for me to ask nurses questions 7.9 - 7.9

65 It is easy for me to ask my doctor questions 6.6 - 6.6

65 It is easy for me to get information about cancer 7.3 - 7.3

* Percentages for this column may not equal the sum of the ‘missing %’ and ‘Don’t know %’ columns because they were calculated using

unrounded figures.

# For respondents who did not answer these questions, information about age and sex were substituted with age and sex fields from

administrative data (from EDWARD Non-admitted Patient (NAP) Activity Data Mart).


Appendix 3: Derived measures

Definition

Derived measures are those for which results are calculated indirectly from respondents’ answers to a survey

question. These tend to be from questions that contain a ‘not applicable’ type response option and are used

to gather information about the array of patients’ needs.

Derived measures involve the grouping together of more than one response option to a question. The derived

measure 'Quintile of Disadvantage' is an exception to this rule (for more information on this, refer to this data

dictionary document on the BHI website at bhi.nsw.gov.au/nsw_patient_survey_program).

Statistical methods

Results are expressed as the percentage of respondents who chose a specific response option or options for

a question. The reported percentage is calculated as the numerator divided by the denominator (defined earlier

in this Technical Supplement).

Results are weighted as described in this report.

Inclusions

The following questions and responses were used in the construction of the derived measures. Appendix Table 3: Derived measures, Outpatient Cancer Clinics Survey 2017

Derived Measure Original Question Derived Measure Categories

Original Question Responses

Visit included chemotherapy, immunotherapy, radiotherapy, transfusion, surgical procedure

Q1. What was the purpose of this visit?

To receive treatment

Chemotherapy

Radiotherapy

Immunotherapy or hormone therapy

Transfusion

Surgical procedure

Other purpose of visit

Have tests, X-rays or scans

Receive test, X-ray or scan results

Medical diagnosis or advice

Follow-up after surgery

Treatment review

Regular check-up/long-term follow-up





Other reason

Issues with parking Q4. Did you have any of the following issues with parking during this visit?

Had issues with parking

No car park at the clinic

The car park was full

Too few disabled parking spaces

Expensive parking fees

Had to walk a long way from the car park

Didn't have issues with parking

None of these issues

Saw multiple health professionals

Q15. How would you rate how well the health professionals worked together?

Saw 2+ health professionals

Very good

Good

Neither good nor poor

Poor

Very poor

Saw 1 health professional

Not applicable – only saw one

Be involved in decisions about care and treatment

Q24. Were you involved, as much as you wanted to be, in decisions about your care and treatment?

Were involved Yes, definitely

Yes, to some extent

No

Were not involved

I did not want or need to be involved

Do you have a written care plan for your current or ongoing care?

Q27. Do you have a written care plan for your current or ongoing care?

Needed a written care plan

Yes

No

Did not need a written care plan

I do not need one

Don't know/can't remember


Treated unfairly Q42. Were you ever treated unfairly for any of the reasons below?

Treated unfairly

Age

Sex

Aboriginal background

Ethnic background

Religion

Sexual orientation

Disability

Marital status

Something else

Not treated unfairly

I was not treated unfairly

Had religious or cultural beliefs to consider

Q43. Were your cultural or religious beliefs respected by the clinic staff?

Had beliefs to consider

Yes, always

Yes, sometimes

No, my beliefs were not respected

Beliefs not an issue

My beliefs were not an issue




During your visit or soon afterwards, did you experience any of the following complications or problems?

Q44. During your visit or soon afterwards, did you experience any of the following complications or problems? (derived measure)

Had complication

An infection

Uncontrolled bleeding

An unexpected negative reaction to medication

Complications as a result of tests or procedures

Severe pain due to the treatment

Lymphoedema (chronic excessive swelling)

Severe anxiety or worry

Any other complication or problem

None reported None

In your opinion, were the health professionals open with you about this complication or problem?

Q46. In your opinion, were the health professionals open with you about this complication or problem?

Occurred in clinic

Yes, completely

Yes, to some extent

No

Occurred after left

Not applicable, as it happened after I left

Smoked at time of visit Q48. At the time of your clinic visit, how often were you smoking cigarettes?

Yes Some days

Every day

No I've never smoked

Not at all, I've quit smoking

Staff have advised to quit smoking, and/or offered to refer you to Quitline or similar, offered NRT or provided other help to quit smoking

Q49. Has a staff member at this clinic done any of the following in the past year?

Yes Advised you to quit smoking

Offered to refer you to the Quitline or a smoking support service/professional

Offered you nicotine replacement therapy (e.g. patches, gum)

Provided other help to quit smoking

No Asked if you smoke



Currently undergoing active treatment

Q61. How has your current cancer responded to treatment?

Active treatment phase

I am in the course of treatment and I can't tell yet how my cancer has responded

My cancer is being treated again because it has not responded fully to treatment

Treatment has not yet started for this cancer




Non-active treatment phase

The treatment has been effective and I have no signs or symptoms of cancer

I have finished the course of treatment but my cancer is still present

I am not in active treatment but I am on 'Watch and Wait'

My cancer has not been treated at all

In the past three months, did you receive treatment for your cancer?

Q63. In the past three months, what treatment have you received for your cancer?

Yes Radiotherapy

Chemotherapy (including hormone therapy, immunotherapy and targeted drug therapy)

Surgery

Other treatment (e.g. bone marrow transplant)

No I have not received treatment in the past three months

Exclusions

For derived measures, the following responses are excluded:

‘Don’t know/can’t remember’ or similar non-committal response (with the exception of questions where the

rate of this response was over 10% and questions that refer to the experience of a third party such as a

family/carer)

Invalid (i.e. respondent was meant to skip a question but did not)

Missing (with the exception of questions that allow multiple responses or a ‘none of these’ option, to which

the missing responses are combined to create a ‘none reported’ variable).


Appendix 4: Tier 2 composition of clinic, by facility All clinics are assigned to a single Tier 2 clinic type for the purposes of funding. In facilities where sampling was undertaken, no attempt was made to ensure

consistency of sampling across the various clinics. For text definition of Tier 2 categories see Table 1.

Appendix Table 4.Tier 2 composition of eligible population and survey respondent group, by facility, Outpatient Cancer Clinics Survey 2017 Population Respondents

Unweighted % Other 10.11 10.12 10.20 20.39 20.42 20.43 40.52 Other 10.11 10.12 10.20 20.39 20.42 20.43 40.52

Armidale Hospital 0 30 0 0 0 69 0 1 0 33 0 0 0 67 0 0

Auburn Hospital 0 0 0 0 0 100 0 0 0 0 0 0 0 100 0 0

Bankstown-Lidcombe Hospital

1 8 0 0 1 78 7 5 0 5 0 0 0 78 10 6

Bathurst Health Service 0 21 0 0 0 49 10 20 0 19 0 0 0 58 6 17

Bega Valley Community Health

28 63 0 0 0 0 0 10 34 64 0 0 0 0 0 2

Blacktown Hospital 2 32 3 1 0 33 17 12 1 34 5 2 0 28 18 11

Bourke Street Health Service

0 15 0 0 0 0 0 85 0 14 0 0 0 0 0 86

Broken Hill Health Service

2 62 0 0 0 7 5 24 0 59 0 0 0 0 0 41

Calvary Mater Newcastle 0 13 6 1 0 48 19 12 0 5 1 0 0 27 51 17

Campbelltown Hospital 17 3 20 11 0 49 0 0 14 4 28 8 0 47 0 0

Chris O'Brien Lifehouse 0 4 5 4 18 51 18 0 0 8 0 0 15 49 28 0

Coffs Harbour Health Campus

10 20 4 3 0 41 13 9 8 22 5 4 0 39 15 7

Concord Repatriation General Hospital

55 0 0 0 0 45 0 0 55 0 0 0 0 45 0 0

Cooma Hospital and Health Service

33 56 0 0 0 0 0 10 18 76 0 0 0 0 0 6

Cowra Health Service 0 100 0 0 0 0 0 0 0 100 0 0 0 0 0 0

Dubbo Base Hospital 0 42 0 0 0 34 12 13 0 40 0 0 0 35 13 12

Eurobodalla Community Health

14 34 0 0 0 20 0 33 13 35 0 0 0 20 0 33

Gosford Hospital 10 13 6 0 2 41 24 5 9 13 7 0 1 41 25 4

Goulburn Community Health Service

62 0 0 0 0 0 0 38 75 0 0 0 0 0 0 25


Grafton Base Hospital 0 0 0 0 0 79 14 7 0 0 0 0 0 84 13 4

Griffith Base Hospital 0 78 0 0 0 23 0 0 0 82 0 0 0 18 0 0

John Hunter Hospital 0 0 0 0 46 8 0 46 0 0 0 0 56 4 0 40

Lachlan Health Service - Parkes

0 100 0 0 0 0 0 0 0 100 0 0 0 0 0 0

Lismore Base Hospital 0 37 0 1 0 0 58 4 0 31 0 0 0 0 65 4

Liverpool Hospital 3 34 0 16 8 22 17 0 2 26 0 4 7 33 27 0

Manly Hospital 0 49 0 0 0 51 0 0 0 50 0 0 0 50 0 0

Manning Hospital 1 16 0 0 0 42 0 41 1 14 0 0 0 50 0 35

Milton Ulladulla Hospital 63 37 0 0 0 0 0 0 65 35 0 0 0 0 0 0

Moree Hospital 5 37 0 0 0 13 0 44 4 41 0 0 0 11 0 44

Muswellbrook Hospital 0 74 0 0 0 20 0 6 0 76 0 0 0 24 0 0

Nepean Hospital 9 6 0 4 0 65 15 1 5 11 0 0 0 62 20 1

Orange Health Service 0 15 0 6 0 37 14 28 0 13 0 7 0 37 15 27

Port Macquarie Base Hospital

8 29 7 6 0 6 25 20 8 29 6 5 0 6 27 18

Prince of Wales Hospital 35 2 0 1 0 14 18 29 32 1 0 0 0 19 32 15

Queanbeyan Hospital and Health Service

35 0 0 0 0 0 0 65 43 0 0 0 0 0 0 57

Royal Hospital for Women

55 0 0 0 44 0 0 0 40 0 0 0 59 0 0 1

Royal North Shore Hospital

18 23 5 6 3 39 3 3 16 19 3 3 2 52 3 2

Royal Prince Alfred Hospital

7 0 0 0 0 93 0 0 4 0 0 0 0 96 0 0

Shoalhaven District Memorial Hospital

37 10 3 2 0 23 17 8 34 10 3 1 0 24 21 7

Outpatient Cancer Clinics Survey 2017 - Bureau of Health ... · 5) Clinics in Sydney Adventist Private Hospital were identified by the management of the hospital, and a data extract

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