Cancer treatment and services: Patient experience of cancer treatment

Patient‑reported measures

Enabling people to give feedback about their cancer experience can lead to more personalised care being provided. It can improve the quality of our health system and help focus on aspects of concern to patients.

The Cancer Institute NSW has partnered with the NSW Bureau of Health Information to report on the experiences of people with cancer in NSW. People who attended outpatient cancer clinics across NSW in November 2018 were surveyed, and asked for feedback about their experiences and outcomes of care. The psychological wellbeing of patients was also assessed.

People attend outpatient cancer clinics for a range of reasons. The results shown look at those people who reported they had cancer and were being treated for cancer at the time.

Overall key findings:

In November 2018, out of 24,097 patient experience surveys emailed to 44 public hospitals, there were 11,378 overall responses. From these responses:

  • 96% of people attending outpatient cancer clinics in NSW public hospitals felt they were ‘always’ treated with respect and dignity.
  • 85% reported a ‘very good’ overall rating of care received.
  • 70% of relevant people surveyed were advised by a health professional at an outpatient cancer clinic to quit smoking.

Function* of patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by local health district (LHD) and specialty health network (ranked), November 2018

Key findings:

  • In November 2018, 80% of surveyed people in an active phase of treatment in an outpatient cancer clinic in NSW public hospitals reported they were either ‘able to be up and about with fairly normal activities’ (59%) or ‘able to carry out normal activities with no limitations’ (21%).
  • The percentage of people who were either ‘able to be up and about with fairly normal activities’ or ‘able to carry out normal activities with no limitations’ ranged from 74% to 88% across LHDs, in November 2018.

Function* of patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by local health district (LHD) and specialty health network (ranked), November 2018

N= Number of eligible responses to question.

* How well patients were able to carry out ordinary tasks and daily activities over the past month. The categories are based on the Eastern Cooperative Oncology Group Performance Status Scale.

** Sydney LHD excludes Chris O'Brien Lifehouse.

Notes:

1. Data source: Outpatient Cancer Clinic Survey, November 2018 (pre-release data supplied by the Bureau of Health Information).

2. Hospital and LHD results were suppressed when there were fewer than 30 survey respondents. Refer to the appendix for the full list of participating hospitals.

3. Survey details (NSW): Number mailed = 24,097; Response rate = 47%.

Smoking status of patients attending an outpatient cancer clinic in NSW public hospitals, by local health district (LHD) and specialty health network (ranked), November 2018

Key findings:

  • 70% of relevant people surveyed were advised to quit smoking by a health professional at an outpatient cancer clinic in NSW public hospitals, ranging from 55% to 80% across reported LHDs, in November 2018.
  • Supporting a person to quit smoking, even at the time that they are diagnosed, can improve overall health outcomes and cancer‑specific mortality.[18]

Smoking status of patients attending an outpatient cancer clinic in NSW public hospitals, by local health district (LHD) and specialty health network (ranked), November 2018

N= Number of eligible responses to question.

* How well patients were able to carry out ordinary tasks and daily activities over the past month. The categories are based on the Eastern Cooperative Oncology Group Performance Status Scale.

** Sydney LHD excludes Chris O'Brien Lifehouse.

Notes:

1. Data source: Outpatient Cancer Clinic Survey, November 2018 (pre-release data supplied by the Bureau of Health Information).

2. Hospital and LHD results were suppressed when there were fewer than 30 survey respondents. Refer to the appendix for the full list of participating hospitals.

3. Survey details (NSW): Number mailed = 24,097; Response rate = 47%.

Self‑assessed symptom scores* for patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by hospital, local health district (LHD) and specialty health network (ranked), November 2018

Key finding:

  • The Edmonton Symptom Assessment System (ESAS) scale measures the severity of nine common symptoms that may be experienced by people with cancer.[49] Self-assessed general well-being for patients in an active phase of treatment, who attended an outpatient cancer clinic in NSW, ranged from 3.4 to 4.2, in November 2018.

Self‑assessed symptom scores* for patients in an active phase of treatment attending an outpatient cancer clinic in NSW public hospitals, by hospital, local health district (LHD) and specialty health network (ranked), November 2018

* Edmonton Symptom Assessment System (ESAS); ESAS measures respondents' rating of nine common symptoms on a 10-point numerical rating scale of severity (e.g. from 0 for 'no pain' to 10 for 'worst possible pain').

** Sydney LHD excludes Chris O'Brien Lifehouse.

Notes:

1. Data source: Outpatient Cancer Clinic Survey, November 2018 (pre-release data supplied by the Bureau of Health Information).

2. Patients who reported that they were currently in a course of treatment (Q61, responses 2 and 5) were classed as being in an active phase of treatment. For information regarding Q61, please refer to the appendices.

3. Hospital and LHD results were suppressed when there were fewer than 30 survey respondents. Refer to the appendix for the full list of participating hospitals.

4. Survey details (NSW): Number mailed = 24,097; Response rate = 47%.

Self‑efficacy scores* for patients attending an outpatient cancer clinic in NSW public hospitals, by hospital, local health district (LHD) and specialty health network (ranked), November 2018

Key findings:

  • The Communication and Attitudinal Self‑Efficacy (CASE) scale measures a patient’s confidence and ability to engage in their care.[50] On average, high scores were achieved across NSW for each category of the scale for people undergoing an active phase of cancer treatment in November 2018. This suggests outpatients had a high level of confidence regarding their cancer care.
  • Self-efficacy scores for all patients attending an outpatient cancer clinic in NSW public hospitals ranged from 7.9 to 8.2 across all LHDs, in November 2018.
  • For patients in an active phase of treatment, scores ranged from 7.6 to 8.2, across all LHDs, in Novmber 2018.

Self‑efficacy scores* for patients attending an outpatient cancer clinic in NSW public hospitals, by hospital, local health district (LHD) and specialty health network (ranked), November 2018

* Communication and Attitudinal Self-Efficacy Scale (CASE-cancer). Twelve questions are answered on a four-category response scale. These have been scored linearly and aggregated to give means for the three domains: Seek and obtain information; maintain a positive attitude; and understand and participate in care.

ᴧ Number of respondents too small for reporting.

** Sydney LHD excludes Chris O'Brien Lifehouse.

Notes:

1. Data source: Outpatient Cancer Clinic Survey, November 2018 (pre-release data supplied by the Bureau of Health Information).

2. Patients who reported that they were currently in a course of treatment (Q61, responses 2 and 5) were classed as being in an active phase of treatment. For information regarding Q61, please refer to the appendices.

3. Hospital and LHD results were suppressed when there were fewer than 30 survey respondents. Refer to the appendix for the full list of participating hospitals.

4. Survey details (NSW): Number mailed = 24,097; Response rate = 47%.

Patient‑reported responses to aspects of care for patients attending an outpatient cancer clinic in NSW (ranked), November 2018

Key findings:

  • In November 2018, almost 64% of people attending outpatient cancer clinics in NSW public hospitals felt they had their worries and fears completely discussed by a health professional.
  • 73% of people were informed about how to manage the side effects of treatment.
  • 90% of people were informed about who to contact if worried.
  • Between 22% and 56% of patients across LHDs reported being informed of a wait time when attending an outpatient clinic in NSW, in November 2018.
  • Between 79% and 95% of patients across LHDs reported a 'very good' overall rating of care received, in November 2018.

Patient‑reported responses to aspects of care for patients attending an outpatient cancer clinic in NSW (ranked), November 2018

ᴧ Number of respondents too small for reporting.

** Sydney LHD excludes Chris O'Brien Lifehouse.

Notes:

1. Data source: Outpatient Cancer Clinic Survey, November 2018 (pre-release data supplied by the Bureau of Health Information).

2.T he methodology used to determine whether results were significantly different from NSW, has changed si nce the previous Statewide report was published. Significance testing was conducted at hospital level only. Refer to the 'Technical document' in the appendices for further information.

3. Patients who reported that they were currently in a course of treatment (Q61, responses 2 and 5) were classed as being in an active phase of treatment. For information regarding Q61, please refer to the appendices.

4. Hospital and LHD results were suppressed when there were fewer than 30 survey respondents. Refer to th e appendix for the full list of participating hospitals.

5. Survey details (NSW): Number mailed = 24,097; Response rate = 47%.


Why are different time periods and dates reported?

Cancer information is collected from many different sources, so it takes time to review and analyse the data. Different pieces of information may be collected over different time periods, or reported at different times. This means not all the measures reported here have the same dates.

The information presented is the most recent available for each measure at the time this report was written.

Why are confidence intervals reported here?

Confidence intervals are included when a small sample is used to represent the overall population, because there is a chance of an error due to this scaling.

In this report, a 95% confidence interval is presented only on charts where a sample of the population is used. This interval can be thought of as a margin of error.

The larger the sample size, the smaller the confidence interval range. The smaller the sample size, the larger the confidence interval range.