CAPO Lived Experience Survey

We look forward to hearing from you. Your opinion matters.

The Canadian Association of Psychosocial Oncology (CAPO) invites individuals with lived cancer experience to participate in a short online survey that will help to inform the organization’s strategic priorities going forward.

Your participation is entirely voluntary and all survey responses will be anonymous. Aggregated responses will be shared with the CAPO Board, its members, and other stakeholders involved in CAPO’S strategic planning process.

If you are interested in participating, we ask that you complete and submit your responses by April 30, 2021. It should not take longer than 20 minutes to complete this survey.

Question Title

1. Based on your experience, please rate the overall quality of cancer care in Canada for each of the following areas of intervention on a scale of 1-5 (where 1 is poor, 3 is moderate and 5 is excellent):

	5	4	3	2	1
Prevention of Cancer	Prevention of Cancer 5	Prevention of Cancer 4	Prevention of Cancer 3	Prevention of Cancer 2	Prevention of Cancer 1
Cancer Diagnosis and Early Detection	Cancer Diagnosis and Early Detection 5	Cancer Diagnosis and Early Detection 4	Cancer Diagnosis and Early Detection 3	Cancer Diagnosis and Early Detection 2	Cancer Diagnosis and Early Detection 1
Medical Cancer Treatment including chemotherapy and radiation (excluding surgery)	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) 5	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) 4	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) 3	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) 2	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) 1
Cancer surgery	Cancer surgery 5	Cancer surgery 4	Cancer surgery 3	Cancer surgery 2	Cancer surgery 1
Psychosocial Cancer Treatment and Services	Psychosocial Cancer Treatment and Services 5	Psychosocial Cancer Treatment and Services 4	Psychosocial Cancer Treatment and Services 3	Psychosocial Cancer Treatment and Services 2	Psychosocial Cancer Treatment and Services 1
Palliative Care	Palliative Care 5	Palliative Care 4	Palliative Care 3	Palliative Care 2	Palliative Care 1

Question Title

2. In your opinion, where has the quality of cancer care either stayed generally the same, improved, or declined vs. 10 years ago?

	Improved	Stayed the same	Declined	Don't know
Prevention of Cancer	Prevention of Cancer Improved	Prevention of Cancer Stayed the same	Prevention of Cancer Declined	Prevention of Cancer Don't know
Cancer Diagnosis and Early Detection	Cancer Diagnosis and Early Detection Improved	Cancer Diagnosis and Early Detection Stayed the same	Cancer Diagnosis and Early Detection Declined	Cancer Diagnosis and Early Detection Don't know
Medical Cancer Treatment including chemotherapy and radiation (excluding surgery)	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) Improved	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) Stayed the same	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) Declined	Medical Cancer Treatment including chemotherapy and radiation (excluding surgery) Don't know
Cancer surgery	Cancer surgery Improved	Cancer surgery Stayed the same	Cancer surgery Declined	Cancer surgery Don't know
Psychosocial Cancer Treatment and Services	Psychosocial Cancer Treatment and Services Improved	Psychosocial Cancer Treatment and Services Stayed the same	Psychosocial Cancer Treatment and Services Declined	Psychosocial Cancer Treatment and Services Don't know
Palliative Care	Palliative Care Improved	Palliative Care Stayed the same	Palliative Care Declined	Palliative Care Don't know

Question Title

3. Which of the following psychosocial oncology services are you aware of? [Please select all that apply]

Mental health services (psychologist, social worker, etc.)

Physiotherapy or rehabilitation services

Spiritual care and support

Food and nutrition support

Other survivorship services

Other (please specify)

Question Title

4. Which of the following psychosocial oncology services have you accessed or are planning to access as part of your cancer wellness journey? [Please select all that apply]

Mental health services (psychologist, social worker, etc.)

Physiotherapy or rehabilitation services

Spiritual care and support

Food and nutrition support

Other survivorship services

Other (please specify)

Question Title

5. Which of the following psychosocial oncology services were offered to you by your oncologist or a member of your oncology care team? [Please select all that apply]

Mental health services (psychologist, social worker, etc.)

Physiotherapy or rehabilitation services

Spiritual care and support

Food and nutrition support

Other survivorship services

Other (please specify)

Question Title

6. In your opinion, what are the most significant challenges faced by patients in accessing psychosocial oncology services? [Please select all that apply]

Availability of services

Ability to access services

Lack of Information about services available beyond treatment of cancer

Symptoms not diagnosed/referred by family physician or cancer treatment provider

Complexity of navigating appropriate services

Coordination of services

Other (please describe)

Question Title

7. Please describe how the challenges mentioned above have impacted you as a patient.

Question Title

8. The Canadian Association of Psychosocial Oncology (CAPO) is an organization of professionals, clinicians, researchers, educators, and others dedicated to the understanding, treatment and study of the social, psychological, emotional, spiritual and quality-of-life aspects of cancer. On a scale of 1-5, rank the importance of each of the following potential focus areas for CAPO from your perspective as a patient or survivor. (1-Not important at all, 2-Minimal value to me 3-Some value to me, 4- Very important, 5-Critical)

	5	4	3	2	1
Facilitating networking and the exchange of ideas among members	Facilitating networking and the exchange of ideas among members 5	Facilitating networking and the exchange of ideas among members 4	Facilitating networking and the exchange of ideas among members 3	Facilitating networking and the exchange of ideas among members 2	Facilitating networking and the exchange of ideas among members 1
Fostering and encouraging interprofessional, inter-sectoral and political collaboration in psychosocial care and services?	Fostering and encouraging interprofessional, inter-sectoral and political collaboration in psychosocial care and services? 5	Fostering and encouraging interprofessional, inter-sectoral and political collaboration in psychosocial care and services? 4	Fostering and encouraging interprofessional, inter-sectoral and political collaboration in psychosocial care and services? 3	Fostering and encouraging interprofessional, inter-sectoral and political collaboration in psychosocial care and services? 2	Fostering and encouraging interprofessional, inter-sectoral and political collaboration in psychosocial care and services? 1
Developing standards, practice guidelines, and service integration strategies	Developing standards, practice guidelines, and service integration strategies 5	Developing standards, practice guidelines, and service integration strategies 4	Developing standards, practice guidelines, and service integration strategies 3	Developing standards, practice guidelines, and service integration strategies 2	Developing standards, practice guidelines, and service integration strategies 1
Advocating for access to psychosocial care and services	Advocating for access to psychosocial care and services 5	Advocating for access to psychosocial care and services 4	Advocating for access to psychosocial care and services 3	Advocating for access to psychosocial care and services 2	Advocating for access to psychosocial care and services 1
Promoting and encouraging excellence in psychosocial research	Promoting and encouraging excellence in psychosocial research 5	Promoting and encouraging excellence in psychosocial research 4	Promoting and encouraging excellence in psychosocial research 3	Promoting and encouraging excellence in psychosocial research 2	Promoting and encouraging excellence in psychosocial research 1
Accelerating knowledge translation and the implementation of research into standard care	Accelerating knowledge translation and the implementation of research into standard care 5	Accelerating knowledge translation and the implementation of research into standard care 4	Accelerating knowledge translation and the implementation of research into standard care 3	Accelerating knowledge translation and the implementation of research into standard care 2	Accelerating knowledge translation and the implementation of research into standard care 1
Providing and promoting educational programs and resources	Providing and promoting educational programs and resources 5	Providing and promoting educational programs and resources 4	Providing and promoting educational programs and resources 3	Providing and promoting educational programs and resources 2	Providing and promoting educational programs and resources 1

Question Title

9. If there was one thing CAPO could do that would be of greatest benefit to you, what would that be?

Question Title

10. Please list any other organizations that you have found to be helpful in your cancer journey.

Question Title

11. Please select the category that best describes the stage of your illness

Have received a cancer diagnosis but have not started treatment

In treatment

Post treatment but still experiencing direct and indirect physical or mental health issues

Post treatment and functioning well with minimal interventions

In palliative care

Question Title

12. So that we can better understand how issues and priorities differ by age, please indicate your age group as of March 31, 2021.

Under 25

25-34

35-49

50-64

65+

Prefer not to answer

Question Title

13. So that we can better understand how issues and priorities differ by gender, please indicate your gender.

Female

Male

Non-binary

Prefer not to answer

Other (please specify)

Question Title

* 1. Based on your experience, please rate the overall quality of cancer care in Canada for each of the following areas of intervention on a scale of 1-5 (where 1 is poor, 3 is moderate and 5 is excellent):

Question Title

* 2. In your opinion, where has the quality of cancer care either stayed generally the same, improved, or declined vs. 10 years ago?

Question Title

* 3. Which of the following psychosocial oncology services are you aware of? [Please select all that apply]

Question Title

* 4. Which of the following psychosocial oncology services have you accessed or are planning to access as part of your cancer wellness journey? [Please select all that apply]

Question Title

* 5. Which of the following psychosocial oncology services were offered to you by your oncologist or a member of your oncology care team? [Please select all that apply]

Question Title

* 6. In your opinion, what are the most significant challenges faced by patients in accessing psychosocial oncology services? [Please select all that apply]

Question Title

* 7. Please describe how the challenges mentioned above have impacted you as a patient.

Question Title

Question Title

* 9. If there was one thing CAPO could do that would be of greatest benefit to you, what would that be?

Question Title

* 10. Please list any other organizations that you have found to be helpful in your cancer journey.

Question Title

* 11. Please select the category that best describes the stage of your illness

Question Title

* 12. So that we can better understand how issues and priorities differ by age, please indicate your age group as of March 31, 2021.

Question Title

* 13. So that we can better understand how issues and priorities differ by gender, please indicate your gender.

1. Based on your experience, please rate the overall quality of cancer care in Canada for each of the following areas of intervention on a scale of 1-5 (where 1 is poor, 3 is moderate and 5 is excellent):

2. In your opinion, where has the quality of cancer care either stayed generally the same, improved, or declined vs. 10 years ago?

3. Which of the following psychosocial oncology services are you aware of? [Please select all that apply]

4. Which of the following psychosocial oncology services have you accessed or are planning to access as part of your cancer wellness journey? [Please select all that apply]

5. Which of the following psychosocial oncology services were offered to you by your oncologist or a member of your oncology care team? [Please select all that apply]

6. In your opinion, what are the most significant challenges faced by patients in accessing psychosocial oncology services? [Please select all that apply]

7. Please describe how the challenges mentioned above have impacted you as a patient.

9. If there was one thing CAPO could do that would be of greatest benefit to you, what would that be?

10. Please list any other organizations that you have found to be helpful in your cancer journey.

11. Please select the category that best describes the stage of your illness

12. So that we can better understand how issues and priorities differ by age, please indicate your age group as of March 31, 2021.

13. So that we can better understand how issues and priorities differ by gender, please indicate your gender.