KW seminar: Quality of life

Question 1

Cancer has a big effect on quality of life. What are general (long-term) symptoms that can occur due to cancer?

Answer 1

Changed body image, fatigue and sleep problems, cognitive problems, pain, sexuality.

Question 2

Cancer has a big effect on quality of life. What are head and neck cancer-specific (long-term) symptoms that can occur due to cancer?

Answer 2

Problems with eating, social eating, speech problems, shoulder problems etc.

Question 3

What is the definition of health-related quality of life?

Answer 3

It refers to a patient’s subjective perception of the effect on their disease and treatment on physical, psychological and social aspects of life. (But can also be defined as patient’s reported psycical, mental and social functioning).

Question 4

What is the definition of health (according to the WHO)?

Answer 4

Health is a state of complete physical, mental and social well-being and not merely the absence of disease.

Question 5

Just read, because I think you can think of these symptoms yourself

Answer 5

Ok

Question 6

Just read, because I think you can think of these symptoms yourself

Answer 6

Ok

Question 7

Patient reported outcome measures (PROMs) are questionnaires patients complete on their health and quality of life. What four categories are there?

Answer 7

Generic, disease-specific, domain-specific and symptom-specific

Question 8

What is an example of a generic PROM and for what patients are they used?

Answer 8

EQ-5D, used in cancer and diabetes patients.

Question 9

What is an example of a disease-specific PROM and for what patients are they used?

Answer 9

EORTC QLQ-C30, developed specifically for cancer patients.

Question 10

What is an example of a domain-specific PROM and for what patients are they used?

Answer 10

EORTC QLQ-H&N35, measures symptoms for a specific group of cancer.

Question 11

What is an example of a symptom-specific PROM and for what patients are they used?

Answer 11

Hospital Anxiety and Depression scale (HADS), used to measure specific symptoms.

Question 12

EQ-5D is a generic PROM designed for assessing quality of life for e.g. cancer and diabetes patients. Think of and name categories that these questions are based on.

Answer 12

Mobility, self-care, usual activities, pain/discomfort, anxiety/depression.

Question 13

EORTC QLQ-C30 is a disease specific PROM developed specifically for cancer patients. Think of questions that belong in this PROM.

Answer 13

Questions that have got to do with the general health and general symptoms cancer patients may experience.

Question 14

Why is it important that we measure health-related quality of life in cancer (4 reasons)?

Answer 14

1. To increase symptom awareness
2. To improve communication
3. To improve symptom management and HRQOL
4. To identify patients at risk for mortality and thus to improve survival

Question 15

Do you think health-related quality of life is associated with survival?

Answer 15

Yes, a high(er) physical functioning score correlates with a better survival.

Question 16

When should we measure health-related quality of life?

Answer 16

Before, during, after and at long-term follow-up (so during all phases of disease (diagnosis, treatment and follow-up))

Question 17

What is supportive care?

Answer 17

The provision of the necessary services for those living with or affected by cancer to meet their physical, emotional, social, psychological, informational, spiritual and practical needs during the diagnostic, treatment , and follow-up phases, encompassing issues of survivolship, palliative care and bereavement.

Question 18

What is selfmanagement?

Answer 18

Those tasks that individuals undertake to deal with the medical, role, and emotional management of their health conditions.

Question 19

What is eHealth?

Answer 19

Information and communications technology, especially the internet, to improve or enable health care.

Question 20

There are four intensities of intensive care. What are these?

Answer 20

1. Screening for supportive care needs and the provision of relevant information
2. Low-intensive care -> self-help interventions
3. Moderate-intensive care -> nurse-led interventions
4. High-intensive care

Question 21

What is low-intensive care?

Answer 21

Self-help interventions (many patients)

Question 22

What is moderate-intensive care?

Answer 22

Nurse-led interventions

Question 23

Level 1: Screening and monitoring

• For who?
• For what?
• Example?

Answer 23

• For who? Everyone
• For what? Screening and monitoring of HRQOL and symptoms (also providing information)
• Example? OncoQuest (designed for cancer patients for assesing their HRQOL).

Question 24

Level 2: Low-intensive supportive care

• For who?
• For what?
• Example?

Answer 24

• For who? those with low unmet needs
• For what: providing information, education and self-management interventions
• Example: in Tune without Cords

Question 25

Level 3: Moderate-intensive supportive care

• For who?
• For what?
• Example?

Answer 25

• Who? Those with unmet needs for with low-intensive care is not sufficient
• What? Interventions provided by a nurse or group interventions
• Example: speech therapy in groups

Question 26

Level 4: Intensive supportive care

• For who?
• For what?
• Example?

Answer 26

• Who? Those with unmet needs for which moderate-intensive supportive care is not sufficient
• What? intensive idividual care provided by a caregiver.
• Example: individual treatment by a speech therapist.

Question 27

What is stepped care principle? And why do we have this principle?

Answer 27

Here, low-intensive treatment is offered to the patient. In case this treatment is not sufficient more intensive treatment is provided to the patient. It is expected that this is more effective and less costly.