Background
Burden of haematological cancers
Psychosocial wellbeing of individuals with haematological cancers
Significant burden placed on support persons
Evidence-based strategies for reducing psychosocial distress
Ensuring that patients are involved in decision making
Providing tailored information
Preparing patients for potentially threatening procedures
Providing psychological therapies
The Internet is an ideal platform to provide support which aligns with the evidence base
Web-based interventions to improve psychosocial outcomes for patients and their Support Persons
Aims
Hypotheses
Method
Study design
Hospital eligibility
Patient and support person eligibility
Recruitment and consent procedure
Randomisation and blinding
Intervention
Development of web-based information tool
Development of content
Domain | Content |
---|---|
1. Introduction | 1.1 Introduction |
2. My cancer and its causes | 2.1a Acute myeloid leukaemia |
2.1b Acute lymphoblastic leukaemia | |
2.1c Burkitt’s lymphoma | |
2.1d Lymphoblastic lymphoma (B or T cell) | |
3. What are my treatment options? | 3.1 Chemotherapy |
3.1.1 What does chemotherapy involve? | |
3.1.1.1 What tests will I require before and during treatment? | |
3.1.1.2 How is chemotherapy given? | |
3.1.1.2.1 Cannula | |
3.1.1.2.2 Central lines | |
3.1.1.2.3 PICC lines | |
3.1.1.2.4 Lumbar puncture | |
3.1.1.3 How long does chemotherapy take? | |
3.1.1.4 Where will I have chemotherapy? | |
3.1.1.5 Who will be involved in my care? | |
3.1.1.6 What are the safety precautions? | |
3.1.1.7 How and when will I know if the chemotherapy has worked? | |
3.1.2 What are possible side effects? | |
3.1.2.1 Effects on the blood and immune system | |
3.1.2.1.1 Avoiding infection | |
3.1.2.2 Hair loss or scalp problems | |
3.1.2.3 Loss of appetite, nausea or vomiting | |
3.1.2.4 Constipation or diarrhoea | |
3.1.2.5 Fatigue | |
3.1.2.6 Itchy skin and other skin problems | |
3.1.2.7 Mouth sores | |
3.1.2.8 Infertility | |
3.1.2.9 When to contact your doctor | |
3.1.3 What happens after chemotherapy? | |
3.1.3.1 What happens when I go home? | |
3.1.3.2 What are the chances of the cancer coming back? | |
3.1.3.3 When should I seek medical assistance? | |
3.2 Bone marrow transplant | |
3.2.1 What is bone marrow? | |
3.2.2 What is a bone marrow transplant? | |
3.2.3 Is a bone marrow transplant right for me? | |
3.2.4 Types of bone marrow transplants | |
3.3 Palliative care | |
3.3.1 What does palliative care involve? | |
3.3.1.1 How long does palliative care take? | |
3.3.1.2 Where would I have palliative care? | |
3.3.1.3 Who will be involved in my care? | |
3.3.1.4 Can my carer access respite care? | |
3.3.2 Symptom management | |
3.4 No treatment | |
3.5 Clinical trials | |
3.5.1 What is a clinical trial? | |
3.6 Getting a second opinion | |
4. Complementary and alternative medicine (CAM) | 4.1 What is CAM? |
4.1.1 What is scientific evidence? | |
4.1.2 Complementary therapies | |
4.1.3 Alternative therapies | |
4.2 Why do some people with cancer choose CAM? | |
4.3 What types of CAM are there? | |
4.4 Important safety information | |
4.5 What should I ask my doctor about CAM? | |
4.6 How do I decide? | |
4.7 Costs | |
4.8 Finding a complementary therapist | |
4.8.1 Professional associations | |
4.9 Talking to complementary therapists | |
5. Impact of cancer and treatment on my life | 5.1 Family |
5.2 Work | |
5.2.1 Taking time off work | |
5.2.2 Financial issues | |
5.3 Education/Studies | |
5.4 Partner relationships | |
5.5 Social life | |
5.6 Body image and sexuality | |
5.7 Diet | |
5.7.1 Coping with eating problems and side effects | |
5.7.2 How to gain weight | |
5.7.3 Access to a dietitian | |
5.7.4 Recipes and snacks | |
5.8 Exercise | |
6. What support is available? | 6.1 Emotional support |
6.2 Accommodation | |
6.3 Practical support | |
6.4 Transport/parking | |
6.5 Financial assistance | |
6.6 Support for the family | |
6.7 Access to wigs | |
7. Where can I get further information? | 7.1 Websites |
7.2 Telephone helplines | |
7.3 Clinical cancer nurse | |
8. Discussion Forum | 8. Discussion Forum |