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Improving patient information

Facilitating informed decision-making in haemato-oncology

Blood disorders are complicated diseases that can be treated in different ways.  People with chronic diseases might not need treatment, but may be monitored in the haematology clinic (known as “watch and wait”).  This can be worrying for patients (and their families), as they don’t know how long it will be before treatment is needed, if ever.  Other treatments include chemotherapy (usually given over several months, and repeated if the disease returns), radiotherapy and/or stem cell transplant.  Each of these approaches can have side effects that may lead to hospital admission and affect quality of life.

People with blood disorders tell us they often find it difficult to make treatment decisions and that there is not lot of information available to help them.  Issues they may need to consider include – if and when to start treatment, which treatment to choose, the effect a particular treatment might have and how this could impact on their family.  This YHHN study aims to improve the information currently available to patients and their families, so they can share in the decision-making process and make choices that are right for them.  It also aims to provide detailed information for use by doctors and nurses, so the treatment choices they offer patients are based on the best available evidence.

To do this, researchers will work with patients and their relatives, as well as the doctors and nurses providing care in the YHHN area.  Information will be developed that will tell patients how different treatment choices could affect them, taking into account the type of disease they have, their age, and whether they are male or female.  Based on the experiences of many other patients, we will provide information about: whether treatment is likely to be needed and if so when; how the type of treatment might affect quality of life (including side effects and hospital admissions); and the likelihood of the disease responding to treatment.  Information about the cost of treatment will also be available.  We hope this information will help patients make treatment choices that are right for them, supported by their doctors and nurses.

Study paperwork

Downloadable copies of our participant information leaflets, consent forms and questionnaires

View study paperwork

Frequently asked questions

Answers to the most common questions study participants ask about taking part in YHHN

View frequently asked questions