^{For better end of life care}

The QUALYCARE study aimed to examine the quality of care provided to people in their last stages of life.

The study was carried out in 2010 in different parts of London, including Bromley,  Islington, Sutton & Merton and Westminster. 

We are very grateful to all the 618 people who, having recently lost a friend or relative to cancer, took part in the study by completing the questionnaire.The findings have increased our knowledge of the quality of care and are being used to help improve services locally and nationally.

You can follow our latest news below, and find more information about the study, bereavement and sources of support, and the feedback form at the end of the page. Information on how to contact our research team can be found here.

 

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UPCOMING: QUALYCARE study at the 13^th World Congress of the European Association for Palliative Care (EAPC) in Prague, June 2013

Dr Barbara Gomes (the study coordinator) and Lara Pivodic will be presenting research findings from the QUALYCARE study at the 13^th World Congress of the EAPC in Prague (Czech Republic). Dr Barbara Gomes will present evidence on how place of death is associated with grief intensity (when comparing home and hospital deaths). She will also present findings on whether patients and family carers’ preferences are aligned and how often people change their minds. Lara Pivodic will present care-related factors (such as quality of communication and symptom control) that were found to be associated with high satisfaction with GP home care. All three presentations will be published this year in the scientific journal Palliative Medicine.

QUALYCARE study at the 7^th World Research Congress of the EAPC in Trondheim, June 2012

Dr Barbara Gomes (the study coordinator) and Natalia Calanzani presented research findings from the QUALYCARE study at the 7^th World Research Congress of the EAPC in Trondheim (Norway). The researchers talked about the socio-demographic differences (e.g. in age, gender, and deprivation levels) between people who answered the questionnaire and people who declined to take part. The researchers also presented the main reasons people gave for refusing to participate in the study. Both presentations have been published as abstracts in the scientific journal Palliative Medicine (June 2012; 26: 384-674).

UK policy makers and local health care teams hear results

We have run seven sessions where we presented and discussed the results with the project steering group, representatives of the Department of Health and local NHS services including health care teams in the community, hospitals and hospices. We provided all four Primary Care Trusts with a summary of the results in their own area. QUALYCARE is informing care improvements both nationally and locally.

 Tessa Ing, the Lead of the National End of Life Care Team at the Department of Health, said:

 “The QUALYCARE study adds a whole new layer of sophistication to our understanding of how people are cared for at the end of their life. We will use this to help the NHS develop the services which people really want and which will provide the best experience for them and their families.”

 
Pilot phase published in Palliative Medicine  

The contribution of 20 people who participated in the pilot phase has been fundamental to advance the study and to unpick some of the key areas of end of life care that need improvement. The scientific journal Palliative Medicine published the reports.

Koffman J, Higginson IJ, Hall S, Riley J, McCrone P, Gomes B. Bereaved relatives' views about participating in cancer research. Palliative Medicine 2012; 26(4):379-83

As the study developed, it was important to examine how relatives felt about taking part in the study. We found that 11 out of the 20 participants in the pilot phase found it helpful to participate. Some thought the survey was helpful to them because they shared their experience (in the words of one of the participants, it “felt like a therapy in itself”). Six did not think the survey was distressing and five said that although it brought back memories it was good to take part since they could help others in a similar situation.

 

Higginson IJ.  Hall S, Koffman J, Riley J, Gomes B. Time to get it right: are preferences for place of death more stable than we think? Palliative Medicine 2010; 24(3):352-3.

In the pilot study, we found that most patients had a preference for death to take place at home or in a hospice, but preferences were met only for a quarter. Most relatives shared the patient preference and only three changed their mind in the 3 months before death. If family preferences are as stable and in tune with patient preference as our findings suggest, there is little excuse not to offer and provide the care needed for patients to die peacefully where they wish to be.

QUALYCARE study at the 12^th World Congress of the EAPC in Lisbon, April 2011

Our study coordinator, Barbara Gomes, presented initial findings at the 12^th World Congress of the EAPC in Lisbon (Portugal). She compared the experiences, symptoms and problems (e.g. sense of peace, pain control and family distress) for people who died at home with people who died in hospitals, hospices and care homes. The presentation was published as an abstract in the scientific journal European Journal of Palliative Care (2011; FC10.6).

National Council for Palliative Care highlights QUALYCARE (May 2011)

In their second monthly Policy Round up, the National Council for Palliative Care highlighted the work of QUALYCARE: “it will enrich the evidence base as to what really matters to families and friends in the last months of their loved one’s life and what the lasting impact is when people’s wishes are not met”.

 
Participants get preview of results (January 2011)

People who took part in the study were the first to receive a preview of the results. We found out great stories where care was exemplary and bad stories where things did not go well. There are lessons to learn with every individual story. If you took part in the study, did not receive the results preview and would like to, please contact us.  

Study protocol published in BMC Cancer (August 2010)

The methods used in the QUALYCARE study have been published in the scientific journal BMC Cancer, and are freely available online here. This aids transparency and is helping others conducting research in this sensitive and complex area.

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More information about the study

If you are looking for more information about the study, please read our information leaflet. You can also contact our research team. The QUALYCARE study has been reviewed by an independent group of international scientists and approved by an NHS research ethics committee.

Do you wish to find out more about bereavement and sources of support?

Dealing with the loss of a loved one is not easy. Bereavement can be a distressing experience and remembering the last months of life of a relative or friend takes up time and energy. Writing or talking about it may help but it may also bring back painful memories.
The Royal College of Psychiatrists has produced a leaflet with clear and well-researched information for anyone who has been bereaved, their family and friends, and anyone else who wants to learn more about bereavement. In this leaflet, you will find information about

• how people normally grieve after a loss
• unresolved grief
• places to get help
• other sources of information
• how friends and relatives can help

More information and translations into Chinese, Urdu, Hindu and Spanish are available through the Royal College of Psychiatrist's website.

Do you want to leave any feedback?

Your feedback is important to us, please tell us what you think by completing our feedback form.