van der steen jenny

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• Pain and other symptoms

• Palliative care for cancer patients

• Palliative care for non cancer 

patients

• Paediatric palliative care

• Palliative care for the elderly

• The actors of palliative care

• Latest on drugs

• Pain

• Illness and suffering through

media

• Marginalisation and social stigma

at the end of life

• Palliative care advocacy projects

• Prognosis and diagnosis

communication in

different cultures

• Communication between doctor-

patient and patient-

equipe

• Religions and cultures versus

suffering, death and

bereavement

• Public institution in the world:

palliative care policies

and law

• Palliative care: from villages to

metropolies

• Space, light and gardens for the

terminally ill patient

• End-of-life ethics

• Complementary therapies

• Education, training and research

• Fund-raising and no-profit

• Bereavement support• Volunteering in palliative care

Research in end of life with dementia: pitfalls and possibilities for quantitative studies

Author: Jenny Van der Steen

Studying end of life in dementia is challenging because of the frailty of the population,additional cognitive problems and difficulty of assessing when patients enter the terminal phase.Because of its potential benefit to large numbers of future patients, over recent years, researchhas expanded rapidly. Quantitative studies, including observational studies which are frequentlyethically appropriate, are helpful to increase the desired evidence base of effective treatment andend-of-life care in dementia patients. They are not invasive, and long-term care institutions canhost longitudinal studies with strong designs. Equalizing instruments across studies allows forcross-national comparison of studies providing additional benefits. Several methodologicalchallenges need to be addressed, including: definition of the terminal phase, use of specific validand reliable and preferably common assessment instruments, adequate adjustment in the analytic

 phase, and careful interpretation of results in light of a lack of standards of care. Examples ofhow these challenges can be addressed will be presented, such as how to measure discomfort and

symptom burden, and how to adjust for confounding in assessing associations between treatmentand outcome in observational studies.

Session: Training & Research in palliative care

Chair: Dott. Franco Toscani

Antea Worldwide Palliative Care ConferenceRome, 12-14 November 2008

Jenny Van der Steen

 j.vandersteen@vumc.nl 

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• Rehabilitation in palliative care

• Palliative care quality indicators

• Neurology in palliative care