Palliative medicine
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Palliative medicine · Dec 2016
ReviewCurrent understanding of decision-making in adolescents with cancer: A narrative systematic review.
Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance. ⋯ Striving to make parents and adolescents fully informed or urge them towards more independence than they prefer may add to distress and confusion. This may interfere with their ability to participate in their preferred way in decisions about care and treatment. Future research should include analysis of on-ground interactions among parents, adolescents and clinicians across the trajectory.
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Palliative medicine · Dec 2016
ReviewHealth-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use.
The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. ⋯ There is currently no 'ideal' outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field.