These measures, commonly called, patient-reported outcome measures, can assist patients and clinicians make better decisions, and most importantly help address symptoms, and areas of quality of life that are important for patients. For this reason, the Palliative Outcome Scale (POS) Development Team led by Prof Irene J Higginson at the Cicely Saunders Institute have been developing and validating patient-reported outcome measures that are freely available and has produced one of the most widely used measures with diverse patient populations living with life-limiting illnesses - the Palliative care Outcome Scale and its family of measures.
As part of ARC South London’s Palliative and End of Life Care Theme’s work focusing on outcomes, health and social care costs, symptom management and prevention, the extended Palliative care Outcome Scale has been cross-culturally adapted and validated, and available for Turkish speaking patients living with life-threatening illnesses.
Mr Hameed Khan, a Cicely Saunders Institute Patient, Family and Public Involvement Member, on the role of translated and culturally adapted measures in inclusion of ethnic minorities in their care in the UK said:
Language and culturally translated materials are vital to engage patients and the public who have limited English and face language barriers.
This study was supported by NIHR ARC South London, and was led by Prof Irene J Higginson and Dr Mev Hocaoglu. The findings of this study have now been published in Health and Quality of Life Outcomes Journal (https://doi.org/10.1186/s12955-020-01535-5) and the Turkish IPOS along with versions in other languages are freely available to download from ww.pos-pal.org .