Table 2 Inclusion criteria
Review inclusion criteria | Clarification/Justification |
|---|---|
1. Papers must: - Report an outcome measure that has been subject to validity and reliability testing - Be a systematic review of outcome measures | o Interested in papers that that describe the development and testing of outcome measures that have been through reliability and validity testing or are systematic reviews of existing measures |
2. Outcome measure must be relevant to any patient experiencing an illness or condition for which they are receiving palliative or end of life care | o Palliative care- An approach aiming to improve the quality of life of patients who are facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems. Not intended to hasten or postpone death (World Health Organization 2012) o End of life care- Care that helps those with advanced, progressive, incurable conditions; adults who may die within 12 months; and those with life-threatening acute conditions. It also covers support for the families and carers of people in these groups. o Outcome measure –is: A patient reported outcome (PRO) is any direct patient report about a health condition or its treatment. A PROM is a questionnaire, or series of questions, that ask patients to assess their views on their health, or the impact of received healthcare on their health. PROMs have been widely used across a range of research settings, and more recently in clinical practice. PROMs may be completed as pen and paper questionnaires, or as new technologies allow via computer or mobile formats. Two broad categories of PROM are described: generic and disease- or condition- specific. o Generic measures are not age-, disease-, or treatment-specific. They ask about multiple aspects of overall health and quality of life that have relevance to patients with different conditions and the general population. o Specific measures may be specific to a particular disease or a patient population (, or a specific aspect of health o We are looking for specific measures for palliative and or end of life care and ideally not disease or condition specific |
3. Target patient population must include people receiving palliative and/or end of life care/care of the dying | o See definition of Palliative care and end of life care for point 2. |
4. Papers must include indication that one or more relevant palliative and/or end of life domains (physical, psychological, social and spiritual) have been measured | Based on World Health Organisation definition o Physical- addressing pain and other distressing symptoms present in the patient o Psychological- addressing psychological (mental and/or emotional) aspects of the patient o Social- Offering a support system to help patients live as actively as possible until death; enhancing quality of life for patients o Spiritual- Addressing spiritual (meaningful activity, personal growth, connections) aspects of the patient |
5. Papers must be written in English-language | We do not have the resources or time to translate measures |
6. Papers must have been published between 2005 and 2015 | We are interested in papers published within the last 10 years, since early scoping identified that this period was more likely to produce relevant papers/ discussion of key patient reported outcome measures |
7. Papers must be focused on populations over 18 years of age | We are not looking for measures that re chid or adolescent specific |