Palliative Care Measurement Tool Library

Please complete the brief online request form and a copy of the library will be emailed to you immediately.

The library is divided into two sections, one for adult instruments and one for pediatric instruments.  It contains a summary of each instrument, including: content, number of items, respondent, recall period, whether it requires an interviewer, estimated completion time, and key citations with links to PubMed abstracts.  Investigators may search based on the content category (Column C) or disease groups (Column D) in order to focus in on instruments that may be most relevant to their research. In addition, investigators must determine whether the instrument is appropriate for their particular research study.

This includes whether the content of the instruments corresponds to what they want to measure; whether it has demonstrated validity, reliability, and responsiveness; and whether it is appropriate for the context of use (i.e., the study population, the disease condition, and the study environment). Information about measurement, instrument selection, and study design with patient-reported outcomes can be found in the PCRC Measurement Core resource pages.

Instruments that assess caregiver needs and experience can be found in the PCRC Caregiver Core resources pages. Because patients along with their caregivers and other family members require palliative care, you may need to consult both instrument resources.

The instruments included in the library are those that were endorsed by published systematic reviews relevant to palliative care.  A bibliography of these systematic reviews is available for reference. The systematic reviews varied in their criteria and their rating method.  Nonetheless, the instruments that were “recommended” or “highly scored” etc., by the authors of each systematic review are included in this library.

This method will omit some valid and reliable instruments that may be important in particular research studies, but does create a compendium of the highest quality and most commonly used instruments for the field. In a rapidly emerging field of investigation, further evidence for instruments will expand this library over time.

The PCRC Measurement Core continues to search for high quality systematic reviews of measurement instruments relevant to palliative care research.  While we do not accept nominations of individual instruments, we welcome nominations of additional systematic reviews to assist in meaningful expansion of this resource for palliative care investigators.  Please send nominations by email to Antonia Bennett (avbenn@unc.edu).

Please note that inclusion of an instrument in this library is not an endorsement by the PCRC. Please also note that the investigator is responsible for obtaining any permissions or licenses for using the instruments in their research.

If someone outside of your research group would be interested to obtain a copy of the Palliative Care Measurement Tool Library, please have them complete the online request form.