Journal
JOURNAL OF INHERITED METABOLIC DISEASE
Volume 46, Issue 5, Pages 796-805Publisher
WILEY
DOI: 10.1002/jimd.12622
Keywords
health literacy; HrQol; MetabQol; outcome measures; patient education; patient-centred medicine
Ask authors/readers for more resources
Patient reported outcomes (PROs) are reports of a patient's health condition that come directly from the patient without interpretation by a clinician or others. PROs include subjective perceptions of how patients function or feel in relation to their health condition and its treatment, and also include health-related quality of life (HrQoL) and information on functional status, signs and symptoms.
Patient reported outcomes (PROs) are generally defined as 'any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else'. A broader definition of PRO also includes 'any information on the outcomes of health care obtained directly from patients without modification by clinicians or other health care professionals'. Following this approach, PROs encompass subjective perceptions of patients on how they function or feel not only in relation to a health condition but also to its treatment as well as concepts such as health-related quality of life (HrQoL), information on the functional status of a patient, signs and symptoms and symptom burden. PRO measurement instruments (PROMs) are mostly questionnaires and inform about what patients can do and how they feel. PROs and PROMs have not yet found unconditional acceptance and wide use in the field of inborn errors of metabolism. This review summarises the importance and usefulness of PROs in research, drug legislation and clinical care and informs about quality standards, development, and potential methodological shortfalls of PROMs. Inclusion of PROs measured with high-quality, well-selected PROMs into clinical care, drug legislation, and research helps to identify unmet needs, improve quality of care, and define outcomes that are meaningful to patients. The field of IEM should open to new methodological approaches such as the definition of core sets of variables including PROs to be systematically assessed in specific metabolic conditions and new collaborations with PRO experts, such as psychologists to facilitate the systematic collection of meaningful data.
Authors
I am an author on this paper
Click your name to claim this paper and add it to your profile.
Reviews
Recommended
No Data Available