Agreement between personally generated areas of quality of life concern and standard outcome measures in people with advanced cancer

• Published in: Supportive care in cancer Vol. 24; no. 9; pp. 3831 - 3838
• Main Authors: Aburub, Ala’ S, Gagnon, B., Rodríguez, A. M., Mayo, Nancy E.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-09-2016; Springer; Springer Nature B.V
• Subjects: Adult; Aged; Cancer; Clinical outcomes; Fatigue; Female; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Neoplasms - therapy; Nursing; Nursing Research; Oncology; Original Article; Outcome Assessment (Health Care); Pain Medicine; Patient outcomes; Patient Reported Outcome Measures; Patient satisfaction; Psychometrics - methods; Quality of life; Quality of Life - psychology; Quantitative psychology; Rehabilitation Medicine; Surveys and Questionnaires; Validity; Young Adult; Advanced cancer; Validity; Personalized measure; Patient-reported outcomes; Patient-generated index; Psychometric properties; Quality of life
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-016-3204-4

Purpose
People with advanced cancer experience different sequelae which have unique effects on quality of life (QOL). The patient-generated index (PGI) is a personalized measure that allows patients to nominate, rate, and value areas that have the most impact on QOL. Fatigue, pain, and aspects of physical function are among the top 10 areas with QOL impact. An area of validation that is lacking for the PGI is the extent to which spontaneously nominated areas of QOL that patients are concerned with, agree with ratings obtained from standard patient reported outcomes (PROs).
Methods
Data from 192 patients were used to compare ratings on fatigue, pain, and physical function obtained from PGI to those from standard outcome measures.
Results
Within one severity rating, agreement ranged from 32.1 to 76.9 % within the fatigue domain, 34.2 to 95.24 % for pain, and between 84.2 and 94.7 % for physical function. Of the 10 items where the PGI had the highest agreement, 7 came from the RAND-36. At the domain level, people nominating an area scored in the more impaired range on standard measures than people who did not.
Conclusion
PGI gives comparable information as do standard measures.
Implications for cancer
PGI provides important information to guide clinical care of the patient and also produces a legitimate total score suitable for research.