Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
Supportive Care in Cancer
Published in: Supportive Care in Cancer 1/2016

01-01-2016 | Original Article

Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer

Authors: Ala’ S. Aburub, B. Gagnon, A. M. Rodríguez, Nancy E. Mayo

Published in: Supportive Care in Cancer | Issue 1/2016

Login to get access

Abstract

Purposes

Patient Generated Index (PGI) is designed to both ask and document quality of life (QOL) concerns. Its validity with respect to standard QOL measures has not been fully established for advanced cancer when QOL concerns predominate. The specific objective of this study is to identify, for people with advanced cancer, similarities and differences in ratings of global QOL between personalized and standard measures.

Methods

A total of 192 patients completed five QOL measures at study entry: PGI, generic measures (SF-6D, EQ-5D), and cancer-specific measures of QOL (McGill Quality of Life Questionnaire and Edmonton Symptoms Assessment Scale). Comparisons among total scores were compared using Generalized Estimating Equations (GEE).

Results

Patients voiced 114 areas of QOL concerns by the PGI with the top three being fatigue, sleep, and pain (39.2, 22.6, and 21.6 %, respectively). PGI total QOL score was 25 to 30 percentage points lower than those documented by the other measures, particularly when QOL was poor. Correlations between PGI and other measures were low.

Conclusion

PGI allowed patients to express a wide range of QOL concerns, many that were not assessed by other QOL measures. If only one QOL measure is to be included, either in a clinical setting or for research, the PGI would satisfy many of the criteria for “best choice.” PGI could be considered a cancer-specific QOL measure.

Implications for cancer

This study provides evidence that the PGI would be a good measure for patients and clinicians to use together to identify areas of concern that require attention and monitor changing needs.
Literature
1.
2.
3.
4.
Lehmann JF et al (1978) Cancer rehabilitation: assessment of need, development, and evaluation of a model of care. Arch Phys Med Rehabil 59(9):410–419PubMed
5.
Ness KK et al (2006) Physical performance limitations and participation restrictions among cancer survivors: a population-based study. Ann Epidemiol 16(3):197–205PubMedCrossRef
6.
O’Boyle CA et al (1992) Individual quality of life in patients undergoing hip replacement. Lancet 339(8801):1088–1091PubMedCrossRef
7.
Ruta DA et al (1994) A new approach to the measurement of quality of life. The Patient-Generated Index. Med Care 32(11):1109–1126PubMedCrossRef
8.
Broadhead JK, Robinson JW, Atkinson MJ (1998) A new quality-of-life measure for oncology: The SEIQoL. J Psychosoc Oncol 16(1):21–35CrossRef
9.
Tavernier SS et al (2011) Validity of the Patient Generated Index as a quality-of-life measure in radiation oncology. Oncol Nurs Forum 38(3):319–329PubMedCrossRef
10.
Tavernier SS, Totten AM, Beck SL (2011) Assessing content validity of the patient generated index using cognitive interviews. Qual Health Res 21(12):1729–1738PubMedCrossRef
11.
Frick E, Tyroller M, Panzer M (2007) Anxiety, depression and quality of life of cancer patients undergoing radiation therapy: a cross-sectional study in a community hospital outpatient centre. Eur J Cancer Care 16(2):130–136CrossRef
12.
Montgomery C et al (2002) Individual quality of life in patients with leukaemia and lymphoma. Psychooncology 11(3):239–243PubMedCrossRef
13.
Waldron D et al (1999) Quality-of-life measurement in advanced cancer: assessing the individual. J Clin Oncol 17(11):3603–3611PubMed
14.
Rodriguez AM, Mayo NE, Gagnon B (2013) Independent contributors to overall quality of life in people with advanced cancer. Br J Cancer 108(9):1790–1800PubMedCrossRef
15.
Cohen SR et al (1997) Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 11(1):3–20PubMedCrossRef
16.
Osoba D, King M (2005) Meaningful differences. In: Fayers PM, Hays RD (eds) Assessing quality of life in clinical trials, 2 edn. Oxford University Press, New York, pp. 243–257 p. 5 A.D. 251
17.
Wilson IB, Cleary PD (1995) Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. JAMA 273(1):59–65PubMedCrossRef
18.
Ruta DA, Garratt AM, Russell IT (1999) Patient centred assessment of quality of life for patients with four common conditions. Qual Health Care 8(1):22–29PubMedCentralPubMedCrossRef
19.
Camilleri-Brennan J, Ruta DA, Steele RJ (2002) Patient generated index: new instrument for measuring quality of life in patients with rectal cancer. World J Surg 26(11):1354–1359PubMedCrossRef
20.
Lewis S et al (2002) Quality of life issues identified by palliative care clients using two tools. Contemp Nurse 12(1):31–41PubMedCrossRef
21.
Llewellyn CD, McGurk M, Weinman J (2006) Head and neck cancer: to what extent can psychological factors explain differences between health-related quality of life and individual quality of life? Br J Oral Maxillofac Surg 44(5):351–357PubMedCrossRef
22.
23.
EuroQOL Group (1990) EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 16(3):199–208CrossRef
24.
Gudex C et al. (1996) Health state valuations from the general public using the visual analogue scale. Qual Life Res 5(6):521–531PubMedCrossRef
25.
26.
Bansback N et al (2012) Canadian valuation of EQ-5D health states: preliminary value set and considerations for future valuation studies. PLoS One 7(2):e31115PubMedCentralPubMedCrossRef
27.
Oremus M et al (2014) Health utility scores in Alzheimer’s disease: differences based on calculation with American and Canadian preference weights. Value Health 17(1):77–83PubMedCrossRef
28.
Shaw JW, Johnson JA, Coons SJ (2005) US valuation of the EQ-5D health states: development and testing of the D1 valuation model. Med Care 43(3):203–220PubMedCrossRef
29.
Lee JA et al (2014) Comparison of health-related quality of life between cancer survivors treated in designated cancer centers and the general public in Korea. Jpn J Clin Oncol 44(2):141–152PubMedCrossRef
30.
Shim EJ et al (2011) Comprehensive needs assessment tool in cancer (CNAT): the development and validation. Support Care Cancer 19(12):1957–1968PubMedCrossRef
31.
Glick HA et al (1998) Empirical criteria for the selection of quality-of-life instruments for the evaluation of peripheral blood progenitor cell transplantation. Int J Technol Assess Health Care 14(3):419–430PubMedCrossRef
32.
Pickard AS et al (2007) Health utilities using the EQ-5D in studies of cancer. PharmacoEconomics 25(5):365–384PubMedCrossRef
33.
Brazier J, Roberts J, Deverill M (2002) The estimation of a preference-based measure of health from the SF-36. J Health Econ 21(2):271–292PubMedCrossRef
34.
Hever, N.V., et al (2014) Health related quality of life in patients with bladder cancer: a cross-sectional survey and validation study of the Hungarian version of the bladder cancer index. Pathol Oncol Res
35.
Gallop K et al (2015) A qualitative evaluation of the validity of published health utilities and generic health utility measures for capturing health-related quality of life (HRQL) impact of differentiated thyroid cancer (DTC) at different treatment phases. Qual Life Res 24(2):325–338PubMedCrossRef
36.
37.
Lee L et al (2013) Valuing postoperative recovery: validation of the SF-6D health-state utility. J Surg Res 184(1):108–114PubMedCrossRef
38.
Barton GR et al (2008) An assessment of the discriminative ability of the EQ-5D index, SF-6D, and EQ VAS, using sociodemographic factors and clinical conditions. Eur J Health Econ 9(3):237–249PubMedCrossRef
39.
40.
Bruera E et al (1991) The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 7(2):6–9PubMed
41.
Cohen SR et al (2001) Changes in quality of life following admission to palliative care units. Palliat Med 15(5):363–371PubMedCrossRef
42.
Cohen SR, Mount BM (2000) Living with cancer: “good” days and “bad” days—what produces them? Can the McGill quality of life questionnaire distinguish between them? Cancer 89(8):1854–1865PubMedCrossRef
43.
Cohen SR et al (1995) The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med 9(3):207–219PubMedCrossRef
44.
Cohen SR et al (1996) Existential well-being is an important determinant of quality of life. Evidence from the McGill Quality of Life Questionnaire. Cancer 77(3):576–586PubMedCrossRef
45.
Nekolaichuk CL et al (1999) Assessing the reliability of patient, nurse, and family caregiver symptom ratings in hospitalized advanced cancer patients. J Clin Oncol 17(11):3621–3630PubMed
46.
Chang VT, Hwang SS, Feuerman M (2000) Validation of the Edmonton Symptom Assessment Scale. Cancer 88(9):2164–2171PubMedCrossRef
47.
Cohen SR et al (1996) Quality of life in HIV disease as measured by the McGill quality of life questionnaire. AIDS 10(12):1421–1427PubMedCrossRef
48.
49.
Denlinger CS et al (2014) Survivorship: sleep disorders, version 1.2014. J Natl Compr Cancer Netw 12(5):630–642
50.
Dickerson SS et al (2014) Sleep-wake disturbances in cancer patients: narrative review of literature focusing on improving quality of life outcomes. Nat Sci Sleep 6:85–100PubMedCentralPubMedCrossRef
51.
Moens K, Higginson IJ, Harding R (2014) Are there differences in the prevalence of palliative care-related problems in people living with advanced cancer and eight non-cancer conditions? A systematic review. J Pain Symptom Manag 48(4):660–677CrossRef
52.
Olson K (2014) Sleep-related disturbances among adolescents with cancer: a systematic review. Sleep Med 15(5):496–501PubMedCrossRef
53.
Otte JL et al (2015) Systematic review of sleep disorders in cancer patients: can the prevalence of sleep disorders be ascertained? Cancer Med 4(2):183–200PubMedCentralPubMedCrossRef
54.
Aaronson NK et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85(5):365–376PubMedCrossRef
55.
Letellier, M.E., D. Dawes, and N. Mayo (2014) Content verification of the EORTC QLQ-C30/EORTC QLQ-BR23 with the International Classification of Functioning, Disability and Health. Qual Life Res
56.
Cella DF et al (1993) The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 11(3):570–579PubMed
57.
58.
Kuspinar A, Mayo NE (2013) Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis? Health Qual Life Outcomes 11:71PubMedCentralPubMedCrossRef
59.
60.
Norman GR, Sloan JA, Wyrwich KW (2003) Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care 41(5):582–592PubMed
61.
McHorney CA, Tarlov AR (1995) Individual-patient monitoring in clinical practice: are available health status surveys adequate? Qual Life Res 4(4):293–307PubMedCrossRef
Metadata
Title
Using a personalized measure (Patient Generated Index (PGI)) to identify what matters to people with cancer
Authors
Ala’ S. Aburub
B. Gagnon
A. M. Rodríguez
Nancy E. Mayo
Publication date
01-01-2016
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 1/2016
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-015-2821-7

Other articles of this Issue 1/2016

Supportive Care in Cancer 1/2016 Go to the issue

Original Article

Unplanned oncology admissions within 14 days of non-surgical discharge: a retrospective study

Original Article

Prevalence of severe depressive symptoms increases as death approaches and is associated with disease burden, tangible social support, and high self-perceived burden to others

Original Article

Clinical predictors of aspiration after esophagectomy in esophageal cancer patients

Original Article

Presurgical symptom profiles predict quality of life 2 years after surgery in women with breast cancer

Original Article

Indigenous cancer patient and staff attitudes towards unmet needs screening using the SCNAT-IP

Original Article

Associations between oral complications and days to death in palliative care patients
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine
Image Credits