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Supportive Care in Cancer
Published in: Supportive Care in Cancer 6/2013

Open Access 01-06-2013 | Original Article

Development and preliminary validation of the pancreatic cancer disease impact score

Authors: Turid Heiberg, Tom Nordby, Tore K Kvien, Trond Buanes

Published in: Supportive Care in Cancer | Issue 6/2013

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Abstract

Objective

Patient-reported outcomes are important for clinical practice and research, and should reflect what patients perceive as important. The objective of this study was to develop and preliminarily validate a brief, patient-derived, disease-specific tool, the pancreatic cancer disease impact (PACADI) score.

Methods

The development was performed in two phases. Forty-one patients with confirmed pancreatic cancer (PC) selected dimensions of health related to the impact of the disease. A weighting of the eight most frequently reported dimensions was performed in a second sample of 80 PC patients who also rated the impact on eight numeric rating scales (NRS, range 0 to 10). The relative weights and the scores from the NRS were used to compute the PACADI score (range 0 to 10). The patients also completed Edmonton Symptom Assessment System (ESAS) and EQ-5D.

Results

Dimensions reported by more than 20 % of the patients were included in the PACADI score (relative weights in parenthesis): pain/discomfort (0.16), fatigue (0.16), anxiety (0.15), bowel/digestive problems (0.14), loss of appetite (0.13), dry mouth (0.11), itchiness (0.08), and nausea (0.07). The PACADI score in the 80 PC patients had a mean (SD) value of 3.26 (2.06) (95 % CI 2.80, 3.71), was moderately to strongly correlated to ESAS sense of well-being (r = 0.69) and EQ-5D (r = −0.52), and discriminated significantly between patients with and without PC.

Conclusion

The PACADI score is a new eight-item, patient-derived, disease-specific measure. Preliminary validation regarding construct validity and discrimination encourages further validation in independent patient samples.
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Literature
1.
Bosetti C, Bertuccio P, Negri E, La VC, Zeegers MP, Boffetta P (2012) Pancreatic cancer: overview of descriptive epidemiology. Mol Carcinog 51:3–13PubMedCrossRef
2.
Michaud DS (2004) Epidemiology of pancreatic cancer. Minerva Chir 59:99–111PubMed
3.
Pandol S, Gukovskaya A, Edderkaoui M, Dawson D, Eibl G, Lugea A (2012) Epidemiology, risk factors, and the promotion of pancreatic cancer: role of the stellate cell. J Gastroenterol Hepatol 27(Suppl 2):127–134PubMedCrossRef
4.
Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K (1991) The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 7:6–9PubMed
5.
Fitzsimmons D, Johnson CD, George S et al (1999) Development of a disease specific quality of life (QoL) questionnaire module to supplement the EORTC core cancer QoL questionnaire, the QLQ-C30 in patients with pancreatic cancer. EORTC Study Group on Quality of Life. Eur J Cancer 35:939–941PubMedCrossRef
6.
The EuroQol Group (1990) EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 16:199–208CrossRef
7.
Revicki DA, Gnanasakthy A, Weinfurt K (2007) Documenting the rationale and psychometric characteristics of patient reported outcomes for labeling and promotional claims: the PRO Evidence Dossier. Qual Life Res 16:717–723PubMedCrossRef
8.
Cleeland CS, Sloan JA (2010) Assessing the Symptoms of Cancer Using Patient-Reported Outcomes (ASCPRO): searching for standards. J Pain Symptom Manage 39:1077–1085PubMedCrossRef
9.
Guyatt GH, Ferrans CE, Halyard MY et al (2007) Exploration of the value of health-related quality-of-life information from clinical research and into clinical practice. Mayo Clin Proc 82:1229–1239PubMedCrossRef
10.
Labori KJ, Hjermstad MJ, Wester T, Buanes T, Loge JH (2006) Symptom profiles and palliative care in advanced pancreatic cancer: a prospective study. Support Care Cancer 14:1126–1133PubMedCrossRef
11.
Gossec L, Dougados M, Rincheval N et al (2009) Elaboration of the preliminary Rheumatoid Arthritis Impact of Disease (RAID) score: a EULAR initiative. Ann Rheum Dis 68:1680–1685PubMedCrossRef
12.
Gossec L, Paternotte S, Aanerud GJ et al (2011) Finalisation and validation of the rheumatoid arthritis impact of disease score, a patient-derived composite measure of impact of rheumatoid arthritis: a EULAR initiative. Ann Rheum Dis 70:935–942PubMedCrossRef
13.
Dougados M, Brault Y, Logeart I, van der Heijde D, Gossec L, Kvien T (2012) Defining cut-off values for disease activity states and improvement scores for patient-reported outcomes: the example of the Rheumatoid Arthritis Impact of Disease (RAID). Arthritis Res Ther 14:R129PubMedCrossRef
14.
Dougados M, Ripert M, Hilliquin P, Brocq O, Brault Y, Logeart I (2012) Onset of action of etanercept in rheumatoid arthritis based on patient-reported outcomes. Clin Exp Rheumatol 30:266–268PubMed
15.
Carle AC, Cella D, Cai L et al (2011) Advancing PROMIS’s methodology: results of the Third Patient-Reported Outcomes Measurement Information System (PROMIS®) Psychometric Summit. Expert Rev Pharmacoecon Outcomes Res 11:677–684PubMedCrossRef
16.
Yamazaki H, Slingsby BT, Takahashi M, Hayashi Y, Sugimori H, Nakayama T (2009) Characteristics of qualitative studies in influential journals of general medicine: a critical review. Biosci Trends 3:202–209PubMed
17.
Guillemin F, Bombardier C, Beaton D (1993) Cross-cultural adaptation of health-related quality of life measures: literature review and proposed guidelines. J Clin Epidemiol 46:1417–1432PubMedCrossRef
18.
Jamison RN, Raymond SA, Slawsby EA, McHugo GJ, Baird JC (2006) Pain assessment in patients with low back pain: comparison of weekly recall and momentary electronic data. J Pain 7:192–199PubMedCrossRef
19.
Pincus T, Bergman M, Sokka T, Roth J, Swearingen C, Yazici Y (2008) Visual analog scales in formats other than a 10 centimeter horizontal line to assess pain and other clinical data. J Rheumatol 35:1550–1558PubMedCrossRef
20.
Fagerland MW, Sandvik L, Mowinckel P (2011) Parametric methods outperformed non-parametric methods in comparisons of discrete numerical variables. BMC Med Res Methodol 11:44PubMedCrossRef
21.
Murad MH, Montori VM, Guyatt GH (2008) Incorporating patient preferences in evidence-based medicine. JAMA 300:2483–2484PubMedCrossRef
22.
Larssen L, Medhus AW, Hjermstad MJ et al (2011) Patient-reported outcomes in palliative gastrointestinal stenting: a Norwegian multicenter study. Surg Endosc 25:3162–3169PubMedCrossRef
23.
Ruta DA, Garratt AM, Leng M, Russell IT, MacDonald LM (1994) A new approach to the measurement of quality of life. The Patient-Generated Index. Med Care 32:1109–1126PubMedCrossRef
24.
Heiberg T, Kvien TK, Dale O et al (2007) Daily health status registration (patient diary) in patients with rheumatoid arthritis: a comparison between personal digital assistant and paper-pencil format. Arthritis Rheum 57:454–460PubMedCrossRef
25.
Heiberg T, Kvien TK (2002) Preferences for improved health examined in 1,024 patients with rheumatoid arthritis: pain has highest priority. Arthritis Rheum 47:391–397PubMedCrossRef
26.
Frost MH, Reeve BB, Liepa AM, Stauffer JW, Hays RD (2007) What is sufficient evidence for the reliability and validity of patient-reported outcome measures? Value Health 10(Suppl 2):S94–S105PubMedCrossRef
27.
Sonnenberg A, Rodriguez SA, Faigel DO (2008) Diagnostic ascertainment of suspicious pancreatic mass: a threshold analysis. Clin Gastroenterol Hepatol 6:1162–1166PubMedCrossRef
Metadata
Title
Development and preliminary validation of the pancreatic cancer disease impact score
Authors
Turid Heiberg
Tom Nordby
Tore K Kvien
Trond Buanes
Publication date
01-06-2013
Publisher
Springer-Verlag
Published in
Supportive Care in Cancer / Issue 6/2013
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-012-1713-3

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