Skip to main content
main-content

Tipp

Weitere Artikel dieser Ausgabe durch Wischen aufrufen

04.07.2019 Open Access

Exploring the patient experience of locally advanced or metastatic pancreatic cancer to inform patient-reported outcomes assessment

Zeitschrift:
Quality of Life Research
Autoren:
Joseph M. Herman, Helen Kitchen, Arnold Degboe, Natalie V. J. Aldhouse, Andrew Trigg, Mary Hodgin, Amol Narang, Colin D. Johnson
Wichtige Hinweise

Electronic supplementary material

The online version of this article (https://​doi.​org/​10.​1007/​s11136-019-02233-6) contains supplementary material, which is available to authorized users.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Abstract

Purpose

Pancreatic cancer and its treatments impact patients’ symptoms, functioning, and quality of life. Content-valid patient-reported outcome (PRO) instruments are required to assess outcomes in clinical trials. This study aimed to: (a) conceptualise the patient experience of pancreatic cancer; (b) identify relevant PRO instruments; (c) review the content validity of mapped instruments to guide PRO measurement in clinical trials.

Methods

Qualitative literature and interviews with clinicians and patients were analysed thematically to develop a conceptual model of patient experience. PRO instruments were reviewed against the conceptual model to identify gaps in measurement. Cognitive debriefing explored PRO conceptual relevance and patients’ understanding.

Results

Patients in the USA (N = 24, aged 35–84) and six clinicians (from US and Europe) were interviewed. Pre-diagnosis, pain was the most frequently reported symptom (N = 21). Treatments included surgery, radiation, chemotherapy, and immunotherapy. Surgery was associated with acute pain and gastrointestinal symptoms. Chemotherapy/chemoradiation side effects were cyclical and included fatigue/tiredness (N = 21), appetite loss (N = 15), bowel problems (N = 15), and nausea/vomiting (N = 15). Patients’ functioning and well-being were impaired. The literature review identified 49 PRO measures; the EORTC QLQ-C30/PAN26 were used most frequently and mapped with interview concepts. Patients found the EORTC QLQ-C30/PAN26 to be understandable and relevant; neuropathic side effects were suggested additions.

Conclusions

This is the first study to develop a conceptual model of patients’ experience of metastatic/recurrent pancreatic cancer and explore the content validity of the EORTC QLQ-C30/PAN26 following therapeutic advances. The EORTC QLQ-C30/PAN26 appears conceptually relevant; additional items to assess neuropathic side effects are recommended. A recall period should be stated throughout to standardise responses.

Unsere Produktempfehlungen

Springer Professional "Wirtschaft+Technik"

Online-Abonnement

Mit Springer Professional "Wirtschaft+Technik" erhalten Sie Zugriff auf:

  • über 69.000 Bücher
  • über 500 Zeitschriften

aus folgenden Fachgebieten:

  • Automobil + Motoren
  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Elektrotechnik + Elektronik
  • Energie + Umwelt
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Maschinenbau + Werkstoffe
  • Versicherung + Risiko

Testen Sie jetzt 30 Tage kostenlos.

Basis-Abo der Gesellschaft für Informatik

Sie erhalten uneingeschränkten Vollzugriff auf die Inhalte der Fachgebiete Business IT + Informatik und Management + Führung und damit auf über 30.000 Fachbücher und ca. 130 Fachzeitschriften.

Premium-Abo der Gesellschaft für Informatik

Sie erhalten uneingeschränkten Vollzugriff auf alle acht Fachgebiete von Springer Professional und damit auf über 45.000 Fachbücher und ca. 300 Fachzeitschriften.

Weitere Produktempfehlungen anzeigen
Zusatzmaterial
Supplementary material 1 (DOCX 15 kb)
11136_2019_2233_MOESM1_ESM.docx
Supplementary material 2 (DOCX 15 kb)
11136_2019_2233_MOESM2_ESM.docx
Supplementary material 3 (DOCX 12 kb)
11136_2019_2233_MOESM3_ESM.docx
Supplementary material 4 (DOCX 62 kb)
11136_2019_2233_MOESM4_ESM.docx
Supplementary material 5 (DOCX 15 kb)
11136_2019_2233_MOESM5_ESM.docx
Supplementary material 6 (DOCX 167 kb)
11136_2019_2233_MOESM6_ESM.docx
Supplementary material 7 (DOCX 13 kb)
11136_2019_2233_MOESM7_ESM.docx
Supplementary material 8 (DOCX 12 kb)
11136_2019_2233_MOESM8_ESM.docx
Supplementary material 9 (DOCX 12 kb)
11136_2019_2233_MOESM9_ESM.docx
Supplementary material 10 (DOCX 34 kb)
11136_2019_2233_MOESM10_ESM.docx
Literatur
Über diesen Artikel

Premium Partner

    Bildnachweise