Health-related quality of life (EuroQol 5D-5L) in patients with autoimmunity in the context of immunotherapy: A large dataset comprising cancer patients after cessation of checkpoint inhibitor therapy and patients with autoimmune diseases

Thomas U Schulz; Sarah Zierold; Michael M Sachse; Giulia Pesch; Dirk Tomsitz; Katharina Schilbach; Katharina C Kähler; Lars E French; Lucie Heinzerling

doi:10.1016/j.dib.2022.108676

Health-related quality of life (EuroQol 5D-5L) in patients with autoimmunity in the context of immunotherapy: A large dataset comprising cancer patients after cessation of checkpoint inhibitor therapy and patients with autoimmune diseases

Data Brief. 2022 Oct 14:45:108676. doi: 10.1016/j.dib.2022.108676. eCollection 2022 Dec.

Authors

Thomas U Schulz¹, Sarah Zierold^{1

2}, Michael M Sachse³, Giulia Pesch¹, Dirk Tomsitz¹, Katharina Schilbach⁴, Katharina C Kähler⁵, Lars E French^{1

6}, Lucie Heinzerling^{1

2

7}

Affiliations

¹ Department of Dermatology and Allergy, University Hospital, LMU Munich, Frauenlobstr. 9-11, 80337 Munich, Germany.
² Side Effect Registry Immuno-Oncology SERIO, http://www.serio-registry.org, Frauenlobstr. 9-11, 80337 Munich, Germany.
³ Department of Dermatology, Allergology and Phlebology, Hospital Bremerhaven Reinkenheide, Postbrookstr. 103, 27574 Bremerhaven, Germany.
⁴ Medizinische Klinik und Poliklinik IV, LMU Klinikum, Ziemssenstr. 5, 80336 Munich, Germany.
⁵ Department of Dermatology, University Hospital Schleswig-Holstein, Arnold-Heller-Str. 3, 24105 Kiel, Germany.
⁶ Dr. Philip Frost, Department of Dermatology and Cutaneous Surgery, University of Miami Miller School of Medicine, 1295 NW 14th Street, Miami, Florida 33125, USA.
⁷ Department of Dermatology, University Hospital Erlangen, Ulmenweg 8, 91054 Erlangen, Germany.

Abstract

This dataset contains demographic, clinical, and health-related quality of life (HRQoL) data from 2905 patients including 200 cancer patients after immune checkpoint inhibitor (ICI) cessation and 2705 patients with a wide variety of autoimmune diseases. Within this multicenter, cross-sectional survey study data were collected questionnaire-based in cancer patients (ICI-patients) ≥ 18 years of age who had received at least one dose of ICI with ≥ 12 weeks since ICI discontinuation. Patients with autoimmune diseases (AI-patients) were ≥ 18 years, had at least one autoimmune disease and had never received ICI. ICI-patients were recruited in three skin cancer centers and via support groups. AI-patients were recruited in an outpatient clinic for internal medicine and via support groups. Specific questionnaires for ICI-patients/AI-patients were provided paper-based for patients from outpatient clinics and online for patients from support groups. Both questionnaires contained sections with demographic information, clinical data, and the standardized patient-reported outcome measure EuroQol 5D-5L (EQ-5D-5L) to assess HRQoL. Clinical data focused on autoimmunity and therapy of autoimmunity in (1) ICI-patients referring to particularly persistent immune-related adverse events (persistent irAEs) and in (2) AI-patients referring to respective autoimmune diseases. Additionally, specific items on cancer and cancer therapy were included in ICI-patients, and AI-patients were asked about the presence of acute exacerbations of autoimmune diseases. This dataset contains the raw data for ICI-patients and AI-patients, analyzed data on patient demographics, clinical characteristics and HRQoL scores among ICI-patients with/without persistent irAEs and among AI-patients. The data provide a basis for further investigations within the cohort of ICI-patients after ICI cessation and/or for AI-patients with different autoimmune diseases with regard to HRQoL, autoimmunity and therapy of autoimmunity.

Keywords: Chronic toxicities; Long-term sequelae; Melanoma; Persistent immune-related adverse events (persistent irAEs); Sarcoidosis; Sjogren's syndrome; Vitiligo; hypothyroidism.