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Symptoms and Experiences with Small Cell Lung Cancer: A Mixed Methods Study of Patients and Caregivers

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Titel: Symptoms and Experiences with Small Cell Lung Cancer: A Mixed Methods Study of Patients and Caregivers
Autoren: D. Gwyn Bebb, Cressida Murray, Andromachi Giannopoulou, Enriqueta Felip
Weitere Verfasser: Institut Català de la Salut, [Bebb DG] Global Development, Amgen, One Amgen Centre Drive, Thousand Oaks, USA. Cumming School of Medicine, University of Calgary, Calgary, Canada. [Murray C] HumanBranding Inc., Toronto, ON, Canada. [Giannopoulou A] Amgen (Europe) GmbH, Rotkreuz, Switzerland. [Felip E] Vall d’Hebron Hospital Universitari, Barcelona, Spain. Vall d’Hebron Institute of Oncology (VHIO), Barcelona, Spain, Vall d'Hebron Barcelona Hospital Campus, PRISM
Quelle: Pulm Ther
Scientia
Scientia. Dipòsit d'Informació Digital del Departament de Salut
instname
Pulmonary Therapy, Vol 9, Iss 3, Pp 435-450 (2023)
Verlagsinformationen: Springer Science and Business Media LLC, 2023.
Publikationsjahr: 2023
Schlagwörter: NAMED GROUPS::Persons::Caregivers, Mixed methods, Small cell lung cancer, RC705-779, ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Diagnosis::Diagnostic Techniques and Procedures::Symptom Assessment, DENOMINACIONES DE GRUPOS::personas::cuidadores de pacientes, Brief Report, Cuidadors, Caregiver, Símptomes, 3. Good health, Diseases of the respiratory system, ENFERMEDADES::neoplasias::neoplasias por localización::neoplasias torácicas::neoplasias del tracto respiratorio::neoplasias pulmonares::neoplasias de los bronquios::carcinoma broncogénico::carcinoma pulmonar de células pequeñas, Pulmons - Càncer, TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::diagnóstico::técnicas y procedimientos diagnósticos::evaluación de síntomas, TÉCNICAS Y EQUIPOS ANALÍTICOS, DIAGNÓSTICOS Y TERAPÉUTICOS::técnicas de investigación::métodos epidemiológicos::recopilación de datos::entrevistas como asunto, Interview, Qualitative, DISEASES::Neoplasms::Neoplasms by Site::Thoracic Neoplasms::Respiratory Tract Neoplasms::Lung Neoplasms::Bronchial Neoplasms::Carcinoma, Bronchogenic::Small Cell Lung Carcinoma, ANALYTICAL, DIAGNOSTIC AND THERAPEUTIC TECHNIQUES, AND EQUIPMENT::Investigative Techniques::Epidemiologic Methods::Data Collection::Interviews as Topic, Patient-reported outcome, Entrevista
Beschreibung: Introduction Understanding of the patient-perceived symptom burden of small cell lung cancer (SCLC) is limited. The objective of this study was to explore patients’ experiences with SCLC, identify which treatment-/disease-related symptoms have the greatest impact on their well-being, and gain caregiver perspectives. Methods A noninterventional, cross-sectional, multimodal, mixed methods study was conducted from April–June 2021. Adult patients with SCLC and unpaid caregivers were eligible to participate. Patients’ experiences, captured via 5-day video diaries and follow-up interviews, were scored 1–10 on how bothersome the patients perceived each symptom/symptomatic adverse event. Patients indicated if they believed a symptom was disease or treatment related. Caregivers participated in an online community board. Results The study included nine patients (five with extensive-stage [ES] disease, four with limited-stage [LS] disease) and nine caregivers. Except for one patient/caregiver pairing, patients and caregivers were unmatched. The most common impactful symptoms in patients with ES-SCLC were shortness of breath, fatigue, coughing, chest pain, and nausea/vomiting; in LS-SCLC, these were fatigue and shortness of breath. Among patients with ES disease, SCLC had a high impact on physical (leisure/hobbies, work, sleep, ability to do household chores and errands/responsibilities outside home), social (family dynamics, extrafamilial social interaction), and emotional (mental health) aspects. Patients with LS-SCLC faced the long-term physical effects of treatment, financial implications, and emotional toll of an uncertain prognosis. SCLC had a high personal and psychologic burden among caregivers, whose duties consumed much of their time. Caregivers observed similar symptoms and impacts of SCLC as those reported by patients. Conclusions This study provides valuable insight into patient- and caregiver-perceived burden of SCLC and can inform the design of prospective studies. Clinicians should seek to understand patients’ opinions and priorities before making treatment decisions.
Publikationsart: Article
Other literature type
Dateibeschreibung: application/pdf
Sprache: English
ISSN: 2364-1746
2364-1754
DOI: 10.1007/s41030-023-00229-9
DOI: 10.11575/prism/41475
Zugangs-URL: https://pubmed.ncbi.nlm.nih.gov/37310567
https://hdl.handle.net/11351/10257
https://doaj.org/article/8317d390659f4377b1ef8a86db66a285
Rights: CC BY NC
URL: http://creativecommons.org/licenses/by-nc/4.0/Open Access This article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/ (http://creativecommons.org/licenses/by-nc/4.0/) .
Dokumentencode: edsair.doi.dedup.....d2a792d33413c0c3a3cfee5ab1b513a0
Datenbank: OpenAIRE
Beschreibung
Abstract:Introduction Understanding of the patient-perceived symptom burden of small cell lung cancer (SCLC) is limited. The objective of this study was to explore patients’ experiences with SCLC, identify which treatment-/disease-related symptoms have the greatest impact on their well-being, and gain caregiver perspectives. Methods A noninterventional, cross-sectional, multimodal, mixed methods study was conducted from April–June 2021. Adult patients with SCLC and unpaid caregivers were eligible to participate. Patients’ experiences, captured via 5-day video diaries and follow-up interviews, were scored 1–10 on how bothersome the patients perceived each symptom/symptomatic adverse event. Patients indicated if they believed a symptom was disease or treatment related. Caregivers participated in an online community board. Results The study included nine patients (five with extensive-stage [ES] disease, four with limited-stage [LS] disease) and nine caregivers. Except for one patient/caregiver pairing, patients and caregivers were unmatched. The most common impactful symptoms in patients with ES-SCLC were shortness of breath, fatigue, coughing, chest pain, and nausea/vomiting; in LS-SCLC, these were fatigue and shortness of breath. Among patients with ES disease, SCLC had a high impact on physical (leisure/hobbies, work, sleep, ability to do household chores and errands/responsibilities outside home), social (family dynamics, extrafamilial social interaction), and emotional (mental health) aspects. Patients with LS-SCLC faced the long-term physical effects of treatment, financial implications, and emotional toll of an uncertain prognosis. SCLC had a high personal and psychologic burden among caregivers, whose duties consumed much of their time. Caregivers observed similar symptoms and impacts of SCLC as those reported by patients. Conclusions This study provides valuable insight into patient- and caregiver-perceived burden of SCLC and can inform the design of prospective studies. Clinicians should seek to understand patients’ opinions and priorities before making treatment decisions.
ISSN:23641746
23641754
DOI:10.1007/s41030-023-00229-9