title: Coping with an Advanced Stage Lung Cancer Diagnosis: Patient, Caregiver, and Provider Perspectives on the Role of the Health Care System.
abstract: Although lung cancer is the leading cause of cancer death in the USA, there have been few studies on patient-centered advanced lung cancer treatment practices. As part of a larger research study on how to use a patient-inclusive approach in late-stage lung cancer treatment, this present study describes patient, caregiver, and provider perspectives on the role of the health care system in helping patients cope with an advanced stage lung cancer diagnosis. Four focus group sessions were conducted with six to eleven participants per group for a total of 36 participants. Two focus groups were held with patients and family members/caregivers and two with physicians and nurses. A major theme that emerged concerned coping with an advanced lung cancer diagnosis, which is the subject of this paper. The patients, caregivers, and providers spoke passionately about interactions with the health care system and volunteered examples of supportive and non-supportive relationships between patients and clinicians. They advocated for better patient-provider communication practices as well as the expanded use of patient navigation and new patient orientation programs. This study contributes additional knowledge by including the perspectives of caregivers and providers who live and work closely with patients with advanced lung cancer. The findings can inform the development of comprehensive patient-centered care plans for patients living with an advanced lung cancer diagnosis.
authors.affiliation: Department of Epidemiology, College of Public Health (CoPH), University of Nebraska Medical Center (UNMC), Omaha, NE, USA. kmislam@unmc.edu.
authors.forename: K M
authors.initials: KM
authors.lastname: Islam
authors.affiliation: Department of Health Policy and Management, Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, GA, USA.
authors.forename: Samuel T
authors.initials: ST
authors.lastname: Opoku
authors.affiliation: Department of Health Policy and Management, Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, GA, USA.
authors.forename: Bettye A
authors.initials: BA
authors.lastname: Apenteng
authors.affiliation: Department of Health Services Research, Administration, and Policy, UNMC, CoPH, Omaha, NE, USA.
authors.forename: Ann
authors.initials: A
authors.lastname: Fetrick
authors.affiliation: Nebraska Cancer Coalition, Lincoln, NE, USA.
authors.forename: June
authors.initials: J
authors.lastname: Ryan
authors.affiliation: Saint Francis Cancer Treatment Center of Grand Island, Grand Island, NE, USA.
authors.forename: M
authors.initials: M
authors.lastname: Copur
authors.affiliation: Avera Cancer Institute of Sioux Falls, Sioux Falls, SD, USA.
authors.forename: Addison
authors.initials: A
authors.lastname: Tolentino
authors.affiliation: Callahan Cancer Center of North Platte, North Platte, NE, USA.
authors.forename: Irfan
authors.initials: I
authors.lastname: Vaziri
authors.affiliation: Veterans Healthcare Administration, Nebraska-Western Iowa Health Care System, Omaha, NE, USA.|Division of Oncology and Hematology of Omaha, UNMC, Omaha, NE, USA.
authors.forename: Apar K
authors.initials: AK
authors.lastname: Ganti
mesh_terms: D000223:Adaptation, Psychological; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D003657:Decision Making; D003695:Delivery of Health Care / Q000458:organization & administration*; D005260:Female; D017144:Focus Groups; D006282:Health Personnel / Q000523:psychology*; D006801:Humans; D008175:Lung Neoplasms / Q000175:diagnosis* / Q000523:psychology* / Q000628:therapy; D008297:Male; D063868:Patient Outcome Assessment; D018802:Patient-Centered Care; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires
keywords: Advanced stage lung cancer; Caregivers; Coping with cancer; Patient-centered care; Providers; Stage IV lung cancer