Qualitative assessment of organizational barriers to optimal lung cancer care in a community hospital setting in the United States
Background Lung cancer is a major public health challenge in the United States with a complicated process of care delivery. In addition, it is a challenge for many lung cancer patients and their caregivers to navigate health care systems while coping with the disease.
Objective To explore the organizational barriers to receiving quality health care from the perspective of lung cancer patients and their caregivers.
Methods In a qualitative study involving 10 focus groups of patients and their caregivers, we recorded and transcribed guided discussions for analysis by using Dedoose software to investigate recurrent themes.
Results Analysis of the transcriptions revealed 4 recurring themes related to organizational barriers to quality care: insurance, scheduling, communication, and knowledge. The participants perceived support with navigating the health care system, either through their own social network or from within the health care systems, as beneficial in coping with the lung cancer, seeking information, expediting appointments, connecting patients to physicians, and receiving timely care.
Limitations Institutional and geographic differences in the experience of lung cancer care may limit the generalizability of the results of this study.
Conclusions This study offers insights into the perspectives of lung cancer patients and caregivers on the organizational barriers to receiving quality care. Targeting barriers related to insurance coverage, appointment scheduling, provider-patient communication, and patient or family education about lung cancer and its treatment process will likely improve patient and caregiver experience of care.
Funding Partially funded through a Patient-Centered Outcomes Research Institute Award (IH-1304-6147).
Accepted for publication March 2, 2018
Correspondence Raymond U Osarogiagbon, MBBS; rosarogi@bmhcc.org
Disclosures The authors report no disclosures/conflicts of interest.
Citation JCSO 2018;16(2):e89-e96.
©2018 Frontline Medical Communications
doi https://doi.org/10.12788/jcso.0394
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Patient I have to call the month before to make the appointment because they don’t take appointments so far—‘Oh, we’re not working on that yet.’ I find that very annoying ....
Caregiver The last time I was there I waited four hours.
Caregiver … your appointment at 9:00 and you get called back at 9:30 or 10:00 and you get to see the doctor by 11:00, but that’s not any different than anywhere, unfortunately ….
,Rescheduled appointments also posed a problem for participants. Constant rescheduling was an inconvenience for both patients and caregivers. Many were unhappy with rescheduling because both patients and caregivers had prepared mentally and physically for an appointment, only to be told that they would have to reschedule, which caused delays in the care process.
Patient I think every single visit I had with him gets rescheduled at least twice ....
Caregiver Three times this week we’ve been geared up, ready to have chemo and they keep changing it.
Patient Everything was fine with me, but they keep cancelling my appointments ....
Some participants perceived that the popularity of physicians might explain the difficulty with scheduling. Patients suggested that it is challenging to get appointments with better-known physicians, so they are more accepting of appointments at any time, even if the time is inconvenient for them.
Caregiver Of course, … if you have a popular doctor, sometimes you don’t always get the appointment you want …
Participants also expressed frustration with the way appointments were rescheduled. They felt as though the physicians were not concerned about their lives outside of office visits.
Patient … patients actually have lives. Many of them have jobs or families or responsibilities.
Communication barriers
At the provider level, poor communication between health care providers and patients was perceived as a major impediment to the quality of care patients received. Both patients and caregivers emphasized the importance of open patient-provider interactions and that there was a lack of such open communications in many instances. There was concern regarding the way diagnoses or prognoses were relayed to patients. Many times, physicians were insensitive and disregarded the sentiments of the patients and caregivers when delivering news about the patients’ condition, as one caregiver shared,
Caregiver … the pulmonary man came … in the room and said, ‘Oh, don’t worry about your lungs. Something else will get you first,’ which was a very, very bad thing to say.
Participants also expressed concerns that they were not properly prepared for treatments by their physicians because vital information was not discussed. They felt as if physicians were not realistic about potential outcomes. This resulted in patients and caregivers being too optimistic and later disappointed when the outcome was not what they had originally expected.
Patient Until I got to this office, I was totally oversold on everything. I was told surgery … robotic, not invasive. Day one, surgery. Day two, tubes out. Day three, go home. I expected to be home on Sunday night, stir-frying vegetables, and making dinner, feeding my cat. I was in ICU four days … I went home with oxygen. I mean I thought I was just gonna walk outta there…. You take a little thing out and you put a Band-Aid on, and you go home.
Data also revealed that patients were unsure of their condition, even following treatment. Information was not communicated to patients about the specifics of their disease, either because of miscommunication or minimal patient-provider time spent during office visits. This lack of communication between patients and providers often left patients and caregivers uncertain about exactly what condition they had or what they were being treated for.
Patient I just can’t have the time with Dr. xx, cuz he’s so busy...
Patient … I didn’t understand. Which exactly what type of cancer did I have, cuz I’m—really to tell you the truth—I’m still wondering.
Knowledge barriers
Patients and caregivers also identified a lack of education and knowledge about lung cancer diagnosis and treatment as a barrier to their care. Patients and caregivers were not always fully knowledgeable about lung cancer, treatment options, or the duration of treatments. They relied on the provider to disclose such information or direct them to credible sources. In many instances, patients were misinformed about the causes of lung cancer. There were misconceptions that lung cancer was only caused by a history of smoking or genetic predisposition. Patients who did not smoke or did not have a family history of lung cancer were often confused and dismayed by the diagnosis.
