Barriers to Treating Patients With Small Cell Lung Cancer: Findings from a Survey of Patients and Providers

J Clin Pathways. 2023;9(3):E3-E4.

In 2022, the Association of Community Cancer Centers (ACCC) conducted patient and provider surveys to define the barriers faced by patients with small cell lung cancer (SCLC). The purpose of the surveys was to garner real-world insights into the factors that lead to poor symptom management and delayed diagnoses and treatment of patients with SCLC. These surveys collected responses from 100 providers and 51 patients; highlights are provided below.

• Patients reported they saw a median of three doctors for their symptoms prior to receiving their SCLC diagnosis.
• Providers reported that the top three contributors to a delay in SCLC diagnosis were time spent awaiting biopsy confirmation or pathology results, patient access to care, and scheduling delays, such as availability of office appointments.
• Providers reported that the major causes of significant delays in treatment were insurance approval, biopsy confirmation waiting time, and staging evaluation; clinic infusion availability was reported as a cause for delay in treatment.

Providers indicated that quality of life (QOL) was an important factor in treatment decisions. Most providers stated that the role of QOL in decision-making is dependent on disease staging and whether the treatment is considered curative or palliative. Pro­viders also noted that a shared decision-making approach was important, with consideration of the patient’s stated preferences and goals. Providers measured QOL primarily through discus­sions with their patient; a good QOL is considered to be the ability to continue activities of daily living or desired activities, achieve goals, and interact with family and friends.

In the patient survey, respondents indicated that their QOL could be improved with assistance during treatment in the following areas:

• Managing their pain or any other unwanted symptoms;
• Paying attention to their psychological well-being;
• Helping with logistical aspects of SCLC care, such as financial barriers and living situations; and
• Addressing their spiritual or existential suffering.

ACCC’s patient survey found that the most bothersome SCLC symptoms were persistent cough, loss of appetite, chest pain or discomfort, fatigue, difficulty breathing or wheezing, and hoarseness or difficulty speaking.

Overall, patients reported feeling that they make substantial contributions to final decisions regarding treatment selection. As survey findings suggest that caregivers provide an im­portant supportive role to patients with SCLC, inclusion of caregivers at patient visits should be strongly considered, and caregivers should be included in communication, education, and the decision-making process.

The ACCC survey found that advanced practice providers (APPs), nurses, and psychosocial support providers were more likely to offer education and information to patients, including explaining the diagnosis, answering questions, supplying educational handouts and trusted internet re­sources, and providing referrals to supportive care services. These data highlight the importance of APPs as part of the care team, as they are the primary team member who pro­vides patients with education and information about their diagnosis and treatment.

Physicians reported that they typically refer patients to palliative or supportive care at various stages during treat­ment, including after failure of multiple lines of therapy, upon first recurrence or refractory disease, at diagnosis, or when symptoms become difficult to manage or are uncon­trolled. APPs were more likely to refer their patients when symptoms became difficult to manage or after multiple lines of therapy. These data highlight an opportunity to improve patient care, as palliative care is recommended to be initiated at earlier stages of the disease. Barriers that limit referral to palliative care were most commonly patient resistance, lack of understanding of the value or focus of palliative care, and the capacity of palliative care services.

Over the past two decades, new and evolving advances in lung cancer screening and treatment modalities have provided inno­vative options for patients with SCLC, improving their over­all response rates and extending treatment response durations. However, given the complexity of care required for patients with SCLC, significant needs remain unmet.

The results from the provider and patient surveys identified several critical gaps in the management of SCLC, including barriers to access clinical trials and delayed referral to palliative and supportive care services. Additional areas of concern, as identified in other published studies and discussed by members of this project committee, include a need for earlier detection of SCLC when it is potentially curable, as well as the identifi­cation of new, more effective personalized therapies.

Specific recommendations from both the patient and pro­vider surveys include:

• Increase the referral rates to—and use of—palliative care and supportive services;
• Reduce barriers to clinical trial access;
• Educate providers on the tools and resources for assessing QOL and patient appropriateness for second- and subsequent-line therapies;
• Involve the patient’s and caregiver’s perspectives on care planning and treatment goals; and
• Develop and disseminate more print resources to multidisciplinary care teams to share with patients.