Psychological Distress and Stigma for People with Lung Cancer: Time to Act

Psychological Distress and Stigma for People with Lung Cancer: Time to Act

The heightened psychological distress associated with lung cancer is well acknowledged with prevalence rates of up to 62% for clinically significant distress reported. 1 Major depression prevalence rates are significantly higher for lung cancer patients compared to people with other primary cancers and most do not receive potentially effective treatments for this depression.2 This lack of care not only compromises quality of life and well-being, but may also negatively impact survival, treatment adherence, and the ability to comply with supportive care recommendations, such as smoking cessation and adequate nutrition and physical activity.3 Related to this, health-related and iatrogenic stigma is well described as part of the patient experience of lung cancer. Stigma about a lung cancer diagnosis and the associated feelings of shame and guilt are associated with increased psychological distress and likely impede help seeking, again potentially blocking uptake of supportive care.4 Oncology treatment guidelines therefore play a potentially important role in legitimising psychological care as a clinical priority, and within this understanding and addressing the issue of stigma. Parallel to this, is the need to have patient or consumer involvement in such guidelines as a method of ensuring those issues important to patients, such as psychosocial care and stigma, are considered. Indeed it is arguable that consumer involvement should be at the heart of supportive care guidelines to ensure that health care interventions are salient to the group they seek to serve. Historically it is consumers, cancer patients and survivors, who have placed supportive care needs on the table and asked that this be addressed in oncology care. De Ruysscher et al have highlighted the need for supportive care for people with Stage III non-small-cell lung cancer (NSCLC) who are undergoing concurrent chemotherapy and radiotherapy (CCRT). 5 The morbidities associated with CCRT are well described and considerable. It is however problematic that this review, guided by the European Society for Therapeutic Radiology and Oncology (ESTRO) and the European Society of Medical Oncology (ESMO), did not include a recommendation for psychological care, screening for distress or referral to evidence-based intervention is not included, nor is the importance of stigma addressed. In addition, in this expert panel review consumer input is absent.6 There are models and approaches for developing care frameworks and guidelines in other cancer types that are likely suitable for consideration in the context of lung cancer. In the area of prostate cancer survivorship, a unique alliance of 47 leading clinical, nursing and allied health groups and agencies and consumer groups in Australia and New Zealand came together in a policy Delphi activity to produce a Cancer Survivorship Essentials Framework that includes six domains: Health Promotion and Advocacy; Shared Management; Vigilance; Personal Agency; Care Coordination and Evidence-based Survivorship Interventions.7 Within this framework the perspective of the patient is prioritised, with personal empowerment, information provision and shared decision making, effective care coordination, and symptom management mandated. This framework and methodology could be adapted or incorporated to the benefit of those affected by lung cancer, and those who care deeply about this patient cohort and in so doing broaden the perspective to include the importance psychological care and of stigma. We propose three elements for action on psychological care for people with lung cancer and action on stigma. First, recognition and inclusion of the consumer voice in all deliberations. Second, including psychological health and wellbeing as a vital sign for people with lung cancer, not an optional extra, and being transparent about the influence of stigma.8 Third, building on and applying the evidence-base we already have towards this problem and moving to implementation. It is time to act.

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