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Introduction: The brain is a frequent site of metastases in NSCLC, and screening for asymptomatic brain metastases (BM) is increasingly advised in NSCLC guidelines. An asymptomatic BM diagnosis may trigger anxiety for future neurologic problems and can negatively affect quality of life of patients and their relatives. Therefore, we performed this qualitative study. Methods: Three focus group discussions were organized with patients with NSCLC and asymptomatic BM (N = 3-4 per group) and separately with their relatives, to explore this psychosocial impact. Two researchers independently performed an inductive content analysis. Results: A total of 10 patients and 10 relatives participated in six focus groups. A diagnosis of BM caused feelings of distress and anxiety in both patients and relatives. These feelings diminished over time in case of a tumor responding to systemic therapy. The diagnosis of BM was not perceived as more distressful than other metastases, and scan-related anxiety was not experienced. Although magnetic resonance imaging screening and follow-up were thought of as burdensome, follow-up was valued. The coping strategies of both groups seemed related to personality and to the efficacy of the given systemic therapy. Relatives appreciated peer support of other relatives during the focus groups, and they seemed open for future psychological support. Conclusions: Asymptomatic BM diagnosis can cause anxiety and distress, but this diminishes over time with effective systemic treatment. Although patients perceive magnetic resonance imaging as burdensome, they value follow-up screening and imaging. Relatives highly appreciated peer support, and psychological distress of relatives should not be overlooked.
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OBJECTIVES: The COVID-19 pandemic caused a massive shift in the focus of healthcare. Such changes could have affected health status and mental health in vulnerable patient groups. We aimed to investigate whether patients with chronic pulmonary and cardiac diseases had experienced high levels of psychological distress during the COVID-19 pandemic in the Netherlands. DESIGN: A cross-sectional study. SETTING: COVID-19 pandemic-related changes in healthcare use, health status and psychological distress were investigated among patients with chronic obstructive pulmonary disease (COPD), pulmonary fibrosis (PF) and congestive heart failure (CHF), using an online nationwide survey. PARTICIPANTS: 680 patients completed the survey. COPD was the most often reported diagnosis 334 (49%), followed by congestive heart failure 219 (32%) and PF 44 (7%). There were 79 (12%) patients with primary diagnosis 'other' than chronic cardiopulmonary disease, who also completed this survey. INTERVENTIONS: Psychological distress was assessed via the DASS-21 score (Depression Anxiety Stress Scale). Moreover, specific worries and anxieties regarding COVID-19 were explored. RESULTS: The frequency of contact with healthcare professionals changed in 52%. Changes in treatment were reported in 52%. Deterioration in health status was self-reported in 39%. Moderate to extremely severe levels of depression, anxiety and stress was observed in 25.8%, 28.5% and 14%, respectively. Over 70% reported specific worries and anxieties, such as about their own health and fear of being alone. Both the deterioration in health status and increased levels of anxiety were significantly (p<0.001, p<0.006) associated with changes in treatment. Exploratory analyses indicated that lack of social support may further increase anxiety. CONCLUSION: Healthcare use changed during the COVID-19 pandemic in the Netherlands. It was associated with a decrease in health status, and increased psychological stress among patients with chronic cardiopulmonary disorders. Provision of healthcare should be more sensitive to the mental health needs of these patients during subsequent COVID-19 waves.