ABSTRACT
The first cases of Covid-19 were detected in the UK in early March 2020, leading to the first of three national lockdowns on 23 March 2020. CLL patients were asked to isolate at home (to shield) with a consequent interruption in clinical visits and treatment. Clinicians became concerned about the well-being of their patients in these stressful circumstances and needed information to better inform their clinical decisions. This study describes what happened to the emotional and mental well-being of patients during this period, together with those who were admitted to the hospital with Covid, and indicates what changes are recommended as a result. Method: Three charities, Leukemia Care, CLL Support, and UKCLL Forum worked together to produce five surveys plus a continuous 6th survey of UK physicians which identified CLL Covid patients attending hospital. A total of 4630 patient replies were received. Eighty-nine percentage responded to more than one survey: Survey Date Responses 1 27.03.20 844 2 20.04.20 843 3 20.05.20 1076 4 13.11.20 818 5 31.03.21 1049 6 27.03.20-31.03.2127 centers 81 patients, The first three surveys were designed to assess how patients were coping at the start, one month in, and at the end of the first lockdown. The 4th assessed changed attitudes before the 3rd lockdown and the 5th covered Covid infections, vaccination, and attitudes to unlocking. Results: The average respondent age was 64.7 years (52% male, 48% female) with 22.3% living alone and 50.2% with only one other person. 41.7% of responders were retired. Fifty-nine percentage were treatment-naive on watch and wait with 20.6% on active treatment and 19.8% previously treated. Shielding (93.7% of CLL patients) was highly effective in preventing Covid infection with only 4.2% developing Covid infection and 1.1% requiring hospital admission whereas 42.4% of CLL Covid infected patients attending hospital were not shielding. However, shielding had many behavioral, emotional, and mental impacts with ∼15% of patients seeking professional psychological support (Table 1). Although 96% said they understood how to protect themselves only 72.6% planned to shield during the 3rd lockdown (40% upon medical advice, 20% did not receive a government shielding letter). The number requiring practical help, e.g. shopping, dropped to 40.4% by the 3rd lockdown but only 59.7% thought they could emotionally cope (4.6% not coping every day, 35.6% daily variation). Although there was a high level of patient satisfaction (75.2%) with the medical care received throughout the three lockdowns (1) 22.7% had their CLL treatment disrupted or suspended, (2) 47.8% stopped receiving IVIG, and (3) 24.5% felt their CLL progressed during lockdown (only 16.3% of these received treatments) Of those CLL patients admitted to hospital with Covid (Table 2), 53.1% were treatment naïve and 56.4% had hypogammaglobulinemia. The mortality rate was high (42.5%) compared to published hospital data with pre-existing comorbidities being significant (p-0.04). Despite, the vaccination uptake being phenomenally high (99.2%), 48.3% plan to continue shielding and continue extra anti-infective precautions reflecting an exceptionally large and ongoing need for mental and emotional support. Nearly half, (45.7%) of patients feel the government had not managed the pandemic well with 41.6% saying they hadn't adequately protected the vulnerable. Conclusions: The surveys progressively informed clinicians about the mental and physical condition of CLL patients during the three lockdowns and highlighted areas of concern, enabling changes in working practices, including improved remote appointments, (86% satisfaction), and the closer monitoring of anxious patients. (1) Disruption in treatment plans was shown and, where possible, adjustments were made. (satisfaction with care 75.2% during the first lockdown). (2) Patients with cancer were particularly exposed to social isolation and distance-limited medical care. (3) 59.9% of patients had treatment delayed. Future surveys will assess the impact of this. (4 Mortality in hospitalized patients was higher than previously reported. Over 50% of these patients did not shield vs. 93.4% for surveyed patients. In this group, there were limitations in assessing mortality. However, this data clearly shows the benefits of shielding. (5) Fifty-six percent of patients demand a choice in the mode of care they will receive in the future. (6) The surveys demonstrate the value of charities combining their resources for the benefit of patients and set a pattern for future cooperation, particularly in leading on surveys tackling clinical questions.