key: cord-0887625-cxgges53
authors: Hulbert‐Williams, Nicholas J.; Leslie, Monica; Hulbert‐Williams, Lee; Smith, Eilidh; Howells, Lesley; Pinato, David J.
title: Evaluating the impact of COVID‐19 on supportive care needs, psychological distress and quality of life in UK cancer survivors and their support network
date: 2021-03-25
journal: Eur J Cancer Care (Engl)
DOI: 10.1111/ecc.13442
sha: cbbe22fa200a28aebe59093dcb988dddc09e44e7
doc_id: 887625
cord_uid: cxgges53

OBJECTIVES: The COVID‐19 pandemic is having considerable impact on cancer care, including restricted access to hospital‐based care, treatment and psychosocial support. We investigated the impact on unmet needs and psychosocial well‐being. METHODS: One hundred and forty four participants (77% female), including people with cancer and their support networks, were recruited. The most prevalent diagnosis was breast cancer. Forty‐one participants recruited pre‐pandemic were compared with 103 participants recruited during the COVID‐19 pandemic. We measured participants' unmet supportive care needs, psychological distress and quality of life. RESULTS: Half of our patient respondents reported unexpected changes to treatment following pandemic onset, with widespread confusion about their longer‐term consequences. Although overall need levels have not increased, specific needs have changed in prominence. People with cancer reported significantly reduced anxiety (p = 0.049) and improved quality of life (p = 0.032) following pandemic onset, but support network participants reported reduced quality of life (p = 0.009), and non‐significantly elevated anxiety, stress and depression. CONCLUSION: Psychological well‐being of people with cancer has not been detrimentally affected by pandemic onset. Reliance on home‐based support to compensate for the lost availability of structured healthcare pathways may, however, explain significant and detrimental effects on the well‐being and quality of life of people in their support and informal care networks.

The COVID-19 pandemic has radically changed the management of cancer patients (Archer et al., 2020; Tsamakis et al., 2020) , a population with intrinsically higher lethality from SARS-Cov-2 infection (Pinato et al., 2020) . Social distancing, quarantine and lockdown measures have limited access not only to clinical care (Neal et al., 2020) but also to supportive and psychosocial care (Archer et al., 2020) . The social repercussions of such measures are unlikely to be short-lived (Young et al., 2020) and include a vast range of additional stressors (e.g. caring responsibilities and financial pressures) for both patients and their informal support networks (Nekhlyudoc et al., 2020) . Although clinical and psychosocial support are available via telehealth (Archer et al., 2020) and remote consultation, these technologies may not meet all patient needs effectively and require further evidence about their accessibility, acceptability and influence on patient outcomes (Neal et al., 2020) .

Psychosocially, COVID-19 is thought to contribute to uncertainty, isolation and loneliness in cancer patients Tsamakis et al., 2020) , and treatment delays correlate with exacerbated fear of progression, anxiety and depression (Chen et al., 2020) .

However, there is no systematic evidence to demonstrate this using patient-reported outcome data. In this UK-wide study, we hypothesised that the pandemic resulted in changed unmet needs, increased distress and poorer quality of life (QoL), in people affected by cancer.

This prospectively planned, cross-sectional study compared two samples of participants, recruited at two time points: June/July 2019 (pre-pandemic, n = 41) and June/July 2020 (during pandemic, n = 103). Eligible participants were people aged >16 years seeking cancer-related support (for their own diagnosis, or that of someone in their support networks) from UK-based Maggie's Cancer Centres.

Department of Psychology Ethics Committee in May 2019. The original aim of this prospective study was to track the unmet needs of cancer survivors engaging with charity-based cancer support services, and how these related to psychosocial well-being. A subsequent ethics amendment granted in April 2020 allowed us to add additional questions pertaining to COVID-19 and to build in a secondary research question to reflect the impact of the onset of the COVID-19 pandemic, as is reported in this paper.

The 2019 sample was recruited by an on-site researcher.

Following consent, participants completed paper-and-pen questionnaires. Because of social distancing, the 2020 sample was recruited through the Maggie's Online Centre and organisational-based social media adverts, with participants directed to a questionnaire hosted on JISC Online Surveys. Recruiting via social media has been demonstrated an effective way of recruiting cancer survivors; however, the nature of social media means that it is impossible to provide an accurate response rate as the baseline population rate is highly variable over time (Hulbert-Williams et al., 2019) .

Participants self-reported demographic and clinical information.

As primary study endpoints, we selected validated self-report questionnaires of psychosocial well-being. Patient unmet needs were assessed using the short form of the Supportive Care Needs Survey (SCNS-SF34; Boyes et al., 2009 ), a 34-item measure assessing unmet needs across five domains of care: health system and information; psychological; physical and daily living; patient care and support; and sexuality needs. The SCNS-SF34 has been validated in two separate samples of adult cancer patients (N = 888 and N = 250, respectively), representing a range of cancer sites (Boyes et al., 2009) . Support network unmet needs were assessed using the closely related Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C; Girgis et al., 2011) , a 44-item measure of four domains of unmet needs: healthcare service needs; psychological and emotional needs; work and social needs; and information needs. The SCNS-P&C has previously been validated in a sample of 547 caregivers of patients living with colorectal, breast, prostate, lung, or head and neck cancer, leukaemia, non-Hodgkin's lymphoma or melanoma (Girgis et al., 2011) . Higher scores on both versions of the SCNS indicate greater unmet needs (Boyes et al., 2009; Girgis et al., 2011) .

Patients' QoL was assessed using the Functional Assessment of Cancer Therapy-General (FACT-G; Cella et al., 1993) , a 33-item assessment of physical, social/family, emotional and functional cancerrelated well-being over the previous seven-day period. The FACT-G has previously been validated in a sample of 545 patients with a range of cancer diagnoses (Cella et al., 1993) . We used the Caregiver Oncology Quality of Life questionnaire (CarGOQoL; Minaya et al., 2012) to assess QoL in support network participants. This 29-item measure indicates ten 10 dimensions of QoL including psychological well-being; burden; relationship with health care; administration and finance; coping; physical well-being; self-esteem; leisure time; social support; and private life. The CarGOQoL has previously been vali- 

Variables were calculated following standard test scoring guidelines. Missing data were not imputed. We report difference in mean unmet need scores at domain level, and change in mean ranking of individual needs items. We used ANOVA with Cohen's d effect size estimates and Reliable Change Indices (RCIs) to explore differences in distress and QoL. 

At domain level, patient needs were slightly lower after pandemic onset, but only the difference in 'Physical and Daily Living Needs' was significant (p = 0.001). Support network participants' needs remained stable, with the exception of healthcare needs which were non-significantly elevated after pandemic onset ( Table 2) . (Table 3) . 

Patients' anxiety was significantly lower after pandemic onset (p = 0.049), stress reduced slightly though non-significantly, and depression remained the same. Overall QoL was significantly improved Anxiety, depression and stress were all higher for support network participants after pandemic onset, with depression approaching statistical significance (p = 0.055). Differences in anxiety were associated with a small effect size (d = 0.37), differences in depression were associated with a large effect size (d = 0.96) and differences in stress were associated with a medium effect size (d = 0.76).

Mean differences must be greater than the Reliable Change Index Exploring your spiritual beliefs.

Psychological and Emotional 10 Worry that the results of treatment are beyond your control.

Psychological 38 Getting emotional support for your loved ones. Overall QoL was significantly reduced for this sample (p = 0.009).

Additionally, health care, coping, self-esteem, leisure and social support sub-scales all demonstrated significant and large effect size differences (Table 2) . .

Four of the top five most increased patient needs related to hospital care and access, reflecting the consequences of reduced faceto-face hospital attendance in view of SARS-Cov-2 transmission risk (Tsamakis et al., 2020) . Interestingly, support networks reported high unmet needs related to care co-ordination and treatment decisionmaking involvement, highlighting the broad-reaching consequences stemming from the discouragement of active hospital attendance.

Building on a number of non-empirical, commentary and opinion articles, this is the first systematic comparison of the impact of COVID-19 on psychosocial outcomes in people affected by cancer. Though novel and multi-centre, there are design limitations:

cross-sectional studies lack sophistication, sample size is modest, and our 2020 sample had longer engagement with the Maggie's psychosocial support programme. Given that there were some clinical and demographic differences between these two cohorts, we cannot exclude the possibility that observed differences may be explained by factors unrelated to the pandemic. Some demographic and clinical groups were over-represented in both of our samples which may limit the generalisability of our findings to other populations. The small number of support network participants limits statistical power, however, the medium-to-large effect sizes point to potentially clinically meaningful findings.

In conclusion, our study shows that the pandemic has led to readjustment of unmet needs across diverse domains of psychosocial well-being. Despite not reporting poorer distress and QoL, cancer patients may be relying more on their own support networks to compensate for the lost availability of structured healthcare pathways. As social distancing and telemedicine continue to be promoted as public health strategies to protect the most vulnerable from COVID-19, interventions to support cancer patients' reorganised unmet needs and to address increased carer burden must be prioritised.

The authors wish to acknowledge staff at the Maggie's Merseyside, 

An anonymised data set is available by contacting the corresponding author.

Nicholas J. Hulbert-Williams https://orcid. org/0000-0001-9041-5485

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Evaluating the impact of COVID-19 on supportive care needs, psychological distress and quality of life in UK cancer survivors and their support network