• Evaluating the impact of COVID-19 on supportive care needs, psychological distress and 3 quality of life in UK cancer survivors and their support network.

      Hulbert-Williams, Nicholas J.; Leslie, Monica; Hulbert-Williams, Lee; Smith, Eilidh; Howells, Lesley; Pinato, David J; University of Chester; Maggie's Cancer Centres; Imperial College London
      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 wellbeing. Methods: 144 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=.049) and improved quality of life (p=.032) following pandemic onset, but support network participants reported reduced quality of life (p=.009), and non-significantly elevated anxiety, stress and depression. Conclusion: Psychological wellbeing 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 wellbeing and quality of life of people in their support and informal care networks.
    • OVPSYCH2: A randomized controlled trial of psychological support versus standard of care following chemotherapy for ovarian cancer

      Frangou, E; Bertelli, G; Love, S; Mackean, MJ; Glasspool, RM; Fotopoulou, C; Cook, A; Nicum, S; Lord, R; Ferguson, M; et al. (Elsevier, 2021-05-29)
      Background: Fear of disease progression (FOP) is a rational concern for women with Ovarian Cancer (OC) and depression is also common. To date there have been no randomized trials assessing the impact of psychological intervention on depression and FOP in this patient group. Patients and methods: Patients with primary or recurrent OC who had recently completed chemotherapy were eligible if they scored between 5 and 19 on the PHQ-9 depression and were randomized 1:1 to Intervention (3 standardized CBT-based sessions in the 6 -12 weeks post-chemotherapy) or Control (standard of care). PHQ-9, FOP-Q-SF, EORTC QLQ C30 and OV28 questionnaires were then completed every 3 months for up to 2 years. The primary endpoint was change in PHQ-9 at 3 months. Secondary endpoints were change in other scores at 3 months and all scores at later timepoints. Results: 182 patients registered; 107 were randomized; 54 to Intervention and 53 to Control; mean age 59 years; 75 (70%) had completed chemotherapy for primary and 32 (30%) for relapsed OC and 67 patients completed both baseline and 3-month questionnaires. Improvement in PHQ-9 was observed for patients in both study arms at three months compared to baseline but there was no significant difference in change between Intervention and Control. A significant improvement on FOP-Q-SF scores was seen in the Intervention arm, whereas for those in the Control arm FOP-Q-SF scores deteriorated at 3 months (intervention effect= -4.4 (-7.57,-1.22), p-value = 0.008). Conclusions: CBT-based psychological support provided after chemotherapy did not significantly alter the spontaneously improving trajectory of depression scores at three months but caused a significant improvement in FOP. Our findings call for the routine implementation of FOP support for ovarian cancer patients.
    • Unmet needs in young adults with a parent with chronic illness: a mixed method investigation and measure development study.

      Nicholls, Wendy; Patterson, Pandora; McDonald, Fiona; Hulbert-Williams, Nicholas J. (Wiley, 2016-05-10)
      Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed-methods: interviews in study one informed measure development in study two. Inclusion criteria were: having a parent with a chronic condition, and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16; 18.65, SD = 1.25). Main Outcome Measures: OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent’s condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately.