• The cancer care experiences of gay, lesbian and bisexual patients: A secondary analysis of data from the UK Cancer Patient Experience Survey.

      Hulbert-Williams, Nicholas J.; Plumpton, C.; Flowers, Paul; McHugh, Rhian; Neal, Richard; Semlyen, Joanna; Storey, Lesley; University of Chester; Bangor University; Glasgow Caledonian University; University of Leeds; University of East Anglia; Queen's University (Wiley, 2017-02-27)
      Understanding the effects of population diversity on cancer-related experiences is a priority in oncology care. Previous research demonstrates inequalities arising from variation in age, gender and ethnicity. Inequalities and sexual orientation remain underexplored. Here, we report, for the first time in the UK, a quantitative secondary analysis of the 2013 UK National Cancer Patient Experience Survey which contains 70 questions on specific aspects of care, and six on overall care experiences. 68,737 individuals responded, of whom 0.8% identified as lesbian, gay or bisexual. Controlling for age, gender and concurrent mental health comorbidity, logistic regression models applying post-estimate probability Wald tests explored response differences between heterosexual, bisexual and lesbian/gay respondents. Significant differences were found for 16 questions relating to: (a) a lack of patient-centred care and involvement in decision making, (b) a need for health professional training and revision of information resources to negate the effects of heteronormativity, and (c) evidence of substantial social isolation through cancer. These findings suggest a pattern of inequality, with less positive cancer experiences reported by lesbian, gay and (especially) bisexual respondents. Poor patient-professional communication and heteronormativity in the healthcare setting potentially explain many of the differences found. Social isolation is problematic for this group and warrants further exploration.
    • 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.
    • Factors Associated with Intentional and Unintentional Non-adherence to Adjuvant Endocrine Therapy Following Breast Cancer

      Brett, Jo; Fenlon, Deborah F.; Boulton, Mary; Hulbert-Williams, Nicholas J.; Walter, Fiona M.; Donnelly, Peter; Lavery, Bernadette; Morgan, Adrienne; Morris, Carolyn; Watson, Eila; et al. (Wiley, 2016-11-30)
      Adherence to adjuvant endocrine therapy (AET) following breast cancer is known to be sub-optimal despite its known efficacy in reducing recurrence and mortality. This study aims to investigate factors associated with non-adherence and inform the development of interventions to support women and promote adherence. A questionnaire survey to measure level of adherence, side effects experienced, beliefs about medicine, support received and socio-demographic details was sent to 292 women 2-4 years post breast cancer diagnosis. Differences between non-adherers and adherers to AET were explored, and factors associated with intentional and unintentional non-adherence are reported. Approximately one quarter of respondents, 46 (22%), were non-adherers, comprising 29 (14%) intentional non-adherers and 17 (8%) unintentional non-adherers. Factors significantly associated with intentional non-adherence were: the presence of side effects (p<0.03), greater concerns about AET (p<0.001), and a lower perceived necessity to take AET (p<0.001). Half of the sample (105/211) reported that side effects had a moderate or high impact on their quality of life. Factors associated with unintentional non-adherence were: younger age (<65), (p<0.001), post-secondary education (p=0.046), and paid employment (p=0.031). There are distinct differences between intentional non-adherence and unintentional non-adherence. Differentiation between the two types of non-adherence may help tailor support and advice interventions
    • Fear of cancer recurrence in oral and oropharyngeal cancer patients: An investigation of the clinical encounter

      Ozakinci, Gozde; Swash, Brooke; Humphris, Gerry; Rogers, Simon; Hulbert-Williams, Nicholas J.; University of St Andrews; University of Chester; Edge Hill University (Wiley-Blackwell, 2017-10-12)
      Fear of cancer recurrence (FCR) is common among individuals treated for cancer. Explorations of how this fear is expressed within an oncology setting and responded to are currently lacking. The aim was to investigate how head and neck cancer survivors in follow-up consultations express FCR, how a health care professional addresses recurrence fears, and examining how survivors experience this interaction. We recorded the follow-up consultations of those participants who have reported FCR as a concern on the Patient Concerns Inventory. We also conducted a follow-up phone interview with the participants. We analysed the transcripts using thematic analysis. Five men and six women were recruited, aged 55-87 (mean age = 64). Follow-up consultation analyses revealed that the consultant used ‘normalising FCR,’ ‘reassurance,’ and ‘offer of referral to a counsellor’. Interviews revealed themes around how they coped with FCR, relevance of personal history on FCR, and the impact of feeling gratitude towards the consultant on expression of FCR. Analyses indicate that patients may feel reluctant to raise their FCR with their clinician for fear of appearing ‘ungrateful’ or of damaging a relationship that is held in high esteem. Findings indicate the initiation of FCR with patients can be beneficial for patient support.
    • Psychological interventions for patients with cancer: Psychological flexibility and the potential utility of Acceptance and Commitment Therapy

      Hulbert-Williams, Nicholas J.; Storey, Lesley; Wilson, Kelly G.; University of Chester ; Queen’s University Belfast ; University of Mississippi; Department of Psychology; University of Chester; Chester UK; School of Psychology; Queen's University Belfast; Belfast UK; University of Mississippi; University MS USA (Wiley, 2014-08-06)
      Cancer is an illness affecting patients' physical and psychosocial well-being: high numbers report problematic levels of distress at many points through diagnosis, treatment and survivorship. Conclusive evidence for the long-term benefits of psychological interventions is lacking and this may be because (1) they employ a too limited scope of underlying therapeutic model; or (2) that they are too focused on improving psychopathological outcomes. Acceptance and Commitment Therapy (ACT) may add components not emphasised elsewhere and may provide a more suitable model of adjustment and coping. Following a comprehensive literature search a theoretical and conceptual discussion of the potential for ACT-based oncology interventions is presented.