• 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.
    • Psychological flexibility correlates with patient-reported outcomes independent of clinical or sociodemographic characteristics

      Hulbert-Williams, Nicholas J.; Storey, Lesley (Springer, 2015-12-17)
      Purpose: The evidence for the effectiveness of psychological interventions for cancer patients is currently unclear. Acceptance and Commitment Therapy (ACT), which increases individual’s levels of psychological flexibility, may be more effective than other frameworks of psychological intervention, but good quality research is needed to inform adoption and implementation. This study explored the correlation between psychological flexibility and patient reported outcomes to assess the viability of this intervention for cancer survivors. Methods: Recruitment was co-ordinated through a regional cancer centre. 129 respondents completed a cross-sectional postal questionnaire. They were of mixed gender, diagnosis and cancer stage; a mean 61 years old; and a mean 207 days post-diagnosis. Self-report questionnaires assessed psychological flexibility, mood, anxiety, depression, stress, quality of life and benefit finding. Results: Psychological flexibility was a strong and consistent correlate of outcome; effects were maintained even when potentially confounding clinical and socio-demographic characteristics were controlled. Conclusions: Psychological flexibility can be modified through ACT-based interventions. Given the strong correlational evidence found in this study, it seems that such interventions might be useful for cancer survivors. High quality and well-designed controlled trials are now needed to establish effectiveness.
    • A systematic review of psychotherapeutic interventions for women with metastatic breast cancer: Context matters

      Beatty, Lisa; Kemp, Emma; Butow, Phyllis N.; Girgis, Afaf; Schofield, Penelope; Turner, Jane; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Koczwara, Bogda (Wiley-Blackwell, 2017-05-16)
      Objectives: To summarise the evidence-base of psychological interventions for women with metastatic breast cancer (MBC), by mode of delivery (group, individual, or low-intensity interventions). To synthesise data regarding core intervention-elements (e.g., intervention duration) and context factors (trial setting, uptake and adherence, demographic characteristics). Methods: Four databases were searched (inception – May 2016): MEDLINE (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCO), and SCOPUS; reference lists were examined for additional publications. Grey literature was excluded. Outcome data were extracted for survival, distress, quality of life, coping, sleep, fatigue, and/or pain, and summarised through narrative synthesis. Results: Fifteen randomised clinical trials (RCTs), reported across 23 articles, met inclusion criteria: seven group, four individual, and four low-intensity interventions. Overall, interventions improved distress (8/13 RCTs); coping (4/5 RCTs); and pain (4/5 RCTs). No evidence of survival benefit was found. For remaining outcomes, evidence was either insufficient, or too mixed to draw conclusions. Group programs had the strongest evidence-base for efficacy; individual and low-intensity therapy had insufficient evidence to form conclusions. Group interventions had longest intervention durations and lowest uptake and adherence; low-intensity interventions had shortest durations and highest uptake and adherence. Disparities in uptake, adherence and reach were evident, with the demographic profile of participants polarised to young, Caucasian, English-speaking, partnered women. Conclusions: There remains a paucity of psychological interventions for women with MBC. Those that exist have an inconsistent evidence-base across the range of patient-reported outcomes. Further research is needed to evaluate accessible delivery formats that ensure efficacy as well as uptake.
    • Universal BRCA1/BRCA2 testing for ovarian cancer patients is welcomed, but with care: How women and staff contextualise experiences of expanded access

      Shipman, Hannah; Flynn, Samantha; MacDonald-Smith, Carey; Brenton, James; Crawford, Robin; Tischkowitz, Marc; Hulbert-Williams, Nicholas J. (2017-05-24)
      Decreasing costs of genetic testing and advances in treatment for women with cancer with germline BRCA1/BRCA2 mutations have heralded more inclusive genetic testing programs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study, investigates the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (universal genetic testing or UGT). Study participants and staff were interviewed to: (i) assess the impact of UGT (ii) integrate patients’ and staff perspectives in the development of new UGT programs. Semi-structured interviews were conducted with twelve GTEOC Study participants and five members of staff involved in recruiting them. The transcripts were transcribed verbatim and analyzed using Interpretative Phenomenological Analysis. There are two super-ordinate themes: motivations and influences around offers of genetic testing and impacts of genetic testing in ovarian cancer patients. A major finding is that genetic testing is contextualized within the broader experiences of the women; the impact of UGT was minimized in comparison with the ovarian cancer diagnosis. Women who consent to UGT are motivated by altruism and by their relatives’ influence, whilst those who decline are often considered overwhelmed or fearful. Those without a genetic mutation are usually reassured by this result, whilst those with a genetic mutation must negotiate new uncertainties and responsibilities towards their families. Our findings suggest that UGT in this context is generally acceptable to women. However, the period shortly after diagnosis is a sensitive time and some women are emotionally overburdened. UGT is considered a ‘family affair’ and staff must acknowledge this.
    • “You don’t know what’s wrong with you”: An exploration of cancer-related experiences in people with an intellectual disability

      Flynn, Samantha; Hulbert-Williams, Nicholas J.; Hulbert-Williams, Lee; Bramwell, Ros; University of Chester (Wiley, 2016-08-02)
      Objective: Few empirical studies have explored cancer-related experiences of people with an intellectual disability (ID), despite rising cancer incidence in this population. The present research aims to better understand the experiences of this population from multiple perspectives, generating theory and further research questions. Methods: Six people with ID and cancer, alongside twelve participants from their supportive network (including: family, social and healthcare professionals), were interviewed; transcripts were analysed using grounded theory. Results: People with ID were often overlooked within cancer consultations, excluded from conversations about their care and treatment-related decisions. Caregivers (family and paid) were relied upon to facilitate communication, understanding and supplement healthcare professional knowledge. Caregivers’ attempts to protect the patient from distress harmed communication further; our interviewees suggest that increased involvement and empowerment mediated cancer-related distress. Where healthcare professionals possessed good patient-centred skills, and additional support was offered, people with ID were more likely to engage meaningfully in their cancer-related experience. Conclusions: Interestingly, emergent concepts were consistent with general psycho-oncology literature, however incidence and severity of difficulty was substantially greater in this sample. This disparity warrants further exploration, with a need for intervention research to develop effective ways of supporting healthcare professionals in enhancing patient-centred skills with this population. In the clinical setting, patient involvement in healthcare decisions (despite problems associated with co-morbidity) is imperative to optimise engagement.