• Brief Engagement and Acceptance Coaching for Community and Hospice Settings (the BEACHeS Study): Protocol for the development and pilot testing of an evidence-based psychological intervention to enhance wellbeing and aid transition into palliative care

      Norwood, Sabrina; Gillanders, David; Finucane, Anne; Spiller, Juliet; Strachan, Jenny; Millington, Sue; Swash, Brooke; Hulbert-Williams, Nicholas J.; University of Chester; University of Edinburgh; Marie Curie Hospice Edinburgh (BMC, 2019-08-20)
      Background: Cancer affects millions of individuals globally, with a mortality rate of over eight million people annually. Although palliative care is often provided outside of specialist services, many people require, at some point in their illness journey, support from specialist palliative care services, for example, those provided in hospice settings. This transition can be a time of uncertainty and fear and there is a need for effective interventions to meet the psychological and supportive care needs of people with cancer that cannot be cured. While Acceptance and Commitment Therapy (ACT) has been shown to be effective across diverse health problems, robust evidence for its effectiveness in palliative cancer populations is not extensive. Method: This mixed-methods study uses a single-case experimental design with embedded qualitative interviews to pilot test a novel intervention for this patient group. Between 14 and 20 patients will be recruited from two hospices in England and Scotland. Participants will receive five face-to-face manualised sessions with a psychological therapist. Sessions are structured around teaching core ACT skills (Openness, Awareness and Engagement) as a way to deal effectively with challenges of transition into specialist palliative care services. Outcome measures include: cancer-specific quality of life (primary outcome) and distress (secondary outcome), which are assessed alongside measures of psychological flexibility. Daily diary outcome assessments will be taken for key measures, alongside more detailed weekly self-report, through baseline, intervention and one-month follow-up phases. After follow-up, participants will be invited to take part in a qualitative interview to understand their experience of taking part, and acceptability and perceived effectiveness of the intervention and its components. Discussion: This study is the first investigation of using ACT with terminally ill patients at the beginning of their transition into palliative treatment. Using in-depth single-case approaches, we will refine and manualise intervention content by the close of the study for use in follow-up research trials. Our long-term goal is then to test the intervention as delivered by non-psychologist specialist palliative care practitioners thus broadening the potential relevance of the approach.
    • 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.
    • ‘Haematological cancers, they’re a funny bunch’: A qualitative study of Non-Hodgkin lymphoma patient experiences of unmet supportive care needs.

      Swash, Brooke; Hulbert-Williams, Nicholas J.; Bramwell, Ros; University of Chester; University of Cambridge (SAGE, 2016-07-28)
      Despite high levels of psychological distress, there is a scarcity of research on unmet supportive care needs in haematological cancer patients. This qualitative study used an in-depth interpretative phenomenological approach to investigate the needs reported by six Non-Hodgkin lymphoma patients and explored how these needs consequently shaped the patient experience. Emergent themes included: concerns for family, information needs and the need for psychological support. Participants reported feeling different to other cancer patients. Lack of understanding of their diagnosis by friends and family, and access to relevant support services, are notable unmet needs that differ from previous findings.
    • New paradigms for BRCA1/BRCA2 testing in women with ovarian cancer: results of the Genetic Testing in Epithelial Ovarian Cancer (GTEOC) study

      Plaskocinska, Inga; Shipman, Hannah; Drummond, James; Thompson, Edward; Buchanan, Vanessa; Newcombe, Barbara; Hodgkin, Charlotte; Barter, Elisa; Ridley, Paul; Ng, Rita; et al. (2016-05-12)
      Background: Over recent years genetic testing for germline mutations in BRCA1/BRCA2 has become more readily available because of technological advances and reducing costs. The Genetic Testing in Epithelial Ovarian Cancer (GTEOC) Study explored the feasibility and acceptability of offering genetic testing to all women recently diagnosed with epithelial ovarian cancer (EOC). Methods: From 1st July 2013 to 30th June 2015 women newly diagnosed with EOC were recruited through six sites in East Anglia, UK. Eligibility was irrespective of patient age and family history of cancer. The psychosocial arm of the study utilised self-report, psychometrically validated questionnaires (Depression Anxiety and Stress Scale, DASS-21; Impact of Event Scale, IES) and cost analysis was performed. Results: 232 women were recruited and 18 mutations were detected (12 in BRCA1, 6 in BRCA2) giving a mutation yield of 8% which increases to 12% in unselected women <70 years (17/146) and 1% in unselected women >70 years (1/86). IES and DASS-21 scores in response to genetic testing were significantly lower than equivalent scores in response to cancer diagnosis (p<.001). Correlation tests indicated that whilst older age is a protective factor against any traumatic impacts of genetic testing, no significant correlation exists between age and distress outcomes. Conclusion: The mutation yield in unselected women diagnosed with EOC from a heterogeneous population with no founder mutations was 8% in all ages and 12% in women under 70. Unselected genetic testing in women with EOC was acceptable to patients and is potentially less resource-intensive than current standard practice.
    • 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.
    • Psychological support for patients with cancer: evidence review and suggestions for future directions

      Hulbert-Williams, Nicholas J.; Beatty, Lisa; Dhillon, Haryana M.; University of Chester; Flinders University; University of Sydney (Lippincott, Williams & Wilkins, 2018-09-31)
      Purpose of the review. Psychological distress and mental health comorbidity are common in cancer. Various therapeutic frameworks have been used for interventions to improve psychological wellbeing and quality of life in cancer patients with mixed results. This paper reviews contributions to that literature published since January 2017. Recent findings. The majority of new psychological intervention research in cancer has used Cognitive Behavioural Therapy or Mindfulness-Based Interventions. Cognitive behavioural Therapy has been considered a gold-standard intervention and recent evidence justifies continuation of this. Recent reviews call into question the validity of evidence for Mindfulness- Based Interventions. A smaller number of trials using Acceptance and Commitment Therapy, Meta-Cognitive Therapy, Dignity Therapy and Coaching have emerged, and whilst findings are promising, additional fully-powered trials are required. Weaker evidence exists for counselling, support-based, and Narrative Therapy interventions. Summary. Efficacious, timely and acceptable psychological interventions are a necessary component of comprehensive cancer care. There is some way to go before the evidence conclusively points towards which interventions work for which cancer groups and for which specific outcomes. Methodological limitations must be addressed in future trials; at the forefront remains the need for fully-powered, head-to-head comparison trials.
    • Supporting cancer patients with anxiety

      Hulbert-Williams, Nicholas J.; University of Chester (Cogora Publications, 2016-02-09)
      Anxiety is very much a natural psychological response to the threat of cancer. It is important to understand the specific nature of anxiety to understand how best to support it. Although pharmacological treatments can be useful, psychological interventions may be more acceptable to patients, and more effective for longer-term anxiety management
    • 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.
    • Unmet psychosocial supportive care needs and psychological distress in haematological cancer survivors: The moderating role of psychological flexibility.

      Swash, Brooke; Bramwell, Ros; Hulbert-Williams, Nicholas J.; University of Chester; University of Cambridge; University of Chester; University of Chester (Elsevier, 2017-02-17)
      Background The period immediately after the end of cancer treatment is a time when supportive care for the cancer patient decreases; this is known to increase risk of psychological distress and poor wellbeing. While there is broad recognition that unmet psychological and supportive care needs correlate with psychological wellbeing, little is understood about the factors that influence this relationship. This study explores the role of psychological flexibility, with a particular focus on its potential moderating role between unmet needs and psychological distress in haematological cancer survivors. Materials and Method Haematological cancer survivors were recruited for this cross-sectional study through two major UK blood cancer charities. Participants (n=91) were all over the age of 16 and had been diagnosed with any sub-type of haematological cancer more than 18 months previously. Participants completed self-report questionnaires assessing unmet psychological and supportive care needs (SCNS SF34), anxiety and depression (HADS), quality of life (EORTC QLQ-C30) and psychological flexibility (AAQ II). Results High levels of both unmet need and distress were present in the sample, indicating on-going care needs for these cancer survivors. Statistically significant correlations between unmet needs, psychological flexibility and all outcome variables (anxiety, depression, quality of life) were found. Using regression analysis based on Hayes’ methodology (Hayes, 2013), psychological flexibility was found to act as a moderator between unmet need and distress in four out of 15 models; specifically, the statistical relationship between need and distress emerged only when levels of psychological flexibility were at average level or above. Discussion Haematological cancer survivors have on-going supportive care needs that persist well beyond the end of active treatment. Unmet needs can, in turn, increase levels of anxiety and depression, and reduce quality of life in this patient group. The understanding offered by our data that psychological flexibility plays a moderating relationship between need and psychological distress creates opportunities for the development of theoretically-informed interventions to reduce both unmet need and distress in cancer patients. As such, these findings support the growing emphasis on Acceptance and Commitment based interventions for cancer patients.
    • “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.