• Beyond using composite measures to analyze the effect of unmet supportive care needs on caregivers’ anxiety and depression

      Lambert, Sylvie D.; Hulbert-Williams, Nicholas J.; Belzile, Eric; Ciampi, Antonio; Girgis, Afaf; McGill University; University of Chester; University of New South Wales (Wiley, 2018-03-06)
      Objective: Caregiver research has relied on composite measures (e.g., count) of unmet supportive care needs to determine relationships with anxiety and depression. Such composite measures assume that all unmet needs have a similar impact on outcomes. The purpose of this study is to identify individual unmet needs most associated with caregivers’ anxiety and depression. Methods: 219 Caregivers completed the 44-item Supportive Care Needs Survey and the Hospital Anxiety and Depression scale [minimal clinically important difference (MCID)=1.5] at 6-8 months, 1, 2, 3.5, and 5 years following the patients' cancer diagnosis. The list of needs was reduced using Partial Least Square regression and those with a Variance Importance in Projection > 1 were analyzed using Bayesian Model Averaging. Results: Across time, eight items remained in the top 10 based on prevalence and were labelled “core”. Three additional ones were labelled “frequent”, as they remained in the top 10 from 1- year onwards. Bayesian Model Averaging identified a maximum of four significant unmet needs per time point – all leading to a difference greater than the MCID. For depression, none of the core unmet needs were significant, rather significance was noted for frequent needs and needs that were not prevalent. For anxiety, 3/8 core and 3/3 frequent unmet needs were significant. Conclusions: Prevalent Those unmet needs that are most prevalent are not necessarily the most significant ones, and findings provide an evidence-based framework to guide the development of caregiver interventions. A broader contribution is proposing a different approach to identify significant unmet needs.
    • Cancer experiences in individuals with an intellectual disability: Results from a grounded theory study

      Flynn, Samantha; Hulbert-Williams, Nicholas J.; Hulbert-Williams, Lee; Bramwell, Ros; University of Chester (Wiley, 2015-04-28)
      Increasing numbers of people with an intellectual disability (ID) are diagnosed with cancer, partly due to increased life expectancy. However, there is a paucity of research exploring their cancer experiences.
    • Patient-reported outcomes of sexual and gender minority cancer survivors in Australia

      Lisy, Karolina; Ward, Andrew; Schofield, Penelope; Hulbert-Williams, Nicholas J.; Bishop, Jim; Jefford, Michael; Peter MacCallum Cancer Centre, Melbourne; The Social Research Centre, Melbourne; Swinburne University, Melbourne; University of Chester, UK; Victorian Comprehensive Cancer Centre, Melbourne; University of Melbourne (Wiley, 2018-12-03)
      Five key points: This is the first population‐based survey of Australian cancer survivors to include lesbian, gay, bisexual, transgender, or intersex (LGBTI) identity. Few respondents (1.6%) identified as LGBTI, less than half the reported prevalence in Australia. LGBTI respondents were more likely to be younger, employed, and born in Australia. LGBTI people may experience more problems with anxiety/depression, body image and financial benefits, and greater needs for diet and lifestyle information. Commonly used patient‐reported outcome measures may not be sensitive to LGBTI issues; areas for future enquiry are proposed.
    • The role of relationship attachment in psychological adjustment to cancer in patients and caregivers: A systematic review of the literature

      Nicholls, Wendy; Hulbert-Williams, Nicholas J.; Bramwell, Ros; University of Wolverhampton ; University of Chester ; University of Chester; Department of Psychology; University of Wolverhampton; Wolverhampton UK; Department of Psychology; University of Chester; Chester UK; Department of Psychology; University of Chester; Chester UK (Wiley, 2014-08-25)
      The objective of this works is to report the results of a systematic review to evaluate the role of attachment in adjustment to cancer for patients and those close to them.
    • 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 needs and their psychological impact in haematological cancer survivors

      Swash, Brooke; Bramwell, Ros; Hulbert-Williams, Nicholas J.; University of Chester (Wiley, 2015-04-28)
    • Using Drug Development Methodology to Improve Survivorship and Supportive Care Intervention Trials.

      Howells, Lesley; Hulbert-Williams, Nicholas J.; Blagden, Sarah P.; Maggie's Centres, London; University of Chester; University of Oxford (Wiley, 2019-05-20)
    • What are the experiences of cancer care in gay, lesbian and bisexual patients, and how do these differ from heterosexual cancer patients

      Hulbert-Williams, Nicholas J.; Plumpton, C.; McHugh, Rhian; Semlyen, Joanna; Flowers, Paul; Storey, Lesley; Rearn, Emma; Neal, Richard; University of Chester ; Bangor University ; University of Chester ; London Metropolitan University ; Glasgow Caledonian University ; Queen's University, Belfast ; King's College, London ; Bangor University (Wiley, 2015-04-28)
      Lesbian, gay and bisexual (LBG) people frequently experience inequality within healthcare, and are an underserved population in cancer research.
    • “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.