• 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.
    • Building the capacity for psycho-oncology research: A survey of the research barriers and training needs within the International Psycho-Oncology Society (IPOS)

      Lambert, SD; Coumoundouros, C; Hulbert-Williams, NJ; Shaw, J; Schaffler, J; McGill University; University of Chester; University of Sydney (Wolters Kluwer, 2020-07-28)
      Background: The International Psycho-Oncology Society (IPOS) is a multidisciplinary professional network that aims to improve psychosocial care for individuals impacted by cancer. IPOS encourages research activity, recognising that a high-quality evidence-base is essential to provide best-practice, data-driven clinical care. This study aimed to determine the barriers to research involvement and the training needs and priorities of IPOS members, with the goal of facilitating the development of training resources tailored to the needs of IPOS members. Methods: A link to an online, cross-sectional survey was disseminated to all registered members of IPOS via email. The online survey platform SimpleSurvey was used, and questions included demographic characteristics and items related to research interests, involvement, and training needs. High priority research training needs were identified as research tasks respondents rated as highly important, yet possessed a low perceived skill level in. Results: 32% of IPOS members (n = 142) completed the survey. Participants represented 49 countries and were at a variety of career stages. Overall, participants reported spending an average of 17.3 hours per week on research (range = 0 to 80 hours per week), with 69% of respondents wanting to increase their research involvement. The main barriers to research participation included lack of research funding (80%) and lack of protected time (63%). IPOS members identified five high priority training needs: (1) preparing successful grant applications; (2) preparing research budgets; (3) community-based participatory research; (4) working with decision makers; and (5) finding collaborators or expert consultants. Participants suggested funding access, statistical advisors and networking and mentorship opportunities as ways to enhance research involvement. Members preferred online training modules (39%) and mentorship programs (19%) as methods by which IPOS could provide research support. IPOS was viewed as being able to contribute to many aspects of research capacity building such as networking, training, and dissemination of research findings. Conclusions: IPOS has an important role in encouraging research capacity building among members. This survey provides an agenda for workshops and training opportunities. Mainly, for respondents it was less about training in research methods and more about training in how to prepare successful grant applications, including budgets, and receiving mentorship on this as well as having opportunities to collaborate with other researchers.
    • 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.
    • Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses

      Flynn, Samantha; Hulbert-Williams, Lee; Bramwell, Ros; Stevens-Gill, Debbie; Hulbert-Williams, Nicholas J.; University of Chester and Institute of Psychology, Faculty of Education, Health and Wellbeing, University of Wolverhampton (Elsevier, 2015-05-08)
      Background: Caring for people with cancer or an intellectual disability (ID) is stressful: little is known about the combined impact of caring for cancer patients with an ID, though this is expected to be especially challenging. Method: Eighty-three nurses, working in oncology or a related field (i.e. palliative care) were recruited. Perceptions of caring for patients with and without an ID were measured, alongside potentially confounding information about participant demographic characteristics and perceived stress. Results: Participants felt less comfortable communicating with patients with an ID about their illness (F(1,82) = 59.52, p <0.001), more reliant on a caregiver for communication (F(1,82) = 26.29, p < 0.001), and less confident that the patient's needs would be identified (F(1,82) = 42.03, p < 0.001) and met (F(1,81) = 62.90, p < 0.001). Participants also believed that caring for this patient group would induce more stress, compared with patients without an ID (F(1,81) = 31.592, p < 0.001). Previous experience working with ID patient groups appears to mitigate some perceptions about providing care to this population. Conclusions: Caring for cancer patients with an ID may intensify this, already difficult, role. Through training and knowledge exchange, oncology nurse's confidence in communication, providing appropriate care, and positivity towards this patient group may be improved.
    • Patient-reported depression measures in cancer: a meta-review

      Wakefield, Claire E.; Butow, Phyllis N.; Aaronson, Neil A.; Hack, Thomas F.; Hulbert-Williams, Nicholas J.; Jacobsen, Paul B.; University of Chester (Lancet, 2015-07)
      It is unclear which patient-reported depression measures perform best in oncology settings. We conducted a meta-review to integrate the findings of reviews of more than 50 depression measures used in oncology. We searched Medline, PsycINFO, EMBASE and grey literature from 1999-2014 to identify 19 reviews representing 372 primary studies. Eleven reviews were rated as being of high quality. The Hospital Anxiety Depression Scale (HADS) was most thoroughly evaluated, but was limited by cut-point variability. The HADS had moderate screening utility indices and was least recommended in advanced cancer/palliative care. The Beck Depression Inventory was more generalizable across cancer types/disease stages, with good indices for screening and case finding. The Centre of Epidemiology-Depression Scale was the best-weighted measure in terms of responsiveness. This meta-review provides a comprehensive overview of the strengths and limitations of available depression measures. It can inform the choice of the best measure for specific settings and purposes.
    • 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.
    • Protocol for a systematic review of screening tools for fear of recurrent illness in common life threatening diseases

      Jones, Jenny; Kane, Paul; Polson, Rob; Leslie, Stephen J.; Hulbert-Williams, Nicholas J.; Simard, Sébastien; Ozakinci, Gozde; Hubbard, Gill; University of Plymouth ; University of Stirling ; Highland Health Sciences Library ; University of Stirling/Highland Heartbeat Centre ; University of Chester ; Hospital Laval, Québec ; University of St Andrews ; University of Stirling (BioMed Central, 2015-03-19)
      A myocardial infarction (MI) (‘heart attack’) can be intensely stressful, and the impact of this event can leave patients with clinically significant post-MI stress symptoms. Untreated stress can make heart disease worse. Few tools are available that screen for specific thoughts or beliefs that can trigger post-MI stress responses. In other life-threatening illnesses, fear of recurrence (FoR) of illness has been identified as a key stressor, and screening tools have been developed to identify this. The aim of this review is to identify FoR screening tools used in other common life-threatening diseases that report on the development of the tool, to assess if there are any that can be adapted for use in MI survivors so that those with high levels of FoR can be identified and helped.
    • 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.
    • Recruiting cancer survivors into research studies using online methods: a secondary analysis from an international cancer survivorship cohort study.

      Hulbert-Williams, Nicholas J.; Pendrous, Rosina; Hulbert-Williams, Lee; Swash, Brooke; University of Chester (ecancer Global Foundation, 2019-12-12)
      Recruiting participants into cancer survivorship research remains a significant challenge. Few studies have tested and compared the relative use of non-clinical online recruitment methods, especially in samples of adult cancer survivors. This paper reports on the feasibility of recruiting a representative cohort of cancer survivors using online social media. Two-hundred participants with a cancer diagnosis within the past 12 months were recruited via social media (Facebook, Twitter, Reddit) into a longitudinal questionnaire study. Different methods of online recruitment proved to be more effective than others over time. Paid Facebook boosting, Reddit posts, and Twitter adverts placed by existing cancer charities proved most helpful in reaching our recruitment target (contributing 27%, 22% and 32% respectively). Recruiting online achieved a more demographically and clinically representative sample for our study: our sample was younger, less heteronormative, including those with a range of clinical diagnoses, primary and recurrence illness, and patients who had both completed and were still receiving treatment. This was certainly not a quick method of sample recruitment but that could have been optimised by focussing only on the three most effective methods describe earlier. Whilst we found that online recruitment is significantly lower cost than traditional recruitment methods, and can reduce some biases, there still remains the potential for some biases (e.g. excluding much older participants) and ethical/methodological issues (e.g. excluding those without access to the internet). We outline our recruitment strategy, retention rates, and a cost breakdown in order to guide other researchers considering such methods for future research in cancer survivorship.
    • Relationships between unmet needs, depression and anxiety in non-advanced cancer patients

      Ferrari, Martina; Ripamonti, Carla I; Hulbert-Williams, Nicholas J.; Miccinesi, Guido; University of Chester; Fondazione IRCCS Istituto Nazionale dei Tumori, Milano, Italy; ISPO Clinical Epidemiology Unit, Florence, Italy (Wichtig Publishing, 2018-04-16)
      Introduction: In oncology settings, less attention is given to patients’ unmet need and to existential and emotional distress, compared to physical symptoms. We aimed to evaluate correlations between unmet needs and emotional distress (self-reported anxiety and depression) in a consecutive cohort of cancer patients. The influence of socio- demographic and clinical factors was also considered. Methods: Three hundred cancer patients recruited from an out-patient Supportive Care Unit of a Comprehensive Cancer Centre completed the Need Evaluation Questionnaire (NEQ) and the Edmonton Symptom Assessment System (ESAS). Unmet needs covered five distinct domains (informational, care/assistance, relational, psycho-emotional and material). Results: After removal of missing data, we analysed data from 258 patients. Need for better information on future health concerns (42%), better services from the hospital (43%), and to speak with individuals in the same condition (31%) were the most frequently reported as unmet. Based on the ESAS, 27.2% and 17.5% of patients respectively had a score of anxiety or depression > 3 and needed further examination for psychological distress. Female patients had significantly higher scores for anxiety (p<.001) and depression (p=.008) compared to males. Unmet needs were significantly correlated with both anxiety (rs=.283) and depression (rs=.284). Previous referral to a psychologist was significantly associated with depression scores (p=.015). Results were confirmed by multiple regression analysis. Conclusions: Screening for unmet needs whilst also considering socio-demographic and clinical factors, allows early identification of cancer patients with emotional distress. Doing so will enable optimal management of psychological patient-reported outcomes in oncology settings.
    • 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.
    • 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)
    • Unmet psychosocial needs in haematological cancer: A systematic review

      Swash, Brooke; Hulbert-Williams, Nicholas J.; Bramwell, Ros; University of Chester (Springer Verlag, 2014-01-25)
      A systematic review of key online databases and psycho-oncology journals was conducted to identify papers that formally assessed unmet psychosocial needs in adults with a diagnosis of haematological cancer.