• 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.
    • Cancer Experiences in People with Intellectual Disabilities

      Hulbert-Williams, Nick; Hulbert-Williams, Lee; Bramwell, Ros; Flynn, Samantha (University of Chester, 2018-12-20)
      People with intellectual disabilities are increasingly being diagnosed with cancer due, in part, to increases in life expectancy for this population. Despite the growing number of people with cancer and intellectual disabilities, the cancer-related experiences of people with intellectual disabilities are under-researched. Person-centred approaches to research are needed to better understand the needs and psychosocial outcomes of people with cancer and intellectual disabilities. This thesis aims to better understand the cancer-related experiences of people with intellectual disabilities, and the impact on the people who support them. The thesis comprises four related studies: (1) a systematic review of psychosocial experiences of cancer in people with intellectual disabilities; (2) a qualitative study of cancer experiences in people with intellectual disabilities using thematic analysis informed by grounded theory; (3) a survey of UK oncology nurses’ attitudes and care perceptions towards people with intellectual disabilities; and (4) a feasibility study of an intervention to improve healthcare professionals’ perceptions of communicating with people with cancer and intellectual disabilities. Five themes emerged from the ten papers included in the systematic review: delayed diagnosis; information, communication, and understanding; negative psychological consequences; negative physical consequences; and social support. Six of the ten papers included data from the same ethnographic study of 13 people, highlighting a paucity of empirical research regarding the psychosocial cancer experiences of people with intellectual disabilities. The qualitative study indicated that people with intellectual disabilities were often excluded from conversations about their diagnosis, treatment, and ongoing care, and expressed confusion and anxiety about their cancer. Attempts to protect them from distress inhibited communication, but where additional support was offered, participants engaged more meaningfully in their experience and this should, therefore, be encouraged. In the qualitative study, oncology nurses were reported to be important figures in the care of patients with intellectual disabilities. The survey of oncology nurses highlighted that caring for cancer patients with intellectual disabilities may intensify their already difficult role; however, previous experience may ameliorate negative consequences. This sample identified their need for training about communicating with people with intellectual disabilities. The first three studies informed the development of a novel, brief, online, video-based intervention for healthcare professionals working with people with intellectual disabilities and cancer. The feasibility trial of this intervention indicated that there were problems with recruitment, high attrition, and intervention adherence. These problems were, most likely due to participants finding the content and delivery method to be unacceptable. It is clear that the intervention is not feasible in its current format, and that further theoretical and modelling work is needed before the intervention is feasibility tested again ahead of a definitive trial. This body of work has demonstrated that people with intellectual disabilities and cancer face multiple barriers to accessing cancer care, including informative and understandable communication with healthcare professionals. With appropriate support, psychological and physical outcomes can be improved for people with intellectual disabilities and cancer, but caring for people with cancer and intellectual disabilities can be challenging for paid and informal carers, and oncology staff. Difficulties with communication are bi-directional, and improving communication might be an appropriate first step to improving cancer experiences for this population, but developing effective interventions presents numerous feasibility challenges.
    • 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.
    • Specialist palliative and end-of-life care for patients with cancer and SARS-CoV-2 infection: a European perspective

      Soosaipillai, G; Wu, A; Dettorre, GM; Diamantis, J; Chester, J; Moss, C; Aguilar-Company, J; Bower, M; Sng, CCT; Salazar, R; et al. (Sage, 2021-09-02)
      Background: Specialist palliative care team (SPCT) involvement has been shown to improve symptom control and end-of-life care for patients with cancer, but little is known as to how these have been impacted by the COVID-19 pandemic. Here, we report SPCT involvement during the first wave of the pandemic and compare outcomes for patients with cancer who received and did not receive SPCT input from multiple European cancer centres. Methods: From the OnCovid repository (n=1,318), we analysed cancer patients aged ≥18 diagnosed with COVID-19 between 26th February and 22nd June 2020 who had complete specialist palliative care team (SPCT) data (SPCT+ referred; SPCT- not referred). Results: Of 555 eligible patients, 317 were male (57.1%), with a median age of 70 (IQR 20). At COVID-19 diagnosis, 44.7% were on anti-cancer therapy and 53.3% had >1 co-morbidity. 206 patients received SPCT input for symptom control (80.1%), psychological support (54.4%), and/or advance care planning (51%). SPCT+ patients had more DNACPR orders completed prior to (12.6% vs. 3.7%) and during admission (50% vs 22.1%, P<0.001), with more SPCT+ patients deemed suitable for treatment escalation (50% vs. 22.1%, P<0.001). SPCT involvement was associated with higher discharge rates from hospital for end-of-life care (9.7% vs. 0%, P<0.001). End-of-life anticipatory prescribing was higher in SPCT+ patients, with opioids (96.3% vs. 47.1%) and benzodiazepines (82.9% vs. 41.2%) being used frequently for symptom control. Conclusions: SPCT referral facilitated symptom control, emergency care and discharge planning, as well as high rates of referral for psychological support than previously reported. Our study highlighted the critical need of SPCT for patients with cancer during the pandemic and should inform service planning for this population.
    • 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.
    • The Unmet Psychosocial Needs of Haematological Cancer Patients and their Impact upon Psychological Wellbeing

      Swash, Brooke (University of Chester, 2015-01)
      Unmet psychosocial needs indicate a desire for additional support in cancer patients, having a direct clinical utility in directing the provision of supportive care. There is evidence in wider cancer groups that unmet needs relate to psychological wellbeing but this relationship has yet to be fully explored and factors that may explain or moderate this relationship yet to be examined. There has been little investigation of type or prevalence of unmet need in haematological cancer patients, however, haematological cancers are noteworthy for their high levels of associated distress. Understanding causality of distress is key to the effective implementation of supportive care services. This thesis aimed to highlight the unmet needs most relevant to haematological cancer patients and to explore their impact upon psychological wellbeing. This thesis comprises four interconnected research studies: a systematic review exploring existing knowledge of unmet needs; a qualitative exploration of patient experiences of unmet needs and their impact; a quantitative questionnaire study of unmet need and psychological wellbeing in newly diagnosed haematological cancer patients, placing a special emphasis on the difference between active treatment and watch and wait regimes; and, a second quantitative questionnaire study that explores unmet need, psychological wellbeing, and psychological flexibility as a potential moderator in their relationship in a sample of haematological cancer survivors. This thesis demonstrates a relationship between unmet need and psychological wellbeing in haematological cancer patients. Fear of recurrence, concerns about loved ones, being able to do the things you used to, and a need for information were all found to be of relevance. The qualitative study highlighted that patients feel that, as haematology patients, they are distinct from other cancer patients which impacts upon the perceived acceptability of support services and specific barriers to the accessing of support services are presented. Significant correlations between unmet need and key psychological outcomes such as anxiety, depression and quality of life were observed in both quantitative studies. In addition, the concept of psychological flexibility was found to moderate the relationship between unmet need and psychological wellbeing in haematological cancer survivors. This work has clear implications for both future research and clinical practice. Unmet needs assessment has the potential to be used as a screening tool for overall psychological wellbeing, a way to stratify and understand the specific causes of distress and poor quality of life for this patient group. In the UK, on-going support for cancer patients diminishes at the end of treatment, these findings suggest that further support is needed in order to meet the psychological needs of cancer survivors. Further research is needed to further explore the role of psychological flexibility in cancer-related distress: interventions that target psychological flexibility have the potential to improve both unmet need and distress.