• 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.
    • Development and usability testing of a web-based psychosocial intervention for women living with metastatic breast cancer: Finding My Way-Advanced

      Beatty, Lisa; Koczwara, Bogda; Butow, Phyllis; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J; Kaambwa, Billingsley; Kemp, Emma; Flinders University; Flinders Medical Centre; Sydney University; University of Queensland; University of New South Wales; Swinburne University of Technology; University of Chester (Springer, 2021-03-15)
      Purpose: Women living with metastatic breast cancer (MBC) face significant distress and unmet needs, yet few resources have been developed for this population. The current study aimed to develop and evaluate the usability of Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. Methods: FMW-A was co-designed through (a) adapting an efficacious online program for people with curatively treated cancer, and (b) receiving iterative rounds of input and feedback from a multidisciplinary co-design team including consumers, clinicians and academics. A think-aloud protocol was then implemented to test the usability of the resulting 6-module prototype, with women living with MBC accessing up to three modules with an interviewer sitting along-side. Participants were recruited until saturation of themes occurred. Data were analysed thematically. Results: Participants (n=8) were, on average, 65.3 years old, mostly partnered (n=5), retired (n=6), post-secondary school educated (n=6), with non-dependent children (n=7). Feedback fell into 6 themes. Positive feedback about FMW-A summarised the supportive and informative nature of the programme, supplemented by comments about broadly relatable content. However, one size clearly did not fit all: within themes, diverging experiences emerged regarding navigability, worksheets and layout. Participants noted that having/making time for the intervention would be important to program engagement. Conclusions: Usability testing indicated participants found content helpful and relatable, and identified significant pragmatic improvements to be made prior to further testing. Implications for cancer survivors: The development of FMW-A represents an important step in providing acceptable resources to support women living with MBC.
    • Internet use and preferences among women living with advanced breast cancer

      Kemp, Emma; Koczwara, Bogda; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Spence, Danielle; Vatandoust, Sina; Kichenadasse, Ganessan; et al. (Wiley, 2019-02-21)
      Despite high distress and unmet informational and psychosocial needs, and recommendations for development of advanced breast cancer (ABC)-specific resources, there remains a paucity of appropriate, accessible psychological interventions. This survey study examined internet use and preferences of women with ABC, to the gauge feasibility of providing an ABC- specific internet intervention. Most participants (83%) used the internet daily. Results indicated most women with ABC would find an ABC-specific internet intervention helpful, and that it would address gaps in current internet resources, including provision of strategies to manage treatment side effects and fear of cancer progression.
    • Online information and support needs of women with advanced breast cancer: A qualitative analysis

      Kemp, Emma; Koczwara, Bogda; Butow, Phyllis N.; Turner, Jane; Girgis, Afaf; Schofield, Penelope; Hulbert-Williams, Nicholas J.; Levesque, Janelle V.; Spence, Danielle; Vatandoust, Sina; et al. (Springer, 2018-04-24)
      Purpose: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face to face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. Methods: Women with ABC participated in telephone interviews about their information and support- seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. Results: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individuals circumstances and preferences. Conclusions: Adaptation of an existing online intervention for early stage cancer appears a promising avenue to address the information and support needs of women with ABC.
    • 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.