Allan ‘Ben’ Smith

Sharing vs. caring—The relative impact of sharing decisions versus managing emotions on patient outcomes

OBJECTIVE To assess the relative impact of cognitive and emotional aspects of shared decision making (SDM) on patient outcomes. METHODS Cognitive and emotional aspects of SDM in consultations between 20 oncologists and 55 early breast cancer patients were coded using the Observing Patient Involvement (OPTION) scale and the Response to Emotional Cues and Concerns (RECC) coding system, plus blocking and facilitating behaviour scales. Patient outcomes including anxiety, decisional conflict, and satisfaction with: (i) the decision, (ii) the consultation, and (iii) doctor SDM skills, were assessed. Relationships between cognitive and emotional aspects of SDM, and patient outcomes were examined using hierarchical regression. RESULTS The OPTION score predicted satisfaction with doctor SDM skills 2 weeks post-consultation (p=.010), and with the treatment decision 4 months post-consultation (p=.004). Emotional blocking predicted decisional conflict (p=.039), while the number of emotional cues emitted (p=.003), and the degree of empathy provided (p=.011), predicted post-consultation anxiety. CONCLUSION Cognitive and emotional aspects of SDM in oncology consultations have different effects on various patient outcomes. PRACTICE IMPLICATIONS It is important that doctors focus on both sharing decisions and managing emotions in consultations. Communication skills training addressing both these areas may be an effective way to improve diverse patient outcomes.

Improving decision making about clinical trial participation – a randomised controlled trial of a decision aid for women considering participation in the IBIS-II breast cancer prevention trial

Background:Decision aids may improve informed consent in clinical trial recruitment, but have not been evaluated in this context. This study investigated whether decision aids (DAs) can reduce decisional difficulties among women considering participation in the International Breast Cancer Intervention Study-II (IBIS-II) trial.Methods:The IBIS-II trial investigated breast cancer prevention with anastrazole in two cohorts: women with increased risk (Prevention), and women treated for ductal carcinoma in situ (DCIS). Australia, New Zealand and United Kingdom participants were randomised to receive a DA (DA group) or standard trial consent materials (control group). Questionnaires were completed after deciding about participation in IBIS-II (post decision) and 3 months later (follow-up).Results:Data from 112 Prevention and 34 DCIS participants were analysed post decision (73 DA; 73 control); 95 Prevention and 24 DCIS participants were analysed at follow-up (58 DA; 61 control). There was no effect on the primary outcome of decisional conflict. The DCIS–DA group had higher knowledge post decision, and the Prevention-DA group had lower decisional regret at follow-up.Conclusions:This was the first study to evaluate a DA in the clinical trial setting. The results suggest DAs can potentially increase knowledge and reduce decisional regret about clinical trial participation.

Fear of cancer recurrence: a theoretical review and novel cognitive processing formulation

PurposeFear of cancer recurrence (FCR) is prevalent among survivors. However, a comprehensive and universally accepted theoretical framework of FCR to guide intervention is lacking. This paper reviews theoretical frameworks previously used to explain FCR and describes the formulation of a novel theoretical framework for FCR.MethodsA systematic review of the literature was undertaken to identify conceptual frameworks or theories applied to FCR. MEDLINE, PubMED, CINAHL, AMED, PsycINFO and Web of Science were searched. Identified conceptual frameworks were reviewed for strength of evidence supporting their validity.ResultsOf 558 papers initially identified, 16 made reference to six different conceptual frameworks relating to FCR. The most comprehensive and evidence-based theoretical approach is the Common Sense Model (CSM). Other approaches have limited evidence supporting their application to FCR. Two theoretical approaches developed in the context of emotional disorders that appear to be highly relevant to FCR: the Self-Regulatory Executive Function (S-REF) model and Relational Frame Theory were combined with the CSM to produce a novel cognitive processing account of FCR.ConclusionsFew conceptual frameworks have been used consistently to guide FCR research, and not all frameworks are empirically well supported, suggesting that further discussion regarding the conceptualisation of FCR is needed. The novel theoretical framework for FCR presented highlights the multidimensional nature of FCR and the importance of cognitive processing and metacognitions in the development and maintenance of FCR.Implications for Cancer SurvivorsThe novel theoretical formulation of FCR outlined here provides a much-needed comprehensive framework to further investigate and address FCR in cancer survivors.

The prevalence and correlates of supportive care needs in testicular cancer survivors: a cross‐sectional study

This cross‐sectional study aimed to identify the prevalence and correlates of supportive care needs in testicular cancer (TC) survivors.

The sum of all fears: conceptual challenges with measuring fear of cancer recurrence

Fear of cancer recurrence (FCR) is increasingly recognised as a major concern for people with cancer once active treatment is completed. Several instruments have been designed to assess FCR; however, no gold standard has emerged. Many instruments conceptualise FCR as a multidimensional construct. However, this potentially conflates FCR as an outcome with its antecedents and consequences. This is problematic when an aggregate of distinct dimensions is calculated, as is commonly recommended. For example, the total score on the Fear of Cancer Recurrence Inventory is an aggregate of items from seven sub-scales: triggers, severity, psychological distress, coping strategies, functioning impairments, insight and reassurance. Similarly, the total score on the Fear of Progression Questionnaire is an aggregate of affective reaction, partnership/family, work and loss of autonomy. Arguably, the severity and affective reaction domains represent fear, and the other sub-scales represent related concepts, rather than “dimensions” of FCR. The total score represents a combination of concepts whose meaning is unclear. The same total score could be produced by patients with very different experiences, and patients with the same level of fear could have very different total scores. Therefore, we argue that although the level of FCR may be determined by a complex network of antecedents and modifiers and have variable consequences, FCR itself may be a simple concept, which can be assessed using a smaller number of items. Conceptual clarity in its research infancy should prevent FCR becoming a construct that is vaguely operationalised and interpreted.

Discussing Complementary Therapy Use With Early-Stage Breast Cancer Patients: Exploring the Communication Gap

Objective. The current study aimed to (1) describe communication patterns between oncologists and breast cancer patients regarding the use of complementary and alternative medicine (CAM) and (2) assess the relationship between CAM discussions and anxiety levels. Methods. Interaction analysis of audiotaped initial consultations of 102 early-stage breast cancer patients with Australian and New Zealand oncologists was carried out. Preconsultation and postconsultation anxiety levels were assessed using the State-Trait Anxiety Inventory. Results. At least 1 instance of CAM discussion was found in 24 of the 102 consultations (24%). CAM discussions were mainly patient initiated (73%). The most common doctor’s response to a patient’s mention of CAM was encouragement (38%), although 23% of CAM references elicited a discouraging comment, and 20% were ignored. No patient demographics were significantly associated with CAM discussion. Patients who discussed CAM reported higher preconsultation and postconsultation anxiety levels than those who did not discuss CAM. Conclusions. CAM discussions during initial consultations between early-stage breast cancer patients and oncologists appear to be limited and linked with higher patient anxiety before and after the consultation. These findings indicate that doctors require further education about CAM therapies and supplements as well as guidance in how to raise and effectively discuss CAM issues with concern for their safety while balancing respect for the patients’ beliefs.

A comparison of data quality and practicality of online versus postal questionnaires in a sample of testicular cancer survivors

We aimed to compare data quality from online and postal questionnaires and to evaluate the practicality of these different questionnaire modes in a cancer sample.

Pilot of a theoretically grounded psychologist-delivered intervention for fear of cancer recurrence (Conquer Fear)

Dear Editor,IntroductionFear of cancer recurrence (FCR), defined as the fear orworry that cancer could return or progress in the sameplace or another part of the body [1], is a commonand debilitating problem among cancer survivors. A re-cent systematic review found that across different cancersites and assessment strategies, the following on aver-age: 73% of cancer survivors report some degree ofFCR (range=39–97%); 49% report moderate to highFCR (range=22–87%); and 7% report high FCR(range=0–15%) [2]. FCR is stable over time and hasbeen shown to impact negatively on quality of life(QOL), psychological adjustment, emotional distressand anxiety, ability to establish future plans and carerQOL [2]. High FCR has also been associated withgreater medical service usage and costs [2]. Despitethe high prevalence, morbidity and potential cost ofFCR, survivors commonly report strong unmet needsfor help managing FCR [2]. This suggests many cancerservices are currently providing inadequate care in thisarea. Indeed, clinicians in psycho-oncology report diffi-culties dealing with high FCR [3]. There is a clear needfor interventions specifically targeting FCR, but veryfew have been developed and evaluated to date [4–6].This paper reports on the pilot testing of a novel, theo-retically based intervention for FCR.MethodsInterventionThe manualised intervention (Conquer Fear) aims to re-duce the impact of FCR and is based on the common-sense model (CSM) of illness [7], self-regulatory execu-tive function (S-REF) model [8] and Relational FrameTheory (RFT) [9]. Key intervention objectives includethe following: (a) teaching strategies for controllingworry and excessive threat monitoring (S-REF), (b)modifying unhelpful beliefs about worry (S-REF), (c)developing appropriate monitoring and screeningbehaviours (CSM), (d) providing information aboutfollow-up care and empirically supported behaviouralchange (e.g. weight loss and exercise) to reduce riskof recurrence (CSM), (e) addressing cancer-related exis-tential changes (RFT), and (f) promoting values-basedgoal-setting (RFT). The intervention comprises five60–90 min, individual face-to-face sessions with atrained psychologist/psychiatrist (therapist). Home-basedpractice and reading (≈2 h/week) is encouraged to con-solidate skills. See Table 1 for an overview of sessioncontent. More details are provided in Butow et al. [10].Study designThe feasibility, acceptability and likely efficacy ofConquer Fear were evaluated in a small longitudinalsingle-arm pilot study approved by relevant local ethicscommittees.

Randomized Trial of ConquerFear: A Novel, Theoretically Based Psychosocial Intervention for Fear of Cancer Recurrence

Purpose Fear of cancer recurrence (FCR) is prevalent, distressing, and long lasting. This study evaluated the impact of a theoretically/empirically based intervention (ConquerFear) on FCR. Methods Eligible survivors had curable breast or colorectal cancer or melanoma, had completed treatment (not including endocrine therapy) 2 months to 5 years previously, were age > 18 years, and had scores above the clinical cutoff on the FCR Inventory (FCRI) severity subscale at screening. Participants were randomly assigned at a one-to-one ratio to either five face-to-face sessions of ConquerFear (attention training, metacognitions, acceptance/mindfulness, screening behavior, and values-based goal setting) or an attention control (Taking-it-Easy relaxation therapy). Participants completed questionnaires at baseline (T0), immediately post-therapy (T1), and 3 (T2) and 6 months (T3) later. The primary outcome was FCRI total score. Results Of 704 potentially eligible survivors from 17 sites and two online databases, 533 were contactable, of whom 222 (42%) consented; 121 were randomly assigned to intervention and 101 to control. Study arms were equivalent at baseline on all measured characteristics. ConquerFear participants had clinically and statistically greater improvements than control participants from T0 to T1 on FCRI total ( P < .001) and severity subscale scores ( P = .001), which were maintained at T2 ( P = .017 and P = .023, respectively) and, for FCRI total only, at T3 ( P = .018), and from T0 to T1 on three FCRI subscales (coping, psychological distress, and triggers) as well as in general anxiety, cancer-specific distress (total), and mental quality of life and metacognitions (total). Differences in FCRI psychological distress and cancer-specific distress (total) remained significantly different at T3. Conclusion This randomized trial demonstrated efficacy of ConquerFear compared with attention control (Taking-it-Easy) in reduction of FCRI total scores immediately post-therapy and 3 and 6 months later and in many secondary outcomes immediately post-therapy. Cancer-specific distress (total) remained more improved at 3- and 6-month follow-up.

A systematic review of quantitative observational studies investigating psychological distress in testicular cancer survivors

Testicular cancer (TC) affects young men and may cause psychological distress despite a good prognosis. This systematic review evaluated the prevalence, severity, and correlates of anxiety, depression, fear of cancer recurrence (FCR), and distress in TC survivors.