Amy Din

Pre-surgery depression and confidence to manage problems predict recovery trajectories of health and wellbeing in the first two years following colorectal cancer: results from the CREW cohort study

Purpose This paper identifies predictors of recovery trajectories of quality of life (QoL), health status and personal wellbeing in the two years following colorectal cancer surgery. Methods 872 adults receiving curative intent surgery during November 2010 to March 2012. Questionnaires at baseline, 3, 9, 15, 24 months post-surgery assessed QoL, health status, wellbeing, confidence to manage illness-related problems (self-efficacy), social support, co-morbidities, socio-demographic, clinical and treatment characteristics. Group-based trajectory analyses identified distinct trajectories and predictors for QoL, health status and wellbeing. Results Four recovery trajectories were identified for each outcome. Groups 1 and 2 fared consistently well (scores above/within normal range); 70.5% of participants for QoL, 33.3% health status, 77.6% wellbeing. Group 3 had some problems (24.2% QoL, 59.3% health, 18.2% wellbeing); Group 4 fared consistently poorly (5.3% QoL, 7.4% health, 4.2% wellbeing). Higher pre-surgery depression and lower self-efficacy were significantly associated with poorer trajectories for all three outcomes after adjusting for other important predictors including disease characteristics, stoma, anxiety and social support. Conclusions Psychosocial factors including self-efficacy and depression before surgery predict recovery trajectories in QoL, health status and wellbeing following colorectal cancer treatment independent of treatment or disease characteristics. This has significant implications for colorectal cancer management as appropriate support may be improved by early intervention resulting in more positive recovery experiences.

Social support following diagnosis and treatment for colorectal cancer and associations with health‐related quality of life: Results from the UK ColoREctal Wellbeing (CREW) cohort study

Social support is acknowledged as important in cancer survivorship, but little is known about change in support after cancer diagnosis and factors associated with this, particularly in colorectal cancer. The CREW cohort study investigated social support up to 2 years following curative intent surgery for colorectal cancer.

Comorbidities are associated with poorer quality of life and functioning and worse symptoms in the 5 years following colorectal cancer surgery: Results from the ColoREctal Well-being (CREW) cohort study

More people are living with the consequences of cancer and comorbidity. We describe frequencies of comorbidities in a colorectal cancer cohort and associations with health and well‐being outcomes up to 5 years following surgery.

Measurement of motor evoked potential resting threshold and amplitude of proximal and distal arm muscles in healthy adults: a reliability study

Purpose Reliability of motor-evoked potential threshold and amplitude measurement of upper limb muscles is important when detecting changes in cortical excitability. The objective of this study was to investigate intra-rater, test–retest reliability and minimal detectable change of resting motor threshold and amplitude of a proximal and distal upper limb muscles, anterior deltoid and distal extensor digitorum communis in healthy adults. Method To measure motor-evoked potential responses, transcranial magnetic stimulation was interfaced with electromyography and neuronavigation equipment. Two measurements were conducted on day 1 and a third measurement three days later. Reliability was analysed using intraclass correlation coefficients. Results Twenty participants completed the study. Excellent intra-rater (intraclass correlation coefficient = 0.91 (extensor digitorum), 0.94 (anterior deltoid)) and good to excellent test–retest reliability (intraclass correlation coefficient = 0.69 (anterior deltoid), 0.84 (extensor digitorum)) was found for resting motor threshold. Minimal detectable change for resting motor threshold was found at 10.95% (extensor digitorum) and 16.35% (anterior deltoid) between first and third measurements. Motor-evoked potential amplitude of extensor digitorum communis had fair to good intra-rater (intraclass correlation coefficient = 0.50) and test–retest reliability (intraclass correlation coefficient = 0.65). Conclusions Our results suggest that resting motor threshold is a reliable neurophysiological measure even for proximal shoulder muscles. Future research should further explore the reliability of motor-evoked potential amplitude before integration into neurological rehabilitation.

Informing Adults with Back Pain about Placebo Effects: Randomized, Controlled Evaluation of a New Website with Potential to Improve Informed Consent in Clinical Research (Preprint)

Background Placebo effects and their underpinning mechanisms are increasingly well understood. However, this is poorly communicated to participants in placebo-controlled trials. For valid informed consent, participants should be informed about the potential benefits and risks of participating in placebo-controlled trials. Existing information leaflets often fail to describe the potential benefits and adverse effects associated with placebo allocation. This study tested the effects of a new website designed to inform patients about placebo effects (The Power of Placebos, PoP). PoP was designed using qualitative methods in combination with theory- and evidence-based approaches to ensure it was engaging, informative, and addressed patients’ concerns. Objective This study aimed to test the effects of PoP, compared with a control website, on people’s knowledge about placebo and the ability to make an informed choice about taking part in a placebo-controlled trial. Methods A total of 350 adults with back pain recruited from 26 general practices in Southern England participated in this Web-based study. Participants were randomly assigned to PoP (which presented scientifically accurate information about placebo effects in an engaging way) or a control website (based on existing information leaflets from UK trials). Participants self-completed Web-based pre- and postintervention questionnaire measures of knowledge about placebo effects and preintervention questionnaire measures of attitudes toward and intentions to participate in a placebo-controlled trial. The 2 primary outcomes were (1) knowledge and (2) informed choice to take part in a placebo-controlled trial (computed from knowledge, attitudes, and intentions). Results After viewing PoP, participants had significantly greater knowledge about placebos (mean 8.28 [SD 1.76]; n=158) than participants who viewed the control (mean 5.60 [SD 2.24]; n=174; F1,329=173.821; P<.001; η2=.346). Participants who viewed PoP were 3.16 times more likely than those who viewed the control to make an informed choice about placebos (χ21=36.5; P<.001). Conclusions In a sample of adults with back pain, PoP increased knowledge and rates of informed choice about placebos compared with a control website. PoP could be used to improve knowledge about placebo effects in back pain. After essential further development and testing in clinical trial settings, it could support informed consent in placebo-controlled trials.

Trajectories of quality of life, health status and personal wellbeing up to two years after curative intent treatment for colorectal cancer: results from the UK ColoREctal Wellbeing (CREW) cohort study

Background: It has been reported that a quarter of people diagnosed with cancer lack social support. Online cancer communities could provide this form of support. Sixty-one per cent of adults in the UK access social media every day and online cancer communities are rising in popularity. However, there is limited evidence about how people use online cancer communities, and how they may, or may not, support people affected by cancer. Aims: This study aims to explore experiences of people affected by cancer visiting online cancer communities. Methods: A qualitative study was conducted using a constructivist grounded theory approach. Data were generated through semi-structured interviews with people who had visited online cancer communities, including people diagnosed with cancer and their family members. Results: A core category was developed and labelled ‘navigating cancer using online communities’. Participants used support in communities to navigate challenges they faced with cancer. This produced three categories of experience in online communities. Firstly, the advice of community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants navigated a ‘journey through different online worlds’ to the most relevant and often hidden communities. Conclusions: Social support is prevalent in online communities, multifaceted and mobilises active self-management in cancer care. This theoretical framework can inform the development of existing online communities to suit the needs of people affected by cancer. Further research should consider online communities in interventions for cancer self-management.

The impact of primary colorectal cancer treatment on physical symptoms and functioning in the first two years: results from the colorectal well-being (CREW) cohort study

Background: It has been reported that a quarter of people diagnosed with cancer lack social support. Online cancer communities could provide this form of support. Sixty-one per cent of adults in the UK access social media every day and online cancer communities are rising in popularity. However, there is limited evidence about how people use online cancer communities, and how they may, or may not, support people affected by cancer. Aims: This study aims to explore experiences of people affected by cancer visiting online cancer communities. Methods: A qualitative study was conducted using a constructivist grounded theory approach. Data were generated through semi-structured interviews with people who had visited online cancer communities, including people diagnosed with cancer and their family members. Results: A core category was developed and labelled ‘navigating cancer using online communities’. Participants used support in communities to navigate challenges they faced with cancer. This produced three categories of experience in online communities. Firstly, the advice of community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants navigated a ‘journey through different online worlds’ to the most relevant and often hidden communities. Conclusions: Social support is prevalent in online communities, multifaceted and mobilises active self-management in cancer care. This theoretical framework can inform the development of existing online communities to suit the needs of people affected by cancer. Further research should consider online communities in interventions for cancer self-management.

Informing Patients About Placebo Effects: Using Evidence, Theory, and Qualitative Methods to Develop a New Website

Background According to established ethical principles and guidelines, patients in clinical trials should be fully informed about the interventions they might receive. However, information about placebo-controlled clinical trials typically focuses on the new intervention being tested and provides limited and at times misleading information about placebos. Objective We aimed to create an informative, scientifically accurate, and engaging website that could be used to improve understanding of placebo effects among patients who might be considering taking part in a placebo-controlled clinical trial. Methods Our approach drew on evidence-, theory-, and person-based intervention development. We used existing evidence and theory about placebo effects to develop content that was scientifically accurate. We used existing evidence and theory of health behavior to ensure our content would be communicated persuasively, to an audience who might currently be ignorant or misinformed about placebo effects. A qualitative ‘think aloud’ study was conducted in which 10 participants viewed prototypes of the website and spoke their thoughts out loud in the presence of a researcher. Results The website provides information about 10 key topics and uses text, evidence summaries, quizzes, audio clips of patients’ stories, and a short film to convey key messages. Comments from participants in the think aloud study highlighted occasional misunderstandings and off-putting/confusing features. These were addressed by modifying elements of content, style, and navigation to improve participants’ experiences of using the website. Conclusions We have developed an evidence-based website that incorporates theory-based techniques to inform members of the public about placebos and placebo effects. Qualitative research ensured our website was engaging and convincing for our target audience who might not perceive a need to learn about placebo effects. Before using the website in clinical trials, it is necessary to test its effects on key outcomes including patients’ knowledge and capacity for making informed choices about placebos.

Using psychological theory and qualitative methods to develop a new evidence-based website about acupuncture for back pain

Introduction Potential acupuncture patients seek out information about acupuncture from various sources including websites, many of which are unreliable. We aimed to create an informative, scientifically accurate and engaging website to educate patients about acupuncture for back pain and modify their beliefs in a way that might enhance its clinical effects. Methods We used psychological theory and techniques to design an evidence-based website, incorporating multimedia elements. We conducted qualitative “think aloud” audio-recorded interviews to elicit user views of the website. A convenience sample of ten participants (4 male; aged 21–64 years from the local community) looked at the website in the presence of a researcher and spoke their thoughts out loud. Comments were categorised by topic. Results The website comprises 11 main pages and addresses key topics of interest to potential acupuncture patients, including beneficial and adverse effects, mechanisms of action, safety, practicalities, and patients’ experiences of acupuncture. It provides information through text, evidence summaries and audio-clips of four patients’ stories and two acupuncturists’ descriptions of their practice, and three short films. Evidence from the think aloud study was used to identify opportunities to make the website more informative, engaging, and user-friendly. Conclusions Using a combination of psychological theory and qualitative interviews enabled us to produce a user-friendly, evidence-based website that is likely to change patients’ beliefs about acupuncture for back pain. Before using the website in clinical settings it is necessary to test its effects on key outcomes including patients’ beliefs and capacity for making informed choices about acupuncture.