Individualised care for patients with breast or prostate cancer aided by an interactive app : a frame of process evaluation

Background: Patients receiving outpatient cancer treatment often experience distressing symptoms and unmet needs. Collecting patient-reported outcomes via apps (ePROs) facilitates patient-clinician communication regarding symptoms and is recommended in clinical guidelines. Previous studies of an interactive app (Interaktor) for individualised symptom management show reduced symptom burden for patients undergoing breast and prostate cancer treatment. Aim: To contribute to the knowledge of the value of implementing ePRO in clinical practice by studies framed as a process evaluation of an intervention for individualised symptom management assisted by Interaktor. Methods: Following the Medical Research Council framework for process evaluation of complex interventions, qualitative and quantitative data were collected along two randomised controlled trials (RCTs). Patients receiving neoadjuvant chemotherapy for breast cancer (N=149), and radiotherapy for prostate cancer (N=150) were randomised to standard care with or without intervention. Intervention group patients reported symptoms and concerns daily by questionnaire and free text. The app included selfcare advice and symptom history graphs. Oncology nurses responded to alerts triggered by severe symptoms. Study I investigates which and how patients engaged, by analysing adherence and usage predictors from logged data and telephone interviews with patients. Study II analyses the effects on patients' perceptions of individualised care and health literacy by questionnaires. Study III assesses if the intervention is cost-effective according to the Swedish National Board of Health and Welfare. Cost-effectiveness analyses (CEA) estimate gains in Quality-adjusted lifeyears (QALYs), intervention costs, and the patient's healthcare utilisation as obtained from the Stockholm Council database. Acute healthcare use is also explored. Results: Study I shows that adherence to daily symptom reporting was 83 %; most patients used the self-care advice and free text. Patients regarded the app easy to use and helpful for self-management. Marital status, age, education level, and comorbidity were associated with usage variations. Study II shows no between-group differences in individualised care or health literacy among patients with breast cancer. Intervention group patients with prostate cancer rated their support for decision control as more individualised than their control group, and their ability to seek, understand and communicate health information improved. Study III shows the intervention produced significantly more QALYs, although the effect was small. The weekly intervention cost per patient was low. The cost-effectiveness depended on the type of healthcare costs studied. The intervention was cost-effective for patients with breast cancer if non-acute healthcare costs were excluded, and for patients with prostate cancer, considering all healthcare costs. Healthcare costs varied greatly. Patients with breast cancer who used the app had more acute visits for fever. Patients with prostate cancer who used the app had fewer acute visits for urinary problems. Conclusions: Patients used and valued Interaktor as promoting assurance and participation in care. Using the app can positively affect care individualisation and health literacy for patients with prostate cancer during radiotherapy. It may be beneficial to increase the individualisation of features and settings for patients with breast cancer. The intervention may be cost-effective, but to show if healthcare savings can be achieved requires a larger study

What structural factors will the proposed colorectal cancer screening programme need to consider to ensure equity of update for Maori?

New Zealand is currently piloting the feasibility of a national population-based screening programme for colorectal cancer. Colorectal cancer is one of the most common forms of cancer worldwide, with New Zealand having one of the highest colorectal death rates in the world (Blakely et al., 2010; Shah, Sarfati, Blakely, Atkinson & Dennet, 2012). Considered the most preventable form of cancer, lives can be spared through early diagnosis and intervention. However, evidence of disparities continue to exist in access to healthcare within some population groups, which has an influence on uptake rates in screening programmes (Pitama et al., 2012). Despite improvement in decreased mortality rates in New Zealand’s breast and cervical screening, there continues to be a gap in New Zealand’s uptake in health screening initiatives, especially within the Māori population. In view of the proposed colorectal cancer screening programme, there is a need for specific guidelines that will guide healthcare services in providing robust strategies that will effectively contribute to equity of uptake for Māori. A critical literature review on the equity of uptake in population-based screening for New Zealand’s Māori population was undertaken using a critical social theory lens. The aim was to identify factors that influence equity in uptake of screening in order to recommend robust guidelines in assuring equity of uptake for Māori in the proposed colorectal cancer screening programme. Sixteen articles from a large body of knowledge were selected and supporting articles and government publications were also used to enhance the review. A thematic analysis of the selected articles identified access to healthcare/screening as the main theme, with structural issues of socioeconomics, health literacy, structural racism, acceptability of service, appropriate services and geographical structures being sub-themes. Recommendations include on-going education to providers, healthcare professionals and the general public, on-going research into equitable access to screening and follow-up treatment, and consideration of Marae-based clinics and/or mobile endoscopy screening units

“You get to know the people and whether they’re talking sense or not”: Negotiating trust on health-related forums

AbstractThe internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Specifically, online forums allow people to interact with others with similar conditions. However, it is not clear how online health information is assessed by those with LTCs. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise internet forums. Semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. The findings indicate that the use of online forums was a complex and nuanced process and was influenced by a number of individual and illness-specific factors. Participants trusted those with similar experiences and perspectives as themselves, while also valuing conventional biomedical information and advice. By accessing support online, forum users were able to draw on a personalised form of support based on the lived experiences of their peers. However, the role of digital literacy in developing and maintaining online relationships must be acknowledged

Treatment burden in survivors of prostate and colorectal cancer: : a qualitative interview study.

Peer reviewedPostprin

The usability, acceptability, and satisfaction of a digital mental health tool for patients with breast and prostate cancer

The impact and use of digital health tools vary considerably among individuals dealing with somatic illnesses, such as cancer. This variability can be attributed to several factors, such as sociodemographic characteristics, baseline mental health, perception of the intervention’s usefulness, ease of use, and early engagement with the system. In this thesis, we aimed to examine the influence and interaction among these indicators on the usability, acceptability, satisfaction, and clinical effectiveness of a digital health tool in individuals with breast and prostate cancer. All studies were based on data from the NEVERMIND trial, a clinical randomized controlled trial that included patients with five different somatic illnesses. Our study included 255 participants (at baseline) who were diagnosed with breast or prostate cancer. Half of the participants (n=129) were allocated to the NEVERMIND system, whereas the other half (n=125) were allocated to the treatment as usual (control) group. Those in the NEVERMIND system group were involved in the use of the NEVERMIND digital health tool, comprising a mobile app and sensorized shirt (shirt), over a 12-week period. Data from baseline assessments and follow-ups at four and 12 weeks were used. The aim was to assess the usability, acceptability, and satisfaction of the NEVERMIND system, as well as the factors associated with these dimensions. This Ph.D. project also examined how usability and acceptability impacted the clinical effectiveness of the NEVERMIND system on depressive and stress symptoms. Study I. We investigated the association between baseline sociodemographic characteristics and usability assessed at four and 12 weeks of using the NEVERMIND system among 108 patients with breast and prostate cancer who received and used the system. The NEVERMIND system had good usability according to the usability questionnaires. Higher favourability of the mobile app was observed among women (breast cancer patients) compared to men (prostate cancer patients); however, men had significantly higher use of the overall system. Study II. The relationships between sex, education, baseline depressive and stress symptoms, perceived ease of use, perceived usefulness, and system usage at various stages were examined using Bayesian Structural Equation Modelling in a path analysis of 129 patients with breast and prostate cancer. Higher perceived usefulness and initial usage were associated with a higher level of usage at 12 weeks. The results indicated that a better understanding of the system’s benefits and early engagement were key drivers of its sustained use and clinical effectiveness in improving mental health outcomes. Study III. In a sample of 255 patients with breast and prostate cancer, we examined the relationship between the clinical effectiveness, usability, and acceptability of the NEVERMIND system when treating depressive and stress symptoms in patients with breast and prostate cancer. The results showed that patients in the NEVERMIND group had a greater reduction in depressive symptoms than those in the control group at the 12-week follow-up. The findings also showed that users who utilized the system for more than six weeks experienced a statistically significant decrease in both depressive symptoms and stress symptoms compared to those who used it for less than two weeks. Study IV. This study looked at the overall satisfaction of users (68 with breast cancer and 39 with prostate cancer) with the NEVERMIND system. Satisfaction was measured at four and 12 weeks using a one-item questionnaire with two open-ended follow-up questions about user experiences. An inductive and deductive thematic analysis was conducted by using the NEVERMIND system’s components as a sensitizing concept which was then refined and interpreted through the lens of Information Systems (IS) success model. The findings show that 68.24% of users rated the system as good or excellent at four weeks, with a slight decrease to 65.42% at 12 weeks. Three themes emerged from the thematic analysis: (1) Fostering Personal Agency and Motivation, (2) Engagement and Interaction Experiences, and (3) Content Quality and Relevance. Gender differences emerged in the prioritization of emotional support among female users and self-awareness among male users. The satisfaction and challenges faced by users underscore the importance of a user-centric approach that focuses on holistic well-being, user engagement, personalized content, and technical stability. This study also contributes to the broader literature by utilizing IS success model as a framework for interpreting user satisfaction. Conclusions. Higher levels of usability, acceptability, and satisfaction in the NEVERMIND system may contribute to improving the mental health outcomes of patients with breast and prostate cancer, both independently from each other, and even more so when high levels of engagement, acceptance, use, and satisfaction coexist. They emphasize the importance of perceived usefulness, initial engagement, and user-centric design in different components of the NEVERMIND system and confirms the multidimensionality of successful digital health tools implementation. Moreover, the notable differences in usability and preference between genders indicate that tailored and personalized strategies might serve as effective means to address diverse user needs. Taken together, these insights strengthen scientific evidence for healthcare experts and digital health innovators and developers, guiding them towards creating and designing digital health tools through user-centric and multi-domain approaches

Methodological review: quality of randomized controlled trials in health literacy

Background: The growing move towards patient-centred care has led to substantial research into improving the health literacy skills of patients and members of the public. Hence, there is a pressing need to assess the methodology used in contemporary randomized controlled trials (RCTs) of interventions directed at health literacy, in particular the quality (risk of bias), and the types of outcomes reported. Methods: We conducted a systematic database search for RCTs involving interventions directed at health literacy in adults, published from 2009 to 2014. The Cochrane Risk of Bias tool was used to assess quality of RCT implementation. We also checked the sample size calculation for primary outcomes. Reported evidence of efficacy (statistical significance) was extracted for intervention outcomes in any of three domains of effect: knowledge, behaviour, health status. Demographics of intervention participants were also extracted, including socioeconomic status. Results: We found areas of methodological strength (good randomization and allocation concealment), but areas of weakness regarding blinding of participants, people delivering the intervention and outcomes assessors. Substantial attrition (losses by monitoring time point) was seen in a third of RCTs, potentially leading to insufficient power to obtain precise estimates of intervention effect on primary outcomes. Most RCTs showed that the health literacy interventions had some beneficial effect on knowledge outcomes, but this was typically for less than 3 months after intervention end. There were far fewer reports of significant improvements in substantive patient-oriented outcomes, such as beneficial effects on behavioural change or health (clinical) status. Most RCTs featured participants from vulnerable populations. Conclusions: Our evaluation shows that health literacy trial design, conduct and reporting could be considerably improved, particularly by reducing attrition and obtaining longer follow-up. More meaningful RCTs would also result if health literacy trials were designed with public and patient involvement to focus on clinically important patient-oriented outcomes, rather than just knowledge, behaviour or skills in isolation

Motion monitoring during prostate radiation therapy treatment: clinical considerations, and patient preferences and perspectives

Amy Brown investigated motion monitoring in radiation therapy, a primary treatment for prostrate cancer. She investigated clinical and patient-reported outcomes with reduced margins afforded by motion monitoring; patient perceptions and preferences for motion monitoring, and identified future preference research areas. This research has led to practice change at Townsville Cancer Centre

Making Sense and Talking Sense: A Case Study of the Correlations Between Sensemaking, Identity and Image in the New Zealand Functional Food Industry

Functional foods are purported by scientists to provide consumers with health benefits over and above food’s most basic uses: providing energy and sustaining life. Western nations, including New Zealand, face significant health challenges as their populations suffer from unprecedented rates of chronic illnesses like cancer and obesity, and health-conscious consumers appear willing and able to purchase these products. The functional food industry has been growing rapidly for the last decade and is widely tipped to continue this growth. However, there is concern that the market is largely unregulated and consumers are confused by the sheer volume of news and information about functional food and health issues. The purpose of this study is to examine the way that a functional food producer makes sense of its role in this complex social, political and economic context, particularly regarding its contribution to public health. The study takes a communication perspective and uses primarily a thematic analysis. Theories of organisational sensemaking, identity and image provide a framework for the case study analysis focusing on organisational communication with stakeholders and attempts to manage contextual issues that affect both the case study organisation and the whole industry. Data was gathered by interviewing higher-level managers from a range of divisions in the organisation, and by collecting a selection of corporate communication documents produced by the organisation for consumers. The study found that the case study organisation’s identity was heavily influenced by health values that align with the product’s proven health benefits. However, the organisation promotes the product as a premium food product, which prices a number of consumers out of the market, and illustrates the limitations this particular product has for improving consumer health. At the same time, the organisational identity comes under threat from challenges to the sustainability of the organisation’s production methods. Analysing the way organisational members respond to these threats provides an interesting picture of the way sensemaking processes are affected by external influences as internal stakeholders re-assess the organisation’s identity