Understanding the influences on cancer symptom presentation behaviour in the context of socioeconomic deprivation: development of a targeted cancer awareness intervention

Inequalities in cancer survival outcomes can partly be explained by prolonged cancer symptom presentation among socioeconomically deprived groups. This PhD aimed to (1) understand the barriers to cancer symptom presentation among low socioeconomic groups and (2) develop a targeted cancer awareness intervention to promote timely symptom presentation. The COM-B (Capability, Opportunity, Motivation-Behaviour) model was selected to guide understanding of the influences on cancer symptom presentation behaviour. Systematic review and qualitative methods (30 in-depth interviews and six focus groups) were employed to identify the factors influencing symptom presentation. Findings from these studies and a scoping review of cancer awareness interventions were used to inform intervention development, guided by the Behaviour Change Wheel. The intervention was tested for acceptability with two groups of potential users. The combination of poor cancer symptom knowledge, fearful and fatalistic beliefs about cancer, and barriers such as problems associated with obtaining and accessing a primary care appointment prolonged cancer symptom presentation among low socioeconomic groups. In addition, the wider social and environmental opportunities available to people from low socioeconomic groups including economic hardship and negative experiences of cancer were identified as key influences on behaviour. An intensive community group based educational session was developed targeted at current or former smokers and family members of smokers, aged 40 years or over from socioeconomically deprived communities. Content was developed to increase cancer symptom knowledge, modify beliefs and enable timely symptom presentation by utilising strong social networks in the community. Findings from user testing confirmed that group education was an acceptable mode of intervention delivery. Understanding the complex interaction between individual psychological characteristics and the wider environment in which people from low socioeconomic groups live in is essential for modifying cancer symptom presentation behaviour. Community education could be used as a strategy to engage low socioeconomic groups in early cancer detection and warrants further feasibility and pilot testing

Use of mobile devices to help cancer patients meet their information needs in non-inpatient settings: systematic review

Background: The shift from inpatient to outpatient cancer care means that patients are now required to manage their condition at home, away from regular supervision by clinicians. Subsequently, research has consistently reported that many patients with cancer have unmet information needs during their illness. Mobile devices, such as mobile phones and tablet computers, provide an opportunity to deliver information to patients remotely. To date, no systematic reviews have evaluated how mobile devices have been used specifically to help patients meet to their information needs. Objective: A systematic review was conducted to identify studies that describe the use of mobile interventions to enable patients with cancer to meet their cancer-related information needs in non-inpatient settings, and to describe the effects and feasibility of these interventions. Methods: MEDLINE EMBASE and PsychINFO databases were searched up until January 2017. Search terms related to ‘mobile devices’, ‘information needs’ and ‘cancer’. There were no restrictions on study type in order to be as inclusive as possible. Study participants were patients with cancer undergoing treatment. Interventions had to be delivered by a mobile or handheld device, attempt to meet patients’ cancer-related information needs, and be for use in non-inpatient settings. Critical Appraisal Skills Programme (CASP) checklists were used to assess the methodological quality of included studies. A narrative synthesis was performed and findings were organised by common themes found across studies. Results: The initial search yielded 1020 results. Twenty-three articles describing 20 studies were included. Interventions aimed to improve the monitoring and management of treatment-related symptoms (n=17, 85%), directly increase patients’ knowledge related to their condition (n=2, 10%) and improve communication of symptoms to clinicians in consultations (n=1, 5%). Studies were of adult (n=17; age range 24-87 years) and adolescent (n=3; age range 8-18 years) patients. Sample sizes ranged from 4-125, with 13 studies consisting of 25 participants or less. Most studies were conducted in the UK (n=12, 52%) or US (n=7, 30%). Of the 23 articles included, twelve were of medium quality, nine were of poor quality and two were of good quality. Overall, interventions were reported to be acceptable and were perceived as useful and easy to use. Few technical problems were encountered. Adherence was generally consistent and high (periods ranged from 5 days to 6 months), however there was considerable variation in use of intervention components within and between studies. Reported benefits of the interventions included improved symptom management, patient empowerment and improved clinician-patient communication, although mixed findings were reported for patients’ health-related quality of life and anxiety. Conclusions: The current review highlighted that mobile interventions for patients with cancer are only meeting treatment or symptom-related information needs. There were no interventions designed to meet patients’ full range of cancer-related information needs, from information on psychological support to how to manage finances during cancer, and the long-term effects of treatment. More comprehensive interventions are required for patients to meet their information needs when managing their condition in non-inpatient settings. Controlled evaluations are needed to further determine the effectiveness of these types of intervention

“That’s the whole thing about vaping, it’s custom tasty goodness”: a meta-ethnography of young adults’ perceptions and experiences of e-cigarette use

Background E-cigarettes are increasing in popularity, particularly among young adults. With public health organisations contesting the possible benefits of e-cigarettes, research is required to explore young adults’ use of e-cigarettes as a smoking cessation and recreational tool. This study examined existing qualitative data to understand how transition into adulthood and issues of identity affect young adults’ perceptions and experiences of e-cigarette use. Methods A meta-ethnography was conducted to examine how young adults perceive and use e-cigarettes. Data were synthesised using Noblit and Hare’s (1988) meta-ethnographic approach. Bronfenbrenner’s socio-ecological model (1979) was used to conceptualise themes and map findings. Results A total of 34 studies were included in the review. Young adults viewed e-cigarettes as a safer alternative to traditional cigarette smoking and perceived e-cigarettes as an effective cessation tool. Users were able to personalise their e-cigarette use due to the variety of flavours and devices available. E-cigarettes were found to be a sociable tool as they allowed users to align themselves with their peers who used e-cigarettes and facilitated use within smoke-free environments. Young adults demonstrated high levels of self-efficacy with regards to obtaining e-cigarettes from various retailers and were active consumers of e-cigarette marketing. Conclusion This meta-ethnography provides an in-depth insight into social norms around e-cigarette use and beliefs that e-cigarettes could be a safer alternative to traditional cigarettes. As young adults increasingly engage with e-cigarettes, there is a need for informed policy decisions regarding appropriate use. Engagement with e-cigarettes is often reflected within social media, so this medium could be a key platform for creating tailored interventions which inform young adults about the appropriate use of these products

Barriers to cancer symptom presentation among people from low socioeconomic groups: a qualitative study

Abstract Background Socioeconomic inequalities in cancer survival can in part be explained by long patient intervals among people from deprived groups; however, the reasons for this are unclear. This qualitative study explores the actual and anticipated barriers to cancer symptom presentation in the context of socioeconomic deprivation. Methods Thirty participants were recruited through the International Cancer Benchmarking Partnership Welsh database (n = 20), snowball sampling (n = 8) and community partners (n = 2). Semi-structured qualitative interviews were conducted with symptomatic and asymptomatic adults over the age of 50 years, who were identified as being from a low socioeconomic group based on multiple individual and group level indicators. Transcripts were analysed using a Framework approach based on the COM-B model (Capability, Opportunity, Motivation-Behaviour). Results There was evidence of poor awareness of non-specific cancer symptoms (Capability), fearful and fatalistic beliefs about cancer (Motivation), and various barriers to accessing an appointment with the family physician (Opportunity) and full disclosure of symptoms (Capability). These in combination were associated with a lengthened patient interval among participants. Social networks (Opportunity) were influential on the formation of knowledge and beliefs about cancer. Participants’ behavioural and normative beliefs were usually formed and reinforced by people they knew with cancer, and such beliefs were considered to lengthen the patient interval. Discussing symptoms with a family member or friend before a visit to the family physician was the norm, and could act as a barrier or facilitator depending on the quality of advice given (Opportunity). Economic hardship meant fulfilling basic day-to-day needs such as finding money for food were prioritised over medical help seeking (Opportunity). Conclusions The complex interaction between individual characteristics and socio-environmental factors is important for understanding cancer symptom presentation behaviour, especially in the context of socioeconomic deprivation. Interventions targeted at deprived communities should take into account the wider social influences on symptom presentation behaviour

Evaluation of a national lung cancer symptom awareness campaign in Wales

Background Lung cancer is the leading cause of cancer mortality in Wales. We conducted a before- and after- study to evaluate the impact of a four-week mass-media campaign on awareness, presentation behaviour and lung cancer outcomes. Methods Population-representative samples were surveyed for cough symptom recall/recognition and worry about wasting doctors’ time pre-campaign (June 2016; n = 1001) and post-campaign (September 2016; n = 1013). GP cough symptom visits, urgent suspected cancer (USC) referrals, GP-ordered radiology, new lung cancer diagnoses and stage at diagnosis were compared using routine data during the campaign (July–August 2016) and corresponding control (July–August 2015) periods. Results Increased cough symptom recall (p < 0.001), recognition (p < 0.001) and decreased worry (p < 0.001) were observed. GP visits for cough increased by 29% in the target 50+ age-group during the campaign (p < 0.001) and GP-ordered chest X-rays increased by 23% (p < 0.001). There was no statistically significant change in USC referrals (p = 0.82), new (p = 0.70) or early stage (p = 0.27) diagnoses, or in routes to diagnosis. Conclusions Symptom awareness, presentation and GP-ordered chest X-rays increased during the campaign but did not translate into increased USC referrals or clinical outcomes changes. Short campaign duration and follow-up, and the small number of new lung cancer cases observed may have hampered detection effects

Influences of cancer symptom knowledge, beliefs and barriers on cancer symptom presentation in relation to socioeconomic deprivation: a systematic review

Background People from lower socioeconomic groups have worse survival outcomes for cancer, which in part reflects later-stage disease at diagnosis. The mechanisms underlying delayed cancer symptom presentation in lower socioeconomic groups are not well understood. Methods Systematic review of studies of actual or anticipated symptom presentation across all tumour sites. Included studies measured socioeconomic group, symptom presentation and one or more of the following variables: cancer symptom knowledge, beliefs about cancer, barriers/facilitators to symptom presentation. Results A total of 60 studies was included. Symptom knowledge overall was lowest and actual presentation time was longest in lower socioeconomic groups. Knowledge for specific symptoms such as lumps and bleeding was good and encouraged timely symptom presentation, in contrast to non-specific symptoms which were not well recognised. The combination of fearful and fatalistic beliefs was typically associated with later presentation, especially in lower socioeconomic groups. Emotional barriers such as ‘worry what the doctor might find’ were more frequently reported in lower socioeconomic groups, and there was evidence to suggest that disclosing symptoms to family/friends could help or hinder early presentation. Conclusions Poor symptom knowledge, fearful and fatalistic beliefs about cancer, and emotional barriers combine to prolong symptom presentation among lower socioeconomic groups. Targeted interventions should utilise social networks to improve knowledge of non-specific symptoms, challenge negative beliefs and encourage help-seeking, in order to reduce avoidable delays and minimise socioeconomic group inequalities