Feasibility and acceptability of a cancer symptom awareness intervention for adults living in socioeconomically deprived communities

Feasibility and acceptability of a cancer symptom awareness intervention for adults living in... Background: Cancer survival rates in the UK are lower in comparison with similar countries in Europe and this may be linked to socioeconomic inequalities in stage of cancer diagnosis and survival. Targeted cancer awareness interventions have the potential to improve earlier symptomatic diagnosis and reduce socioeconomic inequalities in cancer outcomes. The health check is an innovative, theory-based intervention designed to increase awareness of cancer symptoms and risk factors, and encourage timely help seeking among adults living in deprived communities. Methods: A prospective, non-randomised evaluation was undertaken to test the feasibility and acceptability of the health check for adults aged 40 years and over living in deprived areas of Wales. Primary outcomes included recruitment and retention of approximately 100 adults, reach to participants in the lowest deprivation quartile, and intervention acceptability. Secondary outcomes included self-reported cancer symptom recognition, help-seeking behaviours and state anxiety pre/post intervention. Results: Of 185 individuals approached, 98 (53%) completed the intervention. Sixty-six of 98 participants were recruited from community settings (67%) and 32 from healthcare settings (33%), with 56 (57%) from the lowest deprivation quartile. Eighty-three (85%) participants completed follow-up assessment. Participants recognised on average one extra cancer symptom post intervention, with improved recognition of and anticipated presentation for non-specific symptoms. State anxiety scores remained stable. Qualitative interviews (n = 25) demonstrated that the intervention was well received and motivated change. Conclusions: Recruitment was feasible in community and healthcare settings, with good reach to adults from low socioeconomic groups. The health check intervention was acceptable and demonstrated potential for improved cancer awareness and symptom presentation, especially for non-specific symptoms, in communities most affected by cancer. Keywords: Cancer, Complex intervention, Qualitative, Behaviour change, Inequality, Symptom presentation, Feasibility, Awareness, Socioeconomic deprivation * Correspondence: Smithp18@cardiff.ac.uk Division of Population Medicine, Cardiff University, 1st Floor, Neuadd Meirionnydd, Heath Park, Cardiff CF14 4YS, UK Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Smith et al. BMC Public Health (2018) 18:695 Page 2 of 11 Background To our knowledge this is the first study in the United Cancer is the leading cause of deaths in high income Kingdom to use an interactive touchscreen tablet as the countries [1] and research has shown that 42% of people technological component of a multifaceted, complex who died in the UK during 2008 had a cancer diagnosis intervention aimed at improving cancer awareness and at some point in their life, with tumours being the cause symptom presentation. of death in 64% of these patients [2]. Half of people diag- In accordance with the MRC framework for complex nosed with cancer in the UK survive for 10 or more interventions [20], developmental work to refine the years and this survival rate has doubled over the past health check was previously undertaken in phase 1 of 40 years [3]. However, UK survival rates have been con- ABACus (Awareness and Beliefs About Cancer) from sistently lower in comparison with similar countries in November 2014 to October 2015, and was informed by Europe [4–7] and this may be linked to socioeconomic a theoretical understanding of barriers and enablers to inequalities in stage of cancer diagnosis [8–10]. The “pa- timely help seeking among people living in disadvan- tient interval” is defined as the time between appraising taged communities [19]. During phase 1, the Behaviour a bodily change as a potential symptom of cancer and Change Wheel [21] was used to refine the delivery and presenting in primary care [11]. The patient interval ac- content of the health check through a systematic process counts for the greatest proportion of time in the path- involving the identification of four intervention func- 1 2 3 way from discovering a symptom to the start of cancer tions (education, enablement, persuasion and environ- treatment [12], and has been found to lengthen with in- mental restructuring ) and corresponding behaviour creasing socioeconomic deprivation [13]. The revised change techniques to include in the intervention [22]. NAEDI (National Awareness and Early Diagnosis Initia- Importantly, the health check is facilitated by a lay ad- tive) pathway (see Additional file 1) describes the influ- visor who is trained to engage participants and deliver ence of socioeconomic status on cancer survival and theory-based behaviour change techniques. premature mortality in the United Kingdom [14]. The The purpose of the current study (ABACus phase 2) NAEDI pathway hypothesises that background factors was to test the feasibility and acceptability of the health such as low public awareness, barriers to help-seeking check intervention in community and health care set- and negative beliefs about cancer can negatively influ- tings in socioeconomically deprived areas. Specific objec- ence presentation to primary care. tives were to conduct a before and after questionnaire Barriers to early cancer symptom presentation include study to evaluate feasibility of recruitment, reach to and lack of knowledge about potential cancer symptoms retention of the target audience (primary outcomes), po- [15], fatalism and denial [16], fear of treatment and diag- tential for change in cancer symptom recognition and nosis, fear of dying [17] and misinterpretation of symp- help-seeking intentions/behaviours and unintended con- tom seriousness [18]. A systematic review of the sequences relating to anxiety (secondary outcomes), and influences of awareness and beliefs on symptom presen- to carry out qualitative interviews to understand how tation demonstrated that fearful and fatalistic beliefs the intervention was viewed by adults living in deprived about cancer are associated with longer symptom pres- communities. entation times in individuals from areas of socioeco- nomic deprivation [16]. Evidence-based initiatives that Methods aim to increase awareness of potential cancer symptoms The research was conducted in line with the MRC guid- and minimise barriers to early cancer diagnosis among ance for development and evaluation of complex inter- people living in deprived communities have the potential ventions [20]. The study materials and protocol were to improve cancer outcomes and reduce socioeconomic approved by NHS Health Research Authority: National inequalities [11, 18]. Research Ethics Service (Reference: 14/NW/1104) and The health check is a theory-based intervention de- all participants gave written informed consent. signed and developed in a previous phase of work undertaken by the authors in partnership with Tenovus The intervention Cancer Care, a Welsh cancer charity. The aim of the The health check is a tablet-based interactive touchsc- health check is to improve awareness of cancer symp- reen questionnaire that takes around 30–45 min to toms and risk factors, encourage positive beliefs about complete and is delivered face-to-face by a trained lay early detection, and increase motivation to seek help advisor. The touchscreen questionnaire includes 26 among adults living in socioeconomically deprived com- questions covering the domains of personal history munities. The intervention is primarily designed to re- (“About you”), lifestyle (“Your lifestyle”) and symptom duce the patient interval, but also includes advice on experience (“Your health”) (see Additional file 2 for full cancer screening and lifestyle risk factors in order to list of questions). Personalised results are given in a traf- synergise early detection and prevention messages [19]. fic light system, with ‘green’ indicating results where no Smith et al. BMC Public Health (2018) 18:695 Page 3 of 11 signposting or change is suggested, ‘amber’ indicating an First was a Welsh Government programme that focused area where signposting or change could be considered, on tackling poverty by supporting the most disadvantaged and ‘red’ results indicating that action should be taken. people in the most deprived areas of Wales. Non-English Categorisation of results for lifestyle risk factors is based speakers and those unable to give informed consent were on existing NICE, NHS and government guidelines [23– excluded. Participants were approached at each site by a 26]. Manualised advice and signposting to relevant member of the research team and provided with study services (for example General Practitioner, local stop materials. Participants were offered a £10 high street smoking services and weight loss services) are provided shopping voucher after completion of the baseline ques- by the lay advisor based on the personalised results. At tionnaire and intervention. A further £5 high street shop- the end of the health check, participants receive a print- ping voucher was offered at completion of the one month out of their results and a brief action plan. The health follow-up questionnaire. check content, underpinning intervention functions and The purposive sampling framework consisted of ten behaviour change techniques are detailed in Table 1. settings across two study sites. Participants were re- cruited from settings identified during phase 1: three Sample community based locations (local community groups, Participants were adults aged 40 years and over recruited one-to-one sessions, local events) and two healthcare opportunistically in healthcare and non-medical commu- settings (GP practices, community pharmacies). Existing nity settings in “Communities First” areas. Communities community contacts, such as Communities First staff Table 1 Health check intervention content Intervention Description of Purpose of component Summary of Behaviour change Example of application components component intervention techniques [22] within the intervention functions Touchscreen Background information about Contextual information Education, Information Information about the questionnaire: the participant including personal about potential risk persuasion, about health benefits of early diagnosis. “About you” and family history of cancer, body factors for cancer. environmental consequences , Information about factors (7 questions) mass index and cancer screening restructuring prompts/cues that may increase the risk of attendance . developing cancer (e.g. being overweight). Questions about previous engagement with cancer screening. Touchscreen Diet, smoking, alcohol Contextual information Education, Information Signposting to local services, questionnaire: consumption and about potential risk persuasion, about health such as Stop Smoking Wales. “Your lifestyle” physical activity. factors for cancer. enablement consequences, Encouragement to pass the (5 questions) credible information on to friends source , social or family. support Touchscreen Cancer warning signs Contextual information Education, Information Signposting to General questionnaire: and symptoms about potential symptoms persuasion, about health Practitioner. “Your health” (see Additional file 2) of cancer. environmental consequences, Information about cancer (14 questions) restructuring prompts/cues, warning signs and symptoms credible source to encourage early presentation within three weeks of noticing a potential symptom (now and in the future). Personalised Displays a printable Provides participants with Education, Information Participants complete the results summary of the an overview of their health enablement about health following statement: individual’s results check results, to act as a consequences, “If I notice a symptom, I will go and action prompt for change action planning , and see my ________ (for example, to present (e.g. discussion at their goal setting within _______ of noticing to their General Practitioner GP appointment). the symptom”. with potential cancer symptoms). Remind participants about the benefits of early diagnosis. National cancer screening programmes in Wales include bowel (every two years for men and women, aged 60–74), breast (all women aged 50–70) and cervical (women aged 25–49 every three years, women aged 50–64 every five years) Providing information about health consequences of performing the suggested behaviour Introduction and definition of environmental or social stimulus with the purpose of prompting or cueing the suggested behaviour Presenting verbal or visual communication from the credible source in favour of or against a behaviour Advising on practical and emotional social support (e.g. from friends or family) Prompt detailed planning of performance of the behaviour (e.g. inclusion of context, frequency, duration and intensity) Setting or agreeing a goal defined in terms of behaviour to be achieved Smith et al. BMC Public Health (2018) 18:695 Page 4 of 11 and community pharmacy managers, facilitated the iden- away’,‘losing weight without trying to’). Response options were tification of settings. recoded to create a binary measure of anticipated symptom presentation (‘more than 3 weeks’ and ‘under 3 weeks’). Data collection procedures Data regarding the number of participants who were State anxiety The short-form state scale of the State Trait approached, agreed to participate, completed the base- Anxiety Inventory (STAI) [28] was included to measure line questionnaire, and completed one month follow-up unintended negative consequences of taking part in the were collected by the researcher (PS). Baseline question- health check. naire data were collected by PS, who had relevant train- ing in qualitative research methods. The data were Process evaluation measures Three questions were in- captured on computer based forms using an iPad, for cluded to evaluate intervention acceptability: ‘How useful direct capture to a secure Cardiff University server. The did you find the information in the health check?’ (‘not health check took place in a suitable private room with at all useful’, ‘somewhat useful’, ‘moderately useful’ and the lay advisor present. One month follow-up took place ‘very useful’); ‘What did you think about the amount of by telephone and those who were unable to be contacted information in the health check?’ (‘not enough’, ‘about after three attempts were sent a postal version of the right’ and ‘too much’), and ‘Would you recommend the questionnaire and a pre-paid envelope. health check to friends or family?’ (‘yes’ or ‘no’). Socio-demographic characteristics Qualitative interviews The baseline consent form in- Socio-demographic characteristics were gathered on age, cluded permission to contact participants regarding further sex, education level, employment status, ethnic origin, participation in process evaluation interviews after they home/living arrangement and relationship status. Socio- completed the one month follow-up questionnaire. Partici- economic group was assessed by matching postcodes to pants were sampled using maximum variation sampling the Welsh Index of Multiple Deprivation (WIMD) (lower based on age, gender and intervention location, and inter- super-output areas). viewed after completion of one month follow-up. Study re- cruitment materials were posted to those who expressed an Outcome measures interest and the researcher contacted respondents to ar- Primary outcomes range a time, date and location to carry out the interview. Primary outcomes included recruitment of 100 partici- Participants were also given a £10 shopping voucher after pants within a four month period, recruitment of at least the interview. Face-to-face interviews were conducted by 50% of participants in the lowest deprivation quartile, PS and explored use of the health check, views and and a loss to follow-up rate of no higher than 30%. feedback on acceptability of the health check setting, and perceptions of whether any indicated change in behaviour Secondary outcomes was acceptable and supported by friends/family members. Cancer symptom recognition Cancer symptom recog- Analysis Data regarding recruitment, retention rates and nition was measured using items adapted from the vali- socio demographic characteristics of participants were sum- dated ABC measure [27]. Recognition of potential marised. Questionnaire data were summarised with an arith- cancer symptoms was assessed using the question stem metic mean, and the crude mean change in total cancer ‘Please tell us if you think the following are warning signs symptom recognition score from baseline to one month of cancer’ followed by a series of cancer symptoms. follow-up was analysed. Where participants failed to respond Symptoms included in the ABC were adapted to assess to individual items within an instrumentata specific time recognition of 14 symptoms that were included in the point, but completed more than 75% of items, an arithmetic intervention. Responses were dichotomised for analysis average was imputed for the items that they failed to answer. (i.e. ‘yes’ versus ‘no/don’t know’), with ‘yes’ responses Participants who were recorded as having missing instru- summed to derive a total cancer symptom recognition ment data were not included in the analysis population. score with a score range of 0 to 14 [27]. Descriptive statistics were used to assess proportions of indi- vidual cancer symptoms recognised and anticipated time to Anticipated symptom presentation The ABC measure symptom presentation at baseline and one month. Statistical [27] was adapted to assess anticipated time to presentation analysis was carried out using IBM SPSS Statistics V.23. for symptoms that could indicate cancer. To reduce partici- The anonymised process evaluation interviews were pant burden, anticipated presentation was anchored to two analysed thematically by PS using NVivo. An inductive classic cancer symptoms (‘an unusual lump’, ‘blood in your approach to the data was adopted which involved famil- poo’) and two non-specific symptoms (‘acoughthat won’tgo iarisation with the data, coding and searching, reviewing Smith et al. BMC Public Health (2018) 18:695 Page 5 of 11 and defining themes that emerged. Dual coding of 20% Socio-demographic characteristics of the interview transcripts was conducted by SS and Baseline socio-demographic characteristics of the 98 re- KB, and discrepancies were resolved through discussion. spondents are shown in Table 1. Sixty-one percent of participants were aged 60 years or more and 65% were female. Fifty-seven percent of participants were from the Results lowest WIMD deprivation quartile. Fifty-one percent or Primary outcomes participants were retired and 55% had no formal educa- Study recruitment tion. Ninety-three percent of the participants described One hundred and eighty five people were approached to their ethnic origin as British and 12% reported having take part in the study and 103 (56%) agreed to partici- ever had a cancer diagnosis (Table 2). pate. Five of those who agreed to take part did not meet the inclusion criteria. A total of 98 people were eligible Secondary outcomes (95%) and 100% of these completed the baseline Cancer symptom knowledge questionnaire and intervention. There was a loss to Participants recognised on average one extra cancer symp- follow-up of 15% with 83 participants (85%) completing tom post intervention, with an average total symptom rec- the one month follow-up assessment. Sixty-six partici- ognition score of 10 (score range: 0–14) at baseline and 11 pants (67%) were recruited in community settings and (score range: 0–14) at follow up. As shown in Table 3, 32 (33%) were recruited in healthcare settings. Figures baseline ceiling effects were observed for recognition of demonstrating intervention feasibility, including rates of specific cancer symptoms including lump (95%), rectal completion using telephone and postal follow-up bleeding (94%) and a change in how skin looks (91%). The methods, are presented in Fig. 1. highest potential for improved symptom recognition was Fig. 1 Study recruitment Smith et al. BMC Public Health (2018) 18:695 Page 6 of 11 Table 2 Sample characteristics State anxiety The mean state anxiety score was 33.4 (SD = 12.6, range Variable Descriptive statistic 20–80) at baseline and 34.3 (SD = 11.5, range 20–63) at N* % one month follow-up. Scores at both time points were Age, years within the normal range [28]. 40–49 18 18 50–59 20 21 Process measures of acceptability >60 60 61 Sixty-four participants (77%) at one month follow-up de- Sex scribed the information in the health check as very useful, with 13 participants (16%) describing it as moderately use- Male 34 35 ful and six (7%) as somewhat useful. Seventy-five partici- Female 64 65 pants (90%) thought the amount of information in the Deprivation Quartile health check was about right, three (4%) thought there Most deprived 56 57 was too much, and five (6%) said there was not enough in- Second most deprived 20 21 formation. All 83 respondents (100%) said that they would Second least deprived 19 19 recommend the health check to their family or friends. Least deprived 3 3 Qualitative interviews Employment status Thirteen men and 12 women were interviewed, with a Employed 21 21 mean age of 66 years (range: 40–82). Interviews were on Unemployed 27 28 average 25 min long (range 14–43 min). Key themes in- Retired 50 51 cluded intervention acceptability and changes in symp- Highest level of education tom awareness and behaviour. Sample quotes are presented in Table 4 and referred to within the text in No formal qualification 54 55 parentheses. GCSE or equivalent 19 20 Higher education below degree level 16 16 Intervention acceptability Degree level or higher 7 7 The rapport that was built between the lay advisor and the Other 2 2 participant was an important aspect of intervention ac- Ethnic origin ceptability. Participants felt as though they were listened to and could therefore discuss sensitive topics during the Welsh/English/Scottish/ Northern Irish/ British 91 93 health check (A). Participants’ overall views and experi- Bangladeshi 1 2 ences of doing the health check were positive and they African 2 2 found the content of the intervention engaging. Further- Caribbean 2 2 more, participants reported that being approached in a Other 2 1 community setting to talk about cancer was acceptable. It Cancer diagnosis was felt that the friendly and informal nature of the inter- vention made for a pleasant, empowering experience and Yes 12 12 health check users enjoyed having the opportunity for fo- No 86 88 cused discussion on their health (B). *N = 98, no missing data A range of preferences were expressed for completion of the onscreen health check questionnaire. Older par- ticipants expressed a preference for the lay advisor to fa- observed for unexplained change in appetite (41 to 65%), cilitate completion of health check. However, some feeling bloated on most days (37 to 52%) and problems participants felt confident in completing the health when peeing (50 to 66%). check on the iPad. Both methods of delivering the health check were found to be acceptable and the tailored na- ture of the intervention meant that either method could Anticipated symptom presentation be easily implemented (C). As depicted in Fig. 2, the largest improvement in antici- Participant feedback regarding the intervention content, pated time to symptom presentation was for persistent such as the information presented and the language used, cough (32%), followed by unintended weight loss (14%). demonstrated that it was acceptable to users. Participants Anticipated symptom presentation increased by 6% for did not express any difficulties with understanding the in- blood in stools and increased by 2% for an unusual lump. formation given to them during the health check and Smith et al. BMC Public Health (2018) 18:695 Page 7 of 11 Table 3 Cancer symptom recognition at baseline and one month follow-up Cancer symptoms (answered: ‘yes’) Baseline descriptive One month descriptive statistic (n = 98) statistic (n =82 ) n% n % A cough that won’t go away 75 77 63 77 An unusual lump 93 95 73 89 A change in how your skin looks 89 91 72 88 A sore or ulcer in your mouth that will not heal 68 70 65 79 A change in your poo 77 79 67 82 Blood in your poo 92 94 76 93 Problems when peeing 49 50 55 66 Unexplained bleeding (e.g. blood in urine, rectal bleeding, vaginal bleeding during/after 83 85 72 88 sex or in between periods) Difficulty swallowing 63 64 59 72 Losing weight without trying to 85 87 66 81 Feeling bloated on most days 36 37 43 52 An unexplained change in your appetite 40 41 53 65 Feel tired most of the time 57 58 53 65 An unexplained pain that won’t go away 73 75 61 75 Ns vary due to missing data for individual items in the cancer symptom recognition measure. Items where data were missing have been indicated 1,3,6 2,4,5 ( missing data for 2 participants, missing data for 1 participant). One participant answered < 75% of the measure and was excluded from the analysis Wording of the symptoms reflect those used in the intervention thought it was delivered in an easy to understand, user indicated). These participants felt they already knew about friendly manner (D). Some participants mentioned that certain cancer symptoms and that some risk factors were the health check was slightly repetitive and that there was not relevant to them. They therefore considered that too much information (E). in-depth coverage of these areas was not beneficial (G). Some symptom questions in the health check, such as Distance to travel to do the health check was generally feeling bloated and losing weight without trying to, were considered by participants to be convenient and the ability difficult for some participants to answer. This was mainly to easily access the health check was described as import- due to the older age of the sample and potential for co- ant. Many of the health check locations were situated cen- morbid health issues that gave rise to some participants trally within deprived communities and at a venue where experiencing symptoms included in the health check (F). potential participants would attend during the day (H). While the results section was generally acceptable to participants, some felt that exploring “green” results Changes in symptom awareness and behaviour (where no action was suggested) was not as beneficial as Participants described making changes to their lifestyles discussing “amber” or “red” results (where action was since taking part in the health check, including improving Fig. 2 Anticipated time to symptom presentation: proportion stating that they would present within three weeks at baseline and follow-up Smith et al. BMC Public Health (2018) 18:695 Page 8 of 11 Table 4 Example quotes from process evaluation interviews Coding Example quotes Text reference Intervention acceptability “Very personable, very approachable, a good listener. Took on board what I had to say, even A though parts of it, because I talked about my Mum, I was quite upset.” Female, 48 “It was more of a very friendly discussion about the areas that I could look at to improve, B to give myself a better chance of surviving longer.” Male, 49 “If there was a question that I wasn’t sure of, and it was sort of, say there was three different C answers you could answer, and that answer wasn’t there, then I’d find it difficult, again I think that’s a generation thing, I’d rather verbally, rather than a screen or impersonal then put it that way.” Female, 63 “It was understandable, easily understandable. It wasn’t difficult to understand and it was in plain D English, which I thought was good.” Female 71 “Personally I thought it was a little bit too much, to take in in one go, you just want to come out E and come home, and said to my girls, I said well I can’t tell you, I wouldn’t have a clue. It’s too much to take in, there was a lot that I didn’t know, but I thought there was a lot to take in, again a little bit repetitive.” Female, 63 “Some of the questions would be, not really concerned with, like this one ‘have you been losing F weight without trying to?’ Yes or no, with me I’m on so many tablets, some months I put weight on, so it’s not difficult to answer it correctly but it’s a little bit of controversy, if you see what I mean?.” Female, 63 “In my head I was thinking, I already know that, I want you to talk to me about the things that G did flag up, to me that’s the important bit, I need to know more about that so I can change.” Male, 50 “Very convenient. If I had to travel somewhere I don’t think I would have gone. Because it was H here and I didn’t have to go out my way it was much easier.” Male, 50 Changes in symptom “My daughter now will, instead of making chocolate sandwiches for work, I will do her a pasta I awareness and behaviour salad and things like that so they love it, they love the change.” Female, 40 “Let’s have a look at what I am eating, what I am drinking, what I am smoking. All the, what I am, J what I thought was reasonable, some of them are not so reasonable, and I do need to back track and think. And I have.” Male, 49 “I am cautious about myself, especially for example when I am changing from day clothes to K evening pyjamas or when I am in the shower, I have a big mirror in my bathroom so I do tend to look over my body, so that shows me various things, and I reveal those to my GP when I go to see him” Male, 65 “I didn’t really know that, if you had a persistent cough you should go and see about it because L I would have thought it’s just sore throat or something.” Male, 56 years “I didn’t realise all the symptoms. It was informative, eye opening” Female, 40 years M their diet, engaging in more physical activity and decreas- dressed, was mentioned and suggests that since doing ing alcohol consumption. The importance of social net- the health check many participants found this behaviour works, such as family and friends, in supporting these change to be manageable and easy to adopt (K). changes was reported by participants. Receiving social Participants reflected on new knowledge that they had support meant that participants were more motivated to obtained from the health check about presenting to their continue eating a healthy diet and these changes could in GP with vague cancer symptoms, such as a persistent turn positively impact family members (I). cough. Before taking part in the intervention, partici- The intervention made participants think more about pants discussed not having previous knowledge of these their health in relation to their age and acted as a prompt potential symptoms and that the intervention offered to consider making changes to their diet, smoking habits new information about the importance of presenting to and alcohol consumption (J). Many participants described the doctor (L, M). the health check as an opportunity to identify areas of their health and lifestyle that they could improve. Discussion Participants discussed the importance of checking for To our knowledge the current study is the first to evaluate potential symptoms of cancer, and many participants re- a community-based intervention designed to increase can- ported carrying out health protective behaviours, such as cer awareness and encourage early symptom presentation checking for lumps in the shower, since taking part in among adults living in deprived communities. The current the intervention. The ability to integrate these behav- feasibility phase was an opportunity to explore contextual iours into a daily routine, such as showering or getting factors relating to recruitment settings and to enhance the Smith et al. BMC Public Health (2018) 18:695 Page 9 of 11 intervention in preparation for a future trial of effective- acceptability. As well as being an acceptable means of ness. The health check intervention was found to be ac- engaging participants, the health check was considered ceptable to participants and was feasible to deliver within to be useful and easy to understand in terms of its infor- community and healthcare settings, with evidence of mation content. With a growing body of evidence sug- reach to individuals from low socioeconomic groups. gesting that individuals with low health literacy are more We found strong support for the proposed theoretical likely to misunderstand health-related information [30], mechanisms of change likely to positively influence can- and potential for low health literacy in the target popula- cer awareness and behavioural outcomes. During phase tion, it was essential that the health check content was 1 of ABACus, the Behaviour Change Wheel [21]was accessible and comprehensible. Participants were recep- used to guide the selection of intervention functions and tive to the information delivered in the health check, content. One of the key functions that was identified and described the importance of having the lay advisor during the developmental phase as being integral to the present to empower and encourage them. However, health check was environmental restructuring [19], with intervention feedback from the qualitative interviews the present study providing evidence that this aspect suggested that the duration of the health check and was integral to the acceptability and feasibility of the repetition of content were undesirable, indicating a need intervention. The intervention restructured the physical for content refinements to further enhance intervention and social environment through delivery in non-medical acceptability. community settings, and through provision of social en- The current feasibility study presented an opportunity couragement and support from a lay advisor who was to examine the change processes underpinning the health able to build rapport with participants. Findings from check, and therefore its potential to influence outcomes the qualitative interviews confirmed that these mecha- relating to cancer awareness in socioeconomically de- nisms were practicable to implement and agreeable to prived groups. Evidence from the prospective question- participants, and that the lay advisor was perceived as a naire study indicated that the combination of intervention trusted source of information and advice about cancer functions reflecting education, persuasion and enablement awareness and lifestyle risks. These findings are promis- may encourage symptom awareness and motivate behav- ing, and support the recommendations of a systematic iour change [19]. As well as increasing knowledge and review [16] for interventions that target local communi- awareness, an important function of the health check is to ties as a way to encourage timely cancer symptom pres- counter fearful and fatalistic beliefs about cancer [11, 31] entation among people from low socioeconomic groups. using persuasive and empowering messages delivered by a The health checks took place at convenient local com- trained lay advisor. The inclusion of theory-derived mech- munity venues using opportunistic recruitment pro- anisms may therefore explain the potential for change that cesses, thereby removing practical barriers to access was observed for recognition of non-specific cancer symp- such as difficulties with transport. Interview participants toms and anticipated help-seeking behaviour in the described the suitability of the health check locations. current phase. Additionally, quantitative data indicated The current research suggests that community-based that all participants at one month follow-up had recom- recruitment methods are essential for engaging deprived mended the health check to their friends or family, dem- populations in cancer awareness interventions. Although onstrating the potential for health check messages to it was feasible to recruit in both community and health- harness the ‘lay system’ of health care [32] and to reach in- care settings, recruitment rates were higher in community dividuals within surrounding social circles. Public aware- venues such as health events, sheltered housing and food ness of vague cancer symptoms is poor, especially among banks. A recent systematic review [29] found that facilita- low socioeconomic groups [33] and therefore targeted tors for involving ‘hard to reach’ groups in health promo- community-based cancer awareness interventions should tion interventions included the use of incentives and aim to raise awareness of vague, non-specific symptoms well-targeted community advertising. Although financial and tackle fear associated with going to the doctor, in incentives were given for participation in the current order to encourage early presentation. study, the health check was not widely advertised. We acknowledge the limitations of conducting this Employing highly proactive recruitment strategies in fu- feasibility study in one location (socioeconomically de- ture research may help to further increase recruitment of prived areas of South Wales), and that the findings may the target population in healthcare settings. not be generalisable to other geographical areas. Partici- The health check intervention was successful in reach- pants were recruited using opportunistic sampling ing adults from low socioeconomic groups, with over methods, which may also limit representativeness. How- half of the sample (55%) having no formal qualification. ever, previous research has observed similar levels of can- In addition, study retention exceeded expectations and is cer knowledge, beliefs and barriers across Wales, England a further indicator of intervention feasibility and and Northern Ireland [34], hence the current findings may Smith et al. BMC Public Health (2018) 18:695 Page 10 of 11 be applicable and the intervention itself transferable to Health & Social Care R&D Division, Public Health Agency (Northern Ireland); National Institute for Social Care and Health Research (Wales) and the other deprived areas of the UK. The effectiveness of the Scottish Government. We acknowledge the support of the National Institute health check in increasing cancer awareness and for Health Research (NIHR) Biomedical Research Centre at South London and help-seeking behaviour should therefore be tested in the Maudsley NHS Foundation Trust and King’s College London. context of a multi-centre controlled trial. In addition, al- Availability of data and materials though the ABC measure has been internationally vali- The datasets generated during and/or analysed during the current study are dated [27], its validity in the context of socioeconomic available from the corresponding author on reasonable request. deprivation is unclear and future research should aim to Authors’ contributions psychometrically test the adapted ABC measure for use PS established writing assignments and deadlines for written contributions and with individuals from lower socioeconomic groups. co-author reviews, and ensured an open forum for co-authors to share their concerns and suggestions. PS compiled drafts, distributed them for review, and provided specific direction for reviews and revisions as well as ensuring that all Conclusion ethical considerations were addressed. SO contributed heavily with data The current research generated evidence about collection and recruitment feedback. KB was the principal investigator and theory-based mechanisms of change that are likely to over- designed the study with BC who was the author for the statistical analysis plan and directed the analysis as the trial statistician. All other authors (SS, FW, AE, GM, come barriers to cancer awareness and help-seeking behav- MR and JT) made substantial contribution to the study design, acquisition of data iour in deprived populations. Intervention recruitment and analysis and interpretation of data. They also contributed to the develop- methods were feasible, especially in non-medical commu- ment of the article including the plan for data analysis and participated in setting assignments and deadlines for written contributions. Each author provided nity settings, and the facilitated health check reached adults assigned written sections and reviews in a timely manner. All authors gave final from low socioeconomic groups. Prospective findings indi- approval of the version to be published and participated sufficiently in the work cated the health check’s potential to improve cancer aware- to take public responsibility for the appropriate portions of the content. All authors agreed to be accountable for all aspects of the work in ensuring that ness among adults living in deprived communities, which questions related to the accuracy or integrity of any part of the work are should be tested in the context of a controlled trial of ef- appropriately investigated and resolved. fectiveness. Longer-term, the health check may be imple- Ethics approval and consent to participate mented to empower communities most affected by cancer, The study materials and protocol were approved by NHS Health Research and may contribute to reducing socioeconomic inequalities Authority: National Research Ethics Service (Reference: 14/NW/1104) and all in cancer survival outcomes in the UK. participants gave written informed consent. Competing interests Endnotes The authors declare that they have no competing interests. Increasing knowledge or understanding Increasing means and reducing barriers to increase Publisher’sNote capability (beyond education or training) or opportunity Springer Nature remains neutral with regard to jurisdictional claims in (beyond environmental restructuring) published maps and institutional affiliations. Using communication to induce positive or negative Author details feelings to stimulate action 1 Division of Population Medicine, Cardiff University, 1st Floor, Neuadd Changing the physical or social context Meirionnydd, Heath Park, Cardiff CF14 4YS, UK. Tenovus Cancer Care, Gleider House, Ty-Glas Rd, Cardiff CF14 5BD, UK. King’s College London, Strand, London WC2R 2LS, UK. Centre for Trials Research, Cardiff University, Heath Additional files Park, Cardiff CF14 4YS, UK. Received: 9 January 2018 Accepted: 24 May 2018 Additional file 1: National Awareness and Early Diagnosis Initiative (NAEDI). This file further describes the influence of socioeconomic status on cancer survival and premature mortality in the United Kingdom. (PDF 124 kb) References Additional file 2: Intervention questions. This file details all questions that 1. Mastrangelo G, et al. Endotoxin and Cancer chemoprevention. Cancer participants completed during the health check intervention. (DOCX 15 kb) Epidemiol. 2013 Oct;37(5):528–33. 2. Maddams J, Brewster D, Gavin A, Steward J, Elliott J, Utley M, Møller H. Acknowledgements Cancer prevalence in the United Kingdom: estimates for 2008. Br J Cancer. We would like to thank Ian Lewis and the ABACus project management 2009;101(3):541–7. team members Tim Banks and Maura Matthews from Tenovus Cancer Care 3. Cancer Research UK (2015a) Cancer survival statistics[online] Available at: for their ongoing support and involvement in the project. The authors http://www.cancerresearchuk.org/health-professional/cancer-statistics/ would also like to acknowledge the support of the ABACus steering group: survival. Accessed 4 Dec 2017. Danny Antebi, Tracey Deacon, Karen Gully, Jane Hanson, Sharon Hillier, Alex 4. Sant M, Allemani C, Santaquilani M, Knijn A, Marchesi F, Capocaccia R. Murray, Richard Neal, Gill Richardson, Mark Rogers, and Sara Thomas. Eurocare working group. Survival of cancer patients diagnosed in 1995- 1999. Results and commentary. Eur J Cancer. 2009;45:931–91. Funding 5. Berrino FV, Lutz A, Lombardo J, Micheli C, Capocaccia A. EUROCARE This work was supported by Cancer Research UK [C16377/A17740.]. We are working group. Comparative cancer survival information in Europe. Eur J grateful to the National Awareness and Early Diagnosis Initiative (NAEDI) for Cancer. 2009;45:901–8. funding this work. The NAEDI funding consortium, under the auspices of the 6. Verdecchia A, Guzzinati S, Francisci S, DeAngelis R, Bray F, Allemani C, Tavilla National Cancer Research Institute (NCRI), consists of Cancer Research UK; A, et al. Survival trends in European cancer patients diagnosed from 1988 to Department of Health (England); Economic and Social Research Council; 1999. Eur J Cancer. 2009;45:1042–66. Smith et al. BMC Public Health (2018) 18:695 Page 11 of 11 7. Foot C, Harrison T (2011) How to improve cancer survival: Explaining research on health promotion: a systematic review. BMC Public Health. 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Rachet B, Ellis L, Maringe C, et al. Socioeconomic inequalities in cancer to use mental health services? Current knowledge and changing survival in England after the NHS cancer plan. Br J Cancer. 2010;103:446–53. perspectives pp 392–411 In A Handbook for the study of mental health: 10. Lyratzopoulos G, Abel G, Brown C, et al. Socio-demographic inequalities in Social contexts, theories and systems. New York: Cambridge University stage of cancer diagnosis: evidence from patients with female breast, lung, Press; 1999. colon, rectal, prostate, renal, bladder, melanoma, ovarian and endometrial 33. Quaife S, Forbes L, Ramirez A, et al. Recognition of cancer warning signs cancer. Ann Oncol. 2013;24:843–50. and anticipated delay in help-seeking in a population sample of adults in 11. Whitaker K, Scott S, Wardle J. Applying symptom appraisal models to the UK. Br J Cancer. 2013;110:12–8. understand sociodemographic differences in responses to possible cancer 34. Forbes LJL, Warburton F, Richards MA, Ramirez AJ. Risk factors for delay in symptoms: a research agenda. Br J Cancer. 2015;112:S27–34. symptomatic presentation: a survey of cancer patients. Br J Cancer. 2014; 12. Lyratzopoulos G, Saunders C, Abel G, McPhail S, Neal R, Wardle J, Rubin G. 111:581–8. The relative length of the patient and the primary care interval in patients with 28 common and rarer cancers. Br J Cancer. 2015b;112:S35–40. 13. Macleod U, Mitchell E, Burgess C, Macdonald S, Ramirez A. Risk factors for delayed presentation and referral of symptomatic cancer: evidence for common cancers. Br J Cancer. 2009;101:S92–S101. 14. Richards MA. The national awareness and early diagnosis initiative in England: assembling the evidence. Br J Cancer. 2009;101:S1–4. 15. Chatwin J, Povey A, Kennedy A, et al. The mediation of social influences on smoking cessation and awareness of the early signs of lung cancer. BMC Public Health. 2014;14:1043. 16. McCutchan GM, Wood F, Edwards A, Richards R, Brain KE. Influences of cancer symptom knowledge, beliefs and barriers on cancer symptom presentation in relation to socioeconomic deprivation: a systematic review. BMC Cancer. 2015;15(1) 17. Smith LK, Pope C, Botha JL. Patients' help-seeking experiences and delay in cancer presentation: a qualitative synthesis. Lancet. 2005;366:825–31. 18. Walter F, Webster A, Scott S, Emery J. The Anderson model of Total patient delay: a systematic review of its applications in cancer diagnosis. J Health Serv Res Policy. 2012;17(2):110–8. 19. Smits S, McCutchan G, Wood F, Edwards A, Lewis I, Robling M, et al. Development of a behavior change intervention to encourage timely Cancer symptom presentation among people living in deprived communities using the behavior change wheel. Ann Behav Med. 2016:1–15. https://doi.org/10.1007/s12160-016-9849-x. 20. Craig P, Dieppe P, Macintyre S, et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337: a1655–5. 21. Michie MS, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. BMC Implementation Science. 2011;6(42) 22. Michie S, Richardson M, Johnston M, et al. The behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: building an international consensus for the reporting of behavior change interventions. Ann Behav Med. 2013;46:81–95. 23. UK Government Alcohol Consumption: Advice on Low Risk Drinking (2011). Retrieved from https://www.gov.uk/government/publications/alcohol- consumption-advice-on-low-risk-drinking 24. UK Government Physical Activity Guidelines: Department of Health and Social Care (2011). Retrieved from https://www.gov.uk/government/ publications/uk-physical-activity-guidelines 25. NHS Choices: BMI Healthy Weight Calculator [online] Available at: https://www.nhs.uk/Tools/Pages/Healthyweightcalculator.aspx. Accessed 4 Dec 2017. 26. NHS Choices: 5 A Day [online] Available at: https://www.nhs.uk/LiveWell/ 5ADAY/Pages/5ADAYhome.aspx. Accessed 4 Dec 2017. 27. Simon AE, Forbes LJL, Boniface D, Warburton F, Brain KE, Dessaix A, et al. An international measure of awareness and beliefs about cancer: development and testing of the ABC. BMJ Open. 2012;2(6) 28. Marteau T, Bekker H. The development of a six-item short-form of the state scale of the Spielberger state-trait anxiety inventory (STAI). Br J Psychol. 1992;31(3):301–6. 29. Liljas AEM, Walters K, Jovicic A, Illiffe S, Manthorpe J, Goodman C, Kharicha K. Strategies to improve engagement of ‘hard to reach’ older people in http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Public Health Springer Journals

Feasibility and acceptability of a cancer symptom awareness intervention for adults living in socioeconomically deprived communities

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Medicine & Public Health; Public Health; Medicine/Public Health, general; Epidemiology; Environmental Health; Biostatistics; Vaccine
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Abstract

Background: Cancer survival rates in the UK are lower in comparison with similar countries in Europe and this may be linked to socioeconomic inequalities in stage of cancer diagnosis and survival. Targeted cancer awareness interventions have the potential to improve earlier symptomatic diagnosis and reduce socioeconomic inequalities in cancer outcomes. The health check is an innovative, theory-based intervention designed to increase awareness of cancer symptoms and risk factors, and encourage timely help seeking among adults living in deprived communities. Methods: A prospective, non-randomised evaluation was undertaken to test the feasibility and acceptability of the health check for adults aged 40 years and over living in deprived areas of Wales. Primary outcomes included recruitment and retention of approximately 100 adults, reach to participants in the lowest deprivation quartile, and intervention acceptability. Secondary outcomes included self-reported cancer symptom recognition, help-seeking behaviours and state anxiety pre/post intervention. Results: Of 185 individuals approached, 98 (53%) completed the intervention. Sixty-six of 98 participants were recruited from community settings (67%) and 32 from healthcare settings (33%), with 56 (57%) from the lowest deprivation quartile. Eighty-three (85%) participants completed follow-up assessment. Participants recognised on average one extra cancer symptom post intervention, with improved recognition of and anticipated presentation for non-specific symptoms. State anxiety scores remained stable. Qualitative interviews (n = 25) demonstrated that the intervention was well received and motivated change. Conclusions: Recruitment was feasible in community and healthcare settings, with good reach to adults from low socioeconomic groups. The health check intervention was acceptable and demonstrated potential for improved cancer awareness and symptom presentation, especially for non-specific symptoms, in communities most affected by cancer. Keywords: Cancer, Complex intervention, Qualitative, Behaviour change, Inequality, Symptom presentation, Feasibility, Awareness, Socioeconomic deprivation * Correspondence: Smithp18@cardiff.ac.uk Division of Population Medicine, Cardiff University, 1st Floor, Neuadd Meirionnydd, Heath Park, Cardiff CF14 4YS, UK Full list of author information is available at the end of the article © The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Smith et al. BMC Public Health (2018) 18:695 Page 2 of 11 Background To our knowledge this is the first study in the United Cancer is the leading cause of deaths in high income Kingdom to use an interactive touchscreen tablet as the countries [1] and research has shown that 42% of people technological component of a multifaceted, complex who died in the UK during 2008 had a cancer diagnosis intervention aimed at improving cancer awareness and at some point in their life, with tumours being the cause symptom presentation. of death in 64% of these patients [2]. Half of people diag- In accordance with the MRC framework for complex nosed with cancer in the UK survive for 10 or more interventions [20], developmental work to refine the years and this survival rate has doubled over the past health check was previously undertaken in phase 1 of 40 years [3]. However, UK survival rates have been con- ABACus (Awareness and Beliefs About Cancer) from sistently lower in comparison with similar countries in November 2014 to October 2015, and was informed by Europe [4–7] and this may be linked to socioeconomic a theoretical understanding of barriers and enablers to inequalities in stage of cancer diagnosis [8–10]. The “pa- timely help seeking among people living in disadvan- tient interval” is defined as the time between appraising taged communities [19]. During phase 1, the Behaviour a bodily change as a potential symptom of cancer and Change Wheel [21] was used to refine the delivery and presenting in primary care [11]. The patient interval ac- content of the health check through a systematic process counts for the greatest proportion of time in the path- involving the identification of four intervention func- 1 2 3 way from discovering a symptom to the start of cancer tions (education, enablement, persuasion and environ- treatment [12], and has been found to lengthen with in- mental restructuring ) and corresponding behaviour creasing socioeconomic deprivation [13]. The revised change techniques to include in the intervention [22]. NAEDI (National Awareness and Early Diagnosis Initia- Importantly, the health check is facilitated by a lay ad- tive) pathway (see Additional file 1) describes the influ- visor who is trained to engage participants and deliver ence of socioeconomic status on cancer survival and theory-based behaviour change techniques. premature mortality in the United Kingdom [14]. The The purpose of the current study (ABACus phase 2) NAEDI pathway hypothesises that background factors was to test the feasibility and acceptability of the health such as low public awareness, barriers to help-seeking check intervention in community and health care set- and negative beliefs about cancer can negatively influ- tings in socioeconomically deprived areas. Specific objec- ence presentation to primary care. tives were to conduct a before and after questionnaire Barriers to early cancer symptom presentation include study to evaluate feasibility of recruitment, reach to and lack of knowledge about potential cancer symptoms retention of the target audience (primary outcomes), po- [15], fatalism and denial [16], fear of treatment and diag- tential for change in cancer symptom recognition and nosis, fear of dying [17] and misinterpretation of symp- help-seeking intentions/behaviours and unintended con- tom seriousness [18]. A systematic review of the sequences relating to anxiety (secondary outcomes), and influences of awareness and beliefs on symptom presen- to carry out qualitative interviews to understand how tation demonstrated that fearful and fatalistic beliefs the intervention was viewed by adults living in deprived about cancer are associated with longer symptom pres- communities. entation times in individuals from areas of socioeco- nomic deprivation [16]. Evidence-based initiatives that Methods aim to increase awareness of potential cancer symptoms The research was conducted in line with the MRC guid- and minimise barriers to early cancer diagnosis among ance for development and evaluation of complex inter- people living in deprived communities have the potential ventions [20]. The study materials and protocol were to improve cancer outcomes and reduce socioeconomic approved by NHS Health Research Authority: National inequalities [11, 18]. Research Ethics Service (Reference: 14/NW/1104) and The health check is a theory-based intervention de- all participants gave written informed consent. signed and developed in a previous phase of work undertaken by the authors in partnership with Tenovus The intervention Cancer Care, a Welsh cancer charity. The aim of the The health check is a tablet-based interactive touchsc- health check is to improve awareness of cancer symp- reen questionnaire that takes around 30–45 min to toms and risk factors, encourage positive beliefs about complete and is delivered face-to-face by a trained lay early detection, and increase motivation to seek help advisor. The touchscreen questionnaire includes 26 among adults living in socioeconomically deprived com- questions covering the domains of personal history munities. The intervention is primarily designed to re- (“About you”), lifestyle (“Your lifestyle”) and symptom duce the patient interval, but also includes advice on experience (“Your health”) (see Additional file 2 for full cancer screening and lifestyle risk factors in order to list of questions). Personalised results are given in a traf- synergise early detection and prevention messages [19]. fic light system, with ‘green’ indicating results where no Smith et al. BMC Public Health (2018) 18:695 Page 3 of 11 signposting or change is suggested, ‘amber’ indicating an First was a Welsh Government programme that focused area where signposting or change could be considered, on tackling poverty by supporting the most disadvantaged and ‘red’ results indicating that action should be taken. people in the most deprived areas of Wales. Non-English Categorisation of results for lifestyle risk factors is based speakers and those unable to give informed consent were on existing NICE, NHS and government guidelines [23– excluded. Participants were approached at each site by a 26]. Manualised advice and signposting to relevant member of the research team and provided with study services (for example General Practitioner, local stop materials. Participants were offered a £10 high street smoking services and weight loss services) are provided shopping voucher after completion of the baseline ques- by the lay advisor based on the personalised results. At tionnaire and intervention. A further £5 high street shop- the end of the health check, participants receive a print- ping voucher was offered at completion of the one month out of their results and a brief action plan. The health follow-up questionnaire. check content, underpinning intervention functions and The purposive sampling framework consisted of ten behaviour change techniques are detailed in Table 1. settings across two study sites. Participants were re- cruited from settings identified during phase 1: three Sample community based locations (local community groups, Participants were adults aged 40 years and over recruited one-to-one sessions, local events) and two healthcare opportunistically in healthcare and non-medical commu- settings (GP practices, community pharmacies). Existing nity settings in “Communities First” areas. Communities community contacts, such as Communities First staff Table 1 Health check intervention content Intervention Description of Purpose of component Summary of Behaviour change Example of application components component intervention techniques [22] within the intervention functions Touchscreen Background information about Contextual information Education, Information Information about the questionnaire: the participant including personal about potential risk persuasion, about health benefits of early diagnosis. “About you” and family history of cancer, body factors for cancer. environmental consequences , Information about factors (7 questions) mass index and cancer screening restructuring prompts/cues that may increase the risk of attendance . developing cancer (e.g. being overweight). Questions about previous engagement with cancer screening. Touchscreen Diet, smoking, alcohol Contextual information Education, Information Signposting to local services, questionnaire: consumption and about potential risk persuasion, about health such as Stop Smoking Wales. “Your lifestyle” physical activity. factors for cancer. enablement consequences, Encouragement to pass the (5 questions) credible information on to friends source , social or family. support Touchscreen Cancer warning signs Contextual information Education, Information Signposting to General questionnaire: and symptoms about potential symptoms persuasion, about health Practitioner. “Your health” (see Additional file 2) of cancer. environmental consequences, Information about cancer (14 questions) restructuring prompts/cues, warning signs and symptoms credible source to encourage early presentation within three weeks of noticing a potential symptom (now and in the future). Personalised Displays a printable Provides participants with Education, Information Participants complete the results summary of the an overview of their health enablement about health following statement: individual’s results check results, to act as a consequences, “If I notice a symptom, I will go and action prompt for change action planning , and see my ________ (for example, to present (e.g. discussion at their goal setting within _______ of noticing to their General Practitioner GP appointment). the symptom”. with potential cancer symptoms). Remind participants about the benefits of early diagnosis. National cancer screening programmes in Wales include bowel (every two years for men and women, aged 60–74), breast (all women aged 50–70) and cervical (women aged 25–49 every three years, women aged 50–64 every five years) Providing information about health consequences of performing the suggested behaviour Introduction and definition of environmental or social stimulus with the purpose of prompting or cueing the suggested behaviour Presenting verbal or visual communication from the credible source in favour of or against a behaviour Advising on practical and emotional social support (e.g. from friends or family) Prompt detailed planning of performance of the behaviour (e.g. inclusion of context, frequency, duration and intensity) Setting or agreeing a goal defined in terms of behaviour to be achieved Smith et al. BMC Public Health (2018) 18:695 Page 4 of 11 and community pharmacy managers, facilitated the iden- away’,‘losing weight without trying to’). Response options were tification of settings. recoded to create a binary measure of anticipated symptom presentation (‘more than 3 weeks’ and ‘under 3 weeks’). Data collection procedures Data regarding the number of participants who were State anxiety The short-form state scale of the State Trait approached, agreed to participate, completed the base- Anxiety Inventory (STAI) [28] was included to measure line questionnaire, and completed one month follow-up unintended negative consequences of taking part in the were collected by the researcher (PS). Baseline question- health check. naire data were collected by PS, who had relevant train- ing in qualitative research methods. The data were Process evaluation measures Three questions were in- captured on computer based forms using an iPad, for cluded to evaluate intervention acceptability: ‘How useful direct capture to a secure Cardiff University server. The did you find the information in the health check?’ (‘not health check took place in a suitable private room with at all useful’, ‘somewhat useful’, ‘moderately useful’ and the lay advisor present. One month follow-up took place ‘very useful’); ‘What did you think about the amount of by telephone and those who were unable to be contacted information in the health check?’ (‘not enough’, ‘about after three attempts were sent a postal version of the right’ and ‘too much’), and ‘Would you recommend the questionnaire and a pre-paid envelope. health check to friends or family?’ (‘yes’ or ‘no’). Socio-demographic characteristics Qualitative interviews The baseline consent form in- Socio-demographic characteristics were gathered on age, cluded permission to contact participants regarding further sex, education level, employment status, ethnic origin, participation in process evaluation interviews after they home/living arrangement and relationship status. Socio- completed the one month follow-up questionnaire. Partici- economic group was assessed by matching postcodes to pants were sampled using maximum variation sampling the Welsh Index of Multiple Deprivation (WIMD) (lower based on age, gender and intervention location, and inter- super-output areas). viewed after completion of one month follow-up. Study re- cruitment materials were posted to those who expressed an Outcome measures interest and the researcher contacted respondents to ar- Primary outcomes range a time, date and location to carry out the interview. Primary outcomes included recruitment of 100 partici- Participants were also given a £10 shopping voucher after pants within a four month period, recruitment of at least the interview. Face-to-face interviews were conducted by 50% of participants in the lowest deprivation quartile, PS and explored use of the health check, views and and a loss to follow-up rate of no higher than 30%. feedback on acceptability of the health check setting, and perceptions of whether any indicated change in behaviour Secondary outcomes was acceptable and supported by friends/family members. Cancer symptom recognition Cancer symptom recog- Analysis Data regarding recruitment, retention rates and nition was measured using items adapted from the vali- socio demographic characteristics of participants were sum- dated ABC measure [27]. Recognition of potential marised. Questionnaire data were summarised with an arith- cancer symptoms was assessed using the question stem metic mean, and the crude mean change in total cancer ‘Please tell us if you think the following are warning signs symptom recognition score from baseline to one month of cancer’ followed by a series of cancer symptoms. follow-up was analysed. Where participants failed to respond Symptoms included in the ABC were adapted to assess to individual items within an instrumentata specific time recognition of 14 symptoms that were included in the point, but completed more than 75% of items, an arithmetic intervention. Responses were dichotomised for analysis average was imputed for the items that they failed to answer. (i.e. ‘yes’ versus ‘no/don’t know’), with ‘yes’ responses Participants who were recorded as having missing instru- summed to derive a total cancer symptom recognition ment data were not included in the analysis population. score with a score range of 0 to 14 [27]. Descriptive statistics were used to assess proportions of indi- vidual cancer symptoms recognised and anticipated time to Anticipated symptom presentation The ABC measure symptom presentation at baseline and one month. Statistical [27] was adapted to assess anticipated time to presentation analysis was carried out using IBM SPSS Statistics V.23. for symptoms that could indicate cancer. To reduce partici- The anonymised process evaluation interviews were pant burden, anticipated presentation was anchored to two analysed thematically by PS using NVivo. An inductive classic cancer symptoms (‘an unusual lump’, ‘blood in your approach to the data was adopted which involved famil- poo’) and two non-specific symptoms (‘acoughthat won’tgo iarisation with the data, coding and searching, reviewing Smith et al. BMC Public Health (2018) 18:695 Page 5 of 11 and defining themes that emerged. Dual coding of 20% Socio-demographic characteristics of the interview transcripts was conducted by SS and Baseline socio-demographic characteristics of the 98 re- KB, and discrepancies were resolved through discussion. spondents are shown in Table 1. Sixty-one percent of participants were aged 60 years or more and 65% were female. Fifty-seven percent of participants were from the Results lowest WIMD deprivation quartile. Fifty-one percent or Primary outcomes participants were retired and 55% had no formal educa- Study recruitment tion. Ninety-three percent of the participants described One hundred and eighty five people were approached to their ethnic origin as British and 12% reported having take part in the study and 103 (56%) agreed to partici- ever had a cancer diagnosis (Table 2). pate. Five of those who agreed to take part did not meet the inclusion criteria. A total of 98 people were eligible Secondary outcomes (95%) and 100% of these completed the baseline Cancer symptom knowledge questionnaire and intervention. There was a loss to Participants recognised on average one extra cancer symp- follow-up of 15% with 83 participants (85%) completing tom post intervention, with an average total symptom rec- the one month follow-up assessment. Sixty-six partici- ognition score of 10 (score range: 0–14) at baseline and 11 pants (67%) were recruited in community settings and (score range: 0–14) at follow up. As shown in Table 3, 32 (33%) were recruited in healthcare settings. Figures baseline ceiling effects were observed for recognition of demonstrating intervention feasibility, including rates of specific cancer symptoms including lump (95%), rectal completion using telephone and postal follow-up bleeding (94%) and a change in how skin looks (91%). The methods, are presented in Fig. 1. highest potential for improved symptom recognition was Fig. 1 Study recruitment Smith et al. BMC Public Health (2018) 18:695 Page 6 of 11 Table 2 Sample characteristics State anxiety The mean state anxiety score was 33.4 (SD = 12.6, range Variable Descriptive statistic 20–80) at baseline and 34.3 (SD = 11.5, range 20–63) at N* % one month follow-up. Scores at both time points were Age, years within the normal range [28]. 40–49 18 18 50–59 20 21 Process measures of acceptability >60 60 61 Sixty-four participants (77%) at one month follow-up de- Sex scribed the information in the health check as very useful, with 13 participants (16%) describing it as moderately use- Male 34 35 ful and six (7%) as somewhat useful. Seventy-five partici- Female 64 65 pants (90%) thought the amount of information in the Deprivation Quartile health check was about right, three (4%) thought there Most deprived 56 57 was too much, and five (6%) said there was not enough in- Second most deprived 20 21 formation. All 83 respondents (100%) said that they would Second least deprived 19 19 recommend the health check to their family or friends. Least deprived 3 3 Qualitative interviews Employment status Thirteen men and 12 women were interviewed, with a Employed 21 21 mean age of 66 years (range: 40–82). Interviews were on Unemployed 27 28 average 25 min long (range 14–43 min). Key themes in- Retired 50 51 cluded intervention acceptability and changes in symp- Highest level of education tom awareness and behaviour. Sample quotes are presented in Table 4 and referred to within the text in No formal qualification 54 55 parentheses. GCSE or equivalent 19 20 Higher education below degree level 16 16 Intervention acceptability Degree level or higher 7 7 The rapport that was built between the lay advisor and the Other 2 2 participant was an important aspect of intervention ac- Ethnic origin ceptability. Participants felt as though they were listened to and could therefore discuss sensitive topics during the Welsh/English/Scottish/ Northern Irish/ British 91 93 health check (A). Participants’ overall views and experi- Bangladeshi 1 2 ences of doing the health check were positive and they African 2 2 found the content of the intervention engaging. Further- Caribbean 2 2 more, participants reported that being approached in a Other 2 1 community setting to talk about cancer was acceptable. It Cancer diagnosis was felt that the friendly and informal nature of the inter- vention made for a pleasant, empowering experience and Yes 12 12 health check users enjoyed having the opportunity for fo- No 86 88 cused discussion on their health (B). *N = 98, no missing data A range of preferences were expressed for completion of the onscreen health check questionnaire. Older par- ticipants expressed a preference for the lay advisor to fa- observed for unexplained change in appetite (41 to 65%), cilitate completion of health check. However, some feeling bloated on most days (37 to 52%) and problems participants felt confident in completing the health when peeing (50 to 66%). check on the iPad. Both methods of delivering the health check were found to be acceptable and the tailored na- ture of the intervention meant that either method could Anticipated symptom presentation be easily implemented (C). As depicted in Fig. 2, the largest improvement in antici- Participant feedback regarding the intervention content, pated time to symptom presentation was for persistent such as the information presented and the language used, cough (32%), followed by unintended weight loss (14%). demonstrated that it was acceptable to users. Participants Anticipated symptom presentation increased by 6% for did not express any difficulties with understanding the in- blood in stools and increased by 2% for an unusual lump. formation given to them during the health check and Smith et al. BMC Public Health (2018) 18:695 Page 7 of 11 Table 3 Cancer symptom recognition at baseline and one month follow-up Cancer symptoms (answered: ‘yes’) Baseline descriptive One month descriptive statistic (n = 98) statistic (n =82 ) n% n % A cough that won’t go away 75 77 63 77 An unusual lump 93 95 73 89 A change in how your skin looks 89 91 72 88 A sore or ulcer in your mouth that will not heal 68 70 65 79 A change in your poo 77 79 67 82 Blood in your poo 92 94 76 93 Problems when peeing 49 50 55 66 Unexplained bleeding (e.g. blood in urine, rectal bleeding, vaginal bleeding during/after 83 85 72 88 sex or in between periods) Difficulty swallowing 63 64 59 72 Losing weight without trying to 85 87 66 81 Feeling bloated on most days 36 37 43 52 An unexplained change in your appetite 40 41 53 65 Feel tired most of the time 57 58 53 65 An unexplained pain that won’t go away 73 75 61 75 Ns vary due to missing data for individual items in the cancer symptom recognition measure. Items where data were missing have been indicated 1,3,6 2,4,5 ( missing data for 2 participants, missing data for 1 participant). One participant answered < 75% of the measure and was excluded from the analysis Wording of the symptoms reflect those used in the intervention thought it was delivered in an easy to understand, user indicated). These participants felt they already knew about friendly manner (D). Some participants mentioned that certain cancer symptoms and that some risk factors were the health check was slightly repetitive and that there was not relevant to them. They therefore considered that too much information (E). in-depth coverage of these areas was not beneficial (G). Some symptom questions in the health check, such as Distance to travel to do the health check was generally feeling bloated and losing weight without trying to, were considered by participants to be convenient and the ability difficult for some participants to answer. This was mainly to easily access the health check was described as import- due to the older age of the sample and potential for co- ant. Many of the health check locations were situated cen- morbid health issues that gave rise to some participants trally within deprived communities and at a venue where experiencing symptoms included in the health check (F). potential participants would attend during the day (H). While the results section was generally acceptable to participants, some felt that exploring “green” results Changes in symptom awareness and behaviour (where no action was suggested) was not as beneficial as Participants described making changes to their lifestyles discussing “amber” or “red” results (where action was since taking part in the health check, including improving Fig. 2 Anticipated time to symptom presentation: proportion stating that they would present within three weeks at baseline and follow-up Smith et al. BMC Public Health (2018) 18:695 Page 8 of 11 Table 4 Example quotes from process evaluation interviews Coding Example quotes Text reference Intervention acceptability “Very personable, very approachable, a good listener. Took on board what I had to say, even A though parts of it, because I talked about my Mum, I was quite upset.” Female, 48 “It was more of a very friendly discussion about the areas that I could look at to improve, B to give myself a better chance of surviving longer.” Male, 49 “If there was a question that I wasn’t sure of, and it was sort of, say there was three different C answers you could answer, and that answer wasn’t there, then I’d find it difficult, again I think that’s a generation thing, I’d rather verbally, rather than a screen or impersonal then put it that way.” Female, 63 “It was understandable, easily understandable. It wasn’t difficult to understand and it was in plain D English, which I thought was good.” Female 71 “Personally I thought it was a little bit too much, to take in in one go, you just want to come out E and come home, and said to my girls, I said well I can’t tell you, I wouldn’t have a clue. It’s too much to take in, there was a lot that I didn’t know, but I thought there was a lot to take in, again a little bit repetitive.” Female, 63 “Some of the questions would be, not really concerned with, like this one ‘have you been losing F weight without trying to?’ Yes or no, with me I’m on so many tablets, some months I put weight on, so it’s not difficult to answer it correctly but it’s a little bit of controversy, if you see what I mean?.” Female, 63 “In my head I was thinking, I already know that, I want you to talk to me about the things that G did flag up, to me that’s the important bit, I need to know more about that so I can change.” Male, 50 “Very convenient. If I had to travel somewhere I don’t think I would have gone. Because it was H here and I didn’t have to go out my way it was much easier.” Male, 50 Changes in symptom “My daughter now will, instead of making chocolate sandwiches for work, I will do her a pasta I awareness and behaviour salad and things like that so they love it, they love the change.” Female, 40 “Let’s have a look at what I am eating, what I am drinking, what I am smoking. All the, what I am, J what I thought was reasonable, some of them are not so reasonable, and I do need to back track and think. And I have.” Male, 49 “I am cautious about myself, especially for example when I am changing from day clothes to K evening pyjamas or when I am in the shower, I have a big mirror in my bathroom so I do tend to look over my body, so that shows me various things, and I reveal those to my GP when I go to see him” Male, 65 “I didn’t really know that, if you had a persistent cough you should go and see about it because L I would have thought it’s just sore throat or something.” Male, 56 years “I didn’t realise all the symptoms. It was informative, eye opening” Female, 40 years M their diet, engaging in more physical activity and decreas- dressed, was mentioned and suggests that since doing ing alcohol consumption. The importance of social net- the health check many participants found this behaviour works, such as family and friends, in supporting these change to be manageable and easy to adopt (K). changes was reported by participants. Receiving social Participants reflected on new knowledge that they had support meant that participants were more motivated to obtained from the health check about presenting to their continue eating a healthy diet and these changes could in GP with vague cancer symptoms, such as a persistent turn positively impact family members (I). cough. Before taking part in the intervention, partici- The intervention made participants think more about pants discussed not having previous knowledge of these their health in relation to their age and acted as a prompt potential symptoms and that the intervention offered to consider making changes to their diet, smoking habits new information about the importance of presenting to and alcohol consumption (J). Many participants described the doctor (L, M). the health check as an opportunity to identify areas of their health and lifestyle that they could improve. Discussion Participants discussed the importance of checking for To our knowledge the current study is the first to evaluate potential symptoms of cancer, and many participants re- a community-based intervention designed to increase can- ported carrying out health protective behaviours, such as cer awareness and encourage early symptom presentation checking for lumps in the shower, since taking part in among adults living in deprived communities. The current the intervention. The ability to integrate these behav- feasibility phase was an opportunity to explore contextual iours into a daily routine, such as showering or getting factors relating to recruitment settings and to enhance the Smith et al. BMC Public Health (2018) 18:695 Page 9 of 11 intervention in preparation for a future trial of effective- acceptability. As well as being an acceptable means of ness. The health check intervention was found to be ac- engaging participants, the health check was considered ceptable to participants and was feasible to deliver within to be useful and easy to understand in terms of its infor- community and healthcare settings, with evidence of mation content. With a growing body of evidence sug- reach to individuals from low socioeconomic groups. gesting that individuals with low health literacy are more We found strong support for the proposed theoretical likely to misunderstand health-related information [30], mechanisms of change likely to positively influence can- and potential for low health literacy in the target popula- cer awareness and behavioural outcomes. During phase tion, it was essential that the health check content was 1 of ABACus, the Behaviour Change Wheel [21]was accessible and comprehensible. Participants were recep- used to guide the selection of intervention functions and tive to the information delivered in the health check, content. One of the key functions that was identified and described the importance of having the lay advisor during the developmental phase as being integral to the present to empower and encourage them. However, health check was environmental restructuring [19], with intervention feedback from the qualitative interviews the present study providing evidence that this aspect suggested that the duration of the health check and was integral to the acceptability and feasibility of the repetition of content were undesirable, indicating a need intervention. The intervention restructured the physical for content refinements to further enhance intervention and social environment through delivery in non-medical acceptability. community settings, and through provision of social en- The current feasibility study presented an opportunity couragement and support from a lay advisor who was to examine the change processes underpinning the health able to build rapport with participants. Findings from check, and therefore its potential to influence outcomes the qualitative interviews confirmed that these mecha- relating to cancer awareness in socioeconomically de- nisms were practicable to implement and agreeable to prived groups. Evidence from the prospective question- participants, and that the lay advisor was perceived as a naire study indicated that the combination of intervention trusted source of information and advice about cancer functions reflecting education, persuasion and enablement awareness and lifestyle risks. These findings are promis- may encourage symptom awareness and motivate behav- ing, and support the recommendations of a systematic iour change [19]. As well as increasing knowledge and review [16] for interventions that target local communi- awareness, an important function of the health check is to ties as a way to encourage timely cancer symptom pres- counter fearful and fatalistic beliefs about cancer [11, 31] entation among people from low socioeconomic groups. using persuasive and empowering messages delivered by a The health checks took place at convenient local com- trained lay advisor. The inclusion of theory-derived mech- munity venues using opportunistic recruitment pro- anisms may therefore explain the potential for change that cesses, thereby removing practical barriers to access was observed for recognition of non-specific cancer symp- such as difficulties with transport. Interview participants toms and anticipated help-seeking behaviour in the described the suitability of the health check locations. current phase. Additionally, quantitative data indicated The current research suggests that community-based that all participants at one month follow-up had recom- recruitment methods are essential for engaging deprived mended the health check to their friends or family, dem- populations in cancer awareness interventions. Although onstrating the potential for health check messages to it was feasible to recruit in both community and health- harness the ‘lay system’ of health care [32] and to reach in- care settings, recruitment rates were higher in community dividuals within surrounding social circles. Public aware- venues such as health events, sheltered housing and food ness of vague cancer symptoms is poor, especially among banks. A recent systematic review [29] found that facilita- low socioeconomic groups [33] and therefore targeted tors for involving ‘hard to reach’ groups in health promo- community-based cancer awareness interventions should tion interventions included the use of incentives and aim to raise awareness of vague, non-specific symptoms well-targeted community advertising. Although financial and tackle fear associated with going to the doctor, in incentives were given for participation in the current order to encourage early presentation. study, the health check was not widely advertised. We acknowledge the limitations of conducting this Employing highly proactive recruitment strategies in fu- feasibility study in one location (socioeconomically de- ture research may help to further increase recruitment of prived areas of South Wales), and that the findings may the target population in healthcare settings. not be generalisable to other geographical areas. Partici- The health check intervention was successful in reach- pants were recruited using opportunistic sampling ing adults from low socioeconomic groups, with over methods, which may also limit representativeness. How- half of the sample (55%) having no formal qualification. ever, previous research has observed similar levels of can- In addition, study retention exceeded expectations and is cer knowledge, beliefs and barriers across Wales, England a further indicator of intervention feasibility and and Northern Ireland [34], hence the current findings may Smith et al. BMC Public Health (2018) 18:695 Page 10 of 11 be applicable and the intervention itself transferable to Health & Social Care R&D Division, Public Health Agency (Northern Ireland); National Institute for Social Care and Health Research (Wales) and the other deprived areas of the UK. The effectiveness of the Scottish Government. We acknowledge the support of the National Institute health check in increasing cancer awareness and for Health Research (NIHR) Biomedical Research Centre at South London and help-seeking behaviour should therefore be tested in the Maudsley NHS Foundation Trust and King’s College London. context of a multi-centre controlled trial. In addition, al- Availability of data and materials though the ABC measure has been internationally vali- The datasets generated during and/or analysed during the current study are dated [27], its validity in the context of socioeconomic available from the corresponding author on reasonable request. deprivation is unclear and future research should aim to Authors’ contributions psychometrically test the adapted ABC measure for use PS established writing assignments and deadlines for written contributions and with individuals from lower socioeconomic groups. co-author reviews, and ensured an open forum for co-authors to share their concerns and suggestions. PS compiled drafts, distributed them for review, and provided specific direction for reviews and revisions as well as ensuring that all Conclusion ethical considerations were addressed. SO contributed heavily with data The current research generated evidence about collection and recruitment feedback. KB was the principal investigator and theory-based mechanisms of change that are likely to over- designed the study with BC who was the author for the statistical analysis plan and directed the analysis as the trial statistician. All other authors (SS, FW, AE, GM, come barriers to cancer awareness and help-seeking behav- MR and JT) made substantial contribution to the study design, acquisition of data iour in deprived populations. Intervention recruitment and analysis and interpretation of data. They also contributed to the develop- methods were feasible, especially in non-medical commu- ment of the article including the plan for data analysis and participated in setting assignments and deadlines for written contributions. Each author provided nity settings, and the facilitated health check reached adults assigned written sections and reviews in a timely manner. All authors gave final from low socioeconomic groups. Prospective findings indi- approval of the version to be published and participated sufficiently in the work cated the health check’s potential to improve cancer aware- to take public responsibility for the appropriate portions of the content. All authors agreed to be accountable for all aspects of the work in ensuring that ness among adults living in deprived communities, which questions related to the accuracy or integrity of any part of the work are should be tested in the context of a controlled trial of ef- appropriately investigated and resolved. fectiveness. Longer-term, the health check may be imple- Ethics approval and consent to participate mented to empower communities most affected by cancer, The study materials and protocol were approved by NHS Health Research and may contribute to reducing socioeconomic inequalities Authority: National Research Ethics Service (Reference: 14/NW/1104) and all in cancer survival outcomes in the UK. participants gave written informed consent. Competing interests Endnotes The authors declare that they have no competing interests. Increasing knowledge or understanding Increasing means and reducing barriers to increase Publisher’sNote capability (beyond education or training) or opportunity Springer Nature remains neutral with regard to jurisdictional claims in (beyond environmental restructuring) published maps and institutional affiliations. Using communication to induce positive or negative Author details feelings to stimulate action 1 Division of Population Medicine, Cardiff University, 1st Floor, Neuadd Changing the physical or social context Meirionnydd, Heath Park, Cardiff CF14 4YS, UK. Tenovus Cancer Care, Gleider House, Ty-Glas Rd, Cardiff CF14 5BD, UK. King’s College London, Strand, London WC2R 2LS, UK. Centre for Trials Research, Cardiff University, Heath Additional files Park, Cardiff CF14 4YS, UK. Received: 9 January 2018 Accepted: 24 May 2018 Additional file 1: National Awareness and Early Diagnosis Initiative (NAEDI). This file further describes the influence of socioeconomic status on cancer survival and premature mortality in the United Kingdom. (PDF 124 kb) References Additional file 2: Intervention questions. This file details all questions that 1. Mastrangelo G, et al. Endotoxin and Cancer chemoprevention. Cancer participants completed during the health check intervention. 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