The relationship between patient enablement and help‐seeking in the context of blood cancer symptoms

Approaches to improve earlier diagnosis of cancer often focus on symptom awareness as a key driver of help‐seeking behaviour and other psychological influences are less well understood. This is the first study to explore the role of patient enablement on help‐seeking for people experiencing potential blood cancer symptoms.


| BACKGROUND
The role of public awareness of cancer symptoms is well recognised, with health campaigns instigated globally to improve cancer symptom knowledge and encourage prompt help-seeking (defined as the time between perceiving a reason to seek medical help to first contact with a healthcare professional). 1 These campaigns show promise, with consistent evidence supporting improved knowledge, 2-6 and expedited help-seeking for potential cancer symptoms. 2,3 There is also evidence of a positive impact on diagnosis (incidence and stage), 3,6,7 although this is not as reliable, 6,8 and the longer-term impact on survival is harder to ascertain. 3 Given the potential and widespread adoption of public awareness campaigns, evidence to support their ongoing design and implementation is crucial. Campaigns to date have largely focussed on raising awareness of potential cancer symptoms, with other influences on help-seeking receiving less attention. One campaign promoting help-seeking by increasing knowledge of symptoms and approachability of doctors, only showed a positive impact on knowledge, whilst barriers to visiting the doctor (e.g. worrying about wasting the doctor's time) remained unchanged. 9 Understanding and addressing wider psychological influences on help-seeking behaviour may bolster efforts to improve awareness, help-seeking and earlier diagnosis.
Another limitation of research to date is that help-seeking has been treated as a one-off behaviour in response to experiencing a symptom. This is despite theoretical models emphasising the cyclical nature of help-seeking, 1 work showing that people can be deterred from future help-seeking following a false alarm, 10 and evidence for many cancers, including pancreatic, 11 bowel, 12 gynaecological, 13 brain, 14 and blood cancer 15 that symptoms are often ambiguous, intermittent and likely to require multiple help-seeking actions.
Against this backdrop, we designed and validated a Cancer Awareness Measure (CAM) to assess public awareness of blood cancer symptoms (Blood CAM), with the aim of measuring other psychological constructs relevant in the context of responding to ambiguous symptoms. Blood Cancer (a group of cancers including leukaemia, lymphoma and multiple myeloma) is the fifth most common cancer in the UK and the UK's third leading cause of cancer death. 16 However, so far has received less attention than other cancer types in understanding factors influencing the blood cancer diagnostic pathway. 17 We included an existing measure of patient enablement, defined as the patient's ability to understand and cope with illness and life after a consultation with a doctor. 18 The term is closely aligned with empowerment, because it relates to the extent to which a patient feels confident to manage their own healthcare after a medical encounter. 19 However, empowerment is broader, and can be considered a process or outcome achieved through patient centred-care, involving both patients and healthcare professionals across a range of constructs (e.g. enablement, shared decision-making). 20 Lower patient enablement is experienced by people living with multimorbidity, a long-standing health problem and those in deprived areas reporting higher emotional distress. 19 In an expansive study exploring associations with patient enablement across 31 countries (including over 7000 primary care doctors and nearly 60,000 patients), patient-level (e.g. younger age, lower propensity to seek care from a General Practitioner [GP]) and practice-level (e.g. rural vs. urban location) factors were associated with lower patient enablement. 21 However, less is known about the role patient enablement has on medical help-seeking. As well as including patient enablement, the Blood-CAM was designed to capture the requirement for multiple help-seeking actions, including help-seeking in response to a potential blood cancer symptoms and being more comfortable in reconsulting when symptoms persist, get worse or need further investigation.
We hypothesised that higher patient enablement would be associated with increased (1) likelihood of help-seeking in the context of experiencing a potential blood cancer symptom and (2) being more comfortable to reconsult if (a) the same symptom/health problem didn't go away or got worse, (b) after a test result suggested there was nothing to worry about, but symptoms persisted or (c) to request further tests, scans or investigations.

| Study design and setting
Cross-sectional online survey study in the UK population. Eligible participants were aged 18 years or over, resident in the UK and able to speak English. Data were collected between March and May 2022 by Dynata, an online panel provider (www.dynata.com). Quotas were placed on age, sex, social grade, ethnicity and UK region to recruit a nationally representative sample.

| Survey measures
A detailed description of the newly developed Blood Cancer Awareness Measure is described elsewhere 22 and involved careful patient and public involvement and clinician input.

| Long-standing illness/condition
Participants were asked if they have a diagnosis of any of the following health conditions; anaemia, arthritis, other autoimmune diseases (e.g. Lupus, multiple sclerosis), cancer, circulation problems, breathing problems (e.g. asthma or chronic obstructive pulmonary disease), depression or anxiety, diabetes, heart problems (e.g. angina or history of heart attacks), high cholesterol, high blood pressure, kidney problems, stroke, skin problems, bone, back, joint or muscle problems or "other."

| Patient enablement
Patient enablement was assessed with five items from the patient enablement instrument, for example, "Thinking about the last time you 1224 visited a healthcare professional at your GP practice about a symptom/ health problem, after the visit did you feel able to understand your symptom/health problem"). Patient enablement items were rated on a four-point response scale of 'Much better', 'Better', 'Same', or 'Less' with options for 'Not applicable' and 'I don't remember/prefer not to say'. A total score was developed in line with previous research as follows, "same or less" = 0, "better or more" = 1 and "much better" or "much more" = 2, giving a range of possible scores from 0-10. 18

| Help-seeking
People reporting at least one potential blood cancer symptom (e.g. unexplained bruising, lump(s) or swellings) in the last 6 months were asked whether they had sought medical help (how long after you first noticed [insert symptom] did you contact your GP practice, categorised as (No contact/Did contact). The symptoms were framed as "health symptoms" in the questionnaire.

| Re-consulting
All respondents were asked how comfortable they would feel reconsulting at their GP practice, on a 5-point Likert scale, if (a) the same symptom/health problem didn't go away or got worse, (b) after a test result suggested there was nothing to worry about, but symptoms persisted or (c) to request further tests, scans or investigations. For each item, these were categorised into those who disagreed or were neutral compared with those who endorsed the statements.

| Data analysis
Descriptive statistics are presented for the overall sample and those who sought medical help for potential blood cancer symptom in the last 6 months. Univariable associations for help seeking and reconsultation were explored for enablement and characteristics found to be important in previous research (age, sex, marital status, longstanding illness, education level) using chi-square. Sample size was based on estimates for new questionnaire validation, 23 rather than to address the current hypotheses. However, for chi square tests a sample size of 150 would achieve >80% power to detect moderate effect size (Cohen's w 0.3) at a significance criterion of α = 0.05. Multivariable logistic regression models were used to explore associations between help seeking and re-consultation with enabling adjusting for these same characteristics, and as an exploratory analysis we did not adjust for multiple comparisons. Analyses were conducted with Stata (16.1).

| Ethics
The study was approved by University of Surrey Ethics committee (FHMS 20-21 024 EGA).

| Response and patient characteristics
A total of 434 respondents (>18 years) completed the survey. Of those responding to the survey, 224/434 (51.6%) reported experiencing at least one blood cancer symptom. We include participant demographics for the whole sample and the sub-sample reporting potential blood cancer symptoms in Table 1. Details about the frequency of symptoms are reported elsewhere, 22  There were no other significant associations.
T A B L E 2 Univariable associations between patient enablement, help-seeking and re-consultation items.

| Summary of main findings
This large-scale national survey explored the role of patient enablement on likelihood of consulting a healthcare professional for potential cancer symptoms and explored how enablement was associated with being comfortable to reconsult. Contrary to our hypotheses, people scoring higher on patient enablement were less likely to seek help when they experienced potential cancer symptoms. However, they were more comfortable to re-consult when symptoms persisted, got worse or needed further investigation.
These findings demonstrate the added value of exploring wider psychological influences in cancer awareness measures, as well as capturing multiple help-seeking actions, including initial help-seeking and re-consultation behaviours that more accurately reflect the complex diagnostic process. The finding that patient enablement was differentially associated with help-seeking in response to experiencing a symptom and being more comfortable re-consulting has important practical implications for how to optimise help-seeking, particularly in response to ambiguous symptoms.
Older age was consistently associated with increased likelihood of help-seeking for potential cancer symptoms and being comfortable with re-consulting across all the different domains (persistence, symptoms worsening, requesting further tests). People with a longstanding illness were more comfortable to re-consult when symptoms persisted, and those educated to degree level were more comfortable to reconsult and request further tests, scans or investigations.

| Comparison with existing research
One potential explanation for our findings is that patients who feel more enabled feel confident to manage their own symptoms for longer before seeking help from a healthcare professional. Supporting this hypothesis, a recent systematic review found that self-management of symptoms (e.g. watchful waiting or trying over the counter treatment before visiting the doctor) was a barrier to help-seeking for cancer symptoms among older adults. 24 Given the overlap between self-care, enablement and empowerment, 20 this may explain why those scoring higher on patient enablement were less likely to seek help when experiencing a potential blood cancer symptom, particularly as these symptoms are often vague and non-specific (e.g. fatigue) and self-management in the first instance may be appropriate.
In keeping with this explanation, patient enablement did not adversely influence being comfortable to re-consult when symptoms persist or worsen and instead showed a positive association. Previous research has shown that when patients are reassured by a previous health investigation for symptoms they may be less likely to seek further help for persistent symptoms. 10 Our findings suggest that scoring higher on patient enablement is likely to afford protection against such negative consequences.
Our finding that older age was associated with increased likelihood of help-seeking and being comfortable to reconsult is also in line with the findings of the systematic review. 24 This has potential implications for younger peoples' experiences of help-seeking and reconsulting, particularly given the rise in incidence of early-onset cancers (i.e. cancers diagnosed in adults <50 years old). 25 Evidence from adolescents and young adults with cancer showed that they experience protracted journeys to diagnosis, 26 and are at risk of experiencing multiple consultations prior to diagnosis, particularly for lymphoma or bone tumours. 27 Developing public education campaigns to improve symptom awareness in younger people is a priority for teenage and young adult cancer research, 28 and these campaigns should also consider the role of patient enablement.
The finding that people with a longstanding illness were more comfortable to reconsult when symptoms persisted supports and extends previous research describing underlying mechanisms for how comorbidities can lead to both shorter and longer diagnostic intervals in cancer. 29 The surveillance hypothesis suggests that diagnosis may be quicker in people with existing conditions because they already experience routine monitoring. One potential explanation for this finding is that people with more experience of interacting with the healthcare system may feel more comfortable in re-consulting when symptoms persist.
People educated to degree level or above reported being more comfortable in requesting further tests than those without a degree, which mirrors previous findings where people with higher levels of education were more confident and assertive when accessing primary care for cancer symptoms during the COVID-19 pandemic. 30 Finally, our findings support theoretical models such as the Model of Pathways to Treatment (MPT), including the importance of psychological constructs such as the perceived ability to get help for potential symptoms (self-efficacy), and peoples' outcome expectancies about alternative actions (self-management) on the helpseeking interval, 1 but also suggests that this relationship is not always linear, in that enablement may not always lead to higher WHITAKER ET AL.

| Clinical implications
Demonstrating the differential role of patient enablement on helpseeking and re-consultation has important clinical implications, particularly given an ever-growing focus on supported selfmanagement in healthcare, where people are empowered to manage their ongoing conditions themselves. 31,32 Contrary to our hypothesis, people scoring higher on patient enablement were less likely to seek medical help when they experienced a potential blood cancer symptom, but were more comfortable to seek help in response to persistent symptoms, or to request further scans or investigations. Therefore, we need to strike a careful balance between ensuring people are enabled to manage symptoms/conditions at home, whilst seeking prompt medical help when they persist or worsen. An example of this balance would be to augment public awareness interventions with interventions to promote patient enablement in the post-consultation phase. Optimising the system in which the individual operates through the use of technology (e.g. remote symptom monitoring) 33 or patient navigators to prevent delays and other patient safety issues could ensure that people with lower patient enablement are not disadvantaged. 34 It will also be important to build on the momentum of public awareness campaigns and consider other psychological influences on help-seeking so that they can continue to evolve and have the greatest impact on early cancer diagnosis and survival. Our findings have implications for the use of theoretical approaches to develop interventions that encourage timely help-seeking. 35 For example, a previous intervention developed to encourage prompt help-seeking among people living in deprived communities argued that an intervention combining education and enablement could encourage timely help-seeking. 36 However, our study shows that bolstering enablement may be more influential in the post-consultation phase. It should be recognised that enablement as defined in the behaviour change wheel 35 is more encompassing (defined as "providing support to improve ability to change behaviour") and thus providing some granularity when developing interventions that bolster enablement will be crucial to their success. The finding that socio-demographic characteristics are associated with help-seeking and re-consulting suggests work should focus on co-creating campaigns with specific groups. For example, younger people who may be less likely to seek early medical help when experiencing cancer symptoms and less likely to reconsult when symptoms persist or worsen.

| Study limitations
This was a cross-sectional study, exploring associations and therefore conclusions in terms of causality cannot be made. Measurement of patient enablement involved asking participants about the last time they visited a healthcare professional at their GP practice, whilst help-seeking could have been any time in the past 6 months. Future prospective studies should aim to look at the causal relationship between patient enablement and help-seeking in order to have a more nuanced understanding of the clinical implications of these findings. It was not possible to ascertain a response rate due to the way the data was collected. However, quota sampling ensured the sample was representative of the UK population.
Patient enablement clearly plays a role in help-seeking for potential cancer symptoms, but more needs to be done to unpack this relationship. For example, previous research showed that cultural influences (e.g. long-term orientation, defined as focussing more on the future than the present) was associated with enablement and these factors vary at a country level (e.g. some cultures are more future oriented than others). 21 Wider contextual factors may also play a role in how people interact with the healthcare system and warrant further investigation in international studies. Patient enablement can also be measured adequately using a single-item, 21 and this should be a consideration for future research in terms of minimising the burden of self-report questionnaires.

| CONCLUSIONS
Patient enablement is differentially associated with help-seeking and re-consulting for symptoms in primary care. Efforts to optimise the efficacy of public health campaigns to encourage prompt helpseeking by targeting other psychological factors such as enablement will need a deeper understanding of their relationship with help-seeking behaviours to ensure they don't have unintended consequences.