Patient Information: One Approach Fits All?

Bryans, A1, Price, R1, Gilhespy, R1, Hartop, K1, Jack, S1, Simpson, E1, Stillie, A2

1College of Medicine and Veterinary Medicine, Edinburgh, EH16 4SB
2Edinburgh Cancer Centre, Western General Hospital, Edinburgh, EH4 2XU


The evolution of healthcare spans centuries and reflects the way in which new knowledge has been applied and subsequently integrated into medical practice. There has been a distinct shift towards a mutualistic approach to delivering healthcare. Physicians must address increasingly complex patient expectations and ensure that patients understand their medical conditions. Providing solely verbal information has long been recognised to result in poor patient recall1, however identifying and developing a model to ensure the effective delivery of medical information is proving more challenging. Can one approach fit all?

The increasing numbers of patients taking responsibility for their own health can be partly attributed to the rising prevalence of chronic diseases. Projections indicate that 2.9 million people in the United Kingdom (UK) will be affected by more than one chronic disease by 20182. One of the most common long-term conditions is cancer. We conducted a pilot study at the Edinburgh Cancer Centre to examine the methods used to deliver information to patients receiving radiotherapy. This particular group of patients was selected for the study because the treatment and support for cancer patients is becoming increasingly complex and individualised as advances with targeted therapies complement the identification of the precise genetic abnormalities which give rise to cellular dysfunction. Therefore it is essential that patients receive information in a format which they can assimilate and understand. A questionnaire was distributed with questions relating to the patient’s personal background, their everyday use of technology and details of the correspondence and information they received from their healthcare team after diagnosis. The data was collected over a period of two days, yielding 63 responses which were then entered into a spreadsheet and analysed.

New technologies are not only influencing the way cancers can be diagnosed, but can also impact the methods by which this diagnosis is communicated and understood by patients. In the UK, 73% of adults used a computer every day in 2014 compared to 45% in 20063. Interestingly, the largest increase with respect to age was recorded in the over 65 group in which 42% used a computer every day in 2014 compared with 9% in 20063. This illustrates the considerable technological adjustment adopted by the UK population and the necessity for healthcare services to also adapt to this dramatic change. Adjustments in the doctor-patient relationship to ensure adequate time is invested to establish the preferred method of communication is vital to aid patients’ understanding and compliance. The provision of online materials for use in conjunction with clinician consultation may help to reduce the increasing pressure on cancer clinics4 and prevent a proportion of patients travelling long distances to consult a clinician5.

The opportunity to speak to patients in The Edinburgh Cancer Centre offered an insight into the lives of individuals receiving cancer treatment. Noticeably, patients’ needs varied considerably with respect to the degree of detailed information preferred and physicians should therefore be sensitive to the extent of information that patients wish to know. Patients also indicated that their information-seeking behaviour changed as their disease progressed and they entered different phases of treatment. In all cases our pilot study showed that a basic understanding of diagnosis and the available treatment options were especially important to patients. This is supported by other studies6 including a UK study which revealed that 87% of patients wished to be as informed as possible about their disease7. Interestingly, our results illustrated that only 64% of patients indicated that they ‘always’ felt comfortable asking questions in consultations despite the fact that health care professionals are the most valuable source of information to many patients8. This has a possible impact on the way in which people are offered the opportunity to ask questions during the consultation and further investigation could establish which consultation style is most successful to ensure optimum patient satisfaction.

We determined the demographic profile of each Edinburgh Cancer Centre participant by dividing occupation into skilled, semi-skilled, unskilled and unemployed, adapted from the Standard Occupational Classification 20109. Patients from semi-skilled or unskilled manual backgrounds have been demonstrated to have lower levels of internet usage8,10. Although our pilot study did not feature a sufficient sample size to obtain significance with regard to this social demographic information, it remains a crucial consideration for future studies. Unskilled workers are more likely to die from cancer and mortality rates are also higher in lower socioeconomic groups11. Reduced awareness and knowledge of the symptoms of cancer are demonstrated by individuals in deprived communities12. This suggests that health care professionals should consider the way in which information is offered to the patient with an appreciation for their specific needs and the resources available to them in order to maximise the chance of survival.

Physicians must establish the patient’s existing knowledge of their condition in order to structure the most appropriate explanation and advice. However, educating patients who have recently received a life changing diagnosis must clearly be approached carefully. Cancer often instils a sense of fear and uncertainty in individuals who can also be subject to stigmatising views within their community. It is important that explanations are communicated in a non-judgemental and objective manner in particular for conditions such as lung cancer, which are often viewed as involving a ‘self-inflicted’ element13. Our study revealed that breast and lung cancer patients knew the most about their disease prior to diagnosis. This finding highlights the increased public awareness of certain cancer types as a result of their prevalence, extensive media coverage and charity fundraising. Breast cancer patients have been shown to be the highest users of the internet, reflecting the volume of educational resources available for the disease14. Consultation with patients could therefore be structured to take into account the patient’s baseline knowledge and misconceptions in order to provide specific information to meet the needs of the patient. A Danish cancer patient satisfaction study highlighted the importance of assessing the patients’ current knowledge and also demonstrated that the psychological state of the patient can influence their perception of information they receive15. Assessing the patient’s expectations throughout their treatment will also help to tailor the information offered.

Language and level of disability must be considered when communicating information to patients. In the Edinburgh cohort, only two patients did not speak English as their first language. Patients were asked to specify their first language and any other language in which they were fluent. This data was valuable in order to understand the diversity of our study population and also to ascertain the extent to which language could be a communication barrier. The importance of considering cultural differences with respect to cancer prevalence and distribution was highlighted by the under-representation of the expected admissions of ethnic minorities based on census figures16. There is evidence to suggest that English speakers do have a greater understanding of their disease and that this correlates directly with improved quality of life17. Cancer as a disease can be perceived differently by ethnic groups who may also possess certain beliefs or misconceptions which impact their interpretation and demand for information17. Cancer is a disease which is more prevalent in older people18 and it is critical to fully understand the level of disability of a patient prior to consultation. Patients who have hearing, sight or memory loss present complex cases which require patience and understanding. Different methods of delivering information in the format of a DVD or audio tape should be offered to these patients.

Patients are turning to alternative resources for answers to their questions. The Edinburgh pilot study established that 95% of respondents used the information material provided during a consultation. The majority of patients (81%) preferred to use hard copy leaflets and this trend was apparent across all age groups. Our questionnaire included questions regarding sources of information and support in addition to that obtained during the physician consultation such as from family and friends and cancer groups such as Macmillan and Maggie’s Centres. Our results demonstrated that the majority of patients refer to multiple available sources for supplemental information. Specialist Macmillan nurses have been previously rated by patients to provide the highest quality of information whilst, although used by the majority of patients, communication by General Practitioners and written information was considered to be poor quality19. Interestingly, one patient who was interviewed at The Edinburgh Cancer Centre was asked about her attitudes towards alternative resources to leaflets such as DVDs and audio devices. The patient explained that she would not want to have to keep rewinding the tape to hear details back when she needed to access the information. This emphasised the fact that although alternative formats of delivering information can be beneficial, patients do appreciate and expect a paper-based form of information and it is therefore essential that this is of high quality. Although availability of online resources has broadened patients’ choices, the internet presents challenges with regard to the monitoring of information quality. Cancer patients in particular use the internet for information throughout each stage of their disease and can help patients to feel empowered and more in control of their own condition14. This is especially important with the increased prevalence of chronic diseases and guidance regarding trusted websites should be routinely added to hard copy patient information.

Discussions with patients at the Edinburgh Cancer Centre revealed the major value placed on sense of community and friendship. Patients were very interested in our study and willing to engage and communicate their views, clearly conveying that the methods of delivering information was of critical importance. The response rate to the questionnaires was high, measuring 70%. Patients were open to new interventions and demonstrated a strong desire to work with health services to advance research. It was evident that because cancer is a disease which transforms the lives of both patients and their families, interactions with health care specialists can significantly impact a patient’s experience of the disease. As treatments become increasingly targeted, the breadth of information and resources offered can be bewildering for patients if not delivered appropriately. Routinely auditing satisfaction and information usage will ensure that the healthcare system can monitor patients’ relationship with technology and the relationship with physicians. Patient information and education must be designed specifically for the needs of the patient, appreciating that one approach simply does not fit all.

Conflicts of interest
There are no conflicts of interests to declare.

Ethical Approval
This pilot study did not require further ethical approval from the NHS Health Research Authority. The study received internal ethical approval from the SSC4 programme of the Edinburgh University College of Medicine and Veterinary Medicine. Conduct of the research was in accordance with institutional guidelines.


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