Become ‘patient intelligent’ to cure treatment aversion

We all know that non-adherence is a big problem in the pharmaceutical market. Medication non-adherence is a major public health problem that the 1996 textbook Social and Behavioral Aspects of Pharmaceutical Care labelled an 'invisible epidemic'. In a September 1991 study in the American Journal of Hospital Pharmacy, non-adherence to pharmacotherapy was reported to range from 13 per cent to 93 per cent, with an average rate of 40 per cent. Non-adherence brings large costs for government and large losses for pharmaceutical companies.

There are several reasons for non-adherence and this article introduces the new term Patient Treatment Reluctance (PTR) to the non-adherence arena that should be identified in order to improve adherence.

New type of non-adherence
PTR describes cases of patients or their carers who exhibit behaviours of disinclination and thus lack of eagerness to be completely adherent to their therapy and/or treatment.

PTR is a term to outline the feelings and behaviour that patients or those responsible for patients can exhibit when they are not completely committed to the treatment that they or the person they are responsible for are receiving. These feelings can relate to complete or partial non-adherence with the treatment, which can, in turn, have serious effects on the outcomes of the treatment. 

PTR is not a direct refusal of treatment, as patients experiencing PTR do not reject treatment completely. They do, in fact, accept the treatment, but perhaps with a degree of trepidation. This concern can arise from a number of factors. It is important for everyone in healthcare to understand the patients they are working with and find out what is causing the reluctance and so focus on improving it. Therefore, it is important to consider how 'patient intelligent' we are when it comes to patients' reluctance to comply with the treatment provided. 

PTR highlights the importance of patients being fully informed about the treatment they are offered to allow them to make a knowledgeable judgement on it. They should be fully aware of the possible risks and outcomes of the treatment, both negative and positive, for themselves or for those in their care. This information can be provided by healthcare professionals or pharmaceutical companies through patient information leaflets and websites.

Those experiencing PTR may feel ignorance and confusion towards their understanding of the treatment process. The healthcare professionals may have made every effort to explain fully all areas of the condition and the process of the treatment, but the patients or carers may be unable to grasp a clear and succinct understanding of it.

This leaves them unsure of the treatment and even with feelings of confusion, uncertainty and lacking confidence in the treatment. Some feel that they are not in control, as they were not given freedom of choice regarding the treatment/prescription.

PTR is an attempt to be able to explain the feelings of helplessness that they as the patient or as the person responsible for the patient – for example, a young child – are experiencing. Recognising PTR in certain treatment areas is a first step to improving quality of healthcare through improving adherence.

Three factors can be identified in PTR. These are: psychological and emotional problems, socio-economic and everyday problems and technical  and handling problems.

An example of a psychological and emotional factor that could add to the PTR is the fear for the future of the patient. Patients are scared of administering medication where the long-term effects are not entirely clear. However, they know they have to adhere to the treatment, as they have been diagnosed. So they feel somewhat hesitant in taking their drug every day.

A socio-economic and everyday problem could include poverty, illiteracy and a low level of education, unemployment, poor social support networks, dysfunctional family relationships, unstable living conditions and cost of transport and medication, as well as cultural and unqualified beliefs about disorders and treatment. All these contributing factors were identified in a 2003 report on non-adherence to long-term therapies by the World Health Organisation.

Beside the problems mentioned, the technical nature of the treatment could also play a role in the non-adherence and reluctance patients portray with regard to the treatment. The preparation or consumption of a drug are sometimes considered rather difficult and the administration could require some skill as well. For example, in growth hormone treatments, the parents who administer them to their children are often confused, which is not beneficial for treatment.

A UK study published in 2011 in the Journal of Medical Economics reported that only 40.4 per cent of parents and children showed 'adequate understanding' about treatment with growth hormones. Furthermore, the authors Fritz Hverkamp and Christoph Gasteyger found that 30.3 per cent of parents and children 'had no clear idea what they were doing'.

Solutions
Pharmaceutical managers should recognise and identify the existence of PTR in their treatment area. They can do this by getting insights into the daily lives of patients. By diving into their lives and understanding the difficulties and insecurities involved, steps can be taken to help the situation.

Consider quantitative research, such as questioning a group of 200 patients about the process of their diagnosis. Where did they get their information and whom did they contact about the information they needed?

How satisfied were they with it and what were they missing? From a pharmaceutical point of view, this can help in improving communications to patients through patient leaflets and online activities. In addition, the information provided must be accurate at all times.

Patients want to be involved in their health, as was shown in a 2010 study undertaken by PIPHealth. A total of 150 GPs and 488 chronically ill patients completed a survey, which showed that patients were actively searching for information regarding their disease and would consult multiple sources.

While patients felt very well informed about their condition and treatment options, GPs were not as confident about what the patients actually knew. A vast majority of GPs perceived that the patients who presented them with information about their treatment options tended to be more undecided about it (see figures).

Another aspect of PTR that could be contributing to non-adherence is the feeling of not being in control.

The same study showed that, of the GPs surveyed, 99 per cent felt that they did involve the patient to some extent. Ideally, 94 per cent of the patients wanted to be involved in disease management decisions; 32 per cent of these wanted to be involved fully. Plus, 81 per cent of patients felt that they were involved in treatment decisions in some way.

Regarding treatment choices, patients were found to be standing up for their own preferences; 34 per cent of those surveyed said that they had asked for an alternative drug to the one suggested by the GP. Some 60 per cent of this group said that, after consultation, they received the drug they had asked for. These numbers show that the patients want to be more in control.

Furthermore, a pharmaceutical manager can attempt to validate common beliefs held within the team regarding the reasons for non-adherence. For example, ask whether the patient really thinks it is better to take a drug once a day rather than twice a day. Find out if the patients consider a side effect that has been highlighted as a problem does really have such an important impact on their daily lives.

Validating or dismissing the common beliefs can sharpen the campaign around a product and the patients will receive better communication and information, thereby conquering PTR and increasing adherence.

Imagine you are creating a smartphone application (app), for example, and you want to help your patients in monitoring their adherence through that app. The first step would be to find out what patients are looking for in the app and, at a later stage of development, let 20 patients use the app for a week in order to provide feedback. There are many more patient intelligent projects that can be identified, depending on the area of expertise.

Challenge yourself about how patient intelligent you are and what you know about adherence in your field and in so doing, gain understanding of a patient's treatment reluctance in order to improve the quality of healthcare for everyone.

The Author
Nadine van Dongen is the managing director of Patient Intelligence Panel (PIPHealth). She founded the company in November 2008 and introduced the concept of patient intelligence in the healthcare environment through running patient research studies. After working as marketing manager for years in a pharmaceutical company, she decided to set up her own business in giving patients a voice. With PIPHealth she has one bold aim: to help improve the quality of life for patients around the world by making all stakeholders in healthcare more 'patient intelligent'.