Shared decision making and experiences of patients with long-term conditions: has anything changed?

Prescription of medications is the most common intervention in healthcare [1, 2]. However, medication problems occurring during the transition of care/after hospital discharge are well documented in the literature [3‐5] and may lead to patient harm and hospital readmissions [5]. These difficulties are exacerbated because providers do not provide sufficient medication information to patients. The National Outpatient Survey (2011), found that only 43% of patients were confident that healthcare professionals (HCPs) were counselling them about all side-effects of their medications, (a decrease from 45% in 2009) [6].

Problems in medication usage are also documented in primary care especially among patients with long-term conditions (LTCs) [7]. These have been reported to negatively impact patients’ adherence and safety and lead to increased use of medical resources, such as physician visits, emergency department visits, hospital admissions and treatment failure [7]. An example of this would be chronic obstructive pulmonary disease (COPD), which is a chronic inflammatory condition that has been well documented in the literature to pose a high economic burden due to costly hospital admissions and medication wastage [8, 9]. Furthermore, poor adherence to medications and poor inhalation technique are widely reported problems among respiratory patients that lead to sub-optimal management and care, and increase the economic burden of COPD [9]. Therefore, some trusts such as Croydon University Hospital in the UK has established a rapid access clinic, referred to as “the respiratory HoT clinic” to improve the outcomes for COPD patients and prevent unnecessary hospital admissions. The service is managed by Croydon hospital respiratory team and provides the chance for patients to be seen by a specialist from secondary care in the primary care setting on the same day or next day, thus reducing the risk of accident and emergency visits due to sudden deterioration in their COPD condition [10].

Other measures to support LTCs management include medicine optimisation services offered by community pharmacists across many countries such as UK, United States, Canada and Australia [11, 12]. In England, cognitive services such as Medicine Use Review (MUR) and New Medicine Service (NMS) were introduced in the community pharmacy sector in 2005 and 2011, respectively as part of the government’s strategy to promote medicine optimisation and reduce medication wastage for patients suffering from LTCs [13]. According to the National Institute for Health and Clinical Excellence (NICE) guidelines [14], medicine optimisation requires a patient centred approach for safe and effective medicines use, in order to ensure that patients are getting the best possible outcomes from their medicines.

Shared decision making (SDM) is another approach that has been advocated by the UK government over the years [14] with the aim of encouraging patient involvement in care decisions during consultations between patients and HCPs to improve patients’ outcomes and quality of care [15], and promote medicine optimisation [14]. SDM is a fundamental component of patient-centred care [16]. The latter has been demonstrated to be beneficial in terms of improving patients’ outcomes, satisfaction, adherence to medications and disease burden [16‐22].

This study aimed: first, to investigate hospital patients’ receipt and involvement in medication counselling, patients’ HCP preference for receiving medication information at the transition of care, and awareness of community pharmacy services such as the MUR. Second, to explore perceptions and experiences of patients with LTCs about the quality of care received in primary care and their awareness of the MUR service provided in the community pharmacy sector, focusing on COPD patients as an example.

This is a mixed method research study involving quantitative cross-sectional surveys and qualitative semi-structured interviews with patients across South West London.

The current study sheds light on several issues related to patients’ perceptions regarding counselling about medications and SDM and their awareness of community pharmacy services that could enhance understanding of their medications and conditions. The generated results clearly identified that there is a lack of detailed medication counselling and patients’ involvement in SDM, which echo previous findings in the literature [5, 25]. Underutilisation of community pharmacy services was also highlighted in this study by the lack of awareness among target patients about services related to medication optimisation and counselling which can be promptly and easily accessible at primary care level. A new finding revealed in this study was patients’ preference for receiving their discharge medications from community pharmacies. This could provide a solution for the delay in discharge related to the long wait for discharge medications highlighted in the literature [25].

This study highlighted problematic issues related to counselling in both primary care and during transition of care. Despite the fact that all patients have received medication counselling upon discharge, yet all consultations only covered basic topics mainly the purpose of the medication and how to take it, whereas other important topics related to side effects and life style changes were only covered in less than 40% of these consultations. More than 30% of patients who participated in the second survey thought that medication counselling could be improved prior to hospital discharge. Interestingly, in previous research, patient counselling was perceived by HCPs to be limited at hospital discharge in England [5]. Counselling was also perceived by the interviewees to be basic, brief and minimal. Patients expressed their need for more detailed counselling during the interviews. Not surprisingly, this study found that a quarter of the surveyed patients would refer to the PIL if encountered problems with a medication post-discharge. This was echoed by the interview results where interviewees reported the use of the PIL to seek additional medication information, which can be related to the minimal counselling reported by these patients. In previous research, the main reason cited by patients for not reading PILs was the provision of previous effective counselling by HCPs [26].

The need for better education about COPD as a disease among patients has been previously raised in the literature [8, 27, 28] to improve patients’ quality of life [8]. Despite that patient education has been acknowledged as pivotal to the care of COPD patients and a cornerstone to the management of the disease [8, 27, 29], yet the current study still highlights basic knowledge about the disease. This indicates that nothing has changed with respect to patient education, despite the latter being reported as poor among COPD patients in the literature for more than 10 years [30].

The results of the first survey showed that although 70% of patients had changes made to their medications, only a third was consulted about the changes. The same was echoed in our interviews, which denotes a paternalistic model of care rather than SDM. In addition, the interviewees highlighted lack of personalised care by HCPs. This finding is of concern, given the increased advocacy in the National Health Service (NHS) in England towards the implementation of patient-centred care which involves SDM [31]. Previous studies in England highlighted lack of patient involvement throughout the discharge process [5, 25] and primary care consultations [32]. For over 25 years, NHS directives have recommended increasing patients’ involvement in their care decisions [33]. This was encouraged from the 1990’s [33‐35] and in 2012 the phrase “No decision about me, without me” [36] was devised to advertise the NHS commitment to SDM, so that this becomes the norm practice across the NHS [25, 36]. Yet, the current results show that SDM is still not widely implemented during consultations with patients.

Additionally, more than two-thirds of patients at the two hospitals wanted to be involved in decisions about their medications. Patients who did not want to be involved in their treatment expressed trust in the doctors’ decision; this confidence in doctors was shown again by patients’ HCP preference for receiving medical information. However, this was different in our interviews, as most of the interviewees were not willing to be involved in decisions about their care. What was clear from the interviews is that some patients did not want to be involved in their care, whereas others did not perceive such involvement to be important. However, patients’ preferences for participation in decision making can vary substantially, hence patients can either adopt a passive role or an active/collaborative role in making decisions about their health [37, 38]. Research conducted in the USA, showed that although patients described participation in decision making, yet many deferred the final decision to their doctors [39]. Another study in England showed that one third of the patients preferred the doctors to make decisions for them [40]. However, provision of patient-centred care involving SDM necessitates different HCP skills, maintaining patient trust, and the provision of detailed counselling including evidence-based information about options, outcomes and uncertainties, together with decision-support counselling [41, 42]. Hence, the provision of brief and minimal counselling reported in this study provides a potential explanation to the reported lack of personalised care and SDM experienced by the interviewees. Another possible explanation would be age; most of the interviewees in the current study were over 65; which was reported in the literature to affect patients’ preferences for SDM [15, 43], with older patients preferring to be less active in medical decision making during consultations in primary care [15]. Despite age being also cited as a reason for patients being passive in decisions about care during the hospital discharge process [44], yet most patients at the two hospitals, despite being elderly, wanted to be involved in decisions. Interestingly, this highlights a difference for SDM preference which can be related to the healthcare setting in this study. In the hospital setting and specifically during hospital discharge which is a complex and lengthy process [25], SDM was more preferred than in the respiratory HoT clinic setting which was developed in Croydon to provide a smooth and rapid service in the community to high-risk patients. In fact, patient involvement is a complex and multifactorial issue which can be affected by patient, doctor and contextual factors such as clinical settings [45]. This in return re-emphasises the need for HCPs to adopt interventions to promote patient participation including elderly through creating a trusting environment during the consultation that allow patients to feel comfortable speaking up and asking questions about their care [15], given the increased prevalence of elderly people with LTCs [14]. In one study, the doctor’s communicative style was found to be one of the strongest predictors of patient involvement in care [45].

Despite the MUR service being introduced in England in 2005, the current findings still highlight a considerable lack of awareness of the service among participants in both phases of the study. This finding is of also of concern due to several reasons. First, the MUR service has been introduced for more than 10 years in the community pharmacy sector in England. Second, community pharmacies in England are expected to perform at least 70% of MURs with patients falling within the agreed national target groups since April 2015 [46]. Post-discharge and respiratory patients having COPD are among the national target groups for this service [46]. Research evidence from several countries demonstrated low awareness of medicine related cognitive services offered by community pharmacists among the public [11]. A survey study in 2012 among the public and community pharmacists in England reported low awareness of the MUR service among the public, even in regular medicines users [11]. The latter study also highlighted how community pharmacists overestimated patients’ awareness of the MUR service, in contrast to the actual awareness reported in the study which was indeed low [11]. The current results also show a remarkable low level of awareness among patients who are the target groups for this service. This indicates that nothing has changed to promote patients’ awareness about services that are easily accessible and essential to patients with LTCs such as the MUR service in the community pharmacies in England. This also places a great emphasis on the importance and need among all HCPs, whether in primary or secondary care to promote awareness especially among target patients about the MUR service in England. It also aligns with the call raised by the Royal Pharmaceutical Society in the UK for greater public awareness of pharmacy services [47]. In the current study, patients at both hospitals wanted to participate in MUR and NMS services once informed about them. However, a study in England highlighted that few hospitals refer patients after discharge to community pharmacies for MUR or NMS as currently recommended [5], the research also highlighted the lack of communications between HCPs in secondary care with HCPs in primary care especially community pharmacists. In addition, existing evidence suggests that patients still consider GPs as their main source of information about their medications after discharge, which might be due lack of awareness about the MUR and NMS services at the community [25], hence patients can be more willing to participate in these services if they are signposted by their GPs [13]. Patients at the two hospitals also wanted to receive their discharge medications from community pharmacists, possibly due to the long waiting times in hospitals. In a previous research in the UK, waiting for medicines was the most commonly perceived reason for delays in hospital discharges [25]. A transfer of the provision of discharge as well as of out-patient medications from hospital to local community pharmacies, as proposed in the Carter report [48] would enable patients to receive their medications and additionally NMS and MUR at a more convenient location and time. This also coincides with the calls to provide a new model of care for patient discharge which involves support with medicines after discharge by community pharmacists [25].

The current study has several limitations including the small sample size and the use of purposive sampling within an urban community in London borough of Croydon for the qualitative phase. Interviews were sought among patients with one LTC which is COPD; hence the results may not be reflective of the views of patients with other LTCs. Patients with COPD were chosen for this phase for three main reasons. First, the convenience of recruitment to the researchers within the respiratory HoT clinic at Croydon University Hospital. Second, COPD patients are a target group for MUR and NMS services offered in community pharmacies. Third, the high economic burden associated with COPD treatment with respect to exacerbations and hospital admissions.

In addition, as patients were in acute setting, the data collection tool for the quantitative phase had to be concise, hence the topics evaluated had to be split into two surveys. Even though minor amendments were required with the surveys, yet the pilot surveys were not included in the final analysis to avoid any type of bias. The sample size required for survey 2 was not achieved despite approaching 350 patients; this could be due to the fact that the survey was done among patients ready to be discharged from the hospital so this may have impacted their willingness to complete the survey in order to avoid delays in leaving the hospital. Another limitation is that population age in the two surveys was different; as older patients were more prevalent in the first survey, whereas younger patients were over presented in the second survey.

A significant number of patients are still not involved in discussions about changes to their medication/treatment despite many NHS recommendations to move from a paternalistic approach to a shared decision model. Despite the huge cost associated with the poor management of COPD and patients post-discharge, and the fact that SDM could support patients’ management in relation to medicine optimisation, exacerbations and hospital admissions/re-admissions, the principle is not widely implemented. There was also a remarkable low level of awareness of the MUR service among post-discharge and respiratory patients who are target groups for this service. The current results emphasise the need among HCPs in primary and secondary care to promote awareness among patients about services targeting medicine optimisation, regardless when these services were introduced, in order to enhance care experienced by patients with LTCs. It also reinforces the need among HCPs in primary and secondary care to promote patient-centred approach during consultations to enhance SDM. This study is limited to two hospital settings in Greater London, a similar study on a national scale is recommended to further investigate patients’ preference for receiving discharge medications from community pharmacies among larger population and investigate the feasibility of such a new model of post-discharge service provision to enhance the quality of care in the future. Nevertheless, using community pharmacy services for medication supply and counselling post discharge could provide a solution to the pressure experienced by acute NHS hospitals [49] and hence increase their operational productivity and performance in the future, and comes in line with the government’s health policy “Better care Fund” to rely more on community-based services in the future [49, 50].