Introduction
The first UK patient helpline for medication enquiries in an NHS hospital pharmacy was set up in 1992 in response to demand for information on medicines.[1]
The concept was successful and prompted many pharmacy medicines information centres across the UK to provide patient helplines for patients discharged from hospital and outpatients requiring advice on medicines.
Several Government initiatives promote patient involvement in their own healthcare and guidance from the National Institute of Health and Care excellence advises healthcare professionals to encourage patients to ask about their conditions and treatments.[2]
The White Paper “equity and excellence: liberating the NHS” promotes shared decision-making between patients and physicians, citing evidence that improving patients’ knowledge about their medicines can improve their adherence to treatment regimens.[3],[4]
The estimated cost of unused medicines in the NHS in england is £300m annually[5]
and a third to half of medicines prescribed for long-term conditions are not taken as recommended.[6]
A Cochrane review on medication adherence concluded that improving medicines-taking may have a far greater impact on clinical outcomes than an improvement in treatments.[7]
The Care Quality Commission has standards for ensuring information is available for people about the medicines they are taking, including the risks.[8]
However, the national adult inpatient survey 2010 found that 78 per cent of patients thought they received the right amount of information about their treatment and 22 per cent did not think they received enough information.[3]
Only 37 per cent of patients believed they were given complete advice about side effects; 19 per cent received advice to some extent, leaving 44 per cent of patients who thought they did not receive enough information.[3]
Medicines optimisation is a new initiative about improving quality, outcomes and value for patients from their medicines. It encourages engagement with patients and promotes adherence with medication.[9]
Patient helplines provide a useful resource for patients to resolve their issues with medicines and may help achieve some of these targets. However, little is known about the exact number of patient helplines or the volume and type of enquiries they handle.
Our study had the following aims:
- To survey all UK medicines information centres to determine the number of patient helplines and volume of enquiries handled per year
- To review patient helpline enquiries at Guy’s and St Thomas’ NHS Foundation Trust (GSTT) to describe the demographics of service users and determine the types of enquiries handled
Methods
An online survey was designed and emailed to all medicines information managers in the UK. The questionnaire asked whether a patient helpline was provided; the number of enquiries per month; and how the service was advertised. Non-responders were telephoned by the investigator to ensure a full set of data.
A retrospective review of GSTT’s patient helpline was carried out. ethics committee approval was not necessary for this service evaluation. A census sample was used of patients and carers who called the helpline during a one-year period (1 January to 31 December 2009).
Enquiries were retrieved from the electronic enquiry-recording database, MiDatabank, and data collated on enquirers’ demographics, types of questions asked and how medicines information answered the questions.
Data were categorised by clinical origin and enquiry type according to UK Medicines Information classifications.[10]
Questions and answers were qualitatively examined for trends and additional categories were developed after common themes were identified. Data were analysed using Microsoft Excel 2007.
Following data analysis a second review of patient helpline enquiries (1 January 2011 to 31 December 2011) was carried out.
Enquiries were selected for further analysis if they concerned a lack of appropriate information on the discharge letter.
Results
Patient helplines are currently operating in 102 of 184 medicines information centres in the UK (55 per cent). Slightly more helplines are offered to discharged inpatients (n=85; 83 per cent) than outpatients (n=79; 77 per cent).
Collectively, patient helplines answer between 13,200 and 23,280 enquiries each year, with 19 services answering more than 30 enquiries per month, 11 answering 20 to 30, 31 answering 10 to 20, and 41 services answering fewer than 10 calls per month.
All centres, except one, advertise the helplines using various methods including: leaflets (54 per cent; n=55), business cards (53 per cent; n=54), patient counselling (32 per cent; n=33), posters (28 per cent; n=29), printed details on discharge letters and/or prescriptions (21 per cent; n=21), medicine labels or medicine bag labels (21 per cent; n=21), and websites (20 per cent; n=20).
The patient helpline at GSTT received 312 calls during the study period and 413 questions were posed; some enquirers asked multiple questions. Patients’ ages were ascertained for 251 cases (80 per cent) and gender for 288 (92 per cent).
Over-65-year-olds were the largest age group (n=115, 46 per cent) and males and females were evenly distributed (144/288, 50 per cent) (Table 1).
| Table 1: Helpline calls | ||
|---|---|---|
| Number | Percentage | |
| Total | 312 | 100 |
| Gender | ||
| Male | 144 | 44 |
| Female | 144 | 46 |
| Not known | 24 | 8 |
| Age, years | ||
<13 | 15 | 6 |
| 13-20 | 5 | 2 |
| 20-40 | 27 | 11 |
| 40-64 | 89 | 35 |
| ≥65 | 115 | 46 |
Clinical origins of enquiries are in Table 2.
| Table 2: Clinical origin of enquiry | ||
|---|---|---|
| Clinical origin | Number | Percentage |
| Cardiology | 64 | 20 |
| General medicine | 25 | 8 |
| Ear, nose and throat | 19 | 6 |
| Dermatology | 18 | 6 |
| Oncology | 17 | 5 |
| Orthopaedics | 17 | 5 |
| Paediatrics | 17 | 5 |
| Others | <15 per specialty |
Patients called the helpline in 70 per cent of cases (n=217); patients’ carers accounted for the remaining 30 per cent (n=95). The most common reason for enquirers to contact the helpline was a lack of appropriate information in the discharge letter (24 per cent, n=98) (Table 3).
| Table 3: Topic of enquiry | ||
|---|---|---|
| Topic of enquiry | Number | Percentage |
| Total | 413 | 100 |
| Insufficient information on the hospital discharge letter | 98 | 24 |
| Drug interactions with other drugs or medical conditions | 47 | 11 |
| Adverse drug reaction(s) with current medicine | 43 | 10 |
| Medicine supply | 35 | 8 |
| General information about side effects | 29 | 7 |
| Error | 26 | 6 |
| Advice about medicines changes | 25 | 6 |
| Pain management | 18 | 4 |
| Choice of therapy | 17 | 4 |
| Explain reasons for being given drug/what it does | 15 | 4 |
| Medicine ingredients | 12 | 3 |
| How to take the drug(s) with meals | 9 | 2 |
| Information on vaccines | 6 | 1 |
| Excessive dose/wrong dose | 4 | 1 |
| Missed dose | 4 | 1 |
| Drugs in breast milk | 3 | 1 |
| Other general information | 22 | 5 |
Most could not understand the instructions because of vague or ambiguous words (n=73; 74 per cent) including information about duration of medicines, follow-up instructions and medical term usage.
Some reported discrepancies between the information about medicines in the discharge letter and that provided by other healthcare professionals (Panel 1). A notably high proportion of patients reported changes to their medication that they did not recall being told about (n=23; 23 per cent).
Panel 1: Discharge discrepancies
Discrepancies between the information in the discharge letter and that provided by other healthcare professionals
- Discharge letter said that ramipril was for 14 days and then review. Who should review? The patient did not know if this was for the GP to review or whether they needed to come back to hospital.
- “Ranitidine 300mg bd for 1/12 and then once the clopidogrel has stopped, change the ranitidine over to a PPI.” The patient did not understand the medical jargon.
- Discharge letter says to complete the full 5/7 course. What does this mean?
- Discharge letter states that the ramipril should be taken in the morning, but the box states to take the ramipril at night.
- The clinical summary on the discharge letter says the patient was started on sodium valproate but there is no sodium valproate on the list of drugs prescribed.
- Discharge letter had prescribed two inhalers, but the nurse on the ward had apparently told the patient not to use the blue salbutamol inhaler.
- Patient was newly started on insulin. Discharge letter says insulin 20 units daily (am). However the written information about insulin says to use 24 units in the morning and 18 units in the evening.
Some enquirers (n=47; 11 per cent) requested information about drug interactions and a proportion reported and sought advice about adverse drug reactions (n=43; 10 per cent).
In 29 cases (67 per cent) ADRs were corroborated by medicines information pharmacists and most patients were advised to see their GP (n=21; 72 per cent) for examination of symptoms and changes to medication.
None of the ADRs met the Medicines and Healthcare products Regulatory Agency criteria for reporting suspected adverse reactions.
There were 26 reports of possible errors; most commonly patients were unable to find medicines that was listed on their discharge letter (n=10; 38 per cent) (Table 4).
| Table 4: Error | ||
|---|---|---|
| Error | Number | Percentage |
| Missing drug | 10 | 38 |
| Inappropriate label | 6 | 23 |
| Wrong drug | 5 | 19 |
| Wrong quantity | 5 | 19 |
The second review of the patient helpline two years later found that 427 enquiries posing 475 questions were received during the one-year period and 7 per cent (n=32) were related to lack of appropriate information on the discharge letter. This included eight who were confused about how to take their medicine, six about further supply of medicines, five who did not understand how long to take their medicines, five who were confused by brand and generic names, two who reported wrong information on the discharge letter, two who could not understand medical jargon, and two who needed to identify items on handwritten prescriptions. A further two involved contradictions between instructions given and the patient information leaflet.
This was a reduction from 98 (24 per cent) in 2009 to 32 (7 per cent) enquiries in 2011 where patients did not understand something on their discharge letter.
Discussion
More than half of UK medicines information centres now run patient helplines in response to increased demand for information by patients and to meet Government targets, with 102 currently in operation compared with 82 helplines in 2000.[1]
Data from a single medicines information centre’s patient helpline found that patients aged over 65 years were the largest user group (46 per cent). This is consistent with a previous UK study (48 per cent).[11]
Around 30 per cent of enquiries were made by carers and relatives calling on behalf of patients. As a large proportion of patients are elderly it is not surprising that family members are caring for relatives and need medicines information.
Guidance from the National Institute for Health and Clinical excellence suggests that patients’ carers like to be informed about helplines because the carers may not be present when patients are counselled about medicines.[2]
The most common reason for enquiries was lack of appropriate information in the hospital discharge letter (24 per cent) of which 23 per cent reported that the letter indicated medication changes during the patient’s hospital stay but without the patient receiving explanations.
Follow-up data were not available to confirm whether these were unintended changes, lack of communication with patients or paperwork mistakes. Vira et al reported that 60 per cent (n=36; 95 per cent confidence interval 48–72) of inpatients experienced at least one unintended medicine change at admission or discharge from hospital with 18 per cent (n=11) who had one clinically important unintended change.[12]
This underlines the need for patients to be able to question any changes to their medication.
Patients reported possible errors in 8 per cent of (n=26) cases. No data was available to verify these claims where they were referred to other healthcare professionals for resolution.
A previous study of 500 patient helpline calls found possible errors in 34 per cent (n=171) of cases, of which 49 per cent (n=84) concerned provision of insufficient or wrong information, 8 per cent (n=14) prescription inaccuracies, 5 per cent (n=8) dispensing inaccuracies, and 4 per cent (n=6) patients admitting self-error by not following instructions provided.[13]
This error data cannot be directly compared with the present study data because different categories of error were used and neither study retrieved further evidence to verify that errors actually occurred. Incident reports are completed for errors found during enquiry answering and followed up by the risk management department.
At GSTT, discharge letters are supplied to all patients and copies are sent to GPs.
Information is conveyed about the patient’s diagnosis, treatment and current prescribed medicines to enable GPs to follow up their patient’s condition.
This study showed that patients are keen to understand all details documented on discharge letters. Informed by the findings of the first part of this study, discharge letters were improved by reducing medical jargon and abbreviations and writing clear instructions that are comprehensible to both GPs and patients.
Full explanations of medicines’ instructions are given, for example, “four times a day when required” instead of “qds prn”, and there is a key to explain abbreviations, such as POD, the abbreviation for patient’s own drug.
In relation to drug status, “as previously” is used to mean no deliberate changes to the regimen, “changed” means the medicines regimen was changed during the hospital stay, and “new” means the medicine was started during the hospital stay.
A review of patient helpline enquiries two years later revealed that, although the volume of enquiries increased, calls about lack of appropriate information on discharge letters fell dramatically, demonstrating the success of our amendments.
About 5 per cent of UK hospital admissions are related to ADRs[14]
and in the present study 10 per cent of patients wanted advice about possible adverse drug reactions, often expressing a desire to stop the medication.
The patient helpline is a useful facility for patients with suspected ADRs because medicines information pharmacists assess patients’ medical histories, recent medication and symptoms in order to judge risks and benefits before offering expert advice. Referrals to GPs were necessary when patients needed further symptom assessment and prescription changes.
Helpline pharmacists are well placed to complete yellow card reports for suspected ADRs for submission to the Medicines and Healthcare products Regulatory Agency.
Patient helplines bridge the gap when patients need more information than was provided while in hospital. Improving medication counselling and providing written material to read at home may help meet some of these needs.
However, patients often feel vulnerable and anxious during their hospital visit, possibly reducing their ability to remember information imparted at this stressful time. Patients may read the information leaflets at home leading to questions they would like answered, particularly as a recent study revealed that 43 per cent of patients cannot understand health literature.[15]
Awareness of patient helplines will reassure patients that their questions will be answered whenever they require the information.
This was the first service evaluation of the GSTT patient helpline and it assessed how patients used the service. However it was limited to one year’s worth of enquiries and a second brief analysis following changes to discharge paperwork two years later.
Areas of weakness were identified and remedial action improved the service. It is essential to continually review patient helplines for further improvements to be made.
Little feedback exists from patients on helpline performance and whether patients’ needs are met.
Two thirds of patients calling a helpline at a London teaching hospital reported that their medication problem had been avoided following advice from medicines information.[11]
Further study involving follow-up data on enquiry outcomes would be useful to assess the quality of enquiry answers and to measure the impact of the advice on patient care.
Conclusion
Patient helplines provided by medicines information units are well used and answer thousands of patients’ questions about medicines each year. A review of enquiries revealed key areas for improvement and the ensuing remedial action reduced patients’ confusion about medicines.
Patient helplines contribute to medicines optimisation by ensuring patients have easy access to pharmacy experts to discuss concerns about their medicines and improve the quality of their pharmaceutical care.
About the authors
Diane Bramley, MSc, MRPharmS is senior pharmacist in medicines information and research lead for London and South East. David Erskine, MSc, MRPharmS, is director of London and South East regional medicines information service. Aamer Safdar, MSc, MRPharmS, is principal pharmacist lead for edu- cation and development at the pharmacy department at Guy’s and St Thomas’ Hospital. Szn-Fang Li, MSc was a student was at the School of Pharmacy, University of London, at the time of research and now works as a medicines information pharmacist at Shin Kong Hospital, Taiwan. All authors are members of King’s College London, King’s Health Partners, Pharmaceutical Science Clinical Academic Group, Institute of Pharmaceutical Science, Guy’s and St Thomas’ NHS Foundation Trust
Correspondence to: Ms Bramley (email Diane.Bramley@gstt.nhs.uk).
Declaration of interest
Diane Bramley is a senior pharmacist in medicines information at Guy’s and St Thomas’ hospital. David erskine is the director of the medicines information service for London and South east and works at Guy’s and St Thomas’ Hospital. No other financial, commercial, personal or occupational interests declared
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[14] Pirmohamed M, James S, Meakin S et al. Adverse drug reactions as cause of admission to hospital: prospective analysis of 18,820 patients. BMJ 2004;329:15–19.
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