The impact of counselling with a practical statistical model on patients' decision-making about treatment for epilepsy: Findings from a pilot study

doi:10.1016/0920-1211(93)90081-H

Epilepsy Research

Volume 16, Issue 3, December 1993, Pages 207-214

https://doi.org/10.1016/0920-1211(93)90081-H Get rights and content

Abstract

To ascertain the impact of a computer-based predictive model on patients' decisions about continuing treatment of their epilepsy, 72 subjects were asked to complete questionnaires prior to and following counselling with the model. The subjects were attending the neurology out-patient clinic in a large UK hospital, and were identified from medical records as eligible for withdrawal of AEDs. The effect of counselling with the model was to make the majority of patients opt to continue AED therapy. Positive or negative framing of risk information appeared to influence the decisions of patients who were initially uncertain about continuing treatment, as did patients' perceptions of the clinician's views. The prognostic model appeared to allow relatively complex statistical information to be conveyed to patients in an accessible form. We suggest its use will aid clinicians in counselling patients and will help patients reach better-informed decisions about treatment.

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Should antiseizure medications be withdrawn after an extended period of seizure freedom in individuals with adult-onset epilepsy?
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Unlike several epilepsies with onset in pediatric age, adult-onset epilepsies do not typically have a time course that is predictably self-remitting in the large majority of people. Still, about one-half of individuals with adult-onset epilepsy who have been seizure-free for an extended period (two years or longer) on antiseizure medications (ASMs) will remain in remission when their drug therapy is discontinued. Although a number of predictors of outcome have been identified (including specific adult-onset syndromes associated with a low probability of spontaneous remission), in most cases, the only way to establish whether the epilepsy has remitted in a given individual is to gradually withdraw ASMs. ASM withdrawal can be beneficial, particularly when the currently used treatment is not well tolerated, or could lead to adverse outcomes in the future (i.e., teratogenic effects should pregnancy occur in a female of childbearing potential). However, the risks associated with ASM withdrawal are significant. Relapse of seizures can have major adverse psychosocial consequences and also may carry a risk of morbidity and mortality. Most importantly, evidence suggests that in about 20% of individuals whose seizure relapsed following ASM withdrawal, re-institution of pharmacological therapy may not readily restore seizure control. Ultimately, management decisions should prioritize the preference of the well-informed person with epilepsy. Particularly, when adverse drug effects are a concern, options to be discussed should include not only withdrawal or continuation of the current treatment but also dose reduction or substitution with a different ASM.
How often do doctors discuss drug withdrawal with their seizure-free patients with epilepsy?
2020, Epilepsy and Behavior
Citation Excerpt :
We are not aware of any studies that address the extent to which ASD withdrawal is discussed with patients. However, the impact of counseling about the risk of seizure relapse was investigated in one study, and it was found that the patients were more reluctant to consider drug withdrawal after the counseling [12]. In our study, we found that the likelihood of patients having discussed ASD withdrawal with their doctor more than doubled if the patients felt they had been involved in treatment decisions; i.e., shared decision-making.
Among patients with epilepsy, almost 70% become seizure-free with the current antiseizure drugs (ASDs) within 20 years following seizure onset. Of those who have been seizure-free for many years, around 70% remain seizure-free after withdrawal of ASDs.
The purpose of this study was to determine the extent to which seizure-free patients with epilepsy in Norway discuss drug discontinuation with their physician.
An online questionnaire was used; among the respondents were 186 adult patients who had been seizure-free for at least five years and were still using ASDs. Of these, 60 patients (32%) reported that they had discussed the question of drug withdrawal with their treating physician. Those patients who reported being involved in treatment decisions were more likely to have discussed ASD withdrawal.
In conclusion, it is our opinion that discontinuation of drug treatment in patients with long-term seizure freedom is discussed far too seldom and that many patients may be living with an unnecessary drug burden.
Long-term outcomes of surgical treatment for epilepsy in adults with regard to seizures, antiepileptic drug treatment and employment
2017, Seizure
Citation Excerpt :
On the other hand, patients have many aspects to consider when deciding for or against AED discontinuation, not least the psychosocial consequences of a seizure recurrence with regard to occupational abilities or driving. The framing of risk information influences patients’ decisions [53] and in one study where medically treated seizure-free patients were counseled about individualized recurrence risks based on a computer-based predictive model, the majority decided to continue AEDs [54]. Framing of information may be one reason behind the varying proportions of adults seizure-free after epilepsy surgery in whom AEDs have been withdrawn in different studies.
There is Class I evidence for short-term efficacy of epilepsy surgery from two randomized controlled studies of temporal lobe resection. Long-term outcome studies are observational. The aim of this narrative review was to summarise long-term outcomes taking the study methodology into account.
A PubMed search was conducted identifying articles on long-term outcomes of epilepsy surgery in adults with regard to seizures, antiepileptic drug treatment and employment. Definitions of seizure freedom were examined in order to identify the proportions of patients with sustained seizure freedom. The quality of the long-term studies was assessed.
In a number of high-quality studies 40–50% of patients had been continuously free from seizures with impairment of consciousness 10 years after resective surgery, with a higher proportion seizure-free at each annual follow-up. The proportion of seizure-free adults in whom AEDs have been withdrawn varied widely across studies, from 19–63% after around 5 years of seizure freedom. Few long-term vocational outcome studies were identified and results were inconsistent. Some investigators found no postoperative changes, others found decreased employment for patients with continuing seizures, but no change or increased employment for seizure-free patients. Having employment at baseline and postoperative seizure freedom were the strongest predictors of employment after surgery.
Long-term studies of outcomes after epilepsy surgery are by necessity observational. There is a need for more prospective longitudinal studies of both seizure and non-seizure outcomes, considering individual patient trajectories in order to obtain valid outcome data needed for counselling patients about epilepsy surgery.
The impact of a citywide audit with educational intervention on the care of patients with epilepsy
2008, Seizure
Citation Excerpt :
Ignorant of the risks of abrupt withdrawal20 and the driving regulations21 patients will often experiment without discussion, and stop medication of their own accord.22 For patients who drive the evidence indicates that they feel compelled to stay on treatment indefinitely23 and, therefore, this discussion can take place in the GP surgery, n = 16 in this study. Monitoring compliance is an important role for the GP, exploring the patient's perspective and can be crucial to the management of non-compliance, they often see taking medication as stigmatising.24
The care of patients with epilepsy historically has been well documented to be poor. Previous attempts to improve care through education have been unsuccessful. The New GP Contract in the UK introduced epilepsy as a core quality indicator from April 2004. This prospective audit assesses the impact of an audit with educational intervention on the process of care of patients with epilepsy. The case notes of 610 patients, of all ages, with epilepsy on treatment, in 13 general practices serving Chester and surrounding area were reviewed before and 2 years after an intervention, comprising (a) the provision of a comprehensive template, (b) individualised categorisation for each patient and (c) an educational session led by a Neurologist.
The overall review rate increased in the first year from 41to 49% (p < 0.0001) and by 2 years to 63% (p < 0.0001). Documented remission rate increased from 29 to 43% (p < 0.0001). Admissions to accident and emergency fell significantly (p = 0.0026). There was no fall in the non-compliance rate. Forty five percent of patients with documented poor control were not under shared care. Issues highlighted in the audit generated 77 referrals. There were clear health gains in 62 (13%) individuals from referrals and practice interventions related to the audit.
This original audit identified significant improvements in review rate, documented remission rate and beneficial outcomes in individual patients. The changes were attributable to both the educational intervention and the coincidental acceptance of the New GP Contract. Remaining problems include lack of shared care for patients with active epilepsy.
Epilepsy in the UK: Misdiagnosis, mistreatment, and undertreatment?
2005, Seizure
To assess the diagnostic and therapeutic difficulties in patients with epilepsy who had never come into contact with specialist services.
Assessment was offered to 676 patients diagnosed as having epilepsy and receiving anti-epileptic drug therapy (AED), who had no previous contact with the local epilepsy services. Two hundred and seventy-five patients gave consent and attended for reassessment. We identified the proportion of patients (a) who had previously seen a neurologist, (b) in whom the diagnosis of epilepsy was not secure, (c) in whom planned AED withdrawal could be considered (d) in whom seizure control could be improved.
53/275 (19.3%) of those attending for review had previously been seen by a neurologist. 87/275 (31.6%) patients ultimately received continued specialist care.
Diagnostic doubt was expressed in 3/53 (5.6%) and 42/222 (18.9%) of patients diagnosed by neurologist and non-specialist, respectively.
Of 133/219 (60.7%) of patients whose epilepsy was in remission, only 6 elected to withdraw or change medication. Of 18 patients with diagnostic doubt who accepted follow-up, 12 successfully stopped treatment.
17/55 (30.9%) patients with active epilepsy (10 partial, 7 generalised) achieved at least a 1 year remission consequent upon treatment in this clinic. In 15 cases this was a first ever remission.
Approximately 55% of the population of adults receiving treatment for epilepsy have never received specialist advice. Reassessment of these patients uncovers diagnostic uncertainty, failure to classify (leading to sub-optimal therapy) and lack of information and advice about all aspects of epilepsy care.
The development of integrated services for people with epilepsy (PWE) must take account of this hidden need. The new General Medical Services contract for general practitioners will bring this need to our attention, and our experience will help predict the measures required to deal with the under-treatent and mistreatment of this group. The majority of PWE, not currently receiving shared care, merit reassessment and approximately one-third will require continued specialist care. Existing services do not have the capacity to process a marked increase in rate of referral. This project informs prioritisation of referrals and service reorganisation.
Antiseizure medication withdrawal risk estimation and recommendations: A survey of American Academy of Neurology and EpiCARE members
2023, Epilepsia Open

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Research reportThe impact of counselling with a practical statistical model on patients' decision-making about treatment for epilepsy: Findings from a pilot study

Abstract

Lancet

Soc. Sci. Med.

J. Clin. Epidemiol.

The birth of a first child: do women's reports change over time?

Birth

‘Doctors orders’: controlled trial of supplementary written information for patients

Br. Med. J.

Measuring patients' desire for autonomy: decision-making and information-seeking preferences among medical patients

J. Gen. Int. Med.

Science, ethics and the making of clinical decisions. Implications for risk factor intervention

J. Am. Med. Assoc.

Reporting clinical trials from the viewpoint of a patient's choice of treatment

Statist. Mad.

Psychosocial outcomes of antiepileptic drug discontinuation

Epilepsia

Prospect theory: an analysis of decision under risk

Econometrica

Choices, values and frames

Am. Psychol.

Research report
The impact of counselling with a practical statistical model on patients' decision-making about treatment for epilepsy: Findings from a pilot study