TY - JOUR

T1 - What really matters?

T2 - A mixed methods study of treatment preferences and priorities among people with epilepsy in the UK

AU - Ring, Adele

AU - Jacoby, Ann

AU - Baker, Gus

AU - Holmes, Emily

AU - Hughes, Dyfrig

AU - Kierans, Ciara

AU - Marson, Anthony

PY - 2019/6

Y1 - 2019/6

N2 - The widening range of treatment options for epilepsy, and their potential outcomes, mean decisions about treatment for people with epilepsy are often complex. While antiepileptic drugs (AEDs) represent the mainstay of treatment, other potential non-drug interventions are gaining in importance. These treatments all have the potential for harming those using them, as well as bringing benefits.This study examined the views and experiences of people with epilepsy (PWE) about a range of treatment options. We used both qualitative and quantitative approaches – a series of depth-narrative interviews, followed by a large-scale survey. Treatment options and healthcare priorities deemed important by at least 10% of interview participants were then addressed as a series of statements in the follow-on survey questionnaire. Quantitative responses supported health care priorities identified through the qualitative interviews.The key goal of treatment among study participants was to be able to live ‘a normal life’. Important physical, psychological and life benefits of treatment were identified – most being the direct consequence of improved seizure control. One psychological benefit, reduced worry, was also identified as an important treatment goal.All participants viewed AEDs as appropriate first-line treatment; and since adverse effects of AEDs had implications for individual levels of daily function and wellbeing, their appropriate management was considered important. In contrast, surgery was almost always regarded as the treatment of last resort. Despite lack of research evidence supporting their use, participants were interested in complementary therapies as adjunctive treatment and a means of coping with having epilepsy, with yoga and meditation of particular interest. An important finding was the desire for targeted services to help with memory problems, as was the call to increase availability of psychological/counselling services. Our findings emphasise the importance of providing treatment responsive to the life context of individual patients. They highlight not only the level of demand for specific treatment options, but also the need for high-quality evidence to support future investment in their provision.

AB - The widening range of treatment options for epilepsy, and their potential outcomes, mean decisions about treatment for people with epilepsy are often complex. While antiepileptic drugs (AEDs) represent the mainstay of treatment, other potential non-drug interventions are gaining in importance. These treatments all have the potential for harming those using them, as well as bringing benefits.This study examined the views and experiences of people with epilepsy (PWE) about a range of treatment options. We used both qualitative and quantitative approaches – a series of depth-narrative interviews, followed by a large-scale survey. Treatment options and healthcare priorities deemed important by at least 10% of interview participants were then addressed as a series of statements in the follow-on survey questionnaire. Quantitative responses supported health care priorities identified through the qualitative interviews.The key goal of treatment among study participants was to be able to live ‘a normal life’. Important physical, psychological and life benefits of treatment were identified – most being the direct consequence of improved seizure control. One psychological benefit, reduced worry, was also identified as an important treatment goal.All participants viewed AEDs as appropriate first-line treatment; and since adverse effects of AEDs had implications for individual levels of daily function and wellbeing, their appropriate management was considered important. In contrast, surgery was almost always regarded as the treatment of last resort. Despite lack of research evidence supporting their use, participants were interested in complementary therapies as adjunctive treatment and a means of coping with having epilepsy, with yoga and meditation of particular interest. An important finding was the desire for targeted services to help with memory problems, as was the call to increase availability of psychological/counselling services. Our findings emphasise the importance of providing treatment responsive to the life context of individual patients. They highlight not only the level of demand for specific treatment options, but also the need for high-quality evidence to support future investment in their provision.

KW - Patient preferences

KW - Life context

KW - Treatment benefits and costs

KW - Antiepileptic drugs

KW - Surgery

M3 - Article

VL - 95

SP - 181

EP - 191

JO - Epilepsy and Behavior

JF - Epilepsy and Behavior

SN - 1525-5050

ER -