In a recent study Lucyna Lach, MSW, Ph.D., Assistant Professor, McGill University School of Social Work, and colleagues investigated the long term social outcomes of brain surgery for epilepsy in children and adolescents with an emphasis on interpersonal (social relationships) and intrapersonal (affective and instrumental) aspects of social functioning. Lach et al. examined social functioning in a group of young adults (aged 18-30) and compared those who had epilepsy surgery and were seizure-free, to a group who weren’t seizure-free after surgery, and a third comparison group with intractable epilepsy who did not undergo surgery. The social functioning subscale of the QOLIE-31 (Cramer et al.,1998) and the work and activity, and social and personal subscales of the Subjective Handicap of Epilepsy (SHE); (O’Donoghue et al., 1998) were used to examine group differences in social functioning. Below is an interview with Lucy Lach regarding her findings from this study as presented at the 58th annual American Epilepsy Society (AES) conference in New Orleans.

Q. "How were the participants in your study recruited?"

A. "Participants between the ages of 18 and 29 who underwent epilepsy surgery in two Canadian pediatric epilepsy centers at least two years prior to recruitment were contacted by regular mail. 73 surgical patients in one site and 60 in another were initially identified through medical records. Of those, 72 responded, 52 from one site and 20 from the other. Control group participants were recruited from adult epilepsy centers."

Q. "Can you explain the types of questions asked on the Subjective Handicap of Epilepsy Questionnaire?"

A. "The Subjective Handicap of Epilepsy (O’Donoghue, Dunan & Sander, 1998) is a scale that contains 32 items and 6 subscales. Two of the subscales, ‘Work and Activities’ and ‘Social and Personal’, tap into what may be traditionally considered social well-being. Participants are invited to reflect on questions that pertain to the last 6 months of their life.

Work and Activities subscale (SHE)

"What is unique about the Work and Activities subscale is that it takes into consideration the vocational/educational status of the respondent. There are 3 trajectories that are considered: paid work, studying or taking a course, and other. The respondent is invited to comment on their ‘handicap’ in relation to whatever trajectory they identify with. In this way, the questions regarding Work and Activities do not place any judgment or value on whether one is employed or not. The degree of subjective ‘handicap’ is evaluated based on the individual’s perception of the role that epilepsy plays on their individualized pathway (employment1, education and training2, other3):

1. In the past 6 months, has epilepsy caused you problems doing your job1/doing your work2/doing your usual day-to-day activities3?

2. In the last 6 months have you had time off work1/off 2/off from your usual day-to-day activities3 because of epilepsy?

3. In the last 6 months have you worried about losing your job1/that you might have to stop your course2 because of epilepsy? If not working or taking a course, Do you need help looking after your home because of your epilepsy?

4. Does epilepsy prevent you from doing the type of job1, 3/type of course or training2 you would really like to do?

5. In the last 6 months, has epilepsy prevented you from doing leisure activities?

6. How much does epilepsy prevent your from doing the type of leisure activity you would like to do?

7. Does epilepsy cause you annoying problems in day-to-day life?

8. Does epilepsy cause you problems traveling and getting about?

"The Work and Activities subscale generates a score that is grounded in the trajectory that a respondent is on, placing little judgment or value on whether they are gainfully employed, engaged in a rehabilitative vocational program, or none of the above. Therefore, participants are invited to evaluate their life based on whatever trajectory they identify with.

The ‘Social and Personal’ subscale (SHE)

Each of these questions pertains to the participants’ perception of his/her relationships with other people:

1.  

   1. Does your epilepsy create problems in getting on with close relations (e.g., children, parents, etc.)?

   2. Does your epilepsy cause problems in your relationships with friends?

   3. Does your epilepsy cause problems making new friends?

   4. Does your epilepsy make your feel lonely?

"The SHE subscale taps into the way in which epilepsy has a perceived impact on interpersonal aspects of the respondent’s quality of life."

Q. "How does this questionnaire differ from the QOLIE in terms of what it is purported to measure?"

A. "One of the major differences between the QOLIE-31 and the SHE is the time frame. QOLIE-31 invites respondents to reflect on the last 4 weeks while the SHE asks about the last 6 months. Social functioning is treated broadly in the QOLIE-31 as it does not differentiate between the various aspects or components of the social domain, collapsing what is differentiated in the SHE into one score. Social functioning is a subscale that generates a score representing a ‘gestalt’ of social adjustment. Furthermore, the social subscale of the QOLIE-31 taps into a much broader sense of ‘social’ functioning, and does not differentiate between interpersonal aspects such as quality of friendships, leisure/recreational activities, employment/education, peer group status, etc."

Q. "When asking young adults about their social outcomes is their a difference in terms of how an 18-year-old versus a 30-year- old defines social outcomes?"

A. "This is a very good question. When an 18-year-old evaluates his/her ‘social’ life the factors that are drawn upon in that evaluation may be qualitatively different from those that a 30-year-old uses in the same process. We will be able to tell you more about that once we complete our analysis of the interviews that we have conducted with the participants. These interviews are open ended and are being subjected to qualitative analysis. What this means is that we will be able to induce and therefore categorize what younger adults have to say about their ‘social’ life and how this differs from what those who are older have to say. Please stay tuned..."

Q. "In your findings you say, 'This study generates evidence that those who undergo epilepsy surgery during childhood or adolescence and are seizure-free in young adulthood experience better social outcomes than an intractable cohort. However, these findings may be contingent on what aspect of social functioning is assessed.' Can you give examples of what other aspects of social functioning were not included in your study?"

A. "Social functioning is a very broad term. Therefore, any conclusions that are made about the impact of epilepsy on social functioning should differentiate what aspect of the ‘social’ domain we are referring to. Theoretical and empirical evidence suggests that we should differentiate it in the following manner:

• Social support – extent to which individuals experience their social network as supportive
• Friendships – extent to which dyadic relationships are reciprocated and intimate
• Peer status – extent to which an individual feels connected to and accepted by specific peer groups
• Leisure/recreation activities – involvement in these types of activities
• Employment/Education/Volunteerism "

Q. "What are the implications of your study?"

A. "The study of the ‘social’ domain of functioning is much broader than what is evaluated using these measures. It is important to differentiate between these various aspects of social functioning as they represent distinct aspects of a person’s life and should not be combined. The amalgamation of these various aspects dilutes the importance of these distinct dimensions blurring the impact that medical, surgical, psychosocial/preventive interventions make on this domain of quality of life."

The abstract if this study is published in Epilepsia, 2004;45;Suppl 7:p.184