Development and implementation of an adolescent epilepsy transition clinic.
(Care and treatment)
Transitional care (Methods)
Transitional care (Management)
Adolescent medicine (Research)
Nursing care (Methods)
Nursing care (Management)
|Publication:||Name: Journal of Neuroscience Nursing Publisher: American Association of Neuroscience Nurses Audience: Professional Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2010 American Association of Neuroscience Nurses ISSN: 0888-0395|
|Issue:||Date: August, 2010 Source Volume: 42 Source Issue: 4|
|Topic:||Event Code: 200 Management dynamics; 310 Science & research Computer Subject: Company business management|
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This article describes the collaborative development of a nurse-led transition clinic within the Comprehensive Epilepsy Program at the Stollery Children's Hospital and at the University of Alberta Hospital. Developed in 2005, our program has been instrumental in assisting 97 teens and their parents' transition from pediatric to adult epilepsy care. Through our Adolescent Epilepsy Transition Clinic, we address concerns expressed by teens and their parents when shifting from pediatric to adult healthcare services, including fear of the unknown, change in appointment location, loss of established relationships, and anticipated decrease in the quality of care posttransition. We also address concerns of adult and pediatric healthcare providers related to the adolescents' working knowledge of how their particular type of epilepsy and its management interact with typical adolescent developmental challenges and future career and lifestyle choices. The results from a process evaluation are presented and offer new insights for improving adolescent transition.
For more than a decade, child health advocates have recognized that adolescents with chronic health conditions require a well-planned and coordinated transition between pediatric and adult services (Alberta Child and Youth Initiative, 2007; American Academy of Pediatrics, 2002; Betz, 1998, 2004; Blum, 1995; Blum et al., 1993; Canadian Paediatric Society, 2007; McDonagh, 2007). However, most of the information regarding transition is in the form of policy recommendations or is anecdotal, with scant literature describing detailed transition services for adolescents with special healthcare needs (Betz & Redcay, 2003). Evaluation studies of transition clinics are also lacking. When considering adolescents with epilepsy, the literature is limited to one telephone survey of seven adolescents after their transfer to adult services (Warnell, 1998).
Adolescence is a period of rapid change related to physical and emotional development, educational choices, career choices, and evolving family and peer relations (Rettig & Athreya, 1991). Adolescents with chronic health conditions share the same normative health issues and concerns as their peers, including sexuality, mood changes, mental health, substance use, and choices between health-promoting or health-damaging behaviors (Rosen, 1994). When chronic illness is superimposed on typical adolescence, the difficulty of navigating transitions to adult life is exaggerated, including the transition to specialized adult healthcare services (Rettig & Athreya, 1991; Rosen, 1994; Warnell, 1998).
Promoting independence among chronically ill adolescents plays a key role in ensuring successful transitions (Betz, 2003; Fleming, Carter, & Gillibrand, 2002). Effective transition helps to prevent dependency, developmental difficulties, and psychosocial delays by enhancing autonomy, by increasing sense of personal responsibility, and by facilitating self-reliance (Rosen, 1994). Adult-centered care requires adolescents to take more responsibility for decisions associated with their epilepsy management (Westwood, Henley, & Wilcox, 1999). Adolescents are not able to make decisions regarding their care if they have not attained sufficient autonomy by the time their care is transferred to adult care settings (Westwood et al., 1999). Adolescents and young adults with chronic health conditions often achieve independence later than their same-age peers in part because of parental concerns about their child's capacity for self-management and the parents' inability to relinquish control of their adolescent's care (Westwood et al., 1999).
It is recommended that before their transition to an adult healthcare setting, adolescents should be exhibiting self-mastery behaviors concerning their chronic illness on the basis of an in depth knowledge of their disease. At a minimum, transitioning adolescents should manage their treatments, medications, and healthcare appointments independently (Betz, 1998). Similarly, adolescents need to understand developmentally related issues such as birth control, substance use, and driving as they pertain to their particular health condition. The few small studies examining transition for adolescents with chronic diseases highlight the need for ongoing, developmentally appropriate education specific to the youth's medical condition (Callahan, Winitzer, & Keenan, 2001; Fleming et al., 2002). Adolescents in these studies indicate that they need information about their condition, new developments in the field, recognizing when they need to seek medical treatment, accessing health professionals in a timely manner, navigating the healthcare system, and taking responsibility for their care (Callahan et al., 2001; Fleming et al., 2002; Hauser & Dorn, 1999; Viner, 1999).
In my clinical experience with adolescents with epilepsy, I frequently observe that they experience considerable anxiety and fear associated with transferring from a pediatric to an adult epilepsy program. Many parents and youth are upset by the loss of long-established relationships with professionals. In published reports, youth and their parents dread "starting all over again" with new services and professionals. They fear that care in the adult program will be inferior in quality and that healthcare providers in the adult setting will be less accessible and supportive (Callahan et al., 2001; Conway, 1998; Hauser & Dorn, 1999; Warnell, 1998).
Consistent suggestions for facilitating successful transition include visiting the adult clinic and meeting healthcare staff before their first appointment, meeting youth with the same condition that have transitioned successfully, and more effective communication and coordination between pediatric and adult health services (Fleming et al., 2002; Hauser & Dorn, 1999; Patterson & Lanier, 1999; Soanes & Timmons, 2004).
The optimal time for transition from pediatric to adult care settings is not clearly specified. The timing varies but is usually based on age and organizational policy. The research evidence regarding timing is inconclusive and conflicting. Although most participants indicate that age was the criterion for transfer, adolescents and their caregivers suggest that transition should not be based on age alone (Anderson, Flume, Hardy, & Gray, 2002; Flume, Anderson, Hardy, & Gray, 2001; Wojciechowski, Hurtig, & Dom, 2002). Ideally, decisions regarding the timing of transition should be individualized, taking into consideration the adolescent's disease stability, developmental and emotional maturity, and educational and social situation (Fleming et al., 2002; Hauser & Dora, 1999; Reiss, Gibson, & Walker, 2005; Soanes & Timmons, 2004; Tuffrey & Pearce, 2003; Viner, 1999).
Adolescent Epilepsy Transition Clinic The Transition Process
The plan for transition includes evaluation and education for epilepsy type and management as well as review of critical areas of adolescent developmental tasks. To ease transition fears, the epilepsy transition clinic is held in the adult clinic setting. Consistent nurses from the pediatric and the adult epilepsy programs conduct the clinic together and meet with each adolescent and their caregiver for approximately 60 minutes. Meeting with both nurses creates continuity because the adolescent is introduced to a member of the adult epilepsy team. Every effort is made to direct most conversation and discussion to the adolescent rather than to the caregiver. During the transition process, the pediatric epilepsy team continues to be responsible for the adolescents' care. The initial visit with the adult epileptologist occurs 2 to 3 months after the transition clinic visit and is attended by the nurse they have already met in the adult epilepsy program who is familiar with them and their epilepsy history.
Mandatory transfer of care occurs at the age of 17 years, when teens can no longer be admitted to the hospital or seen by pediatric services if they present to the pediatric emergency. The goal is for adolescents to participate in the transition clinic before turning 17 years old. In the first 33 months of operation, we saw 97 adolescents (52 women and 45 men), ranging from 16 to 18 years of age. Ninety of the 97 adolescents were accompanied by a primary caregiver who was a biological parent, foster parent, or group home worker. Twenty-two of the 97 adolescents had significant cognitive impairments that would likely render them dependent for an indefinite period.
Assessing Learning Needs
Using our model of working knowledge for epilepsy management, literature on transition and self-care (Betz, 1998; Betz & Redcay, 2003; Blum, 1995; Rosen, 1994), and our clinical experience, we developed a list of teaching and learning topics and a self-assessment questionnaire (see Appendices A, B, and C). Questionnaires were reviewed by the adult and pediatric neurologists before use. The topics are relevant for all adolescents but set within the context of living with epilepsy. The self-assessment forms are completed by both the adolescent and his or her caregiver while in the transition clinic waiting room and again at the end of the appointment. The adolescent and caregiver independently complete the questionnaire, rating the importance of each topic on a 5-point visual analog scale. The adolescents' priority topics determine the starting point for the clinic discussion. Although we ensure that each topic on the list is addressed, we do so in an informal adolescent-friendly style and aim for a highly individualized interactive discussion.
Results of Questionnaires
Adolescents and caregivers rated their need for information about their type of epilepsy, seizure first aid, driving, and seizure triggers as their top priorities. Adolescent girls were more concerned about birth control, pregnancy, education, and employment than their male peers. Adolescents of both genders and their caregivers consistently rated bone health as the lowest learning need before appointment but rated it as one of the most beneficial topics at the end of the visit. Caregivers and adolescents rated topics differently. Some caregivers rated driving or birth control and pregnancy very high at the beginning of the appointment but rated these as least beneficial at the end of the appointment. Some parents did not appreciate a harm reduction approach to topics such as driving and birth control, and we suspect that this explains our findings. Our observations reflect the profound challenges some parents face when relinquishing control of an adolescent with a chronic health condition.
Our intake questionnaire also assesses the adolescents' level of independence in five tasks associated with epilepsy management (Table 1). Most adolescents depend on their caregivers for some aspects of their epilepsy management. A few adolescents independently manage all aspects of their epilepsy and were able to answer yes to all five questions; most were independent in only one or two areas. Some adolescents remain more dependent because of intractable seizures and inability to drive especially if living in a rural community. Overall, adolescents did require information on strategies to independently complete all five tasks.
Developing a Working Knowledge
In 2005, the Adolescent Epilepsy Transition Clinic was implemented at the Stollery Children's Hospital and at the University of Alberta Hospital. The primary goal is to develop a "working knowledge" of developmental, clinical, and life skills that would prepare adolescents with epilepsy for their upcoming transfer to adult epilepsy services. In our conceptualization, a working knowledge of life with epilepsy requires the integration of three spheres of knowledge as depicted in Figure 1. First, adolescents need an accurate and sufficiently detailed knowledge of their type of epilepsy, medication and side effects, and seizure triggers so that they can make informed choices about their daily management. Second, an understanding of typical adolescent development, both physiologically and socially, is necessary because that is the life context within which all decisions are made. Third, adolescents need to develop a knowledge base that will support future independent living.
Epilepsy Type and Management
Epilepsy education is tailored to each adolescent's particular diagnosis. Discussion regarding medication, dosage, and side effects addresses specific knowledge gaps. Seizure first aid is discussed in the context of the adolescent's epilepsy type, and general seizure first aid is reinforced. Common seizure triggers such as missed medication, sleep deprivation, illness, and stress are discussed. Seizure precautions for the independent adult with seizures are discussed, such as showering versus bathing, using rear burners on the stove, and medic alert options. On the basis of longitudinal evidence regarding long-term side effects of antiepileptic drugs (AEDs), one being a decrease in bone density (Petty, O'Brien, & Wark, 2007; Pack, 2008), information is provided on dietary sources of calcium and vitamin D and how to incorporate weight-bearing exercise into their exercise regime. If dietary intake appears to be inadequate, supplements of calcium and vitamin D are recommended (Petty et al., 2007; Pack, 2008). Written information is provided.
[FIGURE 1 OMITTED]
Developmental Tasks of Adolescence
A large portion of clinic time is spent discussing what we refer to as our "sex, drugs, and rock 'n roll" talk. Again the topics are applicable to all adolescents but are presented in the context of epilepsy. The approach is casual and aimed to provide adolescents with information to make good choices regarding birth control, sexuality, alcohol, and drug use.
All female adolescents are of childbearing age, and consistent information on planned pregnancy and birth control is provided to each woman. The interactions between certain AEDs and hormonal methods of birth control are explained (Morrow & Craig, 2003). The increased risk of birth defects associated with the use of AEDs is discussed (Yerby, 2008) and explained, in that the risk varies depending on the medication, but there is an increased risk of birth defects that range in severity, with the most severe being neural tube defects (Torbjom & Battino, 2008; Vajada et al., 2004). Folic acid supplementation is encouraged (Morrow & Craig, 2003; Wilson et al., 2007) for all young women.
Alcohol and Drugs
Experimentation with alcohol and illicit drugs is common during the teen years. Most adolescents experiment with adult behaviors with minimal consequences. Adolescents with epilepsy may not be as fortunate. The seizure-provoking effects of alcohol and drugs are discussed. Practical strategies for risk avoidance and harm reduction are offered. For example, whereas we counsel adolescents to avoid alcohol, for the adolescents who disclose intent to consume alcohol, we suggest strategies such as filling a beer bottle with water so that they will feel like they fit in with their peers. Because many adolescents incorrectly believe that alcohol and medications cannot be taken together, the need to continue taking medication regularly especially if planning to consume alcoholic beverages is reinforced. The combination of alcohol consumption, sleep deprivation (as alcohol consumption is often associated with evening social events), and missed medication can lower seizure threshold and place the adolescent at risk for breakthrough seizures.
The ability to drive is a hallmark of moving toward adulthood and coveted by most teens. Driving recommendations for people with epilepsy is a controversial topic. In our jurisdiction, individuals must be seizure-free for 6 months to drive. The inability to drive because of ongoing seizures can be distressing for adolescents. Supportive strategies for medication adherence can help those adolescents whose seizures can be controlled with regular medication administration. Aiming for a seizure-free period to obtain a driver's license may motivate adolescents to adhere to their medication regime. For those adolescents who have intractable seizures, other options for independent transportation are discussed.
Independent Living Education/Career
Adolescents need to make postsecondary education and employment decisions. Some adolescents have a clear picture of where they want their lives to go, and others are still at an early stage of exploring their options. The decision to pursue education or employment can affect epilepsy management. Career options are discussed in the context of seizure control and the adolescent's particular type of epilepsy. Some careers, for example, a roofer or a welder, may not be an option for people with intractable seizures, but for most adolescents with epilepsy, there are minimal restrictions. Adolescents are encouraged to explore career options that capitalize on their interests and skills. A workbook about career options, scholarships, and bursaries is provided (Alberta Advanced Education and Technology, 2007). Strategies for management of school, workload, and potential stress, with the goals of maintaining balance and preventing breakthrough seizures, are explored. Regular sleep, healthy meals, and exercise are advocated. Development of social support networks is encouraged, and information is provided regarding social supports in the community such as the local epilepsy association.
We ease adolescents into independent management by starting with concrete tasks such as knowing who to contact in the epilepsy program, refilling prescriptions, getting to appointments independently, and demonstrating the ability to manage their epilepsy. We provide clear information on how to obtain and refill prescriptions, how to monitor the amount of their medication remaining, and where to locate their pharmacy telephone number. Each adolescent is questioned regarding the strategies they use to remember to take their medication and is offered suggestions such as the use of daily medication containers, alarms to remind them their medication is due, and linking their medication administration to daily tasks such as teeth brushing. We provide each adolescent with contact information for both their current pediatric healthcare providers and future adult healthcare providers.
Many teens and young adults have not considered budgeting for the cost of medication that may have previously been covered by parental healthcare plans. If they remain in school, parental healthcare plans may continue coverage for a period. If working, they may be faced with covering these costs, particularly if they have no employer benefits. We explain the options for purchasing individual healthcare coverage and advise that they check with their pharmacy regarding the cost of their medications.
A small proportion of adolescents with epilepsy will continue to be dependent throughout adulthood. We tailor the educational and employment information to what is appropriate for the individual's capacity and the family's needs. Adolescents with cognitive delay are involved in the transition appointment according to their individual ability. In these cases, we ensure that the caregivers are aware of government supports for adults, guardianship and trusteeship. Many of these processes take months for application and approval and need to be initiated long before the adolescent is 18 years old. We discuss resources for respite and day programs, but these vary by geographic location, with larger urban areas typically having more resources available.
As part of our program implementation, we conducted a process evaluation that elicited formal information from the adolescents and their caregivers and informal feedback from the adult epilepsy program. The goals were (a) to ensure that the learning needs of adolescents and caregivers have been met, (b) to demonstrate decreased fear associated with transition, (c) to prepare parents for the expectations and differences of the adult program, and (d) to determine whether nurses were appropriate program leaders. We gathered evaluative information from caregivers at two time points: the end of the transition clinic appointment and 2 to 3 months after at the first visit with the adult epileptologist. We developed a questionnaire that asked adolescents and their caregivers to rate statements regarding the benefit of transition clinic components, that is, strongly agree, agree, disagree, or strongly disagree.
Twenty-two were not completed by adolescents because they were dependent (9 women and 13 men). All caregivers and adolescents agreed or strongly agreed the clinic was beneficial. Areas rated highest were that nurses were appropriate leads for the clinic, that it was beneficial to connect with a member of the adult epilepsy team, and that the expectations of the transition process and adult program were clarified.
After the appointment with the adult epileptologist, chregivers and adolescents completed the final questibnnaire. Evaluations were completed with 78 adolescents (82%) and 66 caregivers (69%). Ninety-seven percent of female adolescents, all male adolescents, and 95% of caregivers agreed or strongly agreed that the transition appointment lessened fears associated with moving to the adult program. All adolescents and caregivers agreed or strongly agreed that meeting the nurse from the adult epilepsy program was beneficial and that their knowledge of adult issues was increased. All adolescents and caregivers rated nurses as an appropriate clinic lead. Ninety-four percent of female adolescents, 91% of male adolescents, and 95% of caregivers agreed or strongly agreed that the differences between the pediatric and the adult programs and the awareness that the pediatric program would continue to provide care during the transition process were clear.
What We Have Learned
The transition clinic is offered several times per year, excluding the months of September, December, and June. We found that in these months, adolescents are preoccupied with school, graduations, and examinations and often did not want to attend clinic. A unique and advantageous characteristic of our transition clinic is that our pediatric and adult programs are situated on the same site. We have come to appreciate that this is a marked advantage for collaboration. Members of the adult epilepsy team note substantial positive changes; for example, the adolescents and their caregivers now arrive at their initial visit with the adult epileptologist with clearer expectations and a more consistent knowledge base. The duration of initial visits with the adult epileptologist has decreased, and more time is available to focus on medical issues rather than issues that are more appropriately addressed by nurses.
Now that our first group of adolescents has completed the program, we are gradually moving to begin transition preparation in early adolescence and will continue the program to early adulthood. We have prepared a transition binder where personal medical information can be consolidated and general information and resources regarding epilepsy can be kept. With respect to the information covered in the clinic, we plan to address issues related to mood and epilepsy because depression is common and suicidal risk is increased among adolescents and young adults with epilepsy.
It is vital that adolescents with chronic illness have access to peer support (Olsson, Boyce, Toumbourou, & Sawyer, 2005). We are setting up a local and Web-based peer support and social group for adolescents with epilepsy. The goals of the support group are to enable young people to form a supportive peer network and to establish relationships with the nurses from the adult epilepsy program in an informal setting. Our hope is that the adolescents will assume a leadership role for the group that includes envisioning and planning the future of the group.
The perspectives of both the pediatric and the adult nurses have changed dramatically. The pediatric epilepsy nurse is aware of the inconsistency of developmentally appropriate education being provided to children. The adult epilepsy nurse is more aware of the need for continual involvement of caregivers in the medical management of adolescents with epilepsy. Although we remain inclusive of parents, we are now more cognizant of the need to empower the adolescent and continually increase independence. In the adult program, the nurse now has a greater understanding of the practical applications of adolescent growth and development and the importance of incorporating strategies for normalization for teens with epilepsy. The ongoing collaborative program has strengthened the pediatric-adult working relationships and enables a unique connection and mutual understanding between our programs. To expand this exchange, we are developing an Epilepsy Nursing Group that enables knowledge exchange regarding program development and local clinical evidence.
The transition of adolescents to adult healthcare services is an area that in recent years has gained increased notice and support from healthcare organizations. The findings of our Adolescent Epilepsy Transition Clinic program evaluation reveal that adolescents, caregivers, and healthcare professionals all benefit from a structured epilepsy transition program. Adolescents and caregivers receiving consistent education regarding epilepsy, independence, and self-management are encouraged, and differences between the pediatric and the adult programs are discussed. The nurse-led format has been proven to effectively meet the needs of adolescents and caregivers. By providing a connection to the adult epilepsy program through the nurse-led model, anticipatory anxiety associated with transition has decreased. The adult epilepsy program has identified an increase in the adolescent's and caregiver's level of preparation at the initial clinic visit. The close working relationships developed between the pediatric and the adult epilepsy teams at the Stollery Children's Hospital and at the University of Alberta Hospital facilitate the essential collaboration needed for a smooth transition. Utilization of the model for developing working knowledge for adolescents with epilepsy has been demonstrated to be invaluable in the ongoing success of our program. This model could be used for adolescents transitioning to adult healthcare living with other chronic illnesses. Future research should address the utilization of this model for adolescents with other chronic health conditions transitioning to adult healthcare.
APPENDIX A. Adolescent Epilepsy Transition Clinic--Teaching Checklist
 Seizure type
 Date of last seizure--
 Seizure first aid/status epilepticus
 Medications and side effects
 Recording seizures/seizure triggers
 Sexual Health
 Roles of family/support systems
 Home safety
 Bone health
 Edmonton epilepsy association
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Questions or comments about this article may be directed to Laura Jurasek, NPMN RN, at Laura.Jurasek@capitalhealth.ca. She is a nurse practitioner in Pediatric Neurology, Stollery Children's Hospital, Edmonton, Alberta, Canada.
Lynne Ray, PhD RN, is an associate professor in the Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada.
Daphne Quigly, RN BScN, is a nurse coordinator in the Adult Epilepsy Program, University of Alberta Hospital, Edmonton, Alberta, Canada.
APPENDIX B. Adolescent Epilepsy Transition Clinic--Client Questionnaire Please circle yes or no. 1. I know the names of the doctors I see. Yes No 2. I know how to book a doctor appointment. Yes No 3. I can get to my own appointments. Yes No 4. I know the names of my medications, Yes No the dose and what they do. 5. I know my pharmacy phone # and how Yes No to refill a prescription. Please rate from 1-5 how important the following information is to you, 1 being least important and 5 being most important. 1. How important is it to know the name of your condition and information about it? 1 2 3 4 5 2. How important is it to know about the use of tobacco, alcohol and drugs in relation to epilepsy? 1 2 3 4 5 3. How important is it to know about effective birth control and your epilepsy medications? 1 2 3 4 5 4. How important is it to know about bone health and epilepsy medications? 1 2 3 4 5 5. How important is it to know about finances, employment and/or school in relation to epilepsy? 1 2 3 4 5 6. How important is it to know about driving and epilepsy? 1 2 3 4 5 7. How important is it to know about triggers for seizures? 1 2 3 4 5 APPENDIX C. Adolescent Epilepsy Transition Clinic--Parent Questionnaire Please rate from 1-5 how important the following information is to you, 1 being least important and 5 being most important. 1. How important is it to know the name of your child's condition and information about it? 1 2 3 4 5 2. How important is it to know about the use of tobacco, alcohol and drugs in relation to epilepsy? 1 2 3 4 5 3. How important is know about effective birth control and epilepsy medications? 1 2 3 4 5 4. How important is it to know about bone health and epilepsy medications? 1 2 3 4 5 5. How important is it to know about finances, employment and/or school in relation to epilepsy? 1 2 3 4 5 6. How important is it to know about driving and epilepsy? 1 2 3 4 5 7. How important is to know about triggers for seizures? 1 2 3 4 5
TABLE 1. Assessment of Independence in Epilepsy Management (N = 97) Item Yes (%) No (%) I know the names of the 73 27 doctors I see I know how to book a 63 36 doctor's appointment I can get to my own 63 36 appointments I know the names of my 83 17 medications, the doses, and what they do I know my pharmacy 59 41 telephone number and how to refill a prescription
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