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HEEADSSS assessment for adolescents requiring anticoagulation therapy
  1. Sophie Jones1,2,3,4,
  2. Eliza Mertyn1,
  3. Paulina Alhucema4,
  4. Paul Monagle1,3,4,
  5. Fiona Newall1,2,3,4
  1. 1Department of Paediatrics, The University of Melbourne, Melbourne, Australia
  2. 2Department of Nursing, The University of Melbourne, Melbourne, Australia
  3. 3Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Australia
  4. 4Department of Clinical Haematology, Royal Children's Hospital, Melbourne, Australia
  1. Correspondence to Sophie Jones, Department of Clinical Haematology, The Royal Children's Hospital, 4th Floor East Building, Flemington Road, Parkville, VIC 3052, Australia; sophie.jones{at}rch.org.au

Abstract

The care of adolescents with complex chronic illness needs to be developmentally appropriate to encourage adherence, knowledge retention and self-management. There has been an increase in the number of adolescents requiring long-term or lifelong anticoagulation therapy, related to either an underlying illness or idiopathic deep vein thrombosis. The burden of anticoagulant therapy, the associated risks and the required lifestyle changes can significantly impact on psychosocial well-being in the adolescent patient. This review identifies issues pertinent to adolescent anticoagulation management and discusses strategies to support optimal management. The HEEADSSS (Home, Education and employment, Eating, Activities with peers, Drugs, Sexual activity, Suicide and depression, and Safety) framework was used to provide guidance in undertaking a psychosocial assessment of adolescents requiring anticoagulant therapy in conjunction with a structured education strategy. Adolescent anticoagulant management strategies employing developmentally appropriate assessment and education will likely result in improved therapeutic outcomes for the patient and potentially facilitate transition to adult-based care.

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Introduction

Anticoagulation therapy (AT) is indicated in children and adolescents who have had or are at risk of thrombosis. Tertiary paediatrics has seen an increase in the number of children requiring anticoagulant therapy1,,4 due to the increased survival rates of patients with childhood diseases, coupled with the increased use of central venous catheters.2 3 Adolescent patients requiring anticoagulant therapy are similar to the broader population of children requiring such therapy. The majority will have a major underlying illness that confers a significantly increased risk of thrombosis and therefore long-term to lifelong thromboprophylaxis is required.5 In contrast to the broader paediatric population requiring anticoagulant therapy, idiopathic deep vein thrombosis (DVT) is more prevalent among teenagers and often necessitates prolonged anticoagulant therapy.1 5 This difference is likely due to the dynamic nature of haemostasis that creates a thromboprotective environment in younger children but approaches adult-like parameters in the teenage years.6

Anticoagulant management in children is affected by many factors, such as co-morbidities, increased metabolic demands, growth, diet and interactions with other medications.1 7,,9 Structured education is a recognised strategy aiming to improve AT control, stability and compliance by encouraging improved patient understanding of AT, its complex interactions and dosing requirements.9,,11 The risk of complications associated with AT is high, especially when the patient's therapy is unstable.11 12 The provision of AT education is seen as an integral part of successful anticoagulation management as education is imperative to minimise the risk of adverse events.5

With an increase in the number of children requiring long-term AT and the availability of home management strategies, patient and family education practices have been developed.7,,9 13,,15 Yet, little attention to date has focused on adolescents requiring AT, except for some data indicating that next to infants below 1 year of age, adolescents are the most challenging population to manage safely in terms of stability of therapy.1 3

Adolescents must be recognised as a unique population with specific healthcare needs.16 17 Significant attention has been given in the published literature to the management issues for adolescents with chronic diseases such as diabetes, juvenile arthritis and asthma.17,,23 Nonetheless, there continues to be a lack of appreciation of the psychosocial impact of changes in health status for adolescents and the need to incorporate a thorough psychosocial assessment into the management of any illness.16 24,,26 This is particularly true in the area of anticoagulant management.

Best practice standards for adolescent care include a comprehensive health risk screen, incorporating a psychosocial assessment such as HEEADSSS (Home, Education and employment, Eating, Activities with peers, Drugs, Sexual activity, Suicide and depression, and Safety).17 25 27 In addition to a standard psychosocial assessment, adolescent review in the setting of anticoagulant management needs to include individualised anticoagulation education. Armed with such knowledge, strategies and supports can be organised to maximise the adolescent's capabilities to reach optimal health and quality of life.28 29 This paper reviews the role of a recognised theoretical framework (HEEADSSS) in adolescent anticoagulant management.

Methods

A database search using MEDLINE, CINAHL and PsychINFO was conducted using the following key search terms: ‘adolescent’ or ‘teenager’ or ‘young adult’, ‘warfarin’, ‘anticoagulation’ or ‘anticoagulant’, ‘education’, ‘psychosocial assessment’, ‘HEEADSSS’. Combinations of the search terms were used to narrow the search to identify articles related to this review. The search was restricted to articles, including commentaries, editorials and reviews, published in English between January 1990 and January 2011 and limited to children under 18 years of age. Reference lists of retrieved articles were searched and articles not identified in the database search were included in the review. All articles on anticoagulation management in children that reported an education component or discussed the use of psychosocial assessment were included. Literature pertaining to the provision of education or psychosocial assessment of adolescents with chronic illness was also included. Papers referring to the HEEADSSS framework were sought out.

Table 1 provides an outline of the domains included in a HEEADSSS assessment. Discussions facilitated through use of the HEEADSSS assessment enables identification of activities the adolescent may be engaging in that place them at risk of harm. With this information, education or anticipatory guidance can be provided.27 30

Table 1

Outline of domains included in a HEEADSSS assessment

Adapted from the Royal Children's Hospital.31

Results

Anticoagulation education strategies specifically for children and parents were identified in seven papers in the literature, two of which detailed validation of an education program.7,,9 11 13,,15 Despite this recent trend for structured education for paediatric patients requiring AT, no papers identified described AT education specifically tailored for adolescents. Similarly, no papers included a psychological assessment for children or adolescents requiring AT. Literature concerning adolescent chronic disease management was more helpful in informing the provision of adolescent specific education and psychological support. The advice from the adolescent literature integrated with the requirements for safe paediatric anticoagulation management is discussed here. This paper proposes adaptation of a structured AT education plan (previously established within an anticoagulation clinic)11 to incorporate a targeted assessment using HEEADSSS.

AT education

The content of anticoagulation education for children and families has been well described previously and has been found to be more successful when based on an established model of health education.5 7 9 11 32 AT education should encompass a discussion of the action and indication for AT, monitoring requirements, confounders to stable therapy, side effects and appropriate contacts in the event of an emergency.5 9 11

Individualised education

The attitudes patients have regarding their own healthcare influence their adherence to treatment and behavioural modification, especially among adolescents with chronic illnesses.33,,35 Poor control of anticoagulant therapy is the most significant predictor of treatment-related adverse events.11 12 Individualised education and support can empower adolescents to develop positive self-caring behaviours and promote knowledge accrual and retention.33 34 36,,39 Thus, the significance of face-to-face, individualised education and support for adolescents requiring AT cannot be underestimated.33 34 36 38 39

The education provided needs to be appropriate to the adolescent's developmental age, gender, underlying condition and indication for anticoagulant therapy.5 20 32 35 Consideration of the adolescent's past experiences or past education ensures the education delivered builds on their current knowledge, identifies knowledge deficits and directs future education activities.5 32 Adolescents with a chronic illness may engage in more high-risk behaviours compared to their healthy counterparts,27 40 41 placing them at increased risk of harm. This is an important consideration for adolescents requiring AT as high-risk behaviours such as alcohol and/or drug use and purposeful non-adherence may be life threatening.32 Consensual sexual activity can also represent a significant concern due to the potentially teratogenic effects of warfarin. Understanding that adolescents are likely to participate in these behaviours as a part of their normal development is the first step in providing management strategies to minimise harm and optimise treatment outcomes.11 17 A structured approach to education ensures the adolescent's needs are addressed and high-risk behaviours or symptoms identified can be discussed in the context of their AT. For example, it may not be appropriate to discuss pregnancy and contraception related to AT with all adolescent girls, especially in early adolescence. By using the HEEADSSS framework, the girls who may be sexually active can be identified and appropriate discussions about pregnancy and contraception can be initiated.

The lifestyle modifications associated with AT may impact upon adherence and psychosocial well-being due to the associated burden.37 42 The lifestyle changes for previously well adolescents who have developed a spontaneous DVT and now require prolonged AT are considerable. This sudden lifestyle change is an inherently different experience for this cohort of adolescents compared to adolescents who have been on long-term AT due to an underlying illness. Consideration of the context in which AT is required can lead to discussions about the adolescent's self-perception of the effect of therapy on their overall well-being.37 42 Such conversations enable the clinician to determine if the adolescent may benefit from multi-disciplinary support, such as specialist adolescent health, mental health, or gynaecological referral.10 30 38 43 Seeing an adolescent on their own for at least part of a consultation can facilitate optimal evaluation of the adolescent's well-being and need for such referral.17

Self management of AT

The adolescent's emerging desire for independence must be acknowledged during healthcare interactions. However, the role of parents and family support in promoting self-management cannot be underestimated.20 32 The role of clinicians in listening to and supporting parents to promote their adolescents' self-caring abilities is as important as engaging the adolescent themselves.20 32 There is also evidence from the field of adolescent diabetes management that disease control improves when adolescents feel in control of their bodies and their own treatment, contributing to reducing complications.37 44 Self-management of AT may include taking the AT as prescribed, attending to monitoring tests as required, refraining from high-risk behaviours and maintaining a healthy diet. Among adults requiring AT, strategies that promote self-management, such as self-testing and self-dosing of warfarin therapy, have been associated with improved therapeutic control and reduced adverse-event risk.45 The development of anticoagulation management strategies suitable for children, such as self-testing of the international normalised ratio (INR) at home, enables adolescents to have an increased role in the management of their therapy.

Adolescent anticoagulant management using HEEADSSS

From the recommendations in the literature, adolescent assessment in the setting of anticoagulation management needs to include a psychosocial assessment and the delivery of individualised education. The HEEADSSS framework can be used to complete this assessment, and guide the provision of education. Online supplementary table 2 presents the questions pertinent to the management of an adolescent patient requiring AT using the HEEADSSS framework as a guide. The content within this table is not intended to be a checklist completed in one visit. At each consultation, the clinician can target educational priorities based upon assessment of identified needs and at subsequent consultations, the HEEADSSS guide can be used to identify ongoing priority areas for education.

Conclusion

This paper addresses the identified gap in the current evidence for anticoagulation management of adolescents. As evidenced by other cohorts (diabetes, juvenile arthritis and asthma), improved symptom management and stable therapy can be achieved when adolescents' educational and psychological needs are met. The proposed integration of the HEEADSSS tool with current education strategies for anticoagulation management addresses the deficit in guidelines in this area. Adolescents requiring anticoagulant therapy will benefit immediately and the process can also positively influence their transition to adult health services. Application of the HEEADSSS framework of assessment to this patient population promotes the development of each adolescent's self-management potential in a supportive environment. Further evaluation of the outcomes of health assessment and education directed by this instrument in adolescent patients on warfarin will be undertaken.

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Footnotes

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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