Treating childhood intermittent distance exotropia: a qualitative study of decision making

Lecouturier et al. BMC Ophthalmology (2015) 15:112 DOI 10.1186/s12886-015-0087-y RESEARCH ARTICLE Open Access Treating childhood intermittent distance exotropia: a qualitative study of decision making Jan Lecouturier1, Michael P. Clarke2, Gail Errington3, Nina Hallowell4, Madeleine J. Murtagh5 and Richard Thomson1* Abstract Background: Engaging patients (parents/families) in treatment decisions is increasingly recognised as important and beneficial. Yet where the evidence base for treatment options is limited, as with intermittent distance exotropia (X(T)), this presents a challenge for families and clinicians. The purpose of this study was to explore how decisions are made in the management and treatment of X(T) and what can be done to support decision-making for clinicians, parents and children. Methods: This was a qualitative study using face to face interviews with consultant ophthalmologists and orthoptists, and parents of children with X(T). Interview data were analysed using the constant comparative method. Results: The drivers for clinicians in treatment decision-making for X(T) were the proportion of time the strabismus is manifest and parents’ views. For parents, decisions were influenced by: fear of bullying and, to a lesser degree, concerns around the impact of the strabismus on their child’s vision. Uncertainty around the effectiveness of treatment options caused difficulties for some clinicians when communicating with parents. Parental understanding of the nature of X(T) and rationale for treatment often differed from that of the clinicians, and this affected their involvement in decision-making. Though there were good examples of shared decision-making and parent and child engagement some parents said the process felt rushed and they felt excluded. Parents reported that clinicians provided sufficient information in consultations but they had difficulties in retaining verbal information to convey to other family members. Conclusions: Overall parents were happy with the care their child received but there is scope for better parent and (where appropriate) child engagement in decision-making. There was an expressed need for written information about X(T) to reinforce what was given verbally in consultations and to share with other family members. Access could be via the hospital website, along with videos or blogs from parents and children who have undergone the various management options. A method of assisting clinicians to explain the treatment options, together with the uncertainties, in a clear and concise way could be of particular benefit to orthoptists who have the most regular contact with parents and children, and are more likely to suggest conservative treatments such as occlusion and minus lenses. Keywords: Shared decision making, Intermittent distance exotropia, Children, Qualitative research, Treatment uncertainty * Correspondence: 1 Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle upon Tyne NE2 4AX, UK Full list of author information is available at the end of the article © 2015 Lecouturier et al. Open Access This article is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Lecouturier et al. BMC Ophthalmology (2015) 15:112 Background Intermittent distance exotropia (X(T)) is a form of childhood squint (strabismus) with an estimated prevalence of 1 % in children under 11 years [1]. The strabismus is exacerbated when the child focuses on distant objects, is tired or daydreaming, and may be accompanied by monocular eyelid closure in bright sunlight. The natural history of X(T) is uncertain; study findings vary and most are methodologically flawed [2]. A current large scale randomised controlled trial of occlusion for the treatment of X(T) in the United States, due for completion in 2015, may answer this question, as a secondary objective is to determine the natural history of X(T) in patients aged 3 to 11 years [3]. The longer term risks to a young child with X(T) are amblyopia (decreased vision due to developmental anomaly resulting from the strabismus) or loss of binocular vision. For this reason a child’s vision and strabismus will be regularly monitored. Psychosocially, a key concern is childhood bullying resulting from stigma associated with the appearance of the strabismus. However, research has tended to focus on the impact of manifest strabismus [4–7]. Due to its intermittent nature it is not certain if stigma and bullying are an issue for the majority of children with X(T). Children with X(T) normally present between the ages of 2 to 4 years when divergent misalignment or monocular eye closure is observed [8]. In the UK, options for management of X(T) include observation, orthoptic exercises to strengthen binocular single vision, occlusion, minus lenses, prisms and surgery. Evidence for superiority of any of these options is sparse. A literature review [9] concluded that conservative management options were a viable alternative or adjunct to surgery, but that further research was needed to determine the “dosage” of occlusion and the effectiveness of minus lenses. A recent study [10] that compared part-time occlusion with observation in children aged 3–10 years of age reported a slightly lower rate of deterioration with the latter; they concluded that X(T) could be reasonably managed with either option. A Cochrane review of interventions for X(T) [2] identified only one randomised controlled trial in which unilateral and bilateral surgery were compared; the former was found to be more effective in correcting the strabismus [11]. Due to the lack of robust evidence, the authors conclude that issues around the optimum age for surgery remain unresolved and the effectiveness of non-surgical interventions remains unclear. A recent systematic review concluded that, given the limited evidence base, better designed studies are required to address the question of the most effective management and treatment of childhood X(T) and that consensus is required on what constitutes a successful outcome [12]. This uncertainty around the most appropriate management of X(T) has implications for families and clinicians making decisions about treatment. Shared decision making Page 2 of 10 (SDM), engaging patients (parents/families) in decisions about treatment when there are alternative options - particularly where the risks, benefits and consequences of the options vary - is increasingly recognised as important and beneficial [13] and is embedded in health policy [14, 15]. SDM may be differentiated from more traditional (...truncated)