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What matters to patients and their families in the management of adolescent idiopathic scoliosis?
The Spine Journal 16 (2016) S97–S99
Oral Presentations Adolescent Idiopathic Scoliosis What matters to patients and their families in the management of adolescent idiopathic scoliosis? Francine Toye, Esther Williamson, Mark Williams, Jeremy Fairbank, Sarah Lamb; Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Windmill Rd, Oxford OX3 7HE BACKGROUND CONTEXT: This qualitative study was part of a larger project that evaluated the feasibility of conducting a randomised controlled trial of exercises for young people with adolescent idiopathic scoliosis (AIS) (The ACTiVATeS Study ISRCTN90480705). Current UK management for AIS includes monitoring, bracing for some and, for the most progressive and serious cases, surgery. Exercise is a promising nonsurgical intervention for AIS that needs more research. Qualitative research can allow us to incorporate a patient’s experience into the design and evaluation of interventions. PURPOSE: We aimed to explore participants’ perception of the trial, the issues influencing exercise adherence and the appropriateness of the chosen outcome measurement. STUDY DESIGN/SETTING: Qualitative research embedded within a randomised feasibility study at four NHS trusts across England which recruited 58 patients with AIS. PATIENT SAMPLE: 6 adolescents with AIS, 8 parents and 4 physiotherapists participating in the ACTiVATeS Study. This sample size is appropriate for the chosen methodology which aims to explore experience in depth. OUTCOME MEASURES: Not applicable. METHODS: We used semi-structured interviews to explore the experience of adolescents with AIS, parents and physiotherapists. Interviews were digitally recorded and transcribed verbatim. We used the methods of interpretive phenomenological analysis to interpret the data. This involves sorting the interview material into progressively abstracted thematic groups with the aim of developing a meaningful interpretation. We used a computerised programme to assist analysis. This study was funded by the National Institute of Health Research Health Technology Assessment Programme (NIHR HTA), project number 10/38/03. The authors have no conflict of interests to declare. RESULTS: This study presents themes that help us to understand what matters to patients with AIS, their families and physiotherapists in the context of a study evaluating exercise treatments. Our findings include the following categories: (1) it won’t necessarily change the bony bits; (2) I didn’t realise I stood like that; (3) she doesn’t mention the pain now; (4) it gives her a sense of control; (5) creating a space for concerns; (6) they talked to her like a person. CONCLUSIONS: What matters to patients with AIS and their families may be different from what matters to clinicians. Our qualitative findings raise issues about which valued aspects of health care should drive the management and evaluation of AIS. These decisions have implications for intervention design, research and commissioning, namely, who decides what a valued outcome is, how do we measure valued outcomes and how do we decide what outcomes we should fund? CONFLICTS OF INTEREST: None. FUNDING SOURCES: National Institute of Health Research Health Technology Assessment Programme (NIHR HTA), project number 10/38/03. http://dx.doi.org/10.1016/j.spinee.2015.12.035
Can photographs quantify cosmesis in adolescent idiopathic scoliosis (AIS)? Amy Lambert, Ashley Cole, Lee Breakwell, A.L. Rex Michael; Sheffield Children’s Hospital, Sheffield BACKGROUND CONTEXT: Clinical photography is used in patients with adolescent idiopathic scoliosis (AIS) as a way of recording and monitoring a patient’s cosmetic appearance, but there is little work looking at using them to quantify trunk cosmesis before and after surgery. PURPOSE: To identify which area of the back, if any, has the largest influence on overall cosmesis results and determine the relationship between radiographic and photographic cosmesis. STUDY DESIGN/SETTING: A retrospective review of photographs obtained before and after surgery in AIS at Sheffield Children’s Hospital. PATIENT SAMPLE: 20 female AIS patients having selective thoracic fusion (STF). Mean age at first surgery is 13.3±1.4, range 11–16. Six patients had been offered revision surgery at 1 year due to poor radiological outcome and two underwent further surgery. OUTCOME MEASURES: Clinical photographs before and 1 year after surgery. METHODS: Twenty-five judges, split into five professions scored each photograph between 0 and 10 (0=excellent, 10=worst possible), and mean scores were calculated. The data were checked for normality and equal variances, and the significance level was set at p<.05. RESULTS: The score for the whole back photograph was mean 6.1 (standard deviation [SD] 0.9) before surgery and mean 2.8 (SD 0.8) after surgery, an improvement of 55%. Before surgery the score from a photograph just showing the right side of the trunk had the highest correlation with the overall score (r=0.7; p<.001). One year after surgery a photograph showing just the lower half of the trunk had the highest correlation with the overall score (r=0.8; p<.001). Patients offered revision surgery did not have a significantly worse cosmesis score (mean 3.5) than those not offered revision surgery (mean 2.5). CONCLUSIONS: Overall, an STF has a very good cosmetic outcome after surgery. The results demonstrate that before surgery the right-sided score has the most significant association with the overall image score, suggesting that the rib-hump rather than the lateral curve is the most influential cosmetic factor. One year after surgery the lumbar score had the most significant association with the overall image score, possibly because the lumbar spine is left unfused and mobile after STF. Previous studies have discussed waistline asymmetry as an influential factor in scoring trunk cosmesis. The results suggest that both the preoperative rib hump and postoperative lumbar spine could potentially assist in quantifying a patient’s overall cosmesis. Those patients offered extension of the fusion for a perceived poor radiological outcome do not have a significantly worse subjective postoperative cosmesis score. CONFLICTS OF INTEREST: No conflicts of interest. FUNDING SOURCES: No funding obtained. http://dx.doi.org/10.1016/j.spinee.2015.12.036
The role of the DIERS 4D formetric system in objectively quantifying the deformity seen in adolescent idiopathic scoliosis (AIS) Amy Lambert, Ashley Cole, Lee Breakwell, A.L. Rex Michael; Sheffield Children’s Hospital, Sheffield BACKGROUND CONTEXT: Surface topography, such as the DIERS 4D formetric system, can quantify objectively the degree of deformity seen in adolescent idiopathic scoliosis (AIS). There few studies looking into its reliability.
Oral Presentations Adolescent Idiopathic Scoliosis What matters to patients and their families in the management of adolescent idiopathic scoliosis? Francine Toye, Esther Williamson, Mark Williams, Jeremy Fairbank, Sarah Lamb; Nuffield Orthopaedic Centre, Oxford University Hospitals NHS Trust, Windmill Rd, Oxford OX3 7HE BACKGROUND CONTEXT: This qualitative study was part of a larger project that evaluated the feasibility of conducting a randomised controlled trial of exercises for young people with adolescent idiopathic scoliosis (AIS) (The ACTiVATeS Study ISRCTN90480705). Current UK management for AIS includes monitoring, bracing for some and, for the most progressive and serious cases, surgery. Exercise is a promising nonsurgical intervention for AIS that needs more research. Qualitative research can allow us to incorporate a patient’s experience into the design and evaluation of interventions. PURPOSE: We aimed to explore participants’ perception of the trial, the issues influencing exercise adherence and the appropriateness of the chosen outcome measurement. STUDY DESIGN/SETTING: Qualitative research embedded within a randomised feasibility study at four NHS trusts across England which recruited 58 patients with AIS. PATIENT SAMPLE: 6 adolescents with AIS, 8 parents and 4 physiotherapists participating in the ACTiVATeS Study. This sample size is appropriate for the chosen methodology which aims to explore experience in depth. OUTCOME MEASURES: Not applicable. METHODS: We used semi-structured interviews to explore the experience of adolescents with AIS, parents and physiotherapists. Interviews were digitally recorded and transcribed verbatim. We used the methods of interpretive phenomenological analysis to interpret the data. This involves sorting the interview material into progressively abstracted thematic groups with the aim of developing a meaningful interpretation. We used a computerised programme to assist analysis. This study was funded by the National Institute of Health Research Health Technology Assessment Programme (NIHR HTA), project number 10/38/03. The authors have no conflict of interests to declare. RESULTS: This study presents themes that help us to understand what matters to patients with AIS, their families and physiotherapists in the context of a study evaluating exercise treatments. Our findings include the following categories: (1) it won’t necessarily change the bony bits; (2) I didn’t realise I stood like that; (3) she doesn’t mention the pain now; (4) it gives her a sense of control; (5) creating a space for concerns; (6) they talked to her like a person. CONCLUSIONS: What matters to patients with AIS and their families may be different from what matters to clinicians. Our qualitative findings raise issues about which valued aspects of health care should drive the management and evaluation of AIS. These decisions have implications for intervention design, research and commissioning, namely, who decides what a valued outcome is, how do we measure valued outcomes and how do we decide what outcomes we should fund? CONFLICTS OF INTEREST: None. FUNDING SOURCES: National Institute of Health Research Health Technology Assessment Programme (NIHR HTA), project number 10/38/03. http://dx.doi.org/10.1016/j.spinee.2015.12.035
Can photographs quantify cosmesis in adolescent idiopathic scoliosis (AIS)? Amy Lambert, Ashley Cole, Lee Breakwell, A.L. Rex Michael; Sheffield Children’s Hospital, Sheffield BACKGROUND CONTEXT: Clinical photography is used in patients with adolescent idiopathic scoliosis (AIS) as a way of recording and monitoring a patient’s cosmetic appearance, but there is little work looking at using them to quantify trunk cosmesis before and after surgery. PURPOSE: To identify which area of the back, if any, has the largest influence on overall cosmesis results and determine the relationship between radiographic and photographic cosmesis. STUDY DESIGN/SETTING: A retrospective review of photographs obtained before and after surgery in AIS at Sheffield Children’s Hospital. PATIENT SAMPLE: 20 female AIS patients having selective thoracic fusion (STF). Mean age at first surgery is 13.3±1.4, range 11–16. Six patients had been offered revision surgery at 1 year due to poor radiological outcome and two underwent further surgery. OUTCOME MEASURES: Clinical photographs before and 1 year after surgery. METHODS: Twenty-five judges, split into five professions scored each photograph between 0 and 10 (0=excellent, 10=worst possible), and mean scores were calculated. The data were checked for normality and equal variances, and the significance level was set at p<.05. RESULTS: The score for the whole back photograph was mean 6.1 (standard deviation [SD] 0.9) before surgery and mean 2.8 (SD 0.8) after surgery, an improvement of 55%. Before surgery the score from a photograph just showing the right side of the trunk had the highest correlation with the overall score (r=0.7; p<.001). One year after surgery a photograph showing just the lower half of the trunk had the highest correlation with the overall score (r=0.8; p<.001). Patients offered revision surgery did not have a significantly worse cosmesis score (mean 3.5) than those not offered revision surgery (mean 2.5). CONCLUSIONS: Overall, an STF has a very good cosmetic outcome after surgery. The results demonstrate that before surgery the right-sided score has the most significant association with the overall image score, suggesting that the rib-hump rather than the lateral curve is the most influential cosmetic factor. One year after surgery the lumbar score had the most significant association with the overall image score, possibly because the lumbar spine is left unfused and mobile after STF. Previous studies have discussed waistline asymmetry as an influential factor in scoring trunk cosmesis. The results suggest that both the preoperative rib hump and postoperative lumbar spine could potentially assist in quantifying a patient’s overall cosmesis. Those patients offered extension of the fusion for a perceived poor radiological outcome do not have a significantly worse subjective postoperative cosmesis score. CONFLICTS OF INTEREST: No conflicts of interest. FUNDING SOURCES: No funding obtained. http://dx.doi.org/10.1016/j.spinee.2015.12.036
The role of the DIERS 4D formetric system in objectively quantifying the deformity seen in adolescent idiopathic scoliosis (AIS) Amy Lambert, Ashley Cole, Lee Breakwell, A.L. Rex Michael; Sheffield Children’s Hospital, Sheffield BACKGROUND CONTEXT: Surface topography, such as the DIERS 4D formetric system, can quantify objectively the degree of deformity seen in adolescent idiopathic scoliosis (AIS). There few studies looking into its reliability.