Background: Instruments for the psychological assessment of people with idiopathic scoliosis (PwIS) are required to design and plan interventions and services for this population. The few instruments available such as the Scoliosis Research Society Outcome Instrument¹ rely on single item measures, omit important domains such as coping, and are not validated for use by the UK population. Therefore, the aim of this study was to assess the psychometric properties of a battery of existing instruments to measure the psychosocial functioning of PwIS in the UK.

Methods: A non-experimental design was used to examine the psychometric properties of the following scales: Functional Dimensions of Coping (FDC); Iowa Body Image (IBI); Acceptance of Scoliosis (AoS); Quality of Life Profile for Spine Deformities (QoLPSD); Multidimensional Health Locus of Control (MHLoC); and the McGill Pain Questionnaire (MPQ). A sample of 126 PwIS (88% female) with a mean age 39.0 years. The number with thoracic, thoraculumbar, double major and lumbar curves was 26 (41.3%), 16 (25.4%), 16 (25.4%) and 5 (7.9%) respectively. Sixty one (48.4%) had undergone some form of surgery. The instruments were assessed in terms of factor structure (factor analysis); internal reliability (Cronbach’s alpha); discriminant validity (examining significant correlations with > 5% overlap in variance, i.e. r > 0.022); construct validity (correlations between one construct such as HRQoL and another construct that is expected to covary such as pain); and sensitivity (correlations between scores on the instruments and patient factors such as Cobb angle).

Results: The instruments had clearly defined factor structures that confirmed previous research and the sub-scales were universally reliable (Cronbach’s alpha ≥ 0.7; range 0.7 – 0.95). Except for MHLoC the instruments possessed adequate discriminant validity. Construct validity was demonstrated by 70% overlap in variance between AoS and HRQoL – Psychosocial Functioning subscale and significant correlations between HRQoL – Sleep Disturbances and HRQoL – Back Pain with all the MPQ subscales. Subscales on all the instruments (except MHLoC) were sensitive to differences in patient variables (e.g. age and Cobb angle).

Conclusion: Given the excellent psychometric properties of the instruments used, we propose a new outcome measure ‘The Scoliosis Psychosocial and Pain Profile Inventory’ (SPPPI), that consists of the following instruments: FDC, IBI, AoS, QoLPSD, and MPQ. Further research is needed investigate the test re-test reliability and responsiveness of the SPPPI after the delivery of medical, surgical and psychosocial interventions.

Background: Despite people with idiopathic scoliosis (PwIS) experiencing pain (typically radicular that is often unrelated to clinical factors) of significantly greater frequency and severity to matched controls and the general population¹, a paucity of attention has been devoted to elucidating psychosocial correlates of pain in this population. Therefore, the aim of this study was to investigate the predictive value of clinical and psychosocial factors for the pain experiences of PwIS in the UK.

Methods: A questionnaire-based design was used to examine associations between pain experiences, sociodemographic, medical, treatment and psychosocial factors (stressors, coping styles, coping functions, perceived body image [PBI], acceptance of scoliosis [AoS], health-related quality of life [HRQoL] and Health Locus of Control [HLoC]). A sample of 126 PwIS (88% female) with a mean age 39.0 years. Mean age at onset, Cobb angle before and treatment was 16.6 years, 57.9°, and 36.4° respectively. The number with thoracic, thoracolumbar, double major and lumbar curves was 26 (41.3%), 16 (25.4%), 16 (25.4%) and 5 (7.9%) respectively. Sixty one (48.4%) had undergone some form of surgery. Pain experiences (presence [yes, no], intensity, description and location/distribution of pain) were assessed with the McGill Pain Questionnaire (MPQ). Medication use and factors reported by PwIS to increase and reduce their pain were assessed with open-ended questions.

Results: The majority (85%) of PwIS reported pain and 56% reported using medication for pain due to scoliosis. Logistic regression revealed that medication use was associated with undergoing surgery, increased sleep disturbances and reporting that medication decreased their pain. Presence of pain was correlated with education stressors, coping functions (emotional regulation and avoidance), AoS and HRQoL. Predictors of MPQ measures were predominately psychosocial factors. Pain intensity was predicted by pre-treatment Cobb angle, PBI, HRQoL, absence of stress due to inadequate hospital services and reporting abdominal pain. Total pain on the MPQ was associated with absence of bereavement stressors, increased satisfaction with appearance before adolescence, HRQoL, not taking medication and reporting abdominal pain.

Conclusion: The findings indicate that psychosocial interventions have the potential to impact positively on the prevalence of pain, analgesic usage and satisfaction with healthcare in PwIS. The findings also highlight a need to develop clinical guidelines for the multidisciplinary management of scoliosis that adequately address the medical and psychological aspects of this condition.

Background: Despite the benefits of quality information material, there is a dearth of research on the information needs of people with scoliosis (PwS). The aim of this study was to identify the information needs of PwS including preferences for the presentation of benefit/ risk information, in order to inform the design of written information for this population.

Methods: A questionnaire-based design was used to identify the importance attached to characteristics of information material, scoliosis-related knowledge, preferred treatment decision-making role, preferences for presentation of risk information and current information needs. A sample of 73 PwS (86% female, mean age 41.9 years). The majority (74%) had at least an A’ level standard of education and 60% had undergone some type of surgery. The importance of 13 characteristics of information material was assessed using criteria described by previous research¹. PwS were asked to rate their level of knowledge on 20 scoliosis-related topics. The Control Preference Scale was used to assess treatment decision-making role. Preferences for the presentation of risk information was assessed in terms of (a) absolute versus relative risk, (b) loss versus gain information, and (c) perceived clarity of different methods for presenting benefit/risk information. An open-ended question requested PwS to state their current information needs.

Results: Characteristics of information material assigned the highest importance were: information on benefits/ risks of treatment; coverage of all relevant treatments; and clear information on probability of benefits/risks of treatments. Scoliosis-related knowledge was rated below average for 14 of the 20 topics. The majority (88%) expressed a preference for an active or collaborative role in treatment decisions. The majority also preferred to be presented with information on benefits/ risks in both absolute and relative terms, and informed of both loss and gain information. Bar graphs and pie charts were assigned the highest clarity ratings for the presentation of benefit/risk information. Content analysis revealed 27 mutually exclusive categories of current information needs and the rank order of the top 3 were: psychological services and psychosocial support; surgery; and aftercare and self-management.

Conclusion: PwS lack knowledge about their condition, desire both psychological and medical information and wish to be involved in treatment decisions. Based on the results, written information will be designed to address the salient information needs of PwS. It is anticipated, following further evaluation that these materials could be used to impact positively upon clinical outcomes such as psychosocial functioning, patient satisfaction and participation in shared decision-making.