Complex organisational factors influence multidisciplinary care for patients with hip fractures: a qualitative study of barriers and facilitators to service delivery.

BACKGROUND: Hip fractures are devastating injuries, with high health and social care costs. Despite national standards and guidelines, substantial variation persists in hospital delivery of hip fracture care and patient outcomes. This qualitative study aimed to identify organisational processes that can be targeted to reduce variation in service provision and improve patient care. METHODS: Interviews were conducted with 40 staff delivering hip fracture care in four UK hospitals. Twenty-three anonymised British Orthopaedic Association reports addressing under-performing hip fracture services were analysed. Following Thematic Analysis of both data sources, themes were transposed onto domains both along and across the hip fracture care pathway. RESULTS: Effective pre-operative care required early alert of patient admission and the availability of staff in emergency departments to undertake assessments, investigations and administer analgesia. Coordinated decision-making between medical and surgical teams regarding surgery was key, with strategies to ensure flexible but efficient trauma lists. Orthogeriatric services were central to effective service delivery, with collaborative working and supervision of junior doctors, specialist nurses and therapists. Information sharing via multidisciplinary meetings was facilitated by joined up information and technology systems. Service provision was improved by embedding hip fracture pathway documents in induction and training and ensuring their consistent use by the whole team. Hospital executive leadership was important in prioritising hip fracture care and advocating service improvement. Nominated specialty leads, who jointly owned the pathway and met regularly, actively steered services and regularly monitored performance, investigating lapses and consistently feeding back to the multidisciplinary team. CONCLUSION: Findings highlight the importance of representation from all teams and departments involved in the multidisciplinary care pathway, to deliver integrated hip fracture care. Complex, potentially modifiable, barriers and facilitators to care delivery were identified, informing recommendations to improve effective hip fracture care delivery, and assist hospital services when re-designing and implementing service improvements.

Development of a novel intervention to improve sleep and pain in patients undergoing total knee replacement.

BACKGROUND: Up to 20% of patients experience long-term pain and dissatisfaction after total knee replacement, with a negative impact on their quality of life. New approaches are needed to reduce the proportion of people to go on to experience chronic post-surgical pain. Sleep and pain are bidirectionally linked with poor sleep linked to greater pain. Interventions to improve sleep among people undergoing knee replacement offer a promising avenue. Health beliefs and barriers to engagement were explored using behaviour change theory. This study followed stages 1-4 of the Medical Research Council's guidance for complex intervention development to develop a novel intervention aimed at improving sleep in pre-operative knee replacement patients. METHODS: Pre-operative focus groups and post-operative telephone interviews were conducted with knee replacement patients. Before surgery, focus groups explored sleep experiences and views about existing sleep interventions (cognitive behavioural therapy for insomnia, exercise, relaxation, mindfulness, sleep hygiene) and barriers to engagement. After surgery, telephone interviews explored any changes in sleep and views about intervention appropriateness. Data were audio-recorded, transcribed, anonymised, and analysed using framework analysis. RESULTS: Overall, 23 patients took part, 17 patients attended pre-operative focus groups, seven took part in a post-operative telephone interview, and one took part in a focus group and interview. Key sleep issues identified were problems getting to sleep, frequent waking during the night, and problems getting back to sleep after night waking. The main reason for these issues was knee pain and discomfort and a busy mind. Participants felt that the sleep interventions were generally acceptable with no general preference for one intervention over the others. Views of delivery mode varied in relation to digital move and group or one-to-one approaches. CONCLUSION: Existing sleep interventions were found to be acceptable to knee replacement patients. Key barriers to engagement related to participants' health beliefs. Addressing beliefs about the relationship between sleep and pain and enhancing understanding of the bidirectional/cyclical relationship could benefit engagement and motivation. Individuals may also require support to break the fear and avoidance cycle of pain and coping. A future intervention should ensure that patients' preferences for sleep interventions and delivery mode can be accommodated in a real-world context.

Value, transparency, and inclusion: A values-based study of patient involvement in musculoskeletal research.

BACKGROUND: Patient and public involvement work (PPI) is essential to good research practice. Existing research indicates that PPI offers benefits to research design, conduct, communication, and implementation of findings. Understanding how PPI works and its value helps to provide information about best practice and highlight areas for further development. This study used a values-based approach to reporting PPI at a Research Unit focused on musculoskeletal conditions within a UK medical school. METHODS: The study was conducted between October 2019 and January 2020 using Gradinger's value system framework as a theoretical basis. The framework comprises three value systems each containing five clusters. All PPI members and researchers who had attended PPI groups were invited to participate. Participants completed a structured questionnaire based on the value system framework; PPI members also provided further information through telephone interviews. Data were deductively analysed using a framework approach with data mapped onto value systems. RESULTS: Twelve PPI members and 17 researchers took part. Views about PPI activity mapped onto all three value systems. PPI members felt empowered to provide their views, and that their opinions were valued by researchers. It was important to PPI members that they were able to 'give back' and to do something positive with their experiences. Researchers would have liked the groups to be more representative of the wider population, patients highlighted that groups could include more younger members. Researchers recognised the value of PPI, and the study highlighted areas where researchers members might benefit from further awareness. CONCLUSIONS: Three areas for development were identified: (i) facilitating researcher engagement in training about the value and importance of PPI in research; (ii) support for researchers to reflect on the role that PPI plays in transparency of healthcare research; (iii) work to further explore and address aspects of diversity and inclusion in PPI.

Optimising recruitment into trials using an internal pilot.

BACKGROUND: Recruitment to trials can be difficult. Despite careful planning and research that outlines ways to improve recruitment, many trials do not achieve their target on time and require extensions of funding or time. METHODS: We describe a trial in which an internal pilot with embedded qualitative research was used to improve recruitment processes and inform recruitment projections for the main trial. At the end of the pilot, it was clear that the sample size would not be met on time. Three steps were taken to optimise recruitment: (1) adjustments were made to the recruitment process using information from the qualitative work done in the pilot and advice from a patient and public involvement group, (2) additional recruiting sites were included based on site feasibility assessments and (3) a projection equation was used to estimate recruitment at each site and overall trial recruitment. RESULTS: Qualitative work during the pilot phase allowed us to develop strategies to optimise recruitment during the main trial, which were incorporated into patient information packs, the standard operating procedures and training sessions with recruiters. From our experience of feasibility assessments, we developed a checklist of recommended considerations for feasibility assessments. For recruitment projections, we developed a four-stage projection equation that estimates the number of participants recruited using a conversion rate of the number randomised divided by the number screened. CONCLUSIONS: This work provides recommendations for feasibility assessments and an easy-to-use projection tool, which can be applied to other trials to help ensure they reach the required sample size. TRIAL REGISTRATION: ISRCTN, ISRCTN92545361 . Registered on 6 September 2016.

An observational cohort study to produce and evaluate an improved tool to screen older women with back pain for osteoporotic vertebral fractures (Vfrac): study protocol.

The aim of this study is to produce an easy to use checklist for general practitioners to complete whenever a woman aged over 65 years with back pain seeks healthcare. This checklist will produce a binary output to determine if the patient should have a radiograph to diagnose vertebral fracture. PURPOSE: People with osteoporotic vertebral fractures are important to be identified as they are at relatively high risk of further fractures. Despite this, less than a third of people with osteoporotic vertebral fractures come to clinical attention due to various reasons including lack of clear triggers to identify who should have diagnostic spinal radiographs. This study aims to produce and evaluate a novel screening tool (Vfrac) for use in older women presenting with back pain in primary care based on clinical triggers and predictors identified previously. This tool will generate a binary output to determine if a radiograph is required. METHODS: The Vfrac study is a two-site, pragmatic, observational cohort study recruiting 1633 women aged over 65 years with self-reported back pain. Participants will be recruited from primary care in two sites. The Vfrac study will use data from two self-completed questionnaires, a simple physical examination, a lateral thoracic and lateral lumbar radiograph and information contained in medical records. RESULTS: The primary objective is to develop an easy-to-use clinical screening tool for identifying older women who are likely to have vertebral fractures. CONCLUSIONS: This article describes the protocol of the Vfrac study; ISRCTN16550671.

Correction to: Using self-reports of pain and other variables to distinguish between older women with back pain due to vertebral fractures and those with back pain due to degenerative changes.

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Informal caregiving in head and neck cancer: caregiving activities and psychological well-being.

The purpose of this study was to quantify the general cancer support activities that long-term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well-being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well-being was assessed by the Depression Anxiety Stress Scales-21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4. Mean time since diagnosis was 6.2 years. In the past month, 45% of carers did not spend any extra time per week helping their relative/friend with general caring activities such as cleaning the house; 31% spent 1-19 hr/week and 23% spent 20 or more hours/week doing so. Most carers were comfortable assisting their relative/friend, though more carers felt uncomfortable assisting with HNC-specific support tasks (31% uncomfortable helping with medication) compared with general support tasks (7% uncomfortable helping with appointments). Feeling uncomfortable with head and neck-specific care tasks was a significant predictor of experiencing depression and anxiety.

Systematic review of management of chronic pain after surgery.

BACKGROUND: Pain present for at least 3 months after a surgical procedure is considered chronic postsurgical pain (CPSP) and affects 10-50 per cent of patients. Interventions for CPSP may focus on the underlying condition that indicated surgery, the aetiology of new-onset pain or be multifactorial in recognition of the diverse causes of this pain. The aim of this systematic review was to identify RCTs of interventions for the management of CPSP, and synthesize data across treatment type to estimate their effectiveness and safety. METHODS: MEDLINE, Embase, PsycINFO, CINAHL and the Cochrane Library were searched from inception to March 2016. Trials of pain interventions received by patients at 3 months or more after surgery were included. Risk of bias was assessed using the Cochrane risk-of-bias tool. RESULTS: Some 66 trials with data from 3149 participants were included. Most trials included patients with chronic pain after spinal surgery (25 trials) or phantom limb pain (21 trials). Interventions were predominantly pharmacological, including antiepileptics, capsaicin, epidural steroid injections, local anaesthetic, neurotoxins, N-methyl-d-aspartate receptor antagonists and opioids. Other interventions included acupuncture, exercise, postamputation limb liner, spinal cord stimulation, further surgery, laser therapy, magnetic stimulation, mindfulness-based stress reduction, mirror therapy and sensory discrimination training. Opportunities for meta-analysis were limited by heterogeneity. For all interventions, there was insufficient evidence to draw conclusions on effectiveness. CONCLUSION: There is a need for more evidence about interventions for CPSP. High-quality trials of multimodal interventions matched to pain characteristics are needed to provide robust evidence to guide management of CPSP.

Central sensitization as a determinant of patients' benefit from total hip and knee replacement.

BACKGROUND: Discrepancies exist between osteoarthritic joint changes and pain severity before and after total hip (THR) and knee (TKR) replacement. This study investigated whether the interaction between pre-operative widespread hyperalgesia and severity of radiographic osteoarthritis (OA) was associated with pain severity before and after joint replacement. METHODS: Data were analysed from 232 patients receiving THR and 241 receiving TKR. Pain was assessed pre-operatively and at 12 months post-operatively using the WOMAC Pain Scale. Widespread hyperalgesia was assessed through forearm pressure pain thresholds (PPTs). Radiographic OA was evaluated using the Kellgren and Lawrence scheme. Statistical analysis was conducted using multilevel models, and adjusted for confounding variables. RESULTS: Pre-operative: In knee patients, there was weak evidence that the effect of PPTs on pain severity was greater in patients with more severe OA (Grade 3 OA: ß = 0.96 vs. Grade 4: ß = 4.03), indicating that in these patients higher PPTs (less widespread hyperalgesia) was associated with less severe pain. In hip patients, the effect of PPTs on pain did not differ with radiographic OA (Grade 3 OA: ß = 3.95 vs. Grade 4: ß = 3.67). Post-operative: There was weak evidence that knee patients with less severe OA who had greater widespread hyperalgesia benefitted less from surgery (Grade 3 OA: ß = 2.28; 95% CI -1.69 to 6.25). Conversely, there was weak evidence that hip patients with more severe OA who had greater widespread hyperalgesia benefitted more from surgery (Grade 4 OA: ß = -2.92; 95% CI -6.58 to 0.74). CONCLUSIONS: Widespread sensitization may be a determinant of how much patients benefit from joint replacement, but the effect varies by joint and severity of structural joint changes. SIGNIFICANCE: Pre-operative widespread hyperalgesia and radiographic osteoarthritis (OA) severity may influence how much patients benefit from joint replacement. Patients undergoing knee replacement with less severe OA and greater widespread hyperalgesia benefitted less from surgery than patients with less hyperalgesia. Patients undergoing hip replacement with more severe OA and greater widespread hyperalgesia benefitted more than patients with less hyperalgesia.

Selecting, assessing and interpreting measures of function for patients with severe hip pathology: The need for caution.

INTRODUCTION: It is not always possible to use a combination of patient-reported outcome measures (PROMs), performance tests and clinician-administrated measures to assess physical function prior to hip surgery. We hypothesised that there would be low correlations between these three types of measure and that they would be associated with different patients' characteristics. MATERIALS AND METHODS: We conducted a cross-sectional analysis of the preoperative information of 125 participants listed for hip replacement. The WOMAC-function subscale, Harris Hip Score (HHS) and walk, step and balance tests were assessed by questionnaire or during a clinic visit. Participant's socio-demographics and medical characteristics were also collected. Correlations between functional measures were investigated with correlation coefficients. Regression models were used to test the association between the patient's characteristics and each of the three types of functional measures. RESULTS: None of the correlations between the PROM, clinician-administrated measure and performance tests were very high (<0.90). Associations between patient's characteristics and functional scores varied by type of measure. Psychological status was associated with the PROM (P-value<0.0001) but not with the other measures. Age was associated with the performance test measures (P-value ranging from ≤0.01 to <0.0001) but not with the PROM. The clinician-administered measure was not associated with age or psychological status. DISCUSSION: Substantial discrepancies exist when assessing hip function using a PROM, functional test or a clinician-administered test. Moreover, these assessment methods are influenced differently by patient's characteristics. Clinicians should supplement their pre-surgery assessment of function with patient-reported measure to include the patient's perspective. LEVEL OF EVIDENCE: III, observational cross-sectional study.

Secondary prevention of fractures after hip fracture: a qualitative study of effective service delivery.

UNLABELLED: There is variation in how services to prevent secondary fractures after hip fracture are delivered and no consensus on best models of care. This study identifies healthcare professionals' views on effective care for the prevention of these fractures. It is hoped this will provide information on how to develop services. INTRODUCTION: Hip fracture patients are at high risk of subsequent osteoporotic fractures. Whilst fracture prevention services are recommended, there is variation in delivery and no consensus on best models of care. This study aims to identify healthcare professionals' views on effective care for prevention of secondary fracture after hip fracture. METHODS: Forty-three semi-structured interviews were undertaken with healthcare professionals involved in delivering fracture prevention across 11 hospitals in one English region. Interviews explored views on four components of care: (1) case finding, (2) osteoporosis assessment, (3) treatment initiation, and (4) monitoring and coordination. Interviews were audio-recorded, transcribed, anonymised and coded using NVivo software. RESULTS: Case finding: a number of approaches were discussed. Multiple methods ensured there was a 'backstop' if patients were overlooked. Osteoporosis assessment: there was no consensus on who should conduct this. The location of the dual energy X-ray absorptiometry (DXA) scanner influenced the likelihood of patients receiving a scan. Treatment initiation: it was felt this was best done in inpatients rather request initiation in the post-discharge/outpatients period. Monitoring (adherence): adherence was a major concern, and participants felt more monitoring could be conducted by secondary care. Coordination of care: participants advocated using dedicated coordinators and formal and informal methods of communication. A gap between primary and secondary care was identified and strategies suggested for addressing this. CONCLUSIONS: A number of ways of organising effective fracture prevention services after hip fracture were identified. It is hoped that this will help professionals identify gaps in care and provide information on how to develop services.

Using self-reports of pain and other variables to distinguish between older women with back pain due to vertebral fractures and those with back pain due to degenerative changes.

UNLABELLED: Women with back pain and vertebral fractures describe different pain experiences than women without vertebral fractures, particularly a shorter duration of back pain, crushing pain and pain that improves on lying down. This suggests a questionnaire could be developed to identify older women who may have osteoporotic vertebral fractures. INTRODUCTION: Approximately 12 % of postmenopausal women have vertebral fractures (VFs), but less than a third come to clinical attention. Distinguishing back pain likely to relate to VF from other types of back pain may ensure appropriate diagnostic radiographs, leading to treatment initiation. This study investigated whether characteristics of back pain in women with VF are different from those in women with no VFs. METHODS: A case control study was undertaken with women aged ≥60 years who had undergone thoracic spinal radiograph in the previous 3 months. Cases were defined as those with VFs identified using the algorithm-based qualitative (ABQ) method. Six hundred eighty-three potential participants were approached. Data were collected by self-completed questionnaire including the McGill Pain Questionnaire. Chi-squared tests assessed univariable associations; logistic regression identified independent predictors of VFs. Receiver operating characteristic (ROC) curves were used to evaluate the ability of the combined independent predictors to differentiate between women with and without VFs via area under the curve (AUC) statistics. RESULTS: One hundred ninety-seven women participated: 64 cases and 133 controls. Radiographs of controls were more likely to show moderate/severe degenerative change than cases (54.1 vs 29.7 %, P = 0.011). Independent predictors of VF were older age, history of previous fracture, shorter duration of back pain, pain described as crushing, pain improving on lying down and pain not spreading down the legs. AUC for combination of these factors was 0.85 (95 % CI 0.79 to 0.92). CONCLUSION: We present the first evidence that back pain experienced by women with osteoporotic VF is different to back pain related solely to degenerative change.

Assessment of physical function following total hip arthroplasty: Inertial sensor based gait analysis is supplementary to patient-reported outcome measures.

BACKGROUND: Functional outcome assessment after total hip arthroplasty often involves subjective patient-reported outcome measures whereas analysis of gait is more objective. The study's aims were to compare subjective and objective functional outcomes after total hip arthroplasty between patients with low and high self-reported levels of pre-operative physical function. METHODS: Patients undergoing total hip arthroplasty (n=36; m/f=18/18; mean age=63.9; SD=9.8 years; BMI=26.3; SD=3.5) were divided into a low and high function subgroup, and prospective measures of WOMAC (Western Ontario and McMaster Universities Osteoarthritis Index) function score and gait were compared at baseline and 3 and 12 months post-operatively. FINDINGS: WOMAC function scores significantly improved in both low and high function subgroups at 3 months post-operatively whereas gait parameters only improved in patients with a low pre-operative function. Between 3 and 12 months post-operatively, WOMAC function scores had not significantly further improved whereas several gait parameters significantly improved in the low function group. WOMAC function scores and gait parameters were only moderately correlated (Spearman's r=0.33-0.51). INTERPRETATION: In a cohort of patients undergoing total hip arthroplasty, pre-operative differences in mean WOMAC function scores and gait parameters between low and high function subgroups disappeared by 3 months post-operatively. Gait parameters only improved significantly during the first 3 post-operative months in patients with a low pre-operative function, highlighting the importance of investigating relative changes rather than the absolute changes and the need to consider patients with high and low functions separately.

Pathways Through Care for Long-Term Pain After Knee Replacement: A Qualitative Study With Healthcare Professionals.

BACKGROUND: Chronic pain after total knee replacement is experienced by around 20% of patients in the UK. Ensuring that services are designed to best meet the needs of patients requires a foundation of empirical work. The present study sought to describe healthcare professionals' experiences and views on the assessment and care of patients with chronic pain after total knee replacement. METHODS: We undertook a qualitative focus group study with healthcare professionals at a large acute NHS hospital trust, all of whom came into contact with patients experiencing chronic pain after total knee replacement. Snowball sampling was used to recruit participants to four focus groups. Transcripts of the audio-recorded groups were analysed thematically. RESULTS: Eighteen healthcare professionals from a range of disciplines took part. Participants found it difficult to conceptualize chronic pain; its character varied between patients, and its origins and progress were often ambiguous. In the first of two superordinate themes, participants recognized chronic pain as a possible outcome of total knee replacement, but felt that patients may be unprepared for this. In the second superordinate theme, apparent complexities in assessing and managing patients with chronic pain after total knee replacement and a lack of explicit access points meant that healthcare professionals often saw no clear way to help patients. Participants agreed that a multidisciplinary approach that adapts to individual patient context was an ideal approach. CONCLUSION: The present study illustrated potential obstacles to 'best practice' in the management of chronic pain after total knee replacement, identified through research with healthcare professionals. There is a need to improve access to services and develop well-defined and flexible care pathways that can accommodate complexities inherent to chronic pain, such as an unpredictable course. Copyright © 2015 John Wiley & Sons, Ltd.

Assessment of chronic post-surgical pain after knee replacement: development of a core outcome set.

BACKGROUND: Approximately 20% of patients experience chronic post-surgical pain (CPSP) after total knee replacement (TKR). There is scope to improve assessment of CPSP after TKR, and this study aimed to develop a core outcome set. METHODS: Eighty patients and 43 clinicians were recruited into a three-round modified Delphi study. In Round 1, participants were presented with 56 pain features identified from a systematic review, structured interviews with patients and focus groups with clinicians. Participants assigned importance ratings, using a 1-9 scale, to individual pain features; those features rated as most important were retained in subsequent rounds. Consensus that a pain feature should be included in the core outcome set was defined as the feature having a rating of 7-9 by ≥70% of both panels (patients and clinicians) and 1-3 by ≤15% of both panels or rated as 7-9 by ≥90% of one panel. RESULTS: Round 1 was completed by 71 patients and 39 clinicians, and Round 3 by 62 patients and 33 clinicians. The final consensus was that 33 pain features were important. These were grouped into an 8-item core outcome set comprising: pain intensity, pain interference with daily living, pain and physical functioning, temporal aspects of pain, pain description, emotional aspects of pain, use of pain medication, and improvement and satisfaction with pain relief. CONCLUSIONS: This core outcome set serves to guide assessment of CPSP after TKR. Consistency in assessment can promote standardized reporting and facilitate comparability between studies that address a common but understudied type of CPSP.

Does measuring the range of motion of the hip and knee add to the assessment of disability in people undergoing joint replacement?

BACKGROUND AND HYPOTHESIS: Range of motion (ROM) is a core component of some commonly used measures of disability, such as the American Knee Society Score and Harris Hip Score. However, the relationship between ROM and function is contested. The aim of this cross-sectional analysis was to investigate the relationship between pre-operative range of motion (ROM) and disability in patients undergoing hip and knee joint replacement. PATIENTS AND METHODS: Two hundred and forty-nine patients recorded on NHS records as listed for joint replacement completed a range of measures prior to surgery. Pre-operative hip or knee ROM was measured by a trained research nurse using a hand-held goniometer. Joint pain severity was assessed using the WOMAC Pain Scale. Self-report activity limitations and participation restrictions were measured with the WOMAC Function Scale and the Aberdeen Impairment, Activity Limitation and Participation Restriction Measure. Observed activity limitations were assessed through three performance tests: 20-metre timed walk, sit-to-stand-to-sit, and 20-cm step tests. RESULTS: Pre-operative hip and knee ROM correlated weakly with self-report activity limitations (0.11 to 0.43), observed activity limitations (0.09 to 0.39) and self-report participation restrictions (-0.32 to 0.06). In comparison to ROM, correlations between joint pain and self-report activity limitations and participation restrictions were consistently moderate-high (-0.53 to 0.80). However, patients with restricted knee joint flexion (<110°) had significantly worse pain, activity limitations and participation restrictions than patients with non-restricted flexion (≥110°). Patients with restricted hip joint flexion (<95°) had greater activity limitations on some measures than patients with non-restricted flexion (>95°). DISCUSSION: This study suggests that modest restrictions of ROM are of little relevance to functional ability but that a certain amount of flexion is required for adequate function. We recommend that ROM is not the best means of assessing patients' disability prior to surgery. LEVEL OF EVIDENCE: III - cohort study.

The assessment of persistent pain after joint replacement.

This study used 'think aloud' to explore issues around using a standardised questionnaire to assess persistent pain after joint replacement. Twenty participants with moderate-extreme persistent pain in their replaced hip or knee completed the Chronic Pain Grade (CPG) while 'thinking aloud'. The interviews were audio-recorded, transcribed and analysed using thematic analysis. Completion of the CPG by patients was influenced by four issues: challenges with the question wording or response options on the CPG items; the fluctuating nature of pain and functional limitations; the need to account for co-morbidities and pain elsewhere; and adjustment to pain. These issues reflect those that have arisen previously in patients with musculoskeletal pain, and need to be considered when assessing persistent joint pain, both before and after joint replacement.

Assessment of the impact of flares in ankylosing spondylitis disease activity using the Flare Illustration.

OBJECTIVES: Many AS patients report periods of perceived higher disease activity (flares). This pilot study aims to document disease activity patterns reported by AS patients and examine associations with disease-specific health status measures. METHODS: Consecutive AS patients (n = 114) were asked whether they experience flares, and if they experience symptoms of AS between flares. They were shown the Flare Illustration of disease patterns over time and asked to select the pattern that best described their disease (i) since symptom onset and (ii) in the past year. Associations between reported disease pattern and disease activity (Bath AS Disease Activity Index, BASDAI); functional impairment (Bath AS Functional Index, BASFI); AS Quality of Life (ASQoL); Back Pain (Nocturnal and Overall) and demographic features were assessed in a subsample (n = 83) (statistical significance defined at P 70% of patients) and patterns with constant symptoms since onset (vs intermittent symptoms) were associated with worse health status (ASQoL: P = 0.007; BASDAI: P = 0.029; BASFI: P = 0.013, overall back pain: P = 0.025). CONCLUSIONS: Almost all AS patients report flares in disease activity: 70-80% report constant symptoms with single/repeated flares, while 20-30% report flares with no intermittent symptoms. The former is associated with a significantly poorer health status. These findings will be validated in a prospective study.

Understanding the pain experience in hip and knee osteoarthritis--an OARSI/OMERACT initiative.

OBJECTIVE: To examine the pain experience of people with hip or knee osteoarthritis (OA), particularly changes over time and most distressing features. METHOD: Focus groups in individuals aged 40+ years with painful hip or knee OA obtained detailed descriptions of OA pain from early to late disease. A modified Patient Generated Index (PGI) was used to assess the features of OA pain that participants found most distressing. Content analysis was performed to examine response patterns; descriptive statistics were used to summarize PGI responses. RESULTS: Mean age of the 143 participants (52 hip OA; 91 knee OA) was 69.5 years (47-92 years); 60.8% were female and 93.7% Caucasian. Participants described two distinct types of pain - a dull, aching pain, which became more constant over time, punctuated increasingly with short episodes of a more intense, often unpredictable, emotionally draining pain. The latter, but not the former, resulted in significant avoidance of social and recreational activities. From PGI responses, distressing pain features were: the pain itself (particularly intense and unpredictable pain) and the pain's impact on mobility, mood and sleep. CONCLUSIONS: Two distinct pain types were identified. Intermittent intense pain, particularly when unpredictable, had the greatest impact on quality of life.