How to measure patient experience and outcomes to demonstrate quality in care.

Patients' views on their care are an essential component in assessing its quality. A range of quality measures can be used, including patient reported experience measures and patient reported outcome measures. This one part unit examines how to use questionnaires and other available methods to measure patients' experiences a well as outcomes of the care they have received.

Clinical and research databases in healthcare research.

How reliable are databases as a source of potential participants for research? Jill Firth and Naomi Reay suggest that caution is required.

Records management guidance and its implications for research.

The UK Department of Health's code of practice for managing records has important implications for nurse researchers. Naomi Reay and Jill Firth consider the steps researchers need to take to comply with the code.

An exploration of the NHS end of life care programme and its potential use for patients with end-stage systemic sclerosis.

Systemic sclerosis is an autoimmune connective tissue disorder with the highest case-specific mortality of the rheumatic disorders (Denton and Black, 1999). Despite recent developments in the treatment of systemic sclerosis, patients are still dying from its complications. Therefore the palliative care needs of patients with end-stage systemic sclerosis must be considered. There is little research into palliative care for patients with systemic sclerosis, but clinical experience suggests the level of care has been dependent upon local resources and the experience of the team responsible for the patient's care. The need for equitable, high-quality palliative care for patients with end-stage systemic sclerosis may be met by current developments in end of life care within the UK. The present paper outlines the NHS end of life care programme (DoH, 2003; NICE, 2003) and uses a case study approach to illustrate its application to palliative care in end-stage systemic sclerosis.

Development of a foot impact scale for rheumatoid arthritis.

OBJECTIVE: To develop a new foot impact scale to assess foot status in rheumatoid arthritis (RA) using established qualitative methodology and the latest item response techniques (Rasch analysis). METHODS: Foot problems in RA were explored by conducting qualitative interviews that were then used to generate items for a new foot impact scale. Further validation was undertaken following postal surveys and Rasch analysis. RESULTS: Analysis of the first postal survey (n = 192 responses) produced a 63-item binary response, 4-subscale instrument. The 4 subscales covered the domains impairment, activities, participation, and footwear. Following test-retest postal surveys and additional analysis, the instrument was reduced to a 2 subscale, 51-item questionnaire covering the domains of impairments/shoes and activities/participation. Initial results of these subscales indicate good psychometric properties, external validity, and test-retest reliability. CONCLUSION: A foot impact scale to assess the impact of RA and to measure the effect of interventions has been developed. The 2 scales comprising the instrument demonstrate good psychometric properties.

The geometric architecture of the subtalar and midtarsal joints in rheumatoid arthritis based on magnetic resonance imaging.

OBJECTIVE: To compare in vivo the 3-dimensional (3-D) geometric architecture of the subtalar and midtarsal joints in normal and rheumatoid arthritic (RA) feet, using magnetic resonance imaging (MRI) analysis. METHODS: MRI was performed on 23 patients with RA, all of whom had disease activity in the subtalar and/or midtarsal joints. Image processing techniques were used to create 3-D reconstructions of the calcaneus (C), cuboid (c), navicular (N), and talus (T) bones. Twenty-four standard architectural parameters were measured from the reconstructions and were compared with data from 10 normal subjects. These parameters defined both 3-D distance and angular relationships among the 4 bones studied. Pattern classification techniques were used to establish a geometric architecture foot profile for the RA patients. The degree of individual patient fit to the new RA foot profile and to profiles for normal, pes planus, and pes cavus foot types was derived. Logistic regression was used to examine the relationship of foot architecture to inflammatory disease characteristics and physical examination variables. RESULTS: Subtalar or midtarsal pain was reported by all 23 patients, and 22 of the 23 patients presented with >/=1 clinical feature of pes planovalgus deformity. In 21 patients, ultrasonography revealed synovitis at >/=1 tarsal joint or surrounding tendon. In the RA group, the normalized distances between the geometric centroids were significantly closer for bone pairs Cc and cT and significantly distracted for bone pair CN compared with the distances in normal subjects. In RA patients (versus normal subjects), the angles subtended at the bone centroids were significantly decreased in 3 bone groups (CNc, TCN, and TNc) and significantly increased in 3 bone groups (CcN, CcT, NTc). The angles formed between the major principal axes of bone pairs CT and cT were significantly increased in RA patients compared with those in normal subjects. Pattern classification defined 11 RA feet as having normal structure and 12 as having abnormal structure. However, the abnormal feet did not fit consistently with structures defined for RA, pes planus, or pes cavus foot types. Logistic regression demonstrated that subtalar joint synovitis was the only predictive factor for abnormal subtalar and midtarsal architecture (odds ratio 19.2, 95% confidence interval 1.77-200.0). CONCLUSION: This unique 3-D MRI-based technique successfully quantified the effects of RA on the geometric architecture of the foot and the patient-specific nature of these changes. This technique can be used to provide logical therapy for correction.