Anita Williams

Patient perspective of systemic lupus erythematosus in relation to health-related quality of life concepts: a qualitative study

We sought to understand the patients’ ‘lived experiences of systemic lupus erythematosus (SLE)’ by exploring, describing and clarifying the patients’ perspective of how they felt about having SLE and how the disease impacted on their lives, both positively and/or negatively. An interpretative phenomenological approach was employed. Semi-structured interviews were undertaken with 30 females with SLE across a wide range of age (21 to 75 years), disease characteristics, disease duration (1 to 28 years) and ethnicity (Whites, South Asians). Eleven themes emerged as important to the patients: prognosis and course of disease; body image; effects of treatment; emotional difficulties; inability to plan due to disease unpredictability; fatigue; pain; career prospects and loss of income; memory loss/concentration; reliance on others to assist with everyday tasks; and pregnancy issues. Most patients reported a negative impact of SLE on their lives although a few patients found positive aspects to having SLE. The findings of this study identified themes important to patients with SLE and these themes will inform clinicians on the patients’ perspective of having SLE.

‘My feet – visible, but ignored . . .’ A qualitative study of foot care for people with rheumatoid arthritis

Objective: To explore patients’ experiences of foot problems associated with rheumatoid arthritis, from onset of symptoms to being provided with foot health interventions. Design: A qualitative design was used with an interpretive phenomenological approach to the data collection and analysis. Setting: University of Salford, School of Health Science. Subjects: Sixteen female and six male adults with rheumatoid arthritis-related foot problems and experience of receiving foot health interventions. Method: Data were collected through digital recordings of three focus groups which were conducted by an experienced researcher. An observer made field notes. Transcribed data were analysed using a thematic framework. Data were verified with randomly selected participants and agreement achieved with the participants, researcher and observer. Results: The results were organized into five themes: the significance of foot symptoms in relation to diagnosis of rheumatoid arthritis; knowledge of and explanation about foot symptoms; accessing foot health interventions; the effectiveness of foot health interventions; and improvements to foot health interventions. Despite foot problems being of concern to the participants, they were often ignored by practitioners from before diagnosis through to foot management. Conclusions: This study has highlighted a polarity between what these participants need in relation to their foot symptoms and the management of them. That foot problems are often ignored is of concern at multiple levels. These range from the implications of ignoring foot symptoms that may aid diagnosis of rheumatoid arthritis, to ignoring the need for effective foot health interventions.

Shoes in the cupboard: The fate of prescribed footwear?

Studies show that patient dissatisfaction with prescribed footwear results in low usage and that the cause is the system that provides it. The aim of this study was to compare referrer and patient perceptions of a multidisciplinary footwear clinic (MDFC) and a traditional surgical appliance clinic (SAC). Referring consultants completed a questionnaire for every referral (28 referred to the MDFC and 27 to the SAC) during a six-month period. Structured interviews were designed to gather the data. The results showed that referrers to both groups indicated that they lacked the time and knowledge to give advice about retail footwear. The entire MDFC group but only 18 (66.6%) of patients in the SAC group had the opportunity for discussion about footwear before the prescription took place. Some 17 (62.9%) in the SAC group reported problems with the footwear but only 11 (40.7%) of this group were informed what to do if problems occurred. Both groups demonstrated an association between the patients attitude, their perception of improvement in their feet and overall satisfaction. These factors seemed to have an impact on the usage of the prescription footwear with 13 (48.1%) of the SAC group using other footwear compared with 2 (7.2%) in the MDFC group. This study adds to the suggestions made in other studies that there is a need to review the SAC system and identifies key areas that influence patient satisfaction.

The rheumatoid foot: a systematic literature review of patient-reported outcome measures

BackgroundThe foot is often the first area of the body to be systematically affected by rheumatoid arthritis. The multidimensional consequences of foot problems for patients can be subjectively evaluated using patient-reported outcome measures (PROMs). However, there is currently no systematic review which has focused specifically upon the PROMs available for the foot with rheumatoid arthritis. The aim of this systematic review was to appraise the foot-specific PROMs available for the assessment and/or evaluation of the foot affected with rheumatoid arthritis.MethodsA systematic search of databases was conducted according to pre-defined inclusion/exclusion criteria. PROMs identified were reviewed in terms of: conceptual bases, quality of construction, measurement aims and evidence to support their measurement properties.ResultsA total of 11 PROMs were identified and 5 papers that provided evidence for the measurement properties of some of the PROMs. Only one of the PROMs was found to be RA disease-specific. The quality of construction, pretesting and presence of evidence for their measurement properties was found to be highly variable. Conceptual bases of many of the PROMs was either restricted or based on reductionist biomedical models. All of the PROMs were found to consist of fixed scales.ConclusionsThere is a need to develop an RA-disease and foot-specific PROM with a greater emphasis on a biopsychosocial conceptual basis, cognitive pre-testing methods, patient preference-based qualities and evidence to support the full complement of measurement properties.

Inter-assessor reliability of practice based biomechanical assessment of the foot and ankle.

BackgroundThere is no consensus on which protocols should be used to assess foot and lower limb biomechanics in clinical practice. The reliability of many assessments has been questioned by previous research. The aim of this investigation was to (i) identify (through consensus) what biomechanical examinations are used in clinical practice and (ii) evaluate the inter-assessor reliability of some of these examinations.MethodsPart1: Using a modified Delphi technique 12 podiatrists derived consensus on the biomechanical examinations used in clinical practice. Part 2: Eleven podiatrists assessed 6 participants using a subset of the assessment protocol derived in Part 1. Examinations were compared between assessors.ResultsClinicians choose to estimate rather than quantitatively measure foot position and motion. Poor inter-assessor reliability was recorded for all examinations. Intra-class correlation coefficient values (ICC) for relaxed calcaneal stance position were less than 0.23 and were less than 0.14 for neutral calcaneal stance position. For the examination of ankle joint dorsiflexion, ICC values suggest moderate reliability (less than 0.61). The results of a random effects ANOVA highlight that participant (up to 5.7°), assessor (up to 5.8°) and random (up to 5.7°) error all contribute to the total error (up to 9.5° for relaxed calcaneal stance position, up to 10.7° for the examination of ankle joint dorsiflexion). Kappa Fleiss values for categorisation of first ray position and mobility were less than 0.05 and for limb length assessment less than 0.02, indicating slight agreement.ConclusionStatic biomechanical assessment of the foot, leg and lower limb is an important protocol in clinical practice, but the key examinations used to make inferences about dynamic foot function and to determine orthotic prescription are unreliable.

‘Focus on feet’ – the effects of systemic lupus erythematosus: a narrative review of the literature

Background The manifestations of systemic lupus erythematosus (SLE) vary between individuals, from the severe and life-threatening renal and central nervous system involvement, to the involvement of skin, musculoskeletal and vascular system, and the complications of infection influencing the quality of life. However, as specific manifestations affecting the lower limb are perceived as receiving little focus, the purpose of this narrative literature review is to identify the specific factors associated with SLE that may have implications for lower limb and foot morbidity. Method A structured search of databases was conducted. The inclusion was restricted to publications in the English language, those that specifically investigate the feet as affected with SLE. No restriction on year of publication was imposed to reduce publication bias and to capture as many publication in relation to feet. Results Eleven papers fulfilled the inclusion criteria. There were seven additional papers that made observations related to the articular or vascular complications of the feet. This narrative review provides some information on how SLE affects the lower limb and foot in relation to the musculoskeletal and vascular systems. However, there is a lack of literature that specifically focuses on all the manifestations of SLE and the complications associated with its management. Discussion There are indications that SLE affects lower limb and foot morbidity but the scale of these problems is unclear and this is partly because of the absence of research and the lack of a ‘gold standard’ framework for the assessment of the lower limb and foot. In addition to clinical foot health assessment, ultrasonography may be a useful alternative to plain film radiography or magnetic resonance imaging (MRI) in capturing the extent of articular and extra-articular manifestations. Further, the Ankle Brachial Pressure Index (ABPI) may be useful in identifying those with atherosclerosis and ischaemia. Conclusion There are indications that SLE affects lower limb and foot morbidity but the scale of these problems and effective management of them is unclear. Therefore, further research is warranted in order to better understand the impact of SLE on the foot and lower limb and its impact on quality of life.

Guidelines for the management of people with foot health problems related to rheumatoid arthritis: a survey of their use in podiatry practice

BackgroundIn the last decade there has been a significant expansion in the body of knowledge on the effects of rheumatoid arthritis (RA) on the foot and the management of these problems. Aligned with this has been the development of specialist clinical roles for podiatrists. However, despite being recommended by national guidelines, specialist podiatrists are scarce. In order to inform non-specialist podiatrists of the appropriate interventions for these foot problems, management guidelines have been developed and disseminated by a group of specialist podiatrists. The aim of this survey was to investigate the use of these guidelines in clinical practice.MethodFollowing ethical approval an online questionnaire survey was carried out. The questions were formulated from a focus group and comprised fixed response and open response questions. The survey underwent cognitive testing with two podiatrists before being finalised. An inductive approach using thematic analysis was used with the qualitative data.Results245 questionnaires were completed (128–non-specialist working in the private sector, 101 non–specialists working in the NHS and 16 specialist podiatrists). Overall, 97% of the non-specialists (n = 222) had not heard of the guidelines. The non-specialists identified other influences on their management of people with RA, such as their undergraduate training and professional body branch meetings. Three main themes emerged from the qualitative data: (i) the benefits of the foot health management guidelines, (ii) the barriers to the use of guidelines generally and (iii) the features of useable clinical guidelines.ConclusionsThis study has revealed some crucial information about podiatrists’ level of engagement with the foot health management guidelines and the use of guidelines in general. Specifically, the non-specialist podiatrists were less likely to use the foot health management guidelines than the specialist podiatrists. The positive aspects were that for the specialist practitioners, the guidelines helped them to identify their professional development needs and for the few non-specialists that did use them, they enabled appropriate referral to the rheumatology team for foot health management. The barriers to their use included a lack of understanding of the risk associated with managing people with RA and that guidelines can be too long and detailed for use in clinical practice. Suggestions are made for improving the implementation of foot health guidelines.

Foot health education for people with rheumatoid arthritis - some patient perspectives.

BackgroundPatient education is an important component of foot health management for people with rheumatoid arthritis (RA). The content and strategies for delivery require investigation in relation to the patients’ needs. This study explores patients’ experiences of foot health education, to inform how the patients’ needs could be identified in clinical practice and inform effective education delivery.MethodA focus group was used to collect data. The dialogue was recorded digitally, transcribed verbatim and analysed using a structured thematic approach. Member checking and peer review added to credibility of the data.Six themes emerged; (i) content and purpose of patient education – what it should be, (ii) content of patient education – what it should not be, (iii) timing of information on foot health, (iv) method of delivery, (v) ability to engage with foot health education and (vi) the patient/practitioner relationship.ConclusionsThis study identified aspects of patient education considered important by this group of patients in relation to content, timing and delivery, forming the basis for further research on clinical and patient focussed outcomes of patient education.Identifying health education needs and provision of supportive verbal and written information can foster an effective therapeutic relationship, supporting effective foot health education for people with RA.

Therapeutic Foot Health Education for Patients with Rheumatoid Arthritis: A Narrative Review

PURPOSE Foot health interventions such as foot orthoses for people with rheumatoid arthritis (RA) reduce pain, improve function and improve overall quality of life. Additionally, patient education (PE) is considered essential in achieving good outcomes with interventions such as foot orthoses, footwear and self-care. The aim of this literature review was to identify evidence in relation to the content, use and delivery of PE in the management of RA foot problems. METHODS An electronic search of the following databases was performed: PubMed, CINAHL, AMED, Medline and the Cochrane Library, between March 2000 and March 2010. In order to be included, studies had to be published in English, involve adults (>18 years) with RA, and assist in answering the research question. No publications regarding PE for the management of foot health-related problems in RA were found. However, other key terms emerged that embraced PE for people with RA and informed a further search. Thirty-two papers met the inclusion criteria and were reviewed with regard to the subject area, content of the paper, methodological issues and their key findings. RESULTS The present review provides evidence for the effectiveness of PE for people with RA delivered via a staged approach, with the content and timing of education provision being driven by the needs of the patient. CONCLUSIONS The effect of PE delivered from a podiatric context needs to be explored, and the nature and requirements of PE for individuals with RA-related foot problems from a patient and practitioner perspective requires investigation. Alternative and innovative ways of providing PE and, potentially, self-management need to be investigated and defined.

A survey of people with foot problems related to rheumatoid arthritis and their educational needs

BackgroundUp to 50% of people with rheumatoid arthritis (RA) have foot symptoms at diagnosis, hence early foot health intervention is recommended and this should include patient education. This study identifies, for the first time, the foot health education (FHE) needs of people with RA.MethodsAn online survey of people with RA (n = 543) captured quantitative data in relation to the aims, methods of delivery, content, timing and accessibility of FHE.ResultsThe majority concurred about the aims of FHE. Verbal delivery and websites were the most common methods. Written and verbal FHE were perceived to be the most effective methods. The point of diagnosis was the preferred time to receive it. Lack of access to FHE included minimal focus on foot health during consultations by both health practitioners and patients with RA. Participant gender, age, disease duration and living situation had a statistically significant influence on the results.ConclusionFoot health education is rarely considered within the medical consultation. There is a lack of patient and/or health professional awareness of this need with a detrimental impact on foot health. Patients require health professionals to identify their foot education health needs. Tailored foot health education should begin at initial diagnosis.