Health professional views on the assessment and management of foot problems in people with psoriatic arthritis in Australia and New Zealand: a qualitative investigation.

BACKGROUND: Active foot disease persists in a high proportion of people with psoriatic arthritis despite the availability of pharmacological and non-pharmacological interventions to modify the course of the disease. Limited information exists on the provision of health care for foot disease in psoriatic arthritis. The objective of this study was to explore the views of health professionals on the assessment and management of people with psoriatic arthritis-related foot involvement. METHODS: Convenience sampling was used to recruit health professionals working in rheumatology outpatient clinics in Sydney, Australia and Auckland, New Zealand. Three focus groups were undertaken to explore the views and experiences of health professionals on the assessment and management of foot problems in people with psoriatic arthritis. All interviews were audio-recorded and transcribed verbatim. Qualitative data was analysed using a constant comparative analytic approach to identify themes. RESULTS: A total of seventeen health professionals participated including rheumatologists, podiatrists and a physiotherapist. Key themes derived from the focus groups suggest that health professionals perceived that people with psoriatic arthritis-related foot problems experience suboptimal management from symptom onset, to diagnosis and treatment. Frustration was expressed throughout discussions relating to lack of appropriate training and expertise required for the specialised management of foot problems typically encountered with psoriatic arthritis and poor access for patients to specialist podiatry services. CONCLUSIONS: This study provides new insight into the perspectives of health professionals on the management of foot problems related to psoriatic arthritis. Deficiencies in the diagnosis, assessment and treatment of foot problems were revealed. To meet the foot health needs of people with psoriatic arthritis, reducing diagnostic delay, improving knowledge and awareness about the disease among people with psoriatic arthritis and health professionals, and increasing specialist podiatry service provision may be required.

Consensus-based statements for assessing clinical competency in podiatry-related work integrated learning.

BACKGROUND: The training of undergraduate and graduate-entry podiatry students in Australia and New Zealand includes practical sessions in a simulated and real-life clinical setting and Work Integrated Learning (WIL) comprising professional clinical placements. Student performance during WIL is evaluated by their Clinical Educators using clinical competency tools. Having a standardised and validated clinical assessment tool for WIL in podiatry would facilitate consistency in assessment, promote standardisation between programs, and ensure that all podiatry students are assessed against a set of criteria over the course of their clinical programs to the point of threshold clinical competency. Therefore, the aim of this study was to develop a series of consensus-based statements via Delphi technique as the first step towards developing guidelines to direct the assessment of podiatry students during WIL. METHODS: This study used a three-round modified Delphi consensus method. A panel of 25 stakeholders was sought. Specifically, representation from each of the universities in Australia and New Zealand who provide entry level programs, Clinical Educators, podiatry student representatives, new podiatry graduates and consumers (podiatrists hiring new graduates). The survey for Round 1 aimed for consensus and consisted of five open-ended questions. Questions one to three asked respondents to nominate what they considered were the important elements that needed to be assessed for podiatry students undertaking WIL for: Clinical performance/skills, Communication and Professional behaviour, Question 4 asked respondents to identify further/other elements of importance, whilst Question 5 asked a) how these elements should be evaluated and b) how should overall competency and ability to progress within the program be determined. Round 2 and 3 aimed to gather agreement and the questions were based on the responses from previous rounds. RESULTS: Twenty-five participants agreed to participate, 17 females (68%) and eight males (32%). The panel consisted of 10 podiatry educators (40%), nine Clinical Educators (36%), two student representatives (8%), two new podiatry graduates (8%) and two consumers (8%). From the 25 recruited participants, 21 responded to Round one, 18 to Round two and 17 in Round three. At the conclusion of the Delphi survey, 55 statements had reached consensus or agreement. CONCLUSIONS: This Delphi study is the first of its kind for the podiatry profession to develop consensus-based statements regarding the assessment of WIL. Fifty-five statements pertinent to the assessment of WIL were identified. This is an important first step toward the development of a consistent WIL assessment tool which may be applied across entry-level podiatry programs across Australia and New Zealand.

Development of a national survey on foot involvement among people with psoriatic arthritis in Australia using a best practice approach: a survey development protocol.

BACKGROUND: Limited research to date has defined the nature and extent of foot involvement in a psoriatic arthritis-specific population in Australia and the scale of the problem remains unclear. Survey research provides the ideal opportunity to sample a large population over a wide geographical area. Although quality criteria for survey research have been developed, research shows that adherence is low and that survey studies are poorly reported in peer-reviewed survey articles, which limits the ability to inform future survey design. The objective of this paper was to develop a national survey about foot involvement in people with psoriatic arthritis using a best practice approach. This is a methods paper for the development of survey research. METHODS: A systematic, multi-stage process of survey development was undertaken, which comprised 3 phases: 1) the generation of the conceptual framework and survey content; 2) the development of the survey and pre-testing and 3) development of the survey dissemination strategy. A survey best practice approach was adopted using iterative pre-testing techniques, which included; cognitive debriefing, cultural sensitivity review, survey design expert validation, subject expert validation and pilot testing. Targeted postal and online survey dissemination strategies were developed a priori to optimise the response rates anticipated. RESULTS: A 59-item survey with 8 sections was developed. Findings demonstrated a high survey response (n = 649), high data completeness (83% of respondents reached the end of the survey) and low rates of missing data (below 5% for 95% of respondents). Extensive survey pre-testing among the target population, health professionals and experts improved the overall quality, content validity, functioning and representativeness of the survey instrument, which optimised potential response rates. Clear audit trails that mapped the analytical process at each stage substantiated the rigour of the survey development methods. Robust strategies for sampling, survey dissemination and community engagement were deemed to have made a powerful contribution to response rates and the scale of information collected. CONCLUSIONS: Robust patient-centred methods in survey design were used to create a novel, high-quality survey to comprehensively evaluate psoriatic arthritis-related foot involvement. Transparent and precise description of the survey design and dissemination methods provides useful information to other researchers embarking on survey design in healthcare.

Linking the patient experience of foot involvement related to psoriatic arthritis to the International Classification of Functioning, Disability and Health.

OBJECTIVE: The aim was to categorize the patient experience of PsA-related foot involvement by linking it to the International Classification of Functioning, Disability and Health (ICF) framework. METHODS: Concepts, obtained from a previous qualitative investigation of people with PsA and health professionals into their perspective of PsA-related foot involvement, were linked to the full version of the ICF classification. Concepts were linked to the most appropriate ICF category using established linking rules, which enable a systematic and standardized linking process. All concepts were linked independently to the ICF by two investigators, followed by a third investigator for adjudication. The professional backgrounds of the investigators included occupational therapy and podiatry. RESULTS: More than 100 distinct ICF categories were linked to the interview concepts. The most represented ICF category was body functions (35%), followed by environmental factors (31%), activities and participation (19%) and body structure (15%). Concepts that could not be linked to the ICF were related to coping, aspects of time and knowledge. Health professionals identified a greater proportion of body functions and fewer activity and participation categories compared with patients, indicating a possible mismatch of key concerns. Interdisciplinary group analysis demonstrated merit. CONCLUSION: A list of ICF categories was generated, defining aspects of functioning important and relevant to the impact of PsA-related foot involvement. Despite the localized anatomical focus of this study, the effect of foot problems in PsA was linked to all components of the ICF, confirming the profound impact on functioning and daily life.

Linking the effect of psoriatic arthritis-related foot involvement to the Leeds Foot Impact Scale using the International Classification for Functioning, Disability and Health: a study to assess content validity.

BACKGROUND: Previous research to describe the impact of foot involvement in psoriatic arthritis has used the Leeds Foot Impact Scale in Rheumatoid Arthritis (LFIS-RA) in the current absence of any psoriatic arthritis foot-specific tools. However, the LFIS-RA is a rheumatoid arthritis disease-specific outcome measure and its content validity for evaluating the experiences of people with psoriatic arthritis-related foot involvement is unknown. The study objective was to determine the content validity of the LFIS-RA for assessing people with psoriatic arthritis, using the International Classification of Functioning, Disability and Health (ICF) as the frame of reference. METHOD: Concepts within each item of the LFIS-RA were linked to the best-matched ICF categories using established linking rules, which enable a systematic and standardised linking process. All concepts were independently linked to the ICF by 2 investigators with different professional backgrounds, which included occupational therapy and podiatry. The list of ICF categories derived from previous research that pertained to the foot in psoriatic arthritis was then compared with the ICF categories linked to the LFIS-RA. The comparison was undertaken in order to determine the extent to which concepts important and relevant to people with psoriatic arthritis-related foot involvement were addressed. RESULTS: Thirty-five distinct ICF categories were linked to the LFIS-RA, which related to body functions (44%), activities and participation (35%), environmental factors (16%) and body structure (5%). In comparison with the ICF categories derived from concepts of the foot in psoriatic arthritis previously defined, the LFIS-RA provided coverage of key constructs including pain, functioning, daily activities, footwear restrictions and psychological impact. Other concepts of importance in psoriatic arthritis such as skin and toenail involvement, self-management and paid employment were not addressed in the LFIS-RA. CONCLUSION: Content validity of the LFIS-RA to determine the impact of foot functional impairments and disability in people with psoriatic arthritis was not supported by the results of this study. Future work should consider the development of a psoriatic arthritis foot-specific patient reported outcome measure, using the LFIS-RA as an important foundation.

Perspectives of patients and health professionals on the experience of living with psoriatic arthritis-related foot problems: a qualitative investigation.

OBJECTIVE: The aim of the study was to explore how foot problems impact on the lives of people with psoriatic arthritis by interviewing patients and health professionals. METHOD: Participants were recruited from outpatient rheumatology clinics in Sydney, Australia, and in Auckland, New Zealand, using a convenience sampling strategy. People with psoriatic arthritis were asked questions in semi-structured interviews about their foot problems and the impact they have on daily living until qualitative data saturation. Focus groups were undertaken with health professionals to explore their understanding of the patient experience of psoriatic arthritis-related foot problems. All interviews were audio-recorded and transcribed verbatim. Constant comparative analysis was used to identify emerging themes from the data. RESULTS: Twenty-one people with psoriatic arthritis-related foot problems and 17 health professionals participated. Three overarching key themes were derived from patients and health professionals: (1) structural and functional foot manifestations, (2) impact on daily life leading to social withdrawal and reduced work productivity and (3) mediating factors influencing the severity of impact from foot problems on their lives such as social support, self-management strategies and experiences of health care. CONCLUSION: Foot problems caused functional disability and altered self-concept, which lead to a cascade of social, economic and psychological consequences. People with foot problems contend with profound disruption to their functioning and life roles. Whilst health professionals recognised the functional and visual impact that foot problems have on daily life, the emotional burden may be under-appreciated. Future work to determine the scale and types of foot problems in psoriatic arthritis is required.

Qualitative cross-cultural exploration of breast symptoms and impacts associated with hormonal treatments for menopausal symptoms to inform the development of new patient-reported measurement tools.

To explore cross-cultural experiences of women taking estrogen plus progestin therapies (EPT) and develop a symptom-based electronic diary and impact questionnaire for EPT-related breast symptoms. (1) Concept elicitation interviews were conducted with women in the US (n=14), Italy (n=15), Mexico (n=15) and China (n=15) to explore breast symptoms associated with EPT. Patients completed the Breast Sensitivity Questionnaire (BSQ) to evaluate understanding and comprehensiveness. (2) Based on concept elicitation, a 6-item eDiary (Breast Pain/Tenderness Daily Diary - BPT-DD) was generated and the BSQ modified forming the 18-item Breast Sensations Impact Questionnaire (BSIQ). (3) The measures were pilot-tested and then cognitively debriefed with US women receiving EPT. All qualitative data was subject to thematic analysis. Concept elicitation identified breast pain/tenderness, swollen breasts and sensitivity to contact as important symptoms, impacting women's emotional well-being, relationships with family/friends, social life, sleep, ability to move freely, contact, clothing and sexual activity. Experiences were relatively consistent across the country samples. Based on pilot testing and cognitive debriefing, the BPT-DD was reduced to 4 items (and renamed the Breast Pain Daily Diary - BP-DD) and the BSIQ was reduced to 13 items due to conceptual redundancy. Women taking EPT in the US, China, Mexico and Italy reported breast sensations that have a detrimental impact on quality of life. Two new measures were developed to assess the severity and impact of breast pain specific to EPT. This work highlights that EPT-related symptoms should be part of treatment decision-making, and treatments with less burdensome side effects are needed.

Qualitative cross-cultural exploration of vaginal bleeding/spotting symptoms and impacts associated with hormone therapy in post-menopausal women to inform the development of new patient-reported measurement tools.

OBJECTIVES: To understand the vaginal bleeding/spotting experiences of postmenopausal (PM) women taking estrogen plus progestin therapies (EPT) and develop measures to assess these symptoms and their impact on women's daily lives in four countries. DESIGN: (1) Concept elicitation interviews were conducted with PM women in the US (n=14), Italy (n=15), Mexico (n=15) and China (n=15) to explore vaginal bleeding/spotting symptoms associated with EPT. The Post-Menopausal Bleeding Questionnaire (PMBQ) was also debriefed to evaluate understanding and comprehensiveness. (2) Based on concept elicitation, a single item electronic daily diary was developed and the PMBQ modified to form a 12-item impact measure. (3) The measures were pilot-tested and then cognitively debriefed with US women receiving EPT. All qualitative data was subject to thematic analysis. MAIN OUTCOME MEASURES: The Vaginal Bleeding/Spotting Daily Diary, (VBS-DD) and Post-Menopausal Bleeding Impact Questionnaire (PMBIQ) were developed in this study. RESULTS: Concept elicitation identified vaginal bleeding and spotting as important symptoms for women taking EPT, impacting their emotional wellbeing, social life, ability to move freely, clothing and sexual activity. Based on pilot testing and cognitive debriefing, women demonstrated good understanding of the VBS-DD and the PMBQ was reduced to 10 items due to conceptual redundancy. CONCLUSIONS: Women taking EPT in the US, China, Mexico and Italy reported vaginal bleeding/spotting symptoms that have a detrimental impact on their quality of life. Two new measures were developed to assess the severity and impact of vaginal bleeding/spotting specific to EPT. This work highlights the need for EPT-related symptoms to be a part of treatment decision-making.

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

BACKGROUND: Patient 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. METHOD: A 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. CONCLUSIONS: This 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.

Development of a patient-reported outcome measure for the foot affected by rheumatoid arthritis.

OBJECTIVE: To develop an idiographic and nomothetic patient-reported outcome measure (PROM) for the assessment and evaluation of patients with feet affected by rheumatoid arthritis (RA). STUDY DESIGN AND SETTING: The development of the Salford Rheumatoid Arthritis Foot Evaluation (SAFE) Instrument PROM was divided into four stages: establishment of the PROM's conceptual basis and content generation, following a descriptive phenomenological study; clinimetric instrument development; instrument pretesting, involving expert reviews and cognitive interviews; and demonstration of instrument measurement properties, including convergent validity and test-retest reliability of the nomothetic scale. RESULTS: A total of 123 items were initially generated for the SAFE, with 25 of them clinimetrically selected for nomothetic scale (SAFE-Part A) and 80 items initially included in the idiographic scale (SAFE-Part B). The pretesting strategy proved effective for improving and refining the SAFE, with the final draft consisting of 19 items in Part A and 42 items in Part B. The SAFE-Part A has strong evidence for convergent validity and test-retest reliability. CONCLUSION: The SAFE features a nomothetic and idiographic assessment strategy that, with further development, will prove to be a valuable tool for clinicians involved in managing the foot health problems associated with RA.

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

BACKGROUND: The 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. METHODS: A 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. RESULTS: A 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. CONCLUSIONS: There 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.