Tessa Sanderson

University of Birmingham, Birmingham, England, United Kingdom

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Publications (19)60.99 Total impact

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    ABSTRACT: The aim of rheumatoid arthritis (RA) treatment is remission. As treatment should be targeted at outcomes relevant to patients, it is important to understand how patients perceive remission, and to assess whether the current definition of remission adequately reflects these perceptions. The objective of this study is to explore the patient perspective on remission in RA. Nine focus-group discussions in Austria, The Netherlands and UK were conducted, including patients in American College of Rheumatology (ACR)/ European League of Rheumatology (EULAR) remission, self-declared remission and in moderate/high disease activity. Moderators employed a prespecified interview guide helped to engage patients in a discussion on their experience with remission. Inductive thematic analysis was performed within each country, and identified themes were discussed across countries. 47 RA patients (66% women, disease duration 9 years) participated. Three major themes of patient-perceived remission emerged: (1) symptoms would either be absent or strongly reduced, (2) impact of the disease on daily life would diminish by increased independence, ability to do valued activities, improved mood and ability to cope; (3) leading to a return to normality, including work, family role and perception of others. Patients felt the concept of remission was influenced by ageing, side effects of medication, comorbidities, accrued damage to joints and disease duration. Opinions on duration of state, the role of medication and measurement instruments varied widely. Patients characterise remission by the absence or reduction of symptoms, but more directly by decreased daily impact of their condition and the feeling of a return to normality. The next step is to study whether an additional patient-perceived measure of remission may add value to the ACR/EULAR definition of remission.
    Annals of the rheumatic diseases 02/2014; · 8.11 Impact Factor
  • Paul A Bacon, Tessa Sanderson
    Nature Reviews Rheumatology 10/2013; · 9.75 Impact Factor
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    ABSTRACT: OBJECTIVE: The Disease Activity Score in 28 joints (DAS28) is a key measure in clinical practice and clinical trials. There are at least five different versions of the 'Patient Global' Visual Analogue Scale (PG-VAS) being used in the DAS28. The developers suggested that the PG-VAS can be an assessment of global health or disease activity, but did not specify the wording of the question. There is no consensus on what the PG-VAS is intended to capture, and the different words and phrases have not been evaluated. The aim of this study was to test if phrasing affects PG-VAS scores and hence yields different results for the DAS28. METHODS: Fifty patients with rheumatoid arthritis taking biologic agents in a rheumatology outpatient department completed a self-administered questionnaire containing five versions of the 100 mm PG-VAS. RESULTS: All PG-VAS versions correlated strongly with each other (rho = 0.67-0.87, p < 0.0001). However, individual scores for each PG-VAS, when compared with the comparator on a Bland-Altman chart had wide limits of agreement-the largest being -42 mm to +45 mm. The five overall DAS28 scores were calculated for each patient using the five different PG-VAS. The largest difference in DAS28 scores was 0.63. CONCLUSION: Different phrasing of the PG-VAS gives different DAS28 results. As the DAS28 is a key outcome measure, such differences have the potential to influence clinical decisions relating to eligibility for biologic agents and evaluation of new therapies. We urgently need to decide on the concept to be measured and the phrasing required to capture this. The PG-VAS phrasing should then be standardized and validated. Copyright © 2013 John Wiley & Sons, Ltd. Copyright © 2013 John Wiley & Sons, Ltd.
    Musculoskeletal Care 02/2013;
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    ABSTRACT: In rheumatoid arthritis (RA), the use of a 'core' set of treatment outcomes was pioneered to ensure that the same outcomes are measured across all clinical trials to enable comparison of trial results. However, studies have not investigated the influence of patients' ethnic and cultural backgrounds on treatment outcomes. This pilot study identified 74 treatment outcomes from female Punjabi RA patients, including 21 new ones that were not identified in previous research with white British RA patients. The social impact of RA created significant additional burden for these Punjabi women, with 'less stigmatisation' and 'improved ability to carry out family duties' generated as important new outcomes. This study illustrates a need to address cultural validity in outcome elicitation and prioritisation, to ensure that interventions are evaluated using criteria that have meaning for people with that condition.
    British journal of nursing (Mark Allen Publishing) 09/2012; 21(17):1015-23.
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    ABSTRACT: OBJECTIVE: For rheumatoid arthritis (RA), there is no consensus on how to define and assess flare. Variability in flare definitions impairs understanding of findings across studies and limits ability to pool results. The OMERACT RA Flare Group sought to identify domains to define RA flares from patient and healthcare professional (HCP) perspectives. METHODS: Flare was described as a worsening of disease activity of sufficient intensity and duration to consider a change in therapy. International patients and HCPs participated in separate and combined rounds of Delphi exercises to rate candidate flare domains previously generated in patient focus groups. Core domains were defined as those with ≥70% ratings of being 'essential' according to the third/final Delphi exercise. RESULTS: The final Delphi included 125 RA patients from 10 countries and 108 HCPs from 23 countries who rated 14 domains. Patients had a mean (±SD) age of 56±12 years and disease duration of 18±12 years. HCPs included physicians from clinical practice/research and industry, allied health providers and researchers with 17±11 years experience. Core domains comprised: pain (93%), function (89%), swollen joints (84%), tender joints (81%), participation (81%), stiffness (79%), patient global assessment (76%) and self-management (75%). Fatigue (68%), which did not reach group consensus, will receive additional consideration. CONCLUSIONS: As part of the process to develop a measure for RA flare, patients and HCPs agreed on eight core domains. Next steps include identifying items to assess domains and conducting studies to validate and refine a new measure.
    Annals of the rheumatic diseases 07/2012; 71(11):1855-1860. · 8.11 Impact Factor
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    ABSTRACT: The workshop Choosing or Developing Instruments held at the Outcome Measures in Rheumatology (OMERACT) 10 meeting was designed to help participants think about the underlying methods of instrument development. Conference pre-reading material and 3 brief introductory presentations elaborated the issues, and participants broke into discussion groups before reconvening to share insights, engage in a more general discussion of the issues, and vote on recommendations. Tradeoffs between using current imperfect measures and the long and complex process of developing new instruments were considered, together with the need for rigor in patient-reported outcome (PRO) instrument development. The main considerations for PRO instrument development were listed and a research agenda for action produced. As part of the agenda for action, it is recommended that researchers and patient partners work together to tackle these issues, and that OMERACT bring forward proposals for acceptable instrument development protocols that would meet an enhanced "Truth" statement in the OMERACT Filter.
    The Journal of Rheumatology 08/2011; 38(8):1711-5. · 3.26 Impact Factor
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    ABSTRACT: While disease flares in rheumatoid arthritis (RA) are a recognized aspect of the disease process, there is limited formative research to describe them. The Outcome Measures in Rheumatology Clinical Trials (OMERACT) RA Flare Definition Working Group is conducting an international research project to understand the specific characteristics and impact of episodic disease worsening, or "flare," so that outcome measures can be developed or modified to reflect this uncommonly measured, but very real and sometimes disabling RA disease feature. Patient research partners provided critical insights into the multidimensional nature of flare. The perspectives of patients and healthcare and research professionals are being integrated to ensure that any outcome measurement to detect flares fulfills the first OMERACT criteria of Truth. Through an iterative data-driven Delphi process, a preliminary list of key domains has been identified to evaluate flare. At OMERACT 10, consensus was achieved identifying features of flare in addition to the existing core set for RA, including fatigue, stiffness, symptom persistence, systemic features, and participation. Patient self-report of flare was identified as a component of the research agenda needed to establish criterion validity for a flare definition; this can be used in prospective studies to further evaluate the Discrimination and Feasibility components of the OMERACT filter for a flare outcome measure. Our work to date has provided better understanding of key aspects of the RA disease process as episodic, potentially disabling disease worsening even when a patient is in low disease activity. It also highlights the importance of developing ways to enhance communication between patients and clinicians and improve the ability to achieve "tight control" of disease.
    The Journal of Rheumatology 08/2011; 38(8):1751-8. · 3.26 Impact Factor
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    ABSTRACT: Over the years, Outcome Measures in Rheumatology Clinical Trials (OMERACT) has worked toward consensus on core sets for outcome measurement in specific rheumatologic diseases. OMERACT core sets refer to the minimum number of domains and instruments essential to address the desired outcomes in trials. "Domains" are the attributes of an activity or function. This article discusses the need for an open process for selecting domains, existing frameworks for choosing domains, and the importance of describing the methods for selecting domains. We reviewed the domains selection process of 3 OMERACT groups working on patient-reported outcomes (PRO). We categorized these methods in a hierarchy of comprehensiveness and examined the extent to which they address related issues. There was agreement that a gold standard for domain selection would include 3 important aspects: following a framework, remaining true to the clinical question, and including the clinically relevant outcomes for both benefits and harms. OMERACT participants agreed that a guide for the options for developing domains that meet the OMERACT Filter would be useful. More discussion and explanation is needed to outline outcomes related to the patient perspective that are not covered by the current version of the International Classification of Functioning, Disability and Health (ICF) and to explain the usefulness of the population/intervention/comparison/outcome (PICO) structure in domain selection. Future OMERACT work includes addressing these issues and developing a framework based on the ICF to support comprehensive outcome measurements.
    The Journal of Rheumatology 08/2011; 38(8):1702-10. · 3.26 Impact Factor
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    ABSTRACT: Rheumatoid arthritis (RA) patients and healthcare professionals (HCP) recognize that episodic worsening disease activity, often described as a "flare," is a common feature of RA that can contribute to impaired function and disability. However, there is no standard definition to enable measurement of its intensity and impact. The conceptual framework of the Outcome Measures in Rheumatology Clinical Trials (OMERACT) RA Flare Definition Working Group includes an anchoring statement, developed at OMERACT 9 in 2008: "flare in RA" is defined as worsening of signs and symptoms of sufficient intensity and duration to lead to change in therapy. Subsequently, domains characterizing flare have been identified by comprehensive literature review, patient focus groups, and patient/HCP Delphi exercises. This led to a consensus regarding preliminary domains and a research agenda at OMERACT 10 in May 2010. The conceptual framework of flare takes into account validated approaches to measurement in RA: (1) various disease activity indices (e.g., Disease Activity Score, Clinical Disease Activity Index, Simplified Disease Activity Index); (2) use of patient-reported outcomes (PRO); and (3) characterization of minimally clinically detectable and important differences (MCDD, MCID). The measurement of RA flare is composed of data collection assessing a range of unique domains describing key features of RA worsening at the time of patient self-report of flare, and then periodically for the duration of the flare. The components envisioned are: (1) Patient self-report using a "patient global question" with well characterized and validated anchors; (2) Patient assessment using a flare questionnaire and PRO available at the time of each self-report; (3) Physician/HCP assessment of disease activity status; and (4) Physician's determination whether to change treatment. In randomized controlled trials and observational studies, such a conceptual approach is intended to lead to a valid measure of this outcome/response, thus expanding an understanding of the true impact of a therapy to limit disease activity. Clinically, this approach is intended to enhance patient-HCP communication. This article describes the conceptual framework being used by the OMERACT RA Flare Definition Working Group in developing a standardized method for description and measurement of "flare in RA" to guide individual patient treatment.
    The Journal of Rheumatology 08/2011; 38(8):1745-50. · 3.26 Impact Factor
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    ABSTRACT: The nominal group technique generates quantitative data through a process of experts ranking items of interest. This article focuses on the additional collection of qualitative data from nominal groups with rheumatoid arthritis (RA) patients, used to explore the influences on prioritizing treatment outcomes. Across all groups, the top five outcomes with the highest importance scores were identified as: pain; joint damage; fatigue; activities of daily living; and mobility. Qualitative findings showed that the personal impact of RA influenced decisions on how to rank specific outcomes through four domains: disease impact; adaptation to illness; external resources and stressors; and social expectations.
    Journal of Health Psychology 06/2011; 17(1):132-42. · 1.88 Impact Factor
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    ABSTRACT: People with RA have episodes of worsening disease activity (flares) that prompt them to seek clinical review or medication change. This study explored patients' perspectives of flare that prompts them to seek medication review. Fourteen focus groups across five countries comprised 67 RA patients. Transcripts were analysed by several researchers and a patient, using inductive thematic analysis. Patients use flare for five different scenarios, including flare that prompts medical help-seeking, where six themes were identified. In 'Symptoms and early warnings', pain is intense (wanting to die), constant and persistent and considered a key feature. Systemic features predominate, including fatigue, feeling generally ill (flu-like), physical and cognitive shut-down and social withdrawal. Warning signs (prodrome) comprise fatigue and flu-like symptoms. 'Self-management of intensifying symptoms' includes pacing, heat/cold, rest and increasing medication, often without medical advice. Patients 'Define this as uncontrollable flare' when clusters of unprovoked, persistent symptoms halt their ability to run daily life, until prompted into 'Seeking help when symptoms can't be contained'. Underpinning themes are 'Individual context' (e.g. different symptom clusters) and 'Uncertainty' (e.g. when to seek help). Patients report that the current patient global visual analogue scale (VAS) does not capture flare. Patients use flare for multiple events and seek help for complex clusterings of intense, unprovoked symptoms that defy self-management, not necessarily captured in joint counts or global VAS. Flare terminology and definition have implications for clinical practice and trials, therefore further research should establish a professional/patient consensus.
    Rheumatology (Oxford, England) 05/2011; 51(1):69-76. · 4.24 Impact Factor
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    ABSTRACT: Biographical disruption and related concepts have been widely applied in chronic illness. Different conceptualisations of normalisation have also been proposed in order to explain individuals' diverse responses to illness on their biography, but as yet, not clearly related to changing bodily experience or normalisation of symptoms. This article aims to examine the relevance of these concepts in rheumatoid arthritis (RA), an unpredictable autoinflammatory disease characterised by painful and swollen joints, disability, fatigue and joint damage. Interviews were conducted with 23 people living with RA, and analysed using Framework, to enable people's whole narratives and context to be considered. Six typologies of normality emerged from the data: disrupted; struggling to maintain; fluctuating; resetting; returning; and continuing normality. Multiple normalities were often present in individuals' narratives, with one normality typology usually dominating at the time of the interview. The typologies connect to several biographical concepts, and instances of 'biographical reinstatement' were also found, where participants described returning to normal life, through perceived effective medication rather than reconceptualisation of health. The concept of 'shifting normalities' is proposed, providing a dynamic explanatory model of chronic illness that captures the interaction of changing conceptions of a normal life and the normalisation of symptoms.
    Sociology of Health & Illness 02/2011; 33(4):618-33. · 1.88 Impact Factor
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    The Journal of Rheumatology 02/2011; 38(2):191-4. · 3.26 Impact Factor
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    ABSTRACT: The aim of this study was to explore the meaning of 'feeling well' for people with rheumatoid arthritis (RA). In-depth interviews were conducted with 23 RA patients, purposively sampled for medication type, disease duration, disease activity, age and gender. Data were analysed using Framework, emphasizing participants' personal contexts. Well-being was viewed as a broad concept, with 'feeling well' being the result of an on-going process to actively engage with a changing body, self and life. Four dimensions emerged: 'Living in the body', 'Being in the mind', 'Adapting to illness' and 'Being in the world'. The physical impact of RA underpinned the global perception of well-being and was clearly described as linking to the experience of psychological well-being. Physical and psychological wellness was often affected by the individual's adaptation to RA and personal context (e.g. home environment, broader social attitudes). Well-being is a multidimensional concept that is meaningful to RA patients regardless of medication type and disease severity. Patients commonly illustrated a process of actively engaging in cognitive and behavioural adjustments to move towards wellness. Clinical practice and research must take account of the complexity of well-being in long-term conditions, in order to fulfil patients' expectations.
    Chronic Illness 09/2010; 6(3):228-40.
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    ABSTRACT: Collaboration with patients with rheumatoid arthritis (RA) highlights that outcomes important to them include fatigue, coping, and life enjoyment. However, these are not commonly measured in clinical trials. There is little evidence about which outcomes patients would prioritize, or what factors influence patients' prioritization. Our objective was to develop a complementary core set with patients to promote inclusion of their priority outcomes in pharmacologic interventions. Nominal groups were conducted with RA patients to rank 63 outcomes generated from previous in-depth interviews. A multicenter postal survey provided the final selection of core outcomes for the Rheumatoid Arthritis Patient Priorities for Pharmacologic Interventions (RAPP-PI), in which RA patients rated the importance of the priority outcomes from the nominal groups and ranked the top 6. Twenty-six patients participated in 5 nominal group discussions and reduced the 63 initial outcomes to the 32 most important. A total of 254 participants in the survey ranked priority treatment outcomes to form the RAPP-PI: pain, activities of daily living, joint damage, mobility, life enjoyment, independence, fatigue, and valued activities. The 8 priorities represent 3 domains of treatment outcomes: direct impact of RA, psychosocial well-being, and function/participation. Chi-square tests showed that disease severity, disease duration, sex, and patients' perceptions of managing, self-efficacy, and normality influenced the selection of priority treatment outcomes. Collaboration with patients has captured their perspectives of priority outcomes from pharmacologic interventions. Although there is some overlap with professional core outcomes, the additional use of this complementary set will give a broader evaluation of effectiveness of interventions from the key stakeholders: patients.
    Arthritis care & research. 05/2010; 62(5):647-56.
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    ABSTRACT: Function, patient global assessment, and pain are routinely measured in rheumatoid arthritis (RA) clinical trials. However, other patient-reported outcomes identified as important to patients in qualitative studies, such as fatigue and quality of life, are commonly not included, and modern treatment regimens may have changed patients' expectations of treatment outcomes. Our objective was to elicit patient priority treatment outcomes for pharmacologic interventions since the common use of anti-tumor necrosis factor (anti-TNF) therapy, which will form the basis of a core set of patient priorities to complement existing professional core sets. In-depth interviews were conducted with 23 RA patients, purposively sampled for age, sex, medication (anti-TNF or other disease-modifying antirheumatic drugs), disease severity, and work status. Grounded theory guided iterative data collection and analysis. Coding of the data was peer reviewed. A patient research partner collaborated in the research design and analysis. Sixty-three different outcomes important to patients were generated from the interviews. Four major categories of patient outcomes from pharmacologic treatments were developed: "RA under control," "Doing things," "Emotional health," and "Coping with illness." The core category (or overall theme) was "Minimizing the personal impact of RA." Although the routine outcomes of pain, function, and overall well-being were raised by the patients, they also generated a further 60 important outcomes that they look for from treatment. This difference in perspective may potentially influence treatment decisions. The next step is therefore to use these data to develop a patient core set.
    Arthritis care & research. 05/2010; 62(5):640-6.
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    ABSTRACT: The Patient Perspective Workshop included over 100 researchers and 18 patient participants from 8 countries. Following preconference reading and short plenary presentations, breakout groups considered work undertaken on measurement of sleep, assessing interventions to develop the effective consumer, and assessing psychological and educational interventions. The workshop explored the best way to identify other outcome domains (and instruments) that should be measured in observational or interventional studies with broader intentions than simply altering outcomes captured in the traditional "core set" plus fatigue. Four sleep questionnaires showed promise and will be the subject of further study. The Effective Consumer scale (EC-17) was reviewed and the concept Effective Consumer was well received. Participants thought it worthwhile to measure the skills and attributes of an effective consumer and develop an intervention that would include education in all of the scale's categories. Assessment of educational and psychological interventions requires a wider set of instruments than is currently used; these should relate to the purpose of the intervention. This principle was extended to include wider measures of the impact of disease on life, as indicated in the International Classification of Functioning, Disability and Health. Life impact measure sets covering domains appropriate to different rheumatic conditions and focused on different interventions might be defined by future OMERACT consensus. Measurement instruments within these domains that are valid for use in rheumatic conditions can then be identified and, in the case of psychological and educational interventions, chosen to fit with the purpose of the intervention.
    The Journal of Rheumatology 10/2009; 36(9):2071-6. · 3.26 Impact Factor
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    Tessa Sanderson, John Kirwan
    Arthritis & Rheumatology 01/2009; 61(1):1-3. · 7.48 Impact Factor
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    ABSTRACT: To explore rheumatoid arthritis (RA) patients' experience of access to anti-tumour necrosis factor (anti-TNF) therapy in the UK, and of switching therapies after an initial failure. Patients were asked about their experience of accessing, receiving and discontinuing anti-TNF therapy in face-to-face indepth interviews, within the context of the larger study about treatment outcomes. Seventeen individuals with a diagnosis of RA and experience of receiving anti-TNF therapy were interviewed in one hospital trust in England. Different emotions (Theme 1) surrounded the process of accessing anti-TNF therapy: hope, desperation, apprehension, anxiety and frustration. Experience of receiving anti-TNF therapy (Theme 2) included not only positive transformation, but also fear of failure and discontinuation. The subsequent value that patients placed on anti-TNF therapy (Theme 3) included having a right to receive therapy and being lucky. These three themes were underpinned by the core category of 'willing to try anything'. Those switching therapies reported increased caution over the possibility of recurring side effects, but some suggestion of benefit. There was a perception that access to anti-TNF therapy was restricted by cost, rather than being recommended for those in clinical need. Anti-TNF therapies may have a sudden and dramatic impact on RA patients' lives that contrast with other available medications. However, the stress of the patient's journey through the need to 'qualify' for anti-TNF therapy, and the fear of failing or discontinuation of therapy, should not be underestimated by clinicians.
    Musculoskeletal Care 01/2009; 7(3):194-209.