OMERACT Core outcome measurement set for shared decision making in rheumatic and musculoskeletal conditions: a scoping review to identify candidate instruments.

OBJECTIVES: Shared decision making (SDM) is a central tenet in rheumatic and musculoskeletal care. The lack of standardization regarding SDM instruments and outcomes in clinical trials threatens the comparative effectiveness of interventions. The Outcome Measures in Rheumatology (OMERACT) SDM Working Group is developing a Core Outcome Set for trials of SDM interventions in rheumatology and musculoskeletal health. The working group reached consensus on a Core Outcome Domain Set in 2020. The next step is to develop a Core Outcome Measurement Set through the OMERACT Filter 2.2. METHODS: We conducted a scoping review (PRISMA-ScR) to identify candidate instruments for the OMERACT Filter 2.2 We systematically reviewed five databases (Ovid MEDLINE®, Embase, Cochrane Library, CINAHL and Web of Science). An information specialist designed search strategies to identify all measurement instruments used in SDM studies in adults or children living with rheumatic or musculoskeletal diseases or their important others. Paired reviewers independently screened titles, abstracts, and full text articles. We extracted characteristics of all candidate instruments (e.g., measured construct, measurement properties). We classified candidate instruments and summarized evidence gaps with an adapted version of the Summary of Measurement Properties (SOMP) table. RESULTS: We found 14,464 citations, read 239 full text articles, and included 99 eligible studies. We identified 220 potential candidate instruments. The five most used measurement instruments were the Decisional Conflict Scale (traditional and low literacy versions) (n=38), the Hip/Knee-Decision Quality Instrument (n=20), the Decision Regret Scale (n=9), the Preparation for Decision Making Scale (n=8), and the CollaboRATE (n=8). Only 44 candidate instruments (20%) had any measurement properties reported by the included studies. Of these instruments, only 57% matched with at least one of the 7-criteria adapted SOMP table. CONCLUSION: We identified 220 candidate instruments used in the SDM literature amongst people with rheumatic and musculoskeletal diseases. Our classification of instruments showed evidence gaps and inconsistent reporting of measurement properties. The next steps for the OMERACT SDM Working Group are to match candidate instruments with Core Domains, assess feasibility and review validation studies of measurement instruments in rheumatic diseases or other conditions. Development and validation of new instruments may be required for some Core Domains.

Beliefs About Pain in Pediatric Inflammatory and Noninflammatory Chronic Musculoskeletal Conditions: A Scoping Review.

OBJECTIVE: The Common Sense Self-Regulatory Model posits that beliefs about pain influence coping behaviors and subsequent physical and mental health outcomes in children/young people with chronic musculoskeletal conditions. It was unclear how and what beliefs had been investigated in this population, and whether there were similarities and differences in beliefs held about pain by those experiencing inflammatory versus noninflammatory musculoskeletal conditions. This scoping review addressed this gap. METHODS: A systematic search was conducted using four databases (MEDLINE, PsycINFO, Embase, and CINAHL) in November 2021. Primary studies exploring key stakeholders' (including children, parents, and/or healthcare professionals) beliefs about pain underlying pediatric chronic musculoskeletal conditions were synthesized. RESULTS: Eighteen articles were identified. Cross-sectional designs were predominantly used to explore beliefs (n = 6). The majority used questionnaires to assess beliefs (n = 12). Beliefs common across musculoskeletal conditions were that children/young people felt their pain was not understood by others, and pain affected their physical functioning. Differences included children/young people and parents thinking they had some ability to control pain, and causal beliefs relating to underlying disease activity. These pain beliefs were more likely to be held in relation to inflammatory diagnoses. In contrast, children/young people and parents were more likely to view pain as uncontrollable, with more uncertainty regarding underlying causes, relating to noninflammatory diagnoses. CONCLUSIONS: Methods used to explore pain beliefs were inconsistent. Studies identified similarities and differences which appear to be closely related to the underlying diagnosis. Findings justify further exploration to identify potentially modifiable targets to improve pain outcomes in this population.

"My gut feeling is ": An Ethnographic Study Exploring Interprofessional Communication About Children and Adolescents With Chronic Musculoskeletal Pain in Paediatric Rheumatology.

Interprofessional communication about inflammatory and non-inflammatory musculoskeletal conditions is an important component of assessment and management in paediatric rheumatology. Chronic pain is a feature of some of these conditions which likely influences the extent and type of communication about pain. Research investigating interprofessional communication about paediatric pain is limited but has found that communication is inclusive of the biopsychosocial context of children/adolescents as well as their families. The aim of this ethnographic study was to explore interprofessional communication about children and adolescents with chronic musculoskeletal pain in paediatric rheumatology. We observed forty-five healthcare professionals recruited from 3 UK paediatric rheumatology teams during thirty multi-disciplinary team meetings. Contemporaneous field notes created during observations were analysed using grounded theory procedures. Core processes identified in interprofessional communication involved describing, making sense of, and managing children/adolescents with pain and their families. Topic areas discussed within these core processes included healthcare professional perceptions about children's and parents' personality characteristics, as well as healthcare professionals' familiarity with families. Underlying diagnoses and possible attributions of pain aetiology were also discussed. Interprofessional narratives included consideration of the potential anxieties and uncertainties about pain within families. Healthcare professionals communicated about strategies for managing expectations about pain. These findings characterise the nuances in interprofessional communication about pain and can be used to inform future work aimed at understanding and optimising the impact of interprofessional communication on clinical decisions and pain outcomes. PERSPECTIVE: This study characterises the processes (series of actions), the function (purpose) and the content (topic areas) of interprofessional communication about paediatric pain in rheumatology settings. These findings should be used to inform interventions targeting both the appropriateness and effectiveness of this communication.

Exploring the Cross-cultural Acceptability of Digital Tools for Pain Self-reporting: Qualitative Study.

BACKGROUND: Culture and ethnicity influence how people communicate about their pain. This makes it challenging to develop pain self-report tools that are acceptable across ethnic groups. OBJECTIVE: We aimed to inform the development of cross-culturally acceptable digital pain self-report tools by better understanding the similarities and differences between ethnic groups in pain experiences and self-reporting needs. METHODS: Three web-based workshops consisting of a focus group and a user requirement exercise with people who self-identified as being of Black African (n=6), South Asian (n=10), or White British (n=7) ethnicity were conducted. RESULTS: Across ethnic groups, participants shared similar lived experiences and challenges in communicating their pain to health care professionals. However, there were differences in beliefs about the causes of pain, attitudes toward pain medication, and experiences of how stigma and gender norms influenced pain-reporting behavior. Despite these differences, they agreed on important aspects for pain self-report, but participants from non-White backgrounds had additional language requirements such as culturally appropriate pain terminologies to reduce self-reporting barriers. CONCLUSIONS: To improve the cross-cultural acceptability and equity of digital pain self-report tools, future developments should address the differences among ethnic groups on pain perceptions and beliefs, factors influencing pain reporting behavior, and language requirements.

Adoption of Digital Pain Manikins for Research Data Collection: A Systematic Review.

Chronic pain is common and disabling. Researchers need robust methods to collect pain data in large populations to enhance knowledge on pain prevalence, causes and treatment. Digital pain manikins address this by enabling self-reporting of location-specific pain. However, it is unknown to what extent pain studies adopted digital manikins for data collection. Therefore, we systematically searched the literature. We included 17 studies. Most were published after 2017, collected pain data cross-sectionally in ≥50 participants, and reported pain distribution and pain extent as manikin-derived summary metrics. Across the studies, 13 unique manikins were used, of which four had been evaluated. Our review shows that adoption of digital pain manikins in research settings has been slow. Harnessing the digital nature of manikins, enabling use of personal devices, and assessing and improving the reliability, validity and responsiveness of digital manikins will expedite their adoption as digital data collection tools for pain research.

Data protection, information governance and the potential erosion of ethnographic methods in health care?

With the most recent developments to the European General Data Protection Regulations (GDPR) introduced in May 2018, the resulting legislation meant a new set of considerations for study approvers and health-care researchers. Compared with previous legislation in the UK (The Data Protection Act, 1998), it introduced more extensive and directive principles, requiring anybody 'processing' personal data to specifically define how this data will be obtained, stored, used and destroyed. Importantly, it also emphasised the principle of accountability, which meant that data controllers and processors could no longer just state that they planned to adhere to lawful data protection principles, they also had to demonstrate compliance. New questions and concerns around accountability now appear to have increased levels of scrutiny in all areas of information governance (IG), especially with regards to processing confidential patient information. This article explores our experiences of gaining required ethical and regulatory approvals for an ethnographic study in a UK health-care setting, the implications that the common law duty of confidentiality had for this research, and the ways in which IG challenges were overcome. The purpose of this article was to equip researchers embarking on similar projects to be able to navigate the potentially problematic and complex journey to approval.