Stakeholder outcome prioritization in the Biologic Abatement and Capturing Kids' Outcomes and Flare Frequency in Juvenile Spondyloarthritis (BACK‐OFF JSpA) trial

BackgroundThe Biologic Abatement and Capturing Kids’ Outcomes and Flare Frequency in Juvenile Spondyloarthritis (BACK‐OFF JSpA) study is a randomized, pragmatic trial investigating different tumour necrosis factor inhibitor de‐escalation strategies for children with sustained inactive disease. In this project, we elicited concept rankings that aided in the selection of the patient‐reported outcome (PRO) measures that should be examined as part of the BACK‐OFF JSpA trial.MethodsWe conducted a discrete choice experiment to evaluate individuals'' preferences regarding PROs. Stakeholders assessed a discrete list of 21 outcome concepts, each of which had a Patient‐Reported Outcome Measurement Information System (PROMIS) measure associated with it. PROMIS measures are self‐ or proxy‐reported instruments that are universally applicable to the general population and all chronic conditions. Stakeholders were required to make choices instead of expressing the strength of a preference.ResultsFourteen caregivers, 12 patients (9–22 years old), 16 rheumatologists and three executives from health insurance companies completed the exercise, which took approximately 10 min. The discrete choice experiment resulted in an estimate of the relative importance of each outcome and rank. All stakeholder groups agreed that the primary PRO should be ‘Pain Interference’, a measure that evaluates the effect of pain on a child''s everyday activities, including its impact on social, emotional, mental and physical functioning. Patients and caregivers were mostly aligned in their top priorities, with patients valuing physical health (50% of the top 10) whereas caregivers were more interested in mental health (60% of the top 10). Rheumatologists and health insurance executives were most interested in physical health outcomes, which were ranked 80% and 60% of their top 10 PROs, respectively. Overall, the patients had the most diverse set of prioritized outcomes, including at least one of each category in their top 10 rank order of importance. Patients were also the only stakeholders to prioritize ‘social’ health.ConclusionsPatients and caregivers were mostly aligned in their outcome priority rankings. The rank‐order list directly informed the creation of a profile of PRO measures for our upcoming trial.Patient or Public ContributionStakeholder partners helped with acquisition of data and lead parent partners helped interpret data.     

Priorities of patients,caregivers and health‐care professionals for health research – A systematic review

BackgroundBased on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance.ObjectiveThis article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used.Search strategyThree electronic databases were searched on 22 May 2018. The search was not limited to any time period or language.Inclusion criteriaThe included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem.Data extraction and synthesisThe 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme.Main resultsThe priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are ‘Treatment’, ‘Patients’ and ‘Health condition’. The distribution of the research priorities varied depending on the health conditions and prioritization methods.Discussion and conclusionsThis review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research.     

Prioritizing Chinese medicine clinical research questions in cancer palliative care from patient and caregiver perspectives

BackgroundChinese medicine (CM) modalities, including acupuncture and Chinese herbal medicine (CHM), are popular palliative interventions among patients with cancer, but further clinical research is required to assess their effectiveness and safety.ObjectiveTo prioritize top ten important CM clinical research questions from patients with cancer, cancer survivors and caregivers’ perspectives via a face‐to‐face prioritization workshop in Hong Kong.MethodsA list of 25 CM clinical research questions for cancer palliative care, which were identified from existing systematic reviews (SRs) and overview of SRs, was presented to 17 participants (patients with cancer [n = 5], cancer survivors [n = 6] and caregivers [n = 6]). The participants were then invited to establish consensus on prioritizing top ten research questions.ResultsAmong the top ten priorities, five (50%) focused on acupuncture and related therapies, while five (50%) were on CHM. The three most important research priorities were (i) manual acupuncture plus opioids for relieving pain; (ii) CHM for improving quality of life among patients receiving chemotherapy; and (iii) concurrent use of CHM plus loperamide for reducing stomatitis.ConclusionThe top ten participant‐endorsed CM clinical research priorities for cancer palliative care can guide local researchers on future direction. They can also inform local research funders on patient‐centred allocation of limited funding. Under limited research funding, the most important co‐prioritized research question from professional and patient perspectives may be addressed first.Patient or Public ContributionPatients with cancer, cancer survivors and caregivers participated in conduct of the study to prioritize CM clinical research questions.     

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

ObjectiveWe conducted a UK‐wide survey to identify the top 10 research questions for young people''s cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer.DesignJames Lind Alliance Priority Setting Partnership.ParticipantsYoung people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population.MethodsEight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis.ResultsThe 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research.ConclusionsThe need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes.Patient/public contributionsPatients and carers were equal stakeholders throughout.     

The manifestation of participation within a co‐design process involving patients,significant others and health‐care professionals

BackgroundDespite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed.ObjectiveThe aim of this study was to describe how user participation manifests itself within a co‐design process involving patients, significant others and health‐care professionals, including potential enablers or barriers.MethodsThis study was conducted in the context of a co‐design process of a new person‐centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi‐structured interviews and questionnaires.ResultsFour categories: ‘Composition of individuals for an adaptive climate’; ‘The balancing of roles and power’; ‘Different perspectives as common ground for a shared understanding’; and ‘Facilitating an unpredictable and ever‐adaptive process’, with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute.Discussion/ConclusionParticipation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co‐design processes should allow for varying levels of participation among the participants and throughout the process.Patient or public contributionPatients, significant others and health‐care professionals participated as co‐designers of a care transition model between hospital and home.     

Developing an obesity research agenda with British Pakistani women living in deprived areas with involvement from multisectoral stakeholders: Research priority setting with a seldom heard group

IntroductionBritish Pakistani women have exceptionally high rates of obesity and yet are seldom heard in a research priority setting concerning weight management. The objectives of this study were (i) to ascertain what multisectoral professionals perceive to be the most pressing unmet obesity needs or topic areas that need more research in relation to Pakistani women living in deprived areas of Bradford and (ii) to determine the top 10 obesity health priorities for this group to develop an obesity research agenda.MethodsA two‐step process was adopted using the following: (i) a survey of a wide range of multisectoral professional stakeholders (n = 159) and (ii) a ranking exercise involving Pakistani women living in deprived areas of Bradford (n = 32) to select and prioritize their top 10 obesity health concerns and unmet needs from a list of 31 statements identified in the survey and previous research. Survey data were analysed using inductive content analysis and themes were identified. Themes were translated into statements to be ranked by Pakistani women. The ranking exercise was conducted by telephone either via voice or video call. Data were analysed using a reverse scoring system.ResultsSurvey responses were grouped into statements reflecting the following three categories: education needs; healthy behaviour barriers and mental well‐being. The highest rankings were given by Pakistani women to statements on mental health and the need for education. The top 10 prioritized statements were developed with members of the public into an obesity research agenda that reflected the target population.ConclusionActively engaging British Pakistani women in setting research priorities provided a unique opportunity to understand the key areas they think are important for future research. The culminating research agenda can be used by researchers to advance the field of obesity research in Pakistani communities, thus producing research outputs that are relevant to and have impact in this population.Patient or Public ContributionParticipants in the ranking exercise collected data. Public contributors were involved in developing the prioritized statements into a research agenda.     

Understanding young adults’ reasons for seeking ‘clinically unnecessary’ urgent and emergency care: A qualitative interview study

BackgroundStudies have identified young adults as more likely to use emergency departments for ‘clinically unnecessary’ problems, with limited similar evidence for emergency ambulance use. Media portrayals depict young adults as motivated by ‘convenience’, but little research has explored the reasons for their help‐seeking behaviour.MethodsQualitative interviews with 16 young adults (18‐30) considered by clinicians to have made unnecessary use of emergency ambulance, emergency department or an urgent GP appointment. Data analysis was informed by interpretive phenomenological analysis.FindingsA number of interrelated factors contributed to participants’ decisions. They were anxious about the seriousness of their symptoms, sometimes exacerbated by reduced coping capacity due to poor mental health or life stresses. They looked to others to facilitate their decision making, who sometimes encouraged urgent contact. They wanted to avoid impact on existing day‐to‐day commitments including work or study. They had strong views about different health services, sometimes based on frustration with lack of resolution of on‐going health problems. Convenience was not identified as a significant factor, although some actions could be interpreted in this light if the context was not considered.ConclusionsYoung adults make ‘clinically unnecessary’ use of urgent and emergency care for more than convenience. Their decisions need to be understood in relation to the complexity of their experience, including lack of confidence in making health‐related decisions, lowered coping capacity and concern to maintain normal daily life.     

A qualitative research study on the illness perception of chronic pruritus in older Asian adults based on the Common‐Sense Model of self‐regulation

BackgroundChronic pruritus (CP), itch lasting more than 6 weeks, is common in community‐dwelling older adults. Understanding their illness perception allows the attending physician to develop a personalised care plan to mitigate CP.AimThis study explores the illness perception of CP among older Asian adults in an urban community.DesignQualitative research was conducted, framed by the Common‐Sense Model of self‐regulation (CSM). Through in‐depth interviews (IDIs), qualitative data were gathered from Asian patients with CP, and then a thematic analysis was carried out. The emergent themes were grouped according to the five domains of CSM: ‘identity’, ‘cause’, ‘time’, ‘controllability’ and ‘consequence’.Setting and PatientsIDIs were conducted in a Singapore public primary care clinic before the data were saturated.ResultsThe CSM domains illustrate the illness perception of CP. CP was identified as a ‘problem’ rather than a disease and was often described in metaphor. Patients'' perception of the cause was diverse due to the lack of provision of a clear explanation by their physicians. They opined that CP continued indefinitely. Without definite time to resolution, patients adapted their help‐ and health‐seeking behaviours to control it. The consequences included therapeutic experimentation, alternative therapy, self‐isolation, avoidance behaviours, emotional disturbance and dermatological complications.Conclusion and Patient ContributionPatients provided information on their perception of CP, which aligned with the CSM. A multipronged approach is needed to deliver holistic and personalised care to patients with CP, providing clarity on its natural progression, to set their expectations on its timeline, treatment effectiveness and undertake appropriate behaviour modification to adapt to its chronicity.     

Codesigning person‐centred quality indicators with diverse communities: A qualitative patient engagement study

IntroductionEffective engagement of underrepresented communities in health research and policy remains a challenge due to barriers that hinder participation. Our study had two objectives: (1) identify themes of person‐centred care (PCC) from perspectives of diverse patients/caregivers that would inform the development of person‐centred quality indicators (PC‐QIs) for evaluating the quality of PCC and initiatives to improve PCC and (2) explore innovative participatory approaches to engage ethnocultural communities in qualitative research.MethodsDrawing on participatory action research methods, we partnered with a community‐based organization to train six ‘Community Brokers’ from the Chinese, Filipino, South Asian, Latino‐Hispanic, East African and Syrian communities, who were engaged throughout the study. We also partnered with the provincial health organization to engage their Patient and Family Advisory, who represented further aspects of diversity. We conducted focus group discussions with patients/caregivers to obtain their perspectives on their values, preferences and needs regarding PCC. We identified themes through our study and engaged provincial stakeholders to prioritize these themes for informing the development of PC‐QIs and codesign initiatives for improving PCC.ResultsEight focus groups were conducted with 66 diverse participants. Ethnocultural communities highlighted themes related to access and cost of care, language barriers and culture, while the Patient and Family Advisory emphasized patient and caregiver engagement. Together with provincial stakeholders, initiatives were identified to improve PCC, such as codesigning innovative models of training and evaluation of healthcare providers.ConclusionIncorporating patient and community voices requires addressing issues related to equity and understanding barriers to effective and meaningful engagement.Patient or Public ContributionPatient and public engagement was central to our research study. This included partnership with a community‐based organization, with a broad network of ethnocultural communities, as well as the provincial health service delivery organization, who both facilitated the ongoing engagement of diverse patients/caregiver communities throughout our study including designing the study, recruiting participants, collecting and organizing data, interpreting findings and mobilizing knowledge. Drawing from participatory action research methods, patients and the public were involved in the codesign of the PC‐QIs and initiatives to improve PCC in the province based on the findings from our study.     

Sociocultural influences on asthma self‐management in a multicultural society: A qualitative study amongst Malaysian adults

BackgroundSupported self‐management improves asthma outcomes, but implementation requires adaptation to the local context. Barriers reported in Western cultures may not resonate in other cultural contexts. We explored the views, experiences and beliefs that influenced self‐management among adults with asthma in multicultural Malaysia.MethodsAdults with asthma were purposively recruited from an urban primary healthcare clinic for in‐depth interviews. Audio‐recordings were transcribed verbatim and analysed thematically.ResultsWe interviewed 24 adults. Four themes emerged: (1) Participants believed in the ‘hot and cold’ concept of illness either as an inherent hot/cold body constitution or the ambient temperature. Hence, participants tried to ‘neutralize’ body constitution or to ‘warm up’ the cold temperature that was believed to trigger acute attacks. (2) Participants managed asthma based on past experiences and personal health beliefs as they lacked formal information about asthma and its treatment. (3) Poor communication and variable advice from healthcare practitioners on how to manage their asthma contributed to poor self‐management skills. (4) Embarrassment about using inhalers in public and advice from family and friends resulted in a focus on nonpharmacological approaches to asthma self‐management practice.ConclusionsAsthma self‐management practices were learnt experientially and were strongly influenced by sociocultural beliefs and advice from family and friends. Effective self‐management needs to be tailored to cultural norms, personalized to the individuals'' preferences and clinical needs, adapted to their level of health literacy and underpinned by patient–practitioner partnerships.Patient and Public ContributionsPatients contributed to data. Members of the public were involved in the discussion of the results.     

Development of the final version of the occupational adaptation questionnaire for family caregivers

BackgroundGiven the growing role of family caregivers in meeting the increasing demand for ageing-related care in Japan, the occupational adaptation of family caregivers needs to be evaluated.MethodsThis study developed the Occupational Adaptation Questionnaire for Family Caregivers (OAQC) and evaluated its reliability, validity, and effectiveness. To develop the OAQC item pool, the construct ‘Occupation of nursing care engaged in by family caregivers’ was evaluated. Using the Delphi method, 8 experts evaluated 64 items and confirmed that 41 items adequately represented the domain. The scale was then completed by 216 family caregivers of users of outpatient service establishments affiliated with hospitals in the Chubu region. The validity of the scale items was tested, and statistical analysis was performed. The construct validity and internal consistency of the OAQC were examined using exploratory factor analysis and the ω coefficient, respectively.ResultsThe discrimination ability and difficulty level were calculated using the item response theory. The findings showed that the scale’s reliability and validity were satisfactory. Construct validity was acceptable for 16 items with 5 factors. The OAQC also had high internal consistency, reliability, and effectiveness. The item slope parameters and difficulty parameters revealed good item response, indicating that the scale could effectively measure family caregivers’ occupational adaptation.ConclusionThe scale was compatible with the data obtained from family caregivers. Given its overall effectiveness, data obtained using the OAQC can contribute towards implementing personal care support programs for caregivers and enriching their lives by offering support from an occupational adaptation perspective.     

The psychological burden of waiting for procedures and patient‐centred strategies that could support the mental health of wait‐listed patients and caregivers during the COVID‐19 pandemic: A scoping review

BackgroundWaiting for procedures delayed by COVID‐19 may cause anxiety and related adverse consequences.ObjectiveTo synthesize research on the mental health impact of waiting and patient‐centred mitigation strategies that could be applied in the COVID‐19 context.MethodsUsing a scoping review approach, we searched 9 databases for studies on waiting lists and mental health and reported study characteristics, impacts and intervention attributes and outcomes.ResultsWe included 51 studies that focussed on organ transplant (60.8%), surgery (21.6%) or cancer management (13.7%). Most patients and caregivers reported anxiety, depression and poor quality of life, which deteriorated with increasing wait time. The impact of waiting on mental health was greater among women and new immigrants, and those of younger age, lower socio‐economic status, or with less‐positive coping ability. Six studies evaluated educational strategies to develop coping skills: 2 reduced depression (2 did not), 1 reduced anxiety (2 did not) and 2 improved quality of life (2 did not). In contrast, patients desired acknowledgement of concerns, peer support, and periodic communication about wait‐list position, prioritization criteria and anticipated procedure date.ConclusionsFindings revealed patient‐centred strategies to alleviate the mental health impact of waiting for procedures. Ongoing research should explore how to optimize the impact of those strategies for diverse patients and caregivers, particularly in the COVID‐19 context.Patient or Public ContributionSix patients and four caregivers waiting for COVID‐19‐delayed procedures helped to establish eligibility criteria, plan data extraction and review a draft and final report.     

Development of an inflammatory bowel disease (IBD) Patient‐Reported Experience Measure (PREM): A patient‐led consensus work and ‘think aloud’ study for a quality improvement programme

BackgroundPatient‐Reported Experience Measures (PREMs) are key in improving healthcare quality, but no PREM exists for inflammatory bowel disease (IBD). This study aimed to co‐produce a PREM with IBD service users for IBD service evaluation and quality improvement programme.MethodsA pool of 75 items was drawn from published survey instruments covering interactions with services and aspects of living with IBD. In Stage 1, during two workshops, eight expert service users reduced candidate items through a ranked‐choice voting exercise and suggested further items. During Stage 2, 18 previously uninvolved people with IBD assessed the face and content validity of the candidate items in ‘Think Aloud’ interviews. During two final workshops (Stage 3), the expert service users removed, modified and added items based on the interview findings to produce a final version of the PREM.ResultsStage 1 generated a draft working PREM mapped to the following four domains: Patient‐Centred Care; Quality; Accessibility; Communication and Involvement. The PREM included a set of nine items created by the expert group which shifted the emphasis from ‘self‐management’ to ‘living with IBD’. Stage 2 interviews showed that comprehension of the PREM was very good, although there were concerns about the wording, IBD‐relevance and ambiguity of some items. During the final two workshops in Stage 3, the expert service users removed 7 items, modified 15 items and added seven new ones based on the interview findings, resulting in a 38‐item PREM.ConclusionsThis study demonstrates how extensive service user involvement can inform PREM development.Patient or Public ContributionPatients were involved as active members of the research team and as research participants to co‐produce and validate a PREM for IBD services. In Stage 1, eight expert service users (‘the expert group’) reduced candidate items for the PREM through a voting exercise and suggested new items. During Stage 2, 18 previously uninvolved people with IBD (the ‘think aloud’ participants) assessed the validity of the candidate items in ‘Think Aloud’ interviews as research participants. In Stage 3, the expert group removed, changed and added items based on the interview findings to produce a final version of the 38‐item PREM. This study shows how service user involvement can meaningfully inform PREM development.