BackgroundMultiple myeloma is an incurable haematological cancer that affects physical, psychological and social domains of quality of life (QOL). Treatment decisions are increasingly guided by QOL issues, creating a need to monitor QOL within clinical practice. The development of myeloma-specific QOL questionnaires has been limited by a paucity of research to fully characterise QOL in this group. Aims of the present study are to (1) explore the issues important to QOL from the perspective of people with multiple myeloma, and (2) explore the views of patients and clinical staff on existing QOL questionnaires and their use in clinical practice.MethodsThe ‘Issues Interviews’ were semi-structured qualitative interviews to explore the issues important to QOL in a purposive sample of myeloma patients (n = 20). The ‘Questionnaire Interviews’ were semi-structured qualitative interviews in a separate purposive sample of myeloma patients (n = 20) to explore views on existing QOL questionnaires and their clinical use. Two patient focus groups (n = 7, n = 4) and a focus group of clinical staff (n = 6) complemented the semi-structured interviews. Thematic content analysis resulted in the development of a theoretical model of QOL in myeloma.ResultsMain themes important to QOL were Biological Status, Treatment Factors, Symptoms Status, Activity & Participation, Emotional Status, Support Factors, Expectations, Adaptation & Coping and Spirituality. Symptoms had an indirect effect on QOL, only affecting overall QOL if they impacted upon Activity & Participation, Emotional Status or Support Factors. This indirect relationship has implications for the design of QOL questionnaires, which often focus on symptom status. Health-service factors emerged as important but are often absent from QOL questionnaires. Sexual function was important to patients and difficult for clinicians to discuss, so inclusion in clinical QOL tools may flag hidden problems and facilitate better care. Patients and staff expressed preferences for questionnaires to be no more than 2 pages long and to include a mixture of structured and open questions to focus the goals of care on what is most important to patients.ConclusionExisting QOL questionnaires developed and validated for use in myeloma do not capture all that is important to patients and may not be well suited to clinical use.

Background:Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking.Aim:To determine an optimal user-involvement model for palliative care research.Design:We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings.Setting/participants:Participants involved in palliative care research were invited to a global research institute, UK.Results:A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility.Conclusion:For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research.

Plain English summaryPatient and public involvement (PPI) is increasingly recognised as important in research. Most PPI takes place face-to-face, but this can be difficult for people who are unwell or have caring responsibilities. As these challenges are particularly common in palliative care and rehabilitation research, we developed an online forum for PPI: www.csipublicinvolvement.co.uk. In this study, we explored how well the online forum worked, if it is a suitable method for PPI, and how PPI members and researchers reacted to using it. We used an existing theory about online interventions to help choose the ‘right’ questions to ask participants. We invited PPI members and researchers who had used the online forum to participate in focus groups, and identified the most important themes discussed. Within this study, PPI members have helped with the interview questions, analysis, and write up. Overall, four PPI members and five researchers participated in the focus groups. Participants felt the online forum worked well and had multiple benefits. From the discussions, we identified four key questions to consider when developing online methods for PPI: how does the forum work, how does it engage people, how does it empower people, and what is the impact? Participants suggested the forum could be improved by being more PPI and less researcher focused. We conclude that when developing online methods of PPI, a functioning forum is not enough: it also needs to be engaging and empowering to have an impact. Future work can use these four domains when developing their own online PPI methods.AbstractBackgroundPatient and public involvement (PPI) in research is increasingly recognised as important. Most PPI activities take place face-to-face, yet this can be difficult for people with ill health or caring responsibilities, and may exclude people from hard-to-reach populations (e.g. living in vulnerable social circumstances and/or remote geographical locations). These challenges are particularly pertinent in palliative care and rehabilitation research where people often live with, or care for someone with, advanced illness. In response to this, we aimed to test the functionality, feasibility, and acceptability of an online forum for PPI for palliative care and rehabilitation research (www.csipublicinvolvement.co.uk).MethodsWe conducted separate focus groups with PPI members and researchers who had used the online forum. Data collection was underpinned by DeLone and Mclean’s model of information systems success. Focus groups were recorded, transcribed, and analysed using inductive thematic analysis. Dual coding by two authors ensured rigour, and attention was paid to divergent cases.ResultsFour PPI members and five researchers participated in the focus groups (two PPI focus groups, one researcher focus group). The online forum was perceived as functional, feasible, and acceptable. Our analysis identified four key questions to consider when developing online methods for PPI: (1) how does the forum work, (2) how does it engage...

Background Unfinished Nursing Care (UNC) concept, that express the condition when nurses are forced to delay or omit required nursing care, has been largely investigated as tasks left undone, missed care, and implicit rationing of nursing care. However, no summary of the available evidence regarding UNC antecedents has been published. The aim of this study is to identify and summarise antecedents of UNC as documented in primary studies to date. Methods A systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines was conducted. MEDLINE, CINAHL, SCOPUS, and PROSPERO databases were searched for quantitative studies reporting the relationships between antecedents and UNC published after 2004 up to 21 January 2020. The reference lists of secondary studies have been scrutinised to identify additional studies. Two reviewers independently identified studies and evaluated them for their eligibility and disagreements were resolved by the research team. The quality appraisal was based on the Joanna Briggs Institute Critical Appraisal tools, according to the study designs. A data extraction grid was piloted and then used to extract data. The antecedents that emerged were thematically categorised with an inductive approach. Results Fifty-eight studies were included; among them, 54 were cross-sectional, three were cohort studies, and one was a quasi-experimental study. They were conducted mainly in the United States and in hospital settings. The UNC antecedents have been investigated to date at the (a) unit (e.g., workloads, non-nursing tasks), (b) nurse (e.g., age, gender), and (c) patient levels (clinical instability). Conclusions At the unit level, it is highly recommended to provide an adequate staff level, strategies to deal with unpredictable workloads, and to promote good practice environments to reduce or minimise UNC. By contrast, at the nurse and patient levels, there were no clear trends regarding modifiable factors that could decrease the occurrence of UNC. The map of antecedents that emerged can be used to design interventional studies aimed at changing research from merely descriptive to that which evaluates the effectiveness of interventions.

Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study.

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Background: Public involvement is increasingly considered a prerequisite for high-quality research. However, involvement in palliative care is impeded by limited evidence on the best approaches for populations affected by life-limiting illness. Aim: To evaluate a strategy for public involvement in palliative care and rehabilitation research, to identify successful approaches and areas for improvement. Design: Co-produced qualitative evaluation using focus groups and interviews. Thematic analysis undertaken by research team comprising public contributors and researchers. Setting/participants: Researchers and public members from a palliative care and rehabilitation research institute, UK. Results: Seven public members and 19 researchers participated. Building and maintaining relationships, taking a flexible approach and finding the ‘right’ people were important for successful public involvement. Relationship building created a safe environment for discussing sensitive topics, although public members felt greater consideration of emotional support was needed. Flexibility supported involvement alongside unpredictable circumstances of chronic and life-limiting illness, and was facilitated by responsive communication, and opportunities for in-person and virtual involvement at a project- and institution-level. However, more opportunities for two-way feedback throughout projects was suggested. Finding the ‘right’ people was crucial given the diverse population served by palliative care, and participants suggested more care needed to be taken to identify public members with experience relevant to specific projects. Conclusion: Within palliative care research, it is important for involvement to focus on building and maintaining relationships, working flexibly, and identifying those with relevant experience. Taking a strategic approach and developing adequate infrastructure and networks can facilitate public involvement within this field.

Loss of skeletal muscle strength is a well-recognized feature of ageing and chronic obstructive pulmonary disease (COPD). Reductions in muscle size provide only a partial explanation for this loss of strength, and additional contributory factors remain undetermined. We hypothesized that reductions in skeletal muscle strength, as measured in the ankle dorsiflexor muscles, would be reduced with ageing and COPD as a result of changes in both size and composition of the tibialis anterior muscle. Twenty healthy young subjects, 18 healthy elderly subjects and 17 patients with COPD were studied. Ankle dorsiflexor muscle strength was assessed by maximal voluntary contraction (ADMVC) and 100 Hz supramaximal electrical stimulation of the peroneal nerve (100 HzAD). Tibialis anterior cross-sectional area (TACSA) and composition, as assessed by echo intensity (TAEI), were measured using ultrasonography. Despite a lack of differences in TACSA between groups, ADMVC and 100 HzAD were significantly reduced in COPD patients compared with both healthy elderly and healthy young subjects, when expressed as absolute values and when normalized to TACSA (P < 0.01). The TAEI was, however, higher in COPD patients compared with healthy elderly (P = 0.025) and healthy young subjects (P = 0.0008), suggesting increased levels of non-contractile tissue. Across all participants, ADMVC and 100 HzAD correlated positively with TACSA (r = 0.78, P < 0.0001) and negatively with TAEI (r = -0.46, P < 0.0005). The variance in 100 HzAD was best explained with a regression model incorporating TACSA, TAEI, age and COPD status (r(2) = 0.822, P = 0.001). These data demonstrate that the loss of skeletal muscle strength in COPD is related to changes in muscle composition, with infiltration of non-contractile tissue beyond that seen during normal ageing.