Is there a role for citizen science in death and dying research?

The COVID-19 pandemic has brought conversations about death and dying to the fore in a way not experienced for generations. This raises questions around perceptions of death and dying; the role of healthcare and the community in care; and the use of digital media for information and support. Public engagement can provoke a two-way conversation between researchers and the public and includes techniques that can engage the community not only with the topic but also in research. This perspective article considers the potential role of citizen science in death and dying research, including considerations around its potential benefits and constraints.

'I think it affects every aspect of my life, really': Cancer survivors' experience of living with chronic pain after curative cancer treatment in England, UK.

AIM: To explore cancer survivors' experiences of living with chronic pain after curative cancer treatment in England, UK. METHODS: A qualitative study using telephone interviews with adult cancer survivors experiencing chronic pain after curative cancer treatment. Interview data was analysed using a reflexive thematic approach [1-3]. FINDINGS: Nineteen participants: 14 female, 5 male, mean age 62.4 years, 1.5-48 years since cancer diagnosis, eight tumour groups represented. Six participants (31.6%) developed chronic pain more than ten years after completing cancer treatment (range 0-25 years). Five themes were generated which highlighted the experience of chronic pain after cancer treatment for cancer survivors: 1) 'Hear me… believe me…. Please'. Survivors felt that they had not been listened to when they tried to talk about their chronic pain after cancer treatment, nor at times, believed. 2) 'Expectation versus reality'. Survivors had anticipated returning to pre cancer quality of life yet living in chronic pain prevented them from doing so. 3) 'They don't understand…. We don't understand'. Cancer survivors did not feel informed or prepared for the risk or reality of chronic pain after cancer treatment and this compounded the difficulties of coping with and managing their pain. They felt health care professionals lacked knowledge and understanding of chronic pain after cancer. 4) 'Negotiating the maze'. Cancer survivors encountered unclear and limited pathways for support, often bouncing from one support team to another. Identifying and accessing services was a challenge, and the responsibility of this was often left to the survivor. 5) 'Validate my pain, validate me'. Palpable relief and benefit was felt when health care professionals diagnosed and acknowledged their chronic pain after cancer treatment. CONCLUSIONS: Cancer survivors can feel ill prepared for the risk of chronic pain after cancer treatment and can experience challenges accessing support from healthcare professionals and clinical services.

Sensory training system for use at home by people with complex regional pain syndrome in England: protocol for a proof-of-concept study.

INTRODUCTION: Complex regional pain syndrome (CRPS) is a disabling and distressing chronic pain condition characterised by a range of sensory, motor, autonomic and trophic symptoms. UK guidelines recommend therapy interventions to help normalise touch perception through self-administered tactile and thermal desensitisation activities. Interventions have been developed, aiming to help individuals broaden their sensory experience, thereby relieving chronic pain. However, therapy-led interventions often experience practical constraints and poor adherence. In response, a sensory training system (STS) device has been designed for unsupervised independent home-use. METHODS: This proof-of-concept study aims to explore whether people with CRPS use the device at home for 30 minutes a day for 30 days. Secondary aims are to determine whether the STS device will change tactile acuity and perceived levels of pain intensity, pain interference, sensitivity or feelings towards the affected limb. We will seek to recruit 20 eligible participants. Participants will be asked to measure tactile acuity using a two-point discrimination assessment, complete an online questionnaire before and after use of the device and complete a daily diary. On completion of the 30-day use, participants will be invited to take part in a semi-structured interview to explore their experiences of using the device. ANALYSIS: Pain intensity and pain interference will be scored using the online Assessment Center Scoring Service or using the look-up table in the PROMIS scoring manual. The remaining questionnaire data, including tactile acuity results, and device-use data, including frequency and duration of use, will be analysed using descriptive statistics. Qualitative data will be thematically analysed. ETHICS AND DISSEMINATION: London-Stanmore Research Ethics Committee provided a favourable opinion on 19 April 2021 (ref 21/LO/0200). The NHS Health Research Authority, UK, approved this study on 7 June 2021. Dissemination will include peer-reviewed publications, presentations at conferences, social media and reports to the funder and patient charities. TRIAL REGISTRATION NUMBER: ISRCTN89099843.

Resilience in patients with complex regional pain syndrome 1-a cross-sectional analysis of patients participating in a cross-sectional cohort study.

OBJECTIVE: To assess the degree of resilience in patients with complex regional pain syndrome (CRPS) 1, to explore the relationship between resilience and patient-related outcome measurements and to describe a pattern of clinical manifestations associated with low resilience. METHODS: This study presents a cross-sectional analysis of baseline information collected from patients enrolled in a single center study between February 2019 and June 2021. Participants were recruited from the outpatient clinic of the Department of Physical Medicine & Rheumatology of the Balgrist University Hospital, Zurich, Switzerland. We used linear regression analysis to explore association of resilience with patient reported outcomes at baseline. Furthermore, we explored the impact of significant variables on the low degree resilience using logistic regression analysis. RESULTS: Seventy-one patients (females 90.1%, mean age 51.2 ± 12.9 years) were enrolled. There was no association between CRPS severity and the level of resilience. Quality of Life was positively correlated with resilience, as was pain self-efficacy. Pain catastrophizing was inversely correlated with the level of resilience. We observed a significant inverse association between anxiety, depression and fatigue and the level of resilience. The proportion of patients with a low resilience increased with higher level of anxiety, depression and fatigue on the PROMIS-29, without reaching statistical significance. CONCLUSION: Resilience seems to be an independent factor in CRPS 1 and is associated with relevant parameters of the condition. Therefore, caretakers may screen the current resilience status of CRPS 1 patients to offer a supplementary treatment approach. Whether specific resilience training modifies CRPS 1 course, requires further investigations.

Optimising management of complex regional pain syndrome to improve clinical outcomes throughout the therapy care pathway in England: Protocol for a qualitative interview and observational study with patients and clinicians.

INTRODUCTION: Complex Regional Pain Syndrome (CRPS) is a disabling and distressing chronic pain condition characterised by a range of sensory, motor, autonomic and trophic symptoms. Guidelines recommend early referral for therapies that promote movement of the painful limb. However, evidence suggests a lack of defined therapy pathways for CRPS. AIMS: The current study aims to explore CRPS therapy management in centres of excellence in England, and outside of these settings, to understand what facilitates and hinders best practice. The overall aim is to develop a draft stratified package of care to expedite patient access to optimal CRPS therapy across the management pathway. METHODS AND ANALYSIS: Semi-structured interviews will be conducted with therapists working in CRPS centres of excellence and with therapists in other settings. Observations of therapy interventions in CRPS centres of excellence and interviews with patients who have received this care, will also help to identify potential key care package components. Interview data will be analysed using thematic analysis, mapped to the Theoretical Domains Framework (TDF), and Intervention Mapping Adapt (IMA) framework. Observations will be described and documented using the TDF headings. CONCLUSION: A triangulation protocol for qualitative health research will be used to integrate all data. Online stakeholder events will be held using consensus methods to agree a draft package of care for future implementation following further refinement, testing and evaluation. CLINICAL TRIAL REGISTRATION: The trial was registered with ISRCTN registry on 24 February 2022 (ISRCTN16917807).

Delphi study to define core clinical outcomes for inclusion in a complex regional pain syndrome international research registry and data bank.

ABSTRACT: Complex regional pain syndrome (CRPS) clinical trials have historically captured a diverse range of outcomes. A minimum set of CRPS patient-reported outcomes has been agreed for inclusion in a future CRPS international clinical research registry and data bank. This study aimed to identify a complementary set of core clinical outcomes. Clinicians and researchers from the international CRPS community informed the content of a 2-round electronic Delphi study. Participation was invited from members of the International Association for the Study of Pain CRPS Special Interest Group and the International Research Consortium for CRPS. In round 1, participants rated the relevance of 59 clinical outcomes in relation to the question "What is the clinical presentation and course of CRPS, and what factors influence it?" (1 = not relevant and 9 = highly relevant). In round 2, participants rerated each outcome in the light of the round 1 median scores. The criterion for consensus was median score ≥7, agreed by 75% of respondents. The core study team considered the feasibility of data collection of each identified outcome in agreeing final selections. Sixty respondents completed both survey rounds, with responses broadly consistent across professions. Nine outcomes met the consensus criterion. Final outcomes recommended for inclusion in the core clinical set were record of medications, presence of posttraumatic stress disorder, extent of allodynia, and skin temperature difference between limbs. Study findings provide robust recommendations for core clinical outcome data fields in the future CPRS international clinical research registry. Alongside patient-reported outcomes, these data will enable a better understanding of CRPS.

The experience of persistent pain in adult cancer survivors: A qualitative evidence synthesis.

OBJECTIVE: This qualitative evidence synthesis aimed to identify, review and synthesise qualitative research describing the experience of persistent pain in adult cancer survivors. METHODS: A systematic literature search was conducted between December 2007 and June 2019. Data synthesis followed Thomas and Harden's (2008) method of thematic synthesis. RESULTS: Four studies were identified, together incorporating findings from 52 female breast cancer survivors. Six themes were generated as follows: (a) interwoven relationship between experience of cancer and persistent pain, (b) lack of preparedness and support for persistent pain, (c) physical impact of persistent pain, (d) employing coping strategies, (e) emotional experience of persistent pain and (f) conceptualisation of persistent pain. CONCLUSIONS: Persistent pain is intrinsically interwoven with women's experiences of cancer. Persistent pain was unexpected, and women did not feel supported. Women need more information about persistent pain after cancer treatment and support with self-management of pain. Ways to best support cancer survivors with persistent pain need exploration and a review of currently available services is required. More research is needed to understand the experiences of men and other cancer groups.

Complex regional pain syndrome: An international survey of clinical practice.

BACKGROUND: Published guidelines promote best practice in complex regional pain syndrome (CRPS) treatment and management; however, these recommendations are not always applied in clinical practice. Understanding existing care internationally will help inform future patient and health professional service delivery, education initiatives and content of clinical guidelines. METHODS: An e-survey was conducted in order to gain an insight into routine CRPS clinical practice. Health professionals and academics, from the field of CRPS, were recruited from an international population. Quantitative and qualitative data were elicited. Data were mapped onto a framework to identify macro-regional factors. RESULTS: Of the 260 survey respondents, 96% (n = 241) provided clinical care for people with CRPS, with academics not involved in patient care also responding. Half of respondents expressed difficulty in recognizing the symptoms of CRPS but treatment aims corresponded with published guidelines. However, a lack of resources and fragmented care were reported as barriers to early intervention. Service constraints were most frequently reported by European respondents. Five themes emerged from the qualitative data: the benefit of interdisciplinary working; the importance of symptom management; need for early diagnosis and intervention; establishing a collaborative partnership with patients; the value of education for patients and health professionals. CONCLUSIONS: Our data suggest that more work is required to raise awareness of the Budapest CRPS diagnostic criteria so as to promote early diagnosis and intervention. Future work to optimize clinical effectiveness should consider enhancing interdisciplinary service delivery that encourages a collaborative patient/clinician partnership; includes excellent patient education; and addresses modifiable patient-related factors. SIGNIFICANCE: Health professionals expressed some level of difficulty recognizing the signs and symptoms of CRPS despite the majority of health professionals having had clinical experience exceeding 6 years in the field of CRPS. More work is required to raise awareness amongst clinicians of the Budapest CRPS diagnostic criteria so as to promote early diagnosis and intervention Health professionals' treatment aims reflected the current clinical guidelines however, a lack of resources and fragmented care were frequently cited as barriers to achieving these.

An exploration of the experiences of women treated with radiotherapy for breast cancer: Learning from recent and historical cohorts to identify enduring needs.

PURPOSE: Recent decades have seen improvements in UK breast cancer services and treatments. Despite this, it is recognised that a range of patients' psychological and emotional needs remain unmet, both at the time of treatment and into survivorship. Using data from two distinct cohorts of women: those treated with radiotherapy for breast cancer historically, and women treated more recently, this study sought to identify and explore those needs and concerns that have continued to persist, despite advances in treatment and care. METHOD: Data from N = 13 semi-structured interviews were analysed using Interpretative Phenomenological Analysis. An heuristic framework was applied to extract themes common to both participant cohorts. RESULTS: Participants' data evidenced an enduring vulnerability amongst cancer patients that has not diminished with new treatment pathways. Themes common to both cohorts highlighted the ongoing importance of personal factors such as resilience, and strategies to help retain a sense of normality. Extrinsic support was important too, especially high quality communication by healthcare professionals and having access to ongoing emotional support from others, particularly when active treatment ends. Participants' suggestions for future service development included the provision of ongoing continuity of care and greater access to emotional support services. CONCLUSIONS: This study highlights the psychological needs and concerns of breast cancer patients that have persisted, despite the many advances in patient-centred care. Findings are of value to nurses and other healthcare professionals in highlighting the ongoing importance of recognising, acknowledging and addressing patients' concerns and needs, even within current cancer care pathways.

Evaluating a new methodology for providing individualized feedback in healthcare on quality of life and its importance, using the WHOQOL-BREF in a community population.

PURPOSE: We conducted an evaluation to find out how a novel quality of life (QoL) intervention containing guided individualized feedback was appraised. The importance of QoL was matched with QoL assessment for each subjective dimension, using graphical feedback. We examined whether this information was acceptable, feasible and valued beyond the clinical context, among the community. METHODS: Using a mixed-methods cross-sectional design, the intervention was piloted with 129 participants from communities and registered in primary care. WHOQOL-BREF and WHOQOL Importance scores were graphically matched by dimension. Results were inspected and interpreted with directed guidance to identify good and poor QoL. We report the post-intervention evaluation of feedback, including qualitative themes. Follow-up interviews among those expecting feedback to be helpful explored potential self-management and healthcare uses. RESULTS: After feedback, 65 % reported changes in thoughts and perceptions of QoL, often describing insights as self-affirming. Goals or expectations changed for 34 %, and motivation to change was reported. Over 50 % evaluated the feedback as helpful in the short term or for the future. Follow-up interviews endorsed the value of the feedback and its usefulness in sharing with a healthcare professional (92 %), suggesting it would facilitate professionals' understandings of patients and enable health advice to be targeted. CONCLUSIONS: The benefits of using this novel feedback can be extended to the general population, as directed guidance aids interpretation, thereby saving health service costs. This complex pilot intervention needs testing in a blinded fully randomized controlled trial. Beyond independent self-management, graphs could be used during clinical decision-making.

Using guided individualised feedback to review self-reported quality of life in health and its importance.

This pilot study investigated the effects of providing guided, individualised feedback on subjective quality of life (QoL), using results from the multidimensional WHOQOL-BREF profile. Participants (n = 129; 85 chronically ill) were recruited in the community, and primary care. They were randomised to receive written or verbal guidance on interpreting a new graphical summary profile, which simultaneously presented (a) their individual self-ratings of QoL and (b) the importance attributed to each QoL dimension. Before and after feedback, participants completed health status, subjective QoL, QoL Importance, goal-oriented QoL and mood measures. Receiving individualised feedback was associated with increased psychological QoL, with modest effect size. No effects were found for physical, social or environmental QoL or QoL importance, health status, mood or goal-oriented QoL. There were no differences between modes of delivering guidance, indicating equal effectiveness. Chronic illness participants reported poorer QoL, moved more slowly towards their QoL goals, and had larger differences between core QoL and QoL Importance than healthy participants. Guided individualised empirical feedback about QoL judgements could be used to promote psychological well-being. Although professional interpretation of feedback is unnecessary, if shared, patients' profiled WHOQOL information could support self-monitoring, self-management and clinical decision-making.