Perspectives on community-based system change for people living with persistent pain: insights from developing the "Rethinking Pain service".

In this perspective article we advocate community-based system change for people living with persistent pain. Our view is that greater use of the voluntary and community sector, in partnership with the clinical sector, creates the conditions for a "whole person" approach to pain management, leading to greater personalised care for adults living with long-term pain whilst having the potential to ease some of the pressures on General Practitioners and other clinical services. We advocate pain care that is socially connected, meaningful within socio-cultural contexts and aligned with the principles of salutogenesis. We provide an example of a UK National Health Service (NHS) commissioned pain service called "Rethinking Pain" that operationalises this perspective. Led by the voluntary and community sector, Rethinking Pain works in partnership with the clinical sector to provide a central holistic pathway of care for people experiencing persistent pain. This is the first time that this model of care has been commissioned for persistent pain in this area of England. The Rethinking Pain service is underpinned by core values to work with people to manage their pain holistically. The Rethinking Pain team proactively engage with people in the community, actively approaching and engaging those who experience the biggest health inequalities. In this article we provide an overview of the context of pain services in the UK, the rationale and supporting evidence for community-based system change, and the context, pathway, values, goals, and aspirations of the Rethinking Pain service.

International, multi-disciplinary, cross-section study of pain knowledge and attitudes in nursing, midwifery and allied health professions students.

BACKGROUND: Persistent pain is a highly prevalent, global cause of disability. Research suggests that many healthcare professionals are not well equipped to manage pain, and this may be attributable at least in part to undergraduate education. The primary aim of this study was to quantify and compare first and final year nursing, midwifery and allied health professional (NMAHP) students' pain related knowledge and attitudes. The secondary aim was to explore what factors influence students' pain related knowledge and attitudes. METHODS: In this cross-sectional study, 1154 first and final year healthcare students, from 12 universities in five different countries completed the Revised Neurophysiology of Pain Quiz (RNPQ) [knowledge] and the Health Care Providers Pain and Impairment Relationship Scale (HC-PAIRS) [attitudes]. RESULTS: Physiotherapy was the only student group with statistically and clinically improved pain related knowledge [mean difference, 95% CI] (3.4, 3.0 to 3.9, p = 0.01) and attitudes (-17.2, -19.2 to 15.2, p = 0.01) between first and final year. Pain education teaching varied considerably from course to course (0 to 40 h), with greater levels of pain related knowledge and attitudes associated with higher volumes of pain specific teaching. CONCLUSIONS: There was little difference in pain knowledge and attitudes between all first and final year NMAHP students other than physiotherapy. This suggests that for most NMAHP disciplines, undergraduate teaching has little or no impact on students' understanding of pain. There is an urgent need to enhance pain education provision at the undergraduate level in NMAHPs. TRIAL REGISTRATION: The study protocol was prospectively registered at ClinicalTrials.Gov NCT03522857 .

A Descriptive Cohort Study of Adolescent and Young Adult Decedents Known to an Australian Comprehensive Cancer Center.

In Australia, cancer is the second leading cause of death in adolescents and young adults (AYA). In an audit of 76 AYA decedents known to a comprehensive cancer center, most were male (63%), and most had a parent as primary carer (78%). Median age at diagnosis was 21 years (range: 15-27). Median time from diagnosis to first palliative care consultation was 9 months, and from first palliative care review to death, 4 months. Location of death was hospital (41%), home (24%), and palliative care unit (16%). Eleven (65%) of 17 patients who wished to die at home achieved this.

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

Adolescents and young adults (aged 15-25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016-17 and 2019-20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Models of care for adolescent and young adult cancer programs.

This review draws on the experience of adolescent and young adult (AYA) cancer clinicians from Australia, the United States, and the United Kingdom to summarize common aspects of models of care implemented in their countries. The principles underpinning these models include patient- and family-focused care informed by an understanding of normal AYA development, enhancing existing adult or pediatric cancer services to meet the needs of AYA, and promoting collaboration between pediatric and adult oncologists. Common elements of AYA cancer care include establishing an AYA multidisciplinary team that integrates medical and psychosocial care, efforts to centralize complex care, providing access and equity for all AYA, promoting clinical trials, and helping facilitate transition to healthy survivorship. Several organizational approaches are described, noting that local program development depends on resources, infrastructure, and assessment of unmet needs within the region. The development of national networks provides opportunities for shared learning and approaches to evaluation.

A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools.

OBJECTIVE: Age-based screening tools and assessment measures are crucial to the provision of best practice care for adolescent and young adult (AYA) cancer patients. Unfortunately, there are limited psychosocial tools developed for this age group and pediatric or adult measures are often distributed with the assumption that they are "close enough." We describe a collaborative Australian project that strives to improve what currently exists for the psychosocial assessment of and planning for the 15-25-year-old age group. METHOD: Using the National Comprehensive Cancer Network's Distress Thermometer and the HEADSS Assessment as a foundation, the tools were developed in consultation with Australia's leading AYA clinicians, AYAs currently undergoing medical treatment, and a group of AYA survivors through a process of discussion groups and clinical interviews. RESULTS: The result is the first available AYA-specific screening tool, care plan pro forma, and psychosocial assessment measure developed for use within the oncology sector. These new tools will assist clinicians working with this population group to support psychosocial coping during active treatment and promote healthy post-treatment survivorship. SIGNIFICANCE OF RESULTS: Over time, further validation procedures will add to the veracity of the measures. Until then, these measures represent the best available in Australia. They highlight a clinically recognized minimum standard of care that all young cancer patients, regardless of treatment location, have the right to receive.

Music's relevance for adolescents and young adults with cancer: a constructivist research approach.

PURPOSE: Music is one of the most widely used activities amongst young people, significant in personal and group identity, motivation, physical release, and emotional support. Adolescents and young adults with cancer (AYA) require specialized care because of intensified challenges related to developmental vulnerability, treatment toxicity effects, and slower improvements in survival rates compared to other age groups. To advance effective supportive care for AYA, understanding their thoughts about music is necessary. This study examines AYAs' perspectives about music's role in their lives. METHODS: A constructivist research approach with grounded theory design was applied. Twelve people, 15 to 25 years old, known to onTrac@PeterMac Victorian Adolescent & Young Adult Cancer Service, participated. Respondents completed a brief music demographic questionnaire and participated in a semi-structured interview. Qualitative inter-rater reliability was integrated. RESULTS: Participants mostly reported music's calming, supportive, and relaxing effects, which alleviated hardship associated with their cancer diagnoses. Themes encompassed: music backgrounds, changed "musicking", endurance and adjustment, time with music therapists, and wisdom. Music provided supportive messages, enabled personal and shared understandings about cancer's effects, and elicited helpful physical, emotional, and imagery states. Music therapy could also promote normalized and supportive connections with others. A musician, however, struggled to get music "back" post-treatment. Supportive music-based strategies were recommended for other AYA and their health care providers. CONCLUSIONS: Music can signify and creatively enable AYAs' hope, endurance, identity development, and adjustment through cancer treatment and post-treatment phases. Health professionals are encouraged to support AYAs' music-based self-care and "normalized" activities.

Information provided to patients undergoing gastroscopy procedures.

This study aimed to investigate the information provided to patients undergoing gastroscopy procedures in Northern Ireland. Questionnaires were developed by the authors and were completed by 402 patients (RR = 43.8%) and 62 nurses (RR = 75.6%). Patients received most of the procedural information from nurses, and they recognized the importance of providing sensory information. Patients were generally satisfied with the information provided. There is clear evidence of fragmented care, and major changes are required to ensure that patients receive holistic information that includes procedural and sensory aspects. Nurses and doctors must realize that their role in information giving is to ensure that comprehensive information is provided by the appropriate professional at the appropriate time.