The importance of developing palliative care quality indicators for the prison setting: why now, and next steps.

Palliative care is increasingly important in the prison setting, but information about the quality and accessibility of this care is extremely limited. Developing and implementing standardised quality indicators will provide transparency, accountability, and a platform for quality improvement at both local and national levels.

Acceptability of a virtual prostate cancer survivorship care model in regional Australia: A qualitative exploratory study.

OBJECTIVE: To assess the acceptability of a nurse-led prostate cancer survivorship intervention adapted for virtual delivery and tailored to post-surgical care, in a regional Australian hospital and health service. METHODS: A qualitative exploratory study using the Theoretical Framework of Acceptability (TFA). RESULTS: Twenty-two participants took part in a semistructured interview comprising men who had completed the program (n = 16) and health professionals/service stakeholders involved in program delivery (n = 6). Acceptability of this virtual prostate cancer survivorship care program was very high across all constructs of the TFA, from the perspectives of both program recipients and those delivering the program. The quality of care received was seen as superior to what men had experienced previously (burden, opportunity costs). The time afforded by the regularly scheduled video-consultations allowed men to come to terms with the recovery process in their own time (self-efficacy), and provided an ongoing sense of support and access to care outside the consultation (ethicality). Clinically, the program improved care co-ordination, expedited identification of survivorship care needs, and met service priorities of providing quality care close to home (burden, perceived effectiveness). CONCLUSIONS: Findings from this study suggest virtual post-surgical care delivered via videoconferencing is highly acceptable to prostate cancer survivors in a regional setting. Future research exploring virtual program implementation at scale and long-term patient and service outcomes is warranted.

Palliative care needs and experiences of people in prison: A systematic review and meta-synthesis.

BACKGROUND: Globally, the prison population is growing and ageing, as is the need for palliative care. Yet, little is known about how people in prison perceive palliative care provision in this setting. AIMS: To identify the: (i) perceptions of palliative care provision and dying in custody by people in prison; and (ii) perceived barriers and facilitators of person-centred palliative care provision in prison. DESIGN: A systematic review and meta-synthesis was registered and undertaken in accordance with the reporting guidelines. DATA SOURCES: Keywords and MeSH headings encompassing (i) palliative care, end-of-life care, death; and (ii) prison; were used to search Pubmed, Medline, CINAHL, PsycINFO, Web of Science, CINCH and ProQuest Central. Articles published in English, from high income countries, and containing qualitative data exploring perceptions of people in prison of palliative care in custody were included. Findings were reporting using the ENTREQ guidelines. FINDINGS: Of the 2193 articles identified, 12 were included. Experiences of people in prison regarding palliative care related to two themes: (1) expectations versus experiences of palliative care; and (2) prison context complicates access to and provision of palliative care. People in prison with palliative care needs want to feel safe, cared for, and acknowledged as they face an expected death. The prison environment can severely restrict access to palliative care, leaving people in prison feeling isolated and powerless. CONCLUSIONS: People in prison expect to receive high-quality palliative care, but their experiences often do not match their expectations. Numerous structural and organisational challenges complicate the provision of palliative care in prisons, limiting accessibility of care.

Virtual models of care for people with palliative care needs living in their own home: A systematic meta-review and narrative synthesis.

BACKGROUND: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted in calls for 'accessible and flexible' models of care that are 'responsive' to peoples' changing palliative care needs. Digital health technologies provide opportunities to meet these requirements 24-h a day. AIM: To identify digital health technologies that have been evaluated for supporting timely assessment and management of people living at home with palliative care needs and/or their carer(s), and the evidence-base for each. DESIGN: A systematic review of systematic reviews ('meta-review'). Systematic reviews evaluating evidence for virtual models of palliative or end-of-life care using one or more digital health technologies were included. Systematic reviews were evaluated using the Risk of Bias Tool for Systematic Reviews. A narrative approach was used to synthesise results. DATA SOURCES: Medline, Embase, Web of Science, CINAHL and Cochrane Database of systematic reviews were searched for English-language reviews published between 2015 and 2020. RESULTS: The search yielded 2266 articles, of which 12 systematic reviews met criteria. Sixteen reviews were included in total, after four reviews were found via handsearching. Other than scheduled telehealth, video-conferencing, or after-hours telephone support, little evidence was found for digital health technologies used to deliver virtual models of palliative care. CONCLUSIONS: There are opportunities to test new models of virtual care, beyond telehealth and/or video conferencing, such as 24-h command centres, and rapid response teams. SYSTEMATIC REVIEW REGISTRATION NUMBER: Prospero CRD42020200266.

Quality of online self-management resources for adults living with primary brain cancer, and their carers: a systematic environmental scan.

BACKGROUND: A primary brain cancer diagnosis is a distressing, life changing event. It adversely affects the quality of life for the person living with brain cancer and their families ('carers'). Timely access to evidence-based information is critical to enabling people living with brain cancer, and their carers, to self-manage the devastating impacts of this disease. METHOD: A systematic environmental scan of web-based resources. A depersonalised search for online English-language resources published from 2009 to December 2019 and designed for adults (> 25 years of age), living with primary brain cancer, was undertaken using the Google search engine. The online information was classified according to: 1) the step on the cancer care continuum; 2) self-management domains (PRISMS taxonomy); 3) basic information disclosure (Silberg criteria); 4) independent quality verification (HonCode); 5) reliability of disease and treatment information (DISCERN Sections 1 and 2); and readability (Flesch-Kincaid reading grade). RESULTS: A total of 119 online resources were identified, most originating in England (n = 49); Australia (n = 27); or the USA (n = 27). The majority of resources related to active treatment (n = 76), without addressing recurrence (n = 3), survivorship (n = 1) or palliative care needs (n = 13). Few online resources directly provided self-management advice for adults living with brain cancer or their carers. Just over a fifth (n = 26, 22%) were underpinned by verifiable evidence. Only one quarter of organisations producing resources were HonCode certified (n = 9, 24%). The median resource reliability as measured by Section 1, DISCERN tool, was 56%. A median of 8.8 years of education was required to understand these online resources. CONCLUSIONS: More targeted online information is needed to provide people affected by brain cancer with practical self-management advice. Resources need to better address patient and carer needs related to: rehabilitation, managing behavioural changes, survivorship and living with uncertainty; recurrence; and transition to palliative care. Developing online resources that don't require a high level of literacy and/or cognition are also required.

Halitosis, oral health and quality of life during treatment with Invisalign(®) and the effect of a low-dose chlorhexidine solution.

AIM: This study examined how halitosis, oral dryness and general oral health were impacted during treatment with the Invisalign(®) system. Furthermore, the effect of a lowdose chlorhexidine solution (CHX) was evaluated. PATIENTS AND METHODS: Thirtyone patients with good periodontal health participated in this crossover study and were divided into two groups (group 1: CHX/no CHX, group 2: no CHX/CHX). The following parameters were recorded during the first 8 months of Invisalign(®) treatment: stimulated saliva flow rate, organoleptic index, tongue coating index, measurement of the oral volatile sulfur compound level (ppb), modified gingival and plaque index and bleeding on probing index. Professional oral cleaning was performed at the beginning of each period lasting 3 months. The patients received a questionnaire at the first, third, fourth, sixth and eighth control visits. RESULTS: The very low volatile sulfur compound level was significantly decreased by CHX (0.06%) during the first examination period (p = 0.02), i.e. for the first group of patients only. Neither halitosis, nor oral dryness, nor high plaque or gingival index measurements were observed. Oral health-related quality of life was hardly influenced by wearing aligners and oral hygiene habits were very good. CONCLUSIONS: This study provides evidence that Invisalign(®) treatment is characterized by only minimal impairment of overall oral health and the associated quality of life. Consequently, it appears unnecessary to recommend the general adjunctive use of a low-dose chlorhexidine mouthwash during treatment with Invisalign(®).