Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.
Background Little is known about the prevalence and best management of needle fear in adults with chronic disease, who may experience frequent and long-term exposure to needles for lifesaving therapies such as renal dialysis and cancer treatment. Identifying interventions that assist in management of needle fear and associated distress is essential to support these patients with repeated needle and cannula exposure. Method We followed the PRISMA methodology for scoping reviews and systematically searched PsychINFO, PubMed (MEDLINE), ProQuest, Embase and grey literature and reference lists between 1989 and October 2020 for articles related to needle discomfort, distress, anxiety, fear or phobia. The following chronic diseases were included: arthritis, asthma, chronic back pain, cancer, cardiovascular disease, chronic obstructive pulmonary disease, diabetes, and mental illness, or kidney failure. Literature concerning dentistry, vaccination, intravenous drug users and paediatric populations were excluded. Results We identified 32 papers reporting prevalence (n = 24), management (n = 5) or both (n = 3). Needle fear prevalence varied in disease cohorts: 17–52% (cancer), 25–47% (chronic kidney disease) and 0.2–80% (diabetes). Assessment methods varied across studies. Management strategies had poor evidence-base, but included needle-specific education, decorated devices, cognitive-behavioural stress management techniques, distraction, and changing the therapy environment or modality. Conclusion Although needle fear is common there is a paucity of evidence regarding interventions to address it among adults living with chronic disease. This scoping review has highlighted the need for improved identification of needle fear in adults and development of interventions are required for these cohorts.
Background Needle-related distress is a common yet poorly recognised and managed problem among haemodialysis (HD) patients. The aim of this pilot study is to test the feasibility and acceptability of the INJECT Intervention—an innovative psychology-based intervention to empower patients to self-manage needle distress with the support of dialysis nurses. Methods This investigator-initiated, single-arm, non-randomised feasibility study will take place in a large dialysis service in Adelaide, Australia. Participants will include patients aged ≥ 18 years, commencing or already receiving maintenance HD, recruited through dialysis physicians and nursing staff as individuals believed to be at risk of needle distress. They will be screened for inclusion using the Dialysis Fear of Injection Questionnaire (DFIQ) and enrolled into the study if the score is ≥ 2. The multi-pronged intervention encompasses (i) psychologist review, (ii) patient self-management program and (iii) nursing education program. The primary aim is to evaluate feasibility and acceptability of the intervention from patient and dialysis nurse perspectives, including recruitment, retention, engagement with the intervention and completion. Secondary exploratory outcomes will assess suitability of various tools for measuring needle distress, evaluate acceptability of the nursing education program and measure cannulation-related trauma and vascular access outcomes. Conclusion The results will inform the protocol for larger trials addressing needle distress in HD patients. Trial registration Australian New Zealand Clinical Trials Registry (ANZCTR): ACTRN12621000229875, approved 4 April 2021, https://www.anzctr.org.au/.
Research investigating health benefits from household human–animal bonds has focused mostly on bonds with companion dogs, cats, and horses. Wellbeing benefits associated with other companion animal species such as birds, fish, and reptiles are described and anecdotally reported, but there is little empirical literature supporting this. The literature suggests that health benefits of companion animals are predicated on human perceptions of the animal rather than the animal’s species. Therefore, relationships with non-conventional companion animals of diverse species may benefit the health of their human guardians as do dogs, cats, and horses. This narrative review summarizes the current literature exploring perceived health benefits gained from non-conventional companion animals. Searches were conducted for published literature and grey literature up to October 2022 across PsycINFO and PubMed databases, and Newsbank media database for commercial media publications. Nineteen studies and 10 media articles were included in the review. Gaps in the literature include a lack of rigorous research to investigate the health benefits of non-conventional companion animals. Non-conventional companion animals may benefit their guardians by providing social support through acting as attachment figures, facilitating social opportunities and daily routines, fulfilling cognitive needs, and recreating restorative capacities of mindfully observing natural landscapes. Further high-quality research into the human-non-conventional companion animal bond is warranted.
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