A patient-led, peer-to-peer qualitative study on the psychosocial relationship between young adults with inflammatory bowel disease and food.

BACKGROUND: Inflammatory bowel diseases (IBDs) are chronic gastrointestinal diseases that negatively affect the enjoyment of food and engagement in social and cultural gatherings. Such experiences may promote psychosocial challenges, an aspect of IBD often overlooked and under-supported in clinical settings and research. OBJECTIVES: This study explored the psychosocial experiences that young adults with IBD have with food via a qualitative patient-led research process. METHODS: Trained patient researchers conducted this study by engaging peers via semi-structured interviews and focus groups in a three-step co-design process. Participants (n = 9) identified the research topic (SET), explored the topic and identified emerging themes (COLLECT), refined themes and made recommendations for healthcare system change (REFLECT). RESULTS: Themes that emerged included: 'Experimenting with Food', 'Evolution Over Time', 'Diet Changes are Emotional' and 'Role of Stigma'. Participants identified the significance and frustrations of repeated testing and experimenting with food compatibility, and noted nuances in food relationships as they gain knowledge and experience over time. They emphasized the importance of maintaining a sense of hope throughout and wished to impart this to newly diagnosed patients. CONCLUSION: Participants experience numerous psychosocial challenges as they strive to manage their diet, noting gaps in support available from IBD practitioners. Participants made practical recommendations for healthcare system change to improve patient outcomes, highlighting the importance of sharing stories and collaboratively including patients in the development of new services and protocols. Authors recommend further research in this area to build a body of knowledge and support that helps IBD patients maintain hope while navigating challenges with food. PATIENT OR PUBLIC CONTRIBUTION: The first four authors on this paper were the lead researchers in this study's design and analysis and identify as patients; they conducted the research with this identity at the forefront following a peer-to-peer research model. These authors were mentored by patient researchers who also contributed to the manuscript, and the research process itself was co-lead and directed by other patient participants and consultants. Results and recommendations coming from this paper came directly from patient participants.

Pharmacological treatments for neuropsychiatric symptoms of dementia in long-term care: a systematic review.

BACKGROUND: Medications are frequently prescribed for neuropsychiatric symptoms (NPS) associated with dementia, although information on the efficacy and safety of medications for NPS specifically in long-term care (LTC) settings is limited. The objective of this study was to provide a current review of the efficacy and safety of pharmacological treatments for NPS in LTC. METHODS: We searched MEDLINE, EMBASE, PsychINFO, and the Cochrane Library for randomized controlled trials comparing medications with either placebo or other interventions in LTC. Study quality was described using the Cochrane collaboration risk of bias tool. The efficacy of medications was evaluated using NPS symptom rating scales. Safety was evaluated through rates of trial withdrawals, trial withdrawals due to adverse events, and mortality. RESULTS: A total of 29 studies met inclusion criteria. The most common medications evaluated in studies were atypical antipsychotics (N = 15), typical antipsychotics (N = 7), anticonvulsants (N = 4), and cholinesterase inhibitors (N = 3). Statistically significant improvements in NPS were noted in some studies evaluating risperidone, olanzapine, and single studies of aripiprazole, carbamazepine, estrogen, cyproterone, propranolol, and prazosin. Study quality was difficult to rate in many cases due to incomplete reporting of details. Some studies reported higher rates of trial withdrawals, adverse events, and mortality associated with medications. CONCLUSIONS: We conclude that there is limited evidence to support the use of some atypical antipsychotics and other medications for NPS in LTC populations. However, the generally modest efficacy and risks of adverse events highlight the need for the development of safe and effective pharmacological and non-pharmacological interventions for this population.

Efficacy and feasibility of nonpharmacological interventions for neuropsychiatric symptoms of dementia in long term care: a systematic review.

BACKGROUND: Nonpharmacological therapies are often recommended as a first-line treatment for neuropsychiatric symptoms (NPS) of dementia in long term care (LTC); however, little is known about which nonpharmacological interventions are most effective for NPS in LTC or the feasibility of interventions, given the availability of resources in typical LTC environments. METHODS: We searched the electronic databases MEDLINE, EMBASE, PsychINFO (1980-2010), the Cochrane Library, and Google Scholar using keywords and medical subject headings for randomized, controlled trials evaluating nonpharmacological interventions for NPS conducted in LTC settings. Change in severity of NPS symptoms was evaluated through the NPS outcomes measures reported in studies. We assessed study quality and described the feasibility of interventions based on various aspects of study design. RESULTS: A total of 40 studies met inclusion criteria. Sixteen (40%) of 40 included studies reported statistically significant results in favor of nonpharmacological interventions on at least one measure of NPS. These interventions included staff training in NPS management strategies, mental health consultation and treatment planning, exercise, recreational activities, and music therapy or other forms of sensory stimulation. Many of the studies had methodological limitations that placed them at potential risk of bias. Most interventions (n = 30, 75%) required significant resources from services outside of LTC or significant time commitments from LTC nursing staff for implementation. CONCLUSIONS: There are several nonpharmacological interventions that may be effective for NPS in LTC, although there are a limited number of large-scale, high-quality studies in this area. The feasibility of some interventions will be limited in many LTC settings and further research into practical and sustainable interventions for NPS in LTC is required to improve usage of these important treatments.