Important Resource For Patients Research Articles

Views on volunteering in mental health: a focus group study with mental health professionals and volunteers in Portugal

IntroductionVolunteering has reported health benefits. However, little is known in Portugal about the views of mental health professionals and volunteers on volunteering in mental health care.MethodsA qualitative secondary analysis of data from six focus groups with 28 participants was conducted in order to explore and compare the perspectives on volunteering in mental health of two stakeholders: mental health professionals and volunteers in Portugal.ResultsFour main themes arose: the nature of the volunteering relationship; volunteering has multiple aims; technology has potential for volunteering; and volunteering has its challenges. Although there were mostly commonalities between their views, some variability suggested that different stakeholders may consider different aspects of volunteering differently. Overall, stakeholders called for structured recruitment and support, training, defining boundaries and fighting the stigma of mental illness.ConclusionDespite the lack of volunteering tradition in mental health care in Portugal, volunteering programmes were perceived as an important resource for patients with mental illness.

M-Health in lung cancer: A literature review.

The internet and digital technology have become an important resource for patients with cancer. Mobile health strategies permit patients and clinicians to interact via different tools to enrich the supplements to routine hospital visits or out-patient attendance. In this work, we have reviewed different mobile health platforms to support lung cancer patients in different areas: pre-surgery; post-surgery and on systemic treatment. We have also reviewed different digital tools used by long-term lung cancer survivors as well as the impact of these tools on the quality of life, and we tried to analyse according to literature the potential efficiency of these platforms in health system administration.

Parosmia and altered taste in patients recovering from Covid 19

Parosmia is a well-documented consequence of smell loss associated with Covid 19. Those who experience this qualitative olfactory disorder during recovery find that the odour of common foods and household items is distorted, and the experience can range from merely altered to profoundly disgusting. This can lead to a greatly altered relationship with food, including the physical symptoms of loss of appetite, nausea, vomiting, as well as wider reaching issues such as withdrawal from social situations, emotional distancing from others in their close social circles, and anhedonia. There is at present no known cure or intervention to mitigate the condition. The AbScent Parosmia and Phantosmia support group on Facebook became an important resource for patients with this condition during the early part of the pandemic, and the crowd-sourcing of experiences, tips and peer-to-peer advice became a valuable source of information for the community as well as researchers trying to understand the condition. Using protocols described in earlier literature on the use of social media for qualitative research, this paper provides information on the management of parosmia based on the experiences of over 30k patients in the AbScent Parosmia and Phantosmia group on Facebook and 6k member of the AbScent Network.

Readability of medication guides for Food and Drug Administration-approved biologics in dermatology.

There is limited available information for patients about biologics. Medication guides are an important resource for patients, so we assessed the readability of medication guides for Food and Drug administration-approved biologics for dermatological conditions. The most important information within medication guides was written at a level more complex than recommended guidelines, highlighting health disparities and opportunities for improvement.

LB806 YouTube as a source of information on treatment of hyperpigmentation in skin of color

YouTube has become an important resource for patients who are looking to find more information about how to treat conditions in skin of color. One of the most common concerns in patients with skin of color is hyperpigmentation. The objective of this study was to assess the usefulness of information on treatment of hyperpigmentation presented on YouTube in order to assess areas of potential areas of patient outreach and education for practicing Dermatologists who are interested in Skin of Color. The YouTube site was searched systematically using the following keywords: “hyperpigmentation”, “hyperpigmentation treatment for black skin”, “hyperpigmentation treatment”, and “hyperpigmentation home remedies”.

The Readability of Ophthalmological Patient Education Materials Provided by Major Academic Hospitals

ABSTRACT Introduction The internet is an increasingly important resource for patients seeking health-related information. Because of this trend, the American Medical Association (AMA) and National Institutes of Health (NIH) recommend that online patient education materials (PEMs) be written between a third and seventh grade level. The present study evaluates the readability levels of ophthalmological PEMs provided by five major academic hospitals, quantifies the availability of accompanying videos and graphics, and examines the extent to which readability may be increased. Methods In March 2021, 397 PEMs from five major academic hospitals were extracted for subsequent analysis by seven validated readability assessments. The presence of an accompanying video or graphic was noted. Statistical significance was assessed using the Kruskal-Wallis test with Dunn’s multiple comparisons test and the chi-square test. Results Nearly all articles were written above the recommended reading level of 7th grade. After averaging the scales for each article, the median grade level was 11.7 (interquartile range [IQR], 10.7–12.7). The PEMs with the highest median reading level were provided by the Johns Hopkins University Wilmer Institute (12.6, IQR, 11.3 – 13.6). Only 13.6% and 13.1% of articles had an accompanying video and graphic, respectively. Reduction of sentence length beneath 15 words resulted in an improvement of readability by 2.7 grade levels. Conclusions The readability of online patient resources provided by major academic hospitals were above the literacy guidelines recommended by the NIH and AMA. Furthermore, most articles did not include a video or graphic, both of which could potentially improve patient understandability of educational materials. By altering these PEMs, as demonstrated here, institutions could increase the value these articles provide for patients and therefore the quality of the patient-physician relationship.

POS-795 "THE SECRET QUESTIONS IN A BOX": WHAT DO PATIENTS AND FAMILIES REALLY WANT TO KNOW ABOUT END-STAGE RENAL DISEASE?

End-stage renal disease (ESRD) is a complex condition that requires radical lifestyle changes, such as adherence to a complex regime of attendance to dialysis sessions, vascular access care, and fluid and diet management. Non-adherence to these recommendations remains a major concern, as it is related to patients’ increased morbidity and early mortality. Health information is an important resource for patients and family caregivers to understand and manage ESRD. However, they may not be able to understand the information properly due to limited health literacy.

Emotional Response to Humour Perception and Gelotophobia Among Healthy Individuals and Patients with Schizophrenia and Depression, with Signs of a High Clinical Risk of Psychosis.

Investigating early changes in the emotional sphere within the schizophrenia course is a perspective direction in clinical psychology and psychiatry. Intactness of positive emotions, in particular, humour perception, may be a very important resource for patients. At the same time, humour perception is very sensitive to pathological conditions, such as the fear of being laughed at, known as gelotophobia. Those with gelotophobia perceive laughter as dangerous, rather than pleasant, and they can hardly distinguish between teasing and ridicule. Gelotophobia was confirmed to be expressed among people with mental disorders. Nonetheless, knowledge relating to the fear of being laughed at, was mostly generated among the non-clinical samples. Thus, the aim of the study was to provide more clinical data on gelotophobia manifestations associated with schizophrenia spectrum disorders; the emotional response and facial expression of patients with gelotophobia were studied, in particular, regarding their perception of humour, including during the early stages of disorders, by comparison with healthy individuals. n=30 controls and n=32 patients with schizophrenia and with depression with signs of a high clinical risk of psychosis took part. Two short videos, comic and neutral, were shown to the participants, while videotaping their facial expression, followed each by a self-reported measure of emotional responses. Participants also completed the State-Trait Anxiety Inventory, the PhoPhiKat30 and the Toronto Alexithymia Scale. Gelotophobia was significantly higher within the clinical group. It correlated with a lower frequency of grins among the patients during the comic video, while this was not the case in the control group. Gelotophobia was related to state and trait anxiety in both groups, but only in the clinical group did state anxiety increase after watching the comic video. Gelotophobia correlated with alexithymia and was twice higher among the patients compared to the controls. Thus, gelotophobia has not only quantitative, but also qualitative specifics in patients with schizophrenia, and those with depression with signs of a clinically high risk of psychosis, compared to healthy controls.

A History of #BCSM and Insights for Patient-Centered Online Interaction and Engagement.

Participation in cancer support groups can provide a sense of community and may better prepare patients for interactions with their health care team. Online interactions may overcome some barriers to in-person support group participation. #BCSM (breast cancer social media), the first cancer support community established on Twitter, was founded in 2011 by two breast cancer survivors. The aims of this study are to describe the growth and changes in this community and to discuss future directions and lessons that may apply to other online support communities. Symplur Signals was used to obtain all #BCSM Twitter data from January 1, 2011, to January 1, 2020 (00:00:00 Coordinated Universal Time for both). Hashtag use by selected stakeholder groups, user locations, weekly tweet chat activity, and topics were determined. From year 1 (2011) to year 9 (2019), tweets using the #BCSM hashtag increased by 424%. Tweets by patient advocates increased by 226%, with a peak in 2016. Impressions, a measure of potential tweet views, by patient advocates increased by 517%. Tweets by doctors and nonphysician health care professionals increased by 693%. Weekly #BCSM tweet chat activity peaked in 2013, increasing by 58.1% from 2011. Chat topics have included survivorship, metastatic breast cancer, death and dying, advocacy, and highlights from national breast cancer meetings. #BCSM has experienced tremendous growth since 2011, although there are challenges to community sustainability. The weekly chats, as well as discussions utilizing the hashtag but occurring outside of scheduled chat times, serve as an important resource for patients and offer physicians an opportunity to both support and learn from patients.

Changes in the health‐related quality of life of patients with prostate cancer and their spouses

ABSTRACTThe purpose of this study was to determine how the health‐related quality of life (HRQoL) of patients with prostate cancer and their spouses change during the 6 months after diagnosis and which factors explain the changes. Patients with prostate cancer and their spouses have reported a decrease in HRQoL, but simultaneous follow‐up of the HRQoL of patients with prostate cancer and their spouses is rare. The sample consisted of 186 couples. The participants personally filled in the RAND‐36‐Item Health Survey, both at the time of diagnosis and 6 months later. Changes in the HRQoL were analysed statistically using descriptive statistics and non‐parametric tests. Linear regression models were used to identify the factors associated with the changes in HRQoL in the patients and their spouses. The HRQoL of patients with prostate cancer and their spouses did not change significantly during the first 6 months after diagnosis. Changes in the patients’ bodily pain and physical functioning were explained by their background variables. The spouses’ background variables did not explain the changes in HRQoL during the follow‐up period. In addition, the changes in the HRQoL of patients and their spouses are very similar. There is a need for long‐term assessment of changes in the HRQoL of patients with prostate cancer and their spouses. The findings indicate that attention should be paid to spouses with regard to the nursing of patients with prostate cancer, as spouses seem to be an important resource for patients with prostate cancer.

Patients' practices for taking the initiative in decision-making in outpatient psychiatric consultations.

In spite of increasing advocacy for patients' participation in psychiatric decision-making, there has been little research on how patients actually participate in decision-making in psychiatric consultations. This study explores how patients take the initiative in decision-making over treatment in outpatient psychiatric consultations in Japan. Using the methodology of conversation analysis, we analyze 85 video-recorded ongoing consultations and find that patients select between two practices for taking the initiative in decision-making: making explicit requests for a treatment and displaying interest in a treatment without explicitly requesting it. A close inspection of transcribed interaction reveals that patients make explicit requests under the circumstances where they believe the candidate treatment is appropriate for their condition, whereas they merely display interest in a treatment when they are not certain about its appropriateness. By fitting practices to take the initiative in decision-making with the way they describe their current condition, patients are optimally managing their desire for particular treatments and the validity of their initiative actions. In conclusion, we argue that the orderly use of the two practices is one important resource for patients' participation in treatment decision-making.

MP01: The canary in the coal mine: Does palliative care consultation influence emergency department utilization?

Introduction: For cancer patients undergoing active treatment, emergency department (ED) visits may be an indicator of a breakdown in continuity and quality of care. Palliative care (PC) may be an important resource for patients in need of symptom management even during treatment with curative intent. This study aims to describe ED utilization by cancer patients and determine if PC consults impact ED use. Methods: Patient data from the Tom Baker Cancer Center (TBCC) was linked to PC and ED data as a retrospective cohort study. ED data was obtained from two administrative databases and PC data was obtained from four administrative databases and restricted to the first four hundred days following diagnosis. Univariate and Multivariate analyses were used. Results: Three actively treated cancer patient cohorts were identified based on first presentation following intake at the TBCC: 1) Used ED first (n=1637), 2) Used PC first (n=539), and 3) Only used services at the TBCC (n=2153). Using Multivariate analysis, patients living alone or who had a diagnosis of prostate or breast cancer were more likely to access the ED first or to only use services at the TBCC rather than access PC first. Patients who were divorced, on income support, or diagnosed with a lung or GI cancer, were more likely to access PC first rather than access the ED or only use services at the TBCC. A subgroup analysis was performed on those who accessed the ED at some point during their care, consisting of three groups: 1) ED Only Users (n=1091), 2) ED First Users, who also accessed PC (n=546), and 3) PC First Users, who also accessed the ED. There was a significant difference in rates of ED visits between the three groups: ED Only Users went to the ED at a rate of 3.8 per 1000 patient days; ED First Users, who also accessed PC, went to the ED at a rate of 7.7 per 1000 patient days; and PC First Users, who also accessed the ED, went to the ED at a rate of 9.2 per 1000 patient days (p< 0.001). Conclusion: In a tertiary cancer centre, patients who were divorced, on income support, or diagnosed with lung or GI cancer were more likely to access PC. Amongst those patients who presented to the ED, those who accessed PC first had higher rates of ED use. Further explorations of presenting complaints, utilization patterns, and symptom burdens will be analyzed to determine if early PC consults can influence or decrease ED utilization.

Analysis of youtube as a source of information for peripheral neuropathy.

YouTube is an important resource for patients. No study has evaluated the information on peripheral neuropathy disseminated by YouTube videos. In this study, our aim was to perform a systematic review of information on YouTube regarding peripheral neuropathy. The Web site (www.youtube.com) was searched between September 19 and 21, 2014, for the terms "neuropathy," "peripheral neuropathy," "diabetic neuropathy," "neuropathy causes," and "neuropathy treatment." Two hundred videos met the inclusion criteria. Healthcare professionals accounted for almost half of the treatment videos (41 of 92; 44.6%), and most came from chiropractors (18 of 41; 43.9%). Alternative medicine was cited most frequently among the treatment discussions (54 of 145, 37.2%), followed by devices (38 of 145, 26.2%), and pharmacological treatments (23 of 145, 15.9%). Approximately half of the treatment options discussed in the videos were not evidence-based. Caution should be exercised when YouTube videos are used as a patient resource.

Paging Doctor Google! Heuristics vs. technology

The most dramatic development in medical decision-making technology has been the advent of the Internet. This has had an impact not only on clinicians, but has also become an important resource for patients who often approach their doctors with medical information they have obtained from the Internet. Increasingly, medical students, residents and attending physicians have been using the Internet as a tool for diagnosing and treating disease. Internet-based resources that are available take various forms, including informational websites, online journals and textbooks, and social media. Search engines such as Google have been increasingly used to help in making diagnoses of disease entities. Do these search methods fare better than experienced heuristic methods? In a small study, we examined the comparative role of heuristics versus the 'Google' mode of thinking. Internal medicine residents were asked to “google” key words to come up with a diagnosis. Their results were compared to experienced nephrology faculty and fellows in training using heuristics and no additional help of internet. Overall, with the aid of Google, the novices (internal medicine residents) correctly diagnosed renal diseases less often than the experts (the attendings) but with the same frequency as the intermediates (nephrology fellows). However, in a subgroup analysis of both common diseases and rare diseases, the novices correctly diagnosed renal diseases less often than the experts but more often than the intermediates in each analysis. The novices correctly diagnosed renal diseases with the same frequency as nephrology fellows in training.

Paging Doctor Google! Heuristics vs. technology

The most dramatic development in medical decision-making technology has been the advent of the Internet. This has had an impact not only on clinicians, but has also become an important resource for patients who often approach their doctors with medical information they have obtained from the Internet. Increasingly, medical students, residents and attending physicians have been using the Internet as a tool for diagnosing and treating disease. Internet-based resources that are available take various forms, including informational websites, online journals and textbooks, and social media. Search engines such as Google have been increasingly used to help in making diagnoses of disease entities. Do these search methods fare better than experienced heuristic methods? In a small study, we examined the comparative role of heuristics versus the 'Google' mode of thinking. Internal medicine residents were asked to "google" key words to come up with a diagnosis. Their results were compared to experienced nephrology faculty and fellows in training using heuristics and no additional help of internet. Overall, with the aid of Google, the novices (internal medicine residents) correctly diagnosed renal diseases less often than the experts (the attendings) but with the same frequency as the intermediates (nephrology fellows). However, in a subgroup analysis of both common diseases and rare diseases, the novices correctly diagnosed renal diseases less often than the experts but more often than the intermediates in each analysis. The novices correctly diagnosed renal diseases with the same frequency as nephrology fellows in training.

Empowerment of Chinese patients with cancer through self-help groups in Hong Kong.

This study was conducted to identify the process and outcomes of empowerment as experienced by Hong Kong Chinese patients with cancer through participation in cancer self-help groups. The study involved in-depth individual interviews of self-help group members (n = 12) and participant observation of the group meetings over a period of 6 months. The empowered outcomes at a personal level included interconnectedness, confidence and hope, support and affirmation, and a feeling of usefulness. At a social level, expanded social network and opportunities to participate in more activities were reported. Collective efficacy also was demonstrated, although this happened only occasionally through participation in the group. One main theme that runs through the process of participation is empowerment among the members. On the basis of the efficacy demonstrated by self-help groups in this study, nurses should strongly consider referral of patients to such groups. Self-help groups serve as an important resource for patients with cancer in the Hong Kong Chinese community.