Fellow Patients Research Articles

Women's Experience and Management of Cancer-Related Fatigue and Psychological Distress During Treatment for Gynaecological Cancer: A Qualitative Study.

To explore women's experience and management of cancer-related fatigue and psychological distress during treatment for gynaecological cancer. Qualitative descriptive study. Face-to-face semistructured individual interviews were conducted with 23 women in mainland China undergoing treatment for gynaecological cancer between July and October 2023. Data were analysed using content analysis. Three categories were identified: overwhelming experience of cancer-related fatigue, diverse experiences of psychological distress and strategies for managing cancer-related fatigue and psychological distress. Participants reported physical exhaustion and emotional fatigue, disrupting their normal lives. Psychological distress included distress due to cancer treatment, psychological burden associated with social relationships, frustration with being ill and worries about disease progression and recurrence. Strategies for managing symptoms were mainly nonpharmacological, with some unable to find suitable methods. This study found that participants had a complex experience of cancer-related fatigue and psychological distress, influenced by social expectations regarding women's roles and treatment impacts on reproductive health and femininity. These findings underscore the need for comprehensive interventions involving family members or fellow patients to reduce both symptoms. Nurses should focus on addressing cancer-related fatigue and psychological distress in women receiving treatment for gynaecological cancer, particularly in adolescents and young adults. It is essential to provide comprehensive care to improve their physical and psychological well-being. This study explored how women with gynaecological cancer experience and manage cancer-related fatigue and psychological distress. The findings highlight the need for holistic care that addresses physical and psychological symptoms. Nurses should consider the impact of reproductive health and femininity on symptom experiences and management. Furthermore, the findings could inform the development of evidence-based interventions to improve the physical and psychological well-being of women with gynaecological cancer. Standards for Reporting Qualitative Research checklist. No patient or public contribution.

Patient responsiveness as a safewards fidelity indicator: a qualitative interview study on an acute psychiatric in-patient ward

BackgroundThe Safewards model aims to reduce conflict and use of containment on psychiatric wards. To evaluate the implementation of Safewards and understand why it is effective in some settings but not in others, it is important to assess the level of implementation fidelity. To do this, the Safewards Fidelity Checklist (SFC) is often used, which focuses on objective visual observations of interventions but does not include patient responsiveness. The latter is a key indicator of implementation fidelity and includes engagement, relevance, acceptability and usefulness. The aim of the present study was to investigate the fidelity of Safewards implementation on an acute psychiatric ward from the perspective of patient responsiveness.MethodThe study was conducted on a ward for patients with mainly affective disorders. To assess the general level of fidelity the SFC was used together with a detailed ward walkthrough. Ten patients were interviewed with a focus on patient responsiveness to each of the seven interventions implemented on the ward. Data were analysed using qualitative descriptive analysis.ResultsThe findings indicate high implementation fidelity, which was reflected in the SFC assessment, walkthrough and patient responsiveness. Patients gave examples of improvements that had happened over time or of the ward being better than other wards. They felt respected, less alone, hopeful and safe. They also described supporting fellow patients and taking responsibility for the ward climate. However, some patients were unfamiliar with a ward where so much communication was expected. Several suggestions were made about improving Safewards.ConclusionsThis study confirms previous research that patient responsiveness is an important factor for achieving fidelity in a prevention programme. The patients’ descriptions of the acceptability, relevance and usefulness of the specific interventions reflected to a high degree the objective visual observations made by means of the SFC and ward walkthrough. Patient engagement was demonstrated by several suggestions about how to adapt the interventions. There is potential to obtain valuable input from patients when adapting Safewards in practice. This study also presents many examples of practical work with these interventions and the effects it can have on patients’ experiences of care.

Co-designing an information map guiding patients on their journey to cardiac rehabilitation in Austria

Abstract Background Cardiac rehabilitation (CR) is underutilised worldwide. Cardiac patients lack sufficient information about CR, for example, regarding the health benefits of CR and how to obtain a referral. This gap presents a significant barrier to CR uptake. Purpose The purpose of this study was (1) to define patients’ needs during their transition from the acute hospital setting to CR and (2) to design a need-based information map. Methods We conducted three sequential co-design workshops with 17 participants: ten cardiac patients, most of whom had completed a CR programme, six healthcare professionals who worked within the CR pathway, and one who was a healthcare professional with a cardiac condition who had completed a CR programme. Patients’ needs and design suggestions were elicited through generative co-design methods [1], such as paper prototyping, persona scenarios, group discussions and presentations, and card sorting. Data were analysed with thematic analysis. Results Workshop participants identified three "steps" at which orientation is required to guide patients along their journey: (1) during the hospital stay, (2) while at home, and (3) throughout the CR programme. Patients’ needs changed accordingly, prompting us to tailor information and tips to these steps (s. Figure). In the hospital, patients needed orientation about follow-up care. The patients sought facts about CR, enabling them to make an informed decision for or against participation. Particularly, info about programme duration, content and health benefits were appreciated. Information about common symptoms related to the treatment and explanations of the hospital environment were also perceived as helpful. After discharge, the time at home was characterised by a need for calm after the stressful time in the hospital. Patients reflected on their cardiac events. Information on adopting a heart-healthy lifestyle and guidance on preparing for CR were perceived as helpful. Contact details for medical support were appreciated. During the CR programme, patients sought motivational support for programme adherence. They appreciated tips such as making use of the time for bonding and seeking out friendships with other patients. Testimonials sharing experiences and tips presented by fellow patients were considered helpful at any point along the patient journey. Conclusion When transitioning from the acute hospital to CR, cardiac patients’ needs change in distinctive steps, which the settings hospital, home and CR represent. Information and tips should be tailored accordingly. Our information map may support patients’ CR uptake and facilitate cardiac patient pathways in Austria, for example, by developing patient-facing technology.Patients' needs and required information

Patients and family attitudes about clinical and research sharing of electronic clinical data

Purpose To access the attitudes of service users about the sharing of health records for research and to foster collaboration between municipal health services and the specialist health services in Norway. Methods Members (n ≈ 2000) of the Norwegian mental health service users’ organizations (SUO’s), ADHD Norway, the Autism Association and the Tourette Association, representing Central Norway, participated in the study, (N = 108, 5.4% response rate). Descriptive statistics were used to evaluate distributions of responses to the questionnaire. Results Service users reported being aware that municipal health services collaborate with the specialist health service (62%), with mental health care in the specialist health service (57%), and child and adolescent psychiatric services (61%). A large proportion of individuals were aware of the benefits of sharing their health records (93%), have trust in the use of data by health authorities (81%), and were willing to share records to benefit fellow patients (84%). Personal experience (69%) and impressions from mainstream media (55%) had the most influential impact on users’ views of the Health Platform, an electronic health communication system. A majority of users had a negative perception of the Health Platform, even though some expect it to become a valuable tool in the future (50%). Conclusions Service users are aware of and positive about benefiting others by sharing health records. They trust the health authorities, however, have negative attitudes about the Health Platform, apparently based on personal experiences and media influence. However, service users can see the potential usefulness of the Health Platform in the future.

Rehabilitation experiences following major lower limb amputation due to complications of vascular disease: a UK qualitative study

Purpose Rehabilitation experiences of lower limb amputees with poorer physical health have not been fully explored. This study aimed to qualitatively explore experiences of rehabilitation amongst patients who had recently undergone amputation due to complications of vascular disease. Methods Semi-structured, face-to-face interviews were conducted with 14 patients participating in the PLACEMENT randomised controlled feasibility trial (ISRCTN: 85710690; EudraCT: 2016-003544-37), which investigated the effectiveness of using a perineural catheter for postoperative pain relief following major lower limb amputation. Framework analysis was used to identify key themes and compare participant data. Findings Three main themes and corresponding sub-themes were identified: (i) other patients as inspiration; (ii) other patients as competition; and (iii) imagined futures. Perceptions relating to other patients played a key role in rehabilitation, providing a source of motivation, support, and competition. Participants’ imagined futures were uncertain, and this was compounded by a lack of information and delays in equipment and/or adaptations. Conclusions Findings highlight the importance of fellow patients in supporting rehabilitation following lower limb amputation. Enabling contact with other patients should thus be a key consideration when planning rehabilitation. There is a clear unmet need for realistic information relating to post-amputation recovery, tailored to the needs of individual patients.

Like cheese and chalk or cross-fertilization? A qualitative exploration of how addiction patients perceive treatment in a general psychiatry ward

Background Addiction has historically been conceptualized and treated differently to other conditions. Studies suggest that healthcare staff perceive patients with substance use disorders (SUD) as a specific subgroup with distinct and challenging needs yet SUD patients frequently receive treatment in general psychiatry settings. Notwithstanding, knowledge of how SUD patients view themselves compared to other psychiatric patients and how they experience treatment in general psychiatry settings is lacking. Methods We conducted semi-structured interviews with 22 SUD patients voluntarily hospitalized in the acute psychiatric unit of a general hospital to explore the lived experiences of SUD patients receiving detoxification in an acute psychiatry ward. Data were analyzed using Thematic Content Analysis. Results Two primary themes and five subthemes emerged: (A) Patient perceptions of the problem and its consequences’, which includes the subcategories (i) Patient views of addiction, (ii) Staff perception of the patients; and (B) Lived experiences within the specific setting with subthemes (i) Interaction with the specific setting, (ii) Interaction with fellow patients, and (iii) Perception of staff by patients. Conclusions Overall, SUD patients had mixed perceptions; while many appreciated aspects of their hospitalization, others faced challenges in having all their needs met. Implementing policy-level interventions, like integrating SUD patient needs into psychiatry ward design and ensuring adequate resource allocation and staff training, could improve care quality for addiction patients in general psychiatry settings.

Selection of social comparison standards in cardiac patients with and without experienced defibrillator shock

Patients with an implantable cardioverter-defibrillator (ICD) often report psychological distress. Literature suggests that patients with physical disease often compare their well-being and coping to fellow patients. However, we lack knowledge on social comparison among patients with ICD. In this study, we examined psychological distress and social comparison selection in patients with (ICD+) and without experienced ICD shocks (ICD−). We theorized that relative to ICD− patients, those with ICD+ display higher levels of psychological distress and thereby compare more frequently with fellow patients with more severe disease, but better disease coping and try to identify more strongly with these standards to improve their own coping. We recruited 92 patients with (ICD+, n = 38) and without an experienced ICD shock (ICD−, n = 54), who selected one of four comparison standards varying in disease severity and coping capacity. Relative to ICD−, ICD+ patients reported higher levels of device-related distress, but there were no significant differences in anxiety, depression, or quality of life. ICD+ patients selected more often comparison standards with poor coping and, irrespective of standard choice, displayed more negative mood following comparison. Our results show that ICD+ patients tend to perform unfavorable comparisons to fellow patients, which might explain higher psychological distress and worse coping. These findings warrant further research into social comparison as a relevant coping mechanism in ICD patients.

Reverse care at the end of life

Abstract Objectives This study investigates the phenomenon of reverse care, characterized by the actions of terminally ill individuals who, despite their own suffering, attend to the well-being of other people and society at large. While end-of-life care has been widely studied, the phenomenon of reverse care remains largely unexplored, even though it reflects personal autonomy, compassion and sense of social responsibility among people nearing the end of their lives. By drawing on the Buddhist notion of merit transfer, we applied the concept of reverse care in analyzing 146 interviews conducted in 2023 with family caregivers and healthcare professionals in China. Our aim was to uncover how terminally ill individuals expressed concern for other people. Methods We employed a qualitative analysis of interview transcripts using NVIVO software. The transcripts were coded into 83 reference points, seven primary codes, four axial codes, and a core code, focusing on recalled events, personal anecdotes, reflections on interpersonal relationships, and vignettes of end-of-life situations. Results Evidence of reverse care was identified in 25 percent of the interviews. Among the 83 reference points, 61 related to caring for one's own family, while 22 highlighted concern for society, fellow patients and medical staff. Although a common form of reverse care was clearly identified with the protective attitude that terminally ill patients displayed towards their own families, a significant number of individuals expressed a deep sense of social responsibility, exemplified by actions such as showing compassion for fellow patients, expressing gratitude to medical staff, insisting on eco-friendly burials, arranging for organ donations or offering their bodies for medical research. Conclusions This study highlights a different approach to understanding how individuals approach their final days with dignity and purpose. It suggests that reverse care in end-of-life situations fosters a process of meaningful engagement with the world through death and thereafter.

Practical tips by peer support in chronic vestibular hypofunction: an exploratory survey.

Patients with chronic vestibular hypofunction typically suffer from dizziness, imbalance and oscillopsia (blurred vision); symptoms that pose challenges to everyday life. Currently, advice on how to deal with such challenges is mainly provided by health care professionals (i.e., ENT-surgeons, neurologists, physiotherapists and psychologists). However, fellow patients with a similar condition and a true appreciation of the lived experiences, are likely to provide valuable support and advice as well. The purpose of this study, therefore, was to collect tips and advice from patients with chronic vestibular hypofunction. An exploratory survey was designed to collect tips from fellow chronic vestibular hypofunction patients on how to cope with disease-related challenges in everyday life. The survey was distributed both online and in person. The list of tips was coded and analyzed thematically and deductively, by using the international classification of functioning, disability, and health (ICF) model. In total, 425 tips were obtained from the 179 participants. Most tips were coded under "environmental factors" (46%) and "activities and participation" (39%). The remaining tips were categorized as "body functions" (15%). No tips were about "body structures." The participants coped with their daily struggles by investing in assistive products and technology, like adapted bikes, special footwear, walking frames. They described the importance of ensuring minimal light intensity for visibility (i.e., installing light sources in dark places). During activities, participants gave the advice to avoid bumpy roads and obstacles, and highlighted the necessity of adequate visual fixation to maintain balance. To ensure optimal activity, participants emphasized the importance of managing energy and taking sufficient rest. This study gives insight into how patients with chronic vestibular hypofunction cope with everyday struggles due to their symptoms. These tips can expand advice given by healthcare professionals. Knowing that fellow patients experience similar struggles and learned to deal with their struggles in adequate ways, might offer support and help patients focus on possibilities rather than on disabilities. Further research should investigate the effect of sharing tips to see whether improvement in (mental) health can be achieved in patients with chronic vestibular hypofunction.

Development and impact of a tailored eHealth resource on fibromyalgia patient's self-management and self-efficacy: A mixed methods approach.

To develop an eHealth resource to support fibromyalgia patients and explore it for usability and impact on their self-management and self-efficacy. Fibromyalgia is a complex, non-progressive chronic condition characterised by a bewildering array of symptoms for patients to self-manage. International guidelines recommend patients receive illness-specific information once diagnosed to promote self-management and improve health-related quality of life. A 3-phase mixed methods exploratory sequential design. Qualitative interviews explored the information and self-management needs of fibromyalgia patients attending a large tertiary hospital in Dublin. Identified themes together with an extensive review of the literature of interventions proven to be impactful by patients with fibromyalgia were utilised in the design and development of the eHealth resource. The resource was tested for usability and impact using pre and post-intervention outcomes measures. Patient interviews highlighted a lack of easy accessible evidenced information to support self-management implicating the urgent need for a practical solution through development of a tailored eHealth resource. Six themes emerged for inclusion; illness knowledge, primary symptoms, treatment options, self-management strategies, practical support and reliable resources. Forty-five patients who tested the site for usability and impact demonstrated a statistically significant improvement in self-efficacy after 4 weeks access with a medium positive effect size. Patients with the most severe fibromyalgia impact scores pre-intervention demonstrated the most improvement after 4 weeks. Patients gave the resource a System Usability Score A rating, highly recommending it for fellow patients diagnosed with fibromyalgia. The study demonstrated how the development of a novel eHealth resource positively impacted fibromyalgia patients' self-efficacy to cope with this debilitating condition. This study suggests that access to eHealth can positively impact patients self-efficacy, has the potential to be a template for eHealth development in other chronic conditions, supporting advanced nurse practitioners working in chronic disease management.

Do pain therapy patients benefit from their fellow patients?

Zusammenfassung Hintergrund Interdisziplinäre multimodale Schmerztherapie (IMST) wird meist im Gruppensetting durchgeführt, um den Erfahrungsaustausch zwischen Patienten anzuregen und so die Veränderung schmerzbezogener Einstellungen und Verhaltensweisen zu erleichtern. Wie aus der Psychotherapieforschung bekannt ist, haben die Mitpatienten einer Therapiegruppe einen relevanten Einfluss auf den Therapieerfolg der einzelnen Patienten. Ziel der Arbeit Wir untersuchten, inwieweit der Therapieerfolg in einer IMST-Gruppe von einzelnen Mitpatientencharakteristika wie dem mittleren Stadium kognitiv-verhaltensorientierter Schmerzbewältigung der Mitpatienten, der Differenz zum eigenen Schmerzbewältigungsstadium und dem Anteil an therapiewiederholenden Mitpatienten beeinflusst wird. Methodik In einer retrospektiv geplanten Untersuchung der psychometrischen Testungen aller Patienten in einer stationären IMST zwischen Januar 2013 und Februar 2020 wurde mittels binärer logistischer Regressionsanalysen der Einfluss der Mitpatientencharakteristika auf klinisch relevante Veränderungen hinsichtlich verschiedener Parameter zur Ausprägung der chronischen Schmerzerkrankung analysiert. Ergebnisse Untersucht wurden 540 Erstaufenthalte von 636 Behandlungsfällen. Pro Behandlungstag waren durchschnittlich 5 Mitpatienten, davon 15 % Therapiewiederholer, anwesend. Es zeigte sich, dass die Wahrscheinlichkeit, einen Erfolg in mindestens einem der untersuchten Parameter zu erreichen, zum einen vom Schmerzbewältigungsstadium der Mitpatienten (p < 0,001; OR = 2,885) und zum anderen vom Anteil an therapiewiederholenden Mitpatienten (p < 0,001; OR = 1,032) signifikant erhöht wird. Ein Einfluss auf den Therapieerfolg in einem spezifischen Parameter konnte nicht nachgewiesen werden. Fazit Trotz methodischer Limitationen legen unsere Ergebnisse nahe, in Patientengruppen einer IMST therapieerfahrene Patienten und solche in einem fortgeschrittenen Schmerzbewältigungsstadium mit Neulingen und Patienten, die noch am Anfang der Bewältigung der Schmerzerkrankung stehen, zu kombinieren. Graphic abstract

Factors influencing early mobilisation for patients undergoing pancreatic surgery from multiple perspectives: a qualitative descriptive study

ObjectivesDespite early mobilisation as a key component of enhanced recovery after surgery pathways for pancreatic surgery, the implementation of early mobilisation remains unsatisfactory. What factors influence the implementation of early...

"I wish people could come together like we have," patient and provider perspectives on VA residential PTSD treatment.

Although most posttraumatic stress disorder (PTSD) care in the Veterans health administration (VHA) is provided on an outpatient basis, the VHA has 40 residential rehabilitation treatment programs (RRTPs) designed to treat Veterans who require more intensive and closely monitored care. Unfortunately, the clinical outcomes of these programs are modest, and previous attempts to identify key drivers of outcomes have uncovered few modifiable factors. The present study, informed by the model of resources, life events and changes in psychological state, was designed to identify factors associated with treatment response among RRTP patients and providers. Semistructured interviews were conducted with 24 patients and 12 providers at three regional RRTPs, using interview guides based on the theoretical model. Data were analyzed using rapid analysis. Results showed that patients and providers agreed on several factors critical to RRTP success. These factors included the provision of evidence-based psychotherapy (EBP), support and understanding from fellow patients, and skill and support from providers. Patients and providers also noted the importance of psychological flexibility, openness, and willingness to change. Patients who experienced less symptom improvement over the course of treatment were more likely to report poor therapeutic alliance. These findings underscore the importance of continued emphasis on EBP delivery but also suggest that RRTPs might find additional ways to capitalize on the residential milieu to encourage engagement in treatment and a focus on therapeutic change. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

CE Workshop 11: The Cognitive Contraindications, Complications and Costs of Epilepsy Surgery

Abstract & Learning ObjectivesThe role of the neuropsychologist in epilepsy surgery programs has evolved considerably over the past decade. In addition to gatekeeping against catastrophic outcomes, the preoperative neuropsychological assessment is also used to predict the nature and extent of likely postoperative cognitive change and to guide the preparation of prospective candidates accordingly. This workshop will introduce the concepts of contraindication, complication and cost with respect to cognitive outcomes following traditional and newer, less invasive forms of epilepsy surgery. We will explore how neuropsychological data can be integrated with the findings from the wider presurgical evaluation to assess the cognitive risk in each of these categories, with a particular focus on functional and structural imaging techniques. Finally we will look at ways in which information about risks to cognitive function can be shared with both fellow clinicians and patients at each stage along the surgical pathway. Upon conclusion of this course, learners will be able to: 1.Recognize the distinction between cognitive contraindications, complications and costs in cognitive outcomes following epilepsy surgery2.Summarize the latest developments in non invasive epilepsy surgery investigations and techniques and their implications for neuropsychological function3.Apply neuropsychological data to predict postoperative cognitive outcomes and use these predictions to prepare surgical candidates for any anticipated changes.

Experiences of patients with metastatic breast cancer: A qualitative study.

346 Background: More than 150,000 women live with incurable metastatic breast cancer (MBC) in the U.S. today. Survival for patients with MBC has greatly improved over recent decades, but studies exploring aspects of breast cancer survivorship (quality of life, health outcomes, coping, etc.) disproportionately focus on patients with non-metastatic disease. In an effort to better serve patients with MBC at our large tertiary cancer center, we launched a project to understand the preferences, perceived barriers, and unmet needs of this unique population. Methods: We employed focus groups to qualitatively examine patients living with metastatic breast cancer at all points in their journey with advanced cancer. Two experienced patient advocates provided feedback on the protocol. We invited 37 patients with metastatic breast cancer to participate in focus groups of 2-4 subjects. A researcher moderated these recorded conversations, asking subjects to discuss their memories of being diagnosed with MBC, their everyday experience of living with MBC, and their hopes and fears as they look forward. Written transcripts of the studies are coded using the Atlas.ti qualitative research software with intercoder reliability calculated among three coders. Recurrent themes are identified and described. Results: 32 patients participated in 13 focus groups. The majority of patients were white (88%), with an average age of 59 (median 61). Median time since diagnosis with metastatic disease was 57 months (4.75 years). 84% of patients had estrogen-receptor positive MBC, 28% had HER2-positive MBC, and none had triple negative disease. Initial themes identified include a desire for more information about treatments (new drugs, clinical trials, symptom management), and about planning in the face of uncertainty (especially financial, but also regarding end-of-life challenges, relationship changes). Patients also commonly expressed a need for more connection to fellow patients who can provide guidance and support. Analysis of data and formulation of findings are still ongoing, and will be completed by the end of 2023. Publication is planned for early 2024. Conclusions: Metastatic breast cancer cancer survivors continue to have unmet physical, practical, emotional, and spiritual needs. These needs change throughout a patient’s journey. The knowledge gained from exploring these needs will inform projects and management changes designed to better serve our patients by adapting existing services and creating new ones.

E73 Resilience and transition readiness for adolescents living with rheumatic diseases: a narrative review of literature and a plea for action

Abstract Introduction Rheumatic diseases are among common chronic health conditions affecting the pediatric population and persist through adolescence to adulthood. Adolescence is a complex period of development, growth and vulnerability, especially for those living with chronic illnesses. Socio-emotional, physical and cognitive growth spurt, quest for independence and peer pressure affect coping with rheumatic disorders and adherence to management. Dealing with rheumatic diseases may be associated with disruption of school routine, relationships and friendships, body image and overall quality of life, and may be devastating to affected adolescents. An additional toll on mental health is exerted by dealing with loss of fellow patients who succumb from the diseases like their own. A comprehensive mode of care that foster resilience and well-being of adolescents beyond disease control, and ensuring successful transition to adult care is of paramount importance. The objective of this review was to synthesize evidence on resilience programs and transition services offered to adolescents living with rheumatic diseases. Adolescents living with rheumatic diseases are of two classes; those growing into adolescence with child-onset rheumatic diseases and those who are newly diagnosed during adolescence. This review included both populations. We also aimed to specifically document such services existing in the Sub-Saharan Africa (SSA) context. Methods We conducted a narrative review of literature from publicly available databases including google scholar and PubMed. PICO aspect of this review was as follows; P: Adolescents living with rheumatic diseases, I: Transition and resilience programs to foster their well-being during and beyond adolescence C: there was no comparator group assessed and O: successful transition to adult care. Results Challenge on comprehensive care for adolescents living with rheumatic diseases and successful transition of adolescents from child-oriented care to independent adult care exist globally. Lack of adolescent oriented care, teaching aids and poor knowledge of providers on the importance of offering adolescent-oriented care rather than dealing with the disease alone have been implicated. Further to that, shortage of resources such as space, finances and personnel have been documented to hinder implementation of adolescent friendly services. Lack of integrated multidisciplinary coordination involving clinicians, sociologists, psychologist and community workers has also been shown to hamper wholistic care approach for adolescents growing up with rheumatic diseases. Various clinic models, transition programs, transition readiness assessment tools (TRAT) and transition readiness assessment questionnaires (TRAQ) have been proposed, most of which are from high income settings. Of importance to note, there is an alarming scarcity of literature from SSA context despite a growing population of children and adolescents diagnosed with rheumatic diseases. Questions remain; what are the needs to be addressed to enhance resilience of adolescents living with rheumatic diseases in SSA context? What are the acceptable methods to assess transition readiness, foster adolescents’ treatment responsibility and good treatment outcomes? Conclusion Due to complexity of adolescence time period, there is an urgent need for context specific models that may help adolescents living with rheumatic diseases navigate through adolescence and successfully transit to independent adult care. Multiple clinical care and transition models have been proposed to enhance successful transition of adolescents living with rheumatoid diseases to adulthood. However, adolescents from SSA may have unique challenges compared with those from developed countries where most of the studies have been done. There is an urgent need to address this gap. Ethics This work encompasses synthesis of evidence already published material containing de-identified information. Ethical approval was not deemed pertinent.

Coping Mechanisms for Lymphedema: An Analysis of Patient Experiences.

Background and objective Lymphedema is a condition caused by impaired lymphatic function. Acquired lymphedema is often due to neoplasia, infection, trauma, or radiation damage. Most patients rely on advice from fellow patients and personal research to manage their symptoms. We believe coping mechanisms for lymphedema can be more streamlined and made easily accessible if the most common effective strategies are determined and collected in a single repository for reference. To that end, we aimed to assess the experiences of lymphedema patients and the coping mechanisms they employed. Methods Feedback from lymphedema patients was obtained using a 19-item questionnaire-based survey distributed to multiple online lymphedema support groups. It focused on the type of lymphedema and its effect on the respondents and sought data to characterize coping mechanisms that individuals with lymphedema use and their effectiveness. Results The respondents (n=400) had a median age of 55 years (range: 18-83 years). The overall mean BMI was 35.8 kg/m2, with respondents with lower extremity (LE) lymphedema having a greater mean BMI (38.4 vs. 31.0, p<0.05). Most of the respondents were female (n=382, 95.5%). LElymphedema was more common (n=280, 70%) than the upper extremity (UE) variant (n=120, 30%). Within the LE group, 99 were unilateral (35.4%) and 181 were bilateral (64.6%). Moderate restriction was the most reported level with 44% in the unilateral group and 64% in the bilateral group. Stretching, low-impact exercise, manual lymphatic drainage (MLD), and compression bandages were the most commonly used coping methods and most of the respondentsrated them as somewhat effective. Of note, 30% of respondents in either group rated increased water intake as either slightly, moderately, or very helpful; 25% of respondents also rated decreased alcohol intake as very helpful. The use of a therapist and familyand doctor support was rated as extremely helpful. Within the UE group, 105 were unilateral (87.5%) and 15 were bilateral (12.5%). The most common cause of UE lymphedema was breast cancer-related (98/120, 81.7%) followed by melanoma treatment. Mild restriction was the most reported level (n=48, 45.7%). The UE group had similar results as the LE group in terms of coping mechanisms, dietary changes, and psychosocial support. Conclusion Based on the experiences of the lymphedema patients surveyed, the management of the condition is multifactorial and hence not compatible with a one-size-fits-all strategy. LE lymphedema was more common than the UE variant; but both groups reported engaging in stretching, low-impact exercise, manual lymphatic drainage, and compression bandages with similar rates of satisfaction reported in both groups. Dietary changes were not commonly employed. Therapy, doctor, and family support were the most commonly used support mechanisms, with high satisfaction among both groups. The overall coping mechanisms and their ratings in terms of efficacy between UE and LE groups were similar although the impact of quality of life was greater for bilateral conditions. We believe our findings represent the first steps to providing information potentially useful to aid future and current lymphedema patients in finding the coping methods that work best for them.

Contaminated Equipments: A Source of Hospital Acquired Infections among Patients at Critical Areas of Holy Family Hospital, Rawalpindi

Introduction: A nosocomial infection is contracted within a period of 48 hours following admission to a hospital or within 48 hours after being discharged from the hospital. Patients in the intensive care unit (ICU) are vulnerable to infections due to various factors, including their pre-existing medical conditions, medical procedures such as surgery, intubation, and catheterization, as well as their potential exposure to microorganisms from fellow patients. In addition to this, the presence of contaminated equipment represents a significant contributor to the occurrence of hospital-acquired infections caused by multidrug-resistant organisms among patients in critical areas. Methods: This cross-sectional study was conducted in coronary care and critical areas of Holy Family Hospital, Rawalpindi. A total of 415 samples were processed at the microbiology laboratory over a 4 month period from which 112 were swabs taken from equipment of the Medical, Surgical and Pediatric intensive care Units (MICU, SICU, and PICU) and the Coronary Care Unit. The remaining 303 samples were blood, urine, tracheal secretions/tips, pus and Foley tip cultures received in the microbiology laboratory from MICU, SICU, CCU and PICU. Samples were cultured on the appropriate media and observed after the required period. Results: High levels of contamination (58.03%) were identified on a wide range of healthcare equipment. The total of infected patients were 37.6%. Most common infection site was the respiratory tract. Acinetobacter spp. was the most predominant isolate among patients in MICU, SICU and CCU while Klebsiella spp. was the predominant isolate from the PICU. Conclusion: A significant degree of contamination is observed across a diverse array of healthcare equipment. Nevertheless, the prevalence of contaminated instruments and the subsequent potential for acquiring a healthcare-associated infection (HAI) can be significantly mitigated through the consistent implementation of cleaning, disinfection, and sterilization protocols for medical equipment. Keywords: hospital acquired infections, Contamination, equipment, pathogens.

Patient satisfaction in inpatient psychiatric treatment compared with inpatient equivalent home treatment in Germany: an in-depth qualitative study.

Inpatient treatment (IT) is the predominant form of psychiatric care in Germany and worldwide, whereby forms of psychiatric treatment have mainly evolved in the direction of home services. Inpatient equivalent home treatment (IEHT) is a new and additional pillar of psychiatric acute care provision legally embedded since 2018 in Germany. The aim of this study was to conduct an in-depth exploration as little qualitative research has been performed so far in Germany to examine possible differences in patient satisfaction with IT compared with IEHT. In the current qualitative study, N = 9 patients of a German hospital providing IT and IEHT were interviewed with the problem-centered interview. Inclusion criteria were IT or IT with subsequent IEHT. The theoretical sampling method was applied to select test persons in the research process. The experiences of the participants during their psychiatric treatment were analyzed using a qualitative content analysis. The results of both types of psychiatric treatment refer to different satisfaction factors during the treatment period. The function of fellow patients, the setting of the treatment, the conditions in place, and the relationship to relatives turn out to be pivotal for patient satisfaction. In addition, the quality of the therapy and relationship to caregivers itself can have an impact on patient satisfaction, particularly by shared decision making. During the IEHT, patient satisfaction can be strengthened by the possibility to handle daily tasks, to be close to relatives, while not so close to fellow patients, whereas IT patients are mostly satisfied because of the distance to their everyday life and the closeness to fellow patients. The choice of the form of psychiatric treatment according to the individual needs of the patients seems to be one key driver that can in turn increase patient satisfaction. In addition, a clean and hygienic environment seems to be critical for our respondents as a lack of it is one of the reasons to drop out of treatment. Despite its limitations, this hypothesis-generating study is one of the first investigating German IEHT in comparison with IT in an in-depth qualitative approach contributing to a patient-oriented and cost-effective psychiatric treatment. Although hospitals are highly complex organizations and therefore not directly comparable, other German and international providers of IEHT may derive several generic success factors from this study for the development and improvement of patient satisfaction.

The Europa Uomo Patient Reported Outcome Study 2.0—Prostate Cancer Patient-reported Outcomes to Support Treatment Decision-making

BackgroundTo further strengthen the voice of patients, Europa Uomo initiated the Europa Uomo Patient Reported Outcome Study 2.0 (EUPROMS 2.0) in October 2021. ObjectiveTo collect the self-reported perspective of prostate cancer (PCa) patients on physical and mental well-being after PCa treatment outside a clinical trial setting to inform future fellow patients about the impact of PCa treatment. Design, setting, and participantsEuropa Uomo invited PCa patients to complete a cross-sectional survey including the validated EQ-5D-5L, EORTC-QLQ-C30, and the EPIC-26 questionnaires. Furthermore, the nine-item Shared Decision Making Questionnaire (SDM-Q-9) and diagnostic clinical scenarios were included. Outcome measurements and statistical analysisDescriptive statistics was used to assess the demographic and clinical characteristics and to analyze the patient-reported outcome data. Results and limitationsBetween October 25, 2021 and January 17, 2022, 3571 men from 30 countries completed the EUPROMS 2.0 survey. The median age of respondents was 70 yr (interquartile range 65–75 yr). Half of the respondents underwent one treatment, most often radical prostatectomy. Men who are treated actively experience lower health-related quality of life than men on active surveillance, mainly regarding sexual function, fatigue, and insomnia. Lower urinary incontinence levels were seen for men who underwent radical prostatectomy (single treatment or in combination with other treatments). Of the respondents, 42% indicated that the determination of the prostate-specific antigen (PSA) value was part of a routine blood test; 25% wanted to undergo screening/early detection for PCa, and 20% indicated that the determination of the PSA value had a clinical reason. ConclusionsA large sample of 3571 international patients has contributed patient experience after PCa treatment in the EUPROMS 2.0 study, confirming that treatment for PCa mainly affects urinary incontinence, sexual function, fatigue, and insomnia. Such information can be used to direct toward a better patient-doctor relationship, to offer patients ready access to responsible information and a better understanding of their disease and treatment. Patient summaryThrough the EUPROMS 2.0 survey, Europa Uomo has strengthened the voice of the patient. Such information can be used to inform future prostate cancer (PCa) patients about the impact of PCa treatment and to engage them in informed and shared decision-making.