Psychological Well-being Of Patients Research Articles

The Aesthetics of Digit Amputation.

Background: The goal of surgery, when treating a patient with a traumatized hand, is to restore function. The importance of the aesthetics on a patient's psychological well-being should also be considered. The biomechanical ideals for creating a useful hand after digit amputation have been defined; however, ideal aesthetic levels for finger amputation have not been elucidated. The purpose of this study was to determine the general population's visual preferences for different levels of digit amputation in the hand. Methods: In all, 310 participants were surveyed to identify preferences of different levels of single digit amputations in dorsal and volar views. A normal hand was digitally manipulated to simulate various levels of digit amputation. The aesthetics of amputation at the distal interphalangeal (DIP) joint, proximal interphalangeal (PIP) joint, metacarpophalangeal (MCP) joint, and ray amputation were compared to one another via rank order. Average rank for each level of amputation for a digit was determined. Results: Amputation at the DIP was favored over all other levels; however, ray amputation was the second most aesthetic, particularly in the middle and ring fingers even when compared to amputation at the PIP level. Conclusion: When presented a choice at which level to perform a completion amputation or a primary amputation of a digit, and functionality at multiple levels of amputation is equivocal, aesthetic outcomes should be considered. Amputation at the DIP joint is preferable, but ray amputation is aesthetically more pleasing than amputation at the PIP or MCP joints in the index, middle, ring, and small fingers.

Psychological well-being in patients undergoing stem cell transplantation

The aim of the study is to determine the psychological well-being of patients who underwent stem cell transplantation. This cross-sectional study was conducted with 100 patients. Data were collected face-to-face using an introductory information form and the Brief Symptom Inventory. When the results of the patients were examined, the interpersonal sensitivity of the sub-dimensions of the scale was found to be 5.0 ± 4.06, depression 7.60 ± 5.37, and anxiety disorder 7.90 ± 5.34. There was a significant difference between the diagnosis time of the patients and all sub-factors of the scale, except phobic anxiety. It was found that the psychological state of the patients was directly related to the time of first diagnosis. As a result, the importance of following the psychological process of the patients during the treatment process was revealed when planning nursing care.

Feasibility and outcomes of a general practice and specialist alcohol and other drug collaborative care program in Sydney, Australia.

Alcohol and other drug (AoD) use is an important health and community issue and may be positively affected by collaborative care programs between specialist AoD services and general practice. This paper describes the feasibility, model of care and patient outcomes of a pilot general practice and specialist AoD (GP-AoD) collaborative care program, in Sydney, Australia, based on usual care data, the minimum data set, service utilisation information and the Australian Treatment Outcome Profile (ATOP), a patient-reported outcome measure. There were 367 referrals to the collaborative care program. GPs referred 210 patients, whereas the AoD service referred 157 patients. Most GP referrals (91.9%) were for AoD problems, whereas nearly half the AoD service referrals were for other issues. The primary drugs of concern in the GP group were either opioids or non-opioids (mostly alcohol). The AoD service-referred patients were primarily using opioids. An ATOP was completed for 152 patients. At the time of referral, those in the GP-referred non-opioid group were significantly less likely to be abstinent, used their primary drug of concern more days and were more likely to be employed (all P < 0.001). A second ATOP was completed for 93 patients. These data showed a significant improvement in the number of days the primary drug of concern was used (P = 0.026) and trends towards abstinence, improved quality of life and physical and psychological well-being for patients in the program. There are few studies of GP-AoD collaborative care programs and nothing in the Australian context. This study suggests that GP-AoD collaborative care programs in Australia are feasible and improve drug use.

Biopsychosocial impact on caregivers of head and neck cancer patients undergoing radiotherapy at a tertiary care hospital.

IntroductionPatients diagnosed with head and neck cancer are often subjected to an array of unprecedented challenges, which have seldom been scrutinized in other cancers, such as prolonged restrictions in their capaci-ty to breathe, speak, and swallow, considerable deformity, and an alleviated risk of death. These predicaments have consequential repercussions on the psychological well-being of patients, and they debilitate the mental, social, and financial facet of not only the patient’s but also of the caregiver’s lives, placing them in a state of constant uncertainty while also deteriorating their physical and mental health. Aim of the study was to assess the burden on the caregiver and their quality of life (QOL) using the Caregiver Quality of Life Index-Cancer (CQOLC) scale by comparing the sali-vary cortisol levels of caregivers at different intervals of the radiotherapy session.Materials and methodsThe current study was a prospective cohort study conducted on 28 caregivers of patients undergoing radiotherapy, aged 15 years and more. The entire collection of saliva samples of each of the caregivers was collected on day 1, day 14, and day 21 of the radiotherapy session while simultaneously handing out the CQOLC for them to fill out. The samples were later analysed using an ELISA kit to measure the cortisol levels.ResultsOn day 1 the QOL score was 1.97 ±0.28, on day 14 the QOL score was 2.53 ±0.31, and on day 21 the QOL score was 3.15 ±0.26, with a p-value of 0.0001 over the entire session. There was no statistically significant change in the salivary cortisol level. P < 0.05 is considered statistically significant.ConclusionsThe assessed quality of life portrayed a progressive decline over the calculated period, concluding that the radiotherapy sessions of the patients subjected the caregivers to distress. It was also found that the males had a noteworthy diminution in QOL compared to the females; however, there was no signifi-cant change in the cortisol level over the calculated period.

Trichloroacetic Acid Paint for Boxcar and Polymorphic Acne Scars.

Scarring is a common complication of acne vulgaris with a significant impact on the psychological well-being of patients. Focal application of high concentration trichloroacetic acid (TCA) has been proven efficacious in treating ice-pick scars, but the utility in other scar types is understudied. The aim of this study is to evaluate the efficacy and safety of 90% TCA in boxcar and polymorphic acne scars using a novel brush applicator. Forty-one patients with acne scars were recruited for treatment of boxcar and polymorphic scar with 90% TCA applied with a cosmetic brush. Each patient received 3 treatment sessions spaced between 7 and 9 weeks apart. All participants had good to excellent outcomes as per Jacob and colleagues grading. Patients with skin Type 3 to 6 had more excellent outcomes (13 patient, 59%) than patients of skin type 1 to 2 (9 patients, 41%). Two participants (5%) had postprocedural complications. Five participants (14%) were on concomitant isotretinoin with no appreciable increase in reepithelialization time or rate of complications. Focal 90% TCA with a cosmetic brush applicator is safe and effective in treating boxcar and polymorphic scars. The clinical outcome is good to excellent with low rates of complication.

Impact of chronic and recurrent dermatophytosis on quality of life and psychologic morbidity-a cross-sectional study.

Chronic and recurrent dermatophytosis is adversely effecting the psychosocial well-being of patients. To assess the impact of chronic and recurrent dermatophytosis on quality of life and psychological well-being of patients. We performed a cross-sectional study on patients of chronic and recurrent dermatophytosis aged >12years. Clinical diagnosis was done, followed by appropriate investigations when required. The patients were made to fill up the questionnaires on Dermatology Life Quality Index, Hospital Anxiety and Depression Scale, and Perceived Stress Scale in English and local languages. The responses were coded with 4-point Likert scale. Statistical analysis was done using MedCal® V.125.0. Data of 123 patients were analyzed. Mean DLQI score was 21.4±5.6 and main domain affected was "symptoms and feelings." CRD had an "extremely large effect" on QoL (DLQI score 21-30) in 55.3% patients. Mean HADS-A(anxiety) score was 10.1±3.6, and mean HADS-D(depression) score of participants was 7.8±3.2. Mean perceived stress scale (PSS) score was 18.8±4.3. Involvement of >1site was a risk factor for higher DLQI score suggestive of "extremely large impact" on QoL (OR 34.02,95% CI 5.7-203.2,p=0.0001), higher/worsened HADS-A score (OR 5.4, 95% CI 1.2-22.9, p=0.02), and higher/worsened PSS score (OR 6.1, 95% CI 1.1-34.1, p=0.04). Persistent disease >1year (OR 11.5, 95% CI 1.9-67.8, p=0.007) and male gender (OR 0.3, 95% CI 0.1-0.8, p=0.01) were significant risk factors for anxiety while BSA involvement >10% was a significant risk factor for moderate to severe perceived stress(OR 13.9, 95% CI 1.5-130.7, p=0.02). Chronic and recurrent dermatophytosis requires a multidisciplinary approach involving psychiatrists, to reduce the psychological burden.

THE TRANSITION OF ADOLESCENTS TO ADULT NEPHROLOGY CARE: A SURVEY ON YOUNG ADULTS’ EXPERIENCE

Objective: As increasing number of young people with renal diseases are reaching adulthood and issues related to their transition to adult units are getting more important. Failure to transfer adolescents under a well-designed transfer program can lead to a decline in attendance to an adult unit. We aim to share our experience and the views of the patients who went through a transition program. Material and Methods: We conducted a telephone questionnaire with 88 patients, who were asked to evaluate their concerns before their transition and their experience during the visit in the adult nephrology unit after the transition process. Results: The mean age of participants was 19.21±0.97 years. Thirty patients (34%) had chronic kidney disease, and three of them were on dialysis. Three patients (3.4%) had a renal transplant at the time of transition. Fifty-one patients (58%) were felt anxious before the transition process. After their transfer to the adult unit, although 84 patients (95.5%) were satisfied to be in the adult unit, there were still 65 patients (74%) ready to return to the pediatric unit, if it was possible. Conclusion: Transition to the adult unit is still a cause of concern for adolescent patients, even if they are transferred under a well-designed program. It is important to raise awareness about transition programs among pediatricians and to develop a pediatric-adult transition program for the medical and psychological well-being of patients.

THE TRANSITION OF ADOLESCENTS TO ADULT NEPHROLOGY CARE: A SURVEY ON YOUNG ADULTS’ EXPERIENCE

Objective: As increasing number of young people with renal diseases are reaching adulthood and issues related to their transition to adult units are getting more important. Failure to transfer adolescents under a well-designed transfer program can lead to a decline in attendance to an adult unit. We aim to share our experience and the views of the patients who went through a transition program. Material and Methods: We conducted a telephone questionnaire with 88 patients, who were asked to evaluate their concerns before their transition and their experience during the visit in the adult nephrology unit after the transition process. Results: The mean age of participants was 19.21±0.97 years. Thirty patients (34%) had chronic kidney disease, and three of them were on dialysis. Three patients (3.4%) had a renal transplant at the time of transition. Fifty-one patients (58%) were felt anxious before the transition process. After their transfer to the adult unit, although 84 patients (95.5%) were satisfied to be in the adult unit, there were still 65 patients (74%) ready to return to the pediatric unit, if it was possible. Conclusion: Transition to the adult unit is still a cause of concern for adolescent patients, even if they are transferred under a well-designed program. It is important to raise awareness about transition programs among pediatricians and to develop a pediatric-adult transition program for the medical and psychological well-being of patients.

Anxiety in patients post-fractured neck of femur (NOF). Is there a place for basic psychological techniques?

Purpose: Psychological well-being of patients with post-traumatic injury is often not fully addressed. Yet our ability to progress patients and engage them in rehabilitation can be hugely influenced by psychological factors such as anxiety. Patients post fractured NOF often experience complications affecting multi-systems including delirium, chest infection, acute kidney injury and postural hypotension, all of which can delay mobilisation and impact on psychological well-being.

Spiritual Emotional Freedom Technique against Anxiety and Psychological Well-being of Type 2 DM Patients during the COVID-19 Pandemic

BACKGROUND: The COVID-19 pandemic makes patients with type 2 diabetes mellitus experience an increase in anxiety, considering that diabetes mellitus is one of the dangerous comorbidities for people infected with the COVID-19 virus so that it affects their psychological well-being. Low psychological well-being will have an impact on decreasing self-care, thereby increasing the occurrence of complications. AIM: The purpose of this study was to analyze the effect of the spiritual emotional freedom technique (SEFT) on anxiety and the psychological well-being of patients with type 2 DM during the COVID-19 pandemic. METHODS: The research design employed is a quasi-experimental research with the untreated control group design with dependent pre-test and post-test samples. The sampling technique used is probability sampling which is a random sampling to meet the inclusion and exclusion criteria with a total sample of 110 respondents with the distribution of the intervention group consisting of 55 respondents and the control group consisting of 55 respondents. The instrument used to measure the level of anxiety is the Hamilton Rating Scale for Anxiety and psychological well-being of Ryff’s psychological well-being. The statistical tests used are Paired Sample t-Test and Independent t-test with significant p &lt; 0.05. RESULTS: The results showed that the mean level of anxiety in the intervention group before the implementation of the intervention was 21.89 (moderate), while after the intervention was 10.98 (mild) and the psychological well-being before the intervention was 147.49 (low), while after the intervention was 170.91 (moderate). Furthermore, in the case of the control group, the mean level of anxiety before the intervention was 19.16 and after the intervention was 19.11 and psychological well-being before the intervention was 146.67 while after the intervention was 146.45. Furthermore, the data analysis obtained that the SEFT affected the level of anxiety and psychological well-being of patients with type 2 diabetes during the COVID-19 pandemic with p = 0.00. CONCLUSION: The SEFT that is routinely implemented can reduce the level of anxiety so that it can improve the psychological well-being of patients with type 2 DM during the COVID-19 pandemic.

Psychosocial Effects of the COVID-19 Pandemic on Patients With Schizophrenia and Their Caregivers.

The aim of this study was to analyze the psychosocial effects of the COVID-19 pandemic on 120 patients with schizophrenia, and their caregivers (control group), in the city of Arica, northern Chile. The hypotheses of this study hold that (1) self-reports of the impact of the COVID-19 pandemic among patients and caregivers would be positively correlated, (2) caregivers would self-report a greater impact of the pandemic on their daily lives, and (3) patients infected with COVID-19 would experience lower levels of mental health improvement and higher levels of psychological distress. Hypotheses were tested using correlations, mean differences, and effect sizes (Cohen’s d). The results showed that patients with schizophrenia who had been in quarantine for almost a year showed similar levels of concern as their caregivers in the domains of health and social life. However, caregivers showed significant differences from patients in the areas of income, concern, and employment status. In addition, patients who were infected with COVID-19 showed lower levels of well-being and worse psychological recovery. The implications of the findings highlight the need to incorporate mental health interventions in the pandemic health context for caregivers of people with schizophrenia. Finally, the results suggest that Covid-19 infection has a significant effect on the recovery and psychological well-being of patients with schizophrenia.

Relative Frequency of OCD in People with Malocclusion Class I Requiring Orthodontic Treatment

Introduction: The Malocclusion or misalignment of teeth affects not only oral function but also facial esthetics and the psychological well-being of patients. In addition, obsessive-compulsive disorder is a psychological disorder associated with anxiety involving 2-2.5% of the population during their life. This study aimed to assess the severity of obsessive-compulsive disorder in patients having class I malocclusion with crowding. Materials &amp; Methods: In this case-control trial, Using the Yale-Brown questionnaire, female patients with 18-22 years old of ages having class I crowding malocclusion and referring to orthodontic department of Azad Dental school enrolled in the trial as the case group (n = 60). The participants with similar malocclusion without reference for orthodontic treatments followed up as the control group (n = 60). The obtained data by Yale-Brown questionnaire classified the obsessive-compulsive disorder in the participants into four groups of mild, fairly mild, moderate and severe levels. The results of the two groups were analyzed using the Chi-square test (p value &lt; 0.05). Results: In malocclusion patients referring for orthodontic treatments, 19 (31.7%) had mild OCD; 7 (11.7%) had fairly mild OCD; 23 (38.3%) had moderate OCD and 11 (18.3%) showed severe OCD. These values were 28 (46.7%); 12 (20.0%); 15 (25.0%) and 5 (8.3%) for malocclusion patients not referring for orthodontic patients respectively. No significant differences were found among 2 groups regarding severity of OCD (p value = 0.07). Conclusion: In terms of the severity of OCD, there were no significant variations between malocclusion patients with and without referring for orthodontic treatments.

Stress effect of COVID-19 pandemic among Egyptian children and adolescents with malignancy

Background Thoughts and feelings of stress and worry are common for any person facing the challenges of a serious illness. Aim The aim was to assess the effect of COVID-19 on the psychological well-being of patients with malignancy compared with age-matched and sex-matched controls and to compare the psychological effect of COVID-19 with the psychological effect of malignancy among the patient group. Patients and methods This case–control study included 46 participants diagnosed with malignancy who were compared with 45 healthy age-matched and sex-matched individuals serving as a control group. Their ages were more than 8 years. All patients and controls were subjected to history taking with an emphasis on age, sex, educational level, history of chronic medical illness in the family, disease status, physical symptoms during the last 14 days, and data about COVID-19 infection. The psychological effect was measured using the Children's Revised Impact of Event Scale Crises-13. Results Mean age of the patient group was 11.76±3.31 years. There were 30 male and 16 female in the case group, who were compared with 45 age-matched and sex-matched healthy children and adolescents. There was a significantly higher prevalence of psychological stressful effect among the healthy children group than the oncological pediatric patients. The psychological effect related to malignancy diagnosis was significantly higher than the psychological effect related to COVID-19. Conclusion COVID-19 pandemic is a stressful event; however, the psychological effect related to cancer diagnosis among the oncological patients showed a higher stressful effect.

Специфика психологического функционирования пациентов с интерстициальным циститом

Introduction. The use of psychotherapeutic strategies may be preferable for patients with interstitial cystitis, who do not respond to psychopharmacotherapy and even after somatotropic therapy. therapy, surgical interventions continue to experience uncomfortable sensations. However, many urologists, given the presence of the psychosocial etiology of cystitis in some patients, continue to advocate surgical treatment. Goal. Familiarizing urologists, gynecologists, and mental health professionals with the fact that cystitis consists of heterogeneous subtypes with corresponding pathogenic pathways, comorbid mental disorders, and emotional characteristics. Among these subtypes, the psychosocial phenotype should be distinguished, which has its own specifics, psychodynamics and requires appropriate complex treatment tactics. Materials and methods. 35 women from 25 to 48 years old suffering from recurrent cystitis for 7-12 years and 35 women without urological disorders. The following diagnoses are observed in patients: somatoform autonomic dysfunction of the genitourinary system (F45. 34); psychological factors in chronic recurrent cystitis (F54); recurrent depressive disorder, an episode of moderate severity (F33.1). The patients were examined using the questionnaire of the severity of psychopathological symptoms (SCL-90-R) and the scale of diagnosis of early maladaptive schemes (YSQ S3R). Results. The psychosocial phenotype of cystitis is represented by high somatization, the presence of obsessive-compulsive traits, interpersonal sensitivity, a tendency to develop depression and an anxiety spectrum of disorders. Among the maladaptive cognitive behavioral patterns, the following predominate: negativism/ pessimism, search for approval, feeling of vulnerability, lack of self-control, submission, self-sacrifice, feeling of abandonment and instability, distrust of other people. Conclusion. In addition to psychopharmacotherapy for the treatment of anxiety and depressive symptoms in patients with cystitis, psychotherapy aimed at minimizing difficulties in emotional awareness (alexithymia) and unresolved childhood trauma of relationships should be included in the treatment program. Multimodal psychodynamic psychotherapy and cognitive behavioral therapy can reduce symptoms, affect the immune and nervous systems, and the psychological well-being of patients with cystitis.

1718P Quality of life of patients with cancer and their family caregivers at the University of the Philippines – Philippine General Hospital Cancer Institute using the WHO Quality of Life-BREF Filipino

Cancer influences the quality of life of cancer patients and their family caregivers. Cancer is a social experience affecting the physical, social and psychological well-being of patients and their caregivers. This study determined the quality of life of patients with cancer and their family caregivers, identified factors associated with patient and caregiver QoL, and explored the patient-caregiver dyadic relationship.

The psychological impact of gestational trophoblastic disease: a prospective observational multicentre cohort study.

ObjectiveTo evaluate the short‐term psychological consequences of gestational trophoblastic disease (GTD).DesignA prospective observational multicentre cohort study.SettingNationwide in the Netherlands.PopulationGTD patients.MethodsOnline questionnaires directly after diagnosis.Main outcome measuresHospital Anxiety and Depression Scale (HADS), Distress Thermometer (DT), Impact of Event Scale (IES) and Reproductive Concerns Scale (RCS).ResultsSixty GTD patients were included between 2017 and 2020. Anxious feelings (47%) were more commonly expressed than depressive feelings (27%). Patients experienced moderate to severe adaptation problems in 88%. Patients who already had children were less concerned about their reproductivity than were patients without children (mean score 10.4 versus 15.0, P = 0.031), and patients with children experienced lower distress levels (IES mean score 25.7 versus 34.7, P = 0.020). In addition, patients with previous pregnancy loss scored lower for distress compared with patients without pregnancy loss (IES mean score 21.1 versus 34.2, P = 0.002).DiscussionWe recommend that physicians monitor physical complaints and the course of psychological wellbeing over time in order to provide personalised supportive care in time for patients who have high levels of distress at baseline.ConclusionsGTD patients experience increased levels of distress, anxiety and depression, suggesting the diagnosis has a substantial effect on the psychological wellbeing of patients. The impact of GTD diagnosis on intrusion and avoidance seems to be ameliorated in patients who have children or who have experienced previous pregnancy loss.Tweetable abstractPatients with gestational trophoblastic disease (GTD) experience short‐term psychological consequences such as distress, anxiety and depression, suggesting that the diagnosis GTD has a substantial effect on the psychological wellbeing of patients. Various patient characteristics affect the impact of GTD diagnosis.

The Relationship between Social Loneliness and Psychological Well-being in Patients with Multiple Sclerosis: The Moderating Role of Self-compassion

Introduction: Loneliness is a common experience in people with Multiple Sclerosis (MS) which is associated with significant psychological consequences. Therefore, it is important to examine the psychological status of these patients. The aim of this study was to determine the moderating role of self-compassion in the relationship between social loneliness with psychological well-being in patients with multiple sclerosis. Method: For this descriptive-correlational study, 200 patients with MS were selected by a convenience sampling method in the years 2019-2020. Data was collected by social loneliness of Besharat MA (2018), Self-compassion Scale of Neff KD (2003), and Psychological Well-Being Scales of Ryff's (1989). The Pearson correlation coefficient and multiple regression analysis (hierarchical method) were used for data analysis and data were analyzed using SPSS software version 23. Results: The results showed that there was a significant negative correlation between social loneliness with psychological well-being and self-compassion. There was a significant positive correlation between psychological well-being and self-compassion. On the other hand, the results of the hierarchical regression analysis showed that self-compassion moderates the relationship between social loneliness and psychological well-being. Conclusion: Findings revealed that self-compassion can protect people with MS from the negative psychological and social consequences associated with the disease. Therefore, self- compassion can be used as a factor in adapting to the disease and improving psychosocial health.

Neuropsychological deficits have only limited impact on psychological well-being in amyotrophic lateral sclerosis

ObjectiveTo investigate the association between neuropsychological deficits and psychological well-being in amyotrophic lateral sclerosis (ALS).MethodsSubjective (Schedule for the Evaluation of the Individual Quality of Life-Direct Weighting, SEIQoL-DW) and global quality of life (QoL; Anamnestic Comparative Self-Assessment, ACSA) as well as depression (ALS-Depression-Inventory, ADI-12) as indicators for psychological well-being were measured in 214 patients with ALS and correlated with neurocognitive performance assessed by the Edinburgh Cognitive and Behavioural ALS Screen (ECAS). Primary caregivers evaluated behaviour. Patients were classified to be cognitively (ALSci) or behaviourally impaired (ALSbi) according to Strong criteria.ResultsALSbi patients had poorer psychological well-being than patients without behavioural alterations, while the psychological well-being of patients with and without neurocognitive deficits was comparable.ConclusionThe study provides evidence that minor neuropsychological deficits do not interfere with psychological well-being of ALS in contrast to alterations on behavioural level. Thus, abnormalities in individual cognitive domains have limited relevance for the patients’ everyday life in comparison to the impact of behavioural alterations.

A qualitative systematic review protocol to examine the experiences and needs of informal caregivers of patients with glioma.

Gliomas are the most common primary malignant brain tumors in adults. It has a devastating impact on the cognitive, physical, social, and psychological well-being of patients. Informal caregivers refer to family members, friends, and other carers of the patient who provide unpaid care for patients. They provide physical and psychological support for patients and the family during the disease process. Despite this, there is a paucity of knowledge regarding the experiences and needs of glioma caregivers across the disease trajectory. A systematic review will be conducted to identify the experiences and needs of informal caregivers of patients with glioma. Seven English databases and four Chinese databases will be analyzed. The search is limited to peer-reviewed full-text articles published either in English or Chinese, with no restrictions on the publication period. According to the Joanna Briggs Institute (JBI) manual for evidence synthesis, two independent reviewers will apply the JBI Critical Appraisal Checklist for Qualitative Research to evaluate the methodological quality of each study. The JBI meta-aggregation method will subsequently be used to synthesize the data, eventually forming themes, categories, and findings. The systematic review is expected to be the first qualitative synthesis of evidence pertains to the experience of family caregivers for glioma patients. The findings generated from the systematic review may be rewarding for researchers to improve care and quality of life for glioma patients and their family members. PROSPERO CRD42020222307.

Perspectives and Emotional Experiences of Patients With Chronic Myeloid Leukemia During ENESTPath Clinical Trial and Treatment-Free Remission: Rationale and Protocol of the Italian Substudy.

Achievement of deep molecular response following treatment with a tyrosine kinase inhibitor (TKI) allows for treatment-free remission (TFR) in many patients with chronic myeloid leukemia (CML). Successful TFR is defined as the achievement of a sustained molecular response after cessation of ongoing TKI therapy. The phase 3 ENESTPath study was designed to determine the required optimal duration of consolidation treatment with the second-generation TKI, nilotinib 300 mg twice-daily, to remain in successful TFR without relapse after entering TFR for 12 months. The purpose of this Italian ‘patient’s voice CML’ substudy was to evaluate patients’ psycho-emotional characteristics and quality of life through their experiences of stopping treatment with nilotinib and entering TFR. The purpose of the present contribution is to early present the study protocol of an ongoing study to the scientific community, in order to describe the study rationale and to extensively present the study methodology. Patients aged ≥18 years with a confirmed diagnosis of Philadelphia chromosome positive BCR-ABL1+ CML in chronic phase and treated with front-line imatinib for a minimum of 24 months from the enrollment were eligible. Patients consenting to participate the substudy will have quality of life questionnaires and in-depth qualitative interviews conducted. The substudy will include both qualitative and quantitative design aspects to evaluate the psychological outcomes as assessed via patients’ emotional experience during and after stopping nilotinib therapy. Randomization is hypothesized to be a timepoint of higher psychological alert or distress when compared to consolidation and additionally any improvement in health-related quality of life (HRQoL) due to nilotinib treatment is expected across the timepoints (from consolidation, to randomization, and TFR). An association is also expected between dysfunctional coping strategies, such as detachments and certain personality traits, and psychological distress and HRQoL impairments. Better HRQoL outcomes are expected in TFR compared to the end of consolidation. This substudy is designed for in-depth assessment of all potential psycho-emotional variables and aims to determine the need for personalized patient care and counselling, and also guide clinicians to consider the psychological well-being of patients who are considering treatment termination.NCT number: NCT01743989, EudraCT number: 2012-005124-15