Needs and Experiences With Health Care Providers of Adult Rare Disease Patients and Caregivers of People With Rare Diseases: Protocol for a Qualitative Study.

BACKGROUND: Rare diseases in Europe are defined as diseases with a prevalence of less than 5 per 10,000 people. Despite their individual rarity, the total number of rare diseases is considerable. Rare diseases are often chronic and complex, affecting physical, mental, and neurological health. People with rare diseases face challenges such as delayed diagnosis, limited medical support, and financial burden. Caregivers, usually family members, bear significant physical and emotional burdens. Understanding the experiences of patients with rare disease and their caregivers is critical to effective care, but this is still underresearched. Better support and understanding of the challenges faced by both patients and caregivers is clearly needed. Our study will explore the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. OBJECTIVE: This study aims to explore the experiences of patients with rare disease and their caregivers with Slovenian health care providers and to create a theoretical model of needs and experiences. METHODS: This is a qualitative thematic analysis study, using the codebook approach. The study will conduct semi-open-ended interviews to understand the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. The interview questions will be based on an extensive literature review. Data from the interviews will be analyzed using thematic analysis to identify patterns and build a thematic map. Data will be analyzed by at least 2 coders. To ensure reliability, respondent validation will be conducted and negative cases investigated. Any discrepancies will be resolved by consulting the entire research team until a consensus is reached. RESULTS: This study was not specifically funded. However, author TC is supported by grant number P3-0339 from the Slovenian Agency for Research and Innovation. This study was approved by the Medical Ethics Committee of the Republic of Slovenia (0120-47/2022/3), and recruitment is expected to begin in May 2024, with data analysis results anticipated by the end of 2025. CONCLUSIONS: This study will fill an important research gap in Slovenia by exploring the needs and experiences of people living with rare diseases and their caregivers. The results will contribute to the broader field of rare diseases and add knowledge that can inform future research processes and intervention strategies. It also aims to identify neglected areas that have a significant impact on the lives of people with rare diseases. This study is important not only because it addresses the immediate needs of the Slovenian rare disease community, but also because it contributes to a discussion on patient-centered care, health policy design, and the inclusion of psychosocial components in health care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/53362.

Assessing the reliability and validity of the Slovenian version of the Appraisal of Diabetes Scale (ADS-S) in type 2 diabetes patients.

Managing type 2 diabetes (T2D) effectively is a considerable challenge. The Appraisal of Diabetes Scale (ADS) has proven valuable in understanding how individuals perceive and cope with their condition. This study aimed to evaluate the psychometric properties of the Slovenian version of ADS (ADS-S). We recruited a sample of 400 adult individuals with T2D from three primary healthcare centers in Slovenia, ensuring an average of 57 cases per individual item. The psychometric evaluation included internal consistency, test-retest reliability, construct validity, and discriminant validity. Confirmatory factor analysis (CFA) was additionally performed to evaluate the fit of one- and two-factor models. After excluding incomplete questionnaires, 389 individuals participated, averaging 72.0±7.5 years, with 196 men and 193 women. ADS-S exhibited acceptable internal consistency (Cronbach's α = 0.70) and strong test-retest reliability (interclass correlation = 0.88, p <0.001). Criterion validity was established through significant correlations between ADS-S score and EQ-5D utility score (r = -0.34, p <0.001), EQ-VAS score (r = -0.38, p <0.001), and HbA1c >7.5% (r = 0.22, p = 0.019). Discriminant validity assessment found no significant correlation between ADS-S score and age, but a significant correlation with female gender (r = 0.17, p = 0.001). CFA results supported a two-factor structure (psychological impact of diabetes and sense of self-control) over a one-factor structure, as indicated by model fit indicators. ADS-S stands as a valid and reliable tool for assessing psychological impact and self-control in Slovenian T2D patients. Future research should explore adding items for capturing secondary appraisal of diabetes and studying the influence of female gender on ADS scores.

Symptoms of Anxiety and Depression Among Slovenian Breast Cancer Survivors Post-Treatment During the COVID-19 Pandemic: A Cross-Sectional Study.

Background: Although anxiety and depression are important determinants of mental health, the literature in this area is sparse as most studies focus on the period during treatment. Mental health problems can affect cancer recovery as well as quality of life and survival. In this cross-sectional study, we investigated the prevalence of anxiety and depression in Slovenian cancer survivors after treatment and assessed the associated correlates during the COVID-19 pandemic. Methods: From September 2021 to January 2022, we collected data from 430 breast cancer survivors one to five years after receiving post-local treatment and (neo)adjuvant chemotherapy. We used the Hospital Anxiety and Depression Scale (HADS) to measure anxiety and depression levels. Multivariate linear regression was used to identify factors associated with higher levels of anxiety and depression. Results: Key findings from this study are increased levels of psychological distress and identification of relevant factors associated with those elevated levels. Approximately one-third of breast cancer survivors exhibited symptoms of elevated anxiety and depression, with one in eight meeting clinical thresholds. Multivariate linear regression revealed that age, lower quality of life, heightened fear of cancer recurrence (FCR), reduced resilience, limited social support, and unmet psychosocial and emotional needs correlated with increased anxiety symptoms. Additionally, lower quality of life, higher FCR, diminished resilience, and limited social support were associated with higher depression symptomatology. Conclusions: Our study of Slovenian breast cancer survivors one to five years post-treatment observed a significant increase in anxiety and depression symptoms, possibly exacerbated by the COVID-19 pandemic. The demographic and psychosocial factors identified in this study offer valuable insights for future research. The study emphasises the importance of recognising and addressing the psychological needs of breast cancer survivors and the need to follow them throughout their cancer journey.

The safety of patient management in family medicine in Slovenia during Covid-19: a cross-sectional study.

BACKGROUND: During the Covid-19 pandemic, family medicine practices (FMPs) changed to improve safety against new coronavirus infections for both patients and employees. Protocols for treating patients with suspected Sars-Cov-2 infections were established to protect medical staff and other patients from being infected. However, these protocols also led to increased safety risks, such as delays in treating patients with other medical conditions. This exploratory study aimed to investigate safety risks in treating patients in FMPs during the Covid-19 pandemic and to suggest improvements to prevent Covid-19 in FMPs in Slovenia. METHODS: A cross-sectional study was rolled out in FMPs in Slovenia as part of the international Pricov-19 study. Data collection on safety management during the Covid-19 pandemic in FMPs in Slovenia took place from November 2020 until January 2021 using a self-administered online survey for FP working in Slovenia. A chi-square test, ANOVA, independent samples t-test or bivariate correlation test was performed to explore associations regarding the safety of patients' management variables. RESULTS: From the 191 participating family physicians (FPs) (15.2% response rate), 54.8% reported having treated patients with fever (not Covid-19) late due to the new protocols at least once, and 54.8% reported patients with urgent conditions having been seen late at least once due to not coming. In the suburbs and rural environments FPs more often reported that at least once patient with a fever (not Covid-19) was seen late due to the protocol (p = 0.017) and more often reported that at least once patient with an urgent condition was seen late due to not coming to their FP (p = 0.017). The larger the practice, the more they reported that at least once a patient with fever (not Covid-19) was seen late due to the protocol (p = 0.012) and the more they reported at least once a patient with an urgent condition was seen late due to not coming to their FP (p = 0.012). CONCLUSION: Covid-19 affected the safety of patient management in FMP in Slovenia. The most common problem was foregone care. Therefor, protocols for chronic patient management in the event of epidemics need to be established.

Cross-sectional study examining psychometric properties of the Slovenian version of the 14-item Resilience Scale (RS-14-SL).

PURPOSE: Resilience has become an important concept in health research, addressing mental health outcomes. The purpose of this study was to translate, adapt, and evaluate psychometric properties of the Slovenian version of the 14-item Resilience Scale (RS-14), using a sample of general population and cancer survivors. METHODS: The original version of the RS-14 was first back-translated and pilot tested. The factor structure was assessed with an exploratory analysis and confirmed with a confirmatory analysis. To assess reliability, internal consistency (Cronbach's alpha) and test-retest (ICC, t student test) were determined. Measurement validity was assessed with demographic (age and gender) and psychological characteristics (symptoms of anxiety and depression and health-related quality of life). RESULTS: An exploratory factor analysis revealed one-factor solution in both samples and the fit indexes showed an acceptable model fit. Internal consistency showed excellent values (0.91-0.96), and test-retest reliability was found to be acceptable (ICC = 0.89). Significant correlations were found between RS-14 and anxiety and depression HADS subscales in Sample 1 (r = - 0.62, - 0.72 for anxiety and depression) and Sample 2 (r = - 0.43, r = - 0.51 for anxiety and depression) and the majority of EQ-5D subscales (usual activities, pain, anxiety/depression). CONCLUSION: The study showed that the Slovenian version of the RS-14 test scores is valid and stable. TRIAL REGISTRATION NUMBER: 0120-25/2019/6.

Marital status and survival in cancer patients: A systematic review and meta-analysis.

BACKGROUND: In recent years, authors have repeatedly reported on the significance of social support in cancer survival. Although overall the studies appear to be convincing, little is known about which types of social support promote better survival rates, and which subgroups of cancer patients are more susceptible to the benefits of it. The aim of this study was to identify, organize, and examine studies reporting on the significance of social support in cancer survival. METHODS: The PubMed, CINAHL and EBSCO databases were searched using the keywords social support/marital status, cancer, and survival/mortality. Where possible we used a meta-analytical approach, specifically a random effect model, in order to combine the results of the hazard ratios in studies from which this information could be obtained. When interpreting clinical relevance, we used the number needed to treat (NNT). RESULTS: Better survival was observed in married patients when compared to unmarried (single, never-married, divorced/separated, and widowed) in overall and cancer-specific survival. Gender group differences showed that the association was statistically significant only in cancer-specific survival when comparing divorced/separated male and female cancer patients (p < 0.001), thus confirming results from the previous meta-analysis. CONCLUSIONS: Being unmarried is associated with significantly worse overall and cancer-specific survival. The most vulnerable group found in our study were divorced/separated men. The results of this review can motivate physicians, oncologists, and other healthcare professionals to be aware of the importance of patients' social support, especially in the identified sub-group.

Correlation between Phenotype and Genotype in CTNNB1 Syndrome: A Systematic Review of the Literature.

The CTNNB1 Syndrome is a rare neurodevelopmental disorder associated with developmental delay, intellectual disability, and delayed or absent speech. The aim of the present study is to systematically review the available data on the prevalence of clinical manifestations and to evaluate the correlation between phenotype and genotype in published cases of patients with CTNNB1 Syndrome. Studies were identified by systematic searches of four major databases. Information was collected on patients' genetic mutations, prenatal and neonatal problems, head circumference, muscle tone, EEG and MRI results, dysmorphic features, eye abnormalities, early development, language and comprehension, behavioral characteristics, and additional clinical problems. In addition, the mutations were classified into five groups according to the severity of symptoms. The study showed wide genotypic and phenotypic variability in patients with CTNNB1 Syndrome. The most common moderate-severe phenotype manifested in facial dysmorphisms, microcephaly, various motor disabilities, language and cognitive impairments, and behavioral abnormalities (e.g., autistic-like or aggressive behavior). Nonsense and missense mutations occurring in exons 14 and 15 were classified in the normal clinical outcome category/group because they had presented an otherwise normal phenotype, except for eye abnormalities. A milder phenotype was also observed with missense and nonsense mutations in exon 13. The autosomal dominant CTNNB1 Syndrome encompasses a wide spectrum of clinical features, ranging from normal to severe. While mutations cannot be more generally categorized by location, it is generally observed that the C-terminal protein region (exons 13, 14, 15) correlates with a milder phenotype.

Factors associated with a high level of unmet needs and their prevalence in the breast cancer survivors 1-5 years after post local treatment and (neo)adjuvant chemotherapy during the COVID-19: A cross-sectional study.

Objective: To assess the prevalence of unmet needs in post-treatment breast cancer survivors and identify sociodemographic, clinical, and psychosocial variables associated with reported unmet needs during the COVID-19 pandemic. Materials and methods: In this cross-sectional study, 430 post-treatment breast cancer survivors, ranging between 1 and 5 years after the procedure, completed the Cancer Survivors' Unmet Needs (CaSUN) questionnaire from September 2021 and January 2022. The multivariate logistic analysis identified factors associated with at least one reported unmet need in the total CaSUN scale and specific domains. Results: A total of 67% of survivors reported at least one unmet need. The most frequently reported unmet needs were the lack of accessible hospital parking (43%) and recurrence concerns (39.5%). The majority of reported unmet needs relate to comprehensive care (44%), followed by the psychological and emotional support domain (35.3%). Younger age (OR = 0.95, 95% CI = 0.92-0.99; p < 0.001), three or more comorbidities (OR = 0.27, 95% CI = 0.11-0.71, p < 0.01), a lower quality of life (OR = 0.06, 95% CI = 0.01-0.47, p < 0.01) and low resilience (OR = 0.95, 95% CI = 0.93-0.99) were associated with a high level of unmet needs in the multivariate regression model. Results are presented for factors associated with a high level of unmet needs for comprehensive cancer care and psychological and emotional support domain. Conclusion: A high prevalence found in our study could be attributed to the COVID-19 pandemic, where patients may have missed adequate follow-up care, although comparing to studies done in non-pandemic time is difficult. Family physicians should be more attentive toward younger cancer survivors and those with more comorbidities as both characteristics can be easily recognized in the family practice.

Psychometric properties of the Slovenian version of the Cancer Survivors' Unmet Needs (CaSUN-SL) measure in post-treatment cancer survivors.

BACKGROUND: As the number of cancer survivors is growing, valid instruments for assessing cancer survivors' needs are required. Thus, the aim of this study was to translate and validate the Cancer Survivors Unmet Needs (CaSUN) scale. METHODS: Cancer survivors were recruited from 30 family medicine practices and separated into two samples (sample 1, n = 147; sample 2, n = 148). Factor structure was explored with an exploratory analysis in sample 1 and determined with a confirmatory analysis in sample 2. Psychometric properties were assessed with internal consistency, test-retest reliability and construct validity. RESULTS: A translation and cultural adaptation of the CaSUN scale resulted in 34 items being included in the final version. The factor structure confirmed the five-factors solution of the CaSUN-SL. Cronbach's alpha was 0.94 for the CaSUN-SL and ranged from 0.71-0.88 for specific domains. Test-retest reliability showed moderate-high stability over time. The CaSUN-SL significantly and positively correlated with anxiety (r = 0.49), depression (r = 0.44), health-related quality of life (r = 0.36), and negatively with self-perceived health (r = - 0.36) and resilience (r = - 0.47), which confirms the construct validity. In addition, we found a significant correlation between unmet needs and age (r = - 0.29), gender (r = 0.14), cancer stage (r = 0.20), cancer type (r = 0.19), and time since treatment (r = - 0.20). CONCLUSIONS: Results indicate that CaSUN-SL is a valid and reliable measure to assess the Slovenian cancer survivors' unmet, met and total needs and can be used for further prospective studies. TRIAL REGISTRATION: No. 0120-25/2019/6.

Family history tools for primary care: A systematic review.

BACKGROUND: Many medical family history (FH) tools are available for various settings. Although FH tools can be a powerful health screening tool in primary care (PC), they are currently underused. OBJECTIVES: This review explores the FH tools currently available for PC and evaluates their clinical performance. METHODS: Five databases were systematically searched until May 2021. Identified tools were evaluated on the following criteria: time-to-complete, integration with electronic health record (EMR) systems, patient administration, risk-assessment ability, evidence-based management recommendations, analytical and clinical validity and clinical utility. RESULTS: We identified 26 PC FH tools. Analytical and clinical validity was poorly reported and agreement between FH and gold standard was commonly inadequately reported and assessed. Sensitivity was acceptable; specificity was found in half of the reviewed tools to be poor. Most reviewed tools showed a capacity to successfully identify individuals with increased risk of disease (6.2-84.6% of high and/or moderate or increased risk individuals). CONCLUSION: Despite the potential of FH tools to improve risk stratification of patients in PC, clinical performance of current tools remains limited as well as their integration in EMR systems. Twenty-one FH tools are designed to be self-administered by patients.

Prospective longitudinal study on fear of cancer recurrence in patients newly diagnosed with head and neck cancer: Course, trajectories, and associated factors.

BACKGROUND: This study assessed the course of fear of cancer recurrence (FCR) in patients newly diagnosed with head and neck cancer (HNC), identified FCR trajectories and factors associated with FCR trajectories. METHODS: Six hundred and seventeen HNC patients from the NET-QUBIC cohort study completed the Cancer Worry Scale-6 at diagnosis, 3 and 6 months post-treatment. FCR trajectories were identified using Latent Class Growth Analysis. Associations were explored between FCR trajectories and baseline demographic and medical variables, coping and self-efficacy. RESULTS: Overall, FCR decreased slightly between baseline and 3 months post-treatment and remained stable up to 6 months. Two FCR trajectories were identified: "high stable" (n = 125) and "low declining" (n = 492). Patients with high stable FCR were younger, reported more negative adjustment, passive coping, and reassuring thoughts, and less avoidance. CONCLUSIONS: The majority of HNC patients have low declining FCR after diagnosis, but one in five patients experience persistent high FCR up to 6 months post-treatment.

The Impact of Psychological Interventions with Elements of Mindfulness (PIM) on Empathy, Well-Being, and Reduction of Burnout in Physicians: A Systematic Review.

Introduction: Physician's burnout has been recognized as an increasing and significant work-related syndrome, described by the combination of emotional exhaustion (EE) and depersonalization (D), together with low personal accomplishment (PA). It has many negative consequences on personal, organizational, and patient care levels. This systematic review aimed to analyze research articles where psychological interventions with elements of mindfulness (PIMs) were used to support physicians in order to reduce burnout and foster empathy and well-being. Methods: Systematic searches were conducted in May 2019, within six electronic databases PubMed, EBSCOhost MEDLINE, PsycArticles, Cochrane Library, JSTOR, and Slovenian national library information system. Different combinations of boolean operators were used-mindfulness, empathy, medicine/family medicine/general practice/primary care, burnout, doctors/physicians, intervention, and support group. Additional articles were manually searched from the reference list of the included articles. Studies with other healthcare professionals (not physicians and residents) and/or medical students, and those where PIMs were applied for educational or patient's treatment purposes were excluded. Results: Of 1194 studies identified, 786 screened and 139 assessed for eligibility, there were 18 studies included in this review. Regardless of a specific type of PIMs applied, results, in general, demonstrate a positive impact on empathy, well-being, and reduction in burnout in participating physicians. Compared with other recent systematic reviews, this is unique due to a broader selection of psychological interventions and emphasis on a sustained effect measurement. Conclusions: Given the pandemic of COVID-19, it is of utmost importance that this review includes also interventions based on modern information technologies (mobile apps) and can be used as an awareness-raising material for physicians providing information about feasible and easily accessible interventions for effective burnout prevention and/or reduction. Future research should upgrade self-reported data with objective psychological measures and address the question of which intervention offers more benefits to physicians.

Mapping Users' Experience of a Family History and Genetic Risk Algorithm Tool in Primary Care.

INTRODUCTION: The development of a family history (FH) questionnaire (FHQ) provides an insight into a patient's familiarity of a trait and helps to identify individuals at increased risk of disease. A critical aspect of developing a new tool is exploring users' experience. OBJECTIVE: The objective of this study was to examine users' experience, obstacles and challenges, and their views and concerns in the applicability of a new tool for determining genetic risk in Slovenia's primary care. METHODS: We used a qualitative approach. The participants completed a risk assessment software questionnaire that calculates users' likelihood of developing familial diseases. Audio-taped semi-structured telephone interviews were conducted to evaluate their experience. There were 21 participants, and analyses using the constant comparative method were employed. RESULTS: We identified 3 main themes: obstacles/key issues, suggestions for improvements, and coping. The participants were poorly satisfied with the clarity of instructions, technical usability problems, and issues with the entry of relatives' data. They expressed satisfaction with some of the characteristics of the FHQ (e.g., straightforward and friendly format, easy entry, and comprehension). They suggested simpler language, that the disease risk should be targeted toward the disease, that the FHQ should include patient-specific recommendations, and that it should be part of the electronic medical records. When discussing what would they do with the results of the FHQ, the participants used different coping strategies: active (e.g., seeking information) or passive (e.g., avoidance). DISCUSSION/CONCLUSION: User experience was shown to be a synthesis of obstacles, overcoming them with suggestions for improvements, and exploration of various coping mechanisms that may emerge from dealing with the stressor of "being at risk."

Effectiveness of the Use of Augmented Reality in Teaching the Management of Anaphylactic Shock at the Primary Care Level: Protocol for a Randomized Controlled Trial.

BACKGROUND: Augmented reality (AR) has benefits and feasibility in emergency medicine, especially in the clinical care of patients, in operating rooms and inpatient facilities, and in the education and training of emergency care providers, but current research on this topic is sparse. OBJECTIVE: The primary objective is to evaluate the short-term and long-term effectiveness of the use of AR in the treatment of patients with anaphylactic shock. The secondary objectives are to evaluate the safety in the treatment of patients with anaphylactic shock, evaluate the short-term and long-term effectiveness of stress management in this process, and determine the experiences and attitudes towards the use of AR in education. METHODS: The study will be conducted in 3 phases. In the first phase, we will develop and test the scenario for simulation of anaphylactic shock and the evaluation scale for assessing the effect of the intervention. In the second phase, a single-blinded, randomized controlled trial will be conducted. In the third phase, the use of AR in teaching the management of anaphylactic shock using focus groups will be evaluated qualitatively. All participants will participate in a 1-day training program consisting of a lecture on emergency care and anaphylactic shock as well as exercises in manual dexterity (aspiration, airway management, alternative airway management, artificial respiration, chest compressions, safe defibrillation, oxygen application, use of medication during emergency care). The test group will also focus on education about anaphylactic shock in AR (the intervention). The main outcome will be the evaluation of the participants' performance in coping with a simulated scenario of anaphylactic shock using a high-fidelity simulator (simulator with high levels of realism) and a standardized patient in an educational and clinical environment. The study will be conducted with primary care physicians. RESULTS: A scenario for the simulation with a high-fidelity simulator and standardized patient has already been developed. For the time being, we are developing an evaluation scale and starting to recruit participants. We plan to complete the recruitment of participants by the end of December 2020, start the randomized controlled trial in January 2021, and finish 1 year later. The first results are expected to be submitted for publication in 2021. CONCLUSIONS: This will be the first study to evaluate the effectiveness of the use of AR in medical teaching. Specifically, it will be based on a clinical case of anaphylactic shock at the primary care level. With our study, we also want to evaluate the translation of these educational results into clinical practice and assess their long-term impact. TRIAL REGISTRATION: ISRCTN Registry ISRCTN58047410; http://www.isrctn.com/ISRCTN58047410. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/22460.

Natriuretic peptides for heart failure screening in nursing homes: a systematic review.

The high burden of heart failure in nursing-home populations is due to advanced age and comorbidities. Heart failure is often undiagnosed or misdiagnosed in this population and therefore remains untreated. We review the use of natriuretic peptide biomarkers for screening heart failure in nursing-home residents. The study was performed in accordance with recommendations from the Cochrane Collaboration using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement (PRISMA) and is registered in PROSPERO Register of Systematic Reviews. Databases PubMed, Embase, and Trip were searched from 2000 to March 2019, supplemented by hand-searching of references. Studies investigating the nursing-home population were included. The prevalence of heart failure among nursing-home residents was higher than in the general population of comparable age (23% vs 10%, respectively). The rate of misdiagnosis in nursing homes ranged from 25 to 76%. NT-proBNP was the most commonly used natriuretic peptide biomarker for heart failure screening. The mean value of NT-proBNP was significantly higher in residents with heart failure than in residents overall (pooled means of 2409 pg/mL vs 1074 pg/mL, respectively). In comparison with current guidelines, the proposed cut-off values for ruling out heart failure were higher in the analyzed studies, with ranges of 230-760 pg/mL for NT-proBNP and 50-115 pg/mL for BNP. NT-proBNP and BNP are used for screening heart failure in the nursing-home population. The current screening cut-off values are probably too low for use in nursing homes. Our most conservative estimation for ruling out heart failure is an NT-proBNP cut-off value of 230 pg/mL.

Prevalence and clinical and psychological correlates of high fear of cancer recurrence in patients newly diagnosed with head and neck cancer.

BACKGROUND: Patients with head and neck cancer (HNC) are vulnerable to fear of cancer recurrence (FCR) and psychiatric morbidity. We investigated the prevalence of high FCR and demographic, clinical, psychological, and psychiatric factors associated with high FCR prior to the start of the treatment. METHODS: In a cross-sectional substudy of the large ongoing prospective NET-QUBIC study questionnaires and psychiatric interviews of 216 patients newly diagnosed with HNC were analyzed. RESULTS: High FCR was observed in 52.8% of patients and among those 21.1% also had a lifetime history of selected anxiety or major depressive disorder. FCR was not related to any clinical characteristics; however, younger age, higher anxiety symptoms, introversion, greater needs for support regarding sexuality, and being an exsmoker were significantly associated with higher FCR. CONCLUSION: Factors associated with high FCR provide us with a better conceptual understanding of FCR in patients newly diagnosed with HNC.

Prevalence and factors associated with unmet needs in post-treatment cancer survivors: A systematic review.

Cancer survivors may experience unmet needs beyond the end of their treatment. This paper aimed to explore the prevalence and most frequently found unmet needs and to identify factors associated with higher levels of total unmet needs and with each domain separately. Five databases were searched using the keywords neoplasms, survivors, needs assessment, health services' needs and demands. The results were presented based on the strength of the evidence (strong, moderate and weak association) and the categorisation of the pooled prevalence of at least one unmet need (high, moderate, low). Twenty-six studies were included in the review. A higher prevalence of at least one reported unmet need was observed in survivors with less time since treatment and in women with breast cancer. The most frequently reported unmet needs were fear of cancer recurrence and requesting up to date information. Strong evidence was found for an association between a higher number of unmet needs and younger age, higher anxiety and poorer quality of life. Future studies on unmet needs should report how unmet needs are associated with each domain separately. This might solve the inconclusive evidence found for the stage of the disease at diagnosis and depression.

"Not just another meta-analysis": Sources of heterogeneity in psychosocial treatment effect on cancer survival.

BACKGROUND: Currently, there are eight meta-analyses that address the question whether psychosocial intervention can prolong survival with widely disparate conclusions. One reason for inconsistent findings may be the methods by which previous meta-analyses were conducted. METHODS: Databases were searched to identify valid randomized controlled trials that compared psychosocial intervention with usual care. Hazard ratios (HRs) and their confidence intervals were pooled to estimate the strength of the treatment effect on survival time, and z-tests were performed to assess possible heterogeneity of effect sizes associated with different patient and treatment characteristics. RESULTS: Twelve trials involving 2439 cancer patients that met screening criteria were included. The overall effect favored the treatment group with a HR of 0.71 (95% Cl 0.58-0.88; P = 0.002). An effect size favoring treatment group was observed in studies sampling lower vs higher percentage of married patients' (NNT = 4.3 vs NNT = 15.4), when Cognitive-Behavioral Therapy was applied at early vs late cancer stage (NNT = 2.3 vs NNT = -28.6), and among patients' older vs younger than 50 (NNT = 4.2 vs NNT = -20.5). CONCLUSIONS: Psychosocial interventions may have an important effect on survival. Reviewed interventions appear to be more effective in unmarried patients, patients who are older, and those with an early cancer stage who attend CBT. Limitations of previous meta-analysis are discussed.

The 14-item Resilience scale as a potential screening tool for depression/anxiety and quality of life assessment: a systematic review of current research.

BACKGROUND: Due to the expensive and time-consuming diagnostics, most general physicians do not use a standardized psychodiagnostic tool to detect depression and anxiety and often rely on their own judgment. This often leads to inaccuracy of identification of patients with mental disorders. OBJECTIVE: To systematically review the literature of the 14-item resilience scale (RS-14) and offer directions for future studies. METHODS: Fourteen studies that included a translated/validated RS-14 regardless of the sample were included through Medline and CINAHL databases and the following questions were addressed: (i) What are the factor structure, internal consistency and repeatability of the RS-14? (ii) Is RS-14 concordant with other scales for measuring resilience, and what is the concurrent validity of this instrument? (iii) What are the critiques, conclusions and limitations of previous studies? RESULTS: Most factor analyses demonstrated a one-factor solution and confirmed 14-item scale. Cronbach's α for was high (M = 0.88); the test-retest reliability was satisfactory in three (0.70 < r > 0.83) out of four studies (r = 0.49). Results of concurrent validity showed positive correlation with some variables, including quality of life and a negative correlation with depression and anxiety. Among other limitations, the biggest drawback was a non-representative sample. CONCLUSIONS: RS-14 was found to perform well in clinical and non-clinical sample. Due to its wide use of population, time efficiency and good results on concurrent validity, we suggest future studies to examine whether RS-14 has a potential to serve as a first distress and quality of life screening tool in the family medicine practices.