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Objective: To explore the effects of a cognitive-behavioral program addressing urinary incontinence on the quality of life of men who have undergone radical prostatectomy., Method: Randomized controlled clinical trial with patients undergoing radical prostatectomy in an institution for cancer treatment in Brazil. The 34 participants were randomized into two groups: 17 in the control group who received the institution's standard care and 17 in the intervention group who received the cognitive-behavioral program. Quality of life was assessed using the King's Health Questionnaire and the International Consultation on Incontinence Questionnaire-Short Form., Results: Participants from intervention group showed better results regarding the reduction of the impact of urinary incontinence on quality of life (p ≤ 0.001), with emphasis on limitations in daily activities, general health perception, physical and social limitations, emotions, and sleep and mood., Conclusion: The cognitive-behavioral program was effective in reducing the impact of urinary incontinence on quality of life. This study contributes to clinical practice by providing an effective, low-cost, and easily applicable therapy. Brazilian Registry of Clinical Trials: RBR-3sstqg.

Background: Several patient-reported outcome measures (PROMs) have been developed for research to assess the multiple dimensions of chronic pruritus (CP). The acceptability and perceived benefits of their use in clinical practice remain unknown., Objectives: To assess the acceptability and perceived benefits of validated PROMs from the perspective of patients and physicians in dermatological offices and clinics., Methods: Patients with CP due to atopic dermatitis, psoriasis, chronic prurigo or chronic urticaria were recruited at 10 dermatological offices and two dermatological clinics in Germany. Patients completed a set of validated PROMs on pruritus intensity (numerical rating scale, NRS), symptom control (itch-controlled days, ItchCD), quality of life (Dermatology Life Quality Index, DLQI; 5-pruritus life quality, 5PLQ) and general health status (EuroQol, EQ-VAS). Acceptability (relevance, difficulty of completion, length) and benefits (usefulness, feasibility) of these tools were assessed on a NRS (0-10) by patients and physicians, respectively. Data were analysed descriptively. Linear regression was used to study potential associations between age, sex, occupation, office versus clinic, change of therapy and physician-reported benefits., Results: N = 523 patients (46% male, average age: 53.5 years) participated. Acceptability of PROMs by patients was high, indicated by low difficulty (Md = 0, IQR = 0-1 for all PROMs) and high relevance (Md = 8, IQR = 4-10 for all PROMs). Also, most patients (89-95%) rated length of the questionnaires as 'exactly right'. Physicians rated the NRS as the most beneficial instrument (feasibility: Md = 8, IQR = 6-10; usefulness: Md = 9, IQR = 7-10). Hierarchical linear regression revealed that only recruitment site (dermatological office vs. clinic) was significantly associated with usefulness and feasibility (higher ratings for clinical context; βs = 0.149-0.258, ps <0.05; except feasibility for EQ5d, β = ns)., Conclusions: PROMs are welcomed by patients, while physicians consider instruments measuring pruritus intensity and impairment of quality of life as beneficial for the clinical routine. Widespread implementation of PROMs in daily clinical work is needed to improve care., (© 2024 European Academy of Dermatology and Venereology.)

Objectives: This study aimed to evaluate the variables that  were associated, contributed and moderated quality of life (QoL) and burden in family caregivers., Methods: A total of 130 participants were evaluated using the following instruments: Depression, Anxiety and Distress Scale; Index of Family Relations; Heartland Forgiveness Scale; Burden Interview Scale; Short Form Health Survey., Results: Being a younger caregiver, less distress, better family relationships and greater use of forgiveness were associated with more QoL. Also, family caregivers who chosethe caregiving role, less distress, better family relationships and greater use of forgiveness showed lower levels of burden. Age, distress and forgiveness contributed to QoL. In turn, the choice to become a family caregiver, distress, and forgiveness contributed to burden. Forgiveness played a moderating role in the relationship between family relationships and burden., Conclusion: Based on the results, there is a need to intervene in older family caregivers, particularly those who did not choose to become a caregiver, who report greater distress, have worse family relationships, and display less use of forgiveness, in order to decrease their burden and promote QoL.

Background: Frailty among older adults undergoing hemodialysis is increasingly prevalent, significantly impacting cognitive function, mobility, and social engagement. This study focuses on the clinical profiles of very older adults in hemodialysis, particularly examining the interplay of dependency and frailty, and their influence on dialysis regimens., Methods: In this observational, descriptive study, 107 patients aged over 75 from four outpatient centers and one hospital unit were examined over a year. Patient data encompassed sociodemographic factors, dialysis specifics, analytical outcomes, lifestyle elements, and self-reported post-treatment fatigue. Malnutrition-inflammation scale was used to measure the Nutritional status; MIS scale for malnutrition-inflammation, Barthel index for dependency, Charlson comorbidity index; FRIED scale for frailty and the SF12 quality of life measure., Results: The study unveiled that a substantial number of older adults on hemodialysis faced malnutrition (55%), dependency (21%), frailty (46%), and diminished quality of life (57%). Patients with dependency were distinctively marked by higher comorbidity, severe malnutrition, enhanced frailty, nursing home residency, dependency on ambulance transportation, and significantly limited mobility, with 77% unable to walk. Notably, 56% of participants experienced considerable post-dialysis fatigue, correlating with higher comorbidity, increased dependency, and poorer quality of life. Despite varying clinical conditions, dialysis patterns were consistent across the patient cohort., Conclusions: The older adult cohort, averaging over four years on hemodialysis, exhibited high rates of comorbidity, frailty, and dependency, necessitating substantial support in transport and living arrangements. A third of these patients lacked residual urine output, yet their dialysis regimen mirrored those with preserved output. The study underscores the imperative for tailored therapeutic strategies to mitigate dependency, preserve residual renal function, and alleviate post-dialysis fatigue, ultimately enhancing the physical quality of life for these patients., (© 2024. The Author(s).)

Introduction: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables., Methods: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used., Results: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers' ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers' depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers' psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable., Conclusion: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants' needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes.

Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches. Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis. Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., 'communication') may even improve after initial decline. 'Closeness' was consistently altered over time, from carers' perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that 'mixed feelings' (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services' assistance, seemed to facilitate positive (re)appraisals of the relationship. Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Importance: Chronic prurigo (CPG), including prurigo nodularis, is a difficult disease to treat and considerably affects patients' quality of life. Helping patients obtain control of CPG is a major treatment goal., Objective: To develop and validate the Prurigo Control Test (PCT), a tool for assessing disease control in CPG, and to identify a cutoff value for controlled disease to aid treatment decisions., Design, Setting, and Participants: This qualitative study followed the current recommendations for patient-reported outcome measure development in the generation and validation of the PCT. The final PCT was obtained after item generation, followed by reduction and selection, and was then tested for internal consistency and test-retest reliability, convergent validity, known-group validity, screening accuracy, and banding. The item-generation phase resulted in an unselected list of 69 potential PCT items. Impact analysis, interitem correlation, and review for content (face) validity resulted in final set of 5 PCT items. The validation study was performed among patients across 2 expert centers in Germany. Data were analyzed from February 2017 to November 2019., Main Outcomes and Measures: A 5-item PCT with a recall period of 2 weeks was developed. A cutoff value of 10 points or higher was determined as suitable for identifying patients with well-controlled vs poorly controlled CPG., Results: Of the 95 patients included in the validation study, the median (range) age was 63 (19-87) years, 50 patients (53%) were women, and the median (range) disease duration was 72 (9-774) months. The validation study yielded good internal consistency reliability (Cronbach α, 0.86) and a high degree of convergent validity. The PCT demonstrated good known-group validity and could discriminate between patients who differed in prurigo control. Test-retest reliability was high, and the intraclass correlation coefficient was 0.94, indicating excellent reproducibility., Conclusions and Relevance: This qualitative study showed that the PCT is able to assess disease control in patients with CPG. Its retrospective approach, brevity, and simple scoring likely make the PCT suitable for clinical practice and trials.

Background: Vascular cognitive impairment is frequent, in mild (mVCI) or severe forms (vascular dementia)., Objective: To do a randomized controlled-trial to evaluate the impact of physical activity on cognition (primary outcome), neurocognitive measures, quality of life, functional status, and physical function (secondary outcomes), in patients with mVCI., Methods: A hundred and four patients with mVCI (mean age 71.2 years; 53 women) were randomized for a six-month intervention of moderate physical activity (60-minute sessions, 3 times/week) (n = 53) or best-practice "usual care" (n = 51). Comprehensive evaluations of primary and secondary outcomes included an objective measure of physical activity through accelerometry at baseline and after intervention., Results: Mean session attendance was 58%. Adverse events were negligible. After 6 months, no significant primary outcome change was observed, either in the intervention or 'usual care' group. The intervention group improved significantly in some secondary outcomes in physical function - aerobic capacity (U = 403; p = 0.000) and agility (U = 453; p = 0.005) after 6 months. Regardless of randomization arm, a post-hoc analysis based on fulfilling at least 21.5 minutes/day of moderate or 10.7 minutes/day of vigorous physical activity (World Health Organization-WHO standards) revealed improvements. These were not only in motor capacity but also on the global measure of cognition, executive functions and memory., Conclusions: Physical activity was safe and beneficial regarding domains of physical function. No significant cognitive decline was registered over 6-months, regardless of intervention allocation. Larger samples, longer follow-ups and focus on intervention adherence are needed to fully analyze the impact of WHO recommendations for physical activity in mVCI populations.

Menopause may negatively impact Quality of Life (QoL). Our study used a cross-sectional design and research participants were 99 women in natural menopause. In our study, we analyzed the relationship between age at menopause onset, hormone therapy use, duration of couple relationship, menopause duration, psychological morbidity, marital satisfaction, menopause representations, and QoL following the Wilson and Cleary Health-Related QoL conceptual model. The authors found that negative representations, lower marital satisfaction, psychological morbidity, and shorter duration of menopause contributed to lower QoL. Moreover, the authors found that psychological morbidity and menopause representations (identity and control/cure dimensions) had an indirect effect between marital satisfaction and vasomotor, psychosocial, and sexual QoL. Also, we found that age at the onset of menopause showed a moderating effect in the final model. Future studies should replicate these results in a longitudinal design and analyze how the variables that showed a moderating role and indirect effects will function as moderators and mediators, respectively, over time.

Background: Back pain negatively impacts a person's quality of life and can cause major disability or even death. The measurement of spinal stiffness can be utilized as a promising tool to guide therapeutic decisions regarding physical therapy that result in effective back pain management. This study aimed to determine the reliability of instrumented postero-anterior (PA) stiffness assessment of the lumbar spine in asymptomatic participants by novice assessors using a portable algometer and the Kinovea program., Methods: Thirty asymptomatic participants aged 18-25 years were enrolled in this study. Two novice assessors examined the participants for lumbar spinal stiffness at L1-L5 for two consecutive days. The algometer was applied to measure the PA force that applied to each lumbar. The stiffness assessment of each lumbar region was recorded as a video. The 600 data sets of assessment videos were imported into the Kinovea program to perform displacement measurements of each lumbar level. Spinal displacement values at 15 N were defined by graph plotting between force and displacement. The spinal stiffness values were defined by slope calculation. Both variables were analyzed for inter-rater and test-retest reliabilities using intra-class correlation coefficients (ICCs) and standard error of measurement (SEM). Bland-Altman analysis was applied to assess the inter-rater and test-retest systematical bias and limits of agreement of measuring displacement and stiffness., Results: The inter-rater reliability of measuring the displacement and the stiffness of L1-L5 was moderate to good (displacement ICCs: 0.67-0.83, stiffness ICCs: 0.60-0.83). The test-retest reliability of measuring the displacement and stiffness of L1-L5 were moderate to good, ICCs: 0.57-0.86 and ICCs: 0.51-0.88, respectively. The inter-rater analysis's Bland-Altman plot showed that the systematic bias was 0.83 when measuring displacement and 0.20 when measuring stiffness and the bias of both parameters were in both directions. While the test-retest systematically biased measurements of displacement and stiffness were -0.26 mm and 0.22 N/mm, respectively, and the bias of both parameters were in both directions., Conclusions: The moderate-to-good inter-rater and test-retest reliabilities of the portable instrumented spinal stiffness assessment using a digital algometer and the Kinovea program by novice assessors were demonstrated in this study. Bland-Altman analysis showed that measuring stiffness was more stable and had less systematic bias than measuring displacement. To figure out how reliable the device is in general, more comprehensive studies should be comparatively conducted in the future on subgroups of patients with normal vertebra, hypomobile or hypermobile conditions., Competing Interests: The authors declare there are no competing interests., (©2023 Yodchaisarn et al.)

Background: Patients with asthma often consider their symptomatology a barrier to exercise, leading to a reduced physical activity level. This study aims to determine whether the effect of a Nordic walking (NW) training program plus education and usual care is superior to educational and usual care only, in terms of exercise tolerance and other health-related outcomes in patients with asthma. The second aim is to explore the patients' experience with the NW program., Methods: A randomized controlled trial will be conducted with 114 adults with asthma recruited in sanitary area of A Coruña, Spain. Participants will be randomized to NW or control groups in blocks of six and in the same proportion in each group. Participants in the NW group will enrol in supervised sessions during eight weeks, three times/week. All participants will receive three educational sessions on asthma self-management plus usual care (S1 Appendix). Outcomes such as exercise tolerance (primary outcome), physical activity level, asthma-related symptoms and asthma control, dyspnea, lung function, handgrip strength, health related quality of life, quality of sleep, treatment adherence and healthcare resources use will be measured pre and postintervention, and at three and six months of follow-up. Participants in the NW group will additionally participate in focus groups., Discussion: This is the first study analysing the effect of NW in patients with asthma. NW combined with education and usual care is expected to improve exercise tolerance, but also asthma-related outcomes. If this hypothesis is confirmed, a new community-based therapeutic approach will be available for patients with asthma., Trial Registration: Study registered in ClinicalTrials.gov with number of register NCT05482620., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2023 Vilanova-Pereira et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

For most individuals, changes occurring during the aging process may cause dissatisfaction and concerns regarding body image, with implications on quality of life (QoL). The aim of this study was to assess the contribution of sociodemographic and psychological variables and the type of anti-aging products/treatments on men's QoL, as well as to evaluate the moderating role of aging perceptions in the relationship between psychological morbidity and QoL. This study used a cross-sectional design and included a sample of 111 male participants who used anti-aging cosmetic products/aesthetic treatments. Participants were assessed on body image, self-esteem, psychological morbidity, aging perceptions, traits of perfectionism, and QoL. Results suggested that psychological morbidity and perceptions of the aging process as chronic negatively contributed to QoL, and emotional representations of aging moderated the relationship between psychological morbidity and QoL. According to the findings, psychological intervention programs to improve QoL should focus on men with higher levels of psychological morbidity and more negative emotional responses to the aging process., (© 2022 Institute of Psychology, Chinese Academy of Sciences and John Wiley & Sons Australia, Ltd.)

Background: Ageing is accompanied by physical changes, both at the physiological and appearance levels. The way people perceive these changes have important consequences on general health and quality of life (QoL). This study analysed the relationship between sociodemographic variables, psychological variables, use of antiageing cosmetic products/aesthetic treatments, and QoL., Methods: This cross-sectional study included a sample of 271 women, aged between 25 and 70 years, users of antiageing cosmetic products and/or aesthetic services. Participants were assessed on psychological morbidity (Hospital Anxiety and Depression Scale), appearance schemes (Appearance Schemas Inventory - Revised), self-esteem (Rosenberg Self-Esteem Scale), perfectionism (Frost Multidimensional Perfectionism Scale), self-perceptions of ageing (Brief Aging Perceptions Questionnaire), and QoL (SF-12v2)., Results: Being older and having a higher household income was associated with better QoL. The use of facial firming products, hair colouring products, and sunscreen was also associated with better QoL. Psychological morbidity and perfectionism contributed negatively to QoL, while household income contributed positively. Ageing perceptions moderated the relationship between self-esteem and QoL., Conclusion: According to the findings, intervention programs to reduce psychological morbidity, increase self-esteem, promote more adaptive patterns of perfectionism, and recognize the role of age perception are needed to improve women's QoL. The perceived influence of the usage of cosmetic products to prevent/minimize aging signs should be further explored., (© 2022 Society of Cosmetic Scientists and Societe Francaise de Cosmetologie.)

Background: Quality of life (QoL) is severely affected by breast cancer (BC) and its treatment, particularly chemotherapy treatment. Psychological morbidity, illness perceptions, and self-efficacy for coping are important variables that impact QoL during the treatment of BC. The impact of cortisol on QoL has been poorly studied., Objective: The aim of this study was to identify the contributing variables to QoL in women with BC receiving adjuvant chemotherapy, as well as the moderating role of cortisol in the relationship between treatment adverse effects and QoL., Methods: This cross-sectional study included 112 women with BC undergoing chemotherapy who answered the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire, the Supplementary Questionnaire Breast Cancer Module, the Illness Perception Questionnaire, the Cancer Behavior Inventory-Brief Version, and the Hospital Anxiety and Depression Scale. In addition, salivary cortisol concentrations were also assessed., Results: The strongest contributor to lower QoL was treatment adverse effects. The illness perception and the cancer stage also contributed to a lower QoL. Nadir cortisol moderated the relationship between adverse effects and QoL., Conclusion: Breast cancer chemotherapy and illness perceptions, even at the beginning of treatment, showed a great impact on QoL., Implications for Practice: It is important during chemotherapy to assess women's illness perceptions, as well as their stress levels to help women cope with the stress associated with treatment adverse effects. Monitoring cortisol is important as cortisol moderated the relationship between adverse effects and QoL. For those women struggling with stress, a reference to a mental health provider is warranted., Competing Interests: The authors have no funding or conflicts of interest to disclose., (Copyright © 2022 Wolters Kluwer Health, Inc. All rights reserved.)

Objectives: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change., Methods: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM)., Results: RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers' RQ, whereas social support was associated with more positive RQ trajectories., Conclusion: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.

Body appreciation, a central aspect of positive body image, recently started to capture the attention of the scientific community as a potential determinant of well-being. However, little is known about onset and early identification in both males and females, as studies on this subject in childhood are still scarce, due in part to a dearth of validated instruments. Therefore, the main purpose of this study is to examine the psychometric properties and sex invariance of a Portuguese version of the Body Appreciation Scale-2 for Children (BAS-2C; Halliwell et al., 2017). We also explored the relationship between the BAS-2C and body mass index z-scores (BMIz). Participants were 328 children, ages 9-to-11 years (50.9% girls). Confirmatory factor analysis indicated that the one-dimensional factor structure had adequate fit, but sex invariance was not supported. Differential item functioning analysis revealed that boys and girls respond differently to item #9, which assesses body comfort. BAS-2C scores evidenced internal consistency and convergent validity with quality of life, healthy eating habits, and body size dissatisfaction. BMIz showed a low ability to predict body appreciation. This study brings support for the use of the BAS-2C in Portuguese-speaking children, but caution is warranted in comparing BAS-2C scores across sexes., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Background: Type 2 diabetes Mellitus is a chronic disease, and one of its complications may result in amputation. The goal of this study was to evaluate the impact of psychosocial variables, over time, on quality of life (QoL) of caregivers of patients (N = 110) who had undergone a recent amputation., Method: A longitudinal design was employed: (T1) 1 month after the patient's surgery; (T2) 7 months after; and (T3) 10 months after. Burden Assessment Scale, Family Assessment Device, Revised Impact of Events Scale, Family Disruption from Illness Scale, and Short Form Health Survey were used. A path analysis model was tested., Results: Burden, perception of family functioning, and traumatic symptoms at T1 showed a positive impact on the perception of family functioning, at T2. Traumatic symptoms, at T1, predicted traumatic symptoms at T2 being also a mediator between those symptoms (T1) and physical QoL (T3). Physical and traumatic symptoms, at T1 predicted physical symptoms, at T2 affecting both mental and physical QoL (T3), being also a mediator in these relationships. Burden (T1) also had a direct effect on mental QoL (T3) and at T2 had an impact on physical QoL (T3) mediating also the relationship between burden/physical symptoms at T1 and physical QoL, at T3., Conclusion: Intervention should focus on physical and traumatic symptoms as well as burden since they were both mediators regarding mental and physical QoL., (© 2021. International Society of Behavioral Medicine.)

Background: Portugal has a Dementia Strategy that endorses care coordination in the community, but the strategy is not implemented despite there being a network of multidisciplinary primary care clinics that could support it. Recent research into barriers to dementia management in primary care has focused essentially on general practitioners' (GPs) factors and perspectives. A comprehensive triangulated view on the barriers to dementia management emphasising teamwork is missing., Aim: To explore the barriers to the implementation of the Portuguese Dementia Strategy by primary care teams, from the perspectives of service users and professionals., Methods: Purposive sampling was used to recruit 10 GPs, 8 practice nurses, 4 social workers, 8 people with dementia and 10 family carers from 6 practices in different social contexts within the Lisbon metropolitan area. The analytical framework combined codes derived from the transcripts with codes from the available literature. Themes focused on the access to professionals/community services, care coordination within healthcare teams, and between health and community services., Findings: Several system barriers were identified (undefined roles/coordination within teams, time constraints, insufficient signposting to community services) along with individual barriers (limited competence in dementia, unrecognised autonomy, limited views on social health and quality of life (QoL)), hindering users access to dementia services., Conclusion: Enhanced competence in dementia, and nurse-led systematic care of people with dementia and their carers, are necessary. They can be effective in improving the QoL in dementia, but only if associated with better community support.

Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services., Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion., Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access . Coordination and flexibility in setting and type of services were among the Recommendations to enhance use . Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly ., Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.

Self-efficacy is a coping resource with a positive impact on well-being, quality of life, anxiety, and depression in cancer patients, even after treatment. This study focused on the validation of the Cancer Behavior Inventory-Brief Version (CBI-B) in Portuguese patients with breast cancer. The study included 115 patients with breast cancer receiving outpatient chemotherapy in four hospitals located in Portugal. Participants (N = 115) completed the translated version of the CBI-B in Portuguese and measures of quality of life (QLQ- C30), psychological distress (HADS), and illness perceptions (IPQ-B). Confirmatory factor analysis supported the four-factor original structure of the CBI-B. The Portuguese version of the CBI-B showed good psychometric properties as shown by measures of internal consistency (Cronbach's alpha = .88), test-retest reliability (intraclass correlation coefficient = .59), convergent validity with the QLQ-C30 (r = .43, p < .001), and divergent validity with the HADS (r = -.60, p < .001) and the IPQ-B (r = -.51, p < .001). The Portuguese version of the CBI-B is a valid and reliable instrument to evaluate the self-efficacy for coping in Portuguese breast cancer patients. Future studies should validate the CBI-B in patients with other types of cancer., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Aim and objective : This study aimed to identify the variables that contributed to Quality of Life (QoL) of Alzheimer's Disease (AD) caregivers, taking into consideration the caregiving context, stressors, role strains, and resources. Methods : The sample included 102 caregivers of AD patients who answered the following instruments: Depression, Anxiety and Stress Scale-21; Satisfaction with Social Support Scale; Revised Memory and Behavioral Problems Checklist; Family Communication and Satisfaction Scales; Spiritual and Religious Attitudes in Dealing with Illness; and Quality of Life in Alzheimer's Disease - Caregiver Version. Results : Caregivers who were employed, chose the caregiving role, and received help in caring showed better QoL. Also, being younger, less caregiving daily hours, caring for patients with less memory and behavior problems, lower distress, and family satisfaction predicted better QoL. Finally, spirituality was a moderator between family communication and QoL but not between family satisfaction and QoL. Conclusion : Caregiving-context variables (age, professional status, choosing to care, receiving help in the caregiving role and duration of daily care); role strains (family dissatisfaction); stressors (caregivers' distress and patients' memory and behavioral problems); and resources (spirituality) had an impact on caregivers' QoL emphasizing the adequacy of the Stress Process Model. Intervention should also focus on spirituality given its moderating role.

Background: Chronic pruritus (CP) is a subjective symptom, and it is necessary to assess its intensity with validated patient-reported outcome tools in order to allow determination of the treatment course., Objectives: So far, the itch intensity scales were validated in small cohorts and in single languages. Here, we report the validation of the numerical rating scale, the verbal rating scale and the visual analogue scale for the worst and average pruritus intensity in the last 24h in several languages across Europe and across different pruritic dermatoses., Methods: After professional translation, the intensity scales were digitized for use as a tablet computer application. Validation was performed in clinics for Dermatology in Austria, France, Germany, Italy, Poland, Russia, Spain, Switzerland and Turkey., Results: A total of 547 patients with contact dermatitis, chronic nodular prurigo, psoriasis vulgaris, lichen planus or cutaneous T-cell lymphoma were included. The intensity scales showed a high level of reproducibility and inter-correlations with each other. The correlation with the Dermatology Life Quality Index was weak to strong in nearly all countries and dermatoses with the exception of France and patients with chronic nodular prurigo, for which no statistically significant correlations were found., Conclusions: The numerical rating scale, the verbal rating scale und the visual analogue scales are valid instruments with good reproducibility and internal consistency in German (Germany, Austria, Switzerland), French, Italian, Polish, Russian, Spanish and Turkish for different pruritic dermatoses. VAS worst was the best reproducible and consistent measuring instrument in all countries., (© 2021 The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.)

Background: The capability concept became a recognized approach to the measurement of quality of life. The ICECAP-O for older people aims to measure capabilities and has recently been used in people with dementia (self-rating) and informal carers (substituted judgement). However, linguistic validation studies have so far been lacking., Methods: A cross-sectional cognitive interview study with 15 people with dementia (PwD) and 23 informal carers (ICs) was conducted in Germany and Portugal. Respondents were asked to reveal their understanding of the ICECAP-O and the capability approach as well as the response process. A summarising content analysis was performed., Results: Despite the small sample, our linguistic validation of the German and Portuguese translations detected considerable difficulties or deviations in item comprehension when compared with the intended meaning. In some cases, the item interpretations did not reflect the entire scope of the associated capability dimension, though they were basically correct. Moreover, participants were not able to differentiate some items appropriately from one another, and some misinterpretations occurred. ICs relied mainly on observable behaviour, emotions, or verbal expressions of the PwD. Therefore, ICs found items that ask about the achievement of individual expectations or thoughts about the future difficult to assess. Only very few PwD clearly indicated that they understood the capability approach. ICs in Germany had more difficulties in understanding the capability concept than in ICs Portugal., Discussion: This linguistic validation study in Germany and Portugal indicates a need for some rephrasing and refinements of the ICECAP-O translated items in both countries to fully encompass some dimensions and avoid misinterpretations. Further studies with larger samples are necessary. Based on our findings, the current German version for ICs' substituted judgement cannot be recommended for this kind of respondents without further advancements., (Copyright © 2021. Published by Elsevier GmbH.)

Background: Patients with bone metastases often are unable to complete quality of life (QoL) questionnaires, and cohabitants (such as spouses, domestic partners, offspring older than 18 years, or other people who live with the patient) could be a reliable alternative. However, the extent of reliability in this complicated patient population remains undefined, and the influence of the cohabitant's condition on their assessment of the patient's QoL is unknown., Questions/purposes: (1) Do QoL scores, measured by the 5-level EuroQol-5D (EQ-5D-5L) version and the Patient-reported Outcomes Measurement Information System (PROMIS) version 1.0 in three domains (anxiety, pain interference, and depression), reported by patients differ markedly from scores as assessed by their cohabitants? (2) Do cohabitants' PROMIS-Depression scores correlate with differences in measured QoL results?, Methods: This cross-sectional study included patients and cohabitants older than 18 years of age. Patients included those with presence of histologically confirmed bone metastases (including lymphoma and multiple myeloma), and cohabitants must have been present at the clinic visit. Patients were eligible for inclusion in the study regardless of comorbidities, prognosis, prior surgery, or current treatment. Between June 1, 2016 and March 1, 2017 and between October 1, 2017 and February 26, 2018, all 96 eligible patients were approached, of whom 49% (47) met the selection criteria and were willing to participate. The included 47 patient-cohabitant pairs independently completed the EQ-5D-5L and the eight-item PROMIS for three domains (anxiety, pain, and depression) with respect to the patients' symptoms. The cohabitants also completed the four-item PROMIS-Depression survey with respect to their own symptoms., Results: There were no clinically important differences between the scores of patients and their cohabitants for all questionnaires, and the agreement between patient and cohabitant scores was moderate to strong (Spearman correlation coefficients ranging from 0.52 to 0.72 on the four questionnaires; all p values < 0.05). However, despite the good agreement in QoL scores, an increased cohabitant's depression score was correlated with an overestimation of the patient's symptom burden for the anxiety and depression domains (weak Spearman correlation coefficient of 0.33 [95% confidence interval 0.08 to 0.58]; p = 0.01 and moderate Spearman correlation coefficient of 0.52 [95% CI 0.29 to 0.74]; p < 0.01, respectively)., Conclusion: The present findings support that cohabitants might be reliable raters of the QoL of patients with bone metastases. However, if a patient's cohabitant has depression, the cohabitant may overestimate a patient's symptoms in emotional domains such as anxiety and depression, warranting further research that includes cohabitants with and without depression to elucidate the effect of depression on the level of agreement. For now, clinicians may want to reconsider using the cohabitant's judgement if depression is suspected., Clinical Relevance: These findings suggest that a cohabitant's impressions of a patient's quality of life are, in most instances, accurate; this is potentially helpful in situations where the patient cannot weigh in. Future studies should employ longitudinal designs to see how or whether our findings change over time and with disease progression, and how specific interventions-like different chemotherapeutic regimens or surgery-may factor in., Competing Interests: Each author certifies that neither he nor she, nor any member of his or her immediate family, has funding or commercial associations (consultancies, stock ownership, equity interest, patent/licensing arrangements, etc.) that might pose a conflict of interest in connection with the submitted article. All ICMJE Conflict of Interest Forms for authors and Clinical Orthopaedics and Related Research® editors and board members are on file with the publication and can be viewed on request., (Copyright © 2020 by the Association of Bone and Joint Surgeons.)

Chronic pain is a health problem that significantly influences patients' lives, causing functional, social, socioeconomic, and emotional changes that impact quality of life (QoL). The aim of this study was to evaluate which variables (e.g., psychological morbidity, illness representations, pain, and coping) contribute to QoL and to analyse the moderating role of illness- and wellness-focused coping in the relationship between pain interference and Qol, in chronic pain patients. A sociodemographic and clinical questionnaire, the Brief Illness Perception Questionnaire, the Pain Catastrophizing Scale, the Hospital Anxiety and Depression Scale, the Chronic Pain Coping Inventory, the Short Form Health Survey, and the Brief Pain Inventory were completed by 103 patients with chronic pain. Greater use of wellness-focused coping and being professionally active were associated with better physical QoL. Cognitive representations and illness-focused coping contributed to physical QoL, and psychological morbidity contributed to mental QoL. Illness-focused coping and wellness-focused coping moderated the relationship between pain interference and physical QoL, but not with mental QoL. Since pain interference was positively related to psychological morbidity, and the latter was negatively related to QoL, it is extremely important to evaluate and promote patients' coping strategies that are focused on well-being to improve QoL. Results from this study underline the relevance of a multidisciplinary approach to chronic pain and the need to account for psychological morbidity and coping strategies in intervention programs to promote QoL in chronic pain patients., (© 2020 Institute of Psychology, Chinese Academy of Sciences and John Wiley & Sons Australia, Ltd.)

Purpose: The Quality of Life Alzheimer's Disease Scale (QoL-AD) is commonly used to assess disease specific health-related quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available., Methods: Different statistical models to estimate utility directly, or responses to individual EQ-5D questions (response mapping) from QoL-AD, were trialled for patient-rated and proxy-rated questionnaires. Model performance was assessed by root mean square error and mean absolute error., Results: The response model using multinomial regression including age and sex, performed best in both the estimation dataset and an independent dataset., Conclusions: The recommended mapping algorithm allows researchers for the first time to estimate EQ-5D values from QoL-AD data, enabling cost-utility analyses using datasets where the QoL-AD but no utility measures were collected.

Purpose: Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia., Methods: Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman's correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries., Results: The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect., Conclusion: This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

Objective: Breast cancer is an important public health problem that is increasing in incidence, being a stressor with a negative impact on women's quality of life. This study is focused on the evaluation of temporal precursors (one month before) of women's quality of life undergoing chemotherapy, considering post-surgical personal, clinical, cognitive and neuropsychophysiological factors, according to the Transactional Stress and Coping Model., Methods: This longitudinal study included 112 patients with breast cancer. Data were collected in two different moments: before and during the adjuvant chemotherapy. Structural equation modelling was used to support a theoretically based model in which some antecedent factors impact patients' long-term quality of life through a set of mediators., Results: The associations of breast symptoms, body image and sexual functioning with psychological distress and quality of life were totally mediated by illness perceptions, while the associations of working memory with psychological distress and quality of life were totally mediated by self-efficacy for coping. Patients with greater psychological distress showed higher levels of nadir cortisol., Conclusions: Results showed the importance of assessing patients' perceptions of their illness, prior to chemotherapy, as well as promoting more self-efficacy for coping, in order to improve women's emotional state and quality of life., (© 2020 John Wiley & Sons Ltd.)

Background: The Nottingham Health Profile (NHP) is a generic measure of perceived distress that has been used widely as an outcome measure in clinical practice and trials. The availability of two Brazilian datasets provided the opportunity to assess the psychometric performance of the NHP in different populations - adult growth hormone deficiency (GHD) and pulmonary hypertension (PH). The purpose of the study was to see how valuable the NHP could be in assessing outcomes in diseases where no disease-specific measures are available. Methods: Secondary analyses were performed with NHP data. Patients diagnosed with adult GHD or PH were administered the NHP during clinic visits on two occasions, two weeks apart. A disease-specific measure of quality of life (QoL) was also administered to the relevant sample of patients on each occasion. Results: The psychometric properties of the NHP were good for both disease groups. As expected, both samples reported high scores on energy level, the PH sample scored high on physical functioning and the GHD sample on emotional reactions. For both samples, most of the NHP sections were able to distinguish between groups of respondents with different ratings of perceived general health. While most sections of the NHP were relatively highly correlated with the QoL measures, pain and sleep did not seem to be important predictors of QoL in either of the samples. Conclusions: The use of the NHP in adult GHD and PH populations in Brazil is not recommended as there are high-quality disease-specific measures available for each disease. However, where no disease-specific measures are available, the NHP can provide good descriptive information of the impact of disease on different patient populations., Competing Interests: Competing interests: AH and SPM are employees of Galen Research Ltd., which is the copyright holder of the NHP, QoL-AGHDA and CAMPHOR. ARO Jr is an employee of Ipsen Bioscience in Cambridge/MA, US., (Copyright: © 2020 Heaney A et al.)

Patients with systemic lupus erythematosus (SLE) experience chronic symptoms that negatively impact their quality of life (QoL). This study analyzed the variables that contributed to QoL in patients with SLE, including the mediating role of psychological morbidity and disease activity. This study used a transversal design and included 104 women with SLE. Participants answered several instruments assessing fatigue, psychological morbidity (depression and anxiety), body image, disease activity, and quality of life. The results showed that disease activity, fatigue severity, psychological morbidity and body image were associated with all domains of QoL. Additionally, psychological morbidity and disease activity mediated the relationship between body image and psychological morbidity. Also, disease activity mediated the relationship between body image and fatigue severity. According to the results, intervention in patients with SLE should focus on patients' psychological morbidity, particularly in the active phase of the disease. Body image, fatigue severity and psychological morbidity should be monitored in patients with SLE in order to promote QoL.

Purpose: The diagnosis of multiple myeloma (MM) has a significant impact on patients. This study analyzed the mediating role of patients' unmet needs in the relationship between psychological morbidity/social support and quality of life (QoL)., Methods: This study included 213 patients with MM recruited from the outpatient medical oncology and clinical hematology services from five hospitals. Patients who meet the study criteria were referred by physicians and invited to participate in the study by the researcher. All participants answered the following questionnaires: Hospital Anxiety and Depression Scale, Satisfaction with Social Support Scale, Short-Form Survivor Unmet Needs Survey, and The European Organization for Research and Treatment of Cancer's Multiple Myeloma Module. Descriptive statistics, bivariate correlations, and structural equation modeling were performed to analyze the data., Results: The indirect effect of psychological morbidity on patients' future perspectives (MYFP) was partially mediated by information unmet needs (INF), while the indirect effect of psychological morbidity on treatment side effects (MYSE) was partially mediated by relationship and emotional unmet needs (REH). In turn, the indirect effect of psychological morbidity on disease symptoms (MYDS) was fully mediated by REH. Social support had an indirect effect on MYDS and MYSE fully mediated by REH., Conclusion: Intervention programs tailored to promote MM patients' QoL should specifically address information and emotional needs, raising awareness and training health professionals, caregivers, and family members to attend  MM patients' unmet needs.

This cross-sectional study analysed the contributors and moderators of quality of life. The sample comprised 124 Portuguese multiple myeloma patients assessed on social support, spirituality, unmet needs, psychological morbidity and quality-of-life measures. Results showed that being older and a woman, as well as psychological morbidity and unmet emotional needs were significant predictors of worse quality of life as measured by the QLQ-C30. Unmet financial needs moderated the relationship between psychological morbidity and quality of life. Results emphasize the importance of intervening in patients' unmet emotional needs and psychological morbidity in order to promote quality of life, in this population.

Aim: This study assessed the effects of sociodemographic and psychological variables on quality of life (QOL), as well as the moderator role of family variables and coping strategies in the relationship between psychological morbidity and QOL, based on patients' perspective., Methods: This study used a cross-sectional design. A total of 158 patients with early Alzheimer's disease completed the Mini-Mental State Examination, the Montreal Cognitive Assessment, the Hospital Anxiety and Depression Scale, the Ways of Coping Questionnaire, the Spiritual and Religious Attitudes in Dealing with Illness, the Family Adaptability and Cohesion Evaluation Scales, the Family Satisfaction Scale, the Family Communication Scale, the Barthel Index, and the Quality of Life in Alzheimer's Disease Scale., Results: Being a man, having a higher education, and engaging in more exercise activity were associated with better QOL. Lower levels of cognitive impairment, psychological morbidity, and spirituality predicted better QOL. Also, lower levels of functionality, family communication, family satisfaction, and family functioning contributed to worse QOL. Gender, psychological morbidity, and functionality contributed significantly to QOL. Family satisfaction, family communication, and coping strategies moderated the relationship between psychological morbidity and QOL., Conclusion: Intervention in early-stage Alzheimer's disease should focus on patients' coping strategies and family context, particularly family satisfaction and communication, to foster QOL., (© 2020 Japanese Psychogeriatric Society.)

Objectives This study aimed to assess the relationship between sociodemographic, clinical, and psychological variables with quality of life (QoL) and the moderating role of caregivers' age and caregiving duration in caregivers of patients with Multiple Myeloma. : This study aimed to assess the relationship between sociodemographic, clinical, and psychological variables with quality of life (QoL) and the moderating role of caregivers' age and caregiving duration in caregivers of patients with Multiple Myeloma. Method : The sample included 118 caregivers who completed questionnaires that assessed psychological morbidity, satisfaction with social support, coping, burden, unmet needs, and QoL. Results : High psychological morbidity, burden and information, financial and emotional unmet needs were associated with lower QoL, while higher satisfaction with social support and more effective use of coping strategies were associated with better QoL. Women caregivers reported more satisfaction with social support and those who did not choose to care reported greater financial unmet needs and more use of coping strategies. The relationship between caregivers' psychological morbidity/social support and QoL was mediated by emotional needs and double mediated by coping and burden. The caregivers' age moderated the relationship between psychological morbidity/social support and emotional needs. Conclusion: Interventions to support the caregiver's emotional needs to promote their QoL are needed. These should be particularly tailored for older caregivers reporting greater psychological morbidity and younger caregivers less satisfied with their social support, as they have a negative indirect impact on their QoL.

This study evaluates the contribution of sociodemographic, clinical, and psychological variables to quality of life (QoL) of women with cervical cancer in the follow-up phase. This cross-sectional study, conducted at the Portuguese Oncology Institute of Lisbon, included 200 women with cervical cancer during follow-up. Patients were assessed on QoL (EORTC QLQ-C30), body image and specific symptoms (EORTC QLQ-CX24), psychological morbidity (HADS), social support (SSSS), emotional expression (CECS), and spirituality (SpREUK). Education and social support contributed positively to QoL, whereas body image and symptoms contributed negatively. Body image played a moderating role in the relationship between depression and QoL, but not between anxiety and QoL. Spirituality and emotional expression did not moderate the relationship between anxiety/depression and QoL. Health professionals should reference and monitor women with cervical cancer, providing support at the diagnosis and follow-up phase since physical and psychological symptoms, resulting from the disease, remain after the end of treatment and contribute negatively to their QoL. Interventions should focus on these particular outcomes to promote patients' QoL.

Background: Small-fibre neuropathy (SFN) is a known cause for pain, however, it may be also associated with chronic itch. The clinical profile of chronic itch due to SFN is poorly defined and accordingly under-diagnosed in clinical care., Objectives: To establish the clinical profile of patients with SFN and to propose diagnostic criteria for this patient population., Methods: Clinical data from patients diagnosed with SFN [chronic generalized itch and reduced intraepidermal nerve fibre density (IENFD)] were analysed retrospectively., Results: A total of 142 patients (60 females, median age: 62.5 years) were included. Patients reported daily, moderate to severe itch intensity scores occurring mostly in attacks (62.5%). Only 11 patients experienced exclusively itch, while the remaining patients (92%) reported pruralgia (itch along with painful sensations). Burning (50%), a sensation like needle pricks (46%) and tingling (45%) were the sensory symptoms reported by most patients. Cold or ice application led to an alleviation of the symptoms. The IENFD did not correlate with itch intensity; however, patients with a severely reduced IENFD (<30% of the normative cut-off value) reported more frequently sharp, spiky and drilling sensations compared to the remaining patients. The quality of life was moderately impaired and correlated with itch intensity, whereas anxiety and depression scores were low., Conclusions: Onset of pruralgia on normal appearing skin, occurrence in attacks and symptomatic alleviation with cold/ice application should alert physicians for a possible neuropathic SFN-related origin of itch. A reduced IENFD can confirm the diagnosis of SFN., (© 2019 The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.)

Background: This study evaluates the adequacy of the Revised Self and Family Management Framework (Grey et al., Nurs Outlook 63:162-170, 2015) in Portuguese adolescents with type 1 diabetes and analyzes the effect of parental coping, family support, and adherence in the association between illness representations, school support, metabolic control, quality of life, and family functioning., Method: One hundred adolescents (aged 12-19) and their parents participated in a cross-sectional study. Adolescents were assessed on school support, adherence to self-care, family support, and quality of life. Parents were assessed on parental coping and family functioning. Both adolescents and parents were assessed on illness representations. Adolescent's metabolic control was evaluated through glycosylate hemoglobin., Results: Adolescents' and parents' illness representations were associated with metabolic control, quality of life and family functioning. Parental coping, family support and adherence had an indirect effect between illness representations and diabetes outcomes., Conclusion: Findings showed the adequacy of Grey and colleagues' model (Nurs Outlook 63:162-170, 2015) in adolescents with type 1 diabetes and how family support, parental coping, and adherence contribute to diabetes management. Interventions to improve adolescents' and family's management of Type 1 diabetes should be designed to change adolescents' and family's representations and enhance their ability and skills in diabetes management.

The success of antiretroviral therapy (ART) has led to both extended life expectancy and improved quality of life among people living with HIV (PLWH). To maximize the efficacy of first line ART regimens in low- and middle-income countries (LMIC), we need culturally-relevant interventions that empower participants to reduce barriers to long-term uninterrupted adherence. The Chetana adherence intervention trial was designed in collaboration with local community groups as a comprehensive wellness program for adherence-challenged PLWH and included peer-led adherence support, yoga, nutrition, information about local resources, and individual counseling using motivational interviewing techniques. Intervention arm participants were almost twice as likely to be virally suppressed at their 12-month follow-up visit (AOR = 1.98; 95% CI [1.2, 3.23]) as were participants in the active control arm. They were also about twice as likely as control arm participants to self-report ≥ 95% adherence (AOR = 1.86, 95% CI [1.09, 3.15]), and as having eliminated individual adherence barriers (AOR = 2.33, 95% CI [1.51, 3.62]) and clinic attendance barriers (AOR = 2.01, 95% CI [1.20, 3.38]) These low-cost strategies can be implemented by local NGOs, making it both scalable and sustainable in this and similar settings.

Background: Studies suggest that people with a diagnosis of schizophrenia are one of the most stigmatized groups in society., Aim: To comprehensively analyze personal stigma in patients diagnosed with schizophrenia., Method: Data were obtained from 89 patients. Patients were evaluated with the following scales: a sociodemographic and clinical questionnaire, the Discrimination and Stigma Scale, the Self-perception of Stigma Questionnaire for People with Schizophrenia, the Positive and Negative Syndrome Scale, the Calgary Depression Scale for Schizophrenia, the Global Assessment of Functioning Scale, and the Brief Social Functioning Scale., Results: Relations between personal stigma and sociodemographic and psychosocial variables were poor. However, clinical variables correlated with different facets of personal stigma. Personal stigma subscales&#180; correlations were between experienced stigma, anticipated stigma, and self-stigma to each other. 29.5% of the experienced stigma subscale variance was explained by age of onset and level of depression. 20.1% of the anticipated stigma subscale variance was explained by level of depression and gender. 27.3% of the overcoming stigma subscale variance was explained by level of depression and positive and negative psychotic symptoms. 35.8% of the self-stigma scale variance was explained by the level of depression., Conclusions: Addressing stigma within treatment seems of crucial importance since all stigma facets seem to be highly related to clinical dimensions, especially depression Therefore, including strategies to reduce stigma in care programs may help patients with schizophrenia to better adjust in life and improve their illness process.

Objective: Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view., Method: This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support., Result: The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90)., Significance of Results: The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.

This study analyzed the impact of dissimilarities in illness perceptions between parents and adolescents, school support, and family functioning on quality of life of adolescents with type 1 diabetes (T1D). A total of 100 adolescents diagnosed with T1D for at least 1 year and a primary caregiver participated in the study (N=200). Adolescents answered the Diabetes Quality of Life and the School Support Questionnaire, and parents answered the general functioning subscale of the Family Assessment Device. Both answered the Brief-Illness Perception Questionnaire, regarding the adolescents' diabetes. The interception effect of dissimilarities regarding identity and concerns perceptions toward diabetes, between parents and adolescents, and school support in the relationship between family functioning and quality of life was significant and explained 27% and 32% of the variance, respectively. The results showed a negative relationship between family functioning and quality of life when school support was low and dissimilarities in identity and concerns perceptions were high. Therefore, to increase quality of life of adolescents with T1D, intervention programs should include family, teachers, school staff, and peers to improve their knowledge of diabetes and support to adolescents.

Objective : Lower limb amputation (LLA) leads to several emotional and physical sequelaes that have a negative impact on individuals` life. The objectives of this study were: 1) to analyze the relationship between emotional reactions (anxiety, depression and traumatic stress symptoms) and functionality level, before and after a LLA due to diabetic foot ulcer, and mental/physical quality of life; and 2) to analyze the mediator role of social support between emotional reactions and mental/physical quality of life. Method : A multicenter, longitudinal study with four time assessments: before the surgery, one month, six months, and ten months after surgery, including 206 individuals hospitalized with diabetic foot ulcer indicated for a LLA. The instruments used were the following: Revised Impact of Event Scale; Barthel Index; Hospital Anxiety and Depression Scale and SF-36. Results : Anxiety symptoms before surgery and depression symptoms one month after surgery contribute to Mental Component Score (MCS) ten months after surgery. The level of functionality before and one month after surgery, traumatic stress symptoms one month after surgery as well as satisfaction with social support six months after surgery contribute to the Physical Component Score (PCS), ten months after surgery. Social support was a mediator between traumatic stress symptoms one month after surgery and PCS ten months after surgery. Conclusion : Identifying risk variables and the extent to which and when they affect mental/physical quality of life, will help to develop appropriate psychological interventions to promote quality of life in this population.

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised.

Chronic pain is a cause of morbidity, interference with daily functioning, decreased health and quality of life. Purpose in life acts as a protective factor and mitigates these consequences. This cross-sectional study aimed to determine whether purpose in life contributed to psychological morbidity and quality of life in patients with chronic pain by controlling psychological variables related to health (pain severity and interference, pain perceptions, pain catastrophizing and coping). The sample included 103 patients diagnosed with chronic pain. Results showed that purpose in life independently contributed to psychological morbidity and to mental quality of life, but not to physical quality of life, after controlling for pain-related variables. Results showed the relevance of purpose in life to identify patients at risk of developing psychological morbidity and decreased quality of life, suggestting the need to intervene in chronic pain, specifically on purpose in life, to prevent psychological morbidity and promote quality of life, in this population.

Objectives: To identify correlates of self-rated and proxy-rated quality of life (QoL) in people with dementia on (i) a dementia-specific and (ii) a capability-wellbeing QoL measure at baseline and 12-month follow-up, and to consider such factors in the context of QoL intervention development. Method: Prospective clinical and demographic data were collected from 451 community-dwelling dyads (mild-moderate dementia) across eight European countries. QoL was measured using the QOL-AD and the ICECAP-O. Multivariate modelling identified correlates of self- and proxy-rated QoL at baseline and at 12-month follow-up. Results: Carer's proxy-ratings of QoL were significantly lower than self-ratings at all time-points for both measures. Proxy-ratings declined over time, but self-ratings remained stable. Baseline predictors of greater self-rated QoL were education, and greater functional ability and relationship quality. Greater proxy-rated QoL was associated with education and greater functional ability, relationship quality, carer social support and carer QoL, lower carer anxiety/depression and less severe neuropsychiatric symptoms in people with dementia. At follow-up, greater self-rated QoL was predicted by greater functional ability, relationship quality, carer social support and having a spousal carer. Greater proxy-rated QoL at follow-up was associated with the same factors as at baseline; however, the dyad living together was an additional predictive factor. Conclusion: Both proxy-ratings and self-ratings of QoL should be interpreted with caution and in the context of each individual caregiving relationship. Different functional, psychosocial, relational and contextual factors influence self- and proxy-ratings, and both sets of factors should be considered in the context of QoL intervention development for the dyad.

Purpose: The pressure on healthcare budgets remains high, partially due to the ageing population. Economic evaluation can be a helpful tool to inform resource allocation in publicly financed systems. Such evaluations frequently use health-related outcome measures. However, in areas such as care of older people, improving health outcomes is not necessarily the main focus of care interventions and broader outcome measures, including outcomes for those providing informal care, may be preferred when evaluating such interventions. This paper validates a recently introduced well-being measure, the ICECAP-O, in a population of informal carers for people with dementia from eight European countries., Methods: Convergent and discriminant validity tests were performed to validate the ICECAP-O using data obtained in a sample of 451 respondents from Germany, Ireland, Italy, the Netherlands, Norway, Portugal, Sweden and the UK. These respondents completed a number of standardized questionnaires within the framework of the Actifcare project., Results: The ICECAP-O performed well among informal carers, in terms of both convergent and discriminant validity. In the multivariate analysis, it was found to be significantly associated with the age of the person with dementia, EQ-5D-5L health problem index of the person with dementia, carer-patient relationship, care recipient CDR, carer LSNS Score, the PAI score, and Perseverance Time., Conclusion: The ICECAP-O appears to be a valid measure of well-being in informal carers for people with dementia. The ICECAP-O may therefore be useful as an outcome measure in economic evaluations of interventions aimed at such informal carers, when these aim to improve well-being beyond health.

Objective: The aim of this study is to present a broader perspective of factors affecting the quality of life after postmastectomy breast reconstruction in women with breast cancer by considering these patients' self-reported outcomes., Methods: The search was performed from 29 March to 19 April 2019, on the following databases: PsycInfo; Web of Science Core Collection, Current Contents Connect, Derwent Innovations Index, KCI-Korean Journal Database, Russian Science Citation Index, SciELO Citation Index, and MEDLINE. The studies were included if they identified factors affecting self-reported quality of life after breast reconstruction, in women with breast cancer., Results: One hundred and twenty-two records were identified. After quality assessment, 44 studies were included for qualitative synthesis. This review comprised a total of 16 683 women who underwent breast reconstruction. The results identified a broad collection of 32 empirically based variables associated with several domains of quality of life. These variables were grouped into four categories: (a) surgical, (b) clinical, (c) psychosocial, and (d) sociodemographic variables., Conclusions: This systematic review goes beyond surgical factors of morbidity and uses patient-reported outcomes to scope wider issues that influence quality of life, such as psychosocial and sociodemographic variables. It sustains the need to adopt a more holistic approach and advises the consideration of preoperative psychosocial factors to better understand these patients' quality of life after breast reconstruction and to implement future preventive measures., (© 2019 John Wiley & Sons, Ltd.)

Background: Multiple Sclerosis (MS) is a chronic disease that affects patients' quality of life and requires long term demanding care., Objective: The purpose of this study was to examine the relationships between patients and caregivers' variables regarding patients' quality of life, the moderating role of marital satisfaction between patients' psychological morbidity and quality of life, and the contribution of patient and caregiver variables towards patients' quality of life., Methods: The sample included 100 patients with MS and 72 caregivers. Participants' variables were assessed using self-report measures. The design of this quantitative study was transversal., Results: Marital satisfaction moderated the relationship between patients' anxiety and mental quality of life. Patients' perception of illness identity and consequences together with caregivers' depressive symptoms were mediators between patients' depression and quality of life. Burden also played a mediator role in the relationship between patients' depressive symptoms, disability level, and physical quality of life., Conclusion: Therefore, intervention in multiple sclerosis should be delivered in a dyadic context., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objective: The aim of this study was the validation of the European Organization for Research and Treatment of Cancer's Multiple Myeloma Module (QLQ-MY20) in Portuguese myeloma patients., Methods: A total of 213 Portuguese patients diagnosed with multiple myeloma participated in this study and were assessed with the European Organization for Research and Treatment of Cancer's (EORTC) Questionnaire C30 (QLQ-C30), the EORTC Multiple Myeloma Module (QLQ-MY20), the Hospital Anxiety and Depression Scale (HADS) and the Satisfaction with Social Support Scale (SSSS)., Results: The validated version includes 17 items presenting good global adjustment and good internal consistency. Overall, the Portuguese validation maintains the original model with the exception of three items that were excluded. The instrument also showed good reliability and good convergent and divergent validity., Conclusion: The Portuguese version of the EORTC Multiple Myeloma Module questionnaire seems to be a valid instrument for myeloma patients to help monitor interventions in this population focused on the promotion of quality of life., (© 2019 John Wiley & Sons Ltd.)

Purpose: This study assessed how psychological, socio-demographic and clinical variables were associated and moderated the relationship between sexual dissatisfaction and the psychosocial impact of the human papillomavirus (HPV) on the quality of life (QOL) of infected women. Methods: A cross-sectional design was used with a sample of 194 women. Participants completed a sociodemographic and clinical questionnaire, and were assessed on the psychosocial impact of HPV on quality of life (HPV Impact Profile), sexual dissatisfaction (Index of Sexual Satisfaction), psychological morbidity (Hospital Anxiety and Depression Scale), emotional suppression (Courtauld Emotional Control Scale) and spirituality (Spiritual and Religious Attitudes in Dealing with Illness). Results: Women with greater psychological morbidity and emotional suppression showed greater psychosocial impact of HPV on QOL. Greater psychological morbidity and emotional suppression, being older, having less education and not using condoms were associated with greater sexual dissatisfaction. Sexual dissatisfaction, psychological morbidity and age were associated with the impact of HPV on QOL. The variables that contributed to sexual dissatisfaction were age, emotional suppression and condom use. The use of condoms moderated the relationship between emotional suppression and sexual dissatisfaction. Conclusion: Interventions should focus on psychological morbidity and condom use, particularly in older and less educated women.