The contribution of psychological disorders to the burden of skin disease has been poorly explored, and this is a large-scale study to ascertain the association between depression, anxiety, and suicidal ideation with various dermatological diagnoses. This international multicenter observational cross-sectional study was conducted in 13 European countries. In each dermatology clinic, 250 consecutive adult out-patients were recruited to complete a questionnaire, reporting socio-demographic information, negative life events, and suicidal ideation; depression and anxiety were assessed with the Hospital Anxiety and Depression Scale. A clinical examination was performed. A control group was recruited among hospital employees. There were 4,994 participants––3,635 patients and 1,359 controls. Clinical depression was present in 10.1% patients (controls 4.3%, odds ratio (OR) 2.40 (1.67–3.47)). Clinical anxiety was present in 17.2% (controls 11.1%, OR 2.18 (1.68–2.82)). Suicidal ideation was reported by 12.7% of all patients (controls 8.3%, OR 1.94 (1.33–2.82)). For individual diagnoses, only patients with psoriasis had significant association with suicidal ideation. The association with depression and anxiety was highest for patients with psoriasis, atopic dermatitis, hand eczema, and leg ulcers. These results identify a major additional burden of skin disease and have important clinical implications.

There is growing recognition that involving patients in the development of new patient-reported outcome measures helps ensure that the outcomes that matter most to people living with health conditions are captured. Here, we describe and discuss different experiences of integrating patients as full patient research partners (PRPs) in outcomes research from multiple perspectives (e.g., researcher, patient, and funder), drawing from three real-world examples. These diverse experiences highlight the strengths, challenges, and impact of partnering with patients to conceptualize, design, and conduct research and disseminate findings. On the basis of our experiences, we suggest basic guidelines for outcomes researchers on establishing research partnerships with patients, including: 1) establishing supportive organizational/institutional policies; 2) cultivating supportive attitudes of researchers and PRPs with recognition that partnerships evolve over time, are grounded in strong communication, and have shared goals; 3) adhering to principles of respect, trust, reciprocity, and co-learning; 4) addressing training needs of all team members to ensure communications and that PRPs are conversant in and familiar with the language and process of research; 5) identifying the resources and advanced planning required for successful patient engagement; and 6) recognizing the value of partnerships across all stages of research. The three experiences presented explore different approaches to partnering; demonstrate how this can fundamentally change the way research work is conceptualized, conducted, and disseminated; and can serve as exemplars for other forms of patient-centered outcomes research. Further work is needed to identify the skills, qualities, and approaches that best support effective patient-researcher partnerships.

This novel approach based on MCDA has the potential for being applied as a new tool for judging and deciding on the benefits and risks, thereby helping regulators and industry in the development and approval of new medicines and their adequate use.

Parkinson's disease (PD) is a chronic, neurodegenerative disease that places a substantial burden on patients, their families and carers, as well as on society as a whole. PD can severely affect the health-related quality of life (HR-QOL) of both patients and their carers and, as the disease progresses, HR-QOL deteriorates. This review aims to critically evaluate the literature on a number of important aspects that influence HR-QOL in relation to PD. Factors associated with a negative impact and ways to improve HR-QOL are highlighted, and tools for HR-QOL assessment reviewed. The economic impact of PD and related cost-effectiveness studies are also reviewed. Over the course of the disease, patients with PD experience changes in their HR-QOL that are affected by factors such as depression, motor complications, education and surgery. However, a lack of uniformity in the choice of HR-QOL tools used in studies makes comparison of results difficult. Research on motor fluctuations and dyskinesias has shown conflicting results, whereas it is clear from the available data that depression needs to be more clearly recognised and treated. Inequality in the numbers of men and women receiving surgery still needs to be addressed and, again, in this area there is a lack of uniformity with respect to assessment for surgery. Education programmes have been shown to be successful in improving HR-QOL, although more research is needed about how to introduce such programmes to all PD patients. In particular, there has been little detailed research into young-onset PD and juvenile patients to assess the true impact of the disease on their HR-QOL. The literature has also shown that PD can affect the HR-QOL of the carer, which may have a 'knock-on' effect for the patient. The HR-QOL of carers needs more attention because these individuals can significantly reduce the burden that would otherwise fall on the health services in terms of cost and care. Research shows that the economic costs of PD are high, particularly for patients in advanced stages of the disease and those with motor complications. Although carer burden is a major source of costs, this is not factored into cost-effectiveness analyses. Furthermore, because too few studies use quality-adjusted life years as their health outcome, particularly in studies of the costs of surgery, comparison of costs of treatments is difficult. The review highlights the need for HR-QOL tools such as the EuroQol-5D to be used together with disease-specific tools to provide the most comprehensive picture of the costs and impact of PD.A recent upsurge in published literature on PD resulting from increased interest in HR-QOL issues has led to an at times overwhelming amount of new information. The present review assembles the most important points relating to HR-QOL in PD raised in the literature, adds value to previously covered issues, and examines areas of HR-QOL in PD that have not previously been reviewed, such as education, carer burden and surgery, highlighting where more research is warranted.

When examining equivalence between paper and electronic versions of PROs, formats are usually judged by authors to be equivalent. Participants prefer electronic formats. This literature review gives encouragement to the further widespread development and use of ePROs.

Skin conditions may have a strong impact on patients' sexual life, and thus influence personal relationships. Sexual issues are difficult to discuss directly in clinical practice, and a mediated instrument may be useful to capture such information. In this study item 9 of the Dermatology Life Quality Index was used to collect information on sexual impact of several skin conditions in 13 European countries. Among 3,485 patients, 23.1% reported sexual problems. The impairment was particularly high in patients with hidradenitis suppurativa, prurigo, blistering disorders, psoriasis, urticaria, eczema, infections of the skin, or pruritus. Sexual impact was strongly associated with depression, anxiety, and suicidal ideation. It was generally more frequent in younger patients and was positively correlated with clinical severity and itch. It is important to address the issue of sexual well-being in the evaluation of patients with skin conditions, since it is often linked to anxiety, depression, and even suicidal ideation.

Most existing health-related quality of life research concerns the impact of disease on patients. However, in several medical specialties including dermatology, oncology, and physical and mental disability, studies have been carried out investigating the impact of disease on the lives of families of patients. The aim of this paper is to review the literature which relates to the impact of disease on family members of patients. The OVIDSP Medline was selected as the primary database, Searches were limited to sources published in English. 158 papers were identified for review. The definition of “family” varied across the literature, and a broad definition was accepted in this review. This review shows that a wide variety of aspects of family members’ lives can be affected, including emotional, financial, family relationships, education and work, leisure time, and social activities. Many of these themes are linked to one another, with themes including financial impact and social impact being linked to emotional impact. Some positive aspects were also identified from the literature, including family relationships growing stronger. Several instruments exist to measure the impact of illness on the family, and most are disease or specialty- specific. The impact of disease on families of patients is often unrecognised and underestimated. Taking into account the quality of life of families as well as patients can offer the clinician a unique insight into issues such as family relationships and the effect of treatment decisions on the patient's close social group of partner and family.

This study describes the first international exploration of PE in HRQL and PRO research. Discussions highlighted that, in the absence of good practice guidelines, a framework or toolkit of how to embed PE within HRQL and PRO research is required. Moreover, this framework should support the rigorous evaluation of PE impact. ISOQOL should be instrumental in taking these ideas forward, actively engaging with patient partners towards shaping a future ISOQOL PE strategy.