The International Consortium for Health Outcomes Measurement developed the Pregnancy and Childbirth (PCB) outcome set to improve value-based perinatal care. This set contains clinician-reported outcomes and patient-reported outcomes. We validated the set for use in the Netherlands by exploring its applicability among all end-users prior to implementation. A mixed-methods design was applied. A survey was performed to assess patients (n = 142), professionals (n = 134) and administrators (n = 35) views on the PCB set. To further explore applicability, separate focus groups were held with representatives of each of these groups. The majority of survey participants agreed that the PCB set contains the most important outcomes. Patient-reported experience measures were considered relevant by the majority of participants. Perceived relevance of patient-reported outcome measures varied. Main themes from the focus groups were content of the set, data collection timing, implementation (also IT and transparency), and quality-based governance. This study supports suitability of the PCB outcome set for implementation, evaluation of quality of care and shared decision making in perinatal care. Implementation of the PCB set may change existing care pathways of perinatal care. Focus on transparency of outcomes is required in order to achieve quality-based governance with proper IT solutions.
Abstract Background Vulvar lichen sclerosus (VLS) is a chronic remitting condition that affects the genital skin of females of all ages. Although qualitative studies have been conducted that have focused on women with VLS in mid-life or beyond, less is known about the experiences of individuals with VLS from childhood or adolescence onward. Objectives To gain an understanding of the experiences of women with a history of juvenile VLS (JVLS) with regard to the impact of the disease on their personal lives, and their experiences and needs regarding care and guidance. Methods A qualitative study was conducted consisting of 27 in-depth face-to-face interviews with adult women with a histologically confirmed history of JVLS, striving for maximum variation and saturation. Interviews were audio recorded and transcribed verbatim. A thorough thematic content analysis was performed. Results Three main themes were identified. Theme 1 was named ‘Varying impact of living with JVLS’: women experienced diverse emotional and physical impacts, from shame and denial to complete acceptance, from restrictions in daily functioning to no limitations; they felt hindered by their own lack of knowledge about JVLS and generally expressed positivity in sharing their experiences with people close to them. Theme 2 was entitled ‘Finding one’s way in care and guidance’: while navigating care and guidance, women often felt hindered by knowledge gaps among healthcare professionals (HCPs), lack of continuity in care and guidance, lack of life phase-adjusted and future-oriented information provision, inadequate guidance around life events and insufficient monitoring of determinants of treatment adherence. Theme 3 was named ‘Need for patient-tailored care involving appropriate and compassionate care and guidance’: patients stressed the need for age-appropriate and life phase-adjusted information, guidance around life events and compassionate contact with knowledgeable HCPs aware of the determinants of treatment adherence and influencing factors. Conclusions Age-appropriate, life phase-adjusted, individually tailored care for women diagnosed with VLS in childhood or adolescence is needed. Care and guidance from childhood onward should encompass a standard of care adapted to the individual as their needs change over time. This involves taking interpersonal differences into account, including differences in support network and coping strategies. These findings demonstrate the need to improve awareness and knowledge about JVLS/VLS among HCPs, especially primary care providers, and among the general public.
Background Guidelines traditionally focus on the diagnosis and treatment of single diseases. As almost half of the patients with a chronic disease have more than one disease, the applicability of guidelines may be limited. The aim of this study was to assess the extent that guidelines address comorbidity and to assess the supporting evidence of recommendations related to comorbidity. Methodology/Principal Findings We conducted a systematic analysis of evidence-based guidelines focusing on four highly prevalent chronic conditions with a high impact on quality of life: chronic obstructive pulmonary disease, depressive disorder, diabetes mellitus type 2, and osteoarthritis. Data were abstracted from each guideline on the extent that comorbidity was addressed (general comments, specific recommendations), the type of comorbidity discussed (concordant, discordant), and the supporting evidence of the comorbidity-related recommendations (level of evidence, translation of evidence). Of the 20 guidelines, 17 (85%) addressed the issue of comorbidity and 14 (70%) provided specific recommendations on comorbidity. In general, the guidelines included few recommendations on patients with comorbidity (mean 3 recommendations per guideline, range 0 to 26). Of the 59 comorbidity-related recommendations provided, 46 (78%) addressed concordant comorbidities, 8 (14%) discordant comorbidities, and for 5 (8%) the type of comorbidity was not specified. The strength of the supporting evidence was moderate for 25% (15/59) and low for 37% (22/59) of the recommendations. In addition, for 73% (43/59) of the recommendations the evidence was not adequately translated into the guidelines. Conclusions/Significance Our study showed that the applicability of current evidence-based guidelines to patients with comorbid conditions is limited. Most guidelines do not provide explicit guidance on treatment of patients with comorbidity, particularly for discordant combinations. Guidelines should be more explicit about the applicability of their recommendations to patients with comorbidity. Future clinical trials should also include patients with the most prevalent combinations of chronic conditions.
日光性角化病 (AK) 是浅色皮肤的人因为长期暴露在阳光下而引起的粗糙的皮肤损伤(斑片)。AK 的患病率高,在大于 50 岁人群中影响24‐60% 人口。存在很多 AK 表示此人更容易发生皮肤癌。这项来自荷兰的研究旨在通过描述 AK 人群如何使用医疗保健服务,以及 GP 和皮肤科医生对于此病的管理,来提供 AK 管理(治疗)见解。作者们发现,相当比例的 AK 人群不知道自己患有 AK,因此也不知道皮肤癌风险增高。GP 水平的治疗似乎普遍与指南不符,31% 的患者在第一次 GP 预约时被直接转诊给皮肤科医生。这些转诊通常与 AK 的广泛程度(即患者有多少 AK)无关。由于这些可以被 GP 轻松治疗的患者,导致二级医疗(例如医院,人们在这里被转诊给皮肤科医生)的负担增高。在皮肤科医生那里,AK 患者的随访率高,意味着他们会返回进行后续预约。作者们总结说,这些发现表明医疗保健资源的利用效率不足。他们指出,为了克服这种现象,应探明 GP 和皮肤科医生在管理 AK 方面偏离当前指南的动机。
Objective To gain insight into the process of postpartum care utilisation and in-home support among vulnerable women. Design, method, participants and setting A qualitative interview study was conducted among 23 pregnant and postpartum vulnerable women in the Netherlands, following a grounded theory approach. Women were determined as vulnerable by their healthcare providers. Theoretical sampling of participants was applied and was alternated by data analysis to include information-rich cases until saturation was achieved. Results A conceptual framework of postpartum care utilisation was generated consisting of three phases: pregnancy, early postpartum period and late postpartum period. Within these phases, information provision, parenting self-efficacy and social network were identified as overarching themes. Perceived inadequate information on content of postpartum care posed a major barrier to forming realistic expectations during pregnancy and hindered its utilisation. Low self-efficacy facilitated postpartum care utilisation. All women experienced increased self-efficacy during and after postpartum care. Support from a social network influenced expectations regarding the added value of postpartum care during pregnancy, and lowered actual utilisation during the postpartum period. The costs of postpartum care and the role of the maternity care assistant acted as general barriers or facilitators influencing the three overarching themes and therefore postpartum care utilisation indirectly. Conclusions Our findings suggest that postpartum care utilisation among vulnerable women may be improved by considering the particular phase and relevant themes applying to individual women, and adapt care accordingly. We recommend to provide comprehensive, understandable information and to emphasise the gains of postpartum care in improving self-efficacy for vulnerable women. Moreover, involving a woman’s social network in postpartum care may add value to this care for this population.
Abstract Background Although medical specialists traditionally hold negative views towards working part-time, the practice of medicine has evolved. Given the trend towards more part-time work and that there is no evidence that it compromises the quality of care, attitudes towards part-time work may have changed as well in recent years. The aim of this paper was to examine the possible changes in attitudes towards part-time work among specialists in internal medicine between 1996 and 2004. Moreover, we wanted to determine whether these attitudes were associated with individual characteristics (age, gender, investments in work) and whether attitudes of specialists within a partnership showed more resemblance than specialists' attitudes from different partnerships. Methods Two samples were used in this study: data of a survey conducted in 1996 and in 2004. After selecting internal medicine specialists working in general hospitals in The Netherlands, the sample consisted of 219 specialists in 1996 and 363 specialists in 2004. They were sent a questionnaire, including topics on the attitudes towards part-time work. Results Internal medicine specialists' attitudes towards working part-time became slightly more positive between 1996 and 2004. Full-time working specialists in 2004 still expressed concerns regarding the investments of part-timers in overhead tasks, the flexibility of task division, efficiency, communication and continuity of care. In 1996 gender was the only predictor of the attitude, in 2004 being a full- or a part-timer, age and the time invested in work were associated with this attitude. Furthermore, specialists' attitudes were not found to cluster much within partnerships. Conclusion In spite of the increasing number of specialists working or preferring to work part-time, part-time practice among internal medicine specialists seems not to be fully accepted. The results indicate that the attitudes are no longer gender based, but are associated with age and work aspects such as the number of hours worked. Though there is little evidence to support them, negative ideas about the consequences of part-time work for the quality of care still exist. Policy should be aimed at removing the organisational difficulties related to part-time work and create a system in which part-time practice is fully integrated and accepted.
Abstract Background Large Language Models (LLMs) have a potential role in providing adequate patient information. Objectives To compare the quality of LLMs’ responses with established Dutch patient information resources (PIRs) in answering patient questions regarding melanoma. Methods Responses from ChatGPT versions 3.5 and 4.0, Gemini, and three leading Dutch melanoma PIRs to 50 melanoma-specific questions were examined at baseline and for LLMs again after eight months. Outcomes included (medical) accuracy, completeness, personalisation, readability, and additionally reproducibility for LLMs. Comparative analyses were performed within LLMs and PIRs using Friedman’s ANOVA, and between best-performing LLMs and gold-standard PIR using Wilcoxon Signed Ranks test. Results Within LLMs, ChatGPT-3.5 demonstrated the highest accuracy (p=0.009). Gemini performed best in completeness (p<0.001), personalisation (p=0.007), and readability (p<0.001). PIRs were consistent in accuracy and completeness, with the general practitioner’s website excelling in personalisation (p=0.013) and readability (p<0.001). The best-performing LLMs outperformed the gold-standard PIR on all criteria except accuracy. Over time, response reproducibility decreased for all LLMs, showing variability across outcomes. Conclusions Although LLMs show potential in providing highly personalised and complete responses to patient questions regarding melanoma, improving and safeguarding accuracy, reproducibility and accessibility is crucial before they can replace or complement conventional PIRs. This study compared the quality of responses from Large Language Models (LLMs) with established Dutch patient information resources (PIRs) for melanoma-related patient questions. Results showed LLMs provided highly personalised and complete answers, often surpassing PIRs. However, improving and safeguarding accuracy, reproducibility and accessibility is crucial before they can replace or complement conventional PIRs.
