From decision to reflection: understanding the experiences and unmet care needs of patients treated with immunotherapy for melanoma in the adjuvant or metastatic setting.

BACKGROUND: Despite increased use of immune checkpoint inhibitors (ICIs) in patients with advanced melanoma, little is known about patient experiences during this treatment. This study aimed to gain an in-depth understanding of experiences and unmet care needs of patients treated in the adjuvant or metastatic setting for advanced melanoma regarding their ICI treatment trajectory. METHODS: Interviews and focus groups were conducted among 35 patients treated with ICIs in the adjuvant setting for completely resected stage III (n = 14), or in the metastatic setting for irresectable stage IV (n = 21) melanoma. A thorough thematic content analysis was conducted. RESULTS: Three main themes were identified. When (1) dealing with uncertainty in the decision-making process, adjuvant patients explored the pros and cons, whereas metastatic patients considered immunotherapy their only viable option. Both groups expressed the need for additional guidance. In (2) navigating the immunotherapy course, both perceived the trajectory as intense, experienced a major impact on their and their (close) relatives' lives, and felt the need to (re)gain control. When (3) looking back on the immunotherapy experience, metastatic patients generally felt relieved, while among adjuvant patients, feelings of doubt regarding their choice for ICIs were also reported. CONCLUSIONS: ICI treatment is perceived as intensive for both patient groups, facing both comparable and distinct challenges throughout the treatment trajectory, underscoring the need for stage-specific, individualised guidance. Options regarding flexible follow-ups, low-threshold contact and psychosocial support throughout the treatment trajectory should be explored.

Growing up with juvenile vulvar lichen sclerosus, the experiences and care needs of adult women with lichen sclerosus since childhood: a qualitative exploration.

BACKGROUND: Vulvar Lichen Sclerosus (VLS) is a chronic remitting condition affecting the genital skin of females of all ages. Although qualitative studies have been conducted focusing on women with VLS in mid-life or older, less is known about the experiences of individuals with VLS from childhood or adolescence onward. OBJECTIVE: To gain understanding of the experiences of women with a history of juvenile VLS (JVLS) regarding 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-taped and transcribed verbatim. A thorough thematic content analysis was performed. RESULTS: Three main themes were identified. I. Varying impact of living with JVLS: Women experienced diverse emotional and physical impact, 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 a positive influence of sharing their experiences with people close to them. II. Finding one's way in care and guidance: While navigating care and guidance, women often felt hindered by knowledge gaps among health care professionals (HCPs), lack of continuity in care and guidance, lack of life-stage adjusted and future-oriented information provision, inadequate guidance around life events, and insufficient monitoring of determinants of therapy adherence. III. Need for patient-tailored care: 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 therapy 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 needs change over time. This involves taking interpersonal differences into account, including differences in support network and coping strategies. These findings demonstrate the need for improving awareness and knowledge about (J)VLS among HCPs, especially primary care providers, and among the general public.

Oncological healthcare providers' perspectives on appropriate melanoma survivorship care: a qualitative focus group study.

BACKGROUND: The increasing group of melanoma survivors reports multiple unmet needs regarding survivorship care (SSC). To optimise melanoma SSC, it is crucial to take into account the perspectives of oncological healthcare providers (HCPs) in addition to those of patients. The aim of this study is to gain an in-depth understanding of HCPs' perspectives on appropriate melanoma SSC. METHODS: Four online focus groups were conducted with mixed samples of oncological HCPs (dermatologists, surgeons, oncologists, oncological nurse practitioners, support counsellors and general practitioners) (total n = 23). A topic guide was used to structure the discussions, focusing on perspectives on both SSC and survivorship care plans (SCPs). All focus groups were recorded, transcribed verbatim, and subjected to an elaborate thematic content analysis. RESULTS: Regarding SSC, HCPs considered the current offer minimal and stressed the need for broader personalised SSC from diagnosis onwards. Although hardly anyone was familiar with SCPs, they perceived various potential benefits of SCPs, such as an increase in the patients' self-management and providing HCPs with an up-to-date overview of the patient's situation. Perceived preconditions for successful implementation included adequate personalisation, integration in the electronic health record and ensuring adequate funding to activate and provide timely updates. CONCLUSIONS: According to HCPs there is considerable room for improvement in terms of melanoma SSC. SCPs can assist in offering personalised and broader i.e., including psychosocial SSC. Aside from personalisation, efforts should be focused on SCPs' integration in clinical practice, and their long-term maintenance.

Experiences of resuming life after immunotherapy and associated survivorship care needs: a qualitative study among patients with metastatic melanoma.

BACKGROUND: Immune checkpoint inhibitors (ICIs) have significantly improved the overall survival of patients with metastatic melanoma. It is unclear how the growing group of metastatic melanoma survivors resume their lives after treatment, and which needs they have regarding survivorship care (SSC). OBJECTIVES: To gain an in-depth understanding of metastatic melanoma survivors' experiences of resuming life after ICIs and their associated SSC needs. METHODS: A qualitative study was conducted among 20 patients with metastatic melanoma in whom ICIs had been discontinued after ongoing tumour response. One focus group (n = 9) was held, which was complemented by 11 individual interviews. Purposive sampling was used to select a variable sample in terms of sex, age, time since discontinuation of ICIs, and perceived impact of the disease. A topic guide was used to structure the (group) interviews, which were transcribed verbatim and analysed in a thematic content analysis, using several phases of coding. RESULTS: In resuming life after ICIs, the prognosis switch often caused mixed feelings among patients, mainly because of the uncertainty about the future. Demands and expectations from self and others, persistent complaints and new problems in different life domains often make it challenging to proceed with life as it was prior to metastatic cancer. Patients indicated they needed to find a new balance, which included learning to cope with uncertainty and a changed perspective on life and close relationships. In terms of SSC needs, patients particularly stressed the need for more tailored patient information, available at one location. In addition, they emphasized the need to know who to turn to in case of questions and indicated the need for psychosocial support, also for their close relatives. CONCLUSIONS: Metastatic melanoma survivors face various challenges in resuming life after ICIs and are left with several unmet SSC needs. Efforts should be focused on offering psychosocial supportive care in addition to medical care, from diagnosis onwards, taking into account the patient's close relatives. A single point of contact and personalized survivorship care plan (SCP) could be of added value in guiding them through the patient journey, which is, given its multidisciplinary nature, particularly important in melanoma care. What is already known about this topic? Since the introduction of immune checkpoint inhibitors (ICIs) the overall survival of patients with metastatic melanoma has improved significantly, leading to a growing group of melanoma survivors. Melanoma survivors may face various problems and challenges in resuming life after treatment, which may be associated with unmet survivorship care (SSC) needs. An in-depth understanding of their experiences with resuming life and the associated SSC needs is currently lacking. What does this study add? Metastatic melanoma survivors experience various challenges after immunotherapy, from the uncertain prognosis switch to the struggle of finding a new balance in life. Besides negative aspects, such as complaints in different life domains, the patient journey is often accompanied by positive outcomes, for example a changed perspective on life. They stress the need for tailored patient information and broader supportive care, also for their close relatives. What are the clinical implications of this work? In addition to medical care, efforts should be focused on offering psychosocial supportive care, including return-to-work issues, from diagnosis onwards, ideally taking into account the patient's close relatives. To guide them through the patient journey, a single point of contact and a personalized survivorship care plan (SCP) could be of added value. The latter is particularly important in melanoma care, given its multidisciplinary nature.

Barriers and Facilitators for Return to Work from the Perspective of Workers with Common Mental Disorders with Short, Medium and Long-Term Sickness Absence: A Longitudinal Qualitative Study.

Purpose Although common mental disorders (CMDs) highly impact individuals and society, a knowledge gap exists on how sickness absence can be prevented in workers with CMDs. This study explores: (1) workers' perceived causes of sickness absence; (2) perceived return to work (RTW) barriers and facilitators; and (3) differences between workers with short, medium and long-term sickness absence. Methods A longitudinal qualitative study was conducted involving 34 workers with CMDs. Semi-structured interviews were held at two time-points during their RTW process. The 68 interviews were audio-taped, transcribed and thematically analyzed to explore workers' perspective on sickness absence causes, RTW barriers and facilitators, and compare data across the three sub-groups of workers. Results Workers reported various causes for their absence, including: (1) high work pressure; (2) poor work relationships; (3) unhelpful thoughts and feelings, e.g. lacking self-insight; and (4) ineffective coping behaviors. According to workers, RTW was facilitated by work adjustments, fulfilling relationships with supervisors, and adequate occupational health guidance. Workers with short-term leave more often reported favorable work conditions, and proactive coping behavior. In contrast, the long-term group reported reactive coping behavior and dissatisfaction with their work. Conclusion Supporting workers with CMDs in gaining self-awareness and regaining control, discussing the value of their work, and creating work conditions that enable workers to do valuable work, seem central for successful RTW and might prevent sickness absence. Supervisors play a key role in enabling workers to do valuable work and further research should focus on how supervisors can be supported in this task.

Addressing sickness absence among adolescents and young adults: an evaluation of the Medical Advice for Sick-reported Students intervention.

BACKGROUND: Sickness absence is associated with lower school achievements and early school leaving. The Medical Advice for Sick-reported Students (MASS) intervention is a proactive school-based intervention focused primarily on early identification and reduction of sickness absence. This study used a program evaluation framework to evaluate the MASS intervention among intermediate vocational education students and Youth Health Care professionals. Outcome indicators were primarily number of sick days, education fit, and school performance, and secondarily, seven health indicators. Process indicators were dose delivered and received, satisfaction, and experience. METHODS: The MASS intervention evaluation was conducted in ten intermediate vocational education schools. Students with extensive sickness absence from school in the past three months were included in either the intervention or control condition. Students completed a baseline and a six-month follow-up self-report questionnaire. Linear and logistic regression analyses were applied. Students and Youth Health Care professionals completed an evaluation form regarding their satisfaction and experience with the intervention. RESULTS: Participants (n = 200) had a mean age of 18.6 years (SD = 2.02) and 78.5% were female. The MASS intervention showed positive results on decreasing sickness absence in days (ß = -1.13, 95% CI = -2.22;-0.05, p < 0.05) and on decreasing depressive symptoms (ß = -4.11, 95% CI = -7.06;-1.17, p < 0.05). No effects were found for other health indicators (p > 0.05). A significant interaction revealed a decline in sickness absence in males (p < 0.05) but not in females (p > 0.05). Youth Health Care professionals found the application of the MASS intervention useful (n = 35 forms). The mean rating of students for the consultation within the MASS intervention was an 8.3 (SD = 1.3) out of 10 (n = 14 forms). CONCLUSIONS: Our study provides some indication that the MASS intervention has positive effects on decreasing both sickness absence and depressive symptoms among intermediate vocational education students. The Youth Health Care professionals who provided the consultation as part of the MASS intervention considered the intervention to be useful and stated that the consultation was delivered as intended in almost all cases. Students were generally satisfied with the intervention. We recommend that future research evaluates the MASS intervention in a large randomized controlled trial with a longer follow-up. TRIAL REGISTRATION: This study was prospectively registered in the Netherlands Trial Register under number NTR5556 , in October 2015.

Medical Advice for Sick-reported Students (MASS) in intermediate vocational education schools: design of a controlled before-and-after study.

BACKGROUND: School absenteeism, including medical absenteeism, is associated with early school dropout and may result in physical, mental, social and work-related problems in later life. Especially at intermediate vocational education schools, high rates of medical absenteeism are found. In 2012 the Dutch intervention 'Medical Advice for Sick-reported Students' (MASS), previously developed for pre-vocational secondary education, was adjusted for intermediate vocational education schools. The aim of the study outlined in this paper is to evaluate the effectiveness of the MASS intervention at intermediate vocational education schools in terms of reducing students' medical absenteeism and early dropping out of school. Additionally, the extent to which biopsychosocial and other factors moderate the effectiveness of the intervention will be assessed. METHODS: A controlled before-and-after study will be conducted within Intermediate Vocational Education schools. Schools are allocated to be an intervention or control school based on whether the schools have implemented the MASS intervention (intervention schools) or not (control schools). Intervention schools apply the MASS intervention consisting of active support for students with medical absenteeism provided by the school including a consultation with the Youth Health Care (YHC) professional if needed. Control schools provide care as usual. Data will be collected by questionnaires among students in both groups meeting the criteria for extensive medical absenteeism (i.e. 'reported sick four times in 12 school weeks or for more than six consecutive school days' at baseline and at 6 months follow-up). Additionally, in the intervention group a questionnaire is completed after each consultation with a YHC professional, by both the student and the YHC professional. Primary outcome measures are duration and cumulative incidence of absenteeism and academic performances. Secondary outcome measures are biopsychosocial outcomes of the students. DISCUSSION: It is hypothesized that implementing the MASS intervention including a referral to a YHC professional on indication, will result in a lower level of medical absenteeism and a lower level of school drop outs among intermediate vocational education students compared to students receiving usual care. The study will provide insight in the effectiveness of the intervention as well as in factors moderating the intervention's effectiveness. TRIAL REGISTRATION: Nederlands Trial Register NTR5556. Date of clinical trial registration: 29-Oct-2015.

Occupational physicians' perceived barriers and suggested solutions to improve adherence to a guideline on mental health problems: analysis of a peer group training.

BACKGROUND: Despite the impact of mental health problems on sickness absence, only few occupational health guidelines addressing these problems are available. Moreover, adherence has found to be suboptimal. To improve adherence to the Dutch guideline on mental health problems a training was developed for Dutch occupational physicians (OPs) focusing on identifying barriers and addressing them. The aim of this study was to provide an overview of the barriers that OPs perceived in adhering to the Dutch guideline on mental health problems as well as their solutions to overcome them. METHODS: A qualitative study was conducted using data from the peer group training. Thirty-two (6 groups of 4 to 6) OPs received a multiple-session interactive training over the course of a year, focusing on identifying and addressing barriers, using a Plan-Do-Check-Act approach. Sessions were audio-taped and transcribed verbatim. Thematic content analysis was performed by two researchers with a selection of 50 % (21 out of 42) of the transcripts to identify the perceived barriers and the suggested solutions, using AtlasTi 7.0. RESULTS: Knowledge-related barriers were perceived regarding the content of all parts of the guideline. Commonly perceived attitude-related barriers were a lack of self-efficacy to perform certain guideline recommendations and difficulties with changing habits and routines. External barriers that were commonly perceived were work-contextual barriers, such as a lack of time/work pressure, tight contracts between occupational health services (OHSs) and employers, and conflicting policy of and a lack of collaboration with other parties (e.g. employer, other healthcare providers). The most often tested solutions by OPs during the training were sharing information, experiences, tips and tricks and referring to existing tools, or developing new tools to facilitate guideline usage. CONCLUSIONS: Dutch OPs perceive a range of knowledge-related, attitude-related and external barriers in adhering to the guideline on mental health problems. The tested solutions during the training particularly seemed to focus on knowledge and attitude-related barriers. To optimally implement this or similar mental health guidelines, it may be important to complement guideline training and education of individual or groups of OPs, with interventions that address external barriers such as changing tight contracts, or improving communication and collaboration with other parties.

Exposure to and experiences with a computerized decision support intervention in primary care: results from a process evaluation.

BACKGROUND: Trials evaluating the effects of interventions usually provide little insight into the factors responsible for (lack of) changes in desired outcomes. A process evaluation alongside a trial can shed light on the mechanisms responsible for the outcomes of a trial. The aim of this study was to investigate exposure to and experiences with a computerized decision support system (CDSS) intervention, in order to gain insight into the intervention's impact and to provide suggestions for improvement. METHODS: A process evaluation was conducted as part of a large-scale cluster-randomized controlled trial investigating the effects of the CDSS NHGDoc on quality of care. Data on exposure to and experiences with the intervention were collected during the trial period among participants in both the intervention and control group - whenever applicable - by means of the NHGDoc server and an electronic questionnaire. Multiple data were analyzed using descriptive statistics. RESULTS: Ninety-nine percent (n = 229) of the included practices generated data for the NHGDoc server and 50 % (n = 116) responded to the questionnaire: both general practitioners (GPs; n = 112; 49 %) and practice nurses (PNs; n = 52; 37 %) participated. The actual exposure to the NHGDoc system and specific heart failure module was limited with 52 % of the GPs and 42 % of the PNs reporting to either never or rarely use the system. Overall, users had a positive attitude towards CDSSs. The most perceived barriers to using NHGDoc were a lack of learning capacity of the system, the additional time and work it requires to use the CDSS, irrelevant alerts, too high intensity of alerts and insufficient knowledge regarding the system. CONCLUSIONS: Several types of barriers may have negatively affected the impact of the intervention. Although users are generally positive about CDSSs, a large share of them is insufficiently aware of the functions of NHGDoc and, finds the decision support not always useful or relevant and difficult to integrate into daily practice. In designing CDSS interventions we suggest to more intensely involve the end-users and increase the system's flexibility and learning capacity. To improve implementation a proper introduction of a CDSS among its target group including adequate training is advocated. TRIAL REGISTRATION: Clinical trials NCT01773057 .

Implementation of multiple-domain covering computerized decision support systems in primary care: a focus group study on perceived barriers.

BACKGROUND: Despite the widespread availability of computerized decision support systems (CDSSs) in various healthcare settings, evidence on their uptake and effectiveness is still limited. Most barrier studies focus on CDSSs that are aimed at a limited number of decision points within selected small-scale academic settings. The aim of this study was to identify the perceived barriers to using large-scale implemented CDSSs covering multiple disease areas in primary care. METHODS: Three focus group sessions were conducted in which 24 primary care practitioners (PCPs) participated (general practitioners, general practitioners in training and practice nurses), varying from 7 to 9 per session. In each focus group, barriers to using CDSSs were discussed using a semi-structured literature-based topic list. Focus group discussions were audio-taped and transcribed verbatim. Two researchers independently performed thematic content analysis using the software program Atlas.ti 7.0. RESULTS: Three groups of barriers emerged, related to 1) the users' knowledge of the system, 2) the users' evaluation of features of the system (source and content, format/lay out, and functionality), and 3) the interaction of the system with external factors (patient-related and environmental factors). Commonly perceived barriers were insufficient knowledge of the CDSS, irrelevant alerts, too high intensity of alerts, a lack of flexibility and learning capacity of the CDSS, a negative effect on patient communication, and the additional time and work it requires to use the CDSS. CONCLUSIONS: Multiple types of barriers may hinder the use of large-scale implemented CDSSs covering multiple disease areas in primary care. Lack of knowledge of the system is an important barrier, emphasizing the importance of a proper introduction of the system to the target group. Furthermore, barriers related to a lack of integration into daily practice seem to be of primary concern, suggesting that increasing the system's flexibility and learning capacity in order to be able to adapt the decision support to meet the varying needs of different users should be the main target of CDSS interventions.

Oops I did it (again): Patient experiences of complications after non-invasive cosmetic procedures.

Whereas several quantitative studies have measured the impact of complications after cosmetic procedures on patients' lives, little qualitative research is available. To address this gap, we interviewed 20 patients attending a special filler complication consultation hour in the Netherlands. We conducted a reflexive thematic analysis, which resulted in three main themes: (1) complications: a patient's journey; (2) complications: the impact of procedures gone wrong; and (3) complications: a filler-free future? Throughout the interviews, the multifaceted impact of the complications was illustrated, which ultimately also demonstrated participants' negotiation of (negative) experiences with complications after cosmetic procedures within a neoliberal, consumerist environment. Within this context, particular discourses were advanced as others were obscured and/or rejected. Most significantly, issues of stigmatization and shame were tangible throughout the interviews as participants felt they (must) accept responsibility for the consequences of their own consumerist decision to undergo cosmetic procedures. Moreover, the participants' decision to undergo further cosmetic procedures after their complication illustrate the normality, or even normativity, of contemporary beauty practices. A final note regards some important implications for the industry in relation to providing adequate complication care.

A qualitative study on redefining normality in relatives of patients with advanced cancer.

OBJECTIVE: To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer. METHODS: An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited. Ten in-depth individual (relative only) and 16 dyad (relative and patient together) interviews were conducted, transcribed verbatim, and analyzed by means of thematic analysis, drawing on elements of grounded theory, combining both inductive and deductive elements. RESULTS: Two adaptation processes of (redefining) normality were identified: assimilation and accommodation. The latter was found to be the main way of adapting to new events. Assimilative coping strategies entailed "continuing to do the same activities as done before the disease," "difficulty accepting the situation," "avoiding to think about the disease," and "living in the short term." Accommodative strategies involved "arranging practical matters," "thinking about the future," "doing what is feasible," "engaging in new activities," "accepting the situation," "seeking distraction," "living in the short term," and "focusing on what truly matters in life." The interplay between the diagnosis and treatment of cancer, a deteriorating disease status, and the accompanying uncertainty about the future was of influence on the relatives' coping strategies. CONCLUSION: When the new situation is too divergent to assimilate, accommodation may be necessary for relatives to cope with the growing complexity of the consequences of their loved one's illness. Accommodative coping then involves accepting the changing reality and actively making the necessary adjustments to build resilience and cope with the new circumstances.

Persistent and de novo symptoms after cholecystectomy: a systematic review of cholecystectomy effectiveness.

BACKGROUND: Cholecystectomy is the preferred treatment option for symptomatic gallstones, but the exact relationship between cholecystectomies and symptoms still is unclear. This study aimed to assess the effectiveness of elective cholecystectomy for patients with cholecystolithiasis in terms of both persistent and de novo symptoms. METHODS: A systematic literature search was conducted in Pubmed and Embase. The search included studies comprising patients 18 years of age or older undergoing elective cholecystectomy for symptomatic cholecystolithiasis. The proportions of symptoms after cholecystectomy were calculated and then subdivided into persistent and de novo symptoms. RESULTS: A total of 38 studies reported the presence of postcholecystectomy symptoms. The results showed that upper abdominal pain, the main indication for cholecystectomy in the majority of the patients, mostly disappeared after surgery. However, it persisted in up to 33 % of the patients and arose de novo in up to 14 %. Diarrhea (85 %) and constipation (76 %) were the persistent symptoms most often reported, whereas upper abdominal pain and vomiting were the least often reported. Flatulence (62 %) was the most often reported new symptom. However, large variations in symptoms were found between studies. CONCLUSIONS: The review indicates that cholecystectomy often is ineffective with regard to persistent and de novo symptoms. The finding that the types and proportions of persistent symptoms differ from those that arise de novo suggests that this distinction may be useful in predicting which patients would and which would not benefit from a cholecystectomy.

Towards successful implementation of artificial intelligence in skin cancer care: a qualitative study exploring the views of dermatologists and general practitioners.

Recent studies show promising potential for artificial intelligence (AI) to assist healthcare providers (HCPs) in skin cancer care. The aim of this study is to explore the views of dermatologists and general practitioners (GPs) regarding the successful implementation of AI when assisting HCPs in skin cancer care. We performed a qualitative focus group study, consisting of six focus groups with 16 dermatologists and 17 GPs, varying in prior knowledge and experience with AI, gender, and age. An in-depth inductive thematic content analysis was deployed. Perceived benefits, barriers, and preconditions were identified as main themes. Dermatologists and GPs perceive substantial benefits of AI, particularly an improved health outcome and care pathway between primary and secondary care. Doubts about accuracy, risk of health inequalities, and fear of replacement were among the most stressed barriers. Essential preconditions included adequate algorithm content, sufficient usability, and accessibility of AI. In conclusion, dermatologists and GPs perceive significant benefits from implementing AI in skin cancer care. However, to successfully implement AI, key barriers need to be addressed. Efforts should focus on ensuring algorithm transparency, validation, accessibility for all skin types, and adequate regulation of algorithms. Simultaneously, improving knowledge about AI could reduce the fear of replacement.

Needs and preferences of patients regarding atopic dermatitis care in the era of new therapeutic options: a qualitative study.

To optimally tailor atopic dermatitis (AD) care to patients' needs, especially considering the many emerging therapeutic options, insight into patients' needs and preferences regarding AD care is needed. To explore patients' needs and preferences regarding AD care, a qualitative study consisting of three focus groups with a total of 20 adult AD patients was conducted. All sessions were transcribed verbatim and inductively analyzed using several phases of coding to create an overview of patients' needs and preferences. AD patients emphasized the need for a patient-tailored approach in all identified aspects of AD care. With regard to consultations, patients stressed the need for a personal approach and increased recognition of the disease impact, which should mainly be determined by patients. With regard to the organization of AD care, the need for psychosocial and medical supportive care as well as quick access to health-care providers during disease flares was emphasized. Within the decision-making process, patients indicated that the provided information, the role of the patient and physician, whether or not treatment goals should be set, and decisive factors for indication and feasibility of novel therapies should be patient dependent. AD care should be patient tailored with increased attention for the psychosocial burden, as well as better access to health care during disease flares. To provide patient-tailored care, the personal situation, needs, and preferences of the patient should be taken into account in the therapeutic decision-making process, with respect for the autonomy of the patient.

Perceived adherence and associated barriers to the national atopic dermatitis guideline: A survey among general practitioners.

BACKGROUND: General practitioners (GPs) have an important role in managing patients with atopic dermatitis (AD). Although pivotal, adherence to dermatological guidelines in general practice has not been assessed. OBJECTIVES: To assess GPs' perceived adherence and barriers to the Dutch AD guideline. METHODS: A survey was conducted among 391 GPs in the Netherlands between December 2021 and May 2022. GPs rated their perceived adherence and perceived barriers concerning five key recommendations of the AD guideline, following an existing framework. The correlation between perceived adherence and barriers was investigated using Spearman's rank correlation. RESULTS: A total of 213 GPs (54%) participated. Perceived adherence rates varied across recommendations (43.7% to 98.1%). Lowest adherence was reported for recommendations concerning topical corticosteroids (TCS). Across all recommendations, patient factors (65.6%; SD 11.6) and lack of applicability to specific patient groups (29.5%; SD 10.5) were reported most frequently as barriers. The overall correlation between adherence and barriers was strongest for knowledge (ρ .55; SD .10) and attitude-related factors (range: ρ .40--.62). CONCLUSION: GPs' perceived adherence and barriers vary substantially across recommendations of the AD guideline. In particular, GPs reported lower adherence to recommendations concerning TCS. Next to patient-related factors, strong correlations between adherence perceived by GPs and knowledge and attitude-related barriers suggest the importance of addressing these factors as well to improve adherence.

Complex skin cancer treatment requiring reconstructive plastic surgery: an interview study on the experiences and needs of patients.

To provide patient-centered care, it is essential to explore what patients consider important and to adjust care accordingly. This may specifically be relevant for patients with complex skin cancer, for whom the care process is often more complicated and psychological and social problems may play a larger role. The objective was to explore the experiences and needs of patients who had undergone surgical treatment by a dermatologist for a complex skin cancer with a subsequent reconstruction by a plastic surgeon. An interview study was conducted among 16 patients who had undergone surgical treatment by a dermatologist and reconstruction by a plastic surgeon for basal cell carcinoma, cutaneous squamous cell carcinoma, or lentigo maligna. The interviews focused on patients' experiences and needs regarding care using a predefined topic list. All interviews were audio-taped, transcribed verbatim and inductively analyzed using Atlas.ti. Patients reported a need for a skilled and friendly physician who tailors information and communication to their individual situation. A need for continuity of care and improved collaboration between healthcare providers was also emphasized. Furthermore, patients experienced complications and unmet expectations and expressed a need for shared decision-making at various steps throughout the treatment process (depending on age). Patients also considered completeness of tumor removal, follow-up visits with multiple specialists to be planned the same day and recognition of the psychological impact of the disease on the partner important. To improve patient-centered care for complex skin cancer patients, more efforts should be directed towards improving continuity of care and collaboration. Furthermore, it is advocated for physicians to be sensitive to the individual needs of patients and their partner and adjust information, communication and (supportive) care accordingly.

Process evaluation of a multicentre randomised clinical trial of substituting surgical excisions of low-risk basal cell carcinomas from secondary to primary care.

OBJECTIVES: In 2016, the SKINCATCH Trial, a clustered multi-centre randomised trial, was initiated to assess whether low-risk basal cell carcinomas (BCCs) can be treated by general practitioners (GPs) without loss of quality of care. The trial intervention consisted of a tailored 2-day educational course on skin cancer management. The aim of this process evaluation was to investigate GPs' exposure to the intervention, implementation of the intervention and experiences with the intervention and trial. RESEARCH DESIGN AND METHODS: Data on exposure to the intervention, implementation and experiences were obtained at several points during the trial. Complementary quantitative components (ie, surveys, database analysis, medical record analysis) and qualitative components (ie, interviews and focus groups) were used. Quantitative data were analysed using descriptive statistics; qualitative data were summarised (barrier interviews) or audiorecorded, transcribed verbatim and thematically analysed using Atlas.Ti (focus groups). RESULTS: Following a 100% intervention exposure, results concerning the implementation of the trial showed that aside from the low inclusion rate of patients with low-risk BCCs (n=54), even less excisions of low-risk BCCs were performed (n=40). Although the intervention was experienced as highly positive, several barriers were mentioned regarding the trial including administrative challenges, lack of time and high workload of GPs, low volume of BCC patients and patients declining to participate or requesting a referral to a dermatologist. CONCLUSIONS: Although GPs' participation in the highly valued training was optimal, several barriers may have contributed to the low inclusion and excision rate of low-risk BCCs. While some of the issues were trial-related, other barriers such as low patient-volume and patients requesting referrals are applicable outside the trial setting as well. This may question the feasibility of substitution of surgical excisions of low-risks BCCs from secondary to primary care in the current Dutch setting. TRIAL REGISTRATION NUMBER: Trial NL5631 (NTR5746).