Social challenges and support needs of patients with hemophilia in Pakistan: a qualitative exploratory study

The global older adult population is expanding, projected to reach two billion by 2050. Pakistan, a low- and middle-income country (LMIC), is home to 7% of its older adult population (above 60). Physical inactivity is prevalent in this group, linked to chronic diseases and mental health disorders. However, little is known about its determinants. This study explores physical activity factors (facilitators and barriers) at individual, interpersonal, community, and policy levels among older adults in Karachi. A qualitative exploratory study was conducted in two Karachi districts using a purposive sampling. A total of 24 older adults aged 60 and above, with no physical limitations, were interviewed at their residences. Semi-structured interview guide informed by the socioecological model (SEM) was used. Data analysis followed Braun and Clark’s thematic analysis, using inductive deductive open coding. Four themes corresponding to each level of the socioecological model were identified. At individual level, health benefits and use of technology were identified as the facilitators, while physical (e.g., joint pain), and psychological factors (e.g., low motivation), and resource limitations (e.g., time) were identified as barriers. At interpersonal level, support from children and grandchildren was identified as the facilitators, while social media influences (e.g., smartphones) were identified as a major barrier. At community-level facilitators identified include presence of community-based centers and peer groups while barriers include norms and attitudes (e.g., societal views), more so for women, which hinder participation, compounded with poor infrastructure, safety and security issues. At policy level, participants emphasized the need for dedicated spaces and policies promoting PA for older adults. This is one of the first studies from Pakistan diving deeper into key facilitators and barriers related to physical activity among older adults in Pakistan. Context-specific interventions should be designed to overcome these barriers while considering the prevailing environmental and cultural dynamics of Karachi. Findings can help the decision makers at the municipal level and health departments in shaping targeted interventions for health promotion and active ageing.

Introduction: Integration of patient-reported outcome measures (PROMs) in routine clinical care is growing but lacks consolidated evidence around its impact on pediatric care. This systematic review aims to evaluate the impact of integrating PROMs in routine pediatric clinical care on various outcomes in pediatric clinical care.Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and Cochrane Library. Web of Science database was searched selectively to ensure extended coverage.Study Selection: We included longitudinal studies reporting on the integration of PROMs in routine pediatric clinical care of chronic diseases. Studies in languages other than English, published prior to the year 2000, and reporting on secondary data were excluded.Data Extraction: Two reviewers independently extracted data from included studies. Extracted data included citation of each study, type of healthcare setting, location of the study, characteristics of patient population, type of chronic disease, name and type of PROM, mode of administration, and reported outcomes.Results: Out of 6,869 articles, titles and abstracts of 5,416 articles and full text of 23 articles were screened in duplicate. Seven articles reporting results from six studies met eligibility criteria. Integration of PROMs increased the identification and discussion around health-related quality of life (HRQOL), especially in psychosocial and emotional domains, but showed mixed results with the impact on quality of care. No studies assessed the impact of integrating PROMs on healthcare utilization.Limitations: Due to significant heterogeneity in the studies, a meta-analysis was not conducted.Conclusions: Integrating PROMs could have a positive impact on HRQOL; however, further studies are required to determine the impact of PROMs in routine pediatric clinical care.

Experiencing a patient’s suicide can have a considerable emotional and behavioral impact on psychiatrists. Knowledge about good aftercare for them is still lacking. To gain more insight into the impact of suicide on psychiatrists and into improvement of their recovery. An exploratory qualitative descriptive study using semi-structured interviews conducted with five psychiatrists working at a large Dutch mental health institution. Five themes were distinguished: emotional impact, stacking and workload, taking responsibility, feelings of being held accountable and perceived support. Suicides made a profound emotional impression on all psychiatrists. Experienced emotions varied in nature and duration. Due to the accumulation of incidents and workload, the psychiatrists experienced little room for recovery. They felt a great responsibility to provide good aftercare for family and colleagues as well as to manage formal matters properly. They also felt that they are held accountable. Emotional support from colleagues was experienced as very valuable. Practical support was missed. For the mental well-being of psychiatrists, it is important for them to receive both emotional and practical support in the aftermath of a patient’s suicide. This requires a joint approach from fellow practitioners as well as policy makers. Training is indispensable in this regard.

Hematology nurses' perceptions of implementing primary palliative care for patients with multiple myeloma: A qualitative study.

Family engagement in interdisciplinary rounds is a patient- and family-centered approach to critical care that allows family members to be present and participate in information sharing and clinical decision-making with the health care team. However, this approach has not been adopted as standard practice in adult critical care units. Thus, family engagement in care for critically ill patients remains an inconsistent practice. Moreover, it remains an underresearched family-centered care intervention. Research is needed to understand health care professionals' perspectives on feasible ways of integrating family inclusion and engagement into clinical practice flow to potentially shape the future of family engagement in care for critically ill patients. This qualitative exploratory research study aimed to (1) explore and understand the registered nurses' and physicians' perspectives on current practices and feasible approaches to family inclusion and engagement during patient- and family-centered interdisciplinary rounds and (2) identify the facilitators and barriers to implementing this vital practice. A qualitative exploratory research study was conducted to inform the main study, a randomized controlled trial that tested the impact of the Nurse-TECH-Family program during patient- and family-centered interdisciplinary rounds in the intensive care unit. For this focus group study, 7 health care providers working in an adult critical care unit were recruited via email, referrals, and personal contact. The focus group included 4 registered nurses and 3 physicians working in the intensive care unit. It was conducted using structured questions via videoconferencing. The discussions were recorded and transcribed verbatim. A rigorous data analysis method was conducted using Braun and Clarke's constructionist and contextualist approach for thematic analysis. Two essential themes that reflected health care providers' perspectives on current critical care practice and feasible ways of integrating family inclusion and engagement into clinical practice were illuminated. The first theme conveys that rounds are "information-giving" that addresses family members' questions, transparency, shared decision-making, and less uncertainty among family members. The second theme denotes that rounds are a "safe space" for caring and compassion, which helps build trust. The health care providers also identified that the barriers to family engagement in patient- and family-centered interdisciplinary rounds include diverse perceptions and practices of family inclusion and engagement during rounds, difficulty establishing logistics in integrating family engagement in interdisciplinary rounds to clinical practice, and anxiety related to disclosure of information and uncertainty about family response. The identified facilitators are clear, consistent, realistic, and feasible interdisciplinary rounds logistics and information. This qualitative exploratory research study provided a deeper understanding of the registered nurses' and physicians' perspectives on current practices and feasible ways regarding family engagement during patient- and family-centered interdisciplinary and identified barriers to and facilitators for implementing this vital practice. The study's findings informed the researchers in the sampling, design, and plan for the intervention and setting for the randomized controlled trial. The findings can pave the way for a more focused, multifaceted approach and interventions to address family inclusion and engagement during interdisciplinary rounds in the critical care unit. This offers hope for improved patient outcomes and family experiences.

Cognitive behavior therapy (CBT) is a recommended treatment for eating disorders (ED) in adults given its evidence, mainly based on efficacy studies. However, little is known about how CBT works in routine clinical care. The goal of the present meta-analysis is to investigate how CBT works for various ED when carried out in routine clinical settings. Ovid MEDLINE, Embase OVID, and PsycINFO were systematically searched for articles published until June 2023. The outcome of CBT, methodological quality, risk of bias (RoB), and moderators of treatment outcome were examined and benchmarked by meta-analytically comparing with efficacy studies for ED. Fifty studies comprising 4299 participants who received CBT were included. Large within-group effect sizes (ES) were obtained for ED-psychopathology at post-treatment (1.12), and follow-up (1.22), on average 9.9 months post-treatment. Attrition rate was 25.5% and RoB was considerable in the majority of studies. The benchmarking analysis showed that effectiveness studies had very similar ESs as efficacy studies (1.20 at post-treatment and 1.28 at follow-up). CBT for ED is an effective treatment when delivered in routine clinical care, with ESs comparable to those found in efficacy studies. However, the evidence needs to be interpreted with caution due to the RoB in a high proportion of studies. Eating disorders are common in the population and often lead to multiple negative consequences. CBT has been found effective for ED and is recommended in clinical guidelines. Since these recommendations are primarily based on university studies we wanted to investigate how CBT performs in routine clinical care. Our meta-analysis found that CBT worked as well in routine care as in university setting studies.

Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs' psychosocial support needs that are delivered virtually and able to engage with patients both during and beyond inpatient admissions. Streetlight is a palliative care program designed for chronically ill AYAs. Developed as a complementary component that extends beyond the hospital setting, Streetlight Gaming and Online Team (SGOT) is an OHC aimed at facilitating social support to influence psychosocial outcomes. We investigated the existence and enactment of social support among chronically ill AYAs using SGOT and compared this to existing online social support categories to determine which support types are present within SGOT. This was a qualitative phenomenological study. We performed deductive thematic analysis based on existing online social support categories. Nine semi-structured interviews were conducted with SGOT participants. Social companionship/belonging, esteem/emotional, and informational support were most prevalent within SGOT. Thirteen subthemes emerged representing how social support impacted AYAs' psychosocial wellbeing. Notably, coping with/managing illness, sense of community and normalcy, recommendations and advice, and shared interests unrelated to illnesses were subthemes that resonated with AYAs and added value to their experiences. SGOT is an impactful OHC used to meet AYAs' social support needs. What makes SGOT especially unique is its virtual delivery, wherein AYAs can conveniently maintain beneficial relationships with other chronically ill same-aged peers. AYAs need spaces where they can feel normal and access continuous support, both within and beyond inpatient admissions. This study enhances our understanding of online AYA psychosocial support programs. Findings can be used by healthcare professionals to implement similar palliative care and psychosocial support programs.

The psychosocial difficulties of adults with congenital heart disease (CHD) warrant increased clinical attention. Up to a third of patients may have a diagnosable mood or anxiety disorder, and many experience social challenges and lifestyle and physical activity restrictions which can have negative quality of life (QoL) implications. Unfortunately, these issues are largely neglected in routine clinical care. Currently, however, there are no published psychosocial intervention studies to inform effective mental health treatment for patients with CHD. Resilience training interventions can promote psychosocial and physical well-being among people with chronic illness. The current study evaluated the effectiveness and acceptability of an empirically supported, Acceptance and Commitment Therapy-based resilience training program (READY: REsilience for Adults every DaY) in promoting resilience, mood, QoL, and heart-healthy behaviours of adult patients with CHD at a local teaching hospital. In view of the characteristics of CHD, a modified, briefer version of the program was trialled (READY-ACHD), with one 2-hour group session and four individual telephone sessions. A mixed-method approach to program evaluation was utilised, comprising an exploratory pre-post single intervention condition treatment design with 3-month follow-up assessment (n = 17) and a series of face-to-face focus group discussions with all relevant stakeholders (n = 12 patients, n = 3 caregivers, and n = 5 clinicians). Results of the intention-to-treat analyses revealed significant pre-post improvement in depression symptoms, T = 11.50, z = -2.17, p = .012, r = -.30, global QoL, T = 1.00, z = -2.49, p = .016, r = -.35, and environmental QoL, T = 13.00, z = -2.69, p = .005, r = -.38. Twenty-four per cent of patients showed clinically meaningful decline in depression at post-intervention. Improved global QoL was strongly associated with corresponding change in the ACT mechanism of cognitive defusion, rs = -.62, p = .014, controlling for pre-intervention effects. Patients indicated high satisfaction with READY-ACHD overall and reported diffuse qualitative improvements in resilience in their everyday lives and in coping with CHD. Caregivers and clinicians viewed the program as helpful and relevant to patients. Recommended modifications to maximise the benefit of the program to patients with CHD were additional group-based sessions, a longer implementation period to review and consolidate resilience-building strategies, and the inclusion of psychoeducation about CHD. This study provides preliminary support for READY-ACHD as an intervention that can be implemented as a group- and tele-based resilience training program in a hospital outpatient setting to improve depression and QoL. Findings can guide the future development and evaluation of interventions targeting the psychosocial needs of patients with CHD.

Background: Sexual function and satisfaction are 2 important components of sexual health. Both sexual function and satisfaction of women are influenced by various internal and external factors over their life cycle. This study aims to explore the factors of sexual function and satisfaction among nonworking married women in Bengaluru using a qualitative exploratory study. Materials and Methods: This is a qualitative exploratory research study that adopted an inductive thematic data analysis. In-depth qualitative interviews were conducted with 11 nonworking working married women of Bengaluru. The interviews were audio recorded, and the transcribed data were analyzed with ATLAS.ti software. The results were presented thematically. Results: It was found that somatic and personal factors such as health and appearance, pregnancy and postpregnancy issues, compatibility between couples, and spousal qualities; psychological factors such as stressors and stabilizers that related to emotional and mental health; and situational and extrinsic factors such as pressure to conceive, child-rearing, types of family, traditional beliefs and practices, societal stigma and taboo, daily schedules of couples, and ambiance and privacy were influencing the sexual function and satisfaction of women. Conclusion: The study could find positive and negative factors of sexual function and satisfaction. These factors need further exploration with larger studies from other cultures and groups.

The aims of this study are to describe for single, low-income, adolescent, African American new mothers how (1) primary sources of social support changed over time, (2) the level of social support (emotional, informational, tangible, and problematic) from these primary sources changed over time, and (3) social support from the primary supporter was associated with mothers' psychosocial well-being (self-esteem and loneliness) over time. A secondary analysis was conducted of data from a previous social support intervention study. The sample consisted of 35 single, low-income, adolescent (mean [SD] age, 18.3 [1.7] years), African American new mothers. Mothers completed social support, self-esteem, and loneliness instruments at 1 and 6 weeks and 3 and 6 months postpartum. Most mothers (64.7%) had changes in their primary social support provider during the first 6 months postpartum. The combination of the adolescent's mother and boyfriend provided the highest level of support, no matter the type, relative to any other source of support. At every time point, positive correlations were found between emotional support and self-esteem and between problematic support and loneliness. Single, low-income, African American, adolescent new mothers are at risk for not having a consistent source of support, which may lead to lower self-esteem and greater loneliness. Clinical nurse specialists could facilitate care guidelines for these new mothers to identify their sources of support at each home visit and advocate for the adolescent's mother and boyfriend to work together to provide support. Bolstering the mothers' natural sources of support can potentially improve self-esteem and reduce loneliness. Improvement in these sources of support could prevent a decline in the mothers' psychosocial well-being. Development and testing support interventions are advocated; findings could guide clinical nurse specialists in addressing these new mothers' needs.

<p dir="ltr"><b>Background</b></p><p dir="ltr">Tuberculosis (TB) is the predominant cause of death from a single infectious disease in low- and middle-income countries (LMICs), causing 1.3 million deaths in 2022. Poverty, undernutrition, and poor living conditions drive TB. The majority of TB disease occurs in people who are poor, with little or no savings and marginal income to defray costs. Nepal is an LMIC in South Asia with a high TB prevalence of 416 people per 100,000 population. TB is predominantly diagnosed using a passive case-finding strategy (PCF), where people who feel ill, visit the government health centers of their own volition, and health providers evaluate symptoms. Despite the routine TB diagnosis and treatment is free of charge, the economic burden relative to household income is high, and psychosocial consequences include depression and high levels of stigma towards people with TB and their households in Nepal. To overcome these barriers, Nepal’s National TB Program strategies, as well as global TB strategies such as the END TB strategy, acknowledge that ending TB requires a comprehensive set of proven interventions rather than just a single biomedical approach. This warrants the development of effective strategies to address complex factors contributing to the development of TB, improving access to healthcare and reducing the negative impact of having TB. To do so, there is a need for a context-specific comprehensive understanding of the determinants of TB, the psychosocial characteristics of people with TB, and the burden of impact due to having TB. In addition, geographical barriers to accessing health care are a significant challenge in Nepal. Exploring the potential of innovative technologies such as drones for improving healthcare delivery provides a promising avenue to overcome such barriers and enhance access to services in remote areas. However, the existing evidence on effective and innovative TB care models in Nepal is scarce.</p><p dir="ltr"><b>Aim</b></p><p dir="ltr">The thesis aims to provide context-specific evidence of barriers and facilitators to access TB diagnosis and care in Nepal and increase knowledge of the psychosocial characteristics and consequences of TB in Nepal.</p><p dir="ltr"><b>Methods</b></p><p dir="ltr">The data for the thesis was collected between July 2017 and December 2019 from five districts of Nepal (Chitwan, Makwanpur, Dhanusha, Mahottari, and Pyuthan). The thesis contains four studies (I-IV). Study I involved quantitative, prospective longitudinal cohort studies that interviewed 221 people with TB and 119 people without active TB disease (controls). The study used an adapted and validated WHO Patient Cost questionnaire with additional structured questions on TB stigma, depression, and quality of life. The study evaluated the psychosocial factors of TB among people with TB who were at 8-12 weeks (baseline) and 22-26 weeks (follow-up) of treatment and compared them with single interviews taken with controls. Study II also included the longitudinal cohort study design and the same questionnaire and used the data from 221 people with TB (111 ACF and 110 PCF) to characterize the psychosocial consequences of TB and evaluate the role of ACF in mitigating the impact. Studies III and IV were qualitative studies that used semi-structured focus group discussions (FGD) guides. Study III involved seven FGDs with 54 TB stakeholders to understand the barriers and facilitators of accessing and engaging with TB diagnosis and care. Study IV included five FGDs with 40 community stakeholders and healthcare providers in Pyuthan district which explored their perceptions on using cargo drones to support TB diagnosis.</p><p dir="ltr"><b>Results</b></p><p dir="ltr">Study I: The determinants of TB were poverty and lack of education. People in the two lowest tertiles poorer (adjusted odds ratio (aOR):2.31; 95% confidence interval (CI) [1.2 – 4.45]), poorest (aOR:2.84; 95%CI [1.39-5.79]) and without education (aOR: 2.92; 95%CI [1.28-6.67]) were associated with being a person with TB. People with TB were more likely to have depression in comparison to the controls when measured at baseline (25/221, 11% versus 0/119, 0%; p<0.001) and follow-up (11/221, 5% versus 0/119, 0%; p=<0.001) of TB treatment. Their self-rated quality of life was notably lower at baseline when compared with the controls (69.3 vs 81.5; p<0.001). However, the rating increased at follow-up and there was no difference between the two groups (80.3 vs 81.5; p=0.42). </p><p dir="ltr">Study II: Among people who had TB, at baseline, one in three had mild or major depression (68/221, 31%). Compared to baseline (25/221, 11%), the proportion of people reporting major depression reduced at follow-up (11/221, 5%). There was no difference in stigma score, depression, and quality of life among people with TB identified by ACF or PCF.</p><p dir="ltr">Study III: National multisectoral stakeholders perceived broader impediments to accessing and adhering to TB care, which encompassed individual, community, and health system levels. Such barriers included a lack of TB knowledge, psychosocial problems such as stigma, anxiety and depression, poor nutrition, low social support, and geographical impediments. However, the stakeholders perceived that these barriers could be addressed through basic health and TB education, mutual support, enhanced allowance from the NTP, and decentralized, community-based diagnostic services.</p><p dir="ltr">Study IV: Stakeholders in Pyuthan expressed trust in drones, viewing them as an advantageous tool for transporting sputum samples, reducing distance and time barriers for TB care, and fostering community development opportunities. Nevertheless, perceived challenges in operating drones for TB included financial sustainability and the technical capacity of local people to independently operate drones in Nepal.</p><p dir="ltr"><b>Conclusions</b></p><p dir="ltr">The findings in this thesis underscore the multifaceted challenges that people with TB in Nepal face during TB treatment. Poverty and lack of education were key determinants of TB. The results show that ACF has no role in mitigating stigma, depression, or improving quality of life. TB has profound effects on people because of stigma and depression during their treatment. These factors severely limit their ability to access and complete TB care pathways. This highlights the urgent need to integrate screening for depression into routine TB care. The studies also emphasize the need to enhance health and TB education, provide locally appropriate social protection interventions, and strengthen the health system by investing in the use of innovations such as drones to develop people-centered TB diagnosis and care in Nepal. Addressing the social, economic, and psychological dimensions of TB, alongside innovative healthcare solutions, will be key to achieving the goal of ending TB in Nepal.</p><h3>List of scientific papers</h3><p dir="ltr">I. Kritika Dixit, Bhola Rai, Noemia Teixeira de Siqueira-Filha, Raghu Dhital, Tara Prasad Aryal, Manoj Kumar Sah, Ram Narayan Pandit, Puskar Raj Paudel, Jens W. Levy, Job van Rest, Suman Chandra Gurung, Gokul Mishra, Knut Lönnroth, Stephen Bertel Squire, Laura Bonnett, Kristi Sidney Annerstedt, Maxine Caws, Tom Wingfield Poverty, food insecurity, stigma, depression and quality of life among people with and without tuberculosis in Nepal: a prospective cohort study with nested cross-sectional comparator arm. Infectious Diseases of Poverty. [Manuscript]</p><p dir="ltr">II. Kritika Dixit, Bhola Rai, Noemia Teixeira de Siqueira-Filha, Raghu Dhital, Tara Prasad Aryal, Manoj Kumar Sah, Ram Narayan Pandit,Puskar Raj Paudel, Jens W. Levy, Job van Rest, Suman Chandra Gurung, Gokul Mishra, Knut Lönnroth, Stephen Bertel Squire, Kristi Sidney Annerstedt, Laura Bonnett, Ahmad Fuady, Maxine Caws, Tom Wingfield. Stigma, depression, and quality of life among people with pulmonary tuberculosis diagnosed through active and passive case finding in Nepal: a prospective cohort study. BMC Global and Public Health. 2024; 2 (1). <a href="https://doi.org/10.1186/s44263-024-00049-2" rel="noreferrer" target="_blank">https://doi.org/10.1186/s44263-024-00049-2</a></p><p dir="ltr">III. Kritika Dixit, Olivia Biermann, Bhola Rai, Tara Prasad Aryal, Gokul Mishra, Noemia Teixeira de Siqueira-Filha, Puskar Raj Paudel, Ram Narayan Pandit, Manoj Kumar Sah, Govinda Majhi, Jens W. Levy, Job van Rest, Suman Chandra Gurung, Raghu Dhital, Knut Lönnroth, Stephen Bertel Squire, Maxine Caws, Kristi Sidney Annerstedt, Tom Wingfield. Barriers and facilitators to accessing tuberculosis care in Nepal: a qualitative study to inform the design of a socioeconomic support intervention. BMJ Open; 11(10):e049900. <a href="https://doi.org/10.1136/bmjopen-2021-049900" rel="noreferrer" target="_blank">https://doi.org/10.1136/bmjopen-2021-049900</a></p><p dir="ltr">IV. Kritika Dixit, Bhola Rai, Govind Majhi, Rajan Paudel, Raghu Dhital, Shraddha Acharya, Ganga Ram Budhathoki, Puskar Raj Paudel, Suman Chandra Gurung, Bishal Subedi, Pravin Lamsal, Uttam Pudasaini, Peter Small, Patrick Meier, Kristi Sidney Annerstedt, Maxine Caws. Healthcare providers' and community stakeholders’ perception of using drones for tuberculosis diagnosis in Nepal: An exploratory qualitative study. BMC Rural Health Services. [Manuscript]</p>

Background Management of ADHD requires multimodal treatments. Parental participation is one of the most important factors for effective ADHD treatment.Objective To investigate the effectiveness of behavioral parent training combined with routine clinical care, in reducing ADHD symptoms in children.Methods Quantitative and qualitative methods were combined in this study. This study was conducted at 3 growth and developmental clinics in Central of Java, on June-July 2016. The quantitative aspect was assessed by comparing ADHD quotient scores at pre- and post-intervention, while the qualitative aspect by intensive parental interviews. Parents of children with ADHD were randomized with block random sampling. In the treatment group, parents received behavioral training for 7 weeks, along with weekly routine clinical care for their children. The control group received only routine clinical care of the children. Six parents in the treatment group were randomly selected for intensive interviews.Results A total of 67 parents with their children were involved. Both groups’ ADHD quotient scores improved post-intervention. The treatment group ADHD quotient score was reduced from 120.53 to 116.41 (effect size Cohen’s d 0.68). The control group ADHD quotient score was reduced from 121.74 to 119.83 (effect size Cohen’s d 0.23). Mean difference post-intervention in both group was not significant (p=.161). After behavioral parent training, communication between parents and children increased and parents’ capability in directing their children’s daily activity increased.Conclusion Behavioral parent training can not enhacing effectiveness of routine clinical care to reduce ADHD symptoms in children.

Exploring the perspectives of early-stage postoperative glioblastoma patients and their caregivers on end-of-life care planning: An exploratory qualitative interview study.

PurposeWomen with breast cancer face many psychosocial problems. This study aims to determine the spiritual experiences of women diagnosed with breast cancer and the effect of these experiences on their psychosocial well-being.MethodsThe study was conducted with thematic analysis approach, and the sample consisted of women diagnosed with breast cancer (n = 15). The findings were obtained through individual semi-structured interviews, guided by the interview form presented in the Supplementary Materials. The thematic approach was employed to analyze data.ResultsThe main themes identified in this study were ‘spiritual empowerment and coping strategies during the breast cancer process’, ‘the impact of spirituality on social bonding and emotional support’, ‘empowerment and identity building through spirituality’, and ‘integration of spirituality into holistic cancer care’.ConclusionFindings of the present study revealed that spirituality contributes to strengthening the emotional and social support mechanisms of patients, helping them develop coping strategies, and improving their psychosocial well-being. Raising the sensitivity of healthcare professionals to spiritual care and integrating it into patient care can help address the psychosocial needs of patients more comprehensively. Furthermore, promoting spiritual counselling services may improve the psychosocial well-being of patients.Supplementary InformationThe online version contains supplementary material available at 10.1007/s00520-026-10569-2.

Over the past years, the druggable genome has expanded rapidly which has led to an increase in the number and complexity of biomarkers that need to be assessed in each single patient. The current increase in numbers and complexity of biomarkers puts the logistics and sustainability of molecular diagnostics under constant pressure. Consequently, uptake of newly discovered biomarkers is often delayed resulting in less than optimal access to rational treatment options and ultimately inequality of care. In addition, targeted drugs are increasingly used for tumor-agnostic approaches which renders a tumortype specific molecular diagnostic approach less suitable. Hence there is a strong need for one technique which captures all DNA aberrations of the tumour. A comprehensive technique, Whole Genome Sequencing (WGS), has become accessible for implementation into routine diagnostics as the costs have been decreasing. This thesis investigated i.a. the feasibility of WGS in routine care and the use of (whole) genome sequencing in rare tumour types such as cancer of unknown primary (CUP) and neuroendocrine tumours (NETs). The results of the WIDE (WGS Implementation in standerd Diagnostics for Every cancer patient) study show that WGS is feasible for 71% of patients with metastatic cancer. Additionally, it is a clinically valid test with an acceptable turn around times (median 11 working days). For 71% of patients a genetic biomarker was identified, which renders them eligible for a treatment (possibly in study setting). Consequently, 24% of patients started a biomarker based therapy after a median follow-up of 14 months. WGS proved its additional diagnostic value in germline diagnostics, with previously 49 unrecognized germline mutations being identified by WGS. Rare cancers have a more dismal prognosis than common cancers, potentially due to poor elucidation of the genomic alterations underlying tumorigenesis and lack of effective therapeutic options. WGS has added value by solving differential diagnosis in patients with a CUP. CUP is a heterogeneous group of cancers defined by the presence of metastatic disease without an identified primary tumour site despite modern imaging and extensive pathology work-up. CUP accounts for 3-5% of all metastatic cancers. A WGS-based 'cancer of unknown primary algorithm' (CUPPA) was developed based on tumour specific drivers, regional mutational density and mutational profile characteristics. CUPPA could identify primary tumour type in 68% (n=49) and detect actionable events in 47% of patients. Small intestinal neuroendocrine tumours (SI-NETs) are rare neoplasms arising from neuroendocrine cells of the bowel. Driver mutations were identified in approximately 50% of SI-NETs and potential targetable mutations in 21% SI-NETs. In conclusion, WGS-based diagnostics is feasible in routine pathology practice. The required adjustments to multiple logistic processes were perceived as manageable tot the health care professionals involved, indicating that implementation hurdles in adopting WGS in routine clinical care be overcome. As the costs of WGS will steadily decrease in the foreseeable future, the path is smoothed for implementation of WGS in routine clinical care, thereby optimally deploying precision oncology and supporting learning health care systems.