Patient-centered Care Approach Research Articles

Proton beam therapy in paediatric cancer: Anticipating the opening of the Australian Bragg Centre for Proton Therapy and Research.

Proton Beam Therapy (PBT) has the potential to improve paediatric cancer care by reducing radiation exposure and thus long-term toxicities. Ethical concerns and debates surrounding the treatment, such as eligibility and accessibility, are ongoing in Australia. The Australian Bragg Centre for Proton Therapy and Research (ABCPTR) (named after Sir William Henry Bragg who described the Bragg peak in his laboratory at the University of Adelaide in 1903) aims to increase access to PBT in Australasia and offer a patient-centred care approach. Research is underway to assess PBT's safety and cost-effectiveness, using tools including Normal Tissue Complication Probability (NTCP) models. Collaborative efforts are focused on developing tailored survivorship clinics to enhance patient follow-up and quality of life. With the anticipated opening of the ABCPTR, Australia is preparing to take a significant step in radiation oncology, offering new research opportunities and creating a publicly funded treatment centre. The initiative aims to balance treatment efficacy with patient care, setting the stage for a future in which radiation therapy will reduce long-term side effects compared to the current standard of care. The implementation of PBT in Australia represents a complex and promising approach to paediatric oncology. This article provides an overview of the current landscape, highlighting the potential benefits and challenges of a treatment that could redefine the quality of survivorship and contribute to global research and best clinical practice.

Sarcoidosis-Associated Pulmonary Hypertension

Sarcoidosis is characterized by non-necrotizing granulomatous aggregations affecting a range of organs, with thoracic structures involved in 90% to 95% of cases. This granulomatous disease can impact the pulmonary vasculature via different mechanisms resulting in sarcoidosis-associated pulmonary hypertension (SAPH). These include postcapillary disease (left heart disease), immune-mediated granulomatous vasculopathy, hypoxemia, thromboembolism, pulmonary vascular compression and/or stenosis by mediastinal lymph nodes/fibrosis, or sarcoidosis-related portal hypertension. SAPH is a serious complication, especially in those with end-stage lung disease. A thorough evaluation is crucial to delineate the predominant mechanism of PH in the affected individual. The management of SAPH is complex and necessitates a personalized, multifaceted approach, targeting the specific mechanisms and underlying pathologies. Such patients are best served at specialized Pulmonary Hypertension and Sarcoidosis Centers. A notable phenotype within SAPH is the “pulmonary arteriopathy” group, characterized by milder parenchymal disease and a favorable response to PAH-targeted therapy, whereas patients with active granulomatous inflammation are likely to respond to immunosuppression. Several PAH therapies have been used to treat SAPH, however, clear direction on the use of PAH therapies in SAPH is still lacking. Patients receiving pulmonary vasodilators should be carefully monitored for potential deterioration in gas exchange or development of pulmonary edema, which could suggest underlying left heart disease or pulmonary veno-occlusive disease. Timely referral for lung transplant evaluation is crucial for those with SAPH and severe parenchymal lung disease, ensuring a comprehensive and patient-centered care approach. Much work remains to be done to understand the exact pathogenesis of SAPH, as well as to develop therapies that clearly improve outcomes for these patients.

Economic evaluation of a multimorbidity patient centered care model implemented in the Chilean public health system

Multimorbidity and patient-centered care approaches are growing challenges for health systems and patients. The cost of multimorbidity patients and the transition to a new care strategy is still sightly explored. In Chile, more than 70% of the adult population suffer from multimorbidity, opening an opportunity to implement a Multimorbidity patient-centered care model. The objective of this study was to perform an economic evaluation of the model from the public health system perspective.The methodology used a cost-consequence evaluation comparing seven exposed with seven unexposed primary care centers, and their reference hospitals. It followed three steps. First, we performed a Time-Driven Activity-Based Costing with routinely collected data routinely collected. Second, we run a comparative analysis through a propensity score matching and an estimation of the attributable costs to health services utilization at primary, secondary and tertiary care and health outcomes. Third, we estimated implementation and transaction costs.Results showed savings in aggregate costs of the total population (-0.12 (0.03) p < 0.01) during the period under evaluation. Costs in primary care showed a significant increase, whereas tertiary care showed significant savings. Health outcomes were associated with higher survival in patients under the new care model (HR 0.70 (0.05) p < 0.01). Implementation and transaction costs increased as the number of pilot intervention centers increased, and they represented 0,07% of the total annual budget of the Servicio de Salud Metropolitano Sur Oriente. After three years of piloting, the implementation and transaction cost for the total period was USD 1,838,767 and 393,775, respectively.The study’s findings confirm the purpose of the new model to place primary health care at the center of care for people with non-communicable chronic diseases. Thus, it is necessary to consider implementation and transaction costs to introduce a broad health system multimorbidity approach. The health system should assume some of them permanently to guarantee sustainability and facilitate scale-up.

A Qualitative Study on the Experiences of Preclinical Students in Learning Clinical and Communication Skills at a Simulation Centre

IntroductionSimulation centres (SC) and its learning resources are now firmly established as part of medical education. In SC, medical students obtain both knowledge and skills based on a combination of theory and practice using provided resources. This study aims to explore medical students’ use of SC learning resources to learn clinical and communication skills based on Kolb’s experiential learning cycle. This is based on the research question ‘How are the SC resources useful in supporting preclinical medical students’ clinical and communication skills learning?’ The findings of the study can make a case for further enhancement of SC design and resources for medical students in the preclinical phase.MethodsA qualitative study involving 20 preclinical medical students with learning experiences in SC was conducted between December 2019 and 2020 at a medical school in Malaysia. Semi-structured interview questions were developed based on Kolb’s learning cycle. The data were thematically analysed using the six phases of Braun and Clarke’s thematic analysis.ResultsThree main themes were identified based on preclinical medical students’ experiences in SC; they were ‘preparation for authentic clinical experience’, ‘accessibility of multiple resources for learning and support’ and ‘opportunities to learn and improve’.ConclusionsThe SC’s resources have a significant and positive role in supporting preclinical medical students learn clinical and communication skills. The SC resources prepared them for authentic clinical experiences with a patient-centred care approach and self-directed learning opportunities. Social support from peers, peer tutors and academics emerged as a key finding and resource of the SC as they help preclinical students learn and improve.

Patients’ experiences of adverse symptoms, emotions, and coping strategies in connection to treatment of head and neck cancer - an interview study

PurposeThis study aimed to increase the understanding of emotions and coping strategies used by head and neck cancer patients before cancer treatment, and to explore their emotions and coping strategies in relation to symptoms and side effects after treatment. Furthermore, we aimed to investigate the patients’ perceptions of received treatment and support.MethodsSemi-structured in-depth interviews were conducted with 10 patients who had been treated for head and neck cancer, which included radiotherapy, at the Department of Oncology and the Department of Oral and Maxillofacial Surgery at Sahlgrenska University Hospital in Gothenburg. The interviews were analyzed in accordance with the method for Qualitative Content Analysis.ResultsThe result picture revealed three head themes. The first theme “Management of simultaneously influencing mind-sets before cancer treatment” described the patients experiences of feeling “Scared and worried,” “Lonely and disappointed,” and “Relieved and confident”, and how they tried to handle the diagnosis and preparations for treatment by “Applying a positive mind-set”, “Searching for support,” and “Trusting the healthcare system”. The second theme “Experiences of becoming a pale shadow of oneself”, illustrated experiences of affecting post-treatment symptoms and side effects. To which, the last theme “Handling contextual influencing experiences after cancer treatment” displayed post-treatment emotions of being “Shocked and disappointed” and “Concerned and unsupported” but also “Grateful and forward-thinking”, where strategies such as “Appreciating Life”, “Networking socially,” and “Adapting to the new life” were used.ConclusionsThe results indicated the need for a more patient-centered care approach, with clearer structures and improved individual support both before and after treatment and in connection to rehabilitation. Patients’ cognitive changes after cancer treatment should be considered in the aftercare, which should also include adaptation to situation and strengthening of patients’ self-management as a goal.

Patient-centered care frameworks, models and approaches: An environmental scan

Patient-centered care frameworks, models and approaches: An environmental scan

Feasibility of Goal Attainment Scaling as a patient-reported outcome measure for older patients in primary care

BackgroundGoal Attainment Scaling (GAS) is an outcome measure that reflects the perspectives and experiences of patients, consistent with patient-centred care approaches and with the aims of patient-reported outcome measures (PROMs). GAS has been used in a variety of clinical settings, including in geriatric care, but research on its feasibility in primary care practice has been limited. The time required to complete GAS is a barrier to its use by busy primary care clinicians. In this study, we explored the feasibility of lay interviewers completing GAS with older primary care patients.MethodsOlder adults were recruited from participants of a larger study in five primary care clinics in Alberta and Ontario, Canada. GAS guides were developed based on semi-structured telephone interviews completed by a non-clinician lay interviewer; goals were reviewed in a follow-up interview after six months.ResultsGoal-setting interviews were conducted with 41 participants. GAS follow-up guides could be developed for 40 patients (mean of two goals/patient); follow-up interviews were completed with 29 patients. Mobility-focused goals were the most common goal areas identified.ConclusionsStudy results suggest that it is feasible for lay interviewers to conduct GAS over the telephone with older primary care patients. This study yielded an inventory of patient goal areas that could be used as a starting point for future goal-setting interviews in primary care. Recommendations are made for use of GAS and for future research in the primary care context.

Superior Cluneal Nerve Schwannoma as a Cause of Intractable Ipsilateral Low Back Pain: A Case Report

BACKGROUND: Superior cluneal nerve (SCN) entrapment is an infrequent, yet commonly missed etiology of low back pain (LBP). The SCN is prone to entrapment as it travels through the iliocostalis muscle and exits thoracolumbar fascia via an osseofibrous tunnel as it courses over the iliac crest. CASE REPORT: A patient with chronic LBP exhibited new provocative sacroiliac joint testing not responsive to injections. Subsequent pelvis magnetic resonance imaging revealed a peripheral nerve sheath tumor of the right SCN. Although she exhibited an excellent response to therapeutic nerve blocks, her silicone allergy excluded her from peripheral nerve stimulation as a treatment option. She underwent SCN neurolysis and tumor resection by the neurosurgery department resulting in symptom resolution. CONCLUSION: Interventional pain physicians should consider SCN entrapment when diagnosing intractable LBP. In the event of rare etiologies of SCN entrapment, such as neurogenic tumors, a multidisciplinary patient-centered care approach should be sought for symptom management. KEY WORDS: Superior cluneal nerve, pain management, chronic pain, nerve block, schwannoma

Demographic differences in services utilization across in-person (2019), telehealth (2020), and hybrid (2021) outpatient substance use services in New York

ObjectivesMany outpatient substance use programs have experienced in-person, remote/telehealth, and hybrid models of care since the 2020 Covid-19 Pandemic. Changes in treatment models naturally affect service utilization and may affect treatment trajectories. Currently, limited research examines the implications of different health care models on service utilization and patient outcomes in substance use treatment. Here, we reflect on the implications of each model from a patient-centered care approach and review the implications on service utilization and outcomes. MethodsWe employed a retrospective, observational, longitudinal, cohort design to explore differences in demographic characteristics and service utilization among patients receiving in-person, remote, or hybrid services across four substance use clinics in New York. We reviewed admission (N = 2238) and discharge (N = 2044) data from four outpatient SUD clinics within the same health care system across three cohorts (2019, in-person; 2020, remote; 2021, hybrid). ResultsPatients discharged in 2021 (hybrid) had significantly more median total treatment visits (M = 26, p ≤ 0.0005), a longer course of treatment (M = 154.5 days, p ≤ 0.0001), and more individual counseling sessions (M = 9, p ≤ 0.0001) compared to the other two cohorts. Demographic analyses indicate more ethnoracial diversity (p = 0.0006) among patients admitted in 2021, compared to the other two cohorts. Over time, the proportion of individuals being admitted with a co-existing psychiatric disorder (2019, 49 %; 2020; 55.4 %, 2021, 54.9 %) and no prior mental health treatment (2019, 49.4 %; 2020, 46.0 %; 2021, 69.3 %) increased (p = 0.0001). Admissions in 2021 were more likely to be self-referred (32.5 %, p < 0.0001), employed full-time (39.5 %, p = 0.01), and have higher educational attainment (p = 0.0008). ConclusionDuring hybrid treatment in 2021, patients from a wider range of ethnoracial backgrounds were admitted and retained in care, patients with higher socioeconomic status (who were previously less likely to enter treatment) were admitted, and fewer individuals left against clinical advice (compared to the remote 2020 cohort). More patients successfully completed treatment in 2021. Service utilization, demographic, and outcome trends support a hybrid model of care.

Experience of Patients With Rheumatoid Arthritis: A Qualitative Study of a Nurse-Led Clinic.

Rheumatoid arthritis (RA) is an extremely prevalent chronic inflammatory rheumatic disease. This study explores the experiences of patients with RA under nurse-led care, the roles that nurses play, and the outcomes achieved when applying the patient-centered care (PCC) approach. A purposive sample of 12 participants who had been diagnosed with RA for at least 1 year were recruited from a nurse-led rheumatology clinic. They were also receiving treatment with disease-modifying antirheumatic drugs. All of the participants reported high levels of satisfaction with the care they received in the nurse-led clinic, along with high levels of medication adherence. The nurses were highly accessible to the participants, and they regularly communicated information regarding their symptoms, medication, and treatment management. These findings illustrate the importance of the holistic care that nurses provide to their patients, as the participants agreed that nurse-led services could have a wider outreach in hospitals and the community.

Nurse’s self-efficacy in patient engagement during the covid-19 pandemic

Introduction: Active patient involvement is part of a patient centered care approach that must be facilitated by all health care providers, including in the hospitals. The concern of nurses being exposed by the Covid-19 virus during this pandemic is one of obstacle and challenging during providing patient engagement in nursing care. Patient engagement is a methode to facilitate and support patient involvement in the care process by making patients as an active partner in improving their quality of care. Objectives: This study aims to determine the relationship between nurse self-efficacy and patient engagement in nursing care during the Covid-19 pandemic. Methods: This study used a cross sectional research design. The respondents in this study were all nurses in the inpatient room, whether it was a Covid or non-Covid inpatient room, totaling 238 nurses. Data collection in this study was carried out using an online questionnaire: the Self-Efficacy in Patient Centeredness Questionnaire (SEPCQ-27) and the Patient Engagement Index (PEI) questionnaire which had been modified by the researcher. Results: The results of bivariate analysis using Pearson correlation showed that there was a significant relationship between nurse self-efficacy and patient engagement (p &lt; 0.001). Conclusions: Nurses' self efficacy in engaging patients is an important internal factor for nurses to support optimal patient participation and active involvement in the nursing care process.

Third party disability of family members of adults with dysphagia.

Third-party disability (TPD) has been studied in multiple patients including those with aphasia and hearing loss. Only one study has been done in relation to caregivers of adults with dysphagia. Third-party disability has been analysed using the International Classification of Function and Disability (ICF) framework. This study, therefore, used the ICF model to explore TPD of caregivers of adults with dysphagia for the context of Johannesburg in South Africa. To describe how caregivers experience TPD when caring for adults with a dysphagia in Johannesburg. Data were collected from five primary adult caregivers, who were all family members, from government clinics in Johannesburg. This article reports the findings from the interviews that were analysed thematically using a top-down analysis approach. Caregivers experienced challenges related to TPD mostly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. The use of body structure and function from the ICF model was not overtly applicable to the caregiver population. A new visual representation has been suggested to highlight the key themes to augment the social and psychological changes as seen on the ICF framework and demonstrated the specific interaction that these factors had on one another. Third-party disability is present in caregivers of patients with dysphagia. Healthcare workers need to be aware of the impact that this can have when preparing home management strategies. This newly devised representation can assist in creating a locally relevant patient-centred care approach but requires future input. This article has provided greater insight into TPD in caregivers of adult patients with dysphagia in an urban African context. It has led to new information that can be used as an adjunct to the ICF model when understanding this phenomenon.

Patient-Centred Care Dentistry And Its Relation With Maqasid Shari’ah: A Narrative Review

Patient-centred care dentistry offers positive treatment outcome by unique combination of dental practitioners and their patients to improve quality of care and overall health outcomes. As Muslim dental practitioners, they must adhere with the Islamic principles and values in treating their patients with the Maqasid Shari’ah that blended in patient centred care approach. The concept of Maqasid Shari’ah is the purpose and objective of Shari’ah that formulated in the protection of religion, soul, mind, heredity and property. Apart from that, Qawaid Fiqhiyah is the methods that used in solving dental fiqh issues nowadays and that legal maxims is endorsed by the Muslim scholars or authorities. Finally, the dental treatment goal is to increase patients’ quality of life as a servant of Allah and khalifah in the Earth.

Critiquing the Unintended Pregnancy Framework.

The unintended pregnancy framework, a central tenet of sexual and reproductive health care delivery and research, has been depicted as an adverse outcome that should be prevented. There is growing criticism of the inadequacies of this framework, although little modification in public health guidelines, measurement, or clinical practice has been seen. This article critically reviews the literature on unintended pregnancy to encourage reflection on how this framework has negatively influenced practice and to inspire the advancement of more patient-centered care approaches. We begin by outlining the historical origins of the unintended pregnancy framework and review how this framework mischaracterizes patients' lived experiences, fails to account for structural inequities, contributes to stigma, and is built upon weakly supported claims of a negative impact on health outcomes. We close with a discussion of the relationship between health care provision and unintended pregnancy care and the implications and recommendations for realigning clinical practice, research, and policy goals.

Psychometric Evaluation of the Arabic Version of the Person-Centered Climate Questionnaire: Patient Version (PCQ-P).

Adopting a person-centered care approach has transformed different healthcare settings worldwide. However, this concept has gained little attention in many Middle Eastern countries, including Saudi Arabia and other Arab countries. This study aimed to evaluate the psychometric characteristics of the Arabic person-centered climate questionnaire-patient version, measuring to what extent the climate of health care settings is perceived as being person-centered. This is a psychometric analysis study. The original validated version of the English Person-Centered Climate Questionnaire-Patient version (PCQ-P) was translated into Arabic and tested among a sample of hospital patients (n = 300) in Saudi Arabia using translation and back translation procedures. For psychometric evaluation, statistical analyses of validity and reliability were used, including exploratory factor analysis as well as conformity analysis. The Arabic version of the person-centered climate questionnaire-patient version-showed good reliability as the Cronbach's alpha value of the total of 17 items was 0.84, and the Cronbach's alpha values of the three sub-scales (safety, everydayness, and hospitality) were 0.83, 0.56, and 0.68, respectively. Internal consistency results were high in terms cof orrelation coefficient for all 17 items. The exploratory factor analysis identified the three factors (safety, everydayness, and hospitality) responsible for 47.174% of the total variance. The Arabic version of the PCQ-P showed satisfactory reliability and validity for measuring patients' perceptions of person-centeredness in Arab healthcare settings. This Arabic version will be accessible to those interested in generating and using empirical evidence to promote a patient-centered care approach in Arab healthcare settings. The results of this study can be used as a starting point for assessing and developing a person-centered care culture in Saudi hospitals and other Arab countries in the Middle East.

Inborn errors of metabolism: a specialty at the forefront of precision medicine

Advances in bioanalytical technologies such as high throughput sequencing have paved the way for an exponential increase in the discovery of inborn errors of metabolism (IEM), which now sum up to more than 1800 IEM. These powerful technologies play a decisive role in shortening the diagnostic odyssey of patients affected by rare diseases. Yet, their added value in guiding therapy is still limited. Metabolic medicine remains a growing discipline that is particularly dependent on specialized laboratory analyses and has adopted early on the fundamental concept of a patient-centered care approach. The discovery of phenylketonuria (PKU) as a treatable cause of mental retardation has hence led to the implementation of newborn screening. With this example, we highlight some key concepts in caring for patients affected by IEM.

Health Literacy and Serious or Persistent Mental Illness: A Mixed Methods Study.

Health literacy is increasingly recognized as a major determinant of health; however, our insights into the health literacy strengths and needs of adults living with serious or persistent mental illness remain limited by a notable lack of research in this area. Improving our understanding is important because people in this group are especially vulnerable to numerous negative health outcomes, many preventable. To assess the health literacy strengths and needs of people living with serious or persistent mental illness in terms of their ability to acquire, understand, and use information about their illness and the health services they require. A cross-sectional convergent mixed methods design guided by the Ophelia Access and Equity Framework. People diagnosed with serious or persistent mental illness were offered participation. Quantitative and qualitative data was collected using questionnaires (Health Literacy Questionnaire [HLQ], World Health Organization [WHO-5]) and semi-structured interviews. Hierarchical cluster analysis identified and grouped participants with similar health literacy scores into mutually exclusive groups, for the development of clinical vignettes. Participants struggled most with the appraisal of health information (HLQ mean 2.72, standard deviation [SD] .63 [scale 1-4]) and navigating what they often perceived to be a confusing health care system (HLQ mean 3.29, SD .79 [scale 1-5]). On the other hand, most participants reported positive experiences with their health care providers (HLQ mean 3.19, SD .62 [scale 1-4]) and generally felt understood and supported. The cluster analysis suggests we should not assume people living with serious or persistent mental illness have homogeneous HL strengths and needs, meaning a one-size-fits-all solution for improving health literacy in this diverse group will likely not be a successful strategy. It will be important to explore solutions that embrace patient-centered care approaches. This study is one of only a handful assessing the health literacy strengths and needs of people living with serious or persistent mental illness. By collecting both quantitative and qualitative data, then analyzing the results using sophisticated cluster analysis methods, the authors were able to develop clinical vignettes per the Ophelia Framework that offer results in a practical way that can be readily understood and acted upon by stakeholders. We found that the HLQ is a measure of HL that is acceptable to mental health clients, and our findings provide preliminary data on the use of this instrument in the mental health population. [HLRP: Health Literacy Research and Practice. 2023;7(1):e2-e13.] Plain Language Summary: This study explored the health literacy strengths and needs of people living with serious or persistent mental illness. The results showed a mix of strengths and needs among our participants, though several consistent themes emerged. Most of our participants felt understood and supported by their health care providers, but many often struggle with judging the quality of health information and finding their way through the health care system.

Muslim Dietitian-patient Spiritual Conversations and Its’ Challenges: A Descriptive Cross-sectional Study

Introduction: Spirituality is essential in patient care. In dietetics, the patient-centred care approach has a significant role in promoting caring relationships with the patients in dietary counselling. While integrating spirituality in clinical practice influences patients’ ability to cope with illness, there is a paucity of research on spirituality in dietetics. This study aimed to discover the proportion of Muslim dietitians who inquired about patients’ spiritual needs and its association with socio-demographic factors, identify selected conversations on spiritual concern and its challenges. Method: This cross-sectional study adopted selected items from The International NERSH-Cohort questionnaire. A new semi-structured question on responses to patients’ spiritual concerns was also evaluated (4 items; alpha=.79). Data were gathered through an online survey and analysed using descriptive analysis and Pearson chi-square.Results: Out of ninety-eight respondents, only 3% reported always making an attempt to inquire about patients’ spiritual needs, whereas 44% had never made such an inquiry. The duration of practising dietetics was not associated with inquiring spiritual needs practices. When the Muslim patients brought up a discussion on spiritual concern, 38% of the Muslim dietitians had responded that only Allah has the power to heal and grant happiness. This study highlights that Muslim dietitians’ most common obstacles to addressing spiritual concerns during dietary counselling were the fear of offending the patients and insufficient knowledge/training. Conclusion: There are ways for Muslim dietitians to engage in spiritual conversations during dietary counselling, but the existing challenges indicate a calling for formal training.

Alignment of patient-centredness definitions with real-life patient and clinician experiences: A qualitative study.

Patient-centred care (PCC) has come to the forefront for many institutions, funding agenciesand clinicians, and is integrated into care. Does a disconnect in understanding still exist between patients, healthcare organizationsand clinicians in what PCC means and how outstanding issues might be addressed? We conducted interviews and focus groups with self-reported chronic care patients and clinicians providing care to these patients exploring PCC experiences, expectationsand practices. These data were initially analysed using inductive thematic analysis. This paper reports on the findings of a secondary analysis examining the alignment between patients and clinicians on five key predetermined dimensions of PCC. Eighteen patients participated, representing a range of chronic conditions. Thirty-eight clinicians participated. One thousand and three hundred patient and 1800 clinician codes were identified and grouped into 5 main topics with 140 unique themes (patients) and 9 main topics with 54 unique themes (clinicians). A total of 166 quotes (patient = 93, clinician = 73) were identified for this PCC definition alignment analysis. Partial or complete alignment of patient and clinician perspectives was seen on most dimensions. Key disconnects were observed in patient involvement, patient empowermentand clinician-patient communication. Only 18% of patients reported experiencing patient-centred communication, whereas 57% of clinicians reported using patient-focused communication approaches. Overall, study patients and clinicians endorse that many PCC elements occur. This study highlights key differences between patients and clinicians, suggesting persistent challenges. Clinician participants relayed their PCC approaches of informing and educating patients; however, patients often perceive these approaches as didactic, role-diminishingand noncollaborative. Collaborative approaches, such as shared decision-making,hold promise to bridge persistent PCC gaps and should be integrated into medical education programmes. This project was conceived and executed with a co-design approach wherein patients with chronic conditions who are trained in research (i.e., see descriptions of Patient and Community Engagement Research in the text) were involved in all stages of the research project alongside other researchers on the project team. Healthcare providers were involved as participants and as principal investigators in the project.

Enduring uncertainties. Medical accounts on caring for young people with variations of sex characteristics.

The diagnosis of intersex or variations of sex characteristics (VSC) often has a big impact on families who fear social stigmatization. Research has shown that intersex populations often experience important health disparities and that poor mental health and daily function are common among youth with VSC. The present study aimed to explore what healthcare professionals of adolescents and young adults (AYA) with VSC find important in terms of care to this group of patients. Semi-structured interviews were conducted with Swiss healthcare providers involved in the care of youth born with an intersex variation. The qualitative data were analyzed using reflexive thematic analysis. Analysis resulted in six major themes: (1) With regard to patients' and families lived experiences, interviewees reported that fertility was as a major issue for parents but not for intersex youth as they were said to live in the moment. (2) Respondents considered various forms of psycho-social care (professional support, peer support and informal support from family and friends) to be of fundamental importance for their patients, but many of them seemed critical about support from advocacy groups and activists. All healthcare providers reported significant gaps in (3) the transition process and (4) the establishment of multidisciplinary care teams due to structural, provider- and patient-related barriers. (5) Participants were in favor of a more holistic and patient-centred care approach and (6) were critical about the medicalized use of DSD (disorder of sex development) with patients and families. These findings suggest that although clinicians work hard to implement a holistic approach to care, their intentions are often undercut by a desire to hold a position of medical control. Healthcare professionals need to come to see medical uncertainty not only as a threat but also as an opportunity.