Patient Perspectives Research Articles

Patient perspectives on the unwanted effects of multidisciplinary pain management programmes: A qualitative study.

This study aimed to understand the impact of pain management programmes, focusing on the unwanted effects and their influence on patients' long-term use of self-management strategies. Qualitative study. Specialist musculoskeletal hospital in North London, England. Patients with chronic musculoskeletal pain that have completed a pain management programme. Multidisciplinary pain management programmes. Data were collected regarding patients' experiences and unwanted effects from the pain management programme using semi-structured interviews. Data were analysed using thematic analysis. Fourteen participant interviews were included in the analysis (median age 54 years, 12 females). Four themes were generated from the data: Benefits and burdens, Pain management programme and real life, Social support and Healthcare interventions. Unwanted effects included heightened anxiety related to negative interactions with peers, being in a new environment, worries about ability to cope with the programme, social anxiety from being in a group, the strain on families due to participants being away from home and a sense of abandonment at end of the programme. Burdens associated with implementing pain management strategies were identified, including the emotional burden of imposing their self-management on close family and competing demands with time and energy spent on self-management at the expense of work or home commitments. Pain management programmes have an important role in helping patients to learn how to self-manage chronic pain. Their unwanted effects and the treatment burdens associated with long-term self-management may be an important consideration in improving the longevity of their beneficial effects.

Validation of the Mexican version of the EORTC QLQ-CR29 in patients with colorectal cancer.

The evaluation of the quality of life (QoL) of patients with colorectal cancer (CRC) is an essential measure to measure the impact of the disease and treatments on the lives of patients. However, in Latin America there is no validated and reliable instrument to assess this construct. This study aims to validate the EORTC QLQ-CR29 instrument in the Mexican population with CRC. This study aims to validate the EORTC QLQ-CR29 instrument in the Mexican population with CRC. The study used an instrumental design and a nonprobabilistic sample due to availability, made up of 251 patients with CRC, with an average age of 54.7 ± 12.28 years. Exploratory and confirmatory factor analyses were performed, as well as concurrent validity tests. The exploratory factorial analysis yielded 4 factors that explained 51.64% of the variance, with a Cronbach reliability coefficient of .766 and an Omega index of .725. The confirmatory factor analysis indicated that the proposed theoretical model fits the data almost perfectly, with an error close to 0, which shows that it is a balanced and parsimonious instrument to measure the QoL of the patients with CRC. The EORTC QLQ-CR29 instrument proved to be a valid and reliable instrument for use in clinical care and research directed at patients with CRC in Mexico. Its use is recommended by multidisciplinary health teams in oncology in Mexico, since it allows knowing the patient's perspective on the impact of CRC on their life, guiding therapeutic decision-making and being a primary outcome measure.

Understanding Patient Perspectives on the Use of Gamification and Incentives in mHealth Apps to Improve Medication Adherence: Qualitative Study.

Medication nonadherence remains a significant health and economic burden in many high-income countries. Emerging smartphone interventions have started to use features such as gamification and financial incentives with varying degrees of effectiveness on medication adherence and health outcomes. A more consistent approach to applying these features, informed by patient perspectives, may result in more predictable and beneficial results from this type of intervention. This qualitative study aims to identify patient perspectives on the use of gamification and financial incentives in mobile health (mHealth) apps for medication adherence in Australian patients taking medication for chronic conditions. A total of 19 participants were included in iterative semistructured web-based focus groups conducted between May and December 2022. The facilitator used exploratory prompts relating to mHealth apps, gamification, and financial incentives, along with concepts raised from previous focus groups. Transcriptions were independently coded to develop a set of themes. Three themes were identified: purpose-driven design, trust-based standards, and personal choice. All participants acknowledged gamification and financial incentives as potentially effective features in mHealth apps for medication adherence. However, they also indicated that the effectiveness heavily depended on implementation and execution. Major concerns relating to gamification and financial incentives were perceived trivialization and potential for medication abuse, respectively. The study's findings provide a foundation for developers seeking to apply these novel features in an app intervention for a general cohort of patients. However, the study highlights the need for standards for mHealth apps for medication adherence, with particular attention to the use of gamification and financial incentives. Future research with patients and stakeholders across the mHealth app ecosystem should be explored to formalize and validate a set of standards or framework.

The patient experience of a postpartum readmission for hypertension: a qualitative study

BackgroundHypertensive disorders of pregnancy (HDP) are the most common cause of postpartum readmission. Prior research led to clinical guidelines for postpartum management; however, the patient experience is often missing from this work. The objective of this study is to understand the perspective of patients readmitted for postpartum hypertension.MethodsThis was a qualitative study with data generated through semi-structured interviews. Patients readmitted with postpartum HDP at an urban academic medical center from February to December 2022 were approached and consented for an interview. The same researcher conducted all interviews and patient recruitment continued until thematic saturation was reached (n = 9). Two coders coded all interviews using Nvivo software with both deductive and inductive coding processes. Discrepancies were discussed and resolved with consensus among the two coders. Themes were identified through an initial a priori template of codes which were expanded upon using grounded theory, and researchers were reflexive in their thematic generation.ResultsSix themes were generated: every pregnancy is different, symptoms of preeclampsia are easily dismissed or minimized by both patient and providers, miscommunication regarding medical changes can increase the risk of readmissions, postpartum care coordination and readmission logistics at our hospital could be improved to facilitate caring for a newborn, postpartum care is often considered separately from the rest of pregnancy, and patient well-being improved when conversations acknowledged the struggles of readmission.ConclusionsThis qualitative research study revealed patient-identified gaps in care that may have led to readmission for hypertensive disorders of pregnancy. The specific recommendations that emerge from these themes include addressing barriers to blood pressure management prior to discharge, improving postpartum discharge follow-up, providing newborn care coordination, and improving counseling on the risk of postpartum preeclampsia during discharge. Incorporating these patient perspectives in hospital discharge policy can be helpful in creating patient-centered systems of care and may help reduce rates of readmission.

Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany – a mixed-methods study

BackgroundRare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care. Thus, collaboration and information exchange between sectors is highly relevant. Our study focuses on the patient and caregiver perspective on intersectoral and interdisciplinary care between local healthcare professionals (HCPs) and centers for rare diseases in Germany. The aims were (1) to investigate patients’ and caregivers’ general experience of healthcare, (2) to analyse patients’ and caregivers’ perception of collaboration and cooperation between local healthcare professionals and expert centers for rare diseases and (3) to investigate patients’ and caregivers’ satisfaction with healthcare in the expert centers for rare diseases.ResultsIn total 299 individuals of whom 176 were patients and 123 were caregivers to pediatric patients participated in a survey using a questionnaire comprising several instruments and constructs. Fifty participants were additionally interviewed using a semistructured guideline. Most patients reported to receive written information about their care, have a contact person for medical issues and experienced interdisciplinary exchange within the centers for rare diseases. Patients and caregivers in our sample were mainly satisfied with the healthcare in the centers for rare diseases. The qualitative interviews showed a rather mixed picture including experiences of uncoordinated care, low engagement and communication difficulties between professionals of different sectors. Patients reported several factors that influenced the organization and quality of healthcare e.g. engagement and health literacy in patients or engagement of HCPs.ConclusionsOur findings indicate the high relevance of transferring affected patients to specialized care as fast as possible to provide best medical treatment and increase patient satisfaction. Intersectoral collaboration should exceed written information exchange and should unburden patients of being and feeling responsible for communication between sectors and specialists. Results indicate a lack of inclusion of psychosocial aspects in routine care, which suggests opportunities for necessary improvements.

Truncus arteriosus from prenatal diagnosis to clinical outcome: a single-centre experience.

The aim of this study was to review our institution's experience with truncus arteriosus from prenatal diagnosis to clinical outcome. and results: We conducted a single-centre retrospective cohort study for the years 2005-2020. Truncus arteriosus antenatal echocardiographic diagnostic accuracy within our institution was 92.3%. After antenatal diagnosis, five parents (31%) decided to terminate the pregnancy. After inclusion from referring hospitals, 16 patients were offered surgery and were available for follow-up. Right ventricle-to-pulmonary artery continuity was preferably established without the use of a valve (direct connection), which was possible in 14 patients (88%). There was no early or late mortality. Reinterventions were performed in half of the patients at latest follow-up (median follow-up of 5.4 years). At a median age of 5.5 years, 13 out of 14 patients were still without right ventricle-to-pulmonary artery valve, which was well tolerated without signs of right heart failure. The right ventricle demonstrated preserved systolic function as expressed by tricuspid annular plane systolic excursion z-score (-1.4 ± 1.7) and fractional area change (44 ± 12%). The dimensions and function of the left ventricle were normal at latest follow-up (ejection fraction 64.4 ± 6.2%, fractional shortening 34.3 ± 4.3%). This study demonstrates good prenatal diagnostic accuracy of truncus arteriosus. There was no mortality and favourable clinical outcomes at mid-term follow-up, with little interventions on the right ventricle-to-pulmonary artery connection and no right ventricle deterioration. This supports the notion that current perspectives of patients with truncus arteriosus are good, in contrast to the poor historic outcome series. This insight can be used in counselling and surgical decision-making.

The collaborative project "Personalized medicine for oncology" (PM4Onco) as part of the Medical Informatics Initiative (MII)

The collaborative project Personalized Medicine for Oncology (PM4Onco) was launched in 2023 as part of the National Decade against Cancer (NKD) and is executed within the Medical Informatics Initiative (MII). Its aim is to establish asustainable infrastructure for the integration and use of data from clinical and biomedical research and therefore combines the experience and preliminary work of all four consortia of the MII and the leading oncology centers in Germany. The data provided by PM4Onco will be prepared in asuitable form to support decision making in molecular tumor boards. This concept and infrastructure will be extended to 23 participating partner sites and thus improve access to targeted therapies based on clinical information and analysis of molecular genetic alterations in tumors at different stages of the disease. This will help to improve the treatment and prognosis of tumor diseases.Clinical cancer registries are involved in the project to improve data quality through standardized documentation routines. Clinical experts advise on the expansion of the core datasets for personalized medicine (PM). Information on quality of life and treatment outcomes reported by patients in questionnaires, which is rarely collected outside of clinical trials, will make asignificant contribution. Patient representatives are involved from the onset to ensure that the important perspective of patients is taken into account in the decision-making process. PM4Onco thus creates an alliance between the MII, oncological centers of excellence, clinical cancer registries, young scientists, patients, and citizens to strengthen and advance PM in cancer therapy.

Patient medication management, understanding and adherence during the transition from hospital to outpatient care - a qualitative longitudinal study in polymorbid patients with type 2 diabetes

BackgroundContinuity of care is under great pressure during the transition from hospital to outpatient care. Medication changes during hospitalization may be poorly communicated and understood, compromising patient safety during the transition from hospital to home. The main aims of this study were to investigate the perspectives of patients with type 2 diabetes and multimorbidities on their medications from hospital discharge to outpatient care, and their healthcare journey through the outpatient healthcare system. In this article, we present the results focusing on patients’ perspectives of their medications from hospital to two months after discharge.MethodsPatients with type 2 diabetes, with at least two comorbidities and who returned home after discharge, were recruited during their hospitalization. A descriptive qualitative longitudinal research approach was adopted, with four in-depth semi-structured interviews per participant over a period of two months after discharge. Interviews were based on semi-structured guides, transcribed verbatim, and a thematic analysis was conducted.ResultsTwenty-one participants were included from October 2020 to July 2021. Seventy-five interviews were conducted. Three main themes were identified: (A) Medication management, (B) Medication understanding, and (C) Medication adherence, during three periods: (1) Hospitalization, (2) Care transition, and (3) Outpatient care. Participants had varying levels of need for medication information and involvement in medication management during hospitalization and in outpatient care. The transition from hospital to autonomous medication management was difficult for most participants, who quickly returned to their routines with some participants experiencing difficulties in medication adherence.ConclusionsThe transition from hospital to outpatient care is a challenging process during which discharged patients are vulnerable and are willing to take steps to better manage, understand, and adhere to their medications. The resulting tension between patients’ difficulties with their medications and lack of standardized healthcare support calls for interprofessional guidelines to better address patients’ needs, increase their safety, and standardize physicians’, pharmacists’, and nurses’ roles and responsibilities.

Patients’ experiences with tele-mental health services during COVID-19 in Pakistan

Background: Although the concept of telehealth is of great interest globally, its potential has not yet been realized in Pakistan. It is therefore essential to explore the perspectives of stakeholders on the technology, particularly for mental health, to be able to increase and improve its use. Aim: To assess the perceptions and experiences of patients receiving tele-mental health services, including telepsychiatry and tele-psychotherapy, in Pakistan. Methods: For this qualitative exploratory study, we conducted in-depth interviews with 49 individuals at a tertiary care hospital in Karachi, Pakistan. Using the Cresswell framework for content analysis, we identified 3 major themes that focused on the positive and negative aspects of tele-mental health services and made suggestions for enhancing them. Results: Twenty-six of the participants received telepsychiatry, while the remaining 23 received tele-psychotherapy services. Technical literacy, cost of consultation, privacy, and therapeutic alliance were the major challenges identified by the patients, while convenience and the absence of stigma were highlighted as key facilitators for tele-mental health. Tele-consultations reduced travel and waiting time, thus improving access to healthcare. Participants suggested that the processes for booking appointments and making payments should be streamlined and the cost of tele-consultation reduced. Conclusion: This study provides insightful findings on tele-mental health services from the perspectives of patients living in an Asian culture. The major benefits highlighted were destigmatization of mental health and elimination of commuting costs and travel time. There were concerns about privacy, therapeutic alliance and availability and affordability of the technology.

Patient and clinician perceptions of blunt chest trauma management and recovery: a qualitative study

Purpose To explore patient and clinician perceptions of blunt chest trauma management and recovery, when discharged directly home from the Emergency Department (ED). Methods This was a qualitative study, completed in a trauma unit in Wales. Blunt chest trauma was defined as an isolated blunt injury to the chest wall, resulting in bruising or rib fractures. Data collection involved semi-structured telephone interviews and focus groups with patients and clinicians respectively. Data analysis was completed using reflexive thematic coding. Results Twelve patient interviews and three focus groups (23 clinicians) were conducted. In the interviews, seven males and five females participated, with a mean age of 54 years (range 28–74). Clinicians included nurses, doctors, and therapists. Two main themes emerged; 1) the ED experience and 2) recovery once home; each with a number of sub-themes. Results highlighted the significant impact of pain on recovery, and that there is a disjuncture between organisational perspectives of clinicians, and the individual personal perspective of patients. Discussion Recovery from blunt chest trauma for patients discharged directly home from the ED is a challenging and complex process. Protocol-driven care does not always lead to good patient experience, as it focuses primarily on hospital services and resources.

Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls.

For children with advanced cancer and their families, communication about prognosis is critical. Unfortunately, data demonstrate that prognostic communication occurs infrequently and inconsistently across advancing illness. Prior to developing an intervention to improve prognostic communication, we aimed to (1) characterize parent and oncologist perspectives on "best" approaches for prognostic communication, and (2) explore similarities and differences between parent and oncologist perspectives. Children with poor-prognosis solid tumors, their parents, and oncologists were followed prospectively for 24months or until death. Matched semi-structured interviews were conducted with parents and oncologists 0-7days after medical encounters at timepoints of disease progression or relapse. Reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality. A total of 68 interviews were conducted following serial disease reevaluation encounters involving 13 parents and five oncologists. Nine main themes were identified as "best" approaches: (1) speaking with honesty and clarity, (2) leaving room for hope, (3) leaning into a long-standing relationship, (4) personalizing language, (5) empowering the patient and family, (6) collaborating with the multidisciplinary team, (7) providing anticipatory guidance, (8) setting the scene, and (9) creating a therapeutic space. Parents and oncologists generally agreed on themes related to helpful communication approaches, while parents more explicitly described communication pitfalls. Parents and oncologists described clear recommendations for helpful communication strategies and pitfalls to avoid during difficult prognostic disclosure. Future work should integrate patient perspectives in the design and testing of an intervention to improve prognostic communication in advanced childhood cancer.

Personal scoping review: A novel review type with a personal touch.

The importance of incorporating patient and medical professional perspectives in medical research is increasingly recognized. However, formal platforms for these voices are limited. To address this gap, this study proposes a novel manuscript type, the Personal Scoping Review, within the Journal of Oral Rehabilitation. Personal Scoping Reviews utilize a qualitative design with semi-structured interviews to gather patient and professional perspectives. This approach offers flexibility and depth, allowing authors to explore diverse insights. The reviews focus on care, education and research agendas related to the topic, using the voices of individuals as primary evidence. Personal Scoping Reviews highlight concerns in patient care, educational needs and research gaps, offering a comprehensive view. By integrating diverse perspectives, these reviews provide valuable insights for improving medical research and practice. They facilitate the formulation of agendas to address key issues in care, education and research. By amplifying individual perspectives, these reviews aim to enhance the relevance and impact of research, ultimately benefiting patients and healthcare providers alike.

Impact of pandemic mobility restrictions on kidney transplant patients' experience: lessons on quality of care.

Patient perspectives on their post-operative health are acknowledged as valuable healthcare outcomes and should be scrupulously considered when designing interventions for patient-centered healthcare. Yet, following the COVID-19 lockdown and in the absence of standardized guidelines on how to best provide virtual chronic care to kidney transplant recipients, little is known about how this unique population coped and managed to comply with public health indications during confinement. This study addresses this shortcoming by examining the experiences of patients from a tertiary hospital in Spain during the initial weeks of the lockdown decreed by the national government. Specifically, we focus our attention on the perceptions and experiences of these patients by retrieving robust qualitative and quantitative data: the former based on a thematic analysis of focus group transcripts, the latter obtained from a large-scale survey. Our findings identify opportunities for improvement in the quality of care and point to the provisions that might be made when facing future pandemics or lockdown-requiring situations. As healthcare services navigate evolving landscapes, our findings on the experience of kidney transplant recipients should enable hospital services to improve the quality of care they are able to provide to such patients during periods of restricted mobility, especially those associated with future disease emergencies, and considering that home confinement is often part of the natural course of post-operative care of these patients.

Unmet Needs and Treatment Preference of Systemic Treatments for Moderate-to-Severe Psoriasis from the Perspectives of Patients and Dermatologists in China.

The treatment options for moderate to severe psoriasis (msPsO) in China have been greatly increased with the approvals of biologics. However, the unmet needs and treatment preferences of systemic treatments for msPsO in China remain unclarified. Fifty dermatologists and 300 patients with msPsO (41% with severe psoriasis) were surveyed for effectiveness, safety, treatment convenience, and treatment preferences (using a choice-based conjoint questionnaire). Descriptive statistics and conjoint simulation analyses were employed to summarize survey information and assess treatment preferences. Both patients and dermatologists reported shorter treatment duration for oral drugs (2.7-6.2months) than that for biologics (9.5-17.0months). The most frequently reported treatment discontinuation reasons by the surveyed patients and dermatologists were unsatisfactory effectiveness (average 84.5%) for oral drugs and loss of efficacy over time (average 68.5%) for biologics. Commonly reported treatment inconveniences included regular lab tests for traditional oral drugs (average 71.5%) and administration assistance for biologics (average 58.0%). Injection site reactions (average 51.5%) and needle fear (average 35.5%) were frequently reported for biologics among the surveyed patients and dermatologists. Once-daily oral treatment was preferred over biweekly subcutaneous injection treatment when the two had comparable attributes (average in patients 87.1% vs. 12.9%; average in dermatologists 93.4% vs. 6.6%). Unmet needs of systemic treatments remain for msPsO in China. Once-daily oral treatment is preferred over biweekly subcutaneous injections to treat msPsO when other treatment attributes are comparable.

A randomised, crossover trial exploring the patient perspective and effectiveness of biosimilar adalimumab transition: IBD reference and biosimilar adalimumab cross over study (iBaSS).

Patient satisfaction has been positively associated with adherence which is expected to impact outcomes. Although vital for successful implementation of biosimilar medicines, little is known about the patient perspective of transition. The aim of this study was to investigate clinical outcomes and patient experience of transitioning between reference adalimumab and a biosimilar (SB5). iBaSS is a phase IV single-centre, prospective, randomised, single-blind, cross-over study in adult subjects with Crohn's disease. Participants, stable on adalimumab before consent, received 24weeks of treatment with both reference adalimumab and SB5. The primary outcome was the proportion of patients maintaining baseline clinical status throughout each treatment period, with patients' perspective of disease control and treatment satisfaction assessed as secondary outcomes. A total of 112 participants, representative of the heterogeneous patient populations encountered in routine clinical practice, were enrolled. A similar proportion of participants maintained baseline clinical status through each treatment period: 81.8% with reference adalimumab and 79.5% with SB5. Patient reported outcomes (IBD-Control questionnaire (SB5: 15.5; reference adalimumab 15) and TSQM), adverse events and therapeutic drug monitoring remained consistent through both treatment periods, although a higher median injection pain VAS score was noted with SB5 (53/100 versus 6/100 with reference adalimumab). The number of switches undertaken in the study did not impact serum drug concentration or immunogenicity. This study, mimicking real world adalimumab transition, demonstrates that patients undertaking brand transition can be expected to have consistent clinical and satisfaction outcomes. Number 2018-004967-30.

Lessons learned from COVID-19: improving breast cancer care post-pandemic from the patient perspective

BackgroundSince the onset of the pandemic, breast cancer (BC) services have been disrupted in most countries. The purpose of this qualitative study is to explore the unmet needs, patient-priorities, and recommendations for improving BC healthcare post-pandemic for women with BC and to understand how they may vary based on social determinants of health (SDH), in particular socio-economic status (SES).MethodsThirty-seven women, who were purposively sampled based on SDH and previously interviewed about the impact of COVID-19 on BC, were invited to take part in follow-up semi-structured qualitative interviews in early 2023. The interviews explored their perspectives of BC care since the easing of COVID-19 government restrictions, including unmet needs, patient-priorities, and recommendations specific to BC care. Thematic analysis was conducted to synthesize each topic narratively with corresponding sub-themes. Additionally, variation by SDH was analyzed within each sub-theme.ResultsTwenty-eight women (mean age = 61.7 years, standard deviation (SD) = 12.3) participated in interviews (response rate = 76%). Thirty-nine percent (n = 11) of women were categorized as high-SES, while 61% (n = 17) of women were categorized as low-SES. Women expressed unmet needs in their BC care including routine care and mental and physical well-being care, as well as a lack of financial support to access BC care. Patient priorities included the following: developing cohesion between different aspects of BC care; communication with and between healthcare professionals; and patient empowerment within BC care. Recommendations moving forward post-pandemic included improving the transition from active to post-treatment, enhancing support resources, and implementing telemedicine where appropriate. Overall, women of low-SES experienced more severe unmet needs, which in turn resulted in varied patient priorities and recommendations.ConclusionAs health systems are recovering from the COVID-19 pandemic, the emphasis should be on restoring access to BC care and improving the quality of BC care, with a particular consideration given to those women from low-SES, to reduce health inequalities post-pandemic.

Odevixibat (Bylvay)

CADTH reimbursement reviews are comprehensive assessments of the clinical effectiveness and cost-effectiveness, as well as patient and clinician perspectives, of a drug or drug class. The assessments inform non-binding recommendations that help guide the reimbursement decisions of Canada's federal, provincial, and territorial governments, with the exception of Quebec. This review assesses odevixibat (Bylvay) 200 mcg, 400 mcg, 600 mcg, 1,200 mcg capsules. Indication: For the treatment of pruritus in patients aged 6 months or older with progressive familial intrahepatic cholestasis.

Child-Patient Perspective on Results After Correction of Sagittal Synostosis and the Difference Between Child-Patient and Parent's Perspectives.

This study assesses the level of child-patient satisfaction with the surgical result after scaphocephaly correction and the difference between child-patient and parents' perspectives. A questionnaire was sent out to children between 6 and 18 years old with isolated sagittal synostosis, who had undergone either a frontobiparietal remodeling or extended strip craniotomy, and separately to their parents. The questionnaire was completed by 96 patients, 81.2% of the patients considered their head to be similar or slightly different from others. Despite the majority being satisfied with the outcome, 33% would change the shape of their head if they could. Patients who underwent extended strip craniotomy wanted to change the back of their head more often (P = 0.002), whereas patients who underwent frontobiparietal remodeling wanted to change their forehead (P = 0.005). The patients' own perspective on head shape was independent of the cephalic index (CI). However, patients with a relatively narrow CI received more remarks from others about their heads (P = 0.038). Parent and child agreement was 49.7% on average. Differences between child-patients and parents were found in reporting adaptive behavior. The majority of patients were satisfied with the outcome of their intervention. The child's perspective seems to be a valuable addition to evaluate sagittal synostosis surgery as it is independent of the CI and differentiates between different surgical techniques. In addition, the patient's perspective is comparable to the parent's perspective, but gives more details on adaptive behavior.

The patient's perspective on participation in a multidisciplinary team meeting: A phenomenological study.

In mental health care settings, inpatients are increasingly engaged in their care process, allowing them to participate in multidisciplinary team meetings. Research into how mental health patients (MHPs) experience participating in such meetings is, however, limited. This study aimed to explore inpatients' experiences when participating in multidisciplinary team meetings in a Belgian inpatient mental health unit. This study used a phenomenological design with data collection including semistructured interviews. Twelve individuals participated in the study. Participants were MHPs admitted to a mental health unit that works according to the model of recovery-oriented mental health practice. Findings were analysed utilising thematic analysis. Results showed that the MHPs' experiences were mainly positive but intense. Themes included: 'Feeling honoured to be invited', 'Sense of obligation', 'Feeling nervous', 'Transparency in team members' insights', 'Feeling supported by the (primary) nurse' and 'Duality about the presence of relatives'. By taking these findings into account, (mental) healthcare workers gain insight into the patient's lived experiences, allowing them to provide more person-centred care when inpatients participate in multidisciplinary team meetings. Moreover, these findings can support mental health units in implementing or optimising patient participation in multidisciplinary team meetings. Finally, other (mental health) patients can also benefit from these findings as it can help them to put feelings and thoughts into perspective when participating in a multidisciplinary team meeting during a hospital admittance.

Barriers and facilitators to satisfaction with diabetes care: The perspectives of patients attending public diabetic clinics in Dar es Salaam, Tanzania

Background The prevalence of diabetes has been increasing steadily over the past decade in low- and middle-income countries (LMICs) with about three-quarters of people living with the disease globally residing in these countries. Patient satisfaction can be used as a proxy measure of overall facility performance, and its use has been recommended for determining the quality of services provided by healthcare centres and organizations. This study aimed to explore barriers and facilitators towards satisfaction with diabetes care among patients attending public diabetic clinics in Dar es Salaam, Tanzania. Methods A qualitative descriptive study was carried out among people with diabetes attending public diabetic clinics in Dar es Salaam, Tanzania. Using a purposeful sampling technique, 35 people with diabetes were interviewed from May 2023 to July 2023 with the principles of saturation guiding sample size determination. A semi-structured face-to-face interview guide was employed in data collection. The audio-recorded interviews were transcribed and analyzed using a conventional content analysis approach after translation. NVivo 12.0 computer software was employed to organize and code the data. Results A total of 35 participants were enrolled in this study with a mean (±SD) age of 58.5 (±13.76) years. Four predominant themes and 12 categories were identified after data analysis including two barriers and two facilitators toward patients’ satisfaction with diabetes care. Financial constraints and unfavourable clinic environments were identified as barriers. Furthermore, good provider-patient relationships and continuity of care emerged as facilitators. Conclusion Barriers and facilitators to patients’ satisfaction with diabetes identified in this study are greatly determined by socio-economic and cultural conditions, highlighting the role of the healthcare delivery systems and allied stakeholders in regulatory and policy development to address the existing barriers and consolidate the proven facilitators.