Study-specific Questionnaire Research Articles

Health-related quality of life following cranioplasty: a cross-sectional cohort study – Cranio-PRO

Cranioplasty is an operation that aims to repair a defect in the skull. Indications commonly include Traumatic Brain Injury (TBI), tumours, and infections. It carries a high rate of postoperative morbidity. Due to underlying pathology and the nature of the operation patients’ Health-related Quality of life (QoL) can be severely affected. Patient reported outcomes (PROs) are poorly understood following cranioplasty. To investigate PROs following cranioplasty a cross-sectional cohort study of adults undergoing cranioplasty between 01/03/2010–30/08/2020 was conducted. If consent was provided, participants were sent five health reporting questionnaires: a study specific questionnaire, EuroQoL – 5D – 5L (EQ-5D-5L), RAND Short-Form 36 (SF-36), Hospital Anxiety and Depression Scale (HADS), and Derriford Appearance Scale (DAS-24). 239 eligible patients were contacted and 72 (30.8%) participated. Median [Range] age was 52.5 [23 – 95] of which 59.7% (n= 43) were male. 16.9% (n = 12) were categorised with borderline and 29.0% (n = 20) with extreme depression, 15.9% (n = 11) reported borderline and 35.2% (n = 25) extreme anxiety. 69.1% (n = 47) had problems with usual activities and 71.6% (n = 49) suffered from pain/discomfort. Median (Range) EQ-5D-5L visual analogue scale score for overall health was 70.0 (5–100). 76.0% (n = 53) reported feeling conscious or having negative feelings towards their appearance. When compared to normative UK population, physical functioning, overall health, and energy/fatigue were the most affected. After cranioplasty, patients may have reduced HRQoL. Signposting and referral to well-being services could benefit patients’ care. Adequately powered longitudinal studies are required to further elucidate change in PROs following cranioplasty.

Mobile-based peer-led theoretically-designed intervention on continued breastfeeding among Iranian mothers

BackgroundThis study addresses the determination of educational intervention—based on the Theory of Planned Behavior (TPB)—effectiveness on continued breastfeeding among Iranian mothers attending health centers, considering low researchers’ attention to the continued breastfeeding index despite its important impact on children’s health.MethodsThe present study was conducted among 230 mothers with exclusively breastfed infant (115 in the intervention group and 115 in the control group). Sampling starts with randomly selecting 12 health centers among all health centers in Karaj, Alborz province, and allocating them randomly into two equal groups of intervention and control. A study-specific questionnaire, designed in alignment with TPB, was the primary data collection tool. The intervention group received peer education, and optional additional education through a social network. Data were collected in 4 stages, including before the intervention, immediately, 3 months, and 6 months after the intervention. Data were analyzed using SPSS-16 and Independent t-test, Chi-square RMANOVA, ANCOVA, Cochran and McNemar tests.ResultsThere was a significant increase in the mean scores of attitude, subjective norms and perceived behavioral control constructs in the intervention group and a significant decrease of those constructs was observed in the control group (p < 0.05). There was an improvement in the mean score of breastfeeding continuation behavior among intervention group mothers after intervention exposure but it was not significant (p > 0.05). There was also a significant decrease in breastfeeding and an increase in the usage of powdered milk in mothers of the control group (p < 0.05).ConclusionIt was concluded that educational interventions based on TPB by using peer group and social network can promote the behavior of continued breastfeeding. This theoretical framework can act as a road map for future development of educational interventions targeting breastfeeding continuation.

Health literacy in parents of children with Hirschsprung disease: a novel study

PurposeTo explore health literacy (HL) among parents of children with Hirschsprung disease (HD).MethodsNorwegian-speaking parents of children under 16 who underwent HD surgery at a tertiary center were surveyed using the Health Literacy Questionnaire-Parent, electronic Health Literacy Scale, General Self-efficacy Scale, and a study-specific questionnaire. Demographics were collected and ethical approval was obtained.ResultsAmong 132 parents (77 mothers) of 91 children (median age 8 years), high HL scores appeared in the domains “understanding health information” and “active engagement”, with lower scores in “provider support”, “health information appraisal”, and “social support”. Higher HL correlated with parents aged over 40 and higher education. Lower scores were seen with non-exclusive Norwegian use at home and not living with the child’s other parent. High electronic HL scores were common (mean 3.6, maximum score 5). 69% had high self-efficacy scores (score > 2, maximum score 4). Self-efficacy correlated strongly with higher HL scores.ConclusionParents of children with HD feel healthcare providers lack understanding of their child’s challenges, experience limited social support and struggle with interpreting health information. We suggest targeted HL interventions for young, lower-educated, non-cohabitating parents and those not primarily speaking the official language at home.Graphical abstract

Impact of bladder management methods and other factors on sexual activity in women with chronic spinal cord injury/disease.

Spinal cord injury/disease (SCI/D) profoundly affects both sexuality and urinary function. Catheterization is often necessary to manage bladder voiding and it can interfere with sexual activity. We aim to investigate the effect of the bladder evacuation method on sexual activity in women with chronic SCI/D. This cross-sectional study at a specialized SCI/D rehabilitation center recruited women ≥18years with chronic SCI/D using intermittent or suprapubic catheterization. We assessed sexual activity and sexual function with the German version of the Sexual Behaviour Questionnaire and the Female Sexual Function Index (FSFI) and a study-specific questionnaire. The primary outcome was sexual activity and secondary outcomes included factors influencing sexual activity, such as age and SCI/D characteristics. Around half of the evaluated women were sexually active, regardless of bladder evacuation method. However, significantly (P = .018) more women using intermittent catheterization (IC) (66.7%, 20/30) were sexually active compared to those with a suprapubic catheter (SPC) (29.4%, 5/17). The main concern for women using IC was urinary incontinence during sex (43.3%, 13/30), while those with a SPC struggled with self-image due to the catheter (58.8%, 10/17). Not having a partner was the most common reason for sexual inactivity in both groups (59.1%). The median FSFI total score was significantly (P = .049) greater in the IC group (median 26.4, lower quartiles [LQ] 8.9/upper quartiles [UQ] 28.8) compared to the SPC group (median 11.5, LQ 5.4/UQ 25.5), which represents a lower grade of sexual dysfunction in women using IC. Sexual education is crucial and should be adapted to the different types of bladder management. This study shows first data on the effect of catheter on sexual activity in women. Limitation of our study is the small sample size and response bias by the high rejection rate of women with SPC. Few women with SPC remain sexually active after SCI/D, while the majority of women using IC do, highlighting issues around self-image and urinary incontinence.

MELACARE Nurse-led follow-up after early-stage melanoma: protocol and feasibility.

We developed the Melacare nurse-led intervention, which combines education in skin self-examination as a resource-conscious approach to detecting recurrence and management of fear of cancer recurrence in patients treated for melanoma. This publication presents the Melacare study protocol and evaluates the feasibility and acceptability of Melacare prior to a larger randomised controlled trial. Feasibility and acceptability of Melacare were evaluated in an intervention-only feasibility study, in which patients attended two nurse-led intervention sessions coupled with an educational booklet. Participants completed patient-reported outcome (PRO) questionnaires at baseline and before each session. After the intervention, participants completed a study-specific feedback questionnaire. Feasibility was evaluated in terms of recruitment, adherence, and attendance. Self-reported outcomes from the study-specific questionnaire on intervention effects were also collected. Results of the feasibility study: Fourteen patients (nine stage IA, five stage IB melanoma) participated. Attendance and recruitment rates were 100%, all participants completed the baseline and PRO questionnaires, and 100% read at least half of the educational booklet. In terms of intervention effects, all patients reported improved knowledge of performing skin self-examination and coping with the fear of cancer recurrence. Results indicate that the Melacare nurse-led intervention is highly feasible and acceptable for use with patients treated for early-stage melanoma. Prior to clinical trial commencement, minor refinements include changing the method of recruiting by telephone and offering.

Has Supervision and Training in CAMHS Ireland Improved Following the Maskey Report?

Introduction: A look back review of South Kerry CAMHS in Ireland, known as the ‘Maskey report’ (MR) highlighted several key contributory factors including an absence of formal supervision, inadequate prescribing knowledge, and a lack of contractual requirements to engage in professional education to develop skills pertaining to child psychiatry.Aim: To investigate child and adolescent psychiatrists’ perceptions concerning supervision levels before and after the MR, their prescribing knowledge and practices, and professional education. Methods: The study utilized a cross-sectional, mixed-methods observational approach, distributing a study-specific questionnaire electronically to 160 CAP. Demographic details and participants’ perspectives on training, supervision, and CPD activities were collected. Statistical analysis, including chi-square tests, was conducted to explore associations with thematic analysis applied to free text responses for qualitative insights. Results: From the 160 eligible respondents, 102 child and adolescent psychiatrists participated in the study giving a response rate of 63.8%. More than a third of non-consultant hospital doctors (NCHDs) reported less than weekly supervision (n = 11, 34.4%). Fifty-two respondents (51.0%) felt that psychotropic medication training for trainees was below adequate, and this was higher in NCHDs (χ2 (2, n = 102) = 12.192, p = .002) and in those working in public settings (χ2 (2, n = 102) = 10.098, p = .006). A third of respondents reported access to CPD activity as inadequate (n = 32, 31.4%) and this was also higher in NCHDs (χ² (1, n = 102) = 7.515, p = 0.006). Discussion: Given the suboptimal frequency of supervision, perceived inadequacy of psychotropic medication training and lack of access to CPD activities, further research to establish effective strategies for enhancing supervision and training of child and adolescent psychiatrists is warranted.

User perceptions of aspects related to the use of the activity chair: A descriptive cross-sectional study

Introduction: Little is known about the use and aspects impacting the use of the activity chair, which is a device supporting seated activities in everyday life. The aim was to understand (a) purpose of provision, (b) frequency and magnitude of use, (c) barriers impacting use, (d) instruction provided and (e) overall satisfaction with the activity chair. Method: This is a cross-sectional study involving 141 adult activity chair users. Data were collected through telephone interviews using a study-specific questionnaire with 21 items. Descriptive statistics were used to summarise the quantitative results, and data-driven text analysis was conducted to analyse open-ended question responses. Results: Most respondents (87%) were provided the activity chair for kitchen work, 87% used the device on a daily basis, 75% used the device for additional activities beyond the provision purpose, 65% experienced barriers impacting use, instructions varied, with 28% receiving none and 16% had received activity-based training, 85% were satisfied with the activity chair. Conclusion: The activity chair appears to be regularly utilised and appreciated by respondents. However, improved device provision, particularly concerning activity-based training in relevant context and systematic follow up, may be required to reduce barriers impacting use. Findings emphasise the importance of learning from users.

How Do Surgical Interventions for Neurogenic Lower Urinary Tract Dysfunction Impact Quality of Life?

Adult patients with neurogenic lower urinary tract dysfunction (NLUTD) often have urinary symptoms that impact their quality of life (QOL). Our objective is to identify and summarize studies evaluating QOL changes across different NLUTD surgical interventions. A systematic rapid evidence review was carried using EMBASE and MEDLINE. We included adult patients (> 18 years old) with NLUTD who underwent a relevant surgery and had a measurement of QOL. We included pre-post study designs (primary focus) and cross-sectional studies (secondary focus). Studies were reviewed and data extracted by multiple assessors. Standardized data extraction tables were used, and qualitative synthesis was performed. Of the 1074 screened articles 26 were included. There were 3/15 studies that evaluated reconstructive surgery (augmentation and/or catheterisable channel) pre-post intervention (n = 94 patients); there was a 7%-28% relative improvement in bladder related and overall QOL using validated questionnaires, and a large magnitude of improvement in studies using unvalidated questionnaires. There were 3/7 studies that looked at urinary diversion pre-post intervention (n = 153 patients) and showed an approximately 20%-60% improvement in validated questionnaires assessing bladder specific quality of life, and 0%-25% improvement in overall quality of life. Finally, 3/4 studies were pre-post stress incontinence surgeries (n = 67 patients) and they found an improvement in the ICIQ questionnaire scores and study-specific questionnaires. The literature supporting a change in QOL in adult NLUTD patients undergoing surgical interventions is extremely limited due to a lack of pre-post studies, and the frequent use of unvalidated outcome measures.

Reasons for reduced reproduction after colectomy in women with ulcerative colitis

Objectives Colectomy and subsequent bowel reconstruction in women with ulcerative colitis (UC) is associated with decreased fertility, this survey aims to investigate possible reasons for this. Material and methods Women with UC aged 18–44 years at colectomy 2000–2020 were identified and data were retrieved from the Swedish inflammatory bowel disease register (SWIBREG). Additional information was obtained using a study-specific questionnaire. Results The survey was completed by 214 (72.8%) out of 294 eligible women. Mean age at disease onset was 22.9 years (standard deviation 0.5). No reconstruction was made in 67 (31.3%) women, whereof 24 (35.8%) had a completion proctectomy. Reconstruction was performed with ileorectal anastomosis (IRA) in 66 (30.8%) women and ileal pouch anal anastomosis (IPAA) in 81 (37.9%). Included women had on average 1.67 children (95% confidence interval 1.53–1.81) at the end of follow-up. The desire to have children was negatively affected by disease onset (59.4%), colectomy (44.9%) and reconstruction (36.7%). Altogether, 39.4% estimated that they had fewer children and 9.5% restrained completely from having children because of the disease. Difficulties to conceive were reported by 36.5% including 18.9% who expressed that they could not conceive at all. Difficulties to conceive was more common after reconstruction with IPAA (Odds Ratio [OR] 5.54) than IRA (OR 2.57). Conclusions A majority of women with UC and colectomy expressed that the disease affected their desire to have children, more often limiting the number of children than completely refraining. For childless patients, difficulties to conceive was more common than voluntary childlessness.

Healthcare professionals' experiences of the usefulness and ease of using a digital medical translation tool in communicating with minority language-speaking hospitalized heart surgery patients

Abstract Background/Introduction Healthcare professionals are required to deliver high-quality care while adhering to the human right to equity for all patients. Language barriers often result in miscommunication between healthcare professionals and patients, leading to decreased patient satisfaction, compromised patient safety (such as increased adverse events), and diminished healthcare quality. Studies focusing on implementing digital medical translation tools and measuring their usefulness during patients’ hospitalization are highly warranted. Purpose To survey and explore healthcare professionals' experiences of the usefulness and ease of using a digital medical translation tool in communicating with minority language-speaking heart surgery patients during hospitalization. Methods Participants completed an internationally published six-item, study-specific questionnaire on health care professionals' experiences regarding perceived usefulness and ease of use from October 2022 to February 2023. The first three items, namely: (1) 'The digital tool was easy to use,' (2) 'The languages were easy to understand,' and (3) 'The digital tool was useful,' were measured on a 5-point Likert scale ranging from 1 ('totally agree') to 5 ('totally disagree'). The last three items were open-ended: (4) 'What they liked best,' (5) 'What they liked the least,' and (6) 'Suggestions for improvement'. Results Health care professionals (i.e., registered nurses, intensive care nurses, operating room nurses, anaesthesia nurses and physiotherapists) (n=53) aged, mean 35 (SD, min-max 9.7, 25-58). They reported the digital medical translation tool was easy to use ("totally agree/agree" 15/33, 91%), easy to understand ("totally agree/agree" 30/22, 97%), and useful ("totally agree/agree" 24/25, 92%) as illustrated in figure 1. Illustrative citations from the open responses: What health care professionals liked best: "Enabling communication with minority language-speaking patients feels safe in terms of patient safety" and "The opportunity to form a clinical picture of the patient at the beginning of the shift gives me confidence. The possibility to meet the patient's psychosocial needs and the opportunity to more easily clarify situations and pains and discomforts." They liked the least that it "Took some time to find my way around between questions at the beginning of using the tool" and suggestions for improvement were cited as "Split up the phrases in the tool in several categories (icons) e.g., intubation phase" and "Add more phrases specific for our heart surgery patients". Conclusions Healthcare professionals found a digital medical translation tool to be useful and easy to use in meeting the needs of patients and improving patient safety during communication with minority-speaking heart surgery patients.

Prevalence and Risk Factors of Psychological Distress in Patients With Early-Stage Lung Cancer During Preoperative Period: A Cross-Sectional Study.

This study aims to investigate the prevalence of significant psychological distress and identify risk factors associated with it among early-stage lung cancer patients in the preoperative period. Lung cancer is a major cause of cancer deaths worldwide, with low survival rates and significant psychological distress. While much research has focused on distress in advanced-stage patients, less is known about the prevalence and risk factors of psychological distress in early-stage lung cancer patients before surgery. A cross-sectional study. The study included 427 early-stage lung cancer patients preparing for surgery. Researchers used a study-specific questionnaire to gather general information and employed the Distress Management Screening Measurement, Patient Health Questionnaire-9 and Generalised Anxiety Disorder-7 to assess personal situations and psychological distress levels. Statistical analyses investigated distress across various patient characteristics and examined correlations with anxiety and depression. Binary logistic regression identified significant predictors of psychological distress. The study found that 41.9% of early-stage lung cancer patients experienced significant psychological distress preoperatively, with an average score of 3.31 ± 2.18. Psychological distress was significantly positively correlated with depression (r = 0.474, p < 0.001) and anxiety (r = 0.591, p < 0.001). Significant risk factors for psychological distress included pulmonary nodules (OR = 2.884, 95% CI: 1.496-5.559), smoking history (OR = 2.092, 95% CI: 1.016-4.306) and chronic diseases (OR = 2.013, 95% CI: 1.073-3.776). Early-stage lung cancer patients often experience a high incidence of clinically significant psychological distress during the preoperative period, strongly associated with depression and anxiety. Adverse factors contributing to psychological distress include multiple indeterminate pulmonary nodules, smoking history and concurrent chronic diseases. Routine screening for psychological distress in these patients is recommended, along with personalised interventions and self-management strategies to help alleviate their distress during the perioperative period.

Self-care strategies used by disaster responders after the 2023 earthquake in Turkey and Syria: a mixed methods study

BackgroundDisaster responders are exposed to several physical and mental health risks. This study aimed to describe self-care strategies used by disaster responders after the earthquake in Syria and eastern Turkey in February 2023.MethodsA study specific web-based questionnaire survey was used to collect quantitative and qualitative data according to a convergent mixed methods approach. Data from 252 disaster responders responding to the earthquakes in Turkey and Syria were analyzed using both descriptive and analytical statistics and summative content analysis of free-text answers. Data were collected in March to July, 2023.ResultsThe most used self-care strategies included resting, social support from colleagues in the field, extra intake of food or drink, and intake of medicines. The recovery strategies varied due to previous disaster response experience, indicating that supportive self-care strategies can be developed or learned.ConclusionGiven the extreme conditions and limited possibilities of external support, sufficient self-care is an essential competence among disaster responders. Self-care strategies can be both external processed such as intake of medicines, social support from others, and internal processes such as personal reflection. Providing oneself with self-care activities seems to be a skill developed with increasing experience supported by pre-deployment training. Therefore, to enhance resilience, self-care strategies should be encompassed in pre-disaster response training.

Rehabilitation, Decision Making, and Return to Pivoting Sports in Athletes 1-3 Years After ACL Reconstruction: A Nationwide Study

OBJECTIVE: To describe rehabilitation and decision making from anterior cruciate ligament (ACL) reconstruction to return to sport (RTS), characteristics, and RTS proportions for pivoting sport athletes undergoing usual care. DESIGN: Cross-sectional study. METHODS: We invited people with ACL reconstruction (ACLR) aged 16-40 years, who were injured during soccer, handball, or basketball and registered in the Norwegian Knee Ligament Register to complete a study-specific questionnaire at 1-3 years post-surgery. We reported descriptive statistics and RTS proportions for return to participation, sport, and performance. RESULTS: Of 1 875 individuals, 631 (34%) responded. The physical therapist–led rehabilitation ceased before 9 months in 52% (n = 268), and a physical therapist was most frequently involved in RTS decisions (n = 462, 77%). Fifty-five percent (n = 353) of the participants underwent physical testing prior to RTS. At a mean of 2.3 years (SD = 0.8) after ACLR, 62% (n = 391) returned to participation, 50% (n = 312) returned to sport, and 17% (n = 93) returned to preinjury performance, with higher rates for those under 20 years old. The main reasons for nonreturn were fear of reinjury (35%, n = 27) and knee problems (35%, n = 27). Median time to RTS was 12 months (interquartile range, 10-15 months), and 16% (n = 102) had sustained a new ACL injury at follow-up. CONCLUSION: This nationwide study found that half of pivoting sport athletes ceased rehabilitation within 9 months and half performed physical testing to inform RTS, with physical therapists most frequently involved in the RTS decision. Half of the athletes returned to sport, and 1 in 6 returned to performance. RTS proportions were highest in athletes younger than 20 years. JOSPT Open 2025;3(1):45-58. Epub 10 September 2024. doi:10.2519/josptopen.2024.0087

Mixed-Method Evaluation to Understand Clinician Perspectives of a Program to Implement High-Intensity Resistance Rehabilitation Into Skilled Nursing Facilities

ObjectiveTo assess rehabilitation clinicians’ viewpoints regarding a multicomponent implementation program aimed at promoting high-intensity resistance rehabilitation (HIR), as well as practical implications for its use in skilled nursing facility (SNF) rehabilitation. DesignProspective convergent mixed-method design. SettingEight rural SNFs within the Department of Veterans Affairs. ParticipantsPhysical rehabilitation clinicians (physical and occupational therapists, physical and occupational therapy assistants, recreational therapists, and kinesiotherapists) who engaged with the implementation program (n=38). InterventionsClinicians engaged with the multicomponent implementation program to promote the use of HIR in clinical practice. The program components included clinician training (i.e., virtual didactic modules with synchronous case discussions), provision of resources (e.g., equipment, job aids), and facilitated implementation (e.g., external implementation facilitator support, distributed tips and tricks). Main Outcome MeasuresAcceptability of Intervention Measure, Training Acceptability Rating Scale, study-specific questionnaires, and qualitative focus groups exploring perceived acceptability, feasibility, and effect on work experience. ResultsQuestionnaires revealed high levels of implementation program acceptability and perceived effect, alongside moderate levels of feasibility. Focus group themes supported these findings, explaining high acceptability and effect through differentiation from other trainings and prolonged engagement. Feasibility results were explained qualitatively by facilitatory factors (i.e., team participation, reduced caseloads, training characteristics) and inhibitory factors (i.e., training timing, self-paced scheduling logistics, lack of protected time and space). There was no reported negative effect on clinician work experience. ConclusionsAccording to SNF clinician perspectives, a positive HIR implementation experience may be enhanced through implementation programs that provide prolonged engagement and a self-paced structure with built-in accountability. Leadership and organizational support appear important to protect time and space for clinicians who experience competing priorities to successfully facilitate evidence uptake. Future work can evaluate the applicability across various contexts beyond rural VA SNFs.

“Gastrointestinal Quality of Life After Congenital Duodenal Obstruction Repair: A Nationwide Long-term Follow-up Study”

BackgroundCongenital duodenal obstruction (CDO) is one of the most common gastrointestinal congenital anomalies. Still, patient-reported long-term results are limited. The aims of this study were to evaluate the long-term gastrointestinal quality of life (QoL), generic QoL, patient-reported scar appearance, and reinterventions after CDO repair. MethodsPatients who underwent surgery for CDO in Norway from 1995 to 2020 were invited to answer the validated questionnaires PedsQL and PedsQL gastrointestinal symptom scale and a study-specific questionnaire on general health and scar assessment. Parent-proxy reports were used for patients <12 years and patients with cognitive impairment. Scores were compared with an American and Norwegian control group for gastrointestinal and generic QoL, respectively. ResultsOf 186 eligible patients, eight were deceased, 25 had unretrievable contact information, and 79 did not respond. There were no significant differences between included (n = 74) and not included (n = 112) patients regarding baseline data. The mean follow-up time was 13.3 (SD = 6.6) years. Patients with CDO had significantly lower overall gastrointestinal QoL than controls (85.9 versus 90.0, p = 0.010). The most common symptoms were gas/bloating, constipation, food/drink limits, and reflux. Generic QoL was similar between the CDO population and controls (84.4 versus 85.3, p = 0.530). Twenty-one (28 %) patients had some degree of pain and/or concern related to the surgical scar. Nine (12 %) patients had reoperations related to the CDO repair; four due to adhesive small bowel obstruction. ConclusionA notable portion of patients report troublesome gastrointestinal symptoms and cosmetic concerns regarding their surgical scar after CDO repair. Even so, generic QoL was good. Level of evidenceIV.

Benefits of a Juvenile Arthritis Support Program (JASP-1) for children recently diagnosed with Juvenile Idiopathic Arthritis and their parents

BackgroundMedical treatment for children with Juvenile Idiopathic Arthritis (JIA) has improved radically since the development of biological disease-modifying antirheumatic drugs. However, children suffer from pain and anxiety, and parents often experience loneliness and lack of support. Some parents reported that information provided at the time their child was diagnosed could be difficult to assimilate. Therefore, the aim of this study was to develop a Juvenile Arthritis Support Program (JASP-1) for children recently diagnosed with JIA and their parents. Moreover, the aim was to explore patients´ and parents´ experiences with JASP-1 and its potential impact on patients´ physical health.MethodsJASP-1 included seven patient- and family-centered clinical visit from time of diagnose and one year ahead. Data were collected from a study-specific questionnaire answered by children and their parents after participation in JASP-1 and from the pediatric rheumatology register. The study-specific questionnaire explored participants´ experience with the care they received during their first year with JIA. Registry and questionnaire data from the intervention (JASP-1) group was compared to a control group.ResultsThe analysis revealed that children and parents who completed JASP-1 were more satisfied with the care they had received during their first year with JIA than the control group. The results also showed that children who completed JASP-1 were assessed as having better overall health after 12 months, than children in the control group (JASP-1 = mean 4.33, 95% Confidence Interval (CI) 4.17 − 4.46), (Control = mean 3.68, 95% CI 3.29 − 4.06), (p = 0.002). Moreover, children in the JASP-1 group had less disease impact on daily life (JASP-1 = mean 0.15, 95% CI 0.07 − 0.24) (Control = mean 0.40, 95% CI 0.13 − 0.67), (p = 0.017) and less active joints than the control group (JASP-1 = mean 0.62, 95% CI 0.35 − 1.58), (Control = mean 0.87, 95% CI 0.18 − 1.56), (p = 0.054).ConclusionA support program like JASP-1 could be an effective way of not only supporting children newly diagnosed with JIA and their parents psychologically but may also increase children’s overall physical health and improve quality of care within pediatric rheumatology.Trial registrationRetrospectively registered in ClinicalTrials.gov, the 13th of February with ID NCT06284616.

DIEP backlog: Mission impossible?

The outbreak of the coronavirus disease 2019 (COVID-19) pandemic caused global challenges, including the restriction of surgical options for women with breast cancer. Autologous reconstruction availability has still not returned to pre-COVID-19 levels. This study aimed to collect data about waiting lists for autologous breast reconstruction and is the first of its kind. A total of 31 units were approached and asked to complete a study specific questionnaire. In total, there are at least 2255 patients on a waiting list, which equates to a 2-year and 5-month backlog at the current level of provision, without the inclusion of new referrals. Alarmingly, 40 women reportedly developed breast cancer whilst on the waiting list. The impact of COVID-19 has been significant, revealing national inequity in reconstruction provision and long waiting lists. Recommendations include increasing theatre capacity, optimising plastic surgeons' job plans to prevent waiting lists from growing as well as training more surgeons in autologous reconstruction.

Implementing injury prevention training in youth handball (I-PROTECT) in Sweden: study protocol for a cluster randomised trial

IntroductionEfficacy trials show that evidence-based injury prevention training reduces injuries in youth athletes but effectiveness, that is, outside the controlled setting, is lower and, consequently this training has had limited...

Improving patient understanding of GEP test results (IMPARTER4): An RCT.

527 Background: We developed two 8 min films to aid patients’ understanding about gene expression profiling (GEP) tests (Oncotype DX or Prosigna) in breast cancer. A previous study of 120 women without breast cancer demonstrated significantly better knowledge after film viewing compared to that after reading written materials (1). We present results of an RCT testing the films’ utility when given in clinics to women with early HR+ breast cancer for whom the benefit of chemotherapy was uncertain. Methods: Standard information policies about GEP testing differ, some clinics may provide patients with leaflets, others only verbal information. Patients who had consented to a GEP test were invited to join IMPARTER4. At baseline they completed anxiety trait/state and intolerance of uncertainty (IoU) questionnaires and were then randomized to Gp A (hospitals’ standard information alone) or Gp B (standard information plus the relevant GEP patient film). Prior to learning their risk of recurrence scores, researchers interviewed patients and probed their understanding and knowledge about GEP testing together with the role risk scores had in helping determine management options (hormone therapy plus or minus chemotherapy). Following test result discussions with oncologists, patients completed two further questionnaires measuring anxiety and decisional conflict. Treating physicians all completed IoU questionnaires once at baseline, Satisfaction with their clinical interviews conducted with patients about risk scores and management decisions was measured using a study specific questionnaire. Results: To date 225/230 patients from 18 UK hospitals (Gp A (standard information alone) n=103; Gp B (standard plus information film) n=122) were seen by 79 physicians. Socio-demographics, anxiety trait/state and IoU did not differ between groups. Prior to the results discussion, written information was given to 128/225 (56.9%), (66 in Gp A, and 62 in Gp B). Linear regression analyses (adjusted for age and education) showed that mean knowledge scores were higher in those receiving standard information plus the film (Gp B), (2.5 points (95% C.I:1.7-3.4) p&lt;0.001). There was a trend for longer consultations in those patients having standard information alone (Gp A) (12.6% v 8.2%), who also asked more difficult questions (9.7% v 2.5%). Conclusions: Patient information films significantly improved knowledge about GEP tests and recurrence risk results compared to standard verbal and written information alone. Furthermore, the films appeared to enable shorter, more informed discussions between patients and their oncologists about the addition of chemotherapy to hormone therapy alone. Versions in Spanish, Italian, French, Urdu, Hindi, Gujarati, Punjabi, and Bengali are freely available. 1. Fallowfield et al, Br Ca Res &amp; Tmt. 2022. Clinical trial information: 28497350.

Impact of a national audit on child and adolescent psychiatrists' prescribing practices.

A look back review of South Kerry Child and Adolescent Mental Health Services (CAMHS) in Ireland, known as the 'Maskey report' (MR), highlighted substandard prescribing practices. The aim of this 'Maskey Impact Study' (MIS) was to explore changes to child and adolescent psychiatrists' prescribing practices following the MR. The study was cross-sectional and mixed method. A study specific questionnaire was distributed electronically to psychiatrists working in CAMHS (n = 160). 102 psychiatrists participated in the study (response rate 63.8%). Perceived improvement in prescribing practices included improved medical record keeping (63.7%), consent documentation (53.9%), medication information provision (41.2%) and physical health monitoring (60.8%). However, 43.1% of psychiatrists reported a reluctance to prescribe medication even when clinically indicated and 50% were more likely to avoid off-label use. Most respondents reported increased stress levels (80.4%) with higher stress being significantly associated with reticence in prescribing (χ2 = 11.746, p < .001) and avoiding off-label use (χ2 = 15.392, p < 0.001). Thematic analysis highlighted increased medication hesitancy, enforced 'meaningless' bureaucracy and medication mistrust among families. Although improvements reported are welcomed, the increased hesitancy of medication use, avoidance of prescribing more than one medication, and avoidance of off-label use, is of concern with potential unintended adverse consequences. Reluctance in prescribing may deprive youth of access to evidence-based treatments and limit exposure of NCHDs to the safe practice of consultant-initiated psychopharmacology. Further research will be important to determine if this impacts clinical care. Continued education in psychopharmacology is essential along with increased public awareness of the evidence for medication, to help restore public confidence and trust in psychopharmacology.