Delineating family needs in the transition from hospital to home for children with medical complexity: part 1, a meta-aggregation of qualitative studies.

BACKGROUND: Advances in diagnostic and therapeutic interventions for rare diseases result in greater survival rates, with on the flipside an expanding group of children with medical complexity (CMC). When CMC leave the protective hospital environment to be cared for at home, their parents face many challenges as they take on a new role, that of caregiver rather than care-recipient. However, an overview of needs and experiences of parents of CMC during transition from hospital-to-home (H2H) is lacking, which hampers the creation of a tailored H2H care pathway. Here we address this unmet medical need by performing a literature review to systematically identify, assess and synthesize all existing qualitative evidence on H2H transition needs of CMC parents. METHODS: An extensive search in Medline, PsychINFO and CINAHL (up to September 2022); selection was performed to include all qualitative studies describing parental needs and experiences during H2H transition of CMC. All papers were assessed by two independent investigators for methodological quality before data (study findings) were extracted and pooled. A meta-aggregation method categorized the study findings into categories and formulated overarching synthesized findings, which were assigned a level of confidence, following the ConQual approach. RESULTS: The search yielded 1880 papers of which 25 met eligible criteria. A total of 402 study findings were extracted from the included studies and subsequently aggregated into 50 categories and 9 synthesized findings: (1) parental empowerment: shifting from care recipient to caregiver (2) coordination of care (3) communication and information (4) training skills (5) preparation for discharge (6) access to resources and support system (7) emotional experiences: fatigue, fear, isolation and guilt (8) parent-professional relationship (9) changing perspective: finding new routines and practices. The overall ConQual Score was low for 7 synthesized findings and very low for 2 synthesized findings. CONCLUSIONS: Despite the variability in CMC symptoms and underlying (rare disease) diagnoses, overarching themes in parental needs during H2H transition emerged. We will augment this new knowledge with an interview study in the Dutch setting to ultimately translate into an evidence-based tailored care pathway for implementation by our interdisciplinary team in the newly established 'Jeroen Pit Huis', an innovative care unit which aims for a safe and sustainable H2H transition for CMC and their families.

A historic cohort study of nutritional status related side effects and weight loss of cancer patients treated with immunotherapy.

BACKGROUND AND AIMS: Recently, there has been an increase in the number of patients treated with immunotherapy. However, the number of studies investigating combination immunotherapies is still limited, resulting in a gap of knowledge regarding the incidence of nutritional side effects, differences in the durations of these side effects, and differences in weight loss between patients undergoing single and combination immunotherapies. METHODS: In this historical cohort study, which was performed from 2017 to 2019, a total of 50 patients who received one type and 50 patients who received two types of immunotherapy were randomly selected, resulting in a sample of 100 patients. The primary objectives were to assess (a) the incidence of nutritional side effects, (b) the differences in the durations of these side effects, and (c) the differences in weight loss between the two groups. The secondary objectives were to assess the time to the first side effect, the time to the first unplanned hospital admission, unplanned hospital admissions, consultations from a dietitian, and nutritional interventions. Data were collected from the electronic patient record. Differences between groups were explored using the two-sample t-test, Mann-Whitney U test, Fisher exact test, or Wilcoxon rank sum test, depending on the type of data and the test assumptions. The time to the first side effect and the time to the first unplanned hospital admission are presented as Kaplan-Meier curves, and differences were calculated using a Cox proportional hazards model. RESULTS: Patients undergoing a combination of two types of immunotherapy were found to have side effects for statistically significantly longer durations than patients receiving one type of immunotherapy (20 days versus 10 days, p = 0.045). Moreover, patients undergoing a combination of two types of immunotherapy were found to lose more weight (6.2 kg versus 1.2 kg, p < 0.001). At least one side effect was reported in 86% of the patients in the one-therapy group and in 90% of the patients in the combination-therapy group. Furthermore, a high incidence of decreased appetite (70% and 86%), nausea (52% and 68%), vomiting (22% and 46%), and diarrhea/colitis (56% and 54%) was found in both groups. However, the time to the first side effect and the time to the first hospital admission were not statistically significantly different between the one-therapy and combination-therapy groups. Of the total cohort, 26% were admitted unexpectedly during the immunotherapy because they developed immunotherapy-related side effects, whereas 38% of the patients in our sample consulted a dietitian. CONCLUSIONS: Nutritional side effects are common in patients treated with immunotherapy. Generally, treatment with a combination of two types of immunotherapy is associated with an increased incidence of nutritional side effects. These side effects last longer and patients lose more weight compared to those receiving one type of immunotherapy.

Is quantitative ultrasound a measure for metabolic bone disease in preterm-born infants? A prospective subcohort study.

In this study, we aimed to (a) evaluate postnatal changes in bone development in relation to growth and (b) to determine factors associated with bone development, from birth to 24 months of corrected age. The metacarpal speed of sound (mcSOS) and metacarpal bone transmission time (mcBTT) were used to evaluate bone development in 98 preterm infants, during hospitalization and follow-up. The mcSOS and mcBTT values not only declined in the first 6 weeks of hospitalization but also during follow-up. The mcSOS reached its lowest point at 12 months (ß=-34.64), while the mcBTT reached a plateau between 12 and 24 months (ß=0.06). Univariable analysis showed that gender (p=0.28), time (p<0.001), and growth parameters (p<0.001) were significant negative associated factors with mcSOS, whereas with mcBTT, time (p=0.009), length (p=0.063), length standard deviation scores (SDS) (p=0.027), head circumference (p=0.005), and head circumference SDS (p=0.007) were significant positive. The multivariable model revealed that time (ß= -3.364, p=<0.001), weight (ß=-0.007, p<0.001) and length (ß=1.163, p<0.001) for mcSOS and length (ß=-0.021, p<0.001), and length SDS (ß= 0.066, p<0.001) and head circumference (ß=0.049, p<0.001) for mcBTT remained highly significant associated factors.Conclusion: The most important finding is that mcSOS decreased and the mcBTT reached a plateau to 24 months. In both mcSOS and mcBTT, the growth parameters were significant factors.Clinical Trial Registration: N/A What is known: • Metabolic bone disease is one of the possible long term adverse outcomes after preterm birth. • Metacarpal speed of sound (mcSOS) and metacarpal bone transmission time (mcBTT) decline in the early postnatal period. What is new: • During follow-up, mcSOS further decreased and reached its lowest point at 12 months, while the mcBTT reached a plateau up to 24 months. • Postnatal nutrition in relation to comorbidity does not meet the optimal mineralization rate of the developing preterm bone.

Strict isolation requires a different approach to the family of hospitalised patients with COVID-19: A rapid qualitative study.

BACKGROUND: The outbreak of the COVID-19 pandemic influenced family-centred care dramatically due to restricting visiting policies. In this new situation, nurses were challenged to develop new approaches to involve family members in patient care. A better understanding of these changes and the experiences of nurses is essential to make an adaptation of procedures, and to secure a family-centred approach in care as much as possible. OBJECTIVES: The aim of this study was to investigate how family involvement had taken place, and to explore the experiences of nurses with family involvement during the COVID-19 outbreak. In addition, we aimed to formulate recommendations for the involvement of family. METHODS: We conducted a qualitative study using patient record review and focus-group interviews between April and July 2020. We reviewed records of patients with confirmed COVID-19, who were admitted to the COVID-19 wards at two affiliated university hospitals in the Netherlands. All records were searched for notations referring to family involvement. In two focus-groups, nurses who worked at the COVID-19 wards were invited to share their experiences. The Rigorous and Accelerated Data Reduction (RADaR) method was used to collect, reduce and analyse the data. RESULTS: In total, 189 patient records were reviewed and nine nurses participated in the focus-group meetings. Patient records revealed infrequent and often unstructured communication with focus on physical condition. Nurses confirmed that communication with family was far less than before and that the physical condition of the patient was predominant. The involvement of family in care was limited to practicalities, although more involvement was described in end-of-life situations. Nurses experienced moral distress due to the visiting restrictions, though some acknowledged that they had experienced the direct patient care so intense and burdensome, that family contact simply felt too much. CONCLUSION: The communication with and involvement of family in hospital care changed enormously during the COVID-19 outbreak. Based on the identified themes, we formulated recommendations that may be helpful for family-centered care in hospitals during periods of restricted visiting policy.

Prevalence and risk factors of inappropriate use of intravenous and urinary catheters in surgical and medical patients.

BACKGROUND: Previously, the RICAT (Reduction of Inappropriate use of intravenous and urinary CATheters) study had been conducted by ourselves to reduce inappropriate use of intravenous and urinary catheters in medical wards to prevent healthcare-associated infections. AIM: To compare surgical and medical wards, and to determine risk factors for inappropriate catheter use. METHODS: A cross-sectional study was performed from October, 2017, to May, 2018, in surgical wards of two university hospitals in the Netherlands. Patients were prospectively observed every other week for seven months. Inappropriate use was compared with non-surgical wards in the RICAT study. FINDINGS: In all, 409 surgical patients were included, and they were compared with 1781 medical patients. Inappropriate use occurred in 36 (8.5%) out of 425 peripheral intravenous catheters in 373 surgical patients, compared to 400 (22.9%) out of 1747 peripheral intravenous catheters in 1665 medical patients, a difference of 14.4% (95% confidence interval (CI): 11.1-17.8; P < 0.001). Inappropriate use of urinary catheters occurred in 14 (10.4%) out of 134 surgical patients, compared to 105 (32.4%) out of 324 medical patients, a difference of 22.0% (95% CI: 14.7-29.2; P < 0.001). Subgroup analysis in the two university hospitals confirmed these differences. The main risk factor for inappropriate use of peripheral intravenous catheters was admission in medical wards (odds ratio (OR): 3.50; 95% CI: 2.15-5.69), which was also one of the main risk factors for urinary catheters (OR: 2.75; 95% CI: 1.36-5.55). CONCLUSION: Inappropriate use of catheters is more common in medical wards compared to surgical wards. Prevention strategies to reduce healthcare-associated infections should primarily focus on sites with high prevalence of inappropriate use.

Effects of medicinal food plants on impaired glucose tolerance: A systematic review of randomized controlled trials.

BACKGROUND: The objective of this systematic review was to assess available scientific data on the efficacy and safety of medicinal food plants for the treatment of impaired glucose tolerance. METHODS: We included randomized controlled trials (RCTs) with a minimum follow-up period of 6weeks. The diagnosis was determined by fasting plasma glucose values after two-hour oral glucose tolerance testing (OGTT). Two authors independently extracted data and evaluated bias. The Cochrane tool of risk of Bias Tool was used. RESULTS: This review included ten trials. Most studies were highly biased as data were incomplete or reporting was selective. The two-hour fasting plasma glucose after the curcumin extract intervention showed statistical significance after 3, 6 and 9months: p<0.01. Also, glycosylated haemoglobin levels A1c (HbA1c) values after curcumin extract intervention showed statistical significance after 3, 6 and 9months: p<0.01. Insulin resistance (HOMA-IR) after curcumin extract intervention showed statistical significance after 6months and after 9months: p<0.05 and p<0.01. CONCLUSIONS: Curcumin has shown the confident results to be effective for the treatment of impaired glucose tolerance. Fenugreek and flaxseed may also be effective, but due to low quality of these studies the results must be interpreted with caution.

Clinimetric properties of the Nociception Coma Scale (-Revised): A systematic review.

The Nociception Coma Scale is a nociception behaviour observation tool, developed specifically for patients with disorders of consciousness (DOC) due to (acquired) brain injury. Over the years, the clinimetric properties of the NCS and its revised version (NCS-R) have been assessed, but no formal summary of these properties has been made. Therefore, we performed a systematic review on the clinimetric properties (i.e. reliability, validity, responsiveness and interpretability) of the NCS(-R). We systematically searched CENTRAL, CINAHL, Embase, PsycInfo and Web of Science until August 2015. Two reviewers independently selected the clinimetric studies and extracted data with a structured form. Included studies were appraised on quality with the COSMIN checklist. Eight studies were found eligible and were appraised with the COSMIN checklist. Although nearly all studies lacked sample size calculation, and were executed by the same group of authors, the methodological quality ranged from fair to excellent. Important aspects of reliability, construct validity and responsiveness have been studied in depth and with sufficient methodological quality. The overview of clinimetric properties in this study shows that the NCS and NCS-R are both valid and useful instruments to assess nociceptive behaviour in DOC patients. The studies provide guidance for the choice in NCS-R cut-off value for possible pain treatment and cautions awareness of interprofessional differences in NCS-R measurements. SIGNIFICANCE: This systematic review provides a structured overview of the clinimetric properties of the Nociception Coma Scale (-Revised) and provides insights for a solid evidence-based nociception behaviour assessment and treatment plan.

The effectiveness of chlorhexidine-silver sulfadiazine impregnated central venous catheters in patients receiving high-dose chemotherapy followed by peripheral stem cell transplantation.

Immuno-compromised patients are at high risk for all kind of infections. Unfortunately, they need central venous catheters (CVCs), which are associated with infectious complications. In this study we examined the effectiveness of chlorhexidine-silver sulfadiazine impregnated CVCs to prevent catheter-related infections in patients receiving high-dose chemotherapy followed by peripheral stem cell transplantation. This historical cohort study evaluated 139 patients of whom 70 patients were provided with non-impregnated CVCs and 69 patients with impregnated CVCs. Patients were treated for different diagnoses. The median number of days a CVC stayed in situ was 18 in the non-impregnated group and 16 in the impregnated group. The median duration of neutropenia of patients with non-impregnated CVCs was 9 days compared with 7 days of patients with impregnated CVCs. We found less catheter colonization (CC) in patients with chlorhexidine-silver sulfadiazine CVCs (RR 0.63, 95% CI 0.41-0.96; P = 0.03). Catheter-related blood stream infections (CR-BSI) were also diminished, but this result was not statistically significant (RR 0.15, 95% CI 0.02-1.15; P = 0.06). The reduction in CC and CR-BSI did not diminish the incidence of fever. We conclude that the use of chlorhexidine-silver sulfadiazine impregnated CVCs provide an important improvement in the attempt to reduce CC and CR-BSI.