Extra Visits Research Articles

Converting immunosuppression from an oral suspension to a granule formulation of tacrolimus in pediatric renal transplant recipients.

OS of tacrolimus prepared from tacrolimus powder is not licensed for children. A licensed GF for OS allows flexibility for body weight-based dose adjustments. This study aimed at exploring the efficacy of conversion from OS to the GF of tacrolimus in stable pediatric renal transplant recipients. Records of 25 pediatric renal transplant recipients aged under 18years who were switched from an unlicensed tacrolimus OS to GF were reviewed. At day 0, 1week, and 4-8weeks post-conversion, there were no differences regarding daily tacrolimus dose (3.4±3 vs 3.5±2.9 vs 3.5±2.9mg/day), trough tacrolimus levels (4.5±2.7 vs 4.2±2.7 vs 4.4±3.1ng/mL), dose-normalized trough tacrolimus levels (1.7±1.1 vs 1.5±1.0 vs 1.7±1.3ng/mL/mg), PCr (65.6±29.4 vs 67.9±30.4 vs 69.8±27.9μmol/L), and eGFR (73±24.9 vs 68.7±20.2 vs 65.5±18.2mL/min/1.73m2 ) (P>.05). GF dose adjustment was required in 52% of participants. Eighty-eight percent of patients had to return for repeat tacrolimus levels following dose modifications, generating 33 extra visits (≥2 extra visits for 1/3 of subjects). No rejection episodes occurred in the year after conversion. In conclusion, conversion from tacrolimus OS to GF in stable pediatric renal transplant recipients is safe and efficacious. However, close therapeutic drug monitoring in the immediate post-conversion period is necessary.

The functional outcome of sacral nerve stimulation for faecal incontinence can be improved by using lead model 3889 and a standardized implantation technique.

Sacral nerve stimulation has been recognized as an effective treatment option for faecal incontinence when conservative therapy has failed. Refinement of the procedural technique and the use of a curved stylet may improve the functional outcome. Our aim was to explore the relationship between lead model, functional outcome, stimulation amplitude and the need for extra visits during the first year of follow-up. Patient data from May 2009 to February 2017, which were prospectively collected in a local database, were extracted and analysed for differences between lead model and improvement in incontinence scores, stimulation amplitude and the need for additional visits during the first year of follow-up. A foramen lead model 3093(straight stylet) was used in 134 patients and lead model 3889(curved stylet) was used in 40 patients. There were no differences in baseline characteristics or incontinence scores. Comparing results between the two lead models we found that the improvement (delta value) in the Wexner score at 6months' follow-up (P=0.05) and the St Mark's score at 12months' follow-up (P=0.02) was greater in patients implanted with lead model 3889(curved stylet) compared with patients implanted with lead model 3093(straight stylet). Patients implanted with lead model 3889 (curved stylet) were less likely to have to alter the stimulation amplitude or pole configuration during the first year of follow-up (P=0.04). No difference was found for stimulation amplitude (P=0.170) or the need for additional visits (P=0.663). Lead model 3889 (curved stylet) improves functional results compared with lead model 3093 (straight stylet) during the first year of follow-up. Lead model 3889 (curved stylet) reduces the need for reprogramming but has no influence on stimulation amplitude or the number of additional visits required.

Infant nasal nitric oxide over time: natural evolution and impact of respiratory tract infection.

Nasal nitric oxide (NO) discriminates between patients with primary ciliary dyskinesia (PCD) and healthy individuals. We report feasibility of measurement and natural evolution of nasal NO and upon the impact of respiratory tract infection (RTI) on nasal NO in healthy infants (HI), followed from birth until age 2 years, with comparison to nasal NO in infant PCD.Tidal-breathing nasal NO measurements were performed at scheduled visits at 2 weeks old and at 4, 8, 12, 18 and 24 months old, with extra visits during RTIs. Historical nasal NO measurements for infant PCD were included for comparison.Altogether, 224 nasal NO measurements were performed in 44 enrolled infants. Median newborn nasal NO was 46 ppb (interquartile range (IQR) 29-69 ppb), increasing at a rate of 5.4% per month up to 283 ppb (IQR 203-389 ppb) at the age of 2 years. RTIs in 27 out of 44 infants temporarily suppressed nasal NO by 79%. Values for nasal NO in seven infants with PCD ranged from 6-80 ppb. The success rate to accept nasal NO sampling was 223 out of 224 measurements (99.6%).Tidal-breathing nasal NO measurement was indeed feasible in infancy and nasal NO in HI increased significantly up to 2 years of age, in opposition to nasal NO in PCD cases, which stayed low past 2 years of age. RTI episodes caused marked, temporary reductions in nasal NO in HI indistinguishable from that in infant PCD, suggesting that nasal NO should be measured in RTI-free intervals.

Screening and treatment of obesity in school health care - the gap between clinical guidelines and reality.

School health care offers a natural setting for childhood obesity interventions. Earlier studies reveal inadequate screening and treatment in primary care. However, longitudinal studies in unselected populations are lacking. We aimed to examine how school nurses and physicians identified obesity, diagnosed it and offered interventions over primary school. We compared the results with Finnish recommendations. From our cohort of 2000 primary school sixth graders (aged 12-14), 172 were obese at least once during primary school. We manually collected retrospective electronic health record (EHR) data of these 'ever-obese' children. Of the ever-obese children, 96% attended annual nurse assessments more than twice. School physicians met 53% of the ever-obese children at health checks at first grade and 93% at fifth grade. Of overweight-related extra visits to school nurses, 94% took place without parents. Parents were present in 48% of extra school physician visits. Only 29% of the 157 who became obese during the first five school grades received an obesity diagnosis. However, school physicians mentioned weight problems in EHR for 90% of the children and, similarly, school nurses for 99%. The majority received a treatment plan at least once. For 78%, at least one plan was made with the parents. Still, 28% missed nutrition plans, 31% exercise plans and 90% lacked recorded weight development targets. The gap between clinical guidelines and reality in school health care could be narrowed by improving diagnosing and parent collaboration. Obstacles in parent involvement and work methods in school health care need further study.

Shame and avoidance as barriers in midwives’ communication about body weight with pregnant women: A qualitative interview study

IntroductionExcessive gestational weight gain, regardless of initial BMI, is associated with perinatal risks for both mother and offspring and contributes to obesity in women. Studies report that healthcare professionals find it difficult to communicate about weight and pregnant women perceive healthcare professionals as unconcerned, leaving many women uninformed about weight recommendations and risks. We aimed to explore how midwives approach communication about gestational weight gain recommendations, and to characterize communication barriers and facilitators. MethodsSeventeen midwives from different areas in Sweden were interviewed by a therapist using semi-structured interviews. Interviews were transcribed verbatim and analysed by three researchers using latent content analysis. Recurrent themes were identified and formulated. ResultsThe main theme identified in the latent part of the analysis was “midwives use avoidant behaviours to cope with fear of inflicting worries, shame or feelings of guilt in pregnant women”. Avoidant behaviours include: adjusting weight recommendations, toning down risks and avoid talking about weight. Subthemes identified were (I) Conflicting responsibilities in midwives’ professional identity (II) Perceived deficiencies in the working situation. ConclusionMidwives’ empathy and awareness of weight stigma strongly affects communication about weight with pregnant women, and midwives’ use of avoidant behaviours constitutes salient information barriers. More research is needed on whether gestational weight guidelines and weighing routines for all women, resources for extra visits, training in specific communication skills and backup access to other professions can facilitate for midwives to initiate and communicate about healthy gestational weight development, enabling more pregnant women to make well-informed lifestyle choices.

Minimizing prostate cancer admissions via enhanced outpatient care: A model for savings.

46 Background: Hospitalization is a major contributor to cost in oncology. Minimizing avoidable admissions can lead to substantial savings. Methods: We studied Medicare claims data from 160 admissions for prostate cancer (PCa) patients from 1/2012 to 5/2015. Admissions with the lowest 50th percentile of charges were assessed for being potentially avoidable by 2 independent chart reviews; remaining admissions were assumed to be unavoidable due to medical complexity. Common admitting diagnoses were targeted by theoretical care pathways designed to minimize avoidable admissions via expedited outpatient follow-up. We compared the cost of the avoidable admissions to that of implementing 3 such pathways then estimated the financial impact. Results: Total cost for all 160 admissions was $1,979,200. 25% of these admissions, accounting for $494,800, were deemed potentially avoidable. Our model exchanged each of these admissions for a routine clinic visit which led to an estimated $464,800 in savings, or a 23% improvement in total cost. The most common admitting diagnoses were fever (18%), pain (12%), and dehydration (8%). On review, 3/9 fever admissions in this set were deemed avoidable with 1 extra clinic visit, 3 with 3 visits, and 3 were unavoidable, yielding a 53% reduction in cost for this diagnosis. Similar analyses led to cost reductions of 75% and 66% for pain and dehydration admissions, respectively. Combining just these 3 theoretical interventions led to an estimated savings of $146,955, or a 7.4% improvement in total cost. Conclusions: A sizable portion of PCa admissions can be avoided, with ample savings, if a system is in place to provide the additional care that often exceeds the capabilities of a busy practice. [Table: see text]

Adverse events in patients in home healthcare: a retrospective record review using trigger tool methodology

ObjectiveHome healthcare is an increasingly common part of healthcare. The patients are often aged, frail and have multiple diseases, and multiple caregivers are involved in their treatment. This study explores...

Unscheduled Visits of Patients with Familial Melanoma to a Pigmented Lesion Clinic: Evaluation of Patients' Characteristics and Suspicious Lesions.

Approximately 10% of all melanomas occur in subjects with a family history of melanoma. This retrospective follow-up study investigated the characteristics of patients with familial melanoma who made unscheduled visits to our pigmented lesions clinic, and the diagnosis of excised lesions. A total of 110 (9%) out of 1,267 patients made at least one unscheduled visit between May 2011 and February 2016. Histopathology was taken from 59 patients. Thirty-four naevi, 7 melanomas and 3 basal cell carcinomas were detected. All patients with melanoma were CDKN2A carriers and all melanomas were discovered at a very early stage. In this patient population it appears to be safe to limit visits to once or twice yearly, provided patients are easily able to make an unscheduled extra visit if they have a worrisome lesion. We recommend supporting patients' self-reliance by stimulating them to carry out self-examination of their skin.

Pilot Study to Determine Optimal Stent Duration Following Ureteroscopy: Three versus Seven days

Background/Aims: Many providers elect to place a stent following ureteroscopy for nephrolithiasis, but little data exists on the optimal duration to leave a stent. We sought to determine whether there are any differences in post-operative outcomes for patients with a 3 versus 7-day stent following ureteroscopy. Methods: We retrospectively reviewed 247 patients who underwent unilateral ureteroscopy with lithotripsy, 79 of whom removed a stent with an extraction string at 3 or 7 days post-operatively. These 2 groups were compared with regard to demographic information, pre-operative variables, and post-operative outcomes. Results: Of all patients, 33% experienced a post-procedure related event (phone call, extra clinic visit, and emergency department visit) within 30 days of their procedure, 39% of 3-day stent patients compared to 21% of 7-day patients (p = 0.11). Within the 3 days following stent removal, 3-day stent patients were significantly more likely to have a post-procedure related event than 7-day patients (23 vs. 3%, p = 0.026). Conclusion: One third of patients with a post-operative ureteral stent will seek medical care in the 30 days following ureteroscopy. Leaving a stent for 3 versus 7 days may lead to worse outcomes with regard to post-operative events and fank pain.

Computed tomography based evaluation of prostatic fiducial marker migration between the periods of insertion and simulation.

The aim of this study was to determine whether significant fiducial marker migration occurs between the periods of prostatic marker insertion and computed tomography (CT) performed for radiotherapy planning and if a waiting period is necessary. Thirty-nine patients with prostate adenocarcinoma underwent fiducial marker insertion before radiotherapy between June 2013 and December 2015. Three markers were inserted by one radiologist under the guidance of transrectal ultrasonography. All patients underwent CT three hours after insertion to confirm the number and position of fiducial markers. Radiotherapy planning CT was performed on an average of 11 days (range 7-20) after insertion. CT images were imported into treatment planning system to analyze the position of fiducial markers. Point- based marker match algorithm was used to find the distance of marker migration. The mean and maximum distances between each fiducial markers were calculated. The mean distance of migration was 1.029±0.42 mm (range 0.23-1.93 mm) and the maximum distance was 1.361±0.59 mm (range 0.25-2.74 mm). The distance of marker migration was not statistically significant for the groups organized according to the timing of marker insertion, prostate volume, patient age, prostate specific antigen level and Gleason score. According to our results significant fiducial marker migration did not occur during the interval between insertion and treatment planning CT. It should be taken into consideration that performing simulation on the same day as marker insertion might prevent increased cost and delayed radiation therapy by saving the patients from extra visits to the clinic.

Non-recruitment to and selection bias in studies using echocardiography in haemodialysis patients.

It is unknown whether patients recruited to renal cardiac imaging studies are fully representative of the investigated population and whether there are differences in characteristics and survival between participants and non-participants (excluded or declined consent). Subjects and Methods Four hundred thirty-five maintenance haemodialysis patients were screened in an observational, prospective study. Baseline demographics, laboratory results, social deprivation scores and survival data were collected from patient records. All patients were followed-up until death, renal transplantation or 16 November 2015. Forty-four patients were excluded (16 language barrier, 10 mental incapacity, 9 severe co-morbid illness and 9 because of immobility), 172 patients declined consent (84% due to reluctance to attend for an extra visit) and 219 patients were recruited. Excluded patients had a lower mean haemoglobin (10.2 g/dL vs 10.7 g/dL), phosphate (4.15 mg/dL vs 4.74 mg/dL), albumin (3.6 g/dL vs 3.8 g/dL) and higher C-reactive protein (3.2 mg/dL vs 1.6 mg/dL) compared with recruited patients. No difference was identified between groups for Charleston comorbidity index (P = 0.115) or social deprivation scores. After a median follow-up of 29.7 (25th-75th percentile, 21.1-34.3) months, there were 141 deaths. In a multivariable Cox regression model adjusting for BMI, age, Charleston comorbidity index, haemoglobin, albumin, smoking status and diabetes mellitus, patients who declined consent had an adjusted HR of 1.70, 95% CI 1.10-2.52, and excluded patients had an adjusted HR of 1.30, 95% CI 0.75-2.25, for all-cause mortality compared with recruited patients. Patients recruited to the study had longer survival compared with non-participants. Research studies should document phenotypes of non-participants to aid interpretation and generalizability of results.

Optimal schedule for monitoring a plant incursion when detection and treatment success vary over time

Management of an invasive plant species can be viewed as two separate and successive processes. The first, survey, aims to find infested areas and remove individuals. The second, monitoring, consists of repeated visits to these areas in order to prevent possible re-emergence. As detection probability may vary over time, the timing and number of monitoring visits can dramatically impact monitoring efficacy. We explore the optimal timing and number of monitoring visits, by focusing on one infested site. Our decision-analysis framework defines an optimal monitoring schedule which accounts for a time-dependent probability of detection, based on the presence/absence of a flower. We use this framework to investigate the optimal monitoring schedule for Hieracium aurantiacum, an invasive species in the Australian Alps and many other countries. We also perform a sensitivity analysis to draw more general conclusions. For H. aurantiacum eight monitoring visits (compared to 12 visits in the current program) are sufficient to obtain a 99% monitoring efficacy. When four or fewer visits to a site are allowed, it is optimal to visit during the high season, when the weed is likely to initiate flowering. Any extra visits should be scheduled in the early season, before the plants flower. The sensitivity analysis shows that increasing the detection probability early in the season has a greater impact than increasing it late in the season. An effective treatment method increases the value of site visits late in the season, when the detection probability is higher. Our decision-analysis framework can assist invasive species managers to reduce or reallocate management resources by determining the minimum number of monitoring visits required to satisfy an acceptable risk of re-emergence.

Improved Safety and Cost Savings from Reductions in Cast-Saw Burns After Simulation-Based Education for Orthopaedic Surgery Residents.

The purpose of this investigation was to characterize the clinical efficacy and cost-effectiveness of simulation training aimed at reducing cast-saw injuries. Third-year orthopaedic residents underwent simulation-based instruction on distal radial fracture reduction, casting, and cast removal using an oscillating saw. The analysis compared incidences of cast-saw injuries and associated costs before and after the implementation of the simulation curriculum. Actual and potential costs associated with cast-saw injuries included wound care, extra clinical visits, and potential total payment (indemnity and expense payments). Curriculum costs were calculated through time-derived, activity-based accounting methods. The researchers compared the costs of cast-saw injuries and the simulation curriculum to determine overall savings and return on investment. In the 2.5 years prior to simulation, cast-saw injuries occurred in approximately 4.3 per 100 casts cut by orthopaedic residents. For the 2.5-year period post-simulation, the injury rate decreased significantly to approximately 0.7 per 100 casts cut (p = 0.002). The total cost to implement the casting simulation was $2,465.31 per 6-month resident rotation. On the basis of historical data related to cast-saw burns (n = 6), total payments ranged from $2,995 to $25,000 per claim. The anticipated savings from averted cast-saw injuries and associated medicolegal payments in the 2.5 years post-simulation was $27,131, representing an 11-to-1 return on investment. Simulation-based training for orthopaedic surgical residents was effective in reducing cast-saw injuries and had a high theoretical return on investment. These results support further investment in simulation-based training as cost-effective means of improving patient safety and clinical outcomes. Therapeutic Level III. See Instructions for Authors for a complete description of levels of evidence.

Surgical treatment in deep digital sepsis in cattle – Claw preserving methods and claw amputation

Still today lameness represents a major health problem in many dairy farms with prevalences ranging from 0 to 70%; mean prevalence rates of about 36% were reported by many authors. Unfortunately, the lameness prevalence is highly underestimated by farmers. An acceptable lameness prevalence in dairy herds regarding ethical and economical considerations is 5% to maximal 10%. Lameness continues to be one of the largest economic drains on dairy farming and is one of the three most common reason for culling, preceded by reproductive failure and mastitis. Lameness results in direct loss via culling as well as indirect loss via decreased production of milk, milk fat and protein, reproductive failure, prolonged calving interval, extra labor of the dairy farmer and the foot trimmer, extra visits of the veterinarian, treatment costs and costs for discarded milk.

Cost-effectiveness of molecular point-of-care testing for influenza viruses in elderly patients at ambulatory care setting.

BackgroundEarly initiation of antiviral therapy in elderly patients with influenza is associated with reduced risk of extra clinic visit, hospitalization and death. This study examined the cost-effectiveness of molecular POCT for detection of influenza viruses in Hong Kong elderly patients with influenza-like illness (ILI) in the outpatient clinics.MethodsA decision analytic model was used to simulate outcomes of a hypothetical cohort of elderly patients presented with ILI at outpatient clinics during peak season of influenza with two diagnostic approaches: Rapid molecular assay (POCT-PCR group) and clinical judgement with no POCT. Outcome measures included influenza-associated direct medical cost, hospitalization and mortality rates, quality-adjusted life year loss (QALY loss), and incremental cost per QALY saved (ICER).ResultsIn base-case analysis, POCT-PCR group was expected to reduce hospitalization (1.38% versus 2.85%) and mortality rate (0.08% versus 0.16%) and save 0.00112 QALYs at higher cost (by USD33.2 per ILI patient), comparing with clinical judgement group. The ICER of POCT-PCR was 29,582 USD/QALY saved. One-way sensitivity analyses found ICER sensitive to: Hospitalization rate without prompt antiviral therapy; odds ratio of hospitalization with prompt therapy; influenza prevalence; patient age and mortality rate of hospitalized patients. POCT-PCR was cost-effective in 60.6% and 99.4% of 10,000 Monte Carlo simulations at willingness-to-pay threshold of 1x and 3x gross domestic product per capita of Hong Kong, respectively.ConclusionsMolecular POCT for influenza detection in elderly patients with ILI at outpatient clinics during peak influenza season appeared to be cost-effective in Hong Kong.

Defense Mechanisms and Utilization in Cancer Patients Undergoing Radiation Therapy: A Pilot Study.

A group of 49 patients who had been diagnosed with cancer during the preceding year and who were receiving radiation therapy were assessed for their use of defense mechanisms, as well as for their level of psychological distress. In addition, their utilization of medical services was determined. It was predicted that the use of services that were under the patients' control-namely, requesting extra outpatient visits and making trips to the emergency department-would be related to the patients' use of defense mechanisms, whereas a treatment option not under the patients' control-overnight hospitalization based on physicians' assessment of condition-would not be related to defense use. The findings confirmed the hypotheses. Outpatient visits were strongly predicted by defense use, whereas hospitalization was determined by psychological distress. However, emergency department visits were determined by both defense use and psychological distress. In addition, an interaction between defense and distress was found to predict hospitalization.

Effect of minimal acupuncture for infantile colic: a multicentre, three-armed, single-blind, randomised controlled trial (ACU-COL).

BackgroundEvidence for treating infantile colic with acupuncture is contradictory.AimTo evaluate and compare the effect of two types of acupuncture versus no acupuncture in infants with colic in public child health centres (CHCs).MethodsA multicentre, randomised controlled, single-blind, three-armed trial (ACU-COL) comparing two styles of acupuncture with no acupuncture, as an adjunct to standard care, was conducted. Among 426 infants whose parents sought help for colic and registered their child's fussing/crying in a diary, 157 fulfilled the criteria for colic and 147 started the intervention. All infants received usual care plus four extra visits to CHCs with advice/support (twice a week for 2 weeks), comprising gold standard care. The infants were randomly allocated to three groups: (A) standardised minimal acupuncture at LI4; (B) semi-standardised individual acupuncture inspired by Traditional Chinese Medicine; and (C) no acupuncture. The CHC nurses and parents were blinded. Acupuncture was given by nurses with extensive experience of acupuncture.ResultsThe effect of the two types of acupuncture was similar and both were superior to gold standard care alone. Relative to baseline, there was a greater relative reduction in time spent crying and colicky crying by the second intervention week (p=0.050) and follow-up period (p=0.031), respectively, in infants receiving either type of acupuncture. More infants receiving acupuncture cried <3 hours/day, and thereby no longer fulfilled criteria for colic, in the first (p=0.040) and second (p=0.006) intervention weeks. No serious adverse events were reported.ConclusionsAcupuncture appears to reduce crying in infants with colic safely.Trial registration numberNCT01761331; Results.

P081 The cost of cost-saving HIV drug switches in a small DGH HIV unit

IntroductionIn July 2016 NHSE circulated a letter regarding Commissioning for Value and antiretroviral drug switches. The letter noted that ‘These switches have been identified as not needing to recall patients...

Attendance of MSM at Genitourinary Medicine services in England: implications for selective HPV vaccination programme (a short communication)

BackgroundHuman papillomaviruses (HPV) immunisation programmes for female adolescents in the UK offer relatively little benefit to men who have sex with men (MSM). Targeted HPV vaccination for MSM may reduce...

Care in subsequent pregnancies following stillbirth: an international survey of parents.

To assess the frequency of additional care, and parents' perceptions of quality, respectful care, in pregnancies subsequent to stillbirth. Multi-language web-based survey. International. A total of 2716 parents, from 40 high- and middle-income countries. Data were obtained from a broader survey of parents' experiences following stillbirth. Data were analysed using descriptive statistics and stratified by geographic region. Subgroup analyses explored variation in additional care by gestational age at index stillbirth. Frequency of additional care, and perceptions of quality, respectful care. The majority (66%) of parents conceived their subsequent pregnancy within 1 year of stillbirth. Additional antenatal care visits and ultrasound scans were provided for 67% and 70% of all parents, respectively, although there was wide variation across geographic regions. Care addressing psychosocial needs was less frequently provided, such as additional visits to a bereavement counsellor (10%) and access to named care provider's phone number (27%). Compared with parents whose stillbirth occurred at ≤ 29 weeks of gestation, parents whose stillbirth occurred at ≥ 30 weeks of gestation were more likely to receive various forms of additional care, particularly the option for early delivery after 37 weeks. Around half (47-63%) of all parents felt that elements of quality, respectful care were consistently applied, such as spending enough time with parents and involving parents in decision-making. Greater attention is required to providing thoughtful, empathic and collaborative care in all pregnancies following stillbirth. Specific education and training for health professionals is needed. More support for providing quality care in pregnancies after stillbirth is needed. Study rationale and design More than two million babies are stillborn every year. Most parents will conceive again soon after having a stillborn baby. These parents are more likely to have another stillborn baby in the next pregnancy than parents who have not had a stillborn baby before. The next pregnancy after stillbirth is often an extremely anxious time for parents, as they worry about whether their baby will survive. In this study we asked 2716 parents from 40 countries about the care they received during their first pregnancy after stillbirth. Parents were recruited mainly through the International Stillbirth Alliance and completed on online survey that was available in six languages. Findings Parents often had extra antenatal visits and extra ultrasound scans in the next pregnancy, but they rarely had extra emotional support. Also, many parents felt their care providers did not always listen to them and spend enough time with them, involve them in decisions, and take their concerns seriously. Parents were more likely to receive various forms of extra care in the next pregnancy if their baby had died later in pregnancy compared to earlier in pregnancy. Limitations In this study we only have information from parents who were able and willing to complete an online survey. Most of the parents were involved in charity and support groups and most parents lived in developed countries. We do not know how well the findings relate to other parents. Finally, our study does not include parents who may have tried for another pregnancy but were not able to conceive. Potential impact This study can help to improve care through the development of best practice guidelines for pregnancies following stillbirth. The results suggest that parents need better emotional support in these pregnancies, and more opportunities to participate actively in decisions about care. Extra support should be available no matter how far along in pregnancy the previous stillborn baby died.