The view of Hong Kong parents on secondary use of dried blood spots in newborn screening program.

BACKGROUND: Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislation for biobanking. Parents' view on the retention and use of residual newborn blood samples could be cultural-specific and is important to consider for biobanking of rDBS. OBJECTIVE: To study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents. METHODS: A mixed-method approach was used to study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents of children 0-3 years or expecting parents through focus groups (8 groups; 33 participants) and a survey (n = 1012, 85% mothers) designed with insights obtained from the focus groups. We used framework analysis to summarise the themes as supportive factors, concerns and critical arguments for retention and secondary use of rDBS from focus group discussion. We used multiple logistic regression to assess factors associated with support for retention and secondary use of rDBS in the survey. RESULTS: Both in focus groups and survey, majority of parents were not aware of the potential secondary use of rDBS. Overall secondary use of rDBS in medical research was well accepted by a large proportion of Hong Kong parents, even if all potential future research could not be specified in a broad consent. However parents were concerned about potential risks of biobanking rDBS including leaking of data and mis-use of genetic information. Parents wanted to be asked for permission before rDBS are stored and mainly did not accept an "opt-out" approach. The survey showed that parents born in mainland China, compared to Hong Kong born parents, had lower awareness of newborn screening but higher support in biobanking rDBS. Higher education was associated with support in rDBS biobanking only among fathers. CONCLUSION: Long-term storage and secondary use of rDBS from newborn screening for biomedical research and a broad consent for biobanking of rDBS are generally acceptable to Hong Kong parents given their autonomy is respected and their privacy is protected, highlighting the importance of an accountable governance and a transparent access policy for rDBS biobanks.

Neonatal mortality in singleton pregnancies: a 20-year retrospective study from a tertiary perinatal unit in Hong Kong.

INTRODUCTION: The global neonatal death (NND) rate has been declining in recent decades, but there are no comprehensive data concerning the characteristics of NNDs in Hong Kong. This study investigated the trends and aetiologies of NNDs among singleton pregnancies in Hong Kong. METHODS: This study included all cases of NND from singleton pregnancies in a tertiary hospital in Hong Kong between 2000 and 2019. The rates, clinical characteristics, and aetiologies of NND were compared between the first (2000-2009) and the second (2010-2019) decades. RESULTS: The NND rate decreased from 1.66/1000 livebirths (97 cases) in the first decade to 1.32/1000 livebirths (87 cases) in the second decade. Congenital or genetic abnormalities (82 cases) caused 44.6% of all NNDs. There was a significant reduction from 0.82/1000 livebirths in the first decade to 0.52/1000 livebirths in the second decade (P=0.037). Other causes of NND were prematurity (69 cases; 37.5%), sepsis (16 cases; 8.7%), hypoxic-ischaemic encephalopathy (15 cases; 8.2%), and sudden infant death syndrome (2 cases; 1.1%). Gestational age-specific neonatal mortality for moderately preterm neonates (31-33 weeks of gestation) significantly decreased from 34.73/1000 in 2000-2009 to 8.63/1000 in 2010-2019 (P=0.001), but there were no significant changes in neonatal mortality for other gestations. CONCLUSION: The NND rate in Hong Kong is among the lowest worldwide. Neonatal deaths in our centre declined over the past two decades, mainly because of improvements in the prenatal diagnosis and treatment of congenital or genetic abnormalities, as well as an improved survival rate among moderately preterm neonates.

Perinatal mortality rate in multiple pregnancies: a 20-year retrospective study from a tertiary obstetric unit in Hong Kong.

INTRODUCTION: Multiple pregnancies have become more common, but their perinatal mortality rate remains higher than the rate among singleton pregnancies. This retrospective study investigated the prevalence and causes of perinatal mortality among multiple pregnancies in Hong Kong. METHODS: All multiple pregnancies in a university tertiary obstetric unit between 2000 and 2019 were reviewed, and the medical records of cases complicated by stillbirth and neonatal death were identified. The causes of perinatal mortality were determined based on clinical assessment and laboratory results, then compared between the first (2000-2009) and second (2010-2019) decades. RESULTS: The prevalence of multiple pregnancies increased from 1.41% in the first decade to 1.91% in the second decade (P<0.001). Compared with the first decade, the second decade had a lower stillbirth rate (14.72 vs 7.68 [both per 1000 births]; P=0.026), late neonatal death rate (4.78 vs 1.16 [both per 1000 livebirths]; P=0.030), and total mortality rate (25.32 vs 13.82 [both per 1000 births]; P=0.006). The decline in stillbirth rate was related to improvements in antenatal care and treatment. The decline in the late neonatal death rate was related to a reduction in preterm birth before 34 weeks (18.5% vs 15.2%; P=0.006), as well as an improvement in the mortality rate in the subgroup of 31-33 weeks (19.23 vs 0 [both per 1000 livebirths]; P=0.035). CONCLUSION: Although the prevalence of multiple pregnancies increased during the study period, the corresponding total perinatal mortality rate improved by 45.4%.

Promoting physical activity among children with cancer through an integrated experiential training programme with coaching: A qualitative study.

OBJECTIVE: The study aim was to investigate how the integrated experiential training programme with coaching could motivate children undergoing cancer treatment to adopt and maintain physical activity. METHODS: A descriptive phenomenological approach was used. A purposive sample of 23 children and their parents participated in one-to-one 25-30-minute semistructured interviews. Interviews were tape-recorded and transcribed. Colaizzi's method of descriptive phenomenological data analysis was used. RESULTS: The integrated programme motivated children with cancer by increasing children's and parents' knowledge of physical activity, enhancing confidence in physical activity and improving physical and psychological well-being. Moreover, the programme provided children with encouragement and psychological support through coach companionship. The programme also facilitated children's participation in physical activity and modified perceptions of physical activity. CONCLUSION: This study addressed a gap in the literature by exploring how an integrated programme promoted and maintained physical activity in childhood cancer patients. PRACTICE IMPLICATIONS: The integrated experiential training programme is feasible and can be easily sustained. Future studies could extend the programme beyond aspects of physical activity to help people change their health practices and maintain a healthy lifestyle.

Mortality and morbidity of extremely low birth weight infants in Hong Kong, 2010-2017: a single-centre review.

BACKGROUND: Extremely low birth weight (ELBW) infants exhibit high rates of mortality and morbidity. We retrospectively assessed factors associated with mortality and morbidity among ELBW infants. METHODS: Perinatal demographic data were reviewed for all ELBW infants born between 2010 and 2017 at a tertiary neonatal unit. RESULTS: For non-survivors (21% of ELBW infants) and survivors, the median gestational ages were 24.1 and 26.2 weeks, respectively, and median birth weights were 650 g and 780 g, respectively (all P<0.001). Regression analyses showed that non-survival was positively associated with lower gestational age (adjusted odds ratio [aOR]=6.71 for every 1-week decrease; 95% confidence interval [CI]=1.73-26.00; P=0.006) and grade 3 or 4 intraventricular haemorrhage (aOR=29.23; 95% CI=1.39-613.84; P=0.030); non-survival was negatively associated with the presence of bronchopulmonary dysplasia (aOR=0.01; 95% CI= <0.001-0.23; P=0.005); length of neonatal intensive care unit stay for survivors was positively associated with the presence of necrotising enterocolitis (B-coefficient=89.60; 95% CI=43.86-135.34; P<0.001); and length of hospital stay for survivors was positively associated with the presence of necrotising enterocolitis (B-coefficient=2.08; 95% CI=0.43-3.73; P=0.015) and a low Apgar score at 1 minute (B-coefficient=-0.63; 95% CI=-1.04 to -0.22; P=0.003). CONCLUSION: Extremely low birth weight infants exhibited significant mortality and morbidity; there was no survival prior to 23.6 weeks' gestation or below 550 g birth weight. The presence of grade 3 or 4 intraventricular haemorrhage was independently associated with non-survival. Survivors were significantly more likely to exhibit bronchopulmonary dysplasia; survivors with necrotising enterocolitis were more likely to require longer stays in the neonatal intensive care unit and in hospital.

An integrated experiential training programme with coaching to promote physical activity, and reduce fatigue among children with cancer: A randomised controlled trial.

OBJECTIVE: This study examined the effectiveness of an integrated programme in promoting physical activity, reducing fatigue, enhancing physical activity self-efficacy, muscle strength and quality of life among Chinese children with cancer. METHODS: A randomised controlled trial was conducted in a Hong Kong public hospital. Seventy eligible children were randomly assigned to an experimental group (n = 37) or a control group (n = 33). The experimental group received an integrated programme with 28 home visits from coaches over a 6-month period. The control group received a placebo intervention. The primary outcome was fatigue at 9 months (3 months after intervention completion). Secondary outcomes were physical activity levels, physical activity self-efficacy, muscle strength and quality of life at 9 months, assessed at baseline, and 6 and 9 months after starting the intervention. RESULTS: The experimental group reported significantly lower levels of cancer-related fatigue, higher levels of physical activity and physical activity self-efficacy, greater right- and left-hand grip strength and better quality of life than the control group at 9 months. CONCLUSION: The programme is effective and feasible to implement among children with cancer and offers an alternative means of ameliorating the healthcare burden. PRACTICE IMPLICATIONS: Healthcare professionals should build multidisciplinary partnerships to sustain such programmes.

Adventure-based training to promote physical activity and reduce fatigue among childhood cancer survivors: A randomized controlled trial.

BACKGROUND: Cancer-related fatigue is one of the most distressing symptoms reported by childhood cancer survivors. Despite the body of evidence that regular physical activity helps alleviate cancer-related fatigue, insufficient participation in physical activity is frequently observed among childhood cancer survivors. OBJECTIVES: This study examined the effectiveness of an adventure-based training programme in promoting physical activity, reducing fatigue, and enhancing self-efficacy and quality of life among Hong Kong Chinese childhood cancer survivors. DESIGN: A prospective randomised controlled trial. SETTINGS: A paediatric oncology outpatient clinic, a non-governmental organisation, and a non-profit voluntary organisation. PARTICIPANTS: Hong Kong Chinese childhood cancer survivors aged 9-16 years who reported symptoms of fatigue and had not engaged in regular physical exercise in the past 6 months. METHODS: The experimental group underwent a 4-day adventure-based training programme. The control group received a placebo intervention. The primary outcome was fatigue at 12 months. Secondary outcomes were physical activity levels, self-efficacy and quality of life at 12 months. Data collection was conducted at baseline, and 6 and 12 months after the intervention began. We performed intention-to-treat analyses. RESULTS: From 6 January, 2014 to 8 June, 2015, we randomly assigned 222 eligible childhood cancer survivors to either an experimental (n = 117) or a control group (n = 105). The experimental group showed statistically significantly lower levels of cancer-related fatigue (P < 0.001), higher levels of self-efficacy (P < 0.001) and physical activity (P < 0.001), and better quality of life (P < 0.01) than the control group at 12 months. CONCLUSIONS: This study provides evidence that adventure-based training is effective in promoting physical activity, reducing cancer-related fatigue, and enhancing self-efficacy and quality of life among Hong Kong Chinese childhood cancer survivors. These results may help inform parents and healthcare professionals that regular physical activity is crucial for the physical and psychological wellbeing and quality of life of childhood cancer survivors.

Duration of puberty in preterm girls.

OBJECTIVES: Preterm birth is associated with altered pubertal timing, but the effect on pubertal duration has rarely been assessed. Here, we tested the hypothesis that preterm birth is associated with shorter duration of puberty among girls in Hong Kong where preterm birth has little social patterning. METHODS: In the population-representative Chinese birth cohort "Children of 1997", we used multivariable linear regression to assess the association of preterm status (≤36 completed gestational weeks, n = 170; term birth 37-42 gestational weeks, n = 3476) with duration of puberty, adjusted for parent's highest education, mother's place of birth, maternal smoking during pregnancy, gestational diabetes, preeclampsia, and mother's age of menarche. RESULTS: The mean duration from thelarche to menarche was 2.53 years. Preterm girls had a shorter duration from thelarche to menarche by 2.6 months, 95% confidence interval 0.5-4.7 months. Age of menarche did not differ by preterm status but preterm girls had later thelarche. Preterm birth was not associated with a shorter duration from pubarche to menarche. CONCLUSIONS: Preterm births may be associated with shorter duration of puberty from thelarche to menarche, possibly through effects of in utero estrogen exposure, the drivers of thelarche, or the drivers of pubertal duration/progression, with potential implications for subsequent risk of cardiovascular disease and hormonal cancers.

Gestational age and adolescent mental health: evidence from Hong Kong's 'Children of 1997' birth cohort.

BACKGROUND: Preterm, and more recently early term, birth has been identified as a risk factor for poor health. Whether the sequelae of late preterm or early term birth extends to poor mental health and well-being in adolescence is unclear and has not been systematically assessed. METHOD: Linear regression was used to assess the adjusted associations of gestational age (very/moderate preterm (<34 weeks, n=85), late preterm (34-36 weeks, n=305), early term (37-38 weeks, n=2228), full term (39-40 weeks, n=4018), late term (41 weeks, n=809), post-term (≥42 weeks, n=213)) with self-reported self-esteem at ∼11 years (n=6935), parent-reported Rutter score assessing the common emotional and behavioural problems at ∼7 years (n=6292) and ∼11 years (n=5596) and self-reported depressive symptoms at ∼13 years (n=5795) in a population-representative Hong Kong Chinese birth cohort 'Children of 1997' where gestational age has little social patterning. RESULTS: Very/moderate preterm birth was associated with higher Rutter subscore for hyperactivity (ß coefficients 0.5, 95% CI 0.01 to 1.00) at ∼7 years but not at ∼11 years, adjusted for sex, age, socio-economic position, parents' age at birth, birth order and secondhand smoke exposure. Similarly adjusted, late preterm, early term, late term and post-term birth were not associated with self-esteem or depressive symptoms. CONCLUSIONS: In a population-representative birth cohort from a non-Western-developed setting, gestational age had few associations with mental health and well-being in adolescence, whereas very preterm birth was specifically associated with hyperactivity in childhood. Inconsistencies with studies from Western settings suggest setting specific unmeasured confounding may underlie any observed associations.

Localisation of occult breast lesion: a comparative analysis of hookwire and radioguided procedures.

OBJECTIVES: For occult breast lesions, to retrospectively compare the performance of radioguided and hookwire methods in terms of ease of localisation and surgical procedures, and the ability to obtain a specimen with a clear margin. DESIGN: Retrospective study. SETTING: Regional hospital, Hong Kong. PATIENTS: All patients who underwent occult breast lesion localisation by either ultrasonography- or stereotactic-guided radioguided occult lesion localisation or hookwire localisation from August 2003 to December 2007 were included. MAIN OUTCOME MEASURES: Demographic data, localisation and operation procedure time, size of specimens and margin clearance. RESULTS: In all, 165 patients (mean age, 52 years) having these procedures were assessed. In 98 instances, the procedure (hookwire=53, radioguided=45) was for diagnostic purposes and in 67 (hookwire=23, radioguided=44) for therapy. Both techniques attained a very high success rate (>95%). For radioguided occult lesion localisation, there was a significantly shorter mean localisation time than for hookwire localisation (18 min versus 31 min; P<0.001), while the mean operating time was similar. Radioguided occult lesion localisation entailed larger specimens and fewer cases with close or involved margins, or recourse to intra-operative re-excision or a second operation, but these differences were not statistically significant. Within the radioguided occult lesion localisation group, there were 42 patients who had a simultaneous sentinel lymph node biopsy (sentinel node and occult lesion localisation), with a 98% success rate although no lymph node metastasis was revealed. CONCLUSION: Radioguided occult lesion localisation excels in yielding a much shorter localisation time and is as good as hookwire localisation in terms of specimen margin clearance and need for re-excision. It also offers the advantage of enabling simultaneous sentinel lymph node biopsy for invasive cancers. Therefore it is a recommended procedure that should be used more widely.

Screening options for Down syndrome: how women choose in real clinical setting.

OBJECTIVE: To study pregnant women's preference among various screening options for Down syndrome (DS) in routine clinical setting, and its potential association with women's demographic characteristics. METHODS: Women aged 35 years and older carrying singleton pregnancy were offered a variety of screening tests for DS before 14 weeks of gestation. Their preference was confirmed by the test they actually underwent. The association between women's choice of test and a number of demographic characteristics was studied using multinomial regression. RESULTS: Among 1967 eligible women, 619 opted for first-trimester screening test (FTS), 924 for partial integrated test (PIT), and 424 for full integrated test (FIT). Nulliparous women and working mothers were more likely to choose FTS and FIT. Women with history of subfertility were more likely to choose FIT. Women with family history of chromosomal abnormalities were more likely to choose FTS. The choice of screening test could be predicted for 49.9% of women using four demographic characteristics. CONCLUSIONS: Among older women of predominantly Chinese ethnicity, integrated test is a favorite alternative to FTS. Their choice of DS screening test can be predicted by their obstetric and socioeconomic characteristics. Many women show willingness to pay for a test with a lower false-positive rate.

Minimally invasive technology in the management of breast disease.

Minimally invasive surgery is gaining popularity around the world because it achieves the same or even superior results when compared to standard surgery but with less morbidity. Minimally invasive breast surgery is a broad concept encompassing new developments in the field of breast surgery that work on this minimally invasive principle. In this regard, breast-conserving surgery and sentinel lymph node biopsy are good illustrations of this concept. There are three major areas of progress in the minimally invasive management of breast disease. First, percutaneous excisional devices are now available that can replace the surgical excision of breast mass lesions. Second, various ablative treatments are capable of destroying breast cancers in situ instead of surgical excision. Third, mammary ductoscopy provides a new approach to the investigation of mammary duct pathology. Clinical experience and potential applications of these new technologies are reviewed.