Continuing a pregnancy after diagnosis of a lethal fetal abnormality: Views and perspectives of Australian health professionals and parents.

BACKGROUND: Couples who receive a prenatal diagnosis of a fetal anomaly in Victoria, Australia, are generally offered a choice about whether or not to continue with the pregnancy. When a severe or 'lethal' abnormality is diagnosed, some couples decide to continue the pregnancy in the knowledge that their baby may die before or shortly after birth. Several Australian parents who published personal accounts of that experience describe a lack of clear clinical pathways, suggesting those who decide to continue a pregnancy following a diagnosis of a 'lethal fetal abnormality' (LFA) may not be receiving optimal care. AIMS: This study aimed to provide empirical Australian evidence of views and experiences of care provision from health professionals (HPs) and parents. MATERIALS AND METHODS: Two sequential phases of this qualitative study purposively recruited a range of key HPs and parents. Semi-structured interviews were thematically analysed. RESULTS: Findings reveal that current care provision following prenatal diagnosis of an LFA is 'ad hoc' with both participant groups identifying disparities between parents' needs and available care. However, the goodwill and good intentions of all HPs involved was apparent. There was strong support from both groups for considering a model of perinatal palliative care (PPC) based on existing programs overseas. CONCLUSIONS: Future care provision in this setting needs to be redefined. A formal PPC program could ensure better and more consistent experiences of support for parents as well as the HPs working in the field.

Validity and intrarater reliability of a novel device for assessing Plantar flexor strength.

INTRODUCTION: Plantar flexor weakness is an identified prospective factor for developing Achilles tendinopathy. Various authors have reported relationships between symptoms and weakness of this muscle group. Despite this relationship, many clinicians and researchers fail to examine Plantar flexor strength due to the cumbersome, stationary and expensive nature of an isokinetic dynamometer (IKD), known as the "Gold Standard". This study examined the validity and reliability of a fast, easy and portable device for assessing plantarflexion. METHODS: Validity between the Cybex NORM® by Humac and the C-Station by Fysiometer was explored using Pearson correlation coefficient. Participants were randomly selected to start in the Cybex NORM® or the FysioMeter C-Station. Intra-rater reliability on the C-station was investigated by test-retest two days apart using Intraclass Correlation Coefficient (ICC). All testing involved isometric maximal force of the soleus muscle with the knee at 90 degrees flexion. RESULTS: 40 healthy university students were recruited for the validity part, while 65 healthy university students were recruited for the reliability part of the study. The mean peak torque on the IKD was 198.55Nm (SD 94.45) versus 1443.88 (412.82)N on the C-Station. The results of the Pearson correlation revealed an r-value of r = 0.72 with a 95%CI 0.52-0.84. The test re-test reliability was calculated as an ICC of 0.91 with a (95%CI 0.86-0.94). CONCLUSIONS: The C-Station by Fysiometer appears to provide valid measures and have excellent reliability for Plantar flexor isometric strength. It would appear suitable for both clinical and research work.

A mixed methods study of age at diagnosis and diagnostic odyssey for Duchenne muscular dystrophy.

The delayed diagnosis of Duchenne muscular dystrophy (DMD) may be an ongoing problem internationally. We aimed to ascertain age at diagnosis and explore parents' experiences of the diagnosis of DMD in Australia. Using mixed methods, data were collected from laboratory and clinical record audits of testing for DMD in Victoria and Tasmania, interviews and a national survey of parents regarding their experiences from first noticing symptoms to receiving a diagnosis. The audits revealed that the median age at diagnosis for DMD was 5 years (n=49 during 2005-2010); this age had not changed substantially over this period. Fourteen parents interviewed reported age at diagnosis ranging from 2 to 8 years with a 6 month to 4 year delay between initial concerns about their child's development and receiving the DMD diagnosis. Sixty-two survey respondents reported the median age at diagnosis was 3 years and 9 months, while the median age when symptoms were noticed was 2 years and 9 months. Parents experienced many emotions in their search for a diagnosis and consulted with a wide range of health professionals. Half the survey respondents felt that their child could have been diagnosed earlier. Despite advances in testing technologies and increasing awareness of DMD, the age at diagnosis has remained constant in Australia. This mixed methods study shows that this diagnostic delay continues to have a negative impact on parents' experiences, places families at risk of having a second affected child and may have a deleterious effect on affected children's treatment.