Aim To investigate the effects of home‐based early intervention in children with severe visual impairment (SVI) using the Developmental Journal for babies and young children with visual impairment (DJVI). Method A longitudinal observational study was undertaken with a national cohort (OPTIMUM) of infants with congenital disorders of the peripheral visual system (CDPVS) and profound‐SVI; and followed up after 12 months and 24 months. Intervention was categorized according to the practitioner diary records of their usual practice over 12 months from baseline comparing those receiving the DJVI and those receiving ‘Other Support’. Outcome measures of cognition and language, behaviour difficulties, parenting stress, and satisfaction with parent–practitioner partnership were collected. Results In the 54 children (26 males, 28 females, baseline mean age 13.5mo, SD 2.3mo, range 8–17mo) with ‘total’ CDPVS (including 16 ‘complex’ and 38 ‘simple’ with or without known brain disorder respectively), linear mixed effects pointed towards acceleration in sensorimotor understanding and expressive language especially in the ‘simple’ subsample (11.72 developmental quotient, 95% confidence interval −1.17 to 24.61, p>0.05) in those receiving the DJVI. Vision level also predicted outcomes (p<0.05). The DJVI group showed improvements in behavioural withdrawal (η2=0.20, p=0.02, ‘simple’) and parenting stress (d=0.78, d=0.92, p=0.02 total and ‘simple’ respectively) and perceived practitioner–parent relationship (η2=0.16, p=0.01). Interpretation Infants and young children with visual impairment receiving home‐based early intervention using the DJVI with a structured developmental approach had better outcomes than those receiving ‘other’ home‐based early interventions. Moderate to large effect improvements were found in child cognition and language, behaviour and parenting stress and the perceived practitioner‐parent relationship, although cognition did not reach 5% significance level. What this paper adds Early intervention using the Developmental Journal for babies and young children with visual impairment was associated with enhanced developmental outcomes compared to other approaches. Improvements were also found in child behaviour, parenting stress, and perceived parent practitioner outcomes. Type and complexity of visual impairment also influenced outcomes.

The art of communication at times seems at odds with the science of medicine. Poor communication is associated with risks for patient and physician. Communication skills are highly relevant for haematologists and are associated with increased physician and patient satisfaction, positive psychosocial outcomes and possible health outcomes. Medical communication training has recently become widespread but is largely restricted to junior medical professionals. In haematology, the proliferation of high quality communication skills is low and there are few interventions catering for the required skillset. A review identified five applicable interventions for haematologists. There is variation in intervention length and structure, and most studies measure targeted skill fidelity rather than patient outcomes. Work on motivation and empowerment holds potential for haematological conditions, but is largely absent from care. This review highlights the need for new interventions for haematologists which focus on producing and maintaining positive patient outcomes.

There are many widely used, validated patient reported outcome measures for physical and mental health. However, capturing outcomes from young people living with chronic health conditions presents a challenge, needing to take the complex interplay of physical and mental health into consideration. The authors found that regularly used outcome measures for child and adolescent emotional well-being in paediatric settings largely fall into two groups: paediatric quality of life and child and adolescent mental health measures. The applicability and potential for use of these measures within this context is discussed. Whilst offering some utility, neither approach leaves sufficient space for young people’s individual experiences of illness and treatment. The scope of using alternative qualitative approaches that capture the rich stories and experiences of young people living with chronic illnesses is considered.

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