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Table 4 Summary of findings from other assessments piloted

From: Feasibility trial of an early therapy in perinatal stroke (eTIPS)

Assessment

Findings

Implications for future trial

HAI

Assessments generally enjoyed by infants and perceived as valuable by parents in demonstrating their infant’s abilities, identifying challenges to work on and modelling strategies.

Valuable assessment, worth the training required for therapists to undertake and score. Resource implications: need to video and upload assessments for later scoring.

PSOM

Useful clinical proforma though in the context of the other data collected (HAI, GMs and AIMS), the motor summary scores were not required, and the cognitive, behavioural and language scores were more suited to older infants.

Useful for summarising longer term outcomes and for comparison with other infants with PS/HPI. The HINE would be another option.

GM

Straightforward to undertake, video record and score. Two infants showed fidgety movements (predictive of good motor outcome) by 4 m which were not seen at 3 m.

Provides early indicator of likely normal vs. abnormal motor outcome. For centralised scoring, video upload to a central server is required.

Accelerometry

Time-consuming and at times technically challenging; one parent uncomfortable with use. Analysis complex.

Valuable exploratory data but current approach unsuitable for RCT given resources required.

AIMS

Easy to obtain and score. AIMS at 6 m were 25th centile or above for all except one TD term infant (10–25 centile) but lower for preterm TD and PS/HPI infants (one exception with small cortical infarct and good outcome).

Useful to describe early gross motor function which impacts hand use. However, abnormal motor patterns seen in infants with evolving neurology could distort scores.

WEBWMS

All returned questionnaires were fully completed. Two mothers of TD infants at baseline and two at 6 m failed to return questionnaires. Questionnaires from fathers were less frequently returned (3 TD missing at start and end; 3 PS/HPI missing at end). Change scores did not suggest any adverse effect of eTIPS on parental mental wellbeing: PS/HPI maternal change score 2.2 (95% CI -3.9 to 8.3; n = 10). TD maternal change score − 3.2 (95% CI -9.4 to 3.0, n = 10); higher scores represent better mental wellbeing.

Questionnaire return rate optimised by sending out forms prior to visit, bringing spare forms and collecting them during the visit. Extra vigilance required to obtain questionnaires from fathers.

PSOC

Questionnaire return rate same as WEBWMS but multiple non-completed items which qualitative data suggested were due to reluctance to answer questions perceived as sensitive, as well as initial failure of some fathers to complete the reverse of the form.

An alternative and positively framed questionnaire addressing aspects of parental sense of competence could be used, e.g. Family Empowerment Scale.