A Tallett

New patient-reported experience measure for children with allergic disease: development, validation and results from integrated care

Objectives To develop and validate a new allergy-specific patient-reported experience measure (PREM) for children and their parents, and to collect feedback in an integrated care setting. Design Two allergy-specific PREMs were produced using focus groups, cognitive testing, two prospective validation studies (collaboration: Royal College of Paediatrics and Child Health, Picker Institute Europe, Imperial College/London): ‘Your Allergy Care’, for children aged 8–16 years; ‘Your Childs Allergy Care’, for parents of children aged 0–7 years. Setting Community event, primary/secondary/tertiary allergy care settings. Main outcome measures Performance of PREMs in validation study; reported experience of allergy care. Participants 687 children with allergic conditions and their parents/carers. Results In total, 687 questionnaires were completed; 503/687 (253 child; 250 parent) for the final survey. In both surveys, demographic variations were not associated with differences in results. Although 71% of patients reported one or more allergic conditions (food allergy/eczema/hay fever/asthma), 62% required multiple visits before receiving final diagnosis. Overall, patient experience was good for communication with patient/parent, competence and confidence in ability, and 73% felt looked after ‘very well’ and 23% ‘quite well’. Areas for improvement included communication with nurseries/schools, more information on side effects, allergic conditions and allergen/irritant avoidance. Allergy care in primary/emergency care settings was associated with higher problem-scores (worse experience) than in specialist clinics. Conclusions These new PREMs will allow allergy-specific patient experience reporting for children and parents and help identification of priority areas for improvement and commissioning of care. Efforts towards better allergy care provision must be targeted at primary and emergency care settings and underpinned by improving communication between healthcare providers and the community.

Children and young people’s versus parents’ responses in an English national inpatient survey

Objective Despite growing interest in children and young people’s (CYP) perspectives on healthcare, they continue to be excluded from many patient experience surveys. This study investigated the feasibility of, and additional information gained by, measuring CYP experiences of a recent hospital admission. Design Cross-sectional analysis of national survey data. Setting Inpatients aged 8–15 years in eligible National Health Service hospitals, July–September 2014. Participants 6204 parents/carers completed the parent section of the survey. The CYP section of the survey was completed by CYP themselves (n=3592), parents (n=849) or jointly (n=1763). Main outcome measures Pain relief, involvement, quality of staff communication, perceived safety, ward environment, overall experience. Analyses Single-measures intraclass correlations (ICCs) were used to assess the concordance between CYP and parent responses about the same inpatient episode. Multilevel logistic regression models, adjusted for individual characteristics, were used to compare the odds of positive responses when the CYP section of the survey was completed by parents, by CYP themselves or jointly. Results The CYP section of the survey was completed independently by 57.8% of CYP. Agreement between CYP and parent responses was reasonably good for pain relief (ICC=0.61 (95% CI 0.58 to 0.63)) and overall experience (ICC=0.70 (95% CI 0.68 to 0.72)), but much lower for questions comparing professionals’ communication with CYP and with their parents (ICC range=0.28 (95% CI 0.24 to 0.32) to 0.51 (95% CI 0.47 to 0.54)). In the regression models, CYP were significantly less likely than parents to report feeling safe (adjusted OR (AOR)=0.54 (95% CI 0.38 to 0.76)), involvement in decisions (AOR=0.66 (95% CI 0.46 to 0.94)) or adequate privacy (AOR=0.68 (95% CI 0.52 to 0.89)). Conclusions Including CYP (8–15 years) in patient experience surveys is feasible and enhances what is known from parents’ responses.

G223(P) Parents’ experiences of using NHS 111 as entry point to child’s care pathway: Piloting a new patient reported experience measure

Aims The NHS 111 was introduced to increase efficiency in directing service-users to appropriate urgent-care-services and reduce strain on accident and emergency departments. Patient experience is widely recognised as a key indicator of health care quality, thus it is essential to investigate service-user experiences to understand how they can be improved. Since parents and children are amongst the highest users of urgent-care-services, this study aimed to investigate experiences of parents using NHS 111 on behalf of their child in addition to assessing what factors may influence their decision to follow advice and explore whether the most appropriate care pathway was followed. Methods A Patient Reported Experience Measure (PREM) was developed and tested with parents who recently called NHS 111 on behalf of their child under 16 years for one of four conditions: fever; constipation; diarrhoea/vomiting; or breathlessness. The PREM was piloted employing a telephone survey methodology with parents who called NHS 111 in North West London between March–June 2015. 1000 surveys were completed in a four-week fieldwork period. Results Data revealed positive experiences of the service overall with most parents stating they got what they needed and would use the service again. However, almost a quarter of parents didn’t fully have confidence and trust in the first call handler which may have impacted their decision to follow the advice given (see Figure 1). Countering this, parents who were given a thorough explanation of why the advice was appropriate reported having more confidence and trust in the call handler (see Figure 2).Abstract G223(P) Figure 1 Proportion of parents who followed the advice, by level of confidence trust (n=960)Abstract G223(P) Figure 2 Respondents’ confidence and trust in first person they spoke to, by whether they were clearly told the advice or action taken by NHS 111 was the right thing to do (n=974) An “experience of the call” composite score revealed associations between a positive experience of the call and (i) parents feeling advice/action was right, and (ii) following the advice. This indicates that being listened to, being involved in decisions, and having confidence could impact parents’ decision to follow the advice and thus the effectiveness of the service. Conclusion The PREM proved a useful tool to understand parents experiences of using NHS 111 as well as providing evidence that their overall experience of the call could influence decisions to follow advice and ultimately access the most appropriate care pathway for their child’s needs.

Patient-reported experience measure in sickle cell disease

Objectives To develop patient-reported experience measure surveys for patients with sickle cell disease (SCD) to understand their healthcare and lived experience in the UK and for their use in future to inform healthcare service development. Design Picker methodology was used as follows: (1) qualitative scoping by focus group discussions; (2) questionnaire development through stakeholder consultations; (3) construct validation of questionnaires through cognitive testing; and (4) further assessment of construct validity by a nationwide pilot survey. Setting Patients with SCD and their carers were eligible. Focus group discussions took place in non-hospital settings, arranged out of hours. Cognitive testing took place in specialist sickle cell clinics. The pilot survey was available to UK participants only and was administered through web-based questionnaires, face-to face completion and in sickle cell community events. Participants Thirty-three patients and carers took part in the focus groups, 21 participants undertook cognitive testing and 722 respondents completed the pilot survey. Results Findings highlighted a widespread prevalence of poor knowledge about SCD among healthcare providers and the public. Poorer experience of care was present in the emergency setting compared with planned care, of which lack of timely provision of pain relief was of concern. Adolescents and young people reported significantly poorer experience of care in several domains compared with children or adults. Conclusions The new surveys functioned well, with good evidence of validity, and were accessible to the SCD patient population, supporting their future use in assessing patient experience to inform service delivery and improvements in care quality.

G142(P) Using a Child-Friendly Survey to Obtain Feedback About the Hospital Experience of Young Inpatients

Aims The research aimed to obtain feedback from young hospital inpatients in a manner appropriate for their age and ability, to help NHS Trusts identify how they could make improvements in their paediatric services. Methods A paediatric inpatient questionnaire was designed and piloted in 2010, focusing on the aspects of care that children and young people say are most important. The self-completion questionnaire is aimed at children (and their parents) aged 0–16 years, and is offered annually to NHS Trusts in England. 15 Trusts participated in the 2012 survey, which sampled patients discharged from hospital during February 2012. Questionnaires were posted to the home addresses of 850 patients/parents at each Trust, with two reminders being mailed to non-responders. Results The overall response rate to the survey across all participating trusts was 34% and demonstrated a high degree of child involvement and completion. Children and their parents reported room for improvement with the amount of privacy they were given in hospital, involvement in decisions and the quality of hospital food. In contrast, NHS Trusts performed well on hospital cleanliness and overnight facilities for parents. Children had a preference to stay on a ward with others of a similar age, whereas same-sex wards were less important. The survey also revealed some differences in the views of parents and children, for example children were less likely than parents to feel that the hospital ward was well suited to their age group. Conclusion The survey highlighted where there was most room for improving paediatric inpatient experience. The research demonstrated that children are willing and able to express their views and should be consulted about their healthcare experiences. For some question areas the views of children were shown to differ to that of parents. This emphasises the importance of speaking to children directly, and discourages using parent views alone as a basis for delivering care to children and young people.

Developing an allergy specific patient reported experience measure (PREM)

Aims To develop a Patient Reported Experience Measure (PREM) for paediatric allergy patients and their parents. The PREM will be an essential tool to audit services to identify where they are performing well and where there is room for improvement, working through a cycle of evaluation and change. This will allow patient care and experience to be improved across the RCPCH allergy care pathways. Methods An initial parent/carer allergy focused PREM was informed by the RCPCH Allergy Care Pathways key patient domains, and by an existing Picker Institute validated question bank. Three focus groups were conducted with (i) parents/carers of children with allergies; (ii) children aged 8–11 with allergies; and (iii) children and young people aged 12+ with allergies. These identified factors that are important to allergy patients and their parents/carers in terms of their healthcare. The questionnaire was refined using the findings from the focus groups. Two versions of the survey were then generated, one aimed at parents/carers of allergy patients aged 7 and under, and another for children aged 8 years + to complete themselves, with a section for their parents/carers. Both surveys were cognitively tested on 10 parents and children after which they were further refined and piloted. Results Allergy-focused PREM tools were developed. Results from the focus groups, cognitive interviews and piloting can be presented. These final version covered various aspects of the patient experience across the allergy healthcare pathways, including initial recognition of the allergy, referral and first allergy tests, emergency care, (both hospital and ambulance), management of the allergy (treatments, appointments, tests and personal management plans), and lifestyle support. Conclusion Two PREMs were developed: one for parents/carers of allergy patients under 8 years and the other for patients over 8 years and their parents/carers. It is essential that young patients and their parents/carers are consulted throughout the survey development process. Interestingly, cognitive interviewing suggested parents play a larger than expected role in the allergy care of young people. These findings should advise and inform further research on developing tools for measuring the experience of paediatric patients with chronic conditions.