ObjectiveDespite 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.DesignCross-sectional analysis of national survey data.SettingInpatients aged 8–15 years in eligible National Health Service hospitals, July–September 2014.Participants6204 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 measuresPain relief, involvement, quality of staff communication, perceived safety, ward environment, overall experience.AnalysesSingle-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.ResultsThe 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)).ConclusionsIncluding CYP (8–15 years) in patient experience surveys is feasible and enhances what is known from parents’ responses.
Patient experience of and satisfaction with health-care services is increasingly being used to evaluate and guide health-care provision. A recent systematic review failed to identify a validated method of measuring patient satisfaction in sexually transmitted infection (STI) clinics. The aim of this study was to design and validate a specific STI clinic patient satisfaction survey that could be used as a patient-derived outcome measure. Key themes of importance to patients were identified from a recent systematic review of STI clinic patient satisfaction surveys. Semi-structured interviews were performed with patients attending a sexual health clinic to further refine these themes, and then used to compile a patient questionnaire. Cognitive testing was used to provide face validity for the questionnaire design, layout and wording. The questionnaire was further reviewed and revised by the research team prior to being piloted over a five-week period. Five key patient themes were incorporated into the questionnaire and the pilot phase included responses from 936 patients. The completion rate for individual items and the whole questionnaire (95% [885/936]) was high. Internal consistency and validity also scored highly.
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 age 8-16 years; "Your Child's 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/carersResults: 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% reported ≥1 allergic condition (food allergy/eczema/hayfever/asthma), 62% of patients required multiple visits before receiving final diagnosis. Overall, patient experience was good for communication with patient/parent, competence, confidence in ability and 73% felt looked after "very well", 23% "quite well". Areas for improvement included communication with nurseries/schools, more information on side-effects, allergic conditions, allergen/irritant-avoidance. Allergy care in primary/emergency caresettings was associated with higher problem-scores (worse experience) than in specialist clinics. 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 Allergic conditions affect up to a third of children in the United Kingdom at some point during childhood making them the most common chronic childhood ailment(1). Many children suffer from multiple allergic co-morbidities, such as eczema, asthma, food allergies and hayfever. Access to specialist allergy care is difficult due to under-provision of services, as outlined in successive national reports(2-5). Once accessed, there is evidence of considerable variability in the quality of allergy care, which is likely to negatively impact on clinical outcomes, patients' experiences and safety(6, 7).In response, the Department of Health commissioned the Royal College of Paediatrics and Child Health (RCPCH) to define care-pathways for children with allergic conditions, including the development of allergy-specific Patient Reported Experience Measures (PREMs)(8).PREMs allow patients to report on their experience of care rather than health outcomes (Patient Reported Outcome Measures, PROMs, e.g. ...
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