Joanna Crocker

Inviting parents to take part in paediatric palliative care research: A mixed-methods examination of selection bias:

Background: Recruitment to paediatric palliative care research is challenging, with high rates of non-invitation of eligible families by clinicians. The impact on sample characteristics is unknown. Aim: To investigate, using mixed methods, non-invitation of eligible families and ensuing selection bias in an interview study about parents’ experiences of advance care planning (ACP). Design: We examined differences between eligible families invited and not invited to participate by clinicians using (1) field notes of discussions with clinicians during the invitation phase and (2) anonymised information from the service’s clinical database. Setting: Families were eligible for the ACP study if their child was receiving care from a UK-based tertiary palliative care service (Group A; N = 519) or had died 6–10 months previously having received care from the service (Group B; N = 73). Results: Rates of non-invitation to the ACP study were high. A total of 28 (5.4%) Group A families and 21 (28.8%) Group B families (p < 0.0005) were invited. Family–clinician relationship appeared to be a key factor associated qualitatively with invitation in both groups. In Group A, out-of-hours contact with family was statistically associated with invitation (adjusted odds ratio 5.46 (95% confidence interval 2.13–14.00); p < 0.0005). Qualitative findings also indicated that clinicians’ perceptions of families’ wellbeing, circumstances, characteristics, engagement with clinicians and anticipated reaction to invitation influenced invitation. Conclusion: We found evidence of selective invitation practices that could bias research findings. Non-invitation and selection bias should be considered, assessed and reported in palliative care studies.

Is it worth it? Patient and public views on the impact of their involvement in health research and its assessment: a UK-based qualitative interview study

There are mounting calls for robust, critical evaluation of the impact of patient and public involvement (PPI) in health research. However, questions remain about how to assess its impact, and whether it should be assessed at all. The debate has thus far been dominated by professionals.

Paediatric pneumonia or empyema and prior antibiotic use in primary care: a case–control study

OBJECTIVES To investigate the association between hospital presentation for paediatric pneumonia or empyema and prior antibiotic use for respiratory tract infection (RTI). METHODS Case-control study of children aged 6 months to 16 years presenting to hospital with radiographic evidence of pneumonia or empyema and a history of general practitioner (GP) consultation for the index illness. Cases were recruited from seven hospitals in South Wales between October 2008 and December 2009. Controls were children from the same age group who were diagnosed with an uncomplicated RTI in general practice in the same area and at a similar time of year. Primary data were collected from carers by a self-complete questionnaire, with a subsample compared against general practice records. RESULTS We recruited 89 eligible cases and 166 eligible controls. Cases were less likely than controls to have been prescribed antibiotics at the first GP consultation for the index illness [odds ratio (OR) 0.53; 95% confidence interval (95% CI) 0.31-0.90]. Stratified analyses revealed that this association was limited to children who consulted a GP <3 days after illness onset (OR 0.23; 95% CI 0.10-0.50). Cases were also less likely to have taken antibiotics before the date of index hospital presentation, but this finding was not statistically significant after adjustment for confounding factors (adjusted OR 0.84; 95% CI 0.47-1.49). CONCLUSIONS Antibiotics prescribed at the first GP consultation for an RTI may protect against subsequent hospital presentation for pneumonia or empyema in some children. Given the strong rationale against unnecessary antibiotic prescribing, further research is needed to identify which children are most likely to benefit from early antibiotic treatment.

Priorities for methodological research on patient and public involvement in clinical trials: A modified Delphi process.

Despite increasing international interest, there is a lack of evidence about the most efficient, effective and acceptable ways to implement patient and public involvement (PPI) in clinical trials.

Does hearing the patient perspective improve consultation skills in examinations? An exploratory randomized controlled trial in medical undergraduate education

Abstract Purpose: Medical education increasingly includes patient perspectives, but few studies look at the impact on students’ proficiency in standard examinations. We explored students’ exam performance after viewing video of patients’ experiences. Methods: Eighty-eight medical students were randomized to one of two e-learning modules. The experimental group saw video clips of patients describing their colposcopy, while the control group viewed a clinician describing the procedure. Students then completed a Multiple Choice Questionnaire (MCQ) and were assessed by a blinded clinical examiner in an Objective Structured Clinical Examination (OSCE) with a blinded simulated patient (SP). The SP scored students using the Doctors’ Interpersonal Skills Questionnaire (DISQ). Students rated the module’s effect on their skills and confidence. Regression analyses were used to compare the effect of the two modules on these outcomes, adjusting for gender and graduate entry. Results: The experimental group performed better in the OSCE than the control group (odds ratio 2.7 [95%CI 1.2–6.1]; p = 0.016). They also reported significantly more confidence in key areas, including comfort with patients’ emotions (odds ratio 6.4 [95%CI 2.7–14.9]; p < 0.0005). There were no other significant differences. Conclusion: Teaching that included recorded elements of real patient experience significantly improved students’ examination performance and confidence.

Keeping all options open: Parents’ approaches to advance care planning

Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life‐limiting condition (LLC). However, most families have little knowledge or experience of ACP.

Developing a patient and public involvement intervention to enhance recruitment and retention in surgical trials (PIRRIST): study protocol

Background and aims Slow recruitment and poor retention are common challenges to the successful delivery of clinical trials, particularly surgical trials. Patient and public involvement (PPI) in designing and conducting clinical trials has the potential to enhance recruitment and retention but there have been few attempts at rigorous evaluation. The aim of PIRRIST is to develop a PPI intervention that improves recruitment and/or retention in surgical trials.

Assessing the impact of patient and public involvement on recruitment and retention in clinical trials: a systematic review

Background and aims Patient and public involvement (PPI) is research being carried out ‘with’ or ‘by’ patients and/or members of the public rather than ‘to’, ‘about’ or ‘for’ them. Some evidence suggests that PPI in clinical trials may improve recruitment and retention. We undertook a systematic review to determine whether or not this is confirmed by quantitative evidence. We also explored whether the impact on recruitment and retention varies according to context and PPI method.

Why some children hospitalized for pneumonia do not consult with a general practitioner before the day of hospitalization

Abstract Background: Early consultation in primary care may provide an opportunity for early intervention in children developing pneumonia, but little is known about why some children do not consult a general practitioner (GP) before hospitalization. Objectives: To identify differences between children who consulted a GP and children who did not consult a GP before the day of hospital presentation with pneumonia or empyema. Methods: Carers of children aged six months to 16 years presenting to hospital with pneumonia or empyema completed a questionnaire, with a subset participating in an interview to identify physical, organizational and psychological barriers to consultation. Responses from those who had consulted a GP before the day of hospital presentation were compared with those who had not on a range of medical, social and environmental variables. Results: Fifty seven (38%) of 151 participants had not consulted a GP before the day of hospital presentation. On multivariate analysis, illness duration ≥ 3 days (odds ratio [OR] 4.36, 95% confidence interval [CI]: 1.67–11.39), prior antibiotic use (OR: 10.35, 95% CI: 2.16–49.55) and home ownership (OR: 3.17, 95% CI: 1.07–9.37) were significantly associated with early GP consultation (P < 0.05). Interviews with 28 carers whose children had not seen a GP before the day of presentation revealed that most had not considered it and/or did not think their childs initial symptoms were serious or unusual; 11 (39.3%) had considered consulting a GP but reported barriers to access. Conclusion: Lack of early GP consultation was strongly associated with rapid evolution of pneumonia.

Carers' perspectives on the presentation of community-acquired pneumonia and empyema in children: a case series.

Objective To describe carers’ perceptions of the development and presentation of community-acquired pneumonia or empyema in their children. Design Case series. Setting Seven hospitals with paediatric inpatient units in South Wales, UK. Participants Carers of 79 children aged 6 months to 16 years assessed in hospital between October 2008 and September 2009 with radiographic, community-acquired pneumonia or empyema. Methods Carers were recruited in hospital and participated in a structured face-to-face or telephone interview about the history and presenting features of their childrens illnesses. Responses to open questions were initially coded very finely and then grouped into common themes. Cases were classified into two age groups: 3 or more years and under 3 years. Results The reported median duration of illness from onset until the index hospital presentation was 4 days (IQR 2–9 days). Pain in the torso was reported in 84% of cases aged 3 or more years and was the most common cause for carer concern in this age group. According to carer accounts, clinicians sometimes misjudged the origin of this pain. Almost all carers reported something unusual about the index illness that had particularly concerned them—mostly non-specific physical symptoms and behavioural changes. Conclusions Pain in the torso and carer concerns about unusual symptoms in their child may provide valuable additional information in a clinicians assessment of the risk of pneumonia in primary care. Further research is needed to confirm the diagnostic value of these features.