Crocker Joanna C, Beecham Emma, Kelly Paula, Dinsdale Andrew P, Hemsley June, Jones Louise, Bluebond-Langner Myra
Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK Health Experiences Institute, University of Oxford, Oxford, UK.
Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital, UCL Institute of Child Health, London, UK Marie Curie Palliative Care Research Unit, UCL Division of Psychiatry, London, UK.
Palliat Med. 2015 Mar;29(3):231-40. doi: 10.1177/0269216314560803. Epub 2014 Dec 17.
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.
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).
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.
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).
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.
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.
招募儿童姑息治疗研究对象具有挑战性，临床医生对符合条件的家庭发出邀请的比例很低。这对样本特征的影响尚不清楚。
采用混合方法，调查在一项关于家长预立医疗计划（ACP）体验的访谈研究中，符合条件的家庭未被邀请的情况及随之产生的选择偏倚。
我们使用（1）邀请阶段与临床医生讨论的现场记录，以及（2）服务临床数据库中的匿名信息，研究临床医生邀请和未邀请参与研究的符合条件家庭之间的差异。
如果孩子正在接受英国一家三级姑息治疗服务机构的治疗（A组；N = 519），或者在接受该服务机构治疗6至10个月后已经死亡（B组；N = 73），这些家庭有资格参与ACP研究。
ACP研究未被邀请的比例很高。A组共有28个（5.4%）家庭和B组21个（28.8%）家庭（p < 0.0005）被邀请。家庭与临床医生的关系似乎是两组中与邀请在性质上相关的关键因素。在A组中，与家庭的非工作时间联系在统计学上与邀请相关（调整后的优势比为5.46（95%置信区间2.13 - 14.00）；p < 0.0005）。定性研究结果还表明，临床医生对家庭幸福状况、情况、特征、与临床医生的互动以及对邀请的预期反应的看法会影响邀请。
我们发现了可能使研究结果产生偏差的选择性邀请做法的证据。在姑息治疗研究中应考虑、评估并报告未被邀请和选择偏倚的情况。
