Dixon-Woods M, Findlay M, Young B, Cox H, Heney D
Department of Epidemiology and Public Health, University of Leicester, UK.
Lancet. 2001 Mar 3;357(9257):670-4. doi: 10.1016/S0140-6736(00)04130-1.
Quick diagnosis and treatment of cancers is a UK government priority. However, the process of arriving at a diagnosis of childhood cancer has been neglected in comparison with the attention given to cancers in adults. We investigated parents' narratives about the period before their child's diagnosis.
We undertook semistructured interviews with 20 parents whose children (aged 4-18 years) had a confirmed diagnosis of cancer or brain tumour. All interviews were recorded and fully transcribed. Dates of consultations and investigations were noted from children's medical records. Data were analysed by the constant comparison method.
The time before diagnosis is very significant for parents and might affect their adaptation and reaction to their child's diagnosis. Parents were first alerted to their child's illness by a range of signs and symptoms, and by behavioural and affective changes. These early symptoms were often vague, non-specific, and common, and some older children were reluctant to disclose symptoms. Ten families' accounts of this period before diagnosis included a dispute with doctors. Disagreements between parents and doctors about the seriousness of children's symptoms and the need for investigations occurred in both primary and secondary care. Some parents felt that doctors discounted their special knowledge of their child.
Parents' accounts offer valuable insights into their experiences of obtaining a diagnosis of childhood cancer and into possible sources of delays in this complex process. If delays are to be avoided or reduced, attention must be given to the different roles of parents, children, general practitioners, hospital specialists, and type of cancer. Our findings have important implications for policy, practice, and research, and for the management of childhood illnesses.
癌症的快速诊断和治疗是英国政府的一项优先事项。然而，与对成人癌症的关注相比，儿童癌症的诊断过程一直被忽视。我们调查了家长们关于孩子确诊前这段时期的叙述。
我们对20位家长进行了半结构化访谈，他们的孩子（年龄在4至18岁之间）已确诊患有癌症或脑瘤。所有访谈均进行了录音并完整转录。从儿童病历中记录了会诊和检查的日期。采用持续比较法对数据进行分析。
确诊前的这段时间对家长来说非常重要，可能会影响他们对孩子确诊的适应和反应。家长们首先通过一系列体征和症状以及行为和情感变化察觉到孩子的病情。这些早期症状往往模糊、不具特异性且常见，一些年龄较大的孩子不愿透露症状。十个家庭关于确诊前这段时期的叙述中包括与医生的争执。在初级和二级医疗保健中，家长和医生在孩子症状的严重性以及检查的必要性方面存在分歧。一些家长觉得医生忽视了他们对自己孩子的特殊了解。
家长的叙述为了解他们获得儿童癌症诊断的经历以及这一复杂过程中可能出现延误的原因提供了宝贵的见解。若要避免或减少延误，必须关注家长、孩子、全科医生、医院专科医生的不同角色以及癌症类型。我们的研究结果对政策、实践、研究以及儿童疾病的管理具有重要意义。
