Vaudre G, Trocmé N, Landman-Parker J, Maout F, Tabone M D, Tourniaire B, Gouraud F, Dollfus C, Auvrignon A, Leverger G
Service d'hématologie et d'oncologie pédiatrique, hôpital d'enfants Armand-Trousseau, Assistance publique-hôpitaux de Paris, 75012 Paris, France.
Arch Pediatr. 2005 Nov;12(11):1591-9. doi: 10.1016/j.arcped.2005.07.017. Epub 2005 Oct 10.
To evaluate how adolescents and young adults cured of acute lymphoblastic leukemia (ALL) treated during childhood have integrated the disease, and possible death related to cancer. Particularly, we have focused on experiences related to diagnosis announcement, hospitalisation and treatments and consequences on their social, psychological and somatic behaviour.
Forty-one patients cured of ALL have been enrolled in the study and answered one interview with clinical psychologist or research nurse.
Although 60% of the patients argued that they think rarely of their disease, 10% thought about it every day. Traumatic evidence was detectable in most of them. Physical pain was the most reported stress, mainly during hospitalisation (93%), as well as psychological suffering (83%). Afterwards, the mostly often-reported stress was psychological pain (61%). Sixty-six percent declared that they still experience psychological and health consequences at the time of the interview, in some cases reported as a handicap in their life. In 83% of the cases they considered themselves as cured, nevertheless fear of relapse persisted in 1/3. Ninety percent said they have a pleasant life, 56% did not like to talk about leukaemia and 70% thought they could have died. For 85%, disease has been the most important event of their life and 75% testify to repercussions of the disease on their family (family relationship changes, overprotection, siblings difficulties).
Most of these patients declared to be 'as the others' and developed life projects, but overcoming the pain experience of the disease remained difficult. This study emphasized the need for long-term continuous information and reinforces the importance of addressing treatment psychological and physical pain mainly after the initial hospitalisation period.
评估童年期接受治疗并已治愈的急性淋巴细胞白血病（ALL）青少年及青年如何面对该疾病以及与癌症相关的可能死亡情况。具体而言，我们重点关注了与诊断告知、住院及治疗相关的经历，以及这些经历对他们社会、心理和身体行为的影响。
41名ALL治愈患者参与了本研究，并接受了临床心理学家或研究护士的一次访谈。
尽管60%的患者称自己很少想起疾病，但10%的患者每天都会想到。多数患者仍留有创伤记忆。身体疼痛是最常被提及的压力源，主要出现在住院期间（93%），心理痛苦也较为常见（83%）。之后，最常被提及的压力源是心理疼痛（61%）。66%的患者表示在访谈时仍受心理和健康问题困扰，在某些情况下，这些问题被视为生活中的障碍。83%的患者认为自己已治愈，但仍有三分之一的患者担心复发。90%的患者称生活愉快，56%的患者不喜欢谈论白血病，70%的患者认为自己本可能死亡。85%的患者认为疾病是其人生中最重要的事件，75%的患者证实疾病对其家庭产生了影响（家庭关系变化、过度保护、兄弟姐妹面临困难）。
这些患者大多宣称自己“和其他人一样”并制定了人生规划，但克服疾病带来的痛苦经历仍很困难。本研究强调了长期持续提供信息的必要性，并凸显了在初始住院期之后应对治疗带来的心理和身体疼痛的重要性。
