Department of Pediatrics, Willem-Alexander Children's Hospital, Leiden University Medical Center, Division of Stem Cell Transplantation, Leiden, The Netherlands.
Department of Pediatrics, Willem-Alexander Children's Hospital, Leiden University Medical Center, Division of Psychosocial Care, Leiden, The Netherlands.
Health Expect. 2022 Oct;25(5):2462-2470. doi: 10.1111/hex.13565. Epub 2022 Jul 29.
An understanding of the long-term psychosocial impact of paediatric haematopoietic stem cell transplantation (HSCT) for nonmalignant diseases is needed to optimize pre-HSCT counselling, supportive care and long-term follow-up programmes after HSCT for this group of patients and caregivers.
This qualitative study included 14 patients who underwent transplantation for a nonmalignant disease during childhood. In-depth interviews were held online to explore patients' perspectives on the long-term psychosocial impact of HSCT on their lives. The results were analysed based on the Grounded Theory approach.
Patients' median age at the time of the interview was 19 years (range: 14-49), and the median years after HSCT was 12 years (range: 3-33). Four main themes were identified: (1) doing okay, (2) experiencing persistent involvement with healthcare services, (3) influence on relationships with loved ones and (4) impact on the patient's life course. Subthemes extracted were doing okay, feeling of being cured, health limitations, sense of vulnerability, ongoing connection to the hospital, acceptance, friendship, family relations, development of own identity, not taking life for granted, social development, impact on (school) career and thinking about the future.
Patients reported active coping strategies and resilience after this high-impact treatment. The data highlight the need for patient-adjusted supportive care, indicating more need for supportive care in the long-term outpatient clinic.
This study included patients as participants. Caregivers were approached if patients were below a certain age. Additionally, preliminary results were presented during a patient conference day.
为了优化这组患者和照护者在移植前咨询、支持性护理和移植后的长期随访计划，需要了解儿科造血干细胞移植（HSCT）治疗非恶性疾病的长期心理社会影响。
本项定性研究纳入了 14 名在儿童时期因非恶性疾病而接受移植的患者。通过在线深入访谈，探讨了患者对 HSCT 对其生活的长期心理社会影响的看法。结果基于扎根理论方法进行分析。
患者接受访谈时的中位年龄为 19 岁（范围：14-49 岁），HSCT 后中位时间为 12 年（范围：3-33 年）。确定了四个主要主题：（1）情况尚可，（2）持续需要医疗服务，（3）对与亲人关系的影响，（4）对患者生活轨迹的影响。提取的子主题包括情况尚可、感觉被治愈、健康受限、脆弱感、与医院的持续联系、接受、友谊、家庭关系、发展自我认同、不把生命视为理所当然、社会发展、对（学业）职业的影响和对未来的思考。
患者报告在经历了这种高影响的治疗后，采取了积极的应对策略和韧性。这些数据强调了需要根据患者情况调整支持性护理，表明在长期门诊中更需要支持性护理。
本研究将患者作为参与者纳入其中。如果患者年龄较小，则会联系其照护者。此外，初步结果还在患者会议日进行了展示。
