Medical follow-up visits in adults 5-25 years after treatment for childhood acute leukaemia, lymphoma or Wilms' tumour

• Published in: Acta Paediatrica 2006-08, Vol.95 (8), p.922-928
• Main Authors: Arvidson, Johan, Söderhäll, Stefan, Eksborg, Staffan, Björk, Olle, Kreuger, Anders
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Adults; Biological and medical sciences; Child; Child, Preschool; childhood cancer; Female; Follow-Up Studies; General aspects; Health Care Surveys; Health Services - utilization; Hematologic and hematopoietic diseases; Humans; Infant; Kidney Neoplasms - complications; Kidney Neoplasms - therapy; Kidneys; Leukemia - complications; Leukemia - therapy; Leukemias. Malignant lymphomas. Malignant reticulosis. Myelofibrosis; long-term survivors; Lymphoma - complications; Lymphoma - therapy; Male; Medical sciences; MEDICIN; Medicin och hälsovetenskap; MEDICINE; Needs Assessment; Nephrology. Urinary tract diseases; Patient Satisfaction; Sweden; Time Factors; Tumors of the urinary system; utilization of healthcare; Wilms Tumor - complications; Wilms Tumor - therapy
• ISSN: 0803-5253; 1651-2227; 1651-2227
• DOI: 10.1080/08035250600752441

Aim: One aspect of organizing medical follow‐up for adult survivors of childhood cancer is to determine to what extent the former patient experiences a need for health services. In the present paper, we studied how the healthcare needs, both subjectively and objectively, were fulfilled for our former patients. Methods: 335 survivors over 18 y of age, with a follow‐up time of more than 5 y after completion of therapy, were sent a questionnaire probing their present use of health services. Results: The response rate was 73%. A majority (60%) of the survivors had no regular follow‐up visits, and 42% of these reported that they missed not having one. More than one third were thus far dissatisfied with the follow‐up programme. Only 3% of those who had regular follow‐ups found them “unnecessary”. Complaints subjectively related to their diseases or treatments were reported by 47%. Out of all responders, 34% did not miss having regular follow‐up visits. Neither perceived disease‐related complaints nor radiation therapy was a predictor for having a scheduled follow‐up visit. Conclusion: In the absence of a long‐term follow‐up programme, many survivors were not receiving proper medical healthcare, whether from their perspective or from a professional one.