“Improving to where?”: treatment-related health risks and perceptions of the future among adolescents and young adults after hematopoietic cell transplantation

Brauer, Eden R.; Pieters, Huibrie C.; Ganz, Patricia A.; Landier, Wendy; Pavlish, Carol; Heilemann, MarySue V.

doi:10.1007/s00520-018-4350-7

Cited by 1 publication

(4 citation statements)

References 39 publications

(47 reference statements)

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“…A study on cancer patients who sought psychotherapeutic help after HSCT found that patients felt different, lost contact with friends and showed family dependency, 26 which is similar to our results. In contrast to what was reported in the former studies, the patients in our study did not experience symptoms of anxiety, depression or ask themselves ‘what if I didn't have received the HSCT’ 5,7,24 . These complaints may be less common in patients with nonmalignant disorders, or may not have been experienced or expressed by the patients who participated in the interviews.…”

Section: Discussioncontrasting

confidence: 96%

“…These patients also experienced social problems, social withdrawal, physical problems, changes in family relations, fear of disease recurrence, the desire to been seen as normal and impact on (school) career. Other similarities are the acceptance of serious side effects, ongoing use of medication, regular hospital check‐ups and the feeling of being cured after HSCT 5,8,24,25 . The latter has also been reported among sickle cell disease patients after HSCT 12 .…”

Section: Discussionmentioning

confidence: 82%

“…Other similarities are the acceptance of serious side effects, ongoing use of medication, regular hospital check-ups and the feeling of being cured after HSCT. 5,8,24,25 The latter has also been reported among sickle cell disease patients after HSCT. 12 A study on cancer patients who sought psychotherapeutic help after HSCT found that patients felt different, lost contact with friends and showed family dependency, 26 which is similar to our results.…”

Section: Thinking About the Futurementioning

confidence: 79%

“…In contrast to what was reported in the former studies, the patients in our study did not experience symptoms of anxiety, depression or ask themselves ‘what if I didn't have received the HSCT’. 5 , 7 , 24 These complaints may be less common in patients with nonmalignant disorders, or may not have been experienced or expressed by the patients who participated in the interviews.…”

Section: Discussionmentioning

confidence: 99%

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Exploring the long‐term psychosocial impact of paediatric haematopoietic stem cell transplantation for nonmalignant diseases

Bense

Welle

Mekelenkamp

et al. 2022

Health Expectations

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Introduction: 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.Methods: 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.Results: 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.Conclusions: Patients reported active coping strategies and resilience after this highimpact treatment. The data highlight the need for patient-adjusted supportive care, indicating more need for supportive care in the long-term outpatient clinic.Patient Contribution: 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.

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Section: Discussioncontrasting

confidence: 96%

Section: Discussionmentioning

confidence: 82%