Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies

Husson, Olga; Huijgens, Peter C.; Graaf, Winette T.A. van der

doi:10.1182/blood-2017-11-778555

Cited by 39 publications

(35 citation statements)

References 129 publications

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“…In the current study, AYA patients expressed a higher demand for information regarding body shape and sexuality issues. In addition, AYA suffering from hematologic malignancies emphasized sexual functioning and intimacy as one of the relevant issues before and after treatment (Husson et al 2018). As patients are likely to believe that sexual dysfunction and treatment-related damage on reproductive organs cannot not be treated (Bober and Varela 2012), information on these topics should be targeted especially to AYA patients.…”

Section: Nutrition Information Is An Important Topic Particularlymentioning

confidence: 99%

“…As the disease occurs in early life, AYA may experience fears of long-term effects. The HSCT experience can take them out of the mainstream of a dynamic life (Cooke et al 2011), resulting in special informational needs on topics such as education and employment, social relationship and functioning, psychological issues and end-of-life challenges (Husson et al 2018). To enable a return to daily life as soon as possible, the specific informational requirements of AYA must be addressed, as they may differ from the needs of older adult patients.…”

Section: Introductionmentioning

confidence: 99%

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Clinical, social, and psycho-oncological needs of adolescents and young adults (AYA) versus older patients following hematopoietic stem cell transplantation

Pulewka

Strauß

Hochhaus

et al. 2020

J Cancer Res Clin Oncol

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Purpose To analyze demand for information and advice as well as medical, psychological, and social needs of adolescents and young adults (AYAs) and older patients (non-AYA) after hematopoietic stem cell transplantation (HSCT). Methods A questionnaire was sent to 100 HSCT recipients comprising n = 50 AYAs (aged 19–39 years) and n = 50 non-AYAs (> 39 years). The questionnaire covered the categories: (a) patient characteristics; (b) need for advice, on medical, psychological, and social care topics; (c) medical, psychological, and social needs, and (d) preferred forms and channels of information. Results The return rate was 65%. 62.5% of patients indicated medical needs; 41.1% psychological needs, and 64.9% had needs concerning social issues. Among medical aspects, aftercare was important to both groups. Nutrition was of highest interest for AYA, while non-AYAs identified fatigue and vaccination as their most pressing concerns. Body shape/sexuality and relaxation techniques were the most common psychological issues for AYA, while coping strategies were important for both cohorts. Family, relationship and friends were of less interest in both groups. Rehabilitation and premature retirement were of highest interest for both cohorts. The preferred mode of communicating advice was one-to-one conversation in a quiet environment as opposed to informational sessions. Conclusion Despite well-established aftercare programs following HSCT, many patients describe unmet needs regarding medical, psychological, and social policy issues. AYA and non-AYA differ in informational needs after HSCT, and, therefore, age-appropriate informational materials are necessary. Particularly AYA may profit from information covering body-shape/sexuality and nutrition, while both cohorts require information covering coping strategies and aftercare.

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Section: Nutrition Information Is An Important Topic Particularlymentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Clinical, social, and psycho-oncological needs of adolescents and young adults (AYA) versus older patients following hematopoietic stem cell transplantation

Pulewka

Strauß

Hochhaus

et al. 2020

J Cancer Res Clin Oncol

View full text Add to dashboard Cite

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“…These differences may have an important effect on treatment outcomes; therefore, research focused on this specific population is warranted. However, the participation rate of AYA patients in clinical trials is lower than the rates of children and older adults [1][2][3].…”

Section: Introductionmentioning

confidence: 97%

Myeloablative Unrelated Cord Blood Transplantation in Adolescents and Young Adults with Acute Leukemia

Hayashi

Volt

Sanz

et al. 2019

Biology of Blood and Marrow Transplantation

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Outcomes for adolescents and young adults (AYAs) with leukemia differ from other age groups and are still underrepresented in clinical research. The aim of this study was to analyze outcomes of umbilical cord blood transplant (UCBT) in AYAs with acute leukemia reported to Eurocord/European Society for Blood and Marrow Transplantation. Patients (N = 504) had acute lymphoblastic (59%) or myeloid leukemia (41%), were aged 15 to 25 years, and received UCBT after myeloablative conditioning regimens between 2004 and 2016. The primary endpoint was 3-year overall survival (OS). Median follow-up was 3.9 years. Transplant was single in 58% and double UCBT in 42%. Three-year OS was 45% and leukemia free survival (LFS) was 41%. Cumulative incidence functions (CIFs) of nonrelapse mortality (NRM) and relapse were 31% and 28%, respectively. CIF of acute graft-versus-host disease (GVHD) grades II to IV at day 100 was 28%. Three-year CIF of chronic GVHD was 25%. In adjusted analysis, better disease status at UCBT (hazard ratio [HR], 2.74; P < .001) and more recent UCBT (HR, 1.43; P = .01) were associated with increased OS, and a similar effect of these factors was observed on LFS. Contrastingly, the use of antithymocyte globulin had a negative effect in LFS. The risk of acute GVHD grades II to IV increased with the use of double UCBT (HR, 1.65; P = .02) and decreased with more recent transplant period (HR, .65; P = .02) and antithymocyte globulin use (HR, .55; P = .01). Outcomes of AYA UCBT improved in more recent years, becoming comparable with pediatric results. Demonstrating the feasibility of UCBT in AYAs facilitates stem cell source selection and provides the basis for future prospective studies.

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“…For patients diagnosed with haematological disorders such as chronic haematological neoplasms, person-centred care through partnership with haematologists and nurses is crucial to reduce potential disease burden [ 9 , 10 ], including for example pain, pruritic conditions, or psychosocial challenges [ 11 ]. Person-centred care is defined as “an approach to practice that is established through the formation and fostering of therapeutic relationships between all care providers, patients, and others significant to them.…”

Section: Introductionmentioning

confidence: 99%

User experiences on implementation of patient reported outcome measures (PROMs) in a Haematological outpatient clinic

Hansen

Kjerholt

Christensen

et al. 2020

J Patient Rep Outcomes

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Background PROMs can help healthcare professionals gain an improved understanding of patients’ physical burdens, functional levels, and (health-related) quality of life throughout disease and medical treatment. The aim of this study was to investigate the barriers and potential opportunities PROMs may present in a haematological outpatient clinic from three different perspectives: patients, nurses and haematologists. Methods The present study synthesizes three previously published studies that separately explored the experiences of patients, nurses and haematologists when implementing PROMs. The studies were all guided by the qualitative methodology Interpretive Description, including a focused ethnographic approach, to develop implications for future practice. Results The overall themes that emerged from the analysis were “Structural similarities influence the adoption of PROMs” and “Different perspectives on the potential of PROMs.” Conclusion Across the different user groups in the haematological outpatient clinic, the use of PROMs was thwarted due to an unquestioned commitment to biomedical knowledge and the system’s rationality and norms: PROM data was not used in patient consultations. Nurses and haematologists expressed different preferences related to potential future PROMs and different objectives for PROMs in clinical practice. From the different perspectives of the patients, nurses and haematologists, PROMs were not compatible with clinical practice. Further research is recommended to develop PROMs validated for use in haematological outpatient clinics. Moreover, implementation strategies adjusted to the structural barriers of the system are crucial.

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Psychosocial challenges and health-related quality of life of adolescents and young adults with hematologic malignancies

Cited by 39 publications

References 129 publications

Clinical, social, and psycho-oncological needs of adolescents and young adults (AYA) versus older patients following hematopoietic stem cell transplantation

Clinical, social, and psycho-oncological needs of adolescents and young adults (AYA) versus older patients following hematopoietic stem cell transplantation

Myeloablative Unrelated Cord Blood Transplantation in Adolescents and Young Adults with Acute Leukemia

User experiences on implementation of patient reported outcome measures (PROMs) in a Haematological outpatient clinic

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