Symptom Burden and Recovery in the First Year After Allogeneic Hematopoietic Stem Cell Transplantation.

BACKGROUND: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden. OBJECTIVE: The aim of this study was to examine patient-reported symptom burden in the first year after allo-HSCT and whether a high symptom burden 4 months after allo-HSCT predicts recovery, that is, general health and sick leave, 1 year after transplantation. METHODS: Allo-HSCT patients aged 18 to 65 years were included (n = 189). Questionnaire data were collected on admission to the allo-HSCT unit, as well as 4 and 7 months and 1 year after allo-HSCT. Logistic regression evaluated relationships between demographic characteristics, chronic graft-versus-host disease, physical activity, and a high symptom burden. RESULTS: Tiredness, susceptibility to infection, disinterest in sex, and physical weakness remained the most frequent symptoms, while distressing symptoms varied during the first year after allo-HSCT.Poor general health 1 year after allo-HSCT was associated with older age, low physical activity, and a high symptom burden 4 months after allo-HSCT. Full-time sick leave 1 year after allo-HSCT was associated with chronic graft-versus-host disease, low physical activity, and a high symptom burden 4 months after transplantation. CONCLUSIONS: Experiencing a high symptom burden 4 months after allo-HSCT can affect recovery 1 year after transplantation. Furthermore, low physical activity 4 months after allo-HSCT can predict both general health and sick leave 1 year after transplantation. IMPLICATIONS FOR PRACTICE: Repeated symptom assessment, including experienced distress, is central for reducing overall symptom burden and supporting recovery after allo-HSCT.

Worries and Psychological Well-Being in Potential Hematopoietic Stem Cell Donors Before Donation-A Swedish National Study.

BACKGROUND: The physical risks involved in donating hematopoietic stem cells have been thoroughly studied, but little is known about the psychological risks potential donors might face before donation. The aim of this study was to describe potential the pre-donation worries and psychological well-being of hematopoietic stem cell donors and investigate possible associations between donor characteristics and psychological well-being. METHODS: In a cross-sectional, national cohort study, we describe pre-donation worries and psychological well-being and investigate possible associations between donor characteristics and psychological well-being. A questionnaire was sent to prospective adult hematopoietic stem cells donors. RESULTS: The study included 210 participants, 47% of whom were related and 53% unrelated to the recipient. Of the participants, 39% reported great worry about the recipient and 12% great worry about themselves as potential donors. Symptoms of anxiety were expressed by 21%, whereas symptoms of depression were uncommon and perceived general mental health was slightly lower than in the Swedish population. Great worry about oneself, lower age, and female sex were related to increased anxiety and lower mental health. CONCLUSION: This study highlighted that some potential donors report high levels of pre-donation worry and that greater worry about oneself, lower age, and female sex are associated with lower psychological well-being. Although further studies are needed to investigate this psychological risk over time, it is clear that some potential donors are particularly vulnerable.

A person-centred intervention remotely targeting family caregivers' support needs in the context of allogeneic hematopoietic stem cell transplantation-a feasibility study.

PURPOSE: Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers' burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers' support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool Intervention (CSNAT-I) in the HSCT context. METHODS: CSNAT-I consists of an evidence-based tool and a five-stage person-centred process. The intervention was performed remotely by two designated nurses from two HSCT centres, one before HSCT and the second 6 weeks after (November 2020 to March 2021). To capture the experiences of using CSNAT-I, interviews were conducted with family caregivers and reflections were gathered from the designated nurses. RESULTS: Of 34 eligible family caregivers, 27 participated, 70% were partners and the rest children, siblings or other relatives. The main support needs were knowing what to expect in the future and dealing with your feelings and worries. The most frequent support actions according to CSNAT-I were psychological support and medical information. Four categories summarised family caregivers and designated nurses' experiences: CSNAT-I was relevant and became an eye opener; nurses' experiences were important for enabling trustful CSNAT-I conversations; CSNAT-I provided family caregivers with support and a sense of security; and CSNAT-I gave family caregivers insight and enabled change. CONCLUSION: Both family caregivers and designated nurses experienced that using CSNAT-I in an HSCT context was feasible and had the potential to provide valuable support for most of the participating family caregivers.

Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation.

OBJECTIVE: Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers' preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers. METHOD: This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data. RESULTS: Family caregivers with a higher education and those who were the patient's partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health. SIGNIFICANCE OF RESULTS: A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.

Risk perception, treatment adherence, and personality during COVID-19 pandemic: An international study on cancer patients.

OBJECTIVE: To explore the role of personality traits in moderating the relation between COVID-19 risk perception and treatment adherence, and between risk perception and psychosocial distress in patients diagnosed with cancer. METHODS: An online survey (n = 1281) was conducted worldwide in seven countries (Austria, Germany, Hong Kong, Italy, Spain, Sweden, and Turkey). Inclusion criteria were to be 18 years of age or older, have received a cancer diagnosis, and be in treatment or follow-up. A few moderated regression models were performed with both personality traits and Hierarchical Taxonomy of Psychopathology super-spectra as moderators. RESULTS: Detachment, negative affectivity, psychoticism and all the super-spectra significantly moderated the relation between coronavirus risk perception and psychosocial distress, after the adjusting effect of confidence in safeguards. Only negative affectivity moderated the association between coronavirus risk perception and treatment adherence. CONCLUSIONS: Personality traits may foster the understanding of how a patient might adjust to cancer treatment and, more generically, to highly stressful events such as the COVID-19 pandemic. Further research is needed to confirm the results in different cancer stages and types.

Exploring experiences of implementing standardized cancer patient pathways within investigatory units - a qualitative study.

BACKGROUND: In the implementation of standardized cancer patient pathways (CPPs), the investigatory units, endoscopy, radiology and pathology, are crucial to ensure an eventual cancer diagnosis. However, when evaluating the implementation of CPPs, little attention has been paid to the healthcare professionals working in these units. The aim of this study was to explore experiences of the implementation of CPPs among health professionals in investigatory units. METHODS: This descriptive qualitative study included 55 health professionals working in investigatory units. Participants were interviewed in 2017-2018, and data were analysed using thematic analysis. RESULTS: The health professionals reported benefits, facilitators and challenges when describing their experiences of implementing CPPs. Benefits included that CPP improved collaboration and increased focus on the patients. Facilitators in the implementation process included pre-existing well-functioning work processes and having supportive functions (e.g. coordinators). Challenges included the lack of staff and clinical equipment, as well as unjustified time-slots and incorrect referrals. CONCLUSIONS: The findings show that most health professionals working in investigatory units' experience benefits with the implementation of CPP, but the lack of resources was especially hard to overcome.

Important factors associated with sick leave after allogeneic haematopoietic stem cell transplantation-a 1-year prospective study.

PURPOSE: This study examines sick leave (SL) and factors associated with full-time SL 1 year after allogeneic haematopoietic stem cell transplantation (allo-HSCT) in patients of working age from 2009 to 2016 (n = 122). METHODS: Questionnaire data were collected on admission to the allo-HSCT unit, at 7 months and 1 year after allo-HSCT. Associations between factors and SL were analysed using logistic regression analyses. RESULTS: One year after allo-HSCT, 76% of participants were on SL, with 36% on full-time SL. In univariable analyses, chronic graft-versus-host-disease (cGvHD) (OR 3.07; 95% CI 1.34-7.07; p = 0.01), having symptoms of depression at 7 months (OR 4.81; 95% CI 1.69-13.69; p = 0.00) and low levels of vocational satisfaction at 7 months after treatment (OR 3.27; 95% CI 1.27-8.41; p = 0.01) were associated with full-time SL 1 year after allo-HSCT. cGvHD (OR 3.43; 95% CI 1.35-8.73; p = 0.01) and having symptoms of depression at 7 months after allo-HSCT (OR 3.37; 95% CI 1.2-11.58; p = 0.02) remained significant in multivariable analysis. CONCLUSION: The majority of allo-HSCT survivors were on SL 1 year after treatment, and cGvHD, low vocational satisfaction and depressive symptoms were associated with full-time SL 1 year after allo-HSCT. IMPLICATIONS FOR CANCER SURVIVORS: Healthcare professionals need to be observant of and manage the consequences of cGvHD and patients' symptoms of depression in order to support them appropriately in their return-to-work process.

Family caregivers' support needs during allo-HSCT-a longitudinal study.

PURPOSE: The study aimed to explore family caregivers' support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome. METHODS: This longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the recipient, and their mean age was 54 years. They completed the 14-item Carer Support Needs Assessment Tool (CSNAT) and caregiver outcome measures (caregiver burden, anxiety, depression, preparedness for caregiving and general health) prior to allo-HSCT and 3, 6 and 16 weeks later. RESULTS: The two top support needs prior to allo-HSCT were 'knowing what to expect in the future' (79%) and 'dealing with your own feelings' (70%). Several support needs were associated with younger age and not being a partner, while higher needs implied worse caregiver outcomes for at least one of the outcomes prior to transplantation. Most support needs remained the same at the last follow-up. CONCLUSION: The findings that high support needs are often associated with worse caregiver outcomes and most support needs do not diminish over time indicate that more attention should be placed on the situation of family caregivers.

Support in the context of allogeneic hematopoietic stem cell transplantation - The perspectives of family caregivers.

BACKGROUND AND AIM: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers' experiences of providing and receiving support during allo-HSCT. METHOD: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data. RESULTS: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health. CONCLUSIONS: Family caregivers' risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support.

Fex-Talk: a Short Educational Intervention Intended to Enhance Nurses' Readiness to Discuss Fertility and Sexuality with Cancer Patients.

Sexual and reproductive health is known to generally be insufficiently addressed by health care personnel working in cancer care. We hence developed a short educational intervention, Fex-Talk, to overcome the barriers to communicate about sexuality and fertility. The present study sought to evaluate the Fex-Talk intervention, which aims to enhance nurses' readiness to discuss fertility and sexuality issues with cancer patients. The educational intervention involves a single session with an optional follow-up session, and it includes different components in accordance with Kolb's experiential learning cycle. The evaluation was based on participants' oral and written feedback regarding the content and organization of the intervention, as well as on teachers' field notes from five educational events involving nurses who work with cancer patients (n = 140). The data were analyzed using a thematic approach. Four themes were identified, namely increased awareness, need for knowledge, challenging discomfort, and dealing with external obstacles. The intervention increased participants' awareness of patients' need to discuss sexuality and fertility and of their own need for additional knowledge. The role-play exercise was said to challenge personal discomfort, although the participants still felt it helped to boost their courage to, in the future, engage in such conversations. Several external obstacles to initiate a conversation about sexuality or fertility were identified, and possible strategies for overcoming them were discussed. In conclusion, the Fex-Talk intervention was experienced positively by the participating nurses. The results indicate that the intervention increased nurses' understanding of patients' needs related to sex and fertility and overcome barriers to initiate discussions about sex and fertility with patients.

Ways of understanding the ability to have children among young adult survivors of childhood cancer - A phenomenographic study.

PURPOSES: The aim was to explore the ways young adult survivors of childhood cancer with risk of being infertile understand their ability to have children. METHOD: The study has a qualitative design with a phenomenographic approach. Interviews with a purposeful sample of 19 childhood cancer survivors who did not have children (age range 17-27) were carried out and analysed. RESULTS: We identified four qualitatively different ways in which young adult survivors of childhood cancer understand their ability to have children: difficulty in having children is not as important as surviving cancer, having a biological child may be a complicated procedure, having children may be affected by hereditary concerns, having children in the future is a difficult topic to deal with. CONCLUSIONS: The four different ways in which young adult childhood cancer survivors understand their ability to have children did not appear to be solely related to information they had or had not received during treatment but appeared to reflect their current life situation and how they were coping with their cancer experience. Using survivors' understandings of their ability to have children is recommended as a starting point when healthcare personnel initiate communication about fertility issues in survivorship care. Some survivors need psychosocial support for the acceptance and management of both cancer and fertility problems.

Occupational status among adult survivors following allogeneic stem cell transplantation in childhood.

This study examined occupational status and factors associated with sick leave and disability pension among adult long-term survivors previously treated with allogeneic stem cell transplantation (allo-SCT) during childhood. Moreover, occupational status was compared to that of a reference group. Data were collected with questionnaires and from medical records. The SCT group included 59 adults (18-45 years old: response rate 63%) treated with allo-SCT in childhood with a median of 17 (range 3-28) years earlier. The reference group included 296 individuals randomly selected from the general population. The results show that 54% of the long-term survivors were working part- or full-time and that 19% were on sick leave or disability pension. A larger proportion of the SCT group was on sick leave or disability pension (19% vs. 6%: p < .001) than of the reference group. The logistic regression analysis revealed that being on sick leave or disability pension among long-term survivors was associated with late effects related to the allo-SCT (OR 12.28: 95% CI 1.3-111.6: p = .03). The results underscore that long-term survivors' engagement in paid work is influenced many years after treatment and highlights the need to include vocational assistance in the rehabilitation following allo-SCT in childhood.

Feasibility of a self-help web-based intervention targeting young cancer patients with sexual problems and fertility distress.

PURPOSE: The purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer. METHODS: Twenty-three persons with cancer (19 women and 4 men, age 18-43, 1-5 years post-diagnosis of lymphoma, breast, gynecologic, central nervous system, or testicular cancer) were recruited to test a 2-month web-based program targeting sexual problems or fertility distress. The programs were organized in modules with educational and behavior change content, including texts, illustrations, exercises, and video vignettes. The program also included a discussion forum and an "ask the expert" forum. In addition, the sexuality program offered two telephone consultations. Feasibility (regarding demand, acceptability, preliminary efficacy, and functionality) was evaluated with the website system data, telephone interviews, continuous online evaluations, and study-specific measures. RESULTS: Fifteen participants completed four modules or more. Most of the program features were used and well accepted by these "committed users." The web-based format enabled flexible use by participants with diverse needs. Preliminary efficacy was indicated by self-reported increased knowledge and skill in handling sexual problems and fertility distress. The website was easy to use and functioned well technically. CONCLUSIONS: The present study indicated that this web-based intervention was feasible for adolescents and young adults with cancer. The effectiveness of the intervention in decreasing sexual problems and fertility distress will be tested in a population-based randomized controlled trial for adolescents and young adults with cancer. TRIAL REGISTRATION: ISRCTN36621459.

Development of a Self-Help Web-Based Intervention Targeting Young Cancer Patients With Sexual Problems and Fertility Distress in Collaboration With Patient Research Partners.

BACKGROUND: The Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive health, including sexuality, an area of great importance and approximately 50% report sexual problems and fertility-related concerns following cancer treatment. Therefore, we set out to develop a self-help Web-based intervention, Fex-Can, to alleviate such problems. To improve its quality, we decided to involve patients and significant others as research partners. The first 18 months of our collaboration are described in this paper. The intervention will subsequently be tested in a feasibility study followed by a randomized controlled trial. OBJECTIVE: The study aims to describe the development of a Web-based intervention in long-term collaboration with patient research partners (PRPs). METHODS: Ten former cancer patients and two significant others participated in building the Web-based intervention, using a participatory design. The development process is described according to the design step in the holistic framework presented by van Gemert-Pijnen et al and evaluates the PRPs' impact on the content, system, and service quality of the planned intervention. RESULTS: The collaboration between the research group and the PRPs mainly took place in the form of 1-day meetings to develop the key components of the intervention: educational and behavior change content, multimedia (pictures, video vignettes, and audios), interactive online activities (eg, self-monitoring), and partial feedback support (discussion forum, tailored feedback from experts). The PRPs influenced the intervention's content quality in several ways. By repeated feedback on prototypes, the information became more comprehensive, relevant, and understandable. The PRPs gave suggestions concerning the number of exercises and pointed out texts and pictures needing revision (eg, experienced as normative or stereotypical) to increase the persuasiveness of the program. The system quality was improved by PRPs' feedback on design, technical malfunctions, and navigation on the website. Based on feedback about availability of professional support (technical problems and program content), the organization for support was clarified, which increased service quality. The PRPs also influenced the research project on an overall level by suggesting modifications of inclusion criteria for the RCT and by questioning the implementation plan. CONCLUSIONS: With suggestions and continuous feedback from PRPs, it was possible to develop a Web-based intervention with persuasive design, believed to be relevant and attractive for young persons with cancer who have sexual problems or fertility distress. In the next step, the intervention will be tested in a feasibility study, followed by an RCT to test the intervention's effectiveness in reducing sexual problems and fertility distress. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 36621459; http://www.isrctn.com/ISRCTN36621459 (Archived by WebCite at http://www.webcitation.org/6gFX40F6T).

Perceptions of School Among Childhood Cancer Survivors: A Comparison With Peers.

The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors. It is suggested that survivors perceive school overall as positive and do not have more problems reaching educational goals than their peers. However, quality of relationships with friends needs further investigation.

General health, symptom occurrence, and self-efficacy in adult survivors after allogeneic hematopoietic stem cell transplantation: a cross-sectional comparison between hospital care and home care.

PURPOSE: Earlier studies have shown that home care during the neutropenic phase after allogeneic hematopoietic stem cell transplantation (allo-HSCT) is medically safe, with positive outcomes. However, there have been few results on long-term outcomes after home care. The aims of this study were to compare general health, symptom occurrence, and self-efficacy in adult survivors who received either home care or hospital care during the early neutropenic phase after allo-HSCT and to investigate whether demographic or medical variables were associated with general health or symptom occurrence in this patient population. METHODS: In a cross-sectional survey, 117 patients (hospital care: n = 78; home care: n = 39) rated their general health (SF-36), symptom occurrence (SFID-SCT, HADS), and self-efficacy (GSE) at a median of 5 (1-11) years post-HSCT. RESULTS: No differences were found regarding general health, symptom occurrence, or self-efficacy between groups. The majority of patients in both hospital care (77 %) and home care (78 %) rated their general health as "good" with a median of 14 (0-36) current symptoms. Symptoms of fatigue and sexual problems were among the most common. Poor general health was associated with acute graft-versus-host disease (GVHD), low self-efficacy, and cord blood stem cells. A high symptom occurrence was associated with female gender, acute GVHD, and low self-efficacy. CONCLUSIONS: No long-term differences in general health and symptom occurrence were observed between home care and hospital care. Thus, home care is an alternative treatment method for patients who for various reasons prefer this treatment option. We therefore encourage other centers to offer home care to patients.

Self-perception of symptoms of anemia and fatigue before and after blood transfusions in patients with myelodysplastic syndromes.

PURPOSE: Myelodysplastic syndromes (MDS) constitute a heterogeneous group of clonal bone marrow disorders characterized by chronic refractory anemia. Many patients with MDS are dependent on regular blood transfusions. The study aimed to investigate symptoms of anemia and fatigue in patients with MDS immediately before and after blood transfusion and to capture patients' descriptions of their symptoms. METHODS: Sixteen transfusion-dependent MDS patients with a median age of 74 years (range 67-91) were included. Data were collected longitudinally using the Functional Assessment of Cancer Therapy Anemia (FACT-An) questionnaire, which measured anemia and fatigue symptoms before and after one blood transfusion (day 0-4 and 7). In addition, each patient was interviewed about his or her symptoms. RESULTS: The median total score on FACT-An increased after blood transfusion from 50 to 58 (day 0-7, p = 0.016), indicating decreased symptom burden. A positive correlation was found between increments in the FACT-An score and hemoglobin value (rs 0.66, p = 0.02). One of seven items measuring symptoms of anemia (shortness of breath) and two of 13 symptoms of fatigue (feeling fatigue and weakness) changed significantly for the better from day 0 to day 7. The interviews confirmed the FACT-An results and revealed that patients experienced severe fatigue that negatively affected the maintenance of interpersonal relationships. CONCLUSIONS: After blood transfusion, symptoms of anemia and fatigue decreased in patients with MDS. The patients felt their symptoms had a negative impact on social life. Providing psychosocial support may contribute to improve the care of patients with transfusion-dependent MDS.

Adolescents' and young adults' experiences of childhood cancer: descriptions of daily life 5 years after diagnosis.

BACKGROUND: Survivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has been studied to a limited extent; an increased understanding of this young group is needed to improve follow-up care. OBJECTIVE: The aim of this study was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents' and young adults' views of what it is like living with this experience. METHODS: Fifty-nine 11- to 22-year-olds were interviewed a median of 5 years after a cancer diagnosis (response rate, 66%). Data were collected through telephone interviews and were analyzed using qualitative content analysis techniques. RESULTS: Three groups of informants were identified according to their descriptions of the influence of cancer treatment on their daily life: "feeling like anyone else" (informants who described that the cancer experience had almost no influence on current life) (49%), "feeling almost like others" (those who described some influence) (44%), and "feeling different" (those describing a great influence on current life) (7%). CONCLUSIONS: Most of the adolescents and young adults appear to get along well, although many informants described that life was affected to some extent by having had cancer. IMPLICATIONS FOR PRACTICE: Follow-up care is needed that can identify those young survivors of childhood cancer having trouble with daily life and offer them support to strengthen their resources in managing difficulties in relation to having had cancer.

Patients' goals related to health and function in the first 13 months after allogeneic stem cell transplantation.

PURPOSE: Patient participation in goal setting and decision making is a core component of the rehabilitation process, but there is little information on what patients want to achieve after allogeneic stem cell transplantation (allo-SCT). The aim of this study was to describe adult patients' perceptions of goals related to health and function, as well as self-perceived limitations and facilitating strategies in the first 13 months after allo-SCT. METHODS: Fifteen patients with a median age of 44 years (range, 22-65 years) were interviewed on one occasion during the first year after allo-SCT. Data were analysed using qualitative content analysis. RESULTS: Results showed that patients felt that time after allo-SCT largely concerned: "to be healthy" and "to participate in a normal life". Some patients felt it was easy to set goals while others found it difficult. Most described goals had a long-term character. Patients were faced with a wide variety of limitations of which a few did not link to a described goal. Several facilitating strategies were described that either had or could help patients to reach their goals. CONCLUSIONS: Our results indicate that assistance with setting achievable goals, including individualised strategies and support from health care professionals to realise the goals, may assist in the rehabilitation to restore health and function after allo-SCT.