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Inability to Return to Work and Need for Work Disability Pension Among Long Term Survivors of HSCT
Abstracts / Biol Blood Marrow Transplant 22 (2016) S19eS481
263 Helping Pediatric Bone Marrow Transplant Patient Siblings to Cope through Caregiver Education Elizabeth K. Smith 1, Amy Klein 2, Ashleigh Gay 1. 1 Cancer and Blood Diseases Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH; 2 Cincinnati Children’s Hospital Medical Center, Cincinnati, OH Background: Our psychosocial team recognized over time that pediatric transplant patients and families often present with common concerns and questions that exhibit a lack of confidence in managing psychosocial issues that arise for siblings. Caregivers with a strong sense of self are better able to cope and utilize available resources (Murray 2000). After reviewing current practices, it was determined that providing caregiver education needed to be delivered in a more consistent, accessible, and standardized manner. Our goal became to provide an educational booklet to patients’ families at the beginning of the transplant process. Purpose: There is growing awareness in pediatric health care that the psychosocial needs of healthy siblings of children with chronic and terminal illnesses are met less sufficiently than those of other members of the family (Murray 1999). Siblings of a chronically ill child are at risk for behavior problems, lower social competence and selfesteem, shyness, somatic complaints, poor peer relations, delinquency, loneliness, isolation, anxiety, depression, anger, excessive worry and poor grades (Williams 2003). Therefore, we created an educational booklet entitled “Siblings Matter Too: Helping Them to Cope.” The information provided in the resource can be applied to issues such as family separation, staying connected in meaningful ways, possible sibling reactions and feelings, transition from the hospital back to home, or potential end of life issues. Intervention: The booklet encompasses the philosophy of patient and family centered care and will ultimately empower a diverse population of families and their coping styles. The goal of the booklet is to provide the support and hands-on practical strategies that caregivers can utilize when faced with the sibling challenges related to the transplant and long-term hospitalization. The booklet addresses childhood developmental stages and explores potential challenges of transplant, possible reactions, and specific ways a caregiver can help. Summary: The booklet‘s distribution will be based on the assessment of both social work and child life specialists. By providing this easy to understand booklet at the beginning of the transplant process, consistent guidance and education will be provided to all families. We anticipate increased caregiver confidence in managing sibling issues and improved sibling experience during their healthcare journey.
264 Non-Biologic Factors and Outcomes in Allogeneic Stem Cell Transplant Grerk Sutamtewagul 1, Kamal Kant Singh Abbi 1, Umar Farooq 1, Sarah L. Mott2, Lindsay Dozeman1, Margarida Silverman 1. 1 Internal Medicine, Division of Hematology, Oncology, and Blood and Marrow
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Transplantation, University of Iowa Hospitals and Clinics, Iowa City, IA; 2 Holden Comprehensive Cancer Center, The University of Iowa Hospitals and Clinics, Iowa City, IA Background: Supportive system and socioeconomic status have influence on the outcomes in several medical conditions. Patients who underwent allogeneic hematopoietic stem cell transplant (Allo-HSCT) require close follow-up and well-coordinated post-transplant care. These non-biologic factors are not well-studied in Allo-HSCT setting. Methods: We conducted a retrospective analysis of all patients who underwent Allo-HSCT between 2005 and 2015. Non-biologic variables including marital status, distance from transplant center, occupation, household income, highest level of education and insurance along with known outcome-related clinicopathologic factors were collected. Cox proportional hazards regression was used to assess the effects of sociodemographic and clinicopathologic variables on progression-free (PFS) and overall survival (OS) and nonrelapse mortality (NRM). Results: Total of 386 patients were included in the analysis. Median age was 53.4 years old. The majority of the patients were married or lived with their partners (n¼268, 69.4%); 118 patients (30.6%) were single, separated, divorced, or widowed. Most of the patients lived in 50-100 miles distance from our institution (n¼175, 45.3%). There are 265 patients who had private or group health insurance (68.7%) while the others had Medicaid, Medicare, or VA as primary payer. In univariate analysis, there is a trend toward decreased OS in non-private insurance group but does not reach statistical significance (HR 1.22 [0.91-1.63], p¼0.19). Distance from the transplant center, level of education, household income, marital status, employment status, and occupation are not associated with OS or NRM. Clinicopathologic features including performance status, CMV status, HLA matching, and development of GVHD remain statistically significant factors associated with NRM and OS in the multivariate analysis. Conclusion: We do not find significant association between sociodemographic factors and HSCT outcomes. Clinicopathologic factors remain important elements influencing the HSCT outcomes.
265 Inability to Return to Work and Need for Work Disability Pension Among Long Term Survivors of HSCT Andre Tichelli, Sabine Gerull, Andreas Holbro, Andreas Buser, Joerg Halter, Jakob Passweg. University Hospital Basel, Basel, Switzerland Background: Return to work or equivalent belongs to one of the critical goals of HSCT. However, physical and mental late effects may impede the return to normal work after HSCT. In case of inability to work, patients may need work disability pension to assure a reasonable livelihood. The aim of this study is to evaluate inability to work and need for work disability pension among long-term survivors of HSCT and to analyze possible determinants for need of social support. Methods: This retrospective, single center cross-sectional study includes all patients treated with HSCT, surviving 35 years, and seen at the outpatient clinic between January
S194
Abstracts / Biol Blood Marrow Transplant 22 (2016) S19eS481
poor physical or mental health condition and fatigue are particularly prone to need social and financial support even long time after HSCT. These findings underline once more the importance of screening for chronic health condition and to undertake preventive measures in long-term survivors after HSCT.
266 Barriers to Transition in Paediatric BMT Ida Twist1, Melissa Ann Gabriel 2, Peter John Shaw 3. 1 Oncology, The Children’s Hospital at Westmead, Westmead, Australia; 2 Children’s Hosp Westmead Locked Bag 4001, Sydney, NSW, Australia; 3 Children’s Hospital at Westmead, Sydney, Australia Figure. Correlation between the age of long-time survivors and the need of work disability pension at time of last follow-up.
2013 and August 2015. The prevalence of the occupational status (return to work, inability to work, work inability pension), and the reasons for inability pension were evaluated. Results: In total, 250 long-term survivors were seen during the study period. Four were excluded because of a lack of data on occupational status, 43 because they were retired. From 203 evaluable patients (116 males; 177 alloHSCT; 187 malignant diseases), at time of the study 156 (77%) had an occupational status, 47 (23%) were unemployed. From the 156 patients who returned to work, 78 had full-time job, 26 reduced-time work by personal choice, 44 reduced-time work for medical reasons, and 8 were housewives. According to the national statistics, 3.4 to 4.0% of all insured individuals of the country aged between 18-65 years are annuitants of work disability pension. Among the long-term HSCT-survivors, 76/203 (37%) obtained part or full work disability pension. None of them had fulltime job, 33 had returned to part-time employment, 41 were not working at all, and 2 did not find a job. In comparison, the 127 patients without work disability pension, 107 (84%) were full-time working, 16 (13%) had part-time employment, 4 (3%) had no employment (P<0.001). Patients with disability pension were significantly older at time of HSCT and at study time (Fig), had a shorter interval between transplantation and the last follow-up, were more often living alone (not married, no partner), had more often Karnofsky score < 70%, and chronic GVHD of any decree, had higher number of physical and mental active late effects, and higher score of fatigue, when compared to the patients without disability pension. In contrast, gender, type of HSCT, primary disease, having children or not, and smoking habits did not differ between both groups. Conclusions: After HSCT, 37% of long-term survivors need social financial support to manage day-to-day life. Survivors with older age at HSCT and at study time, living alone, with
The Children’s Hospital at Westmead is a tertiary paediatric facility that accepts new patients up to 16y of age. We have offered a comprehensive BMT follow-up service since 1992. In 2009, a Nurse Practitioner Position in BMT follow-up and Transition was created. We have reviewed the first 5 years of this service, to consider the successes and challenges of this position. The model of care has evolved significantly over the past 23 years. Patients now attend either a BMT specific follow-up clinic (BMTFU) or the Oncology Long-term follow up clinic (OLTFU). We reviewed the outcome of the 357 patients who were alive at 2 years post-BMT. Sixty one died subsequently, from relapsed disease (n¼41), second malignancy (n¼6), lung disease (n¼8) and late effects of treatment (n¼6). Twenty-five cases are either lost to follow up, or have more overtly refused follow-up. The OLTFU have transitioned 22 to an adult BMT service, discharged 26 to follow-up by their GP and actively follows 43 post-BMT patients. Ten cases required urgent transfer of care to adult services for acute problems, all subsequently died. Of 172 patients followed in BMTFU, 150 remain in active follow-up, 20 with combined adult services. Thirty-nine are 18y or older, and so could be transitioned to an adult service. Twelve patients have complex post BMT problems, including chronic lung disease in 8 (leading to death in 6), major neurological problems in 3 and fatal EBV PTLD in one. In 4, follow-up was punctuated by relapse, leading to further therapy and second transplant. Six patients were transitioned for problems requiring in-patient therapy. Eleven patients have a variety of very rare non-malignant diseases that will not be familiar to adult clinicians providing adult BMT follow-up. Post-BMT patients present a complex mixture of issues, including reconciling life-long surveillance with being and feeling healthy and the development of new or recurrent illnesses. At the same time they face issues such as (in) fertility and emerging independence. Transitioning paediatric survivors to an adult clinic focused on acute GvHD does not encompass their needs. Until BMTFU clinics are fully supported in the adult system, adult survivors of paediatric BMT will have their overall care supervised by paediatricians, at least in our state.
263 Helping Pediatric Bone Marrow Transplant Patient Siblings to Cope through Caregiver Education Elizabeth K. Smith 1, Amy Klein 2, Ashleigh Gay 1. 1 Cancer and Blood Diseases Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH; 2 Cincinnati Children’s Hospital Medical Center, Cincinnati, OH Background: Our psychosocial team recognized over time that pediatric transplant patients and families often present with common concerns and questions that exhibit a lack of confidence in managing psychosocial issues that arise for siblings. Caregivers with a strong sense of self are better able to cope and utilize available resources (Murray 2000). After reviewing current practices, it was determined that providing caregiver education needed to be delivered in a more consistent, accessible, and standardized manner. Our goal became to provide an educational booklet to patients’ families at the beginning of the transplant process. Purpose: There is growing awareness in pediatric health care that the psychosocial needs of healthy siblings of children with chronic and terminal illnesses are met less sufficiently than those of other members of the family (Murray 1999). Siblings of a chronically ill child are at risk for behavior problems, lower social competence and selfesteem, shyness, somatic complaints, poor peer relations, delinquency, loneliness, isolation, anxiety, depression, anger, excessive worry and poor grades (Williams 2003). Therefore, we created an educational booklet entitled “Siblings Matter Too: Helping Them to Cope.” The information provided in the resource can be applied to issues such as family separation, staying connected in meaningful ways, possible sibling reactions and feelings, transition from the hospital back to home, or potential end of life issues. Intervention: The booklet encompasses the philosophy of patient and family centered care and will ultimately empower a diverse population of families and their coping styles. The goal of the booklet is to provide the support and hands-on practical strategies that caregivers can utilize when faced with the sibling challenges related to the transplant and long-term hospitalization. The booklet addresses childhood developmental stages and explores potential challenges of transplant, possible reactions, and specific ways a caregiver can help. Summary: The booklet‘s distribution will be based on the assessment of both social work and child life specialists. By providing this easy to understand booklet at the beginning of the transplant process, consistent guidance and education will be provided to all families. We anticipate increased caregiver confidence in managing sibling issues and improved sibling experience during their healthcare journey.
264 Non-Biologic Factors and Outcomes in Allogeneic Stem Cell Transplant Grerk Sutamtewagul 1, Kamal Kant Singh Abbi 1, Umar Farooq 1, Sarah L. Mott2, Lindsay Dozeman1, Margarida Silverman 1. 1 Internal Medicine, Division of Hematology, Oncology, and Blood and Marrow
S193
Transplantation, University of Iowa Hospitals and Clinics, Iowa City, IA; 2 Holden Comprehensive Cancer Center, The University of Iowa Hospitals and Clinics, Iowa City, IA Background: Supportive system and socioeconomic status have influence on the outcomes in several medical conditions. Patients who underwent allogeneic hematopoietic stem cell transplant (Allo-HSCT) require close follow-up and well-coordinated post-transplant care. These non-biologic factors are not well-studied in Allo-HSCT setting. Methods: We conducted a retrospective analysis of all patients who underwent Allo-HSCT between 2005 and 2015. Non-biologic variables including marital status, distance from transplant center, occupation, household income, highest level of education and insurance along with known outcome-related clinicopathologic factors were collected. Cox proportional hazards regression was used to assess the effects of sociodemographic and clinicopathologic variables on progression-free (PFS) and overall survival (OS) and nonrelapse mortality (NRM). Results: Total of 386 patients were included in the analysis. Median age was 53.4 years old. The majority of the patients were married or lived with their partners (n¼268, 69.4%); 118 patients (30.6%) were single, separated, divorced, or widowed. Most of the patients lived in 50-100 miles distance from our institution (n¼175, 45.3%). There are 265 patients who had private or group health insurance (68.7%) while the others had Medicaid, Medicare, or VA as primary payer. In univariate analysis, there is a trend toward decreased OS in non-private insurance group but does not reach statistical significance (HR 1.22 [0.91-1.63], p¼0.19). Distance from the transplant center, level of education, household income, marital status, employment status, and occupation are not associated with OS or NRM. Clinicopathologic features including performance status, CMV status, HLA matching, and development of GVHD remain statistically significant factors associated with NRM and OS in the multivariate analysis. Conclusion: We do not find significant association between sociodemographic factors and HSCT outcomes. Clinicopathologic factors remain important elements influencing the HSCT outcomes.
265 Inability to Return to Work and Need for Work Disability Pension Among Long Term Survivors of HSCT Andre Tichelli, Sabine Gerull, Andreas Holbro, Andreas Buser, Joerg Halter, Jakob Passweg. University Hospital Basel, Basel, Switzerland Background: Return to work or equivalent belongs to one of the critical goals of HSCT. However, physical and mental late effects may impede the return to normal work after HSCT. In case of inability to work, patients may need work disability pension to assure a reasonable livelihood. The aim of this study is to evaluate inability to work and need for work disability pension among long-term survivors of HSCT and to analyze possible determinants for need of social support. Methods: This retrospective, single center cross-sectional study includes all patients treated with HSCT, surviving 35 years, and seen at the outpatient clinic between January
S194
Abstracts / Biol Blood Marrow Transplant 22 (2016) S19eS481
poor physical or mental health condition and fatigue are particularly prone to need social and financial support even long time after HSCT. These findings underline once more the importance of screening for chronic health condition and to undertake preventive measures in long-term survivors after HSCT.
266 Barriers to Transition in Paediatric BMT Ida Twist1, Melissa Ann Gabriel 2, Peter John Shaw 3. 1 Oncology, The Children’s Hospital at Westmead, Westmead, Australia; 2 Children’s Hosp Westmead Locked Bag 4001, Sydney, NSW, Australia; 3 Children’s Hospital at Westmead, Sydney, Australia Figure. Correlation between the age of long-time survivors and the need of work disability pension at time of last follow-up.
2013 and August 2015. The prevalence of the occupational status (return to work, inability to work, work inability pension), and the reasons for inability pension were evaluated. Results: In total, 250 long-term survivors were seen during the study period. Four were excluded because of a lack of data on occupational status, 43 because they were retired. From 203 evaluable patients (116 males; 177 alloHSCT; 187 malignant diseases), at time of the study 156 (77%) had an occupational status, 47 (23%) were unemployed. From the 156 patients who returned to work, 78 had full-time job, 26 reduced-time work by personal choice, 44 reduced-time work for medical reasons, and 8 were housewives. According to the national statistics, 3.4 to 4.0% of all insured individuals of the country aged between 18-65 years are annuitants of work disability pension. Among the long-term HSCT-survivors, 76/203 (37%) obtained part or full work disability pension. None of them had fulltime job, 33 had returned to part-time employment, 41 were not working at all, and 2 did not find a job. In comparison, the 127 patients without work disability pension, 107 (84%) were full-time working, 16 (13%) had part-time employment, 4 (3%) had no employment (P<0.001). Patients with disability pension were significantly older at time of HSCT and at study time (Fig), had a shorter interval between transplantation and the last follow-up, were more often living alone (not married, no partner), had more often Karnofsky score < 70%, and chronic GVHD of any decree, had higher number of physical and mental active late effects, and higher score of fatigue, when compared to the patients without disability pension. In contrast, gender, type of HSCT, primary disease, having children or not, and smoking habits did not differ between both groups. Conclusions: After HSCT, 37% of long-term survivors need social financial support to manage day-to-day life. Survivors with older age at HSCT and at study time, living alone, with
The Children’s Hospital at Westmead is a tertiary paediatric facility that accepts new patients up to 16y of age. We have offered a comprehensive BMT follow-up service since 1992. In 2009, a Nurse Practitioner Position in BMT follow-up and Transition was created. We have reviewed the first 5 years of this service, to consider the successes and challenges of this position. The model of care has evolved significantly over the past 23 years. Patients now attend either a BMT specific follow-up clinic (BMTFU) or the Oncology Long-term follow up clinic (OLTFU). We reviewed the outcome of the 357 patients who were alive at 2 years post-BMT. Sixty one died subsequently, from relapsed disease (n¼41), second malignancy (n¼6), lung disease (n¼8) and late effects of treatment (n¼6). Twenty-five cases are either lost to follow up, or have more overtly refused follow-up. The OLTFU have transitioned 22 to an adult BMT service, discharged 26 to follow-up by their GP and actively follows 43 post-BMT patients. Ten cases required urgent transfer of care to adult services for acute problems, all subsequently died. Of 172 patients followed in BMTFU, 150 remain in active follow-up, 20 with combined adult services. Thirty-nine are 18y or older, and so could be transitioned to an adult service. Twelve patients have complex post BMT problems, including chronic lung disease in 8 (leading to death in 6), major neurological problems in 3 and fatal EBV PTLD in one. In 4, follow-up was punctuated by relapse, leading to further therapy and second transplant. Six patients were transitioned for problems requiring in-patient therapy. Eleven patients have a variety of very rare non-malignant diseases that will not be familiar to adult clinicians providing adult BMT follow-up. Post-BMT patients present a complex mixture of issues, including reconciling life-long surveillance with being and feeling healthy and the development of new or recurrent illnesses. At the same time they face issues such as (in) fertility and emerging independence. Transitioning paediatric survivors to an adult clinic focused on acute GvHD does not encompass their needs. Until BMTFU clinics are fully supported in the adult system, adult survivors of paediatric BMT will have their overall care supervised by paediatricians, at least in our state.