Aims: The aim of this study was to clarify practical use of feedback report in each institution participated the nationwide bereavement survey (J-HOPE3). Methods: After a nationwide bereavement survey (J-HOPE3) conducted in 2014, we sent a feedback report to each participated institution (20 general wards, 133 inpatient palliative care units, and 22 home hospice services). The feedback report included the results from quality of care, bereaved family’s mental status, and free comments from the participant of their own institution. We sent a questionnaire 4 month following to the feedback report for all institutions regarding the practical use of results from the feedback report. Results: The analysis included 129 (response rate 74%) returned questionnaires. The institutions that they passed around the report was 90%, discussed about their results at a staff meeting was 54%, and reported the results to manager/chief of the institution was 65%. Around 80% of the institutions responded positively to receive the feedback report of their own institution such as “It was good that they could understand the strengths and weakness of their own institutions” which reported that they worked on to improve care were 48%. Conclusions: Current study had shown data about practical use of the feedback report of bereavement study. It is important to feedback the results and encourage the institution to make use of the results in their daily practice, especially to discuss the results in staff meetings.

The aim of this study was to understand the use of complementary and alternative medicine (CAM) in cancer patients in Japan. This study was part of the Japan Hospice and Palliative care Evaluation 2016 (J-HOPE2016) Study. A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who died at palliative care units. Data suggest that 54% of cancer patients use CAM. In comparison with a previous study in 2005 in Japan, categories of CAM vary widely; CAM previously included supplements mostly, but now exercise and mind and body therapy are also used. Most cancer patients use CAM without any harmful influence on their household economy and cancer treatment; however, in some patients, CAM incurs a large expense and a delay in starting cancer treatment. Therefore, it is important for medical staff and patients to have an opportunity to discuss CAM use. Multiple logistic regression analysis shows that CAM use is significantly associated with younger patients and highly educated families; moreover, there is a possibility that family members who use CAM have a high level of psychological distress. We must pay attention to the physical and the psychological aspects of cancer patients who use CAM and their families. Further studies are needed to investigate the use of each category of CAM, and to understand patients who use CAM and who die at home or in hospitals other than palliative care units.

Dialysis hypotension is one of the most common complications observed during hemodialysis. As it may be due to vasodilatation, vasoconstrictors are usually given to patients to control blood pressure. Howerver, there are some patients who are resistant to the medication with vasoconstrictors. Recently, it has been reported that as one of the treatments of dialysis hypotension, the cooling of dialysate is effective in inducing vasoconstriction via stimulating the sympathetic nerve system. Also, the application of the interaction of citrus juices with some kinds of drugs to the treatment of dialysis hypotension has been reported effective. In the present study, we examined the effectiveness of those two methods in nine hemodialysis patients in whom dialysis hypotension had not been improved with vasoconstrictors. Dialysate temperatures were lowered from 36.0 to 35.0 C during hemodialysis and/or 100m1 of citrus juice (grapefruit juice) were given to the patients before hemodialysis in addition to vasoconstrictors. Lowering dialysate temperaturse reduced the incidence of intradialytic hypotension and helped improve the patients' quality of life after hemodialysis therapy. Body temperature remained unchanged between before and after hemodialysis. However, we observed cramps in two patients and an impairment of consciousness in one patient during hemodialysis. Thus, we concluded due caution should be exercise against the side effects during hemodialysis when dialysate temperatures are lowered. Meanwhile, the intake of grapefruit juice before hemodialysis was not effective for the improvement of intradialytic hypotension and the patients' quality of life.

Wolf-Hirschhorn syndrome is a chromosomal aberration caused by a deletion of the distal short arm of chromosome 4, characterized by distinct craniofacial features, failure to thrive, psychomotor developmental retardation, epilepsy, and feeding disorders. We report a case of patient with Wolf-Hirschhorn syndrome who underwent interventional rehabilitation commencing from the neonatal period in the neonatal intensive care unit. The patient was born at gestational age of 38 weeks 0 days, weighing 1583 g, with an Apgar score of 4/9, and was diagnosed with partial monosomy of the short arm of chromosome 4. Postnatal inspiratory stridor exacerbation was noted for which high-flow nasal cannula therapy was initiated. Rehabilitation commenced on the 18th day after the infant's birth, to promote sensorimotor development. Initially, the trunk was in a low muscle tension and unstable state. Therefore, we first prescribed rest followed by sensorimotor rehabilitation. When the infant's clinical condition stabilized, we performed prone and anti-gravity hugging exercises to improve the low trunk tension. Breastfeeding evaluation began 56 days after birth, when the respiratory condition improved. We practiced feeding the infant orally, in collaboration with doctors and nurses, to reduce bending and stabilize the posture when raising the mandible. The infant was gradually able to feed orally and gained weight. Thereafter, he was discharged 141 days after birth. This report concluded that rehabilitation intervention from the neonatal period, in collaboration with the multidisciplinary team and patient's family, contributed to initiation of oral feeding, improvement of sensorimotor development, and smooth transition to home care.

Wolf-Hirschhorn syndrome is a chromosomal aberration caused by a deletion of the distal short arm of chromosome 4, characterized by distinct craniofacial features, failure to thrive, psychomotor developmental retardation, epilepsy, and feeding disorders. We report a case of patient with Wolf-Hirschhorn syndrome who underwent interventional rehabilitation commencing from the neonatal period in the neonatal intensive care unit. The patient was born at gestational age of 38 weeks 0 days, weighing 1583 g, with an Apgar score of 4/9, and was diagnosed with partial monosomy of the short arm of chromosome 4. Postnatal inspiratory stridor exacerbation was noted for which high-flow nasal cannula therapy was initiated. Rehabilitation commenced on the 18th day after the infant's birth, to promote sensorimotor development. Initially, the trunk was in a low muscle tension and unstable state. Therefore, we first prescribed rest followed by sensorimotor rehabilitation. When the infant's clinical condition stabilized, we performed prone and anti-gravity hugging exercises to improve the low trunk tension. Breastfeeding evaluation began 56 days after birth, when the respiratory condition improved. We practiced feeding the infant orally, in collaboration with doctors and nurses, to reduce bending and stabilize the posture when raising the mandible. The infant was gradually able to feed orally and gained weight. Thereafter, he was discharged 141 days after birth. This report concluded that rehabilitation intervention from the neonatal period, in collaboration with the multidisciplinary team and patient's family, contributed to initiation of oral feeding, improvement of sensorimotor development, and smooth transition to home care.

Congenital myotonic dystrophy is the most severe form of inherited myotonic dystrophy, presenting with generalized muscle weakness, breathing problems, and feeding difficulties. We report a patient with congenital myotonic dystrophy who began rehabilitation early in the neonatal intensive care unit. The mother had myotonic dystrophy and experienced no complications during pregnancy. The patient was born at a gestational age of 38 weeks and 1 day, weighing 2712 g, with an Apgar score of 1/4, and was diagnosed with congenital myotonic dystrophy. Marked generalized hypotonia and respiratory compromise were observed from birth, and the patient was orally intubated and managed with a ventilator. Rehabilitation to promote sensory-motor development was started 13 days after birth. Initially, generalized muscle hypotonia and prominent limitation of joint range of motion were observed. Therefore, joint range of motion exercises, positioning, and rehabilitation of the sensory-motor system were conducted first, while monitoring circulatory and respiratory status. After weaning from the ventilator, feeding evaluation was started on the 123rd day of life. In collaboration with physicians and nurses, feeding volume was increased stepwise to safely introduce oral feeding. The infant gradually became capable of oral intake and was discharged from the hospital on the 160th day of life. In this report, we demonstrated that rehabilitation intervention for infants with congenital myotonic dystrophy from the time of admission to the neonatal intensive care unit contributed to improved motor development, initiation of oral feeding, and smooth discharge.

Spinal muscular atrophy is a neuromuscular disease characterized by muscle atrophy and progressive muscle weakness due to the degeneration of motor neurons in the anterior horn of the spinal cord. We report a case of an adult patient with spinal muscular atrophy type II and difficulty holding a sitting position. The patient was evaluated before and after Nusinersen treatment and thereafter periodically for up to 3 months for motor and daily living functions. At 3 months post-treatment, the Expanded version of the Hammersmith Functional Motor Scale and the Revised Upper Limb Module, which are motor function assessment tools for evaluating spinal muscular atrophy, showed an increase of 2 points. Evaluation of daily functioning using the Canadian occupational performance measure demonstrated improvements in eating and computer finger manipulation, and these improvements were considered important in daily lives by the patient. This report shows that the Nusinersen treatment improved motor and daily life functions in a patient with spinal muscular atrophy and low motor function. The report also concludes that rehabilitation evaluation for spinal muscular atrophy should include a disease-specific assessment of motor function, combined with an assessment focusing on physical symptoms and daily life functions to capture clinical changes that are responsive to individual patients with spinal muscular atrophy.

Spinal muscular atrophy is a neuromuscular disease characterized by muscle atrophy and progressive muscle weakness due to the degeneration of motor neurons in the anterior horn of the spinal cord. We report a case of an adult patient with spinal muscular atrophy type II and difficulty holding a sitting position. The patient was evaluated before and after Nusinersen treatment and thereafter periodically for up to 3 months for motor and daily living functions. At 3 months post-treatment, the Expanded version of the Hammersmith Functional Motor Scale and the Revised Upper Limb Module, which are motor function assessment tools for evaluating spinal muscular atrophy, showed an increase of 2 points. Evaluation of daily functioning using the Canadian occupational performance measure demonstrated improvements in eating and computer finger manipulation, and these improvements were considered important in daily lives by the patient. This report shows that the Nusinersen treatment improved motor and daily life functions in a patient with spinal muscular atrophy and low motor function. The report also concludes that rehabilitation evaluation for spinal muscular atrophy should include a disease-specific assessment of motor function, combined with an assessment focusing on physical symptoms and daily life functions to capture clinical changes that are responsive to individual patients with spinal muscular atrophy.

A secondary analysis of data from national bereavement surveys conducted in 2014, 2016, and 2018 was conducted with the aim of identifying the contribution of various patient and bereavement backgrounds to the outcomes of the Bereavement Survey. The data were evaluated in terms of structure and process of care (CES), achievement of a desirable death (GDI), complexity grief (BGQ), and depression (PHQ-9). The large data set and comprehensive analysis of bereavement survey outcomes clarified the need for adjustment of confounding variables and which variables should be adjusted for in future analyses. Overall, the contribution of the background factors examined in this study to the CES (Adj-R2=0.014) and overall satisfaction (Adj-R2=0.055) was low. The contribution of the GDI (Adj-R2=0.105) was relatively high, and that of the PHQ-9 (Max-rescaled R2=0.200) and BGQ (Max-rescaled R2=0.207) was non-negligible.