This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between ...need fulfilment and grief. Possible differences between parents of children who died of cancer versus a non-cancer disease were explored.
This exploratory study, conducted in two specialist paediatric palliative care facilities, included parents who had lost a child within a period of 0.5 to 8 years before this investigation. From the bereavement perspective, parents reported their needs during paediatric palliative care using the Family Inventory of Needs - Peadiatric II (FIN-PED II). Utilisation of psychosocial support services during paediatric palliative care and after the child's death, as well as potential barriers to accessing services were assessed. Grief symptoms were measured using the Inventory of Complicated Grief - German Version (ICG-D).
Overall, 56 of 157 approached parents participated in the study. Mean time interval after the child's death was 3.2 years. Of the 17 FIN-PED II needs, 13 needs were reported to be very/extremely important to more than 75% of the parents each. Highest ranked needs related to asking questions at any time (100%), sincere care for the child (100%), and information about changes in the child's condition (98%). The highest ranked unmet needs related to hope (61%), interactions with siblings (41-42%), and trust in the health care system (39%). Comparisons showed no significant differences between parents whose child died of cancer (n = 18) versus a non-cancer disease (n = 38). During paediatric palliative care, 61% of the parents had accessed at least one psychosocial support service and 84% had done so after the child's death. The most prominent barriers for accessing services were sufficient informal support (38%), no subjective need (23%), and lack of time (20%). Overall, 52% of the parents showed noticeable symptoms for complicated grief (ICG-D > 25). A higher level of grief symptoms significantly correlated with a lower fulfilment of the need to say goodbye to the child (p = .042) with a medium correlational effect.
Our findings may help to guide health care professionals in their assessment of parental needs and provision of support to parents during paediatric palliative care.
In patients with metastatic nonseminomatous germ cell cancer (NSGCT), residual masses after chemotherapy (CTX) can consist of vital carcinoma, mature teratoma, or necrosis. This prospective trial has ...evaluated the accuracy of (18)Ffluorodeoxyglucose positron emission tomography (FDG-PET) for the prediction of histology compared with computed tomography (CT) and serum tumor markers (STM).
A total of 121 patients with stage IIC or III NSGCT scheduled for secondary resection after cisplatin-based CTX were included. FDG-PET was performed after completion of CTX. All results were confirmed by histopathology and correlated to STM and CT.
Prediction of tumor viability with FDG-PET was correct in 56%, which did not reach the expected clinically relevant level of 70%, and was not better than the accuracy of CT (55%) or STM (56%). Sensitivity and specificity of FDG-PET were 70% and 48%. The positive predictive values were not significantly different (55%, 61%, and 59% for CT, STM, and PET, respectively). Judging only vital carcinoma as a true malignant finding, the negative predictive value increased to 83% for FDG-PET.
The presence of vital carcinoma and mature teratoma is common (55%) in residual masses in patients with NSGCT, and CT and STM cannot reliably predict absence of disease. In contrast to prior studies, this prospective trial, which is the only with histologic confirmation in all patients, demonstrated that FDG-PET is unable to give a clear additional clinical benefit to the standard diagnostic procedures, CT and STM, in the prediction of tumor viability in residual masses.
Personal last wishes of people facing a life-limiting illness may change closer to death and may vary across different forms of specialist palliative care (SPC).
To explore the presence and common ...themes of last wishes over time and according to the SPC settings (inpatient vs. home-based SPC), and to identify factors associated to having a last wish.
Patients enrolled in a longitudinal study completed questionnaires at the onset (baseline, t
) and within the first 6 weeks (follow-up, t
) of SPC including an open-ended question on their personal last wishes. Last wishes were content analyzed, and all wishes were coded for presence or absence of each of the identified themes. Changes of last wishes (t
-t
) were analyzed by a McNemar test. The chi-square-test was used to compare the two SPC settings. Predictors for the presence of a last wish were identified by logistic regression analysis.
Three hundred sixty-one patients (mean age, 69.5 years; 49% female) answered at t
, and 130 at t
. In cross-sectional analyses, the presence of last wishes was higher at t
(67%) than at t
(59%). Comparisons revealed a higher presence of last wishes among inpatients than those in home-based SPC at t
(78% vs. 62%; p = .002), but not at t
. Inpatient SPC (OR = 1.987, p = .011) and greater physical symptom burden over the past week (OR = 1.168, p < .001) predicted presence of a last wish at t
. Common themes of last wishes were Travel, Activities, Regaining health, Quality of life, Being with family and friends, Dying comfortably, Turn back time, and Taking care of final matters. The most frequent theme was Travel, at both t
(31%) and t
(39%). Themes did not differ between SPC settings, neither at t
nor at t
. Longitudinal analyses (t
-t
) showed no significant intra-personal changes in the presence or any themes of last wishes over time.
In this late phase of their illness, many patients voiced last wishes. Our study suggests working with such wishes as a framework for person-centered care. Comparisons of SPC settings indicate that individualized approaches to patients' last wishes, rather than setting-specific approaches, may be important.
Hospitals are globally an important place of care for dying people and the most frequent place of death in Germany (47%), but at the same time, the least preferred one - for both patients and their ...relatives. Important indicators and outcome variables indexing quality of care in the dying phase are available, and various proposals to achieve corresponding quality objectives exist. However, they are not yet sufficiently adapted to the heterogeneous needs of individual hospital wards.
This multi-centre single-arm pre-post study aims at the development and implementation of context-specific measures in everyday clinical practice, followed by evaluating this approach. Therefore, (1) already existing measures regarding optimal care in the dying phase are identified applying a systematic literature review as well as an online survey and a symposium with experts. Supported by the thereby generated collection of measures, (2) a stratified sample of ten teams of different wards from two university hospitals select suitable measures and implement them in their everyday clinical practice. Circumstances of patients' deaths on the selected wards are recorded twice, at baseline before application of the self-chosen measures and afterwards in a follow-up survey. Retrospective file analysis of deceased persons, quantitative staff surveys as well as qualitative multi-professional focus groups and interviews with relatives form the data basis of the pre-post evaluation. (3) Results are reviewed regarding their transferability to other hospitals and disseminated (inter-)nationally.
Measures that are easy to implement and appropriate to the specific situation are supposed to significantly improve the quality of care during the dying phase in hospitals and contribute to the well-being of dying patients and their relatives. Successful implementation of those measures requires consideration of the individual conditions and needs of patients and their relatives-but also of the health professionals-on the different hospital wards. Therefore, a bottom-up approach, in which the ward-specific situation is first analysed in detail and then the staff itself selects and implements measures to improve care, appears most promising for optimising care in the dying phase in hospitals.
The study is registered in the German Clinical Trials Register ( DRKS00025405 ).
Previous symptom prevalence studies show a diverse spectrum of symptoms and a large diversity in symptom intensities in patients being just diagnosed as having incurable cancer. It is unclear, how ...physical symptoms and psychosocial burden should be recorded in order to determine the variable need for palliative care and further support. Therefore, we compared two different strategies for detecting physical symptoms and psychosocial burden of patients with newly diagnosed incurable cancer and their effects on the further course of the disease.
SCREBEL is a controlled, randomized, non-blinded, longitudinal study of the research network of the Palliative Medicine Working Group (APM) of the German Cancer Society (DKG). We compared: a less complex repeated brief
for symptoms and burden in patients using the NCCN Distress Thermometer and IPOS questionnaire versus a multidimensional comprehensive
using the FACT-G and their entity-specific questionnaires, the PHQ4 scales, SCNS-34-SF, IPOS and NCCN Distress Thermometer. The primary study endpoint was quality of life (QoL), measured using FACT-G, after six months. Secondary study endpoints were QoL by using evaluation of secondary scores (NCCN DT, IPOS, PHQ4, SCNS-SF-34G) at time 6 months, the number of hospital days, the utilization of palliative care, emergency services, and psychosocial care structures. To assess effects and differences, multiple linear regression models were fitted and survival analyses were conducted.
504 patients were included in the study. 262 patients were lost to follow-up, including 155 fatalities. There were no significant differences between the low-threshold
approach and a comprehensive
with respect to symptoms and other aspects of QoL. Using the IPOS, we were able to measure an improvement in the quality of life in the low-threshold
arm by a decrease of 0.67 points (95%-CI: 0.34 to 0.99) every 30 days. (p<0.001). Data on the involvement of emergency facilities and on supportive services were insufficient for analysis.
A comprehensive, multidimensional
did not significantly differ from brief
in preserving several dimensions of quality of life. These findings may positively influence the implementation of structured low-threshold screening programs for supportive and palliative needs in DKG certified cancer centers.DRKS -No. DRKS00017774 https://drks.de/search/de/trial/DRKS00017774.
Abstract
Background
We investigated the need for additional professional support and associated factors in patients (pts) at initiation and in the course of in- and outpatient specialist palliative ...care (I-SPC/O-SPC).
Methods
Pts entering an urban SPC network consecutively completed questionnaires on psychosocial/spiritual problems and support needs within 72 h (T0) as well as within the first 6 weeks (T1) of SPC. Hierarchical linear regression analysis was used to investigate the impact of sociodemographic / disease-related variables, psychological / physical burden, social support, and SPC setting on the extent of support needs.
Results
Four hundred twenty-five pts (70 years, 48% female, 91% cancer, 67% O-SPC) answered at T0, and 167 at T1. At T0, main problems related to transportation, usual activities, and dependency (83–89%). At T1, most prevalent problems also related to transportation and usual activities and additionally to light housework (82–86%). At T0, support needs were highest for transportation, light housework, and usual activities (35–41%). Cross-sectional comparisons of SPC settings revealed higher problem scores in O-SPC compared to I-SPC at T0 (
p
= .039), but not at T1. Support need scores were higher in O-SPC at T0 (
p
< .001), but lower at T1 (
p
= .039). Longitudinal analyses showed a decrease of support need scores over time, independent from the SPC setting. At T0, higher distress (
p
= .047), anxiety/depression (
p
< .001), physical symptom burden (
p
< .001) and I-SPC (
p
< .001) were associated with higher support need scores (at T1: only higher distress,
p
= .037).
Conclusion
Need for additional professional psychosocial/spiritual support was identified in up to 40% of pts. with higher need at the beginning of O-SPC than of I-SPC. During SPC, this need decreased in both settings, but got lower in O-SPC than in I-SPC over time. Support need scores were not only associated with psychological, but also physical burden.
Abstract
Background
Specialist palliative care (SPC) includes care for incurably ill patients and their family caregivers at home or on a palliative care ward until the very end of life. However, in ...the last days of life, patients can rarely express their needs and little is known about SPC outcomes as reported by multiprofessional SPC teams and family caregivers.
Methods
Using the Palliative Care Outcome Scale (POS; Score 0–40), proxy assessments of SPC outcomes in the patient’s last 3 days of life were performed by SPC teams and primary family caregivers of three home care and three inpatient services. Additional questions were asked about problems solved ‘particularly well’ or ‘inadequately’ (last 7 days), which were content analyzed and quantified.
Results
Proxy assessments by SPC teams were available in 142 patients (of whom 51% had died at home). Family caregiver assessments exist for a subgroup of 60 of these patients. SPC teams (POS total score: mean 13.8, SD 6.3) reported SPC outcomes slightly better than family caregivers (mean 16.7, SD 6.8). The POS items consistently rated as least affected (= 0) by both, SPC teams and family caregivers, were ‘not wasted time’ (team 99%/family caregivers 87%), ‘information’ (84%/47%) and ‘support’ (53%/31%). Items rated as most affected (= 4) were ‘patient anxiety’ (31%/51%), ‘life not worthwhile’ (26%/35%) and ‘no self-worth’ (19%/30%). Both groups indicated more problems solved ‘particularly well’ than ‘inadequately’; the latter concerned mainly clinically well-known challenges during end-of-life care and family caregiver care.
Conclusions
This study shows the range and type of symptoms and other concerns reported in the patient’s last days. Starting points for further improvements in family caregiver care and psychosocial and spiritual issues were identified.
Angehörige Sterbender sind einerseits Teil des Versorgungssystems der Sterbenden, andererseits sind sie auch Betroffene mit eigenen Sorgen und Ängsten. Die Probleme, Bedürfnisse und Aufgaben der ...Angehörigen variieren dabei auch in Anhängigkeit vom Versorgungsort der Sterbenden. Zudem unterscheiden sich die Erwartungen der Angehörigen daran, was eine „gute“ Sterbesituation ausmacht, je nach Versorgungsform, ob Zuhause, im Hospiz, auf Palliativstationen, im Krankenhaus oder Pflegeheim.
Zusammenfassung
Angehörige Sterbender sind einerseits Teil des Versorgungssystems der Sterbenden, andererseits sind sie auch Betroffene mit eigenen Sorgen und Ängsten. Die Probleme, Bedürfnisse und ...Aufgaben der Angehörigen variieren dabei auch in Anhängigkeit vom Versorgungsort der Sterbenden. Zudem unterscheiden sich die Erwartungen der Angehörigen daran, was eine „gute“ Sterbesituation ausmacht, je nach Versorgungsform, ob Zuhause, im Hospiz, auf Palliativstationen, im Krankenhaus oder Pflegeheim.
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