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Access to neuropsychologic services after pediatric brain tumor.

https://arctichealth.org/en/permalink/ahliterature106864
Source
Pediatr Neurol. 2013 Dec;49(6):420-3
Publication Type
Article
Date
Dec-2013
Author
Ingrid Tonning Olsson
Sean Perrin
Johan Lundgren
Lars Hjorth
Aki Johanson
Author Affiliation
Department of Psychology, Lund University, Lund, Sweden; Department of Pediatrics, Skåne University Hospital, Lund, Sweden. Electronic address: ingrid.tonning-olsson@skane.se.
Source
Pediatr Neurol. 2013 Dec;49(6):420-3
Date
Dec-2013
Language
English
Publication Type
Article
Keywords
Adolescent
Brain Neoplasms - complications - psychology
Child
Child, Preschool
Cognition Disorders - etiology - rehabilitation
Female
Humans
Infant
Infant, Newborn
Male
Neoplasm Recurrence, Local - complications - psychology
Neuropsychological Tests
Pediatrics
Retrospective Studies
Risk factors
Sweden
Abstract
Increasing survival rates for children with brain tumors creates a greater need for neuropsychologic follow-up and intervention. The aim of this study was to evaluate rates of referral by medical doctors to neuropsychologic services and patient and treatment factors that differentiated referred and nonreferred patients.
Data were retrieved from medical records of all pediatric brain tumor patients in southern Sweden diagnosed between 1993 and 2004 who survived more than 1 year (n = 132). Characteristics of the patients, the cancer, and treatment received were then compared for patients who were and were not referred for neuropsychologic examination during that period.
Sixty-four (48%) of the pediatric brain tumor patients were referred for neuropsychologic evaluation. These patients had significantly larger tumors, more recurrences of cancer, and increased intracranial pressure at diagnosis when compared with the nonreferred group (n = 68). However, most of the patients in the nonreferred group either had significant risk factors for cognitive impairment or were reporting impairments that would suggest a referral was warranted.
Given the high rates of cognitive impairment in children with brain tumors, referral to neuropsychologic services should be considered in all survivors. In addition to improving long-term adjustment, systematic referral can provide data on cognitive impairments, making it possible to evaluate different cancer treatment protocols not only in terms of survival but also in terms of quality of survival. Greater efforts are needed to disseminate and raise awareness about published guidelines on the long-term care of pediatric brain tumor patients.
PubMed ID
24095573 View in PubMed
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Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer.

https://arctichealth.org/en/permalink/ahliterature83040
Source
Pediatr Blood Cancer. 2006 Jun;46(7):773-9
Publication Type
Article
Date
Jun-2006
Author
Hedström Mariann
Kreuger Anders
Ljungman Gustaf
Nygren Peter
von Essen Louise
Author Affiliation
Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala University, Uppsala, Sweden. mariann.hedstrom@pubcare.uu.se
Source
Pediatr Blood Cancer. 2006 Jun;46(7):773-9
Date
Jun-2006
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Anxiety - diagnosis - epidemiology - etiology
Depression - diagnosis - epidemiology - etiology
Female
Health status
Humans
Male
Middle Aged
Neoplasms - complications - psychology
Nurses
Observer Variation
Physicians
Prevalence
Self Assessment (Psychology)
Sensitivity and specificity
Stress, Psychological - diagnosis - epidemiology - etiology
Sweden - epidemiology
Abstract
BACKGROUND: As staff members prioritize medical resources for patients, it is imperative to find out whether their assessments of patients' health status agree with patients' assessments. The degree to which physicians and nurses can identify the distress, anxiety, and depression experienced by adolescents recently diagnosed with cancer was examined here. PROCEDURE: Adolescents undergoing chemotherapy (13-19 years, n = 53), physicians (n = 48), and nurses (n = 53) completed a structured telephone interview, 4-8 weeks after diagnosis or relapse, investigating disease and treatment-related distress, anxiety, and depression. RESULTS: The accuracy of staff ratings of physical distress could be considered acceptable. However, problems of a psychosocial nature, which were frequently overestimated, were difficult for staff to identify. Staff underestimated the distress caused by mucositis and worry about missing school more than they overestimated distress. These aspects were some of the most prevalent and overall worst according to the adolescents. Both physicians and nurses overestimated levels of anxiety and depression. Nurses tended to show higher sensitivity than physicians for distress related to psychosocial aspects of distress, while physicians tended to show higher accuracy than nurses for physical distress. CONCLUSIONS: Staff was reasonably accurate at identifying physical distress in adolescents recently diagnosed with cancer whereas psychosocial problems were generally poorly identified. Thus, the use of staff ratings as a "test" to guide specific support seems problematic. Considering that the accuracy of staff ratings outside a research study is probably lower, identification of and action taken on adolescent problems in relation to cancer diagnosis and treatment need to rely on direct communication.
PubMed ID
16333833 View in PubMed
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Acting with dedication and expertise: Relatives' experience of nurses' provision of care in a palliative unit.

https://arctichealth.org/en/permalink/ahliterature276448
Source
Palliat Support Care. 2015 Dec;13(6):1547-58
Publication Type
Article
Date
Dec-2015
Author
Å. Grøthe
Stian Biong
E K Grov
Source
Palliat Support Care. 2015 Dec;13(6):1547-58
Date
Dec-2015
Language
English
Publication Type
Article
Keywords
Death
Family - psychology
Family Relations - psychology
Female
Hospitalization
Humans
Neoplasms - complications - psychology
Norway
Nurses - standards
Palliative Care - methods - standards
Qualitative Research
Abstract
Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward.
A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background.
Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is "acting with dedication and expertise."
The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.
PubMed ID
24182691 View in PubMed
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Advanced cancer patients' self-assessed physical and emotional problems on admission and discharge from hospital general wards--a questionnaire study.

https://arctichealth.org/en/permalink/ahliterature125804
Source
Eur J Cancer Care (Engl). 2012 Sep;21(5):667-76
Publication Type
Article
Date
Sep-2012
Author
L. Soelver
B. Oestergaard
S. Rydahl-Hansen
L. Wagner
Author Affiliation
Department of Surgery K, Bispebjerg Hospital, Bispebjeg Bakke 23, Copenhagen, Denmark. lsoe0012@bbh.regionh.dk
Source
Eur J Cancer Care (Engl). 2012 Sep;21(5):667-76
Date
Sep-2012
Language
English
Publication Type
Article
Keywords
Aged
Aged, 80 and over
Denmark
Diarrhea - etiology - therapy
Female
Hospitalization - statistics & numerical data
Hospitals, General - standards - statistics & numerical data
Humans
Male
Middle Aged
Neoplasms - complications - psychology - therapy
Pain - etiology
Pain Management - standards
Palliative Care - standards
Patient Discharge - statistics & numerical data
Prospective Studies
Questionnaires
Stress, Psychological - etiology - therapy
Terminally ill
Abstract
Most cancer patients receiving life-prolonging or palliative treatment are offered non-specialist palliative services. There is a lack of knowledge about their problem profile. The aim of this article is to describe the incidence of patient-reported physical and emotional problems on admission and discharge from general hospital wards and health staff's reported intervention. A prospective study was undertaken over 12 months, where advanced cancer patients completed a patient questionnaire, EORTC QLQ C15-PAL, on admission (n= 97) and discharge (n= 46). The incidences of the problems were dichotomised in intensity categories. The average number of 'clinically relevant problems' on admission was 5 (SD 2) and on discharge 4 (SD 2). A Wilcoxon signed rank test showed significant change in mean score for six out of nine problem areas, but the majority of the patients did not move to the lower intensity category. The highest concurrence was between patient-reported problems and reported intervention for physical function, pain, constipation and loss of appetite. Palliative cancer patients' self-reported problem profile on admission and discharge from hospital has not previously been described and the results indicate a need to focus on improvements to palliative services and for a special service for pain and constipation that could prevent some admissions.
PubMed ID
22452383 View in PubMed
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The Alberta moving beyond breast cancer (AMBER) cohort study: a prospective study of physical activity and health-related fitness in breast cancer survivors.

https://arctichealth.org/en/permalink/ahliterature118960
Source
BMC Cancer. 2012;12:525
Publication Type
Article
Date
2012
Author
Kerry S Courneya
Jeff K Vallance
S Nicole Culos-Reed
Margaret L McNeely
Gordon J Bell
John R Mackey
Yutaka Yasui
Yan Yuan
Charles E Matthews
David Cw Lau
Diane Cook
Christine M Friedenreich
Author Affiliation
Faculty of Physical Education and Recreation, University of Alberta, Edmonton, Canada. kerry.courneya@ualberta.ca
Source
BMC Cancer. 2012;12:525
Date
2012
Language
English
Publication Type
Article
Keywords
Alberta
Breast Neoplasms - complications - psychology
Cohort Studies
Exercise
Female
Health status
Humans
Physical Fitness
Quality of Life
Research Design
Self Report
Survivors
Abstract
Limited research has examined the association between physical activity, health-related fitness, and disease outcomes in breast cancer survivors. Here, we present the rationale and design of the Alberta Moving Beyond Breast Cancer (AMBER) Study, a prospective cohort study designed specifically to examine the role of physical activity and health-related fitness in breast cancer survivorship from the time of diagnosis and for the balance of life. The AMBER Study will examine the role of physical activity and health-related fitness in facilitating treatment completion, alleviating treatment side effects, hastening recovery after treatments, improving long term quality of life, and reducing the risks of disease recurrence, other chronic diseases, and premature death.
The AMBER Study will enroll 1500 newly diagnosed, incident, stage I-IIIc breast cancer survivors in Alberta, Canada over a 5 year period. Assessments will be made at baseline (within 90 days of surgery), 1 year, and 3 years consisting of objective and self-reported measurements of physical activity, health-related fitness, blood collection, lymphedema, patient-reported outcomes, and determinants of physical activity. A final assessment at 5 years will measure patient-reported data only. The cohort members will be followed for an additional 5 years for disease outcomes.
The AMBER cohort will answer key questions related to physical activity and health-related fitness in breast cancer survivors including: (1) the independent and interactive associations of physical activity and health-related fitness with disease outcomes (e.g., recurrence, breast cancer-specific mortality, overall survival), treatment completion rates, symptoms and side effects (e.g., pain, lymphedema, fatigue, neuropathy), quality of life, and psychosocial functioning (e.g., anxiety, depression, self-esteem, happiness), (2) the determinants of physical activity and health-related fitness including demographic, medical, social cognitive, and environmental variables, (3) the mediators of any observed associations between physical activity, health-related fitness, and health outcomes including biological, functional, and psychosocial, and (4) the moderators of any observed associations including demographic, medical, and biological/disease factors. Taken together, these data will provide a comprehensive inquiry into the outcomes, determinants, mechanisms, and moderators of physical activity and health-related fitness in breast cancer survivors.
Notes
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PubMed ID
23153358 View in PubMed
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An examination of physical activity behaviors in a sample of adolescent cancer survivors.

https://arctichealth.org/en/permalink/ahliterature169687
Source
J Pediatr Oncol Nurs. 2006 May-Jun;23(3):135-42
Publication Type
Article
Author
Melanie R Keats
S Nicole Culos-Reed
Kerry S Courneya
Mary McBride
Author Affiliation
Faculty of Kinesiology, University of Calgary, Alberta, Canada.
Source
J Pediatr Oncol Nurs. 2006 May-Jun;23(3):135-42
Language
English
Publication Type
Article
Keywords
Adaptation, Psychological
Adolescent
Adolescent Behavior - psychology
Adolescent Psychology
Alberta
Attitude to Health
Body mass index
Cross-Sectional Studies
Exercise
Female
Health Behavior
Humans
Leisure Activities
Male
Neoplasms - complications - psychology - therapy
Nursing Methodology Research
Oncology Nursing
Pediatric Nursing
Questionnaires
Sampling Studies
Survivors - psychology
Abstract
With a growing consensus of the importance of physical activity across a number of health outcomes, the current study investigated the impact of a cancer diagnosis on adolescent physical activity behavior. Participants (n=97) completed a mailed, self-administered questionnaire in which they recalled their physical activity behaviors across the cancer experience. Examination of the data revealed that adolescents treated for cancer experience significant declines in physical activity that are not recovered following treatment completion. It is not clear if the sustained reduction in posttreatment physical activity is attributable to the lingering effects of cancer treatment, but the long-term implications of a reduction in physical activity may be far-reaching.
PubMed ID
16624889 View in PubMed
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Aspects of posttraumatic stress disorder in long-term testicular cancer survivors: cross-sectional and longitudinal findings.

https://arctichealth.org/en/permalink/ahliterature286210
Source
J Cancer Surviv. 2016 Oct;10(5):842-9
Publication Type
Article
Date
Oct-2016
Author
Alv A Dahl
Marie Østby-Deglum
Jan Oldenburg
Roy Bremnes
Olav Dahl
Olbjørn Klepp
Erik Wist
Sophie D Fosså
Source
J Cancer Surviv. 2016 Oct;10(5):842-9
Date
Oct-2016
Language
English
Publication Type
Article
Keywords
Adult
Cross-Sectional Studies
Female
Humans
Longitudinal Studies
Male
Middle Aged
Norway - epidemiology
Prevalence
Prognosis
Stress Disorders, Post-Traumatic - diagnosis - epidemiology - etiology
Surveys and Questionnaires
Survivors - psychology
Testicular Neoplasms - complications - psychology - therapy
Abstract
The purpose of this research is to study the prevalence of posttraumatic stress disorder (PTSD) and variables associated with PTSD in Norwegian long-term testicular cancer survivors (TCSs) both cross-sectionally and longitudinally.
At a mean of 11 years after diagnosis, 1418 TCSs responded to a mailed questionnaire, and at a mean of 19 years after diagnosis, 1046 of them responded again to a modified questionnaire. Posttraumatic symptoms related to testicular cancer were self-rated with the Impact of Event Scale (IES) at the 11-year study only. An IES total score =35 defined Full PTSD, and a score 26-34 identified Partial PTSD, and the combination of Full and Partial PTSD defined Probable PTSD.
At the 11-year study, 4.5 % had Full PTSD, 6.4 % had Partial PTSD, and 10.9 % Probable had PTSD. At both studies, socio-demographic variables, somatic health, anxiety/depression, chronic fatigue, and neurotoxic adverse effects were significantly associated with Probable PTSD in bivariate analyses. Probable anxiety disorder, poor self-rated health, and neurotoxicity remained significant with Probable PTSD in multivariate analyses at the 11-year study. In bivariate analyses, probable PTSD at that time significantly predicted socio-demographic variables, somatic health, anxiety/depression, chronic fatigue, and neurotoxicity among participants of the 19-year study, but only probable anxiety disorder remained significant in multivariable analysis.
In spite of excellent prognosis, 10.9 % of long-term testicular cancer survivors had Probable PTSD at a mean of 11 years after diagnosis. Probable PTSD was significantly associated with a broad range of problems both at that time and was predictive of considerable problems at a mean of 19 year postdiagnosis.
Among long-term testicular cancer survivors, 10.9 % have Probable PTSD with many associated problems, and therefore health personnel should explore stress symptoms at follow-up since efficient treatments are available.
PubMed ID
26920871 View in PubMed
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Barriers to cancer pain management in Danish and Lithuanian patients treated in pain and palliative care units.

https://arctichealth.org/en/permalink/ahliterature258956
Source
Pain Manag Nurs. 2014 Mar;15(1):51-8
Publication Type
Article
Date
Mar-2014
Author
Ramune Jacobsen
Jurgita Samsanaviciene
Zita Liubarskiene
Per Sjøgren
Claus Møldrup
Lona Christrup
Arunas Sciupokas
Ole Bo Hansen
Source
Pain Manag Nurs. 2014 Mar;15(1):51-8
Date
Mar-2014
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Analgesics, Opioid - administration & dosage - adverse effects
Anxiety - psychology
Chronic Pain - etiology - psychology - therapy
Denmark
Depression - psychology
Female
Humans
Lithuania
Male
Medication Adherence - psychology
Middle Aged
Multivesicular Bodies
Neoplasms - complications - psychology
Pain Clinics
Pain Management - methods
Pain Measurement
Palliative Care - methods
Abstract
The prevalence of cancer-related pain is high despite available guidelines for the effective assessment and management of that pain. Barriers to the use of opioid analgesics partially cause undertreatment of cancer pain. The aim of this study was to compare pain management outcomes and patient-related barriers to cancer pain management in patient samples from Denmark and Lithuania. Thirty-three Danish and 30 Lithuanian patients responded to, respectively, Danish and Lithuanian versions of the Brief Pain Inventory pain scale, the Barriers Questionnaire II, the Hospital Anxiety and Depression Scale, the Specific Questionnaire On Pain Communication, and the Medication Adherence Report Scale. Emotional distress and patient attitudes toward opioid analgesics in cancer patient samples from both countries explained pain management outcomes in the multivariate regression models. Pain relief and pain medication adherence were better in Denmark, and the country of origin significantly explained the difference in the regression models for these outcomes. In conclusion, interventions in emotional distress and patient attitudes toward opioid analgesics may result in better pain management outcomes generally, whereas poor adherence to pain medication and poor pain relief appear to be more country-specific problems.
PubMed ID
24602424 View in PubMed
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Cancer-related pain in palliative care: patients' perceptions of pain management.

https://arctichealth.org/en/permalink/ahliterature17943
Source
J Adv Nurs. 2004 Feb;45(4):410-9
Publication Type
Article
Date
Feb-2004
Author
Barbro Boström
Marie Sandh
Dag Lundberg
Bengt Fridlund
Author Affiliation
School of Social and Health Sciences, Halmstad University, Halmstad, Sweden. barbro.bostrom@hos.hh.se
Source
J Adv Nurs. 2004 Feb;45(4):410-9
Date
Feb-2004
Language
English
Publication Type
Article
Keywords
Adult
Aged
Aged, 80 and over
Attitude to Health
Communication
Female
Hospitals
Humans
Male
Middle Aged
Needs Assessment
Neoplasms - complications - psychology - therapy
Pain - psychology - therapy
Pain Measurement
Pain threshold
Palliative Care - methods
Patient satisfaction
Professional-Patient Relations
Sweden
Abstract
BACKGROUND: Pain is still a significant problem for many patients with cancer, despite numerous, clear and concise guidelines for the treatment of cancer-related pain. The impact of pain cognition on patients' experiences of cancer-related pain remains relatively unexplored. AIM: The aim of this study was to describe how patients with cancer-related pain in palliative care perceive the management of their pain. METHOD: Thirty patients were strategically selected for interviews with open-ended questions, designed to explore the pain and pain management related to their cancer. The interviews were analysed using a phenomenographic approach. FINDINGS: Patients described 10 different perceptions of pain and pain management summarized in the three categories: communication, planning and trust. In terms of communication, patients expressed a need for an open and honest dialogue with health care professionals about all problems concerning pain. Patients expressed an urgent need for planning of their pain treatment including all caring activities around them. When they felt trust in the health care organization as a whole, and in nurses and physicians in particular, they described improved ability and willingness to participate in pain management. While the findings are limited to patients in palliative care, questions are raised about others with cancer-related pain without access to a palliative care team. CONCLUSION: The opportunity for patients to discuss pain and its treatment seems to have occurred late in the course of disease, mostly not until coming in contact with a palliative care team. They expressed a wish to be pain-free, or attain as much pain relief as possible, with as few side effects as possible.
PubMed ID
14756835 View in PubMed
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Cancer-related symptom assessment in Russia: validation and utility of the Russian M. D. Anderson Symptom Inventory.

https://arctichealth.org/en/permalink/ahliterature171805
Source
J Pain Symptom Manage. 2005 Nov;30(5):443-53
Publication Type
Article
Date
Nov-2005
Author
Maria O Ivanova
Tatyana I Ionova
Svetlana A Kalyadina
Olga S Uspenskaya
Anton V Kishtovich
Hong Guo
Tito R Mendoza
Andrei Novik
Charles S Cleeland
Xin S Wang
Author Affiliation
National Cancer Research and Treatment Center, St. Petersburg, Russia.
Source
J Pain Symptom Manage. 2005 Nov;30(5):443-53
Date
Nov-2005
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Aged, 80 and over
Female
Health Surveys
Humans
Language
Male
Middle Aged
Neoplasms - complications - psychology
Reproducibility of Results
Russia
Severity of Illness Index
Abstract
This multicenter cross-sectional study (n=226) validated the Russian-language M. D. Anderson Symptom Inventory (MDASI-R) in Russian cancer patients with hematological malignancies or solid tumors. The Russian-language Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36-R) also was used for validation. Factor analysis found three underlying constructs for symptom items--general, treatment-related, and affective symptoms--with Cronbach alphas of 0.86, 0.68, and 0.90, respectively. Convergent validity was established by comparing MDASI-R items with SF-36-R subscales. The MDASI-R detected significant differences in symptom severity and interference levels by performance status, supporting known-group validity. The most prevalent symptoms were fatigue, sleep disturbance, pain, sadness, and poor appetite; 53% of the sample reported one to four moderate-to-severe symptoms (>or=5 on 0-10 scale). Symptoms interfered most with work and general activity. Medical professionals underestimated the severity of pain, fatigue, and distress. The MDASI-R is valid and reliable for measuring symptom severity and interference in Russian cancer patients.
PubMed ID
16310618 View in PubMed
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