http://congres.sfap.org/sites/default/files/pdf/Lille2013/SP1.pdf

http://congres.sfap.org/sites/default/files/pdf/Lille2013/SP1.pdf

Dan Med Bull. 2010 Sep;57(9):B4184.

Health-related quality of life in early breast cancer.

Groenvold M1.

Abstract

The treatment of primary breast cancer usually consists of surgery often followed by adjuvant therapy (radiotherapy, chemotherapy, hormonal treatment, etc.) to reduce the risk of recurrence. The cancer diagnosis and the treatments may have significant impact on the patients' quality of life. This thesis deals with scientific aspects and clinical results of a study aimed at assessing the impact of breast cancer (and its treatment) on the patients' quality of life. Studies such as this assessing the problems and symptoms experienced by the patients are often referred to as health-related quality of life (HRQL) research. HRQL research deals with subjective experiences and raises challenging, scientific questions. Therefore, much attention was directed towards methodological issues in this clinically motivated project. The study was a prospective, longitudinal, questionnaire-based investigation of women with newly diagnosed breast cancer registered in the Danish Breast Cancer Co-operative Group's DBCG 89 Program. The patients were sub-divided into low-risk and high-risk patients. High-risk patients were offered randomisation in one of three randomised adjuvant therapy trials involving chemotherapy, ovarian ablation, and endocrine therapy. After a literature study and interviews with breast cancer patients, a questionnaire was composed that included two widely used standard questionnaires (EORTC QLQ-C30 and Hospital Anxiety and Depression (HAD) Scale) and a DBCG 89 Questionnaire developed for this study. A total of 1,898 eligible patients were invited by post to participate in the study involving six assessments over a 2-year period, and 1,713 patients (90%) completed the first questionnaire. Furthermore, a questionnaire was sent to 872 women selected at random from the general population; 608 (70%) responded. The multi-item scales of the two standard questionnaires were analysed for so-called differential item functioning (DIF) in order to investigate whether the (summary) scale scores were adequate representations of the information obtained by the individual items. The DIF analyses identified a number of cases of DIF, which, among other things, contributed to detection of possible problems in the HAD Scale. It was concluded that DIF analyses are relevant when important analyses based on multi-item scales are made. A new way to evaluate the validity of questionnaires was developed. The results from questionnaires completed by patients were compared against results from open ended interviews with the same patients rated by observers. The idea was that if results were similar, the patients had then probably understood and completed the questionnaire items as intended. On the other hand, if results from self-assessment and interviews deviated, misunderstandings or other errors might have taken place, and the study would give insight into possible problems. Of 57 breast cancer patients, 46 (81%) were successfully interviewed. In general, the agreement between patient-completed questionnaires and interviews was excellent, indicating very good validity. The median weighted kappa for the EORTC QLQ-C30 was 0.85 (range 0.49-1.00); it was 0.79 (range 0.65-0.95) for the HAD Scale, and 0.92 (range 0.51-1.00) for the DBCG 89 Questionnaire. However, the study identified a mechanism called selective reporting, which may affect results from most HRQL questionnaires: in order to provide correct and useful answers some patients do not report symptoms they believe are irrelevant to the study, e.g., symptoms unrelated to cancer. This mechanism may lead to bias if results from patients are compared to results from populations reporting their symptoms more completely, e.g., general population samples. In contrast, this mechanism has little importance when results from different sub-groups of cancer patients are compared. In this study multiple variables were assessed at multiple points in time and we did not have a priori hypotheses for all these potential comparisons. Therefore, a staff survey involving experienced doctors and nurses was conducted in order to generate hypotheses that could be tested in the data from patients. We contacted 46 health care professionals and 36 (78%) responded. Overall, the staff survey did not prove very useful for the intended purpose. The main reason for this was probably that the health care professionals had limited insight into the patients' HRQL. A different approach to the problem of multiple hypothesis testing proved more useful. Hypotheses generated from the initial literature review were tested in the comparison of patients in chemotherapy against patients not in chemotherapy. The study of women selected at random from the general population showed that these women experienced a considerable degree of "morbidity" according to all three questionnaires. This shows that symptoms and problems reported by cancerpatients may have causes other than cancer, and thus constitutes a good justification for the use of data from general population studies when interpreting data from cancer patients. The levels of anxiety and depression of low-risk breast cancer patients were found to be lower than those from the general population sample. After careful consideration we concluded that this finding was probably incorrect. The most important explanations were thought to be the wording of some HAD Scale items as well as two mechanisms that are not specific to the HAD Scale, the "selective reporting mechanism" found in the validation study, and the response-shift problem. These findings indicate - in contrast to the conclusion above - that the comparability of HRQL data from cancer patients and general population data must be questioned. However, as this is the first study to raise the problem, this issue needs further investigation. Based on the initial literature review and interviews we hypothesised that 30 different HRQL issues would be impaired in patients undergoing CMF chemotherapy compared to patients not in chemotherapy; 23 of these hypotheses were confirmed. In addition, our study and other research suggest that other HRQL aspects may also be affected by chemotherapy. Thus, there is considerable evidence that patients in chemotherapy may experience effects on a wide spectrum of HRQL issues. Most other studies have assessed surprisingly few of the HRQL issues shown in our study to be impaired in patients receiving chemotherapy. Similarly, current review articles on HRQL effects of adjuvant chemotherapy mention only relatively few of these topics. Concerning HRQL after the treatment period, our main finding was that many symptoms and problems had declined or disappeared, but some persisted: anticipatory nausea, weight gain, endocrine effects (e.g., hot flushes/sweats, irregular bleedings/amenorrhea, vaginal dryness), disturbed sleep, and sexual dysfunction. These findings are in agreement with the literature. The staff study showed that experienced physicians and nurses did not expect many of the "scientifically well documented" consequences of chemotherapy. Taken together, our findings suggest that information to patients about chemotherapy should be more comprehensive than that which has been practised in most places. When compared against ovarian ablation, chemotherapy was associated with more impact on HRQL during the treatment period; only hot flushes/sweats were more pronounced in the ovarian ablation group. Thus, from an overall "HRQL perspective" ovarian ablation or suppression may be preferable. However, younger women may preserve their premenopausal status (including fertility) by having chemotherapy, and this may be an argument for chemotherapy or for temporary ovarian ablation via goserelin, rather than permanent ovarian ablation. Furthermore, while ovarian ablation/suppression may be preferable because of less impairment of HRQL, contemporary chemotherapeutic regimens may be more effective. These results indicate that for some patients, the HRQL data and results on treatment efficiency may be in conflict. There is no simple, universally correct solution to this dilemma. More research into patients' views and expectations to the health-care system in cases where medical decision-making involves complex trade-offs between treatment efficiency and HRQL issues is needed. Contrary to expectations, the analyses showed that fatigue and emotional function predicted the risk of recurrence and death independently of biological and clinical prognostic variables. In multivariate Cox regression analyses patients who were more fatigued or had poorer emotional function had a worse prognosis. These results are consistent with one small study, but are inconsistent with five similar studies in patients with primary breast cancer, which found no such associations. The reasons for these important differences are currently unknown. In conclusion, this study consisted of methodological and clinical investigations of HRQL in primary breast cancer patients. The initial questionnaire development resulted in a combination of questionnaires that was more comprehensive than in other similar studies. The results of the methodological studies generally supported the validity of the questionnaires but also gave important insights into potential scientific problems that are probably not restricted to the present study. These insights helped to prevent misinterpretations of the clinical data. The study provided the most detailed description of HRQL during and after breast cancer adjuvant chemotherapy to date, and compared results of chemotherapy against ovarian ablation. It also provided controversial results concerning the prognostic value of HRQL data. The combination of a large empirical study and several methodological sub-studies thus proved useful and gave new results.

http://kcur.org/post/death-and-dying-expanding-palliative-care

Death And Dying: Expanding Palliative Care

By MIKE SHIELDS • JUL 10, 2015

Editor’s note: On Wednesday, Medicare, announced that it would reimburse doctors for end-of-life counseling. It’s part of an emerging conversation about end-of-life issues and the policy changes needed to give people more control over what happens to them in their final days. This three-part series of stories by KHI News Service, and a video produced in partnership with Kansas City public television station KCPT, is about that conversation and the role that experts at two regional institutions are playing in it. The first story in the series focuses on efforts to encourage end-of-life discussions and the thirdon the push to enact state laws allowing terminally ill patients to receive a doctor’s aid in dying.

Palliative care's dying with dignity

By Edward B. Scharfenberger, Commentary

Published 6:51 pm, Tuesday, July 7, 2015

The recent conference in Colonie promoting assisted suicide points to the progress of the so-called "death with dignity" movement, which would reverse the ancient Hippocratic Oath to "do no harm" in favor of allowing physicians to become active agents in the deaths of patients.

The proponents of such a change in the law are no doubt motivated by a noble desire to prevent suffering. However, in so doing, they are seeking to sanitize the dying process in a dangerous way. What's more, they have latched on to the offensive argument that there is something inherently undignified about a natural death.

As a priest of 42 years, I can tell you that nothing can be further from the truth. In my priestly ministry, I have been at the deathbeds of more people than I can count. Usually, these individuals are elderly, but I have had the sad duty of consoling those burying children or young adults as well. No one wants to see a loved one die, but, without exception, the families to whom I have ministered have seen it not only as their duty but as their privilege to care for and see their loved ones through to the point where God called them home. Most of the deaths I have witnessed, including my own father's earlier this year, have been holy and peaceful.

Science has given us drugs that can be used to poison to death those who are suffering from the fear and depression that often accompanies terminal illness. But it has also given us something much more useful — palliative care, which enables medical personnel to control pain in remarkable ways, while at the same time preparing patients emotionally and spiritually for what is to come.

I appeal to our state legislators to reject legislation that promotes suicide for those considered as unuseful or a burden to society.

J Am Med Dir Assoc. 2015 Jun 26.[Epub ahead of print]

Physician Treatment Orders in Dutch Nursing Homes.

Bouwstra H1, Smalbrugge M2, Hertogh CM2.

Author information

Abstract

OBJECTIVES:

Physician treatment orders (PTOs) prevent burdensome unnecessary medical treatment of frail nursing home patients. The aim was to determine the prevalence of PTOs and time duration between nursing home admittance and PTO completion.

DESIGN:

Population-based, retrospective cohort study.

SETTING:

Nursing homes across the Netherlands.

DATA COLLECTION:

Digital medical records of patients who subsequently were submitted to 14 Dutch nursing homes across The Netherlands were studied between 2010 and 2013. The prevalence's of do-resuscitate, do-not-resuscitate, life-sustaining, and palliative care PTOs and the time intervals between nursing home admittance and documentation of PTOs were measured. Information regarding demographic patient characteristics, type of nursing home ward, and mention of a discussion of PTOs with the patient or caregivers was obtained.

RESULTS:

Eighty-two percent of the nursing home patients received a PTO regarding resuscitation, life-sustaining, or palliative care treatment. Twenty-four percent of the patients received a do-resuscitation PTO, 55% received a do-not-resuscitate PTO, 44% a life-sustaining PTO, and 16% a palliative care PTO. The median duration between nursing home admittance and documentation of the first PTO was 1 day. Most nursing home patients had PTOs within 1 week after admittance.

CONCLUSION:

A minority (18%) of Dutch nursing home patients has no documented PTOs during their nursing home stay, which could have negative effects on end-of-life care of nursing home residents.

Copyright © 2015 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

KEYWORDS:

Physician treatment order; advance care planning; long-term care facility; nursing home; palliative care; resuscitation

Psychooncology. 2015 Jun 29. doi: 10.1002/pon.3887. [Epub ahead of print]

A tsunami of unmet needs: pancreatic and ampullary cancer patients' supportive care needs and use of community and allied health services.

Beesley VL1, Janda M2, Goldstein D3,4, Gooden H5, Merrett ND6,7, O'Connell DL8, Rowlands IJ9, Wyld D10,11, Neale RE12.

Abstract

OBJECTIVE:

People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people's needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection.

METHODS:

Queensland pancreatic or ampullary cancer patients (n = 136, 54% of those eligible) completed a survey, which assessed 34 needs across five domains (Supportive Care Needs Survey-Short Form) and use of health services. Differences by resection were compared with Chi-squared tests.

RESULTS:

Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs, whereas health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included 'not being able to do things they used to do' (41%), 'concerns about the worries of those close' (37%) and 'uncertainty about the future' (30%). Patients with non-resectable disease reported greater individual information needs, but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease.

CONCLUSION:

Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required. Copyright © 2015 John Wiley & Sons, Ltd.

Copyright © 2015 John Wiley & Sons, Ltd.

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Int J Palliat Nurs. 2014 Nov;20(11):542-8. doi: 10.12968/ijpn.2014.20.11.542.

Perspectives of an international education initiative in children's palliative care.

Price J1, Janicki JS, McKee H, Nurse S, Gray E.

Abstract

Education is viewed as central to improving future palliative care for children and families across all countries. International education initiatives will ensure practitioners are aware of global health issues and can provide culturally sensitive care. Creative and innovative means of meeting such directives are required to achieve meaningful student learning. 

This paper focuses on one innovation, a children's palliative care workshop using case studies as a teaching method, with nursing students from the USA and nursing and midwifery students from the UK. Key learning points arising from student evaluation were recorded under three main themes, these were: differences across countries, similarities across countries, and making learning fun and memorable. 

Findings indicated that this joint learning activity was viewed positively by all students and has enabled them to learn with and from each other, potentially impacting on their future practice.

Int J Palliat Nurs. 2015 Jun 2;21(6):287-91. doi: 10.12968/ijpn.2015.21.6.287.

We are not alone: international learning for professionals caring for children requiring palliative care.

Price J1, Quinn K2, McNeilly P3, Heywood M4.

Abstract

BACKGROUND:

Educational opportunities for professionals working with children requiring palliative care are central to future development within the specialty across countries. International educational initiatives involving a range of professionals are important for learning with and from others working within the field.

AIM:

To explore the experiences and value to students from participating in an international online discussion forum.

METHOD:

This article examines one such initiative; the use of an international asynchronous discussion forum with students in Melbourne, Australia and Belfast, UK who work with children and families. The innovation is examined and student perspectives of the forum's value are presented.

RESULTS:

Students endorsed the value of the forum, identifying three main areas of learning: differences across locations within countries, respecting different views and being open, and need for continued learning within children's palliative care. The overarching theme 'we are not alone' supported the idea that participation in the international discussion forum enabled students to see a broader perspective. Ideas for future developments of similar forums are also explored.

KEYWORDS:

Asynchronous discussion forum; Children's palliative care; Continuing education; International; Interprofessional