Christina Ramsenthaler

What issues matter most to people with multiple myeloma and how well are we measuring them?: A systematic review of quality of life tools

Treatment advances in multiple myeloma have increased expected survival from months to years for some patients. Alongside improved survival emerges a need to better understand and measure health‐related quality of life (HRQOL), both in research and clinical settings.

Understanding what matters most to people with multiple myeloma: a qualitative study of views on quality of life

BackgroundMultiple myeloma is an incurable haematological cancer that affects physical, psychological and social domains of quality of life (QOL). Treatment decisions are increasingly guided by QOL issues, creating a need to monitor QOL within clinical practice. The development of myeloma-specific QOL questionnaires has been limited by a paucity of research to fully characterise QOL in this group. Aims of the present study are to (1) explore the issues important to QOL from the perspective of people with multiple myeloma, and (2) explore the views of patients and clinical staff on existing QOL questionnaires and their use in clinical practice.MethodsThe ‘Issues Interviews’ were semi-structured qualitative interviews to explore the issues important to QOL in a purposive sample of myeloma patients (n = 20). The ‘Questionnaire Interviews’ were semi-structured qualitative interviews in a separate purposive sample of myeloma patients (n = 20) to explore views on existing QOL questionnaires and their clinical use. Two patient focus groups (n = 7, n = 4) and a focus group of clinical staff (n = 6) complemented the semi-structured interviews. Thematic content analysis resulted in the development of a theoretical model of QOL in myeloma.ResultsMain themes important to QOL were Biological Status, Treatment Factors, Symptoms Status, Activity & Participation, Emotional Status, Support Factors, Expectations, Adaptation & Coping and Spirituality. Symptoms had an indirect effect on QOL, only affecting overall QOL if they impacted upon Activity & Participation, Emotional Status or Support Factors. This indirect relationship has implications for the design of QOL questionnaires, which often focus on symptom status. Health-service factors emerged as important but are often absent from QOL questionnaires. Sexual function was important to patients and difficult for clinicians to discuss, so inclusion in clinical QOL tools may flag hidden problems and facilitate better care. Patients and staff expressed preferences for questionnaires to be no more than 2 pages long and to include a mixture of structured and open questions to focus the goals of care on what is most important to patients.ConclusionExisting QOL questionnaires developed and validated for use in myeloma do not capture all that is important to patients and may not be well suited to clinical use.

Discovering the hidden benefits of cognitive interviewing in two languages: The first phase of a validation study of the Integrated Palliative care Outcome Scale:

Background: The Integrated Palliative care Outcome Scale is a newly developed advancement of the Palliative care Outcome Scale. It assesses patient-reported symptoms and other concerns. Cognitive interviewing is recommended for questionnaire refinement but not adopted widely in palliative care research. Aim: To explore German- and English-speaking patients’ views on the Integrated Palliative care Outcome Scale with a focus on comprehensibility and acceptability, and subsequently refine the questionnaire. Methods: Bi-national (United Kingdom/Germany) cognitive interview study using ‘think aloud’ and verbal probing techniques. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis and pre-defined categories. Results from both countries were collated and discussed. The Integrated Palliative care Outcome Scale was then refined by consensus. Setting/participants: Purposely sampled patients from four palliative care teams in palliative care units, general hospital wards and in the community. Results: A total of 15 German and 10 UK interviews were conducted. Overall, comprehension and acceptability of the Integrated Palliative care Outcome Scale were good. Identified difficulties comprised the following: (1) comprehension problems with specific terms (e.g. ‘mouth problems’) and length of answer options; (2) judgement difficulties, for example, due to the 3-day recall for questions; and (3) layout problems. Combining the results from both countries (e.g. regarding ‘felt good about yourself’) and discussing them from both languages’ perspectives resulted in wider consideration of the items’ meaning, enabling more detailed refinement. Conclusion: Cognitive interviewing proved valuable to increase face and content validity of the questionnaire. The concurrent approach in two languages – to our knowledge the first such approach in palliative care – benefited the refinement. Psychometric validation of the refined Integrated Palliative care Outcome Scale is now underway.

Prevalence of symptoms in patients with multiple myeloma: a systematic review and meta‐analysis

Multiple myeloma (MM) is an incurable haematological disease. Due to novel agents, overall survival has improved in this group, yet there are no systematic reviews to understand the symptom profiles resulting from disease and treatment‐related toxicities. We aimed to synthesise data on the prevalence of symptoms in patients with MM.

Learning from the public: Citizens describe the need to improve access, provision and recognition of end-of-life care in a population-based study from seven countries in Europe

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.

Was ist „Qualitative Inhaltsanalyse?“

Die Grundlagen der Qualitativen Inhaltsanalyse begannen in den Vereinigten Staaten von Amerika mit der Entwicklung eines quantitativen Verfahrens zur systematischen Analyse groβer Textmengen. In den 1920er und 30er Jahren entwickelten und nutzten die Politologen Harold Lasswell und Paul Lazarsfeld die quantitative Inhaltsanalyse zur Analyse von Kriegspropaganda in Massenmedien (Schramm et al. 1997).

The Myeloma Patient Outcome Scale is the first quality of life tool developed for clinical use and validated in patients with follicular lymphoma

The development of novel agents and an ageing population has led to an increasing number of patients with follicular lymphoma (FL) living longer with their disease. Health‐related quality of life (HRQOL) is a priority for patients and should guide clinical decisions. The Myeloma Patient Outcome Scale (MyPOS), originally developed for myeloma, was validated in a cross‐sectional survey recruiting 124 FL patients.

Does Erythropoietin Improve Cognitive Symptoms in Patients with Cancer? A Systematic Review

Objectives: Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann‐Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women. Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregiver’s ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.Background: Beeing a teenager living with a dying parent is well known to be distressing with a significant impact on teenagers psychological well-beeing. To support teenagers and prevent long-term ...Background: Preparedness for caregiving has been found to be an important concept in palliative home care where family members are taking a great responsibility for the patient’s care. Low prepared ...category: Palliative care in specific groupsObjectives: Of the few studies that have paid attention to feelings of reward in palliative family caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Alth ...

PS43 What is Important to the Quality of Life of People with Multiple Myeloma? Implications for the Design Of Quality of Life Questionnaires

Background Multiple myeloma is an incurable cancer, although recent treatment advances have improved expected survival from months to years in some cases. Increasing survival has elevated the importance of understanding and measuring patients’ quality of life (QOL) in research and clinical settings. A number of QOL questionnaires exist for use in myeloma, yet there is a paucity of research to understand what issues are important to QOL from the patients’ perspective. This study explores the issues important to the QOL of people with myeloma, and how QOL is affected by the disease and its treatment. Implications for the design of QOL questionnaires are discussed. Methods In-depth qualitative interviews with 20 myeloma patients to identify issues important to QOL and explore the impact of disease and treatment. Participants recruited from King’s College Hospital and St. Christopher’s Hospice, London. Purposive sampling by age, gender, performance status and disease stage. Thematic content analysis of interview transcripts was conducted. Results Many participants started by discussing the importance of physical function and independence. There appeared to be a dominant role for participatory function in determining QOL – family life, leisure pursuits and other social activities were often identified as important. Physical symptoms such as pain or fatigue were frequently said to be affecting QOL, but often this was through their affect on social and participatory function. Sometimes symptoms were reported, but they did not affect QOL because functional and participatory aspects were maintained. Issues that prevented social engagement or participation were often therefore most deleterious to QOL – such as reduced mobility; susceptibility to infection; and fear of low-trauma fractures. Participants also often discussed the importance of quality, accessible healthcare – particularly good communication and receiving the right amount of information from professionals. Conclusion These results support the broad consensus that quality of life is multidimensional, involving physical, psychological and social domains. The presence of symptoms per se did not necessarily impair QOL in this group. QOL questionnaires for use in myeloma should perhaps focus less on the presence, absence or severity of a symptom, but consider how much of a problem the symptom is in terms of its broader impact on function. This is particularly important when tools are applied in clinical practice, when the wider burden of symptoms is perhaps of greater interest. Tools for use in myeloma clinical practice should also consider items about the quality of healthcare – since this appears important to patients’ QOL.

Core attitudes in palliative care

Most of palliative patients want to be taken care of at home by their general practitioner (GP) until the moment they die. GP’s need to continuously educate themselves in order to be able to perform this task. We want to know the learning needs of GP’s and the preferences and barriers they have towards continuing medical education (CME) in palliative care. We also want to know if organizers of CME share these insights and take them into account.Aim: After two large scale studies on medical end-of-life practices in Belgium in 1998 and 2001, we conducted a follow-up study in 2007 to investigate trends in frequency and characteristics of these practices and differences before and after the enactment of the laws on palliative care and on euthanasia in 2002. Methods: We drew a stratified at random sample of 6927 cases from all deaths that occurred between June and November 2007 in Flanders, Belgium and mailed questionnaires about medical end-of-life practices to the certifying physicians. Results: Response rate was 58.4%. In 2007, the rate of intensified pain alleviation in Flanders increased from 18.4% of all deaths in 1998 and 22.0% in 2001 to 26.7% in 2007, and that of non-treatment decisions from 14.6 % in 2001 to 17.4% in 2007. In 1.9% of all deaths physicians reported euthanasia, a rate that was higher than that in 1998 (1.1%) and 2001 (0.3%). The rate of lethal drug use without the patient’s explicit request was lower in 2007 (1.8% of all deaths) than that in 1998 (3.2%), but similar to that in 2001 (1.5%). No shift in characteristics of patients whose death was the result of using these drugs was found. In 14.5% of all deaths in 2007, physicians reported continuous and deep sedation until death, which was substantially more often than in 2001 (8.2%). In 2007, physicians discussed medical end-of-life practices more often with competent patients, relatives and colleagues than in 1998. Conclusion: The enactment of the Belgian laws on palliative care and on euthanasia was followed by an increase in all types of medical end-of-life practices, with the exception of the use of lethal drugs without patient’s explicit request. No shift toward the use of life-ending drugs in vulnerable patient groups was observed. The substantial increase in the frequency of deep sedation demands more in-depth research. Funding: Institute for the Promotion of Innovation by Science and Technology - Flanders.Aim: This study investigates attitudes towards physician-assisted death in minor patients of all physicians involved in the treatment of dying minor patients in Flanders, Belgium, and how these attitudes are related to physicians’ and patients’ characteristics and actual medical end-of-life practices. Method : Physicians signing death certificates of all 250 patients aged 1-17 years who died between June 2007 and November 2008 in Flanders, Belgium, were sent an anonymous questionnaire on their attitudes and end-of-life practices in the death concerned. Results : Response was obtained from 124 physicians for 71% of eligible cases (N=149). Sixty-nine percent of physicians favors an extension of the Belgian law on euthanasia to include minors, 27% thinks this should be done by setting clear age limits. Sixty-one percent thought parental consent is required before taking life-shortening decisions and 52% found the administration of a lethal drug to a non competent minor on parental request was acceptable. Cluster-analysis yielded a cluster acceptant of (68% of physicians) and a cluster (32% of physicians) reluctant towards physician-assisted death in minors. Controlling for physician specialty and patient characteristics, acceptant physicians were more likely to engage in various practices with a (co-)intention of shortening the patient’s life than reluctant physicians. Conclusion : A majority of Flemish physicians involved in the care of dying children seems to accept physician-assisted dying in children under certain circumstances and favors an amendment to the euthanasia law to include minor patients. The approach favored is assessing competency rather than setting an arbitrary age-limit. These stances may encourage policy-makers to develop guidelines for medical end-of-life practices in minors that address specific challenges arising in this patient group, including how children and parents should be involved in the decision-making process.Background: Up to 80% of people with cancer experience involuntary weight loss and difficulty eating. These symptoms of cancer cachexia syndrome can be experienced as distressing by both patients and their carers. The most effective way of managing weight- and eating-related distress is yet to be established. Aims: To report the first systematic review of the effect on symptom experience of psychosocial interventions offered to cancer patient-carer dyads. Methods: Searches were conducted of MEDLINE, EMBASE, PsycINFO and CINAHL databases, for studies of experimental design testing non-pharmacological interventions for patient-carer dyads experiencing cancer related problems. Limits were English language; 1998 to 9/2008; adults. 1534 abstracts were assessed against inclusion/exclusion criteria using a process involving two reviewers. Sixty publications were selected for full-text examination and 30 included in the review. Information relevant to the review question was extracted, quality assessed using the Cochrane Collaboration’s tool for assessing risk of bias, and presented as a narrative synthesis. Results: The 30 reviewed studies investigated patient and carer outcomes from interventions focused on i/ patients, ii/ carers, iii/ models of service delivery, iv/ couples. Generally, when a clearly defined non-pharmacological intervention was tested a beneficial effect was found. Few couple-focused interventions have been tested empirically. In two of the three studies that compared a couple with individual focused intervention, the couple focus was found superior (no effect was found in the third, lower quality, study). Conclusion: Couple based psychosocial interventions may have benefit for cancer patient-carer dyads. Further investigation is warranted of couple focused intervention for patient-carer dyads living with weight-and eating-related distress.number: 2 Abstract type: Plenary The European Pharmacogenetic Opioid Study (EPOS): Influence from Genetic Variability on Opioid Use in 2209 Cancer Pain Patients Klepstad P., Fladvad T., Skorpen F., Bjordal K., Caraceni A., Dale O., Davies A., Kloke M., Lundstrom S., Maltoni M., Radbruch L., Sabatowski R., Sigurdadottir V., Strasser F., Fayers P., Kaasa S., The European Palliative Care Research Collaborative (EPCRC) and The European Association for Palliative Care Research Council (EAPC-RN) Norwegian University of Science and Technology, Medical Faculty, Trondheim, Norway, Norwegian University of Science and Technology, Trondheim, Norway, Oslo University Hospital, Oslo, Norway, National Cancer Institute, Milan, Italy, The Royal Marsden NHS Foundation Trust, London, United Kingdom, Kliniken Essen-Mitte, Essen, Germany, Stockholms Sjukhem Foundation, Department of Palliative Medicine, Stockholm, Sweden, Valerio Grassi Hospice, Forli, Italy, RWTH Aachen University, Aachen, Germany, University Hospital ‘Carl Gustav Carus’ Dresden, Dresden, Germany, Landspitali University Hospital, Reykjavik, Iceland, Oncology and Palliative Care Center, St Gallen, Switzerland, Department of Public Health University of Aberdeen, Aberdeen, United Kingdom Background: Cancer pain patients vary in opioid doses. Preclinical and clinical studies suggest that opioid efficacy is related to genetic variability. However, the studies have small samples, findings are not validated or replicated, and some candidate genes are not studied. This is the first large population study to assess the associations of genetic variability with opioid doses using a confirmatory validation population. Methods: 2209 adult Caucasian cancer patients using a WHO step III opioid were included at 20 centers in 11 European countries. SNPs in genes reported to influence opioid efficacy or with a putative influence on opioid mechanisms were analyzed (SNPlex Genotyping System). Non-genetic factors that predicted opioid dose (pain, time on opioids, age, gender, Karnofsky performance status (KPS) and bone or CNS metastases) were included as covariates. The patients were randomly divided into one development sample, and one validation sample used for confirmatory tests on the SNPs initially detected. Results: Mean age was 62 years, mean KPS was 59 and mean average pain intensity was 3.5. The patients used morphine (n=830, mean 202 mg/24h), oxycodone (n=446, mean 141 mg/24h), fentanyl (n=699, mean 78 mg/h) or other opioids (n=234). In the primary analyzes none of 123 SNPs in the genes OPRM1, OPRD1, OPRK1, ARRB2, GNAZ, HINT, Stat6, ACBB1, COMT, HRH1, ADRA2A, MC1R, TACR1, GCH1, DRD2, DRD3, HTR3A, HTR3B, HTR 2A, HTR3C, HTR3D, HTR3E, HTR1 or CNR1 showed significant associations with opioid dose in both the development and the validation analyzes. Conclusion: Genetic variability in 123 SNPs in 25 candidate genes did not predict the need for opioids in 2209 cancer pain patients. The study demonstrates the importance to validate findings obtained in genetic association studies in order to avoid the report of spurious associations. More comprehensive results, interpretations and future directions for gene symptom interactions EPOS analyses will be presented. Abstract number: 3 Abstract type: Plenarynumber: 3 Abstract type: Plenary Does Increasing Advance Care Planning Reduce Terminal Hospitalizations among Nursing Home Residents? Teno J.M., Gozalo P., Mitchell S., Bynum J., Dosa D., Mor V. Brown University, Community Health, Providence, United States, Harvard Medical School, Boston, United States, Dartmouth College, Hanover, United States Objective: Terminal hospitalizations are costly and often avoidable with appropriate advance care planning (ACP). This study examined changes in ACP as measured by written DNR orders in US Nursing Homes (NH) and whether changes in facility rate of DNR orders is associated with reduction in terminal transfers of NH residents to die in a hospital. Design, setting, and participants: Nursing home panel study of whether increasing rates of DNR orders is associated with reductions in terminal hospitalizations controlling for changes in facility characteristics (staffing, use of NP/PA, case mix of nursing residents, admission volume, racial composition, payer mix). Main outcomes measures: Facility rate of terminal hospitalizations in the last 7 days of life between 1999 and 2007. Results: The average facility rate of terminal hospitalizations was 15.7% with some fluctuation between 1999 (15.4) and 2007 (14.9%). Nursing homes with initially low rates of DNR orders that increased to higher rates had lower terminal hospital admission rates in 2007 (9.9%) than facilities with continuously low DNR rates (20.7%). Even after applying a multivariate fixed effect model with an instrumental variable, the effect of DNR order rate on terminal hospitalization was .049 (95% CI -.044, -.055) indicating that for every 10% increase in DNR orders there was 0.49% decrease in terminal hospitalizations. This rate an be compared to the increase of .55% in the terminal hospitalization rate when a NH became disproportionately dependent on Medicaid funding or the .37% decrease in terminal hospitalization rate associated with adding a nurse practitioner to the clinical staff complement. Conclusion: Nursing homes that improved advance care planning practices as measured by facility rate of DNR orders revealed significantly lower rates of terminal hospitalizations. This research was funded by the US National Institute of Aging, that is part of the US National Institute of Health. Research into the cognitively impaired Abstract number: 5 Abstract type: Invited lecturenumber: 5 Abstract type: Invited lecture Acute Cognitive Failure and Delirium in Palliative Care: The Role of Opioid Analgesics and Other Potentially Reversible Causes Palliative Medicine 2010; 24: S5 S229 ! The Author(s), 2010. Reprints and permissions: sagepub.co.uk/journalsPermissions.nav 10.1177/0269216310366390 Gagnon P., Gaudreau J.-D. Centre Hospitalier Univerisitaire de Québec HDQ, Psycho-oncologie, Québec, QC, Canada, Université Laval, Faculty of Pharmacy, Québec, QC, Canada, Université Laval, Faculty of Pharmacy and Department of Psychiatry, Québec, QC, Canada Aim: Review the associations between opioids, psychoactive medications, and other potentially reversible causes of delirium in palliative care. Methods: Data were obtained from three prospective studies conducted at our center and from a critical review of the literature. Two prospective observational studies were conducted to measure delirium incidence and associated factors. Another multicenter study of delirium prevention in terminal cancer was conducted among seven palliative care units in Canada. The Nursing Delirium Screening Scale, the Confusion Rating Scale and the Confusion Assessment Method were used. Results: The literature review remains equivocal as to which medication is clearly involved in inducing delirium. In two of our studies, opioids were associated with the development of delirium, especially at a dosage over 90 mg. of morphine equivalent per day. Corticosteroids, at a threshold of 15 mg. dexamethasone equivalent per day, and Benzodiazepines, above 2 mg. of lorazepam equivalent per day, were also associated with delirium in one of our study. However, the role of benzodiazepines remains controversial as it was associated with a lower incidence of symptoms of hyperactive delirium in our multicenter study. Other drugs, such as co-analgesics and anticonvulsants, are also often suspected as being delirogenic. Other reversible causes, such as alcohol or benzodiazepine withdrawal, hypercalcemia, infections, and pulmonary embolism must also be considered. These factors are especially critical in patients with past history of delirium who are at a higher risk. Conclusion: Opioids remain the most frequent reversible cause of delirium in palliative care, especially at higher dosage. Benzodiazepines and corticosteroids are also often identified as potential reversible causes of delirium in studies, as are many other drugs and pathologies. All these factors should be carefully considered in delirium prevention, especially in patients at a higher risk. Epidemiology and Policy Abstract number: 8 Abstract type: Oralnumber: 8 Abstract type: Oral Why Are Men at Increased Risk of Depression Compared to Women in Palliative Care? Hayes R.D., Lee W., Rayner L., Price A., Hotopf M. Institute of Psychiatry / King’s College London, General Hospital Psychiatry, London, United Kingdom Aim: To identify potential explanatory factors for the excess depression found among men in palliative care to identify clinically relevant risk markers for depression in men and women. Methods: 300 participants recruited as new patients of a large hospice in South East London were interviewed. Depression was measured using a validated instrument: the Primary Care Evaluation of Mental Disorder (PRIME-MD). Further data were collected during the interview and from case records. Results: The higher prevalence of depression in men was not explained by a higher prevalence of particular types of cancer in men nor due to confounding by age, ethnicity, cancer stage, social support, religious beliefs, loss of dignity and time until death. Interactions between gender and other variables were examined. Needing any help with daily tasks was significantly associated with depression in men only. This association was not affected by marital status, level of social support, ethnicity or age. We also observed a dose response relationship between the degree to which men needed help with basic tasks and the proportion of men who were depressed (P for trend=0.01), but the reverse trend for women (P=0.04) (see table).