Cancer-related pain experienced in daily life is difficult to communicate and to manage - for patients and for professionals.

OBJECTIVES: The aim of this study was to gain qualitative insight into cancer patients' experiences, explanations, and management strategies regarding their cancer-related pain (CP). METHODS: Seventeen patients with CP were interviewed using a semi-structured interview approach. Braun and Clarke's thematic analysis method was used to analyze the transcribed interviews. The patients all participated in cancer rehabilitation courses arranged by the research clinic at The Danish Knowledge Centre for Rehabilitation and Palliative Care. RESULTS: Three themes were identified: (1) Explaining CP: Patients found it difficult to explain how they experienced their pain. They lacked words, and they frequently used invasive metaphors such as "Pain feels like a heart attack" (2). Strategies and barriers to the management of CP: Initiatives provided by healthcare professionals (HCPs) were perceived as insufficient, and the patients missed guidance in both pharmacological and non-pharmacological approaches to pain management. Several saw medicine as unnatural for their body, and they focused on side effects and the medicine affecting their quality of life. (3) Responsibility for managing CP: A lack of responsiveness from the HCPs and taking on responsibility for pain management were experienced by several of the patients. The patients expressed uncertainty about whom to contact for help with the management of their CP. CONCLUSION: The patients' difficulties in explaining, understanding, and communicating their pain and pain management contributed to insufficient pain management. They were also uncertain about who had the responsibility to help them to achieve pain relief. These results share the evidence drawn from studies on patients with chronic non-cancer pain. This qualitative study highlights the need for having more focus on a common language and shared understanding between patients and HCPs. It also underpins the importance of HCPs to assume their responsibility to help patients manage their pain conditions.

Associations between health-related quality of life and subsequent need for specialized palliative care and hospital utilization in patients with gastrointestinal cancer-a prospective single-center cohort study.

BACKGROUND: We lack knowledge of which factors are associated with the risk of developing complex palliative care needs. The aim of this study was to investigate the associations between patient-reported health-related quality of life and subsequent referral to specialized palliative care (SPC) and hospital utilization. METHODS: This was a prospective single-center cohort study. Data on patient-reported outcomes were collected through the European Organization of Research and Treatment of Cancer Questionnaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the time of diagnosis. Covariates and hospital utilization outcomes were collected from medical records. Adjusted logistic and Poisson regression were applied in the analyses. Participants were newly diagnosed with incurable gastrointestinal cancer and affiliated with a palliative care case management intervention established in a gastroenterology department. RESULTS: Out of 397 patients with incurable gastrointestinal cancer, 170 were included in the study. Patients newly diagnosed with incurable gastrointestinal cancer experienced a substantial burden of symptoms. Pain was significantly associated with subsequent referral to SPC (OR 1.015; 95% CI 1.001-1.029). Patients with lower education levels (OR 0.210; 95% CI 0.056-0.778) and a Charlson Comorbidity Index score of 2 or more (OR 0.173; 95% CI 0.041-0.733) were less likely to be referred to SPC. Pain (IRR 1.011; 95% CI 1.005-1.018), constipation (IRR 1.009; 95% CI 1.004-1.015), and impaired overall quality of life (IRR 0.991; 95% CI 0.983-0.999) were significantly associated with increased risk of hospital admissions. CONCLUSION: The study indicates a need for interventions in hospital departments to identify and manage the substantial symptom burden experienced by patients, provide palliative care, and ensure timely referral to SPC.

Community-based palliative care in two primary care settings - nursing homes and home care: a national survey.

AIMS: Based on selected themes from a national survey, the study aims to describe and analyse similarities and differences in community-based palliative care provided to people living at home in two different care settings - the nursing home setting and the home care setting. METHODS: Responses from four palliative care themes covered by a national survey sent to 717 managers in municipality-based care units were used. The themes were: (a) target groups in palliative care; (b) wishes for end-of-life care; (c) tools/guidelines in palliative care; and (d) palliative care provided to relatives. RESULTS: The response rates were 53% in the nursing home setting and 69% in the home care setting (69%). Both settings had target groups for palliative care, in which significantly more units in the home care settings cared for people with other cultural backgrounds or children. Wishes for end-of-life care were addressed by more than 90% of the units in both settings. There were significantly more nursing home units that addressed questions regarding resuscitation, decision making when you are incapable of making decisions for yourself, and the level of medication. In both settings, around half of the units did not use or did not know if they used tools/guidelines to identify palliative care needs. Half of home care and 65% of nursing home settings did not/were unaware of providing palliative care to relatives. CONCLUSIONS: Both settings serve target populations for palliative care with few differences. Identifying palliative care needs seemed to be a low priority in both settings. A difference was found between the settings regarding end-of-life care questions and palliative care promotion to relatives.

The use and timing of rehabilitation and palliative care to cancer patients, and the influence of social vulnerability - a population-based study.

OBJECTIVES: To identify and investigate different cohorts of cancer patients' use of physical rehabilitation and specialised palliative care (SPC) services, focusing on patients with incurable cancer and the impact of social vulnerability. METHODS: The sample originated from patients diagnosed during 2013-2018 and alive 1 January 2015. Use of physical rehabilitation and/or SPC units were identified from contacts registered in population-based administrative databases. Competing-risks regression models were applied to investigate disparities with regard to social vulnerability, disease duration, gender and age. RESULTS: A total of 101 268 patients with cancer were included and 60 125 survived longer than 3 years after their diagnosis. Among the 41 143 patients, who died from cancer, 66%, survived less than 1 year, 23% survived from 1 to 2 years and 11% survived from 2 to 3 years. Contacts regarding physical rehabilitation services appeared in the entire cancer trajectory, whereas contacts regarding SPC showed a steep increase as time drew closer to death. The largest disparity was related to disease duration. Socially vulnerable patients had less contact with SPC, while a larger proportion of the socially vulnerable cancer survivors used rehabilitation, compared with the non-vulnerable patients. CONCLUSIONS: This study provides a previously unseen detailed overview of the use of physical rehabilitation and/or SPC among patients with incurable cancer. The services appeared to overlap at a group level in the cancer trajectory, emphasising the importance of awareness with regard to coordination and combination of the services. Disparities between socially vulnerable or non-vulnerable patients were identified.

Qualitative evaluation of a palliative care case management intervention for patients with incurable gastrointestinal cancer (PalMaGiC) in a hospital department.

PURPOSE: Generalist palliative care in hospital departments largely lacks an overall structure to fully manage the symptom burden and support needs of patients with incurable gastrointestinal cancer. Palliative care case management interventions show promising results in reducing healthcare use and enhancing quality of life. Less is known about these interventions and their potential to improve the quality of generalist palliative care in hospital departments. The aim of this study was to explore patients' experience of a palliative care case management intervention (PalMaGiC) to acquire knowledge about its advantages and disadvantages and, if needed, adjust the intervention. METHODS: Qualitative semi-structured interviews with patients (n = 14) with incurable gastrointestinal cancers of the oesophagus, pancreas, colon, or rectum were conducted and analysed using content analysis. Participants in the study were affiliated with PalMaGiC, an intervention in a gastroenterology department based on symptom assessment, care planning, care coordination, and needs-based follow-up. RESULTS: Participants perceived the intervention as filling a gap and as a secure lifeline in the healthcare system since it provided 24-h access, a designated specialist nurse, and a patient-healthcare alliance. Using a needs-based approach, PalMaGiC changed the participants' focus from disease to quality of life. Participants requested more open dialog within complementary and alternative medicine, greater focus on promoting hope and using need assessment questionnaires differently in assessing symptoms and problems. CONCLUSION: The PalMaGiC intervention can potentially meet the needs of patients requiring palliative care in hospital departments, but further development of the content and personalised approach is needed.

Social vulnerability among cancer patients and changes in vulnerability during their trajectories - A longitudinal population-based study.

BACKGROUND: Identification of socially vulnerable cancer patients in the health care system is difficult. Only little is known concerning changes in the patients' social circumstances during the trajectory. Such knowledge is valuable regarding the identification of socially vulnerable patients in the health care system. The objective of this study was to use administrative data to identify population-based characteristics of socially vulnerable cancer patients and investigate how social vulnerability changed during the cancer trajectory. METHODOLOGY: A registry-based social vulnerability index (rSVI) was applied to each cancer patient prior to their diagnosis, and used to assess changes in social vulnerability after the diagnosis. RESULTS: A total of 32,497 cancer patients were included. Short-term survivors (n = 13,994) died from cancer from one to three years after the diagnosis, and long-term survivors (n = 18,555) survived at least three years after the diagnosis. 2452 (18 %) short-term survivors and 2563 (14 %) long-term survivors were categorized as socially vulnerable at diagnosis, of these 22 % and 33 % changed category to not socially vulnerable during the first two years after the diagnosis, respectively. For patients changing status of social vulnerability, several social and health-related indicators changed, which is in line with the complexity of the multifactorial social vulnerability. Less than 6 % of the patients categorized as not vulnerable at diagnosis, changed to become vulnerable during the following two years. CONCLUSION: During the cancer trajectory, social vulnerability may change in both directions. Surprisingly, more patients, who were categorized as socially vulnerable when their cancer was diagnosed, changed status to not socially vulnerable during follow-up. Future research should attempt to increase knowledge on identifying cancer patients, who experience deterioration after the diagnosis.

Identification of socially vulnerable cancer patients - development of a register-based index (rSVI).

BACKGROUND: Social vulnerability is a complex construct which is beyond relying on single measures. If socially vulnerable patients should be identified, we need a composite measure capturing the patient's overall circumstances. This study presents the development of a social vulnerability index (rSVI) for cancer patients based on administrative data from population-based registers. METHODS: All patients, who died from cancer within 5 years after the cancer diagnosis during 2013-2018 (n = 44,187), were identified and divided in four subcohorts according to survival; index cohort surviving 3-5 years (n = 3044 surviving 3-5 years), cohort 1 (n = 27,170 surviving < 1 year), cohort 2 (n = 9450 surviving 1-2 years), and cohort 3 (n = 4523 surviving 2-3 years). Variables from ten registries on health and social issues were linked to each individual patient. Variables of interest were weighted to construct the rSVI using the index-cohort. rSVI was subsequently tested on the three other cohorts for validation. RESULTS: The rSVI included weighted values for marital status, ethnicity, education, income, unemployment, psychiatric comorbidity, and somatic comorbidity. The validity of the rSVI was supported by the expected trend in proportions of vulnerable patients when applied on the other cohorts. Single social measures appeared insufficient in identification of vulnerable patients when compared with the rSVI. CONCLUSION: The rSVI provides a tool for identification of socially vulnerable cancer patients using administrative data. The index requires further validation in other patient groups and is tested against other measures of vulnerability. Future perspectives are to use the rSVI as predictor of advanced cancer patients' use of healthcare services.

[Intrathecal or epidural analgesiafor patients with cancer].

Pain is one of the most distressing symptoms for patients with advanced cancer. Most patients are treated successfully with conventional pain management. However, some patients will suffer from refractory pain, and for those neuraxial analgesia should be considered as an option. This review summarises the recent evidence for the procedure, with regard to indications, which drugs to use, and how to manage the risks and side effects. Benefits and disadvantages of intrathecal or epidural analgesia are discussed.

Is Europe also facing an opioid crisis?-A survey of European Pain Federation chapters.

BACKGROUND: There is considerable public interest in whether Europe is facing an opioid crisis comparable to the one in the United States and the contribution of opioid prescriptions for pain to a potential opioid crisis. METHODS: A task force of the European Pain Federation (EFIC) conducted a survey with its national chapter representatives on trends of opioid prescriptions and of drug-related emergency departments and substance use disorder treatment admissions and of deaths as proxies of opioid-related harms over the last 20 years. RESULTS: Data from 25 European countries were received. In most European countries opioid prescriptions increased from 2004 to 2016. The levels of opioid consumption and their increase differed between countries. Some Eastern European countries still have a low opioid consumption. Opioids are mainly prescribed for acute pain and chronic noncancer pain in some Western and Northern European countries. There was a parallel increase in opioid prescriptions and some proxies of opioid-related harms in France, Finland and the Netherlands, but not in Germany, Spain and Norway. In United Kingdom, opioid overdose deaths, but not opioid prescriptions increased between 2016 and 2018. There are no robust data available on whether prescribed opioids for pain patients contributed to opioid-related harms. CONCLUSIONS: There are marked differences between European countries in trends of opioid prescribing and of proxies for opioid-related harms. Europe as a whole is not facing an opioid crisis. Discussions on the potential harms of opioids should not obstruct their prescription for cancer pain and palliative care. SIGNIFICANCE: Europe as a whole is not facing an opioid crisis. Some Eastern European countries have limited access to opioid medicines. Discussions on the potential harms of opioid medicines for noncancer pain should not obstruct opioid therapy for cancer therapy and palliative care.

Health-related quality of life in patients with multiple myeloma participating in a multidisciplinary rehabilitation program.

Patients with multiple myeloma (MM) report high symptom burden and functional disabilities resulting in impaired health-related quality of life (HRQoL). Effective evidence-based rehabilitation guidelines are needed for patients with MM to improve HRQoL. The primary aim of this study was to investigate HRQoL in patients with rehabilitation needs living their everyday life. Patients with MM in remission attended a 12-week multidisciplinary rehabilitation program including a 5-day residential course, home-based exercise and a 2-day follow-up course. The patients were referred by the treating haematologist and completed a booklet of validated HRQoL questionnaires at baseline and before arriving for the 2-day follow-up course. The proportion of participants with moderate to severe symptoms and functional problems were assessed at the two time points and multivariate logistic regression was used to investigate explaining factors of impaired HRQoL at baseline. Ninety-two patients participated with a follow-up compliance rate of 90%. Median age was 67 years and median time since diagnosis was 26 months (ranged 5 months to 15.6 years). The most frequently reported symptoms were global quality of life, role functioning, fatigue, pain, peripheral neuropathy and physical functioning. Pain and fatigue were both highly coherent with impairment in physical functioning and those two symptoms explained most HRQoL impairments. Overall, the participants reported no change in HRQoL after the 12-week rehabilitation program. The study supports the need for an evidence-based guideline for rehabilitation and palliative care to patients with MM in remission living their everyday life.

Rehabilitation and palliative care for socioeconomically disadvantaged patients with advanced cancer: a scoping review.

BACKGROUND: Rehabilitation and palliative care may play an important role in addressing the problems and needs perceived by socioeconomically disadvantaged patients with advanced cancer. However, no study has synthesized existing research on rehabilitation and palliative care for socioeconomically disadvantaged patients with advanced cancer. The study aimed to map existing research of rehabilitation and palliative care for patients with advanced cancer who are socioeconomically disadvantaged. MATERIAL AND METHODS: A scoping review was conducted in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). A systematic literature search was performed in CINAHL, PubMed and EMBASE. Two reviewers independently assessed abstracts and full-text articles for eligibility and performed data extraction. Both qualitative and quantitative studies published between 2010 and 2019 were included if they addressed rehabilitation or palliative care for socioeconomically disadvantaged (adults ≥18 years) patients with advanced cancer. Socioeconomic disadvantage is defined by socioeconomic position (income, educational level and occupational status). RESULTS: In total, 11 studies were included in this scoping review (138,152 patients and 45 healthcare providers) of which 10 were quantitative studies and 1 was a qualitative study. All included studies investigated the use of and preferences for palliative care, and none focused on rehabilitation. Two studies explored health professionals' perspectives on the delivery of palliative care. CONCLUSION: Existing research within this research field is sparse. Future research should focus more on how best to reach and support socioeconomically disadvantaged people with advanced cancer in community-based rehabilitation and palliative care.

Everyday living with pain - reported by patients with multiple myeloma.

OBJECTIVES: The prevalence and impact of pain among patients with multiple myeloma (MM) in their everyday life require renewed attention. MM patients' survival has increased considerably over the last decades and active disease episodes are interrupted by longer periods with disease inactivity. The aim with this study is to explore pain intensity and pain interference with daily activities during periods of stable or inactive MM disease. METHODS: In a cross-sectional study from September 2017 to May 2019, self-reliant MM patients in stable disease filled a comprehensive selection of validated questionnaires regarding pain, other symptoms and quality of life, which they experienced in their daily living. Patient reported pain intensity and interference with daily activities were analyzed for associations with several clinical and demographic factors and discussed from a total pain perspective. The two outcomes, pain intensity and pain interfering with daily activities, were analyzed in two age groups (<65 years or ≥65 years). RESULTS: Among 92 participants, 80% experienced pain to interfere with their daily activities (equal in both age groups), and 63% reported moderate to severe pain intensity; (75% ≥65 years, and 49% <65 years). Pain intensity was significantly associated with signs of depression (OR 4.0 [95% CI: 1.2-13.9]) and age ≥65 years (OR 3.3 [95% CI: 1.2-9.2]). Pain interfering with daily activities was nearly significantly associated with bone involvement (OR 3.4 [95% CI: 1.0-11.6]) and signs of depression (OR 5.9 [95% CI: 1.0-36.3]). The patients were bothered with many problems in addition to pain; fatigue (91%), bone involvement (74%), signs of depression (41%), signs of anxiety (32%), comorbidity (29%) and uncertainty in relation to employment or pension (25%). Neuropathic pain was more prevalent in the feet (33% [95% CI: 23%, 43%]) compared with pain in the hands (13% [95% CI: 7%, 22%]). CONCLUSIONS: In periods of stable disease, many MM patients continue to live with intense pain interfering with their daily activities. Additional or associated problems are the presence of bone involvement, neuropathic pain, older age, uncertainty in relation to employment or pension, comorbidity, signs of depression, anxiety and fatigue. This highlights the importance of health professionals being receptive to the patients' experience of pain throughout their trajectories, to assess pain systematically and to interpret this experience from a total pain perspective. While pain problems in relation to diagnosing and treating MM is well known, this study brings the message that even during periods of stable or inactive MM disease, the patients experience pain with a moderate to severe intensity, that interferes with their everyday living. The improved survival and the consequential long trajectories make coherence in the pain treatment even more important for the patients, who may see different professionals in different health care settings for different reasons. The patient group requires a coordinated, holistic patient-centered pain treatment throughout the disease trajectory.

A population-based study of patients in Danish hospitals who are in their last year of life.

INTRODUCTION: Little is known about the prevalence and distribution in Denmark of hospital inpatients who are in their last year of life. Knowledge about these patients could attract attention towards needs for their identification and for optimisation of end-of-life care initiatives. The aims of this study were to determine the proportion of prevalent in-patients who died during the following 12 months, to present characteristics among deceased and survivors, and to identify in which hospitals, departments or specialities imminently dying patients appear most frequently. METHODS: This was a record-linkage cohort study of all patients, who were in public somatic hospitals in Denmark on 10 April 2013. Patients were followed for one year. RESULTS: A total of 13,412 inpatients were resident in 26 Danish hospitals on 10 April 2013 (range: 106-1,173 patients per hospital). 22% died during the one-year follow-up (range: 17-37% per hospital. 24% men, 20% women); 27% in medical, 15% in surgical and 50% in oncological/haematological departments. The median time to death was 59 days (54/66 days for women/men). 61% died in hospital. Deceased patients were older than survivors (76 versus 64 years, median) and had longer hospital index-stays (13 versus six days, median). 25% of the deceased (n = 740) died during the index episode, corresponding to 5.5% of all the prevalent inpatients. CONCLUSIONS: More than one in five inpatients in Danish hospitals are imminently dying or in their last year of life. Knowledge of the patients' uneven distribution in the hospital system can underpin organisational strategies to focus on end-of-life care provision. FUNDING: none. TRIAL REGISTRATION: not relevant.

Opioid prescribing habits differ between Denmark, Sweden and Norway - and they change over time.

Background and aims The medical use of opioids in different countries is often subject to public concern and debate, frequently based on rough figures from prescription databases made for registration of consumption. However, public access to some of these databases allow for further exploration of the prescription data, which can be processed to increase knowledge and insight into national opioid prescribing-behavior. Denmark, Sweden and Norway are considered closely related with regard to health care and culture. So, this study aims to provide a more detailed picture of opioid prescribing and its changes in the three Scandinavian countries during 2006-2014, using public assessable prescription data. Methods Data on dispensed opioid prescriptions (ATC; N02A, and R05DA04) were downloaded from each country's prescription-databases. The amounts of dispensed opioids were used as proxy for consumption or use of opioids. Potential differences between dispensed prescriptions and actual use cannot be drawn from these databases. Consumption-data were converted from defined daily doses (DDDs) to mg oral morphine equivalents (omeqs). Changes in the choice of opioid-types, consumption and number of users were presented using descriptive statistics and compared. Results Opioid users: during the whole period, Norway had the highest, and Denmark the lowest, number of opioid users/1,000 inhabitants. From 2006 to 2014 the numbers of users/1,000 inhabitants changed from 98 to 105 in Norway, from 66 to 75 in Denmark, and from 79 to 78 in Sweden. Opioid consumption/1,000 inhabitants: The results depended much on the unit of measurement. The differences between the countries in consumption/1,000 inhabitants were small when DDDs was used as unit, while using mg omeqs significant differences between the countries appeared. Denmark had a much higher consumption of omeqs per 1,000 inhabitants compared to Sweden and Norway. Opioid consumption/user: during the whole period, Norway had the lowest, and Denmark the highest consumption/user. In 2006, the annual average consumption/user was 1979, 3615, 6025 mg omeq/user in Norway, Sweden and Denmark, respectively. In 2014 the corresponding consumption was 2426, 3473, 6361 mg omeq/user. The preferred choices of opioid-types changed during the period in all three countries. The balance between use of weak or strong opioids showed more prominent changes in Norway and Sweden compared to Denmark. Conclusions This study has shown how public assessable opioid prescription data can provide insight in the doctors' prescribing behavior, and how it might change over time. The amounts of dispensed opioids, opioid prescribing habits and changes were compared between the countries, and significant differences appeared. Within each country, the overall picture of opioid consumption appeared rather stable. Implications Studies like this can contribute to qualify the ongoing debates of use of opioids in different nations and to monitor effects of initiatives taken by health-care authorities and health-care policy-makers.

Likelihood of death among hospital inpatients in New Zealand: prevalent cohort study.

OBJECTIVES: (1) To establish the likelihood of dying within 12 months for a cohort of hospital inpatients in New Zealand (NZ) on a fixed census date; (2) to identify associations between likelihood of death and key sociodemographic, diagnostic and service-related factors and (3) to compare results with, and extend findings of, a Scottish study undertaken for the same time period and census date. National databases of hospitalisations and death registrations were used, linked by unique health identifier. PARTICIPANTS: 6074 patients stayed overnight in NZ hospitals on the census date (10 April 2013), 40.8% of whom were aged ≥65 years; 54.4% were women; 69.1% of patients were NZ European; 15.3% were Maori; 7.6% were Pacific; 6.1% were Asian and 1.9% were 'other'. SETTING: All NZ hospitals. RESULTS: 14.5% patients (n=878) had died within 12 months: 1.6% by 7 days; 4.5% by 30 days; 8.0% by 3 months and 10.9% by 6 months. In logistic regression models, the strongest predictors of death within 12 months were: age ≥80 years (OR=5.52(95% CI 4.31 to 7.07)); a history of cancer (OR=4.20(3.53 to 4.98)); being Maori (OR=1.62(1.25 to 2.10)) and being admitted to a medical specialty, compared with a surgical specialty (OR=3.16(2.66 to 3.76)). CONCLUSION: While hospitals are an important site of end of life care in NZ, their role is less significant than in Scotland, where 30% of an inpatient cohort recruited using similar methods and undertaken on the same census date had died within 12 months. One reason for this finding may be the extended role of residential long-term care facilities in end of life care provision in NZ.

[Specialized palliative care in Denmark lacks capacity and accessibility].

Specialized palliative care (SPC) has a core task in providing palliative care to patients and the families of patients suffering from life-threatening diseases. SPC-units also support the generalist palliative care level. In spring 2016, Denmark had a capacity of 55 units comprising hospices, palliative care teams and palliative hospital wards, which is an insufficient number according to the European Association for Palliative Care recommendations. Despite many non-cancer deaths, 96% of the patients receiving SPC have cancer. The accessibility to SPC is unequally distributed across the regions.

[Treatment of constipation in palliative care patients is a challenge].

The evidence for treatment of constipation in palliative care patients is poor. The condition of these patients is often complex, and results from studies performed in other patient groups cannot be extrapolated unconditionally. However, macrogol (polyethylene glycol), lactulose and sodium picosulphate seem to be well tolerated, and methylnaltrexone could be used in opioid-induced constipation, if the patients are not at risk from gastrointestinal perforation. The patients should be offered quiet and private surroundings, and attention should be payed to securing an optimal body position for defecation.