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  1. Article ; Online: Frequency of self-directed dying in the Netherlands: research protocol of a cross-sectional mixed-methods study.

    Bosma, Fenne / Stoppelenburg, Arianne / van der Heide, Agnes / van de Vathorst, Suzanne

    BMJ open

    2024  Volume 14, Issue 4, Page(s) e085240

    Abstract: Introduction: In the Netherlands, assisting in suicide is allowed for physicians and regulated by the Termination of Life on Request and Assisted Suicide (review procedures) Act. However, some people decide to end their lives outside the medical domain, ...

    Abstract Introduction: In the Netherlands, assisting in suicide is allowed for physicians and regulated by the Termination of Life on Request and Assisted Suicide (review procedures) Act. However, some people decide to end their lives outside the medical domain, without a physician's help. Two approaches for such self-directed dying are voluntary stopping eating and drinking (VSED) and independently taking lethal medication attended by a confidant (ILMC). The frequency of deaths by either of these methods in the Netherlands was examined in 2007. Since then, there have been societal, political and healthcare developments which may have had an influence on the frequency of self-directed dying. The primary objective of this study is to estimate how many people in the Netherlands currently die by VSED or ILMC. Secondary objectives include providing insight in the characteristics and quality of dying of people who choose for self-directed dying.
    Methods and analysis: This cross-sectional study consists of an online questionnaire study (January to February 2024) among a randomly drawn sample (n=37 500) from a representative panel of the Dutch adult population in which participants are asked about potential experiences of close relatives choosing for VSED or ILMC. A two-stage screening procedure will be used to determine whether the respondents' experiences represent a death by VSED or ILMC. Additional interviews (n=40) will be held with questionnaire respondents indicating their willingness to participate (May to September 2024). Quantitative data will be analysed using SPSS software, and qualitative data will be thematically analysed using NVivo software.
    Ethics and dissemination: The study obtained approval from the Medical Research Ethics Committee of the Erasmus Medical Center, under number MEC-2023-0689. Informed consent will be sought from study participants in line with General Data Protection Regulation legislation. Results of the study will be disseminated through publications in scientific journals and conference presentations.
    Trial registration number: NCT06186791.
    MeSH term(s) Humans ; Netherlands ; Cross-Sectional Studies ; Suicide, Assisted/psychology ; Suicide, Assisted/legislation & jurisprudence ; Surveys and Questionnaires ; Adult ; Research Design ; Female ; Male ; Middle Aged
    Language English
    Publishing date 2024-04-29
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 2599832-8
    ISSN 2044-6055 ; 2044-6055
    ISSN (online) 2044-6055
    ISSN 2044-6055
    DOI 10.1136/bmjopen-2024-085240
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Specialist palliative care teams and characteristics related to referral rate: a national cross-sectional survey among hospitals in the Netherlands.

    Boddaert, M S / Stoppelenburg, A / Hasselaar, J / van der Linden, Y M / Vissers, K C P / Raijmakers, N J H / Brom, L

    BMC palliative care

    2021  Volume 20, Issue 1, Page(s) 175

    Abstract: Background: Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs' service ... ...

    Abstract Background: Specialist palliative care teams (SPCTs) in hospitals improve quality of life and satisfaction with care for patients with advanced disease. However, referrals to SPCTs are often limited. To identify areas for improvement of SPCTs' service penetration, we explored the characteristics and level of integration of palliative care programmes and SPCTs in Dutch hospitals and we assessed the relation between these characteristics and specialist palliative care referral rates.
    Methods: We performed a secondary analysis of a national cross-sectional survey conducted among hospitals in the Netherlands from March through May 2018. For this survey, a previously developed online questionnaire, containing 6 consensus-based integration indicators, was sent to palliative care programme leaders in all 78 hospitals. For referral rate we calculated the number of annual inpatient referrals to the SPCT as a percentage of the number of total annual hospital admissions. Referral rate was dichotomized into high (≥ third quartile) and low (< third quartile). Characteristics of SPCTs with high and low referral rate were compared using univariate analyses. P-values < 0.05 were considered significant.
    Results: In total, 63 hospitals (81%) participated in the survey, of which 62 had an operational SPCT. The palliative care programmes of these hospitals consisted of inpatient consultation services (94%), interdisciplinary staffing (61%), outpatient clinics (45%), dedicated acute care beds (21%) and community-based palliative care (27%). The median referral rate was 0.56% (IQR 0.23-1.0%), ranging from 0 to 3.7%. Comparing SPCTs with high referral rate (≥1%, n = 17) and low referral rate (< 1%, n = 45) showed significant differences for SPCTs' years of existence, staffing, their level of education, participation in other departments' team meetings, provision of education and conducting research. With regard to integration, significant differences were found for the presence of outpatient clinics and timing of referrals.
    Conclusion: In the Netherlands, palliative care programmes and specialist palliative care teams in hospitals vary in their level of integration and development, with more mature teams showing higher referral rates. Appropriate staffing, dedicated outpatient clinics, education and research appear means to improve service penetration and timing of referral for patients with advanced diseases.
    MeSH term(s) Cross-Sectional Studies ; Hospitals ; Humans ; Netherlands ; Palliative Care ; Quality of Life ; Referral and Consultation
    Language English
    Publishing date 2021-11-11
    Publishing country England
    Document type Journal Article
    ISSN 1472-684X
    ISSN (online) 1472-684X
    DOI 10.1186/s12904-021-00875-3
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: When a dying patient is asked to participate in a double-blind, placebo-controlled clinical trial on symptom control: The decision-making process and experiences of relatives.

    van Esch, Harriëtte J / Stoppelenburg, Arianne / van Zuylen, Lia / van der Rijt, Carin Cd / van der Heide, Agnes

    Palliative medicine

    2022  Volume 36, Issue 10, Page(s) 1552–1558

    Abstract: Background: Placebo-controlled trials can provide evidence to inform end-of-life care, but it is contested whether asking dying patients to participate in such trials is morally justifiable. To investigate the experiences of these patients is even more ... ...

    Abstract Background: Placebo-controlled trials can provide evidence to inform end-of-life care, but it is contested whether asking dying patients to participate in such trials is morally justifiable. To investigate the experiences of these patients is even more complex. Therefore, proxy assessments by relatives can be a good alternative.
    Aim: To explore the experience of participating in a placebo-controlled trial at the end of life from the perspective of bereaved relatives.
    Design: Mixed-method study, including questionnaires and interviews.
    Setting/participants: The SILENCE study was a randomized, double-blind, placebo-controlled trial on the efficacy of scopolamine butylbromide to prevent death rattle. The study was performed in six inpatient hospice facilities. Patients were asked to participate at admission in the hospice. Three months after the death of the patient, bereaved relatives were invited to fill in a questionnaire and to participate in an interview. One hundred four questionnaires were completed and 17 relatives were interviewed.
    Results: Fourteen percent of the relatives participating in the questionnaire study considered the participation of their loved one in research a bit burdensome and 10% considered it a bit stressful. Seventeen percent thought that it was a bit burdensome for the patient. Eighty-three percent considered participation in this type of research (very) valuable. The in-depth interviews showed that patients and relatives jointly decided about participation in this double-blind placebo-controlled medication trial. Relatives generally respected and felt proud about patients' decision to participate.
    Conclusion: The large majority of bereaved relatives experienced the participation of their dying love one in this RCT as acceptable and valuable.
    Language English
    Publishing date 2022-12-12
    Publishing country England
    Document type Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163221127557
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Dry mouth in patients with a life-limiting condition or frailty: a study protocol for two intervention studies and a nested qualitative sub-study (the Dry mOuth Project, DROP).

    van der Meulen, Annelot I / Neis, Evelien P J G / de Nijs, Ellen J M / Coenegracht, Bénédicte J E G / Stoppelenburg, Arianne / van den Beuken-van Everdingen, Marieke H J / van der Linden, Yvette M

    BMC palliative care

    2023  Volume 22, Issue 1, Page(s) 120

    Abstract: Background: Despite its prevalent and impactful nature, dry mouth remains an underexposed and undertreated symptom in patients with a life-limiting condition or frailty. The main contributing factors are a lack of awareness and knowledge amongst both ... ...

    Abstract Background: Despite its prevalent and impactful nature, dry mouth remains an underexposed and undertreated symptom in patients with a life-limiting condition or frailty. The main contributing factors are a lack of awareness and knowledge amongst both healthcare professionals and patients, and a scarcity of effective, evidence-based interventions. In the DRy mOuth Project (DROP), we address these factors by investigating both a non-pharmacological and a pharmacological intervention: a nurse-led patient education program and locally applied pilocarpine.
    Methods: This intervention-based research project consists of two parallel studies. The non-pharmacological study is a cluster non-randomized controlled trial in 228 palliative nursing home and hospital patients, investigating the effect of structured use of guidelines and of patient education on dry mouth symptoms. This intervention, a nurse-led patient education program (the Mouth Education Program, MEP), will be compared to care as usual, the control. The pharmacological study is a double-blind placebo-controlled randomized trial that examines the effect of locally applied pilocarpine drops in 120 patients with dry mouth symptoms. Both studies use the same mixed-methods study design, in which the primary outcome is the clinical response to the intervention at 4 weeks, as measured by a dry mouth severity score (numeric rating scale from 0 to 10). Other outcomes, as measured by questionnaires over a 12-week follow-up period, include durability of the effect, impact on quality of life and, adherence and acceptability of the intervention. In addition, the feasibility and cost-effectiveness are evaluated by means of questionnaires and focus groups with healthcare professionals, and interviews with patients.
    Discussion: This study investigates the effectiveness and feasibility of two interventions for dry mouth symptoms in patients with life-limiting conditions or frailty. Due to the large-scale and mixed-method nature of the study, this study will also improve our understanding of dry mouth and its relating factors and of the patients' and healthcare professionals' experiences with symptoms, care and guidelines of dry mouth, including any perceived barriers and facilitators.
    Trial registration: NCT05964959 & NCT05506137.
    MeSH term(s) Humans ; Frailty ; Inpatients ; Pilocarpine ; Quality of Life ; Randomized Controlled Trials as Topic ; Xerostomia/complications ; Xerostomia/drug therapy ; Non-Randomized Controlled Trials as Topic
    Chemical Substances Pilocarpine (01MI4Q9DI3)
    Language English
    Publishing date 2023-08-23
    Publishing country England
    Document type Clinical Trial Protocol ; Journal Article
    ZDB-ID 2091556-1
    ISSN 1472-684X ; 1472-684X
    ISSN (online) 1472-684X
    ISSN 1472-684X
    DOI 10.1186/s12904-023-01242-0
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: Palliative care in Dutch hospitals: a rapid increase in the number of expert teams, a limited number of referrals.

    Brinkman-Stoppelenburg, A / Boddaert, M / Douma, J / van der Heide, A

    BMC health services research

    2016  Volume 16, Issue 1, Page(s) 518

    Abstract: Background: Palliative care expert teams in hospitals have positive effects on the quality of life and satisfaction with care of patients with advanced disease. Involvement of these teams in medical care is also associated with substantial cost savings. ...

    Abstract Background: Palliative care expert teams in hospitals have positive effects on the quality of life and satisfaction with care of patients with advanced disease. Involvement of these teams in medical care is also associated with substantial cost savings. In the Netherlands, professional standards state that each hospital should have a palliative care team by 2017. We studied the number of hospitals that have a palliative care team and the characteristics of these teams.
    Methods: In April 2015, questionnaires were mailed to key palliative care professionals in all general, teaching and academic hospitals in the Netherlands. Out of 92 hospitals, 74 responded (80 %).
    Results: Seventy-seven percent of all participating hospitals had a palliative care team. Other services, such as outpatient clinics (22 %), palliative care inpatient units (7 %), and palliative day care facilities (4 %) were relatively scarce. The mean number of disciplines that were represented in the teams was 6,5. The most common disciplines were nurses (72 %) and nurse practitioners (54 %), physicians specialized in internal medicine (90 %) or anaesthesiology (75 %), and spiritual caregivers (65 %). In most cases, the physicians did not have labeled hours available for their work as palliative care consultant, whereas nurses and nurse practitioners did. Most teams (77 %) were only available during office hours. Twenty-six percent of the teams could not only be consulted by healthcare professionals but also by patients or relatives. The annual number of consultations for inpatients per year ranged from 2 to 680 (median: 77). On average, teams were consulted for 0.6 % of all patients admitted to the hospitals.
    Conclusion: The number of Dutch hospitals with a palliative care team is rapidly increasing. There are substantial differences between teams regarding the disciplines represented in the teams, the procedures and the number of consultations. The development of quality standards and adequate staffing of the teams could improve the quality and effectiveness of the teams.
    Language English
    Publishing date 2016-09-23
    Publishing country England
    Document type Journal Article
    ISSN 1472-6963
    ISSN (online) 1472-6963
    DOI 10.1186/s12913-016-1770-2
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  6. Article: Implantable cardioverter defibrillators at the end of life: future perspectives on clinical practice.

    Stoevelaar, R / Brinkman-Stoppelenburg, A / van Bruchem-Visser, R L / van Driel, A G / Bhagwandien, R E / Theuns, D A M J / Rietjens, J A C / van der Heide, A

    Netherlands heart journal : monthly journal of the Netherlands Society of Cardiology and the Netherlands Heart Foundation

    2020  Volume 28, Issue 11, Page(s) 565–570

    Abstract: The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding ... ...

    Abstract The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians' lack of time, difficulties in finding the right time to discuss ICD deactivation, patients' reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.
    Language English
    Publishing date 2020-06-16
    Publishing country Netherlands
    Document type Journal Article ; Review
    ZDB-ID 2211468-3
    ISSN 1876-6250 ; 1568-5888 ; 0929-7456
    ISSN (online) 1876-6250
    ISSN 1568-5888 ; 0929-7456
    DOI 10.1007/s12471-020-01438-6
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: Practice of Supporting Family Caregivers of Patients with Life-Threatening Diseases: A Two-phase Study Among Healthcare Professionals.

    Hoffstädt, Hinke E / Boogaard, Jannie A / Tam, Marcella C / van Bodegom-Vos, Leti / Stoppelenburg, Arianne / Hartog, Iris D / van der Linden, Yvette M / van der Steen, Jenny T

    The American journal of hospice & palliative care

    2022  Volume 40, Issue 6, Page(s) 633–643

    Abstract: Background: ...

    Abstract Background:
    MeSH term(s) Humans ; Caregivers ; Qualitative Research ; Health Personnel ; Palliative Care/methods ; Delivery of Health Care
    Language English
    Publishing date 2022-11-27
    Publishing country United States
    Document type Journal Article
    ZDB-ID 1074344-3
    ISSN 1938-2715 ; 1049-9091
    ISSN (online) 1938-2715
    ISSN 1049-9091
    DOI 10.1177/10499091221123006
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  8. Article ; Online: The prognostic value of the 12-, 6-, 3- and 1-month 'Surprise Question' in cancer patients: A prospective cohort study in three hospitals.

    Stoppelenburg, Arianne / Arslan, Müzeyyen / Owusuaa, Catherine / Gunnink, Nicolette / van der Linden, Yvette M / Luelmo, Saskia A C / Meerum-Terwogt, Jetske / van der Padt-Pruijsten, Annemieke / Nieboer, Daan / van der Heide, Agnes

    European journal of cancer care

    2022  Volume 31, Issue 6, Page(s) e13551

    Abstract: Objective: This prospective study aimed to evaluate the performance of the 'Surprise Question' (SQ) 'Would I be surprised if this patient died in the next 12 months?' in predicting survival of 12, 6, 3 and 1 month(s), respectively, in hospitalised ... ...

    Abstract Objective: This prospective study aimed to evaluate the performance of the 'Surprise Question' (SQ) 'Would I be surprised if this patient died in the next 12 months?' in predicting survival of 12, 6, 3 and 1 month(s), respectively, in hospitalised patients with cancer.
    Methods: In three hospitals, physicians were asked to answer SQs for 12/6/3/1 month(s) for inpatients with cancer. Sensitivity, specificity, positive and negative predictive values were calculated.
    Results: A total of 783 patients were included, of whom 51% died in the 12-month period after inclusion. Sensitivity of the SQ predicting death within 12 months was 0.79, specificity was 0.66, the positive predictive value was 0.71 and the negative predictive value was 0.75. When the SQ concerned a shorter survival period, sensitivities and positive predictive values decreased, whereas specificities and negative predictive values increased. In multivariable logistic regression analysis, the SQ was significantly associated with mortality (OR 3.93, 95% CI 2.70-5.71, p < 0.01).
    Conclusions: The 12-month SQ predicts death in patients with cancer admitted to the hospital reasonably well. Shortening the timeframe decreases sensitivities and increases specificities. The four surprise questions may help to identify patients for whom palliative care is indicated.
    MeSH term(s) Humans ; Prognosis ; Prospective Studies ; Palliative Care ; Neoplasms ; Hospitals
    Language English
    Publishing date 2022-01-26
    Publishing country England
    Document type Journal Article
    ZDB-ID 1303114-4
    ISSN 1365-2354 ; 0961-5423 ; 1360-5801
    ISSN (online) 1365-2354
    ISSN 0961-5423 ; 1360-5801
    DOI 10.1111/ecc.13551
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  9. Article ; Online: Physicians' and Public Attitudes Toward Euthanasia in People with Advanced Dementia.

    Brinkman-Stoppelenburg, Arianne / Evenblij, Kirsten / Pasman, H Roeline W / van Delden, Johannes J M / Onwuteaka-Philipsen, Bregje D / van der Heide, Agnes

    Journal of the American Geriatrics Society

    2020  Volume 68, Issue 10, Page(s) 2319–2328

    Abstract: Background/objectives: To explore the opinion of the Dutch general public and of physicians regarding euthanasia in patients with advanced dementia.: Design: A cross-sectional survey.: Setting: The Netherlands.: Participants: Random samples of ... ...

    Abstract Background/objectives: To explore the opinion of the Dutch general public and of physicians regarding euthanasia in patients with advanced dementia.
    Design: A cross-sectional survey.
    Setting: The Netherlands.
    Participants: Random samples of 1,965 citizens (response = 1,965/2,641 [75%]) and 1,147 physicians (response = 1,147/2,232 [51%]).
    Measurements: The general public was asked to what extent they agreed with the statement "I think that people with dementia should be eligible for euthanasia, even if they no longer understand what is happening (if they have previously asked for it)." Physicians were asked whether they were of the opinion that performing euthanasia is conceivable in patients with advanced dementia, on the basis of a written advance directive, in the absence of severe comorbidities. Multivariable logistic regression was performed to identify factors associated with the acceptance of euthanasia.
    Results: A total of 60% of the general public agreed that people with advanced dementia should be eligible for euthanasia. Factors associated with a positive attitude toward euthanasia were being female, age between 40 and 69 years, and higher educational level. Considering religion important was associated with lower acceptance. The percentage of physicians who considered it acceptable to perform euthanasia in people with advanced dementia was 24% for general practitioners, 23% for clinical specialists, and 8% for nursing home physicians. Having ever performed euthanasia before was positively associated with physicians considering euthanasia conceivable. Being female, having religious beliefs, and being a nursing home physician were negatively associated with regarding performing euthanasia as conceivable.
    Conclusion: There is a discrepancy between public acceptance of euthanasia in patients with advanced dementia and physicians' conceivability of performing euthanasia in these patients. This discrepancy may cause tensions in daily practice because patients' and families' expectations may not be met. It urges patients, families, and physicians to discuss mutual expectations in these complex situations in a comprehensive and timely manner. J Am Geriatr Soc 68:2319-2328, 2020.
    MeSH term(s) Adult ; Advance Directives/psychology ; Aged ; Attitude of Health Personnel ; Cross-Sectional Studies ; Dementia ; Educational Status ; Euthanasia/psychology ; Female ; Humans ; Male ; Middle Aged ; Netherlands ; Patient Acceptance of Health Care/psychology ; Physicians/psychology ; Public Opinion
    Language English
    Publishing date 2020-07-11
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 80363-7
    ISSN 1532-5415 ; 0002-8614
    ISSN (online) 1532-5415
    ISSN 0002-8614
    DOI 10.1111/jgs.16692
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  10. Article ; Online: Satisfaction with care of hospitalised patients with advanced cancer in the Netherlands.

    Engel, Marijanne / Brinkman-Stoppelenburg, Arianne / Nieboer, Daan / van der Heide, Agnes

    European journal of cancer care

    2018  Volume 27, Issue 5, Page(s) e12874

    Abstract: We aimed to assess the level of satisfaction with hospital care of patients with advanced cancer and its association with quality of life and other patient characteristics. Eligible patients were asked to fill out the EORTC INPATSAT-32 questionnaire, ... ...

    Abstract We aimed to assess the level of satisfaction with hospital care of patients with advanced cancer and its association with quality of life and other patient characteristics. Eligible patients were asked to fill out the EORTC INPATSAT-32 questionnaire, measuring patient satisfaction, and the EORTC QLQ-C15-PAL, measuring quality of life. Factor analysis was performed to identify underlying patterns in satisfaction. Multivariable regression analyses were used to assess associations of quality of life and other patient characteristics with satisfaction. A total of 105 patients participated in the study. The mean general satisfaction score was 72 (SD 21). Factor analysis identified three underlying dimensions: satisfaction with nurses (explaining 62.1% of the total variance), satisfaction with physicians (7.7%) and satisfaction with hospital services (5.3%). Associations were found between global health and general satisfaction (β = 0.35, p = 0.01), and between emotional functioning and satisfaction with hospital services (β = 0.016, p < 0.01). Further, diagnosis of breast cancer was associated with satisfaction with physicians (β = 1.06, p < 0.01) and dyspnoea with satisfaction with hospital services (β = 0.007, p = 0.03). Patients with advanced cancer are reasonably satisfied with hospital care. The INPATSAT-32 mainly measures satisfaction with nurses. Satisfaction with care and quality of life seems to represent distinct outcomes of hospital care in patients with advanced cancer.
    MeSH term(s) Adult ; Aged ; Cross-Sectional Studies ; Factor Analysis, Statistical ; Female ; Hospice Care/psychology ; Humans ; Male ; Middle Aged ; Neoplasms/nursing ; Neoplasms/psychology ; Neoplasms/therapy ; Netherlands ; Palliative Care/standards ; Patient Satisfaction ; Patient-Centered Care/standards ; Psychometrics ; Quality of Life ; Regression Analysis
    Language English
    Publishing date 2018-07-11
    Publishing country England
    Document type Journal Article ; Multicenter Study
    ZDB-ID 1303114-4
    ISSN 1365-2354 ; 0961-5423 ; 1360-5801
    ISSN (online) 1365-2354
    ISSN 0961-5423 ; 1360-5801
    DOI 10.1111/ecc.12874
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