Unmet care needs of patients with advanced cancer and their relatives: multicentre observational study.

OBJECTIVES: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support. METHODS: This cross-sectional study used data from the eQuiPe study: an observational cohort study in which 40 Dutch hospitals participated. All adult patients with a diagnosis of a metastasised tumour and their relatives were eligible. Measures included information on the patients' and relatives' care problems and needs, assessed by the short version of the Problems and Needs in Palliative Care questionnaire. Socioeconomic demographics were also collected. RESULTS: 1103 patients with advanced cancer and 831 relatives were included. Both patients (M=60.3, SD=29.0) and relatives (M=59.2, SD=26.6) experienced most problems in the domain of 'psychological issues'. Both patients (M=14.0, SD=24.2) and relatives (M=17.7, SD=25.7) most frequently reported unmet needs within this domain. The most often reported unmet need by patients was 'worrying about the future of my loved ones' (22.0%); for relatives this was 'fear for physical suffering of the patient' (32.8%). There was no clear relationship between socioeconomic demographics and the experienced unmet needs. CONCLUSIONS: The most often mentioned unmet needs consisted of fears and worries, followed by a broad range of topics within multiple domains. Centres for information and support may play a role in reducing the unmet needs of (potential) visitors as these centres provide support on a broad range of topics.

Emotional functioning during bereavement after the death of patients with advanced cancer and associated factors.

OBJECTIVE: The death of a loved one is considered to be the most stressful of all life events. However, the impact of bereavement on quality of life varies between individuals. The aim of our study was to assess emotional functioning (EF), which is a domain of quality of life, of bereaved relatives after the death of their loved one and its associated factors. METHOD: A prospective, longitudinal, multicenter, observational study on quality of care and quality of life of patients with advanced cancer and their relatives was conducted (eQuiPe). The association between EF of relatives during bereavement and the following factors was investigated: gender, type of relationship, educational level, pre-bereavement emotional and social functioning and global quality of life, social support pre- and during bereavement, anticipatory complicated grief, support of healthcare professionals during bereavement, age of patient and bereaved relative and duration of survival after primary cancer diagnosis. RESULTS: 150 bereaved relatives completed the bereavement questionnaire. In 41% of the bereaved relatives EF was ≤71, indicating clinically relevant low EF. Multivariable logistic regression showed that females experienced more often emotional problems (OR = 2.82). Emotional functioning pre-bereavement (OR = 0.96) and social support during bereavement (OR = 0.97) were associated with low EF during bereavement. CONCLUSIONS: Almost half of the bereaved relatives of patients with advanced cancer experienced low EF and this was associated with low EF pre-bereavement and low social support during bereavement. Support for relatives should be initiated before the patient's death. Future research is needed to investigate the impact of such support on relatives' wellbeing during bereavement.

Caregiver activation of relatives of patients with advanced cancer.

OBJECTIVE: Relatives of patients with advanced cancer often have many caring responsibilities. Not everyone may have sufficient knowledge, skills, and confidence-also known as caregiver activation-to provide such care. We assessed caregiver activation in relatives and its association with their personal characteristics and their own well-being. METHODS: A cross-sectional study among relatives of patients with advanced cancer. Measures included caregiver activation (C-PAM), resilience, personal self-care, caregiver burden, depressive symptoms, quality of life, and social well-being. The C-PAM distinguishes four levels of activation, ranging from poor (level 1) to adequate (level 4). Bivariate and multivariable regression analyses were performed. RESULTS: Two hundred fifty-four relatives were included; 32% had level 1 activation, 30% level 2, 27% level 3 and 11% level 4. Higher levels of caregiver activation were found among partners, those who provided more hours of informal care, were more resilient, and scored higher on personal self-care. Higher caregiver activation was associated with lower caregiver burden, less depressive symptoms, and better social well-being. CONCLUSION: In our study, the majority of relatives seem insufficiently prepared to provide care for their loved one. Supporting them in gaining knowledge, skills, and confidence to provide such care may improve their own well-being.

Dyadic coping and its association with emotional functioning in couples confronted with advanced cancer: Results of the multicenter observational eQuiPe study.

OBJECTIVE: How patients and their partners cope with advanced cancer as a couple, may impact their emotional functioning (EF). The aim of this study was to assess dyadic coping (DC) of couples confronted with advanced cancer and its association with EF. METHODS: Actor-partner interdependence models were used to analyze baseline data of 566 couples facing advanced cancer participating in an observational study on quality of care and life. Measures included the DC Inventory and the European Organization for Research and Treatment of Cancer quality of life questionnaire (EOQLQ-C30). RESULTS: Negative DC (mean 86-88) was most often used and common DC (both mean 66) was least often used. We found small to moderate interdependence (r = 0.27-0.56) between patients' and partners' DC perceptions. Compared to partners, patients were more satisfied with their DC (p < 0.001). Partners' satisfaction with DC was positively associated with their own (B = 0.40, p < 0.001) and patients' (B = 0.23, p = 0.04) EF. We found positive actor (patients B = 0.37 B = 0.13, p = 0.04) and partner (both B = 0.17, p < 0.05) associations for negative DC in patients and partners. Partners' supportive DC was negatively associated with patients (B = -0.31, p = 0.03) and partners' EF (B = -0.34, p = 0.003). CONCLUSIONS: This study highlight the importance of DC (especially from the partners' perspective) for EF in advanced cancer but also identifies differences in the experience of patients and their partners. Future research is needed to understand the mechanisms of such relations and the common and unique support options that may facilitate adjustment in patients with advanced cancer and their partners.

Quality of life and quality of care as experienced by patients with advanced cancer and their relatives: A multicentre observational cohort study (eQuiPe).

AIM: This study aims to assess the quality of life and quality of care as experienced by patients with advanced cancer and their relatives while taking their interdependency into account. METHODS: A prospective multicentre observational study (eQuiPe study) was conducted. Quality of life scores (EORTC QLQ-C30) was compared to a matched normative population and logistic regression analyses were conducted to assess the relation between high emotional functioning (EF, measured with the EORTC QLQ-C30) and experienced quality of care (IN-PATSAT32, CQ-index PC). RESULTS: In total, 1103 (65%) patients and 831 (71%) relatives completed the baseline questionnaire, including 699 unique patient-relative couples. Patients experienced lower EF than the normative population (78 versus 87, p < .001). Compared to patients, relatives reported clinically relevantly lower EF (69 versus 78, p < .001). Being more satisfied with care in general (p < .05) and clarity about the key health-care provider (p < .05) was positively associated with high EF in patients. For relatives, experienced continuity of care (p < .01) and information for the patient (p < .05) were positively associated with high EF. The EF of patients (p < .001) and relatives (p < .001) were positively associated with each other and continuity of care as perceived by relatives was positively associated with high EF in patients (p < .01). CONCLUSIONS: Patients with advanced cancer reported low levels of EF but their relatives reported even lower levels of EF. Experienced integrated organisation and satisfaction with care were positively related to EF. The interdependent relation between patients' and relatives' EF and their care experiences suggests that a family-centred approach can optimise palliative cancer care. TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Sexual health and closeness in couples coping with advanced cancer: Results of a multicenter observational study (eQuiPe).

BACKGROUND: Cancer and its treatment can severely affect sexual health. It is unknown how this may relate to the feelings of closeness between patients and their partners. AIM: To assess the association between sexual health and closeness in the relationship in couples coping with advanced cancer. DESIGN: This study was part of a prospective multicentre longitudinal observational cohort study on experienced quality of care and quality of life in patients with advanced cancer and their relatives (eQuiPe). SETTING/PARTICIPANTS: Baseline data regarding sexual health and closeness in people with advanced cancer and their partners. RESULTS: Out of the 566 dyads, 14 were same-sex couples. Especially male partners showed an interest in sex, but more than half of all patients and partners were not sexually active. Approximately one third experienced sexual dysfunction to be a problem but did not seek specialized support (<10%). There was a positive association between own sexual satisfaction and feelings of closeness in the relationship, which was stronger for partners compared to patients (p < 0.001). Sexual satisfaction of the other person was also related to own feelings of closeness (p = 0.003). CONCLUSIONS: Couples coping with advanced cancer clearly face challenges regarding sexual health but are not likely to seek specialized support. When discussing sexual health, it is crucial that health care professionals pay attention to the aspects of sexual health that may contribute to feeling close to each other and suggest specialized care if necessary. TRIAL REGISTRATION: The eQuiPe study is registered as NTR6584 in the Netherlands Trial Register.

Shared Perspectives of Patients With Advanced Cancer and Their Informal Caregivers on Essential Aspects of Health Care: A Qualitative Study.

Objective: The aim of this study is to explore the essential aspects of health care according to patients with advanced cancer and their informal caregivers by using a dyadic approach. Methods: Seven focus groups and 7 in-depth semi-structured interviews were conducted. Patients with advanced cancer and informal caregivers were recruited between January 2017 and June 2017 in 6 Dutch hospitals. All interviews were audiotaped, transcribed verbatim, and open coded using a thematic analysis approach. For this analysis Atlas.ti was used. Results: There was congruence between the aspects mentioned by patients and their informal caregiver. Two essential aspects of quality of care arose: "relation" and "organization of care." Regarding relation, patients and informal caregivers found it essential that health care professionals were personally engaged and provided support and compassion. Regarding organization of care, patients and informal caregivers expressed the importance of supportive care being offered multiple times during the disease trajectory, continuity of care, and well-organized logistics tailored to their needs. Conclusion: This study generates awareness among health care professionals that patients with advanced cancer and their relatives have similar perspectives on essential aspects of care and may increase anticipation to meet health care preferences to optimize care.

Assessing measurement invariance in the EORTC QLQ-C30.

PURPOSE: We aimed to investigate measurement invariance (MI) in the European Organisation for research and treatment of cancer quality of life questionnaire core 30 (EORTC QLQ-C30) in a heterogeneous sample of patients with cancer. METHODS: Data from 12 studies within the PROFILES registry were used for secondary analyses (n = 7007). We tested MI by successive restrictions on thresholds, loadings, and intercepts across subgroups based on primary cancer sites, age, sex, time since diagnosis, and life stage, using multigroup confirmatory factor analysis (MGCFA) for ordered categorical measures. We also evaluated the impact of potentially miss-specified parameter equality across groups on latent factor means by releasing threshold and loading equality constraints for each item at a time. RESULTS: Results showed that the highest level of MI (invariance of thresholds, loadings, and intercepts) was found across groups based on time since diagnosis and life stage and to a lesser extent across groups based on sex, age, and primary tumor site. On item level, however, changes in the item's associated factor means were relatively small and in most cases canceled each other out to some extent. CONCLUSIONS: Given only a few instances of non-invariance in our study, there is reason to be confident that valid conclusions can be drawn from between-group comparisons of QLQ-C30 latent means as operationalized in our study. Nonetheless, further research into MI between other subgroups for the QLQ-C30 (i.e., treatment effects and ethnicity) is warranted. We stress the importance of including MI evaluations in the development and validation of measurement instruments.

Spiritual Well-Being and Associated Factors in Dutch Patients With Advanced Cancer.

CONTEXT: Palliative care aims to support patients' spiritual needs with the intention of promoting their spiritual well-being (SWB), an important dimension of quality of life. SWB is one of the less-studied dimensions of QoL, particularly in a secular country such as the Netherlands. OBJECTIVES: In this study we aimed to get a better understanding of SWB in Dutch patients with advanced cancer. We therefore examined its prominence and associated factors. METHODS: We used the baseline data of a cohort study on experienced quality of care and quality of life (eQuiPe study), which included 1,103 patients with advanced cancer. In addition to sociodemographic and religious/spiritual characteristics, study measures comprised the SWB subscales Meaning, Peace, and Faith of the revised FACIT-Sp-12, spiritual problems and needs (PNPCsv), quality of life (EORTC-QLQ-C30) and satisfaction with healthcare professionals' interpersonal skills (INPATSAT-32). RESULTS: On average, patients experienced quite a bit of Meaning (8.9, SD 2.3), a little bit to somewhat Peace (6.8, SD 2.7), and very low levels of Faith (2.9, SD 3.7). Two-thirds (71%) of patients reported one or more spiritual problems, for which the majority (54%) wanted to receive attention. In the final multivariable models, only a few factors were associated with SWB, such as greater spiritual needs with lower levels of Meaning and Peace. CONCLUSION: Dutch patients with advanced cancer experience medium to low levels of Meaning, Peace, and Faith. More attention for their SWB is warranted.

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study.

PURPOSE: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden. METHODS: This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden. RESULTS: Most of the 746 relatives were the patient's partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR = .87) and were less resilient (OR = .76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR = .96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR = .39). CONCLUSION: A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation. TRIAL REGISTRATION NUMBER: NTR6584 (date of registration: 30 June 2017).

Bereaved relatives' quality of life before and during the COVID-19 pandemic: Results of the prospective, multicenter, observational eQuiPe study.

BACKGROUND: The death of a loved one is considered as one of the most stressful life events. During the COVID-19 pandemic, grief processes are potentially affected by measures such as social distancing and self-quarantine. AIM: The aim of this study was to give insight in the impact of the COVID-19 pandemic on quality of life, social support, and self-care of bereaved relatives of people with advanced cancer in order to evaluate whether care for bereaved relatives during the COVID-19 pandemic should be improved. DESIGN: A cross-sectional analysis using data from bereaved relatives of a prospective, longitudinal, multicenter, observational study on quality of care and quality of life of people with advanced cancer and their (bereaved) relatives (eQuiPe). SETTING/PARTICIPANTS: Quality of life, social support, and self-care of bereaved relatives who completed a questionnaire within 3-6 months after their relative died during COVID-19 (April-November 2020) were compared with bereaved relatives who completed this questionnaire pre-COVID-19 (April-November 2019). RESULTS: Ninety-one bereaved relatives were included in the analysis, 44 bereaved relatives completed the questionnaire pre-COVID-19 and 47 during COVID-19. The median age of the participants was 65 (IQR = 14) years and 58% were female. There were no significant differences between the pre-COVID-19 and during COVID-19 bereaved relatives in quality of life (68 vs 69), social support (17 vs 18), and self-care (20 vs 19). CONCLUSIONS: On the short-term, the COVID-19 pandemic did not have significant impact on bereaved relatives' wellbeing. However, long-term impact of the pandemic on their wellbeing should be assessed.

Validation of the FACIT-Sp-12 in a Dutch cohort of patients with advanced cancer.

OBJECTIVE: Although the Dutch Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being 12 Item Scale (FACIT-Sp-12) has been used in several Dutch studies, no study has assessed the measurement properties of the translation. The aim of this study was to perform an item-reduction analysis, confirmatory factor analysis (CFA), test of reliability, and test of convergent validity. METHODS: From the baseline data of a cohort study on experienced quality of care and quality of life (eQuiPe study), 400 advanced cancer patients without missing values on any of the variables were selected. In addition to demographic and religious/spiritual characteristics, study measures included the FACIT-Sp-12 and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 (EORTC-QLQ-C30). RESULTS: Item reduction analysis showed that Items 4 and 8 had low correlations to the total scale (<0.30). Items 6 and 7, and Items 9, 10, and 11 were highly correlated (>0.75). CFA indicated a good fit for a three-factor structure with Meaning, Peace and Faith, and good Cronbach's α coefficients for the total as well as the subscales (0.71-0.86). The removal of Items 4, 8, and 12 further improved the goodness of fit and Cronbach's α coefficients. Convergent validity was adequate with the EORTC-QLQ-C30. CONCLUSION: Our analysis of the FACIT-Sp-12 revealed serious questions about three items and concerns about the Faith subscale. These problematic items deserve further attention so should be interpreted with care when using this scale. A future study could look into the items and test possible replacements.

Perceptions of involvement in advance care planning and emotional functioning in patients with advanced cancer.

PURPOSE: Advance Care Planning (ACP) is positively associated with the quality of care, but its impact on emotional functioning is ambiguous. This study investigated the association between perceptions of ACP involvement and emotional functioning in patients with advanced cancer. METHODS: This study analyzed baseline data of 1,001 patients of the eQuiPe study, a prospective, longitudinal, multicenter, observational study on quality of care and quality of life in patients with advanced cancer in the Netherlands. Patients with metastatic solid cancer were asked to participate between November 2017 and January 2020. Patients' perceptions of ACP involvement were measured by three self-administered statements. Emotional functioning was measured by the EORTC-QLQ-C30. A linear multivariable regression analysis was performed while taking gender, age, migrant background, education, marital status, and symptom burden into account. RESULTS: The majority of patients (87%) reported that they were as much involved as they wanted to be in decisions about their future medical treatment and care. Most patients felt that their relatives (81%) and physicians (75%) were familiar with their preferences for future medical treatment and care. A positive association was found between patients' perceptions of ACP involvement and their emotional functioning (b=0.162, p<0.001, 95%CI[0.095;0.229]) while controlling for relevant confounders. CONCLUSIONS: Perceptions of involvement in ACP are positively associated with emotional functioning in patients with advanced cancer. Future studies are needed to further investigate the effect of ACP on emotional functioning. TRIAL REGISTRATION NUMBER: NTR6584 Date of registration: 30 June 2017 IMPLICATIONS FOR CANCER SURVIVORS: Patients' emotional functioning might improve from routine discussions regarding goals of future care. Therefore, integration of ACP into palliative might be promising.

Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol.

BACKGROUND: Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care. METHODS: A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients' death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors. DISCUSSION: This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care. TRIAL REGISTRATION: Trial NL6408 ( NTR6584 ). Registered in Netherlands Trial Register on June 30, 2017.

Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study.

PURPOSE: Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers. METHODS: Seven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach. RESULTS: Social consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations. CONCLUSIONS: Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.

Optimistic, realistic, and pessimistic illness perceptions; quality of life; and survival among 2457 cancer survivors: the population-based PROFILES registry.

BACKGROUND: Threatening illness perceptions (IPs) have been associated with poorer health outcomes. However, to the authors' knowledge, it remains unclear whether threatening IPs that are consistent with disease severity are equally harmful. The aim of the current study was to: 1) identify subgroups of cancer survivors based on IPs and prognosis; and 2) assess the health-related quality of life (HRQOL) and survival associated with these subgroups. METHODS: The authors used survey data from the population-based Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES) registry, which were collected between 2008 and 2015 and included 2457 cancer survivors who were <5 years after their cancer diagnosis (colon, rectal, prostate, endometrial, or ovarian cancer or non-Hodgkin lymphoma). Clinical and survival data were collected through the Netherlands Cancer Registry. Subgroups were defined by IPs (Brief Illness Perception Questionnaire) and prognosis (conditional 5-year relative survival) into survivors with 1) IPs consistent with prognosis ("realistic"); 2) less threatening IPs than expected based on prognosis ("optimistic"); and 3) more threatening IPs than expected based on prognosis ("pessimistic"). RESULTS: Compared with survivors with realistic IPs (1230 survivors), those with optimistic IPs (582 survivors) were found to have a higher HRQOL (P < .01 on all European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 [EORTC QLQ-C30] scales) and a lower all-cause mortality (hazard ratio, 0.72; P < .01), whereas those with pessimistic IPs (645 survivors) had a lower HRQOL (P < .01 on all scales) and a higher all-cause mortality (hazard ratio, 1.52; P < .01). CONCLUSIONS: Optimistic IPs are associated with better HRQOL and survival, even if they may appear to be unrealistic with respect to cancer survivors' prognosis. Survivors with pessimistic IPs appear to have the worst outcomes. Therefore, efforts are needed to provide better support to patients with pessimistic IPs to improve their outcomes. Cancer 2018;124:3609-17. © The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Measuring health-related quality of life in patients with advanced cancer: a systematic review of self-administered measurement instruments.

PURPOSE: Patient-reported outcome measures (PROMs) are becoming increasingly important in clinical practice. The implementation of PROMS in routine practice is challenging because information regarding psychometric quality of measurement instruments is fragmented and standardization is lacking. The aim of this study is to evaluate the quality of self-administered HRQoL measurement instruments for use in patients with advanced cancer in clinical practice. METHODS: A systematic literature search was performed in PubMed, Embase, PsycINFO, and CINAHL to identify studies concerning self-administered HRQoL measurement instruments in patients with advanced cancer between January 1990 and September 2016. Quality of the measurement instruments was assessed by predefined criteria derived from the COSMIN checklist. RESULTS: Sixty-nine articles relating to 39 measurement instruments met the inclusion criteria. Information regarding important measurement properties was often incomplete. None of the instruments performed sufficient on all measurement properties. Considering available information, the EORTC QLQ-C15-PAL appeared to have adequate psychometric properties, together with the EORTC QLQ-BM22. CONCLUSIONS: Many of the existing HRQoL measurement instruments have not yet been evaluated in an adequate manner. Validation of self-administered HRQoL measurement instruments is an ongoing development and should be prioritized. This review contributes to improved clarity regarding the availability and quality of HRQoL measurement instruments for patients with advanced cancer and supports health care professionals in an adequate selection of suitable PROMs in clinical practice.