Exploring the Potential of Electronic Patient-Reported Outcome Measures to Inform and Assess Care in Sarcoma Centers

Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else. 20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression. Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims. 18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives. 3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory. 22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact. 5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study. The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage. 9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else. 20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression. Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims. 18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives. 3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact.5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory. 22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study.The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.Background Electronic patient-reported outcome measures (ePROMs) are useful tools to assess care needs of patients diagnosed with cancer and to monitor their symptoms along the illness trajectory. Studies regarding the application of ePROMs by advanced practice nurses (APNs) specialized in sarcoma care and the use of such electronic measures for care planning and assessing quality of care are lacking.To explore the potential of ePROMs in clinical practice for assessing the patient's quality of life, physical functionality, needs, and fear of progression, as well as distress and the quality of care in sarcoma centers.A multicenter longitudinal pilot study design was chosen. Three sarcoma centers with and without APN service located in Switzerland were included. The instruments EQ-5D-5L, Pearman Mayo Survey of Needs, the National Comprehensive Cancer Network Distress Thermometer, PA-F12, and Toronto Extremity Salvage Score were used as ePROMs. Data were analyzed descriptively.Overall, 55 patients participated in the pilot study; 33 (60%) received an intervention by an APN, and 22 (40%) did not. Patients in sarcoma centers with APN service reported overall higher scores in quality of life and functional outcome. The number of needs and distress level were lower in sarcoma centers with APN service. No differences were found with respect to patients' fear of progression.Most of the ePROMs proved to be reasonable in clinical practice. PA-F12 has shown low clinical relevance.Using ePROMs appears to be reasonable to obtain clinically relevant patient information and to evaluate the quality of care in sarcoma centers.Despite more than 100 subtypes, sarcoma is a rare disease with an incidence of approximately 400 cases per year in Switzerland.1 Diagnosis, therapy, and care of patients with sarcoma are often challenging for healthcare teams because of their rare status.2 The provision of good quality care requires a specialized, interprofessional, and multidisciplinary healthcare team that can address the complex care needs of the patients and their relatives.3 Overall, patients with sarcoma often experience heavy physical and psychological burdens caused by the indicated therapy, such as surgery, chemotherapy, and/or radiotherapy. These burdens also impact their families emotionally and financially.4 Healthcare professionals providing targeted information throughout the care pathway can support patients and their families to feel better informed about the care trajectory and to cope with the diagnosis and its multidimensional impact. 5 However, there are only a few healthcare professionals in Europe with specialized knowledge in caring for patients with sarcoma who can provide the targeted care that is needed.6 In a bid to address the specific care demands related to the diagnosis, dedicated sarcoma centers were established.7,8 There are indications that such centers account for higher survival rates, better patient experience, and higher quality of care during the care trajectory, and especially at the end-of-life stage.9,10 Sarcoma centers were integrated into the Swiss healthcare system in 2013, and some centers have employed advanced practice nurses (APNs)11 similar to other cancer care centers, for example, prostate cancer,12 lung cancer,13 breast cancer,14 and hematological cancer.15 Advanced practice nurses are seen as an effective solution to address the complex care needs of patients with cancer and their relatives. The APN's multiple interventions, which are aimed at assessing standardized patients' and relatives' needs along the care trajectory and supporting each patient's self-management, result in timely care coordination within the interprofessional team and better patient outcomes in coping with the therapeutic adverse effects.10,16Electronic patient-reported outcome measures (ePROMs) are evolving to monitor symptoms and needs of patients diagnosed with cancer and to evaluate care quality.17-19 Patient-reported outcomes are understood as any report on the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.20 Traditionally, patient-reported outcome measures are used for the quality assurance of medical treatment,21 but ePROMs can also be used as part of clinical practice and performance measurement.17,22,23 In this context, measures can directly inform the care planning, for example, by APNs, allowing them to take into account the patient's responses with respect to their symptoms and needs.19,24For example, one scoping and one narrative review summarized patient-reported outcome measures used with patients with sarcoma and concluded that quality-of-life outcomes and functional outcomes were used most often.18,25 On the other hand, measures assessing unmet needs and psychological outcomes were assessed less often because of differences in project aims.18 However, a common understanding that patient-reported outcome measures are necessary to monitor the quality of care in sarcoma centers is lacking.18,25 In Switzerland, ePROMs are still innovative in cancer care, used to monitor cancer symptoms and to evaluate APN cancer services. Therefore, there are no accepted benchmarks in this context.26,27In summary, ePROMs present an innovative strategy to assess standardized cancer care needs and to monitor symptoms along the cancer care trajectory.22 Only one study could be found researching the implementation and use of ePROMs by APNs in cancer care,15 and another publication could be found describing the contribution and role of a clinical nurse specialist in a tertiary sarcoma referral service.28 No study was found that addressed the use of ePROMs by APNs in the care of patients with sarcoma and how the electronic measures could inform the planning of care. Addressing the research gap, the objective of this pilot study was to support 3 sarcoma centers (2 with APN service, 1 without APN service) during the implementation of ePROMs as a preparatory step when planning for an experimental study. The aim was to explore the potential of ePROMs as a tool to describe the quality of care in sarcoma centers and assess the patient's quality of life, physical functionality, the amount and burden of needs, and fear of progression, as well as distress in sarcoma center care.