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A cancer survivorship care plan increased the information patients received yet failed to increase patient satisfaction with cancer care. Moreover, patients who received care plans experienced more symptoms, were more concerned about their illness, and were more affected emotionally than were those who did not, according to a study published online Aug. 24 in Journal of Clinical Oncology.
The Institute of Medicine and other groups recommend survivorship care plans (SCPs) for all cancer survivors to help them deal with the challenges they face after diagnosis. Yet few studies have examined SCPs’ effectiveness. To do so, researchers performed what they described as the first pragmatic, cluster-randomized longitudinal trial comparing an automatically generated SCP against usual care in routine clinical practice.
The study involved 221 women with newly diagnosed endometrial cancer treated at 12 medical centers in the Netherlands. Six of the hospitals were randomly assigned to provide usual care (102 patients) and six to provide SCPs (119 patients) immediately after initial surgery, with updated SCPs offered 6 and 12 months later, said Kim A. H. Nicolaije of Tilburg University and the Comprehensive Cancer Center the Netherlands, Eindhoven, and her associates.
Usual care included verbal and written information about diagnosis and treatment, the recovery period, signs of recurrence, and hospital contacts; no additional information was given during follow-up, except for referrals when indicated.
The SCP entailed a treatment summary tailored to each patient’s diagnostic test results, tumor stage and grade, comorbidities, and evolving complications. It addressed possible short- and long-term effects of the cancer and its treatments on physical, social, and sexual life; signs of recurrence and secondary tumors; services such as rehabilitation, psychosocial support, and supportive care; and contact information for hospital personnel and outside specialists.
At follow-up, participants in the SCP group said they’d received more information about their disease, its treatments, other services available to them, different places where they could seek care, and ways they could help themselves get well, compared with the usual-care group. Yet there were no significant differences between the two study groups in several measures of satisfaction with the information provided or with the care itself. Furthermore, patients in the SCP group said they experienced more symptoms, were more concerned about their illness, and were more affected emotionally than were those in the usual-care group.
The SCPs called for including patients’ primary care physicians in the plans while usual care did not, and patients in the SCP group reported having more cancer-related contact with their primary-care physicians than those in the usual-care group. Yet this increased contact did not lead to better patient satisfaction, Ms. Nicolaije and her associates said (J Clin Oncol 2015 Aug 24. doi:10.1200/JCO.2014.60.3399).
It is unclear whether these effects are harmful or beneficial for patients. “One could argue that receiving an SCP raises patients’ awareness of cancer-related symptoms and empowers them to find the necessary support,” even if they don’t recognize this as a benefit, the investigators added.
The Dutch Cancer Society supported the study. Ms. Nicolaije reported having no conflicts of interest; a coauthor reported receiving research funding and reimbursement for expenses from Janssen Pharmaceuticals.
Survivorship care plans have been recommended for the past decade, but their implementation has been slow, low, and sporadic. And we still don’t have a clear answer as to their effectiveness.
The medical community should recognize that null or negative results on SCP effectiveness, such as those reported by Nicolaije et al., may not reflect some inherent defect of SCPs but rather the poor or inconsistent implementation of an SCP. Fully 26% of the patients in the SCP group in this trial reported that they had never in fact received an SCP.
In addition, being better informed about late or long-term effects of cancer or its treatment may well give rise to “increased concerns” and feeling “more emotionally affected” in the year following diagnosis, but may also yield great benefits later on – a possibility that wasn’t addressed in this trial.
Deborah K. Mayer, Ph.D., is at the University of North Carolina School of Nursing and Lineberger Comprehensive Cancer Center, both in Chapel Hill. She reported having no conflicts of interest; one of her associates reported serving as a consultant to Medivation/Astellas Pharma and receiving research funding from Accuray. Dr. Mayer and her associates made these remarks in an editorial accompanying Ms. Nicolaije’s report (J Clin Oncol 2015 Aug 24. doi:10.1200/JCO.2015.62.6937).
Survivorship care plans have been recommended for the past decade, but their implementation has been slow, low, and sporadic. And we still don’t have a clear answer as to their effectiveness.
The medical community should recognize that null or negative results on SCP effectiveness, such as those reported by Nicolaije et al., may not reflect some inherent defect of SCPs but rather the poor or inconsistent implementation of an SCP. Fully 26% of the patients in the SCP group in this trial reported that they had never in fact received an SCP.
In addition, being better informed about late or long-term effects of cancer or its treatment may well give rise to “increased concerns” and feeling “more emotionally affected” in the year following diagnosis, but may also yield great benefits later on – a possibility that wasn’t addressed in this trial.
Deborah K. Mayer, Ph.D., is at the University of North Carolina School of Nursing and Lineberger Comprehensive Cancer Center, both in Chapel Hill. She reported having no conflicts of interest; one of her associates reported serving as a consultant to Medivation/Astellas Pharma and receiving research funding from Accuray. Dr. Mayer and her associates made these remarks in an editorial accompanying Ms. Nicolaije’s report (J Clin Oncol 2015 Aug 24. doi:10.1200/JCO.2015.62.6937).
Survivorship care plans have been recommended for the past decade, but their implementation has been slow, low, and sporadic. And we still don’t have a clear answer as to their effectiveness.
The medical community should recognize that null or negative results on SCP effectiveness, such as those reported by Nicolaije et al., may not reflect some inherent defect of SCPs but rather the poor or inconsistent implementation of an SCP. Fully 26% of the patients in the SCP group in this trial reported that they had never in fact received an SCP.
In addition, being better informed about late or long-term effects of cancer or its treatment may well give rise to “increased concerns” and feeling “more emotionally affected” in the year following diagnosis, but may also yield great benefits later on – a possibility that wasn’t addressed in this trial.
Deborah K. Mayer, Ph.D., is at the University of North Carolina School of Nursing and Lineberger Comprehensive Cancer Center, both in Chapel Hill. She reported having no conflicts of interest; one of her associates reported serving as a consultant to Medivation/Astellas Pharma and receiving research funding from Accuray. Dr. Mayer and her associates made these remarks in an editorial accompanying Ms. Nicolaije’s report (J Clin Oncol 2015 Aug 24. doi:10.1200/JCO.2015.62.6937).
A cancer survivorship care plan increased the information patients received yet failed to increase patient satisfaction with cancer care. Moreover, patients who received care plans experienced more symptoms, were more concerned about their illness, and were more affected emotionally than were those who did not, according to a study published online Aug. 24 in Journal of Clinical Oncology.
The Institute of Medicine and other groups recommend survivorship care plans (SCPs) for all cancer survivors to help them deal with the challenges they face after diagnosis. Yet few studies have examined SCPs’ effectiveness. To do so, researchers performed what they described as the first pragmatic, cluster-randomized longitudinal trial comparing an automatically generated SCP against usual care in routine clinical practice.
The study involved 221 women with newly diagnosed endometrial cancer treated at 12 medical centers in the Netherlands. Six of the hospitals were randomly assigned to provide usual care (102 patients) and six to provide SCPs (119 patients) immediately after initial surgery, with updated SCPs offered 6 and 12 months later, said Kim A. H. Nicolaije of Tilburg University and the Comprehensive Cancer Center the Netherlands, Eindhoven, and her associates.
Usual care included verbal and written information about diagnosis and treatment, the recovery period, signs of recurrence, and hospital contacts; no additional information was given during follow-up, except for referrals when indicated.
The SCP entailed a treatment summary tailored to each patient’s diagnostic test results, tumor stage and grade, comorbidities, and evolving complications. It addressed possible short- and long-term effects of the cancer and its treatments on physical, social, and sexual life; signs of recurrence and secondary tumors; services such as rehabilitation, psychosocial support, and supportive care; and contact information for hospital personnel and outside specialists.
At follow-up, participants in the SCP group said they’d received more information about their disease, its treatments, other services available to them, different places where they could seek care, and ways they could help themselves get well, compared with the usual-care group. Yet there were no significant differences between the two study groups in several measures of satisfaction with the information provided or with the care itself. Furthermore, patients in the SCP group said they experienced more symptoms, were more concerned about their illness, and were more affected emotionally than were those in the usual-care group.
The SCPs called for including patients’ primary care physicians in the plans while usual care did not, and patients in the SCP group reported having more cancer-related contact with their primary-care physicians than those in the usual-care group. Yet this increased contact did not lead to better patient satisfaction, Ms. Nicolaije and her associates said (J Clin Oncol 2015 Aug 24. doi:10.1200/JCO.2014.60.3399).
It is unclear whether these effects are harmful or beneficial for patients. “One could argue that receiving an SCP raises patients’ awareness of cancer-related symptoms and empowers them to find the necessary support,” even if they don’t recognize this as a benefit, the investigators added.
The Dutch Cancer Society supported the study. Ms. Nicolaije reported having no conflicts of interest; a coauthor reported receiving research funding and reimbursement for expenses from Janssen Pharmaceuticals.
A cancer survivorship care plan increased the information patients received yet failed to increase patient satisfaction with cancer care. Moreover, patients who received care plans experienced more symptoms, were more concerned about their illness, and were more affected emotionally than were those who did not, according to a study published online Aug. 24 in Journal of Clinical Oncology.
The Institute of Medicine and other groups recommend survivorship care plans (SCPs) for all cancer survivors to help them deal with the challenges they face after diagnosis. Yet few studies have examined SCPs’ effectiveness. To do so, researchers performed what they described as the first pragmatic, cluster-randomized longitudinal trial comparing an automatically generated SCP against usual care in routine clinical practice.
The study involved 221 women with newly diagnosed endometrial cancer treated at 12 medical centers in the Netherlands. Six of the hospitals were randomly assigned to provide usual care (102 patients) and six to provide SCPs (119 patients) immediately after initial surgery, with updated SCPs offered 6 and 12 months later, said Kim A. H. Nicolaije of Tilburg University and the Comprehensive Cancer Center the Netherlands, Eindhoven, and her associates.
Usual care included verbal and written information about diagnosis and treatment, the recovery period, signs of recurrence, and hospital contacts; no additional information was given during follow-up, except for referrals when indicated.
The SCP entailed a treatment summary tailored to each patient’s diagnostic test results, tumor stage and grade, comorbidities, and evolving complications. It addressed possible short- and long-term effects of the cancer and its treatments on physical, social, and sexual life; signs of recurrence and secondary tumors; services such as rehabilitation, psychosocial support, and supportive care; and contact information for hospital personnel and outside specialists.
At follow-up, participants in the SCP group said they’d received more information about their disease, its treatments, other services available to them, different places where they could seek care, and ways they could help themselves get well, compared with the usual-care group. Yet there were no significant differences between the two study groups in several measures of satisfaction with the information provided or with the care itself. Furthermore, patients in the SCP group said they experienced more symptoms, were more concerned about their illness, and were more affected emotionally than were those in the usual-care group.
The SCPs called for including patients’ primary care physicians in the plans while usual care did not, and patients in the SCP group reported having more cancer-related contact with their primary-care physicians than those in the usual-care group. Yet this increased contact did not lead to better patient satisfaction, Ms. Nicolaije and her associates said (J Clin Oncol 2015 Aug 24. doi:10.1200/JCO.2014.60.3399).
It is unclear whether these effects are harmful or beneficial for patients. “One could argue that receiving an SCP raises patients’ awareness of cancer-related symptoms and empowers them to find the necessary support,” even if they don’t recognize this as a benefit, the investigators added.
The Dutch Cancer Society supported the study. Ms. Nicolaije reported having no conflicts of interest; a coauthor reported receiving research funding and reimbursement for expenses from Janssen Pharmaceuticals.
FROM JOURNAL OF CLINICAL ONCOLOGY
Key clinical point: A cancer survivorship care plan did not improve endometrial cancer patients’ satisfaction with information provision or with health care.
Major finding: Participants in the SCP group said they had received more information about their disease, its treatments, other services available to them, and ways they could help themselves get well, compared with the usual-care group, but they did not report more satisfaction with the information or with their cancer care.
Data source: A longitudinal, cluster-randomized trial of 221 women with newly diagnosed endometrial cancer treated at 12 hospitals in the Netherlands and followed for 1 year.
Disclosures: The Dutch Cancer Society supported the study. Ms. Nicolaije reported having no conflicts of interest; a coauthor reported receiving research funding and reimbursement for expenses from Janssen Pharmaceuticals.
