Cancer Patients Differ With Docs on QoL Issues

AMSTERDAM  – Ask a hematologist about the most serious quality of life issues for patients with multiple myeloma, and neuropathy typically tops the list. But fatigue, malaise, or muscle weakness was more often concerning to patients who answered a survey on treatment-related side effects.

Cancer patients and their physicians differ to a large extent in their perceptions of a treatment’s impact on quality of life, according to Eric Low, the founder and chief executive of Myeloma UK. Even caregivers with a clear view of day-to-day realities may not see the patients’ point of view.

Although the patients’ caregivers "will often have a more accurate insight into how the cancer is affecting patients than the patients themselves, patients put more emphasis on quality than on longevity of life," he observed, citing data from the United Kingdom and from Europe, with myeloma patients specifically.

Contradictions in how patients and practitioners perceive quality of life was a recurrent theme in talks by patient advocates at the recent annual congress of the European Hematology Association. They described efforts to give patients a stronger voice through Internet-based questionnaires, physician guidelines, and tools for quality of life (QoL) assessment.

"There is such a large difference in perception of quality of life and what doctors think of quality of life in practice of a therapy and symptoms of disease, and what patients perceive about their impact on quality of life and symptoms," said Jan Geissler, a cofounder of the CML [Chronic Myeloid Leukemia] Advocates Network and director of the EUPATI (European Patients’ Academy on Therapeutic Innovation).

For patients on therapy, the need "is not only survival, but includes a lot of factors including quality of life – including, let’s say, how to cope with the disease, psychological factors," added Mr. Geissler, a CML survivor.

Survey Pinpoints Discrepancies

In 2009, Myeloma Euronet – which recently changed its name to Myeloma Patients Europe – conducted a survey to look at the effects of treatment side effects and unmet patient needs in patients with multiple myeloma. The aim was to look at, and compare, the opinions of those affected by the disease, including family members and general caregivers, vs. those of the medical profession.

A total of 314 health care professionals – among them 217 hematologists, 15 medical oncologists, 8 hematologist-oncologists, 68 nurses, and 5 other professionals – from 43 countries took part.

Participants also included 173 patients with multiple myeloma from 17 countries, and 85 relatives and 2 caregivers participating on behalf of myeloma patients from 13 countries. The largest patient contingent came from Poland.

The findings were enlightening, Mr. Low said. Patients and health care providers viewed the potential negative impact of several treatment-related side effects on overall well-being very differently.

Among physicians and nurses (83% and 77%, respectively), neuropathy was most often cited as having a negative impact on a patients’ well-being.

This was followed by a broad category of fatigue/malaise/weakness/dizziness/somnolence/sedation/insomnia, which was cited more often by nurses (72%) than by physicians (60%).

For physicians, infection had the third most negative impact. It was cited by (56%), followed by pain (48%) and thrombotic events (47%). A majority (62%) of nurses put nausea and vomiting in the No. 3 spot, however, followed by pain (57%). Infections and effects on the stomach and/or colon were each cited by 47% of nurses.

Among patients, relatives, and caregivers, the treatment side effect most often cited as compromising daily life fell into the broad category of fatigue/malaise/weakness/dizziness/somnolence/sedation/insomnia. This was cited by 73% of patients and 70% of their relatives and caregivers.

Neuropathy ranked second in negative impact for patients (54%) but was cited less often (45%) by relatives and caregivers, who put effects on the stomach and/or colon in second place (55%). Whereas decreased body function followed as No. 3 in negative impact among patients (53%), hair loss was cited by 52% of relatives and caregivers.

There were also several treatment-related side effects that patients did not report to their doctor, perhaps because they felt uncomfortable to do so. These included sexual problems, diarrhea, constipation, gastrointestinal upsets, and psychological issues, among others.

"Patients often put on a brave face, don’t want to let the side down, and associate [having] a positive outlook with therapeutic benefit," observed Mr. Low.

Moreover, balancing efficacy against side effects is "not what drives the patient all the time," he said. What patients want from treatment is very individual; although some patients may want greater choice or involvement in making decisions about their care, others may not. Some may prefer convenience or fewer side effects; others may want maximum disease control and a long, durable remission.

"It’s important that doctors tweak out what the objectives are for each individual patient and try to facilitate these in terms of how they are managed, and what treatments options are available," Mr. Low said. Quality of life should be considered as much as clinical outcomes, he suggested.

RareConnect Gathers Patient-Reported Information

An initiative called RareConnect could help provide important information about the effects of treatment from the patient perspective. Run by the EURODIS (European Organization for Rare Diseases), and by the U.S.-based NORD (National Organization for Rare Disorders), RareConnect is a social network of rare-disease communities that offers users the opportunity to assess patient-reported quality of life via a series of Internet-based questionnaires.

"What we are trying to do is bring a certain sense of structure now to the way patients can report on outcomes, essentially," said Denis Costello, who is leading the RareConnect project on behalf of EURODIS.

A pilot project is underway in patients with myeloma, he added in an interview. The Internet-based tool involves a series of interactive questionnaires that patients answer at a minimum of once a week. The collected information will include when patients were diagnosed, what treatments they have used, and their sliding-scale ratings of any side effects they have experienced.

RareConnect also allows patients to see how they compare with the rest of the community, and they can discuss their condition with others who are in a similar situation.

To develop a patient-friendly tool with the right level of lightness has been challenging because physicians want it to follow the lines of the quality of life scales and currently available instruments, Mr. Costello said. Physicians "want to get statistically significant data, but patients, we know, are not going to fill in those kinds of questionnaires."

Ultimately, "we want to provide a tool to patients to help them better self-manage their own outcomes in conjunction with their [health care professional], because we feel that this tool can help the patient, and bring a new dynamism between patient and doctor," he explained.

"It’s about discussion, really," Mr. Costello added, noting that the tool could help patients be more aware of their treatment and how it may affect them. In myeloma, for example, it could help prevent patients’ stopping treatment too early and later suffering a relapse.

"We really want to empower patients to see that [perhaps] you need to stay on the treatment a bit longer, and sometimes you need to fight," he suggested. RareConnect and other similar initiatives could provide the starting evidence that patients need to discuss such issues with their doctor.

Measuring Quality of Life

The European Hematology Association’s Scientific Working Group on Quality of Life and Symptoms has just published guidelines on how to assess quality of life in patients with hematologic disorders. Aimed at the practicing hematologist, these guidelines cover hematological malignancies, as well as other blood conditions.

"As physicians, as researchers, we understand that we do have new treatment modalities; we are able to provide good quality of care, but it very important to have the patient perspective to know if we are doing everything in the right way," said Tatyana Ionova, Ph.D., professor of the Postgraduate Education Institute at the National Medical Surgical Center Northwestern Branch in St. Petersburg, Russian Federation.

"Sometimes we may have information about the success or benefit or risks of treatment only from the patient perspective. That is why we try to develop the instruments, [which are] standardized measures that are able to ask the patients about their physical, social, psychological well-being, about [their] symptoms," Dr. Ionova said.

The EHA guidelines on "Patient-Reported Outcomes in Hematology" recognize that there are differences between hematologic diseases in terms of the quality of life assessments that can be used, "because bone marrow transplantation is very different from ITP [immune thrombocytopenic purpura," Dr. Ionova noted.

So how should hematologists measure quality of life? "First, read the guidelines," she suggested. "Then, have some very simple training about the questionnaires and how to use them."

These questionnaires shouldn’t take very long to be completed by or with the patient, she added. The important thing is that quality of life is considered.

The Myeloma Euronet survey was made possible through an unrestricted grant from Ortho Biotech. All authors reported no relevant disclosures other than working for their respective organizations.

AMSTERDAM  – Ask a hematologist about the most serious quality of life issues for patients with multiple myeloma, and neuropathy typically tops the list. But fatigue, malaise, or muscle weakness was more often concerning to patients who answered a survey on treatment-related side effects.

Cancer patients and their physicians differ to a large extent in their perceptions of a treatment’s impact on quality of life, according to Eric Low, the founder and chief executive of Myeloma UK. Even caregivers with a clear view of day-to-day realities may not see the patients’ point of view.

Although the patients’ caregivers "will often have a more accurate insight into how the cancer is affecting patients than the patients themselves, patients put more emphasis on quality than on longevity of life," he observed, citing data from the United Kingdom and from Europe, with myeloma patients specifically.

Contradictions in how patients and practitioners perceive quality of life was a recurrent theme in talks by patient advocates at the recent annual congress of the European Hematology Association. They described efforts to give patients a stronger voice through Internet-based questionnaires, physician guidelines, and tools for quality of life (QoL) assessment.

"There is such a large difference in perception of quality of life and what doctors think of quality of life in practice of a therapy and symptoms of disease, and what patients perceive about their impact on quality of life and symptoms," said Jan Geissler, a cofounder of the CML [Chronic Myeloid Leukemia] Advocates Network and director of the EUPATI (European Patients’ Academy on Therapeutic Innovation).

For patients on therapy, the need "is not only survival, but includes a lot of factors including quality of life – including, let’s say, how to cope with the disease, psychological factors," added Mr. Geissler, a CML survivor.

Survey Pinpoints Discrepancies

In 2009, Myeloma Euronet – which recently changed its name to Myeloma Patients Europe – conducted a survey to look at the effects of treatment side effects and unmet patient needs in patients with multiple myeloma. The aim was to look at, and compare, the opinions of those affected by the disease, including family members and general caregivers, vs. those of the medical profession.

A total of 314 health care professionals – among them 217 hematologists, 15 medical oncologists, 8 hematologist-oncologists, 68 nurses, and 5 other professionals – from 43 countries took part.

Participants also included 173 patients with multiple myeloma from 17 countries, and 85 relatives and 2 caregivers participating on behalf of myeloma patients from 13 countries. The largest patient contingent came from Poland.

The findings were enlightening, Mr. Low said. Patients and health care providers viewed the potential negative impact of several treatment-related side effects on overall well-being very differently.

Among physicians and nurses (83% and 77%, respectively), neuropathy was most often cited as having a negative impact on a patients’ well-being.

This was followed by a broad category of fatigue/malaise/weakness/dizziness/somnolence/sedation/insomnia, which was cited more often by nurses (72%) than by physicians (60%).

For physicians, infection had the third most negative impact. It was cited by (56%), followed by pain (48%) and thrombotic events (47%). A majority (62%) of nurses put nausea and vomiting in the No. 3 spot, however, followed by pain (57%). Infections and effects on the stomach and/or colon were each cited by 47% of nurses.

Among patients, relatives, and caregivers, the treatment side effect most often cited as compromising daily life fell into the broad category of fatigue/malaise/weakness/dizziness/somnolence/sedation/insomnia. This was cited by 73% of patients and 70% of their relatives and caregivers.

Neuropathy ranked second in negative impact for patients (54%) but was cited less often (45%) by relatives and caregivers, who put effects on the stomach and/or colon in second place (55%). Whereas decreased body function followed as No. 3 in negative impact among patients (53%), hair loss was cited by 52% of relatives and caregivers.

There were also several treatment-related side effects that patients did not report to their doctor, perhaps because they felt uncomfortable to do so. These included sexual problems, diarrhea, constipation, gastrointestinal upsets, and psychological issues, among others.

"Patients often put on a brave face, don’t want to let the side down, and associate [having] a positive outlook with therapeutic benefit," observed Mr. Low.

Moreover, balancing efficacy against side effects is "not what drives the patient all the time," he said. What patients want from treatment is very individual; although some patients may want greater choice or involvement in making decisions about their care, others may not. Some may prefer convenience or fewer side effects; others may want maximum disease control and a long, durable remission.

"It’s important that doctors tweak out what the objectives are for each individual patient and try to facilitate these in terms of how they are managed, and what treatments options are available," Mr. Low said. Quality of life should be considered as much as clinical outcomes, he suggested.

RareConnect Gathers Patient-Reported Information

An initiative called RareConnect could help provide important information about the effects of treatment from the patient perspective. Run by the EURODIS (European Organization for Rare Diseases), and by the U.S.-based NORD (National Organization for Rare Disorders), RareConnect is a social network of rare-disease communities that offers users the opportunity to assess patient-reported quality of life via a series of Internet-based questionnaires.

"What we are trying to do is bring a certain sense of structure now to the way patients can report on outcomes, essentially," said Denis Costello, who is leading the RareConnect project on behalf of EURODIS.

A pilot project is underway in patients with myeloma, he added in an interview. The Internet-based tool involves a series of interactive questionnaires that patients answer at a minimum of once a week. The collected information will include when patients were diagnosed, what treatments they have used, and their sliding-scale ratings of any side effects they have experienced.

RareConnect also allows patients to see how they compare with the rest of the community, and they can discuss their condition with others who are in a similar situation.

To develop a patient-friendly tool with the right level of lightness has been challenging because physicians want it to follow the lines of the quality of life scales and currently available instruments, Mr. Costello said. Physicians "want to get statistically significant data, but patients, we know, are not going to fill in those kinds of questionnaires."

Ultimately, "we want to provide a tool to patients to help them better self-manage their own outcomes in conjunction with their [health care professional], because we feel that this tool can help the patient, and bring a new dynamism between patient and doctor," he explained.

"It’s about discussion, really," Mr. Costello added, noting that the tool could help patients be more aware of their treatment and how it may affect them. In myeloma, for example, it could help prevent patients’ stopping treatment too early and later suffering a relapse.

"We really want to empower patients to see that [perhaps] you need to stay on the treatment a bit longer, and sometimes you need to fight," he suggested. RareConnect and other similar initiatives could provide the starting evidence that patients need to discuss such issues with their doctor.

Measuring Quality of Life

The European Hematology Association’s Scientific Working Group on Quality of Life and Symptoms has just published guidelines on how to assess quality of life in patients with hematologic disorders. Aimed at the practicing hematologist, these guidelines cover hematological malignancies, as well as other blood conditions.

"As physicians, as researchers, we understand that we do have new treatment modalities; we are able to provide good quality of care, but it very important to have the patient perspective to know if we are doing everything in the right way," said Tatyana Ionova, Ph.D., professor of the Postgraduate Education Institute at the National Medical Surgical Center Northwestern Branch in St. Petersburg, Russian Federation.

"Sometimes we may have information about the success or benefit or risks of treatment only from the patient perspective. That is why we try to develop the instruments, [which are] standardized measures that are able to ask the patients about their physical, social, psychological well-being, about [their] symptoms," Dr. Ionova said.

The EHA guidelines on "Patient-Reported Outcomes in Hematology" recognize that there are differences between hematologic diseases in terms of the quality of life assessments that can be used, "because bone marrow transplantation is very different from ITP [immune thrombocytopenic purpura," Dr. Ionova noted.

So how should hematologists measure quality of life? "First, read the guidelines," she suggested. "Then, have some very simple training about the questionnaires and how to use them."

These questionnaires shouldn’t take very long to be completed by or with the patient, she added. The important thing is that quality of life is considered.

The Myeloma Euronet survey was made possible through an unrestricted grant from Ortho Biotech. All authors reported no relevant disclosures other than working for their respective organizations.

AMSTERDAM  – Ask a hematologist about the most serious quality of life issues for patients with multiple myeloma, and neuropathy typically tops the list. But fatigue, malaise, or muscle weakness was more often concerning to patients who answered a survey on treatment-related side effects.

Cancer patients and their physicians differ to a large extent in their perceptions of a treatment’s impact on quality of life, according to Eric Low, the founder and chief executive of Myeloma UK. Even caregivers with a clear view of day-to-day realities may not see the patients’ point of view.

Although the patients’ caregivers "will often have a more accurate insight into how the cancer is affecting patients than the patients themselves, patients put more emphasis on quality than on longevity of life," he observed, citing data from the United Kingdom and from Europe, with myeloma patients specifically.

Contradictions in how patients and practitioners perceive quality of life was a recurrent theme in talks by patient advocates at the recent annual congress of the European Hematology Association. They described efforts to give patients a stronger voice through Internet-based questionnaires, physician guidelines, and tools for quality of life (QoL) assessment.

"There is such a large difference in perception of quality of life and what doctors think of quality of life in practice of a therapy and symptoms of disease, and what patients perceive about their impact on quality of life and symptoms," said Jan Geissler, a cofounder of the CML [Chronic Myeloid Leukemia] Advocates Network and director of the EUPATI (European Patients’ Academy on Therapeutic Innovation).

For patients on therapy, the need "is not only survival, but includes a lot of factors including quality of life – including, let’s say, how to cope with the disease, psychological factors," added Mr. Geissler, a CML survivor.

Survey Pinpoints Discrepancies

In 2009, Myeloma Euronet – which recently changed its name to Myeloma Patients Europe – conducted a survey to look at the effects of treatment side effects and unmet patient needs in patients with multiple myeloma. The aim was to look at, and compare, the opinions of those affected by the disease, including family members and general caregivers, vs. those of the medical profession.

A total of 314 health care professionals – among them 217 hematologists, 15 medical oncologists, 8 hematologist-oncologists, 68 nurses, and 5 other professionals – from 43 countries took part.

Participants also included 173 patients with multiple myeloma from 17 countries, and 85 relatives and 2 caregivers participating on behalf of myeloma patients from 13 countries. The largest patient contingent came from Poland.

The findings were enlightening, Mr. Low said. Patients and health care providers viewed the potential negative impact of several treatment-related side effects on overall well-being very differently.

Among physicians and nurses (83% and 77%, respectively), neuropathy was most often cited as having a negative impact on a patients’ well-being.

This was followed by a broad category of fatigue/malaise/weakness/dizziness/somnolence/sedation/insomnia, which was cited more often by nurses (72%) than by physicians (60%).

For physicians, infection had the third most negative impact. It was cited by (56%), followed by pain (48%) and thrombotic events (47%). A majority (62%) of nurses put nausea and vomiting in the No. 3 spot, however, followed by pain (57%). Infections and effects on the stomach and/or colon were each cited by 47% of nurses.

Among patients, relatives, and caregivers, the treatment side effect most often cited as compromising daily life fell into the broad category of fatigue/malaise/weakness/dizziness/somnolence/sedation/insomnia. This was cited by 73% of patients and 70% of their relatives and caregivers.

Neuropathy ranked second in negative impact for patients (54%) but was cited less often (45%) by relatives and caregivers, who put effects on the stomach and/or colon in second place (55%). Whereas decreased body function followed as No. 3 in negative impact among patients (53%), hair loss was cited by 52% of relatives and caregivers.

There were also several treatment-related side effects that patients did not report to their doctor, perhaps because they felt uncomfortable to do so. These included sexual problems, diarrhea, constipation, gastrointestinal upsets, and psychological issues, among others.

"Patients often put on a brave face, don’t want to let the side down, and associate [having] a positive outlook with therapeutic benefit," observed Mr. Low.

Moreover, balancing efficacy against side effects is "not what drives the patient all the time," he said. What patients want from treatment is very individual; although some patients may want greater choice or involvement in making decisions about their care, others may not. Some may prefer convenience or fewer side effects; others may want maximum disease control and a long, durable remission.

"It’s important that doctors tweak out what the objectives are for each individual patient and try to facilitate these in terms of how they are managed, and what treatments options are available," Mr. Low said. Quality of life should be considered as much as clinical outcomes, he suggested.

RareConnect Gathers Patient-Reported Information

An initiative called RareConnect could help provide important information about the effects of treatment from the patient perspective. Run by the EURODIS (European Organization for Rare Diseases), and by the U.S.-based NORD (National Organization for Rare Disorders), RareConnect is a social network of rare-disease communities that offers users the opportunity to assess patient-reported quality of life via a series of Internet-based questionnaires.

"What we are trying to do is bring a certain sense of structure now to the way patients can report on outcomes, essentially," said Denis Costello, who is leading the RareConnect project on behalf of EURODIS.

A pilot project is underway in patients with myeloma, he added in an interview. The Internet-based tool involves a series of interactive questionnaires that patients answer at a minimum of once a week. The collected information will include when patients were diagnosed, what treatments they have used, and their sliding-scale ratings of any side effects they have experienced.

RareConnect also allows patients to see how they compare with the rest of the community, and they can discuss their condition with others who are in a similar situation.

To develop a patient-friendly tool with the right level of lightness has been challenging because physicians want it to follow the lines of the quality of life scales and currently available instruments, Mr. Costello said. Physicians "want to get statistically significant data, but patients, we know, are not going to fill in those kinds of questionnaires."

Ultimately, "we want to provide a tool to patients to help them better self-manage their own outcomes in conjunction with their [health care professional], because we feel that this tool can help the patient, and bring a new dynamism between patient and doctor," he explained.

"It’s about discussion, really," Mr. Costello added, noting that the tool could help patients be more aware of their treatment and how it may affect them. In myeloma, for example, it could help prevent patients’ stopping treatment too early and later suffering a relapse.

"We really want to empower patients to see that [perhaps] you need to stay on the treatment a bit longer, and sometimes you need to fight," he suggested. RareConnect and other similar initiatives could provide the starting evidence that patients need to discuss such issues with their doctor.

Measuring Quality of Life

The European Hematology Association’s Scientific Working Group on Quality of Life and Symptoms has just published guidelines on how to assess quality of life in patients with hematologic disorders. Aimed at the practicing hematologist, these guidelines cover hematological malignancies, as well as other blood conditions.

"As physicians, as researchers, we understand that we do have new treatment modalities; we are able to provide good quality of care, but it very important to have the patient perspective to know if we are doing everything in the right way," said Tatyana Ionova, Ph.D., professor of the Postgraduate Education Institute at the National Medical Surgical Center Northwestern Branch in St. Petersburg, Russian Federation.

"Sometimes we may have information about the success or benefit or risks of treatment only from the patient perspective. That is why we try to develop the instruments, [which are] standardized measures that are able to ask the patients about their physical, social, psychological well-being, about [their] symptoms," Dr. Ionova said.

The EHA guidelines on "Patient-Reported Outcomes in Hematology" recognize that there are differences between hematologic diseases in terms of the quality of life assessments that can be used, "because bone marrow transplantation is very different from ITP [immune thrombocytopenic purpura," Dr. Ionova noted.

So how should hematologists measure quality of life? "First, read the guidelines," she suggested. "Then, have some very simple training about the questionnaires and how to use them."

These questionnaires shouldn’t take very long to be completed by or with the patient, she added. The important thing is that quality of life is considered.

The Myeloma Euronet survey was made possible through an unrestricted grant from Ortho Biotech. All authors reported no relevant disclosures other than working for their respective organizations.