Supportive Care in Cancer

, Volume 14, Issue 6, pp 548–557

Promulgation of guidelines for mucositis management: educating health care professionals and patients

Authors

    • School of NursingUniversity of Maryland
  • Judith Johnson
    • HealthQuest
  • Cesar Migliorati
    • College of Dental MedicineNova Southeastern University
Original Article

DOI: 10.1007/s00520-006-0060-7

Cite this article as:
McGuire, D.B., Johnson, J. & Migliorati, C. Support Care Cancer (2006) 14: 548. doi:10.1007/s00520-006-0060-7

Abstract

Background

The Multinational Association for Supportive Care in Cancer/International Society of Oral Oncology (MASCC/ISOO) Mucositis and Patient and Professional Education Study Groups are collaborating to improve the promulgation of the updated mucositis management guidelines. The initial step in the collaboration was to survey cancer care health professionals to determine their awareness of the original 2004 guidelines and their opinions on the usefulness of patient educational materials based on the guidelines.

Materials and methods

The authors surveyed four samples (three US and one European) of cancer health care professionals attending three cancer-related professional conferences between May and July 2005 using a ten-item questionnaire in both paper-and-pencil and web-based formats. Data were compiled and analyzed using descriptive statistics.

Results

All respondents were generally aware of the importance of mucositis as a treatment-limiting toxicity with life-threatening complications and endorsed regular oral assessment and dental care practices. Only about one third of the US respondents were aware of the 2004 guidelines in contrast to 80% of the European respondents. A majority of respondents across all four surveys (66–93%) felt strongly that educational materials based on the guidelines were needed and that they would use them, while a smaller number (7–29%) indicated they might use them if a patient had a problem with mucositis.

Conclusions

Awareness of the guidelines remains limited in the US, and use of the guidelines worldwide is minimal. The Mucositis and Patient and Professional Education Study Groups have developed a set of strategies to enhance dissemination, awareness, and use of the updated guidelines and to promote patient education based on the guidelines. Future work will focus on implementation and evaluation of the guidelines in clinical practice.

Keywords

MucositisHealth care professional educationPatient educationClinical practice

Introduction and background

The best clinical practice guidelines in the world are useless without dissemination to potential users and without application to appropriate patient populations. There is ample evidence that simple dissemination of new information such as evidence-based clinical practice guidelines for mucositis is a challenge in the health care field [11]. Lack of information about the importance and implementation of oral care during cancer treatment is a major barrier to implementation of systematic oral care protocols [8]. Recent surveys indicate that health care professionals do not routinely implement the most current knowledge about oral care during cancer treatment [3] and that, even among reasonably well-informed nurses with master’s degrees, a variety of practices occur, many of which are not evidence based [7]. If health care professionals are not even aware of new information such as evidence-based clinical practice guidelines for managing mucositis [13], they will not use them in practice nor educate patients and their families.

Despite the formal dissemination of the Multinational Association for Supportive Care in Cancer/International Society of Oral Oncology (MASCC/ISOO) 2004 mucositis management guidelines through a peer-reviewed publication in Cancer and a variety of presentations at professional conferences, the Mucositis Study Group remained concerned about whether the guidelines were read or adopted by target end users such as cancer nurses, physicians, dental professionals, and others. At the same time, the Patient and Professional Education Study Group had an interest in improving patient education related to oral complications of cancer treatment, specifically mucositis. These two study groups decided to collaborate on a long-term education project that would focus on the dissemination, use, and evaluation of the mucositis management guidelines. The authors of this paper volunteered to lead this project as the first joint venture between two MASCC/ISOO study groups. As oncology nurses (DBM and JJ) and dentist (CM), they have a long-standing interest in evidence-based oral care for cancer patients and education of health care providers, patients, and family members [5, 8, 10].

The first step in the collaboration was to explore whether health care professionals involved in supportive care around the world were aware of and had used the 2004 mucositis guidelines in their practice. Without adequate dissemination (defined by Merriam-Webster [12] as ‘dispersal’), the adoption and use of new information is unlikely to occur. Effective strategies to promote such adoption cannot be consequently developed. Therefore, the purpose of this paper is to report the results of several surveys undertaken to determine cancer health care professionals’ general knowledge of oral complications of cancer treatment, awareness and use of the 2004 guidelines, and opinions regarding potential usefulness of educational materials based on the guidelines. The ultimate goal of the MASCC/ISOO Mucositis and Patient and Professional Education Study Groups is the promulgation (defined as Merriam-Webster [12] as ‘putting into use’) of the guidelines in clinical practice to improve outcomes for patients.

Materials and methods

After meeting at the 2004 MASCC/ISOO scientific meeting in Miami, FL, USA and conversing later by telephone to consider key areas of interest, the authors drafted survey questions. They then solicited input from several members of MASCC/ISOO who had oral care and/or methodological expertise and from survey research experts. Using this input, the authors refined the questions and compiled them into a ten-item survey designed for completion in either paper-and-pencil or web-based format (see Tables 1, 2, and 3).
Table 1

Responses of 378 nurses who attended a satellite symposium on supportive care at the 2005 ONS Congress

N=378 (individual questions may be less due to missing data)

Questionnaire items and possible responses

Frequencies and percentages

Question 1. Which group of patients would you expect to have the most severe levels of oral mucositis?

N=374

 A. Hematopoietic stem cell transplant

28/7.49%

 B. Standard outpatient chemotherapy

2/0.53%

 C. Radiation therapy for head and neck cancer

299/79.95%

 D. All groups would be expected to have the same levels

45/12.03%

Question 2. Oral mucositis may lead to life-threatening and expensive complications

N=371

 A. Always

82/22.1%

 B. Sometimes

273/73.58%

 C. Rarely

16/4.31%

 D. Never

0

Question 3. Oral mucositis is an expected side effect that is usually nothing to worry about

N=365

 A. Always

12/3.29%

 B. Sometimes

45/12.33%

 C. Rarely

63/17.26%

 D. Never

245/67.12%

Question 4. Oral mucositis can be a dose-limiting side effect that may prevent delivery of optimal cancer treatment

N=374

 A. Always

99/26.47%

 B. Sometimes

242/64.71%

 C. Rarely

18/4.81%

 D. Never

4/1.07%

Question. 5 What is your opinion on whether cancer patients should see a dentist before starting their cancer treatment?

N=370

 A. It does not matter if they see a dentist.

2/0.54%

 B. Patients should be able to choose.

7/1.89%

 C. It definitely makes a difference.

288/77.84%

 D. It depends on the treatment regimen or protocol.

73/19.73%

Question 6. How often should mouth assessment be done during muco-toxic cancer treatment?

N=366

 A. Once a day

211/57.65%

 B. After each meal

148/40.44%

 C. Only when there are problems such as dryness or soreness

7/1.91%

 D. Assessment is not that important.

0

Question 7. Who provides information about mucositis to patients where you practice?

N=368

 A. The nurse

358/97.28%

 B. The oncologist

8/2.17%

 C. Family and/or friends

1/0.27%

 D. No one

1/0.27%

Question 8. The Multinational Association for Supportive Care in Cancer (MASCC) recently published evidence-based clinical practice guidelines for managing mucositis. Which of the following best describes your experience with these guidelines?

N=350

 A. I have never heard of the guidelines.

238/68%

 B. I have heard of the guidelines but have not tried to use them.

70/20%

 C. I have considered using these guidelines.

22/6.29%

 D. I have used these guidelines in my practice.

20/5.71%

Question 9. If you have tried to use the MASCC guidelines in your practice, which statement best describes your experience?

N=57

 A. The guidelines were clear, relevant, and useful.

29/50.88%

 B. Only certain parts of the guidelines were useful.

8/14.04%

 C. Colleagues were not receptive to the guidelines.

3/5.26%

 D. My institution was not supportive.

17/29.82%

Question 10. What is your opinion about having patient educational materials based on the MASCC guidelines?

N=303

 A. I feel strongly that they are needed and would use them.

247/81.52%

 B. I might use them if a patient had a problem with mucositis.

39/12.87%

 C. There are already enough patient education materials on mucositis.

2/0.66%

 D. I do not feel strongly one way or the other.

15/4.95%

Table 2

Responses of 74 nurses who attended a workshop on oral complications held before the 2005 ONS Congress

N=74 (individual questions may be less due to missing data)

Questionnaire items and possible responses

Frequencies and percentages

Question 1. Which group of patients would you expect to have the most severe levels of oral mucositis?

n=74

 A. Hematopoietic stem cell transplant

29/39%

 B. Standard outpatient chemotherapy

0

 C. Radiation therapy for head and neck cancer

32/43%

 D. All groups would be expected to have the same levels.

13/18%

Question 2. Oral mucositis may lead to life-threatening and expensive complications.

n=73

 A. Always

24/33%

 B. Sometimes

48/66%

 C. Rarely

1/1%

 D. Never

0

Question 3. Oral mucositis is an expected side effect that is usually nothing to worry about.

n=54

 A. Always

8/15%

 B. Sometimes

10/19%

 C. Rarely

4/7%

 D. Never

32/59%

Question 4. Oral mucositis can be a dose-limiting side effect that may prevent delivery of optimal cancer treatment.

n=68

 A. Always

13/19%

 B. Sometimes

50/74%

 C. Rarely

1/1%

 D. Never

4/6%

Question 5. What is your opinion on whether cancer patients should see a dentist before starting their cancer treatment?

n=66

 A. It does not matter if they see a dentist.

2/3%

 B. Patients should be able to choose.

3/5%

 C. It definitely makes a difference.

41/62%

 D. It depends on the treatment regimen or protocol.

20/30%

Question 6. How often should mouth assessment be done during muco-toxic cancer treatment?

n=67

 A. Once a day

42/63%

 B. After each meal

22/33%

 C. Only when there are problems such as dryness or soreness

2/3%

 D. Assessment is not that important.

1/1%

Question 7. Who provides information about mucositis to patients where you practice?

n=68

 A. The nurse

67/99%

 B. The oncologist

0

 C. Family and/or friends

0

 D. No one

1/1%

Question 8. The Multinational Association for Supportive Care in Cancer (MASCC) recently published evidence-based clinical practice guidelines for managing mucositis. Which of the following best describes your experience with these guidelines?

n=60

 A. I have never heard of the guidelines.

37/62%

 B. I have heard of the guidelines but have not tried to use them.

14/23%

 C. I have considered using these guidelines.

5/8%

 D. I have used these guidelines in my practice.

4/7%

Question 9. If you have tried to use the MASCC guidelines in your practice, which statement best describes your experience?

n=9

 A. The guidelines were clear, relevant, and useful.

2/22%

 B. Only certain parts of the guidelines were useful.

3/33%

 C. Colleagues were not receptive to the guidelines.

2/22%

 D. My institution was not supportive.

2/22%

Question 10. What is your opinion about having patient educational materials based on the MASCC guidelines?

n=73

 A. I feel strongly that they are needed and would use them.

48/66%

 B. I might use them if a patient had a problem with mucositis.

21/29%

 C. There are already enough patient education materials on mucositis.

0

 D. I do not feel strongly one way or the other.

4/5%

Table 3

Responses of 29 health care professionals who visited the scientific information section of a pharmaceutical firm’s website while attending the 2005 ONS Congress or the 2005 ASCO meeting

N=29 (individual questions may be less due to missing data)

Questionnaire items and possible responses

Frequencies and percentages

Question 1. Which group of patients would you expect to have the most severe levels of oral mucositis?

n=29

 A. Hematopoietic stem cell transplant

12/41%

 B. Standard outpatient chemotherapy

1/3%

 C. Radiation therapy for head and neck cancer

14/48%

 D. All groups would be expected to have the same levels.

2/7%

Question 2. Oral mucositis may lead to life-threatening and expensive complications.

n=29

 A. Always

5/17%

 B. Sometimes

19/66%

 C. Rarely

4/14%

 D. Never

1/3%

Question 3. Oral mucositis is an expected side effect that is usually nothing to worry about.

n=29

 A. Always

3/12%

 B. Sometimes

4/15%

 C. Rarely

4/15%

 D. Never

15/58%

Question 4. Oral mucositis can be a dose-limiting side effect that may prevent delivery of optimal cancer treatment.

n=29

 A. Always

7/24%

 B. Sometimes

19/66%

 C. Rarely

2/7%

 D. Never

1/3%

Question 5. What is your opinion on whether cancer patients should see a dentist before starting their cancer treatment?

n=29

 A. It does not matter if they see a dentist.

2/7%

 B. Patients should be able to choose.

3/10%

 C. It definitely makes a difference.

18/62%

 D. It depends on the treatment regimen or protocol.

6/21%

Question 6. How often should mouth assessment be done during muco-toxic cancer treatment?

n=29

 A. Once a day

15/52%

 B. After each meal

8/28%

 C. Only when there are problems such as dryness or soreness

6/21%

 D. Assessment is not that important.

0

Question 7. Who provides information about mucositis to patients where you practice?

n=29

 A. The nurse

28/97%

 B. The oncologist

1/3%

 C. Family and/or friends

0

 D. No one

0

Question 8. The Multinational Association for Supportive Care in Cancer (MASCC) recently published evidence-based clinical practice guidelines for managing mucositis. Which of the following best describes your experience with these guidelines?

n=29

 A. I have never heard of the guidelines.

19/66%

 B. I have heard of the guidelines but have not tried to use them.

5/17%

 C. I have considered using these guidelines.

3/10%

 D. I have used these guidelines in my practice.

2/7%

Question 9. If you have tried to use the MASCC guidelines in your practice, which statement best describes your experience?

n=29

 A. The guidelines were clear, relevant, and useful.

4/14%

 B. Only certain parts of the guidelines were useful.

2/7%

 C. Colleagues were not receptive to the guidelines.

15/52%

 D. My institution was not supportive.

0

 E. Other responses written in by respondents

8/28%

Question 10. What is your opinion about having patient educational materials based on the MASCC guidelines?

n=29

 A. I feel strongly that they are needed and would use them.

21/72%

 B. I might use them if a patient had a problem with mucositis.

3/10%

 C. There are already enough patient education materials on mucositis.

0

 D. I do not feel strongly one way or the other.

1/3%

 E. Other responses written in by respondents

4/14%

Cancer health care professionals who participated in the survey included both non-members and members of MASCC/ISOO. Through collaborations with professional organizations and a pharmaceutical firm, the authors identified three target groups that would be able to complete the survey in April and May of 2005. The reason for this timeframe was to enable the presentation of the results at a session on the updated guidelines at the MASCC/ISOO scientific meeting in Geneva in early summer of 2005 [9].

Integration of the survey into ongoing educational activities resulted in three initial convenience samples which all completed the survey between April and May 2005: (1) 378 nurses who attended a satellite symposium on supportive care held during the Oncology Nursing Society (ONS) Annual Congress in Orlando, FL, USA; (2) 74 nurses who attended a workshop on oral complications held just before the same Congress; and (3) 29 nurses and physicians who visited the scientific information section of a pharmaceutical firm’s website while attending the ONS Congress or the American Society of Clinical Oncology annual meeting, also held in Orlando, FL, USA.

The first two samples completed a paper-and-pencil format and the third sample completed a web-based format. Because of the nature of the data collection methods, it was not possible to collect demographic and other characteristics of respondents. At the 2005 MASCC/ISOO meeting held in Geneva in late June and early July, the authors recruited a fourth convenience sample of 30 mixed health professionals who were attending the meeting, using a revised paper-and-pencil format (Please see Table 4, and below for details). Data from each of the four surveys were then compiled and analyzed using frequencies and percentages. The results are presented below, followed by discussion of implications for future activities to promulgate the updated guidelines.

Results

Oncology nurses (378) attending a satellite symposium on supportive care at the 2005 ONS Congress (Table 1)

Most of these respondents (79.95%) believed that patients having radiation therapy to the head and neck were most at risk for severe mucositis. The majority of them said that oral mucositis always (22%) or sometimes (74%) led to life-threatening complications, that mucositis was something to worry about (67%), and that it was always (26%) or sometimes (65%) a dose-limiting side effect. A significant majority (78%) endorsed the importance of dental care before therapy, although some (20%) said it depended on the treatment regimen. Nearly all respondents indicated that regular assessment was important, either once daily (58%) or after meals (40%). In their work settings, nurses most frequently (97%) gave patients information about mucositis. There were 68% who reported they had unfortunately never heard of the 2004 guidelines. Of the 57 nurses who had tried to use the guidelines, 65% found them useful or partially useful. It is important to note, however, that 82% felt strongly that patient educational materials based on the guidelines were needed and said they would use them.

Oncology nurses (74) attending a workshop on oral complications at the 2005 ONS Congress (Table 2)

These respondents diverged in their beliefs about patients at highest risk of severe mucositis, with 39% indicating hematopoietic stem cell transplant (HSCT) and 43% indicating head and neck radiation. It is important to note here that the workshop was aimed primarily at nurses in the transplant setting. Most of the respondents indicated that mucositis was always (33%) or sometimes (66%) life-threatening, that it was something to be worried about (59%), and that it was always (19%) or sometimes (74%) dose limiting. Most (62%) felt that dental care before treatment made a difference, but 30% said it depended on the treatment regimen. Nearly all endorsed regular oral assessment, either daily (63%) or after meals (33%). In their settings, they reported that nurses (99%) were the health care professionals who most frequently provided information about mucositis to patients. As with the prior sample, two thirds (62%) of respondents had never heard of the MASCC/ISOO guidelines. Of the nine nurses who had used the guidelines, their experiences were variable, and only 33% found them partially useful. Finally, 66% of respondents felt strongly that patient educational materials based on the guidelines were needed and indicated they would use them, and 29% said they might use them if a patient had a problem with mucositis.

Cancer health professionals (29) visiting the scientific website of a pharmaceutical company (Table 3)

This sample was a mix of nurses and physicians attending oncology conferences held in the US (see above). They indicated that either HSCT (41%) or head and neck radiation (48%) patients were at most risk for severe mucositis. They responded that mucositis always (17%) or sometimes (66%) led to life-threatening complications, was something to worry about (58%), and was always (24%) or sometimes (66%) dose limiting. Two thirds (62%) said that dental care before treatment made a difference, and 21% said it depended on the treatment regimen. In contrast to the two previous samples, this group had different opinions about oral assessment, with 52% saying it should be done daily, 28% after meals, and 21% only when there were problems. However, nurses (97%) most often similarly provided information about mucositis to patients. Two thirds (66%) of respondents had never heard of the guidelines. Of those who had actually used the guidelines in practice, 52% reported that colleagues were not receptive. Finally, most (72%) agreed that educational materials were needed and would use them or might use them in a patient with mucositis (10%).

Cancer health professionals (30) attending the 2005 MASCC/ISOO meeting (Table 4)

It is important to note that several questions were revised on the survey questionnaire before distribution to this fourth sample (see Table 4). The reason was that input from the prior samples suggested that: (1) wording of some questions was awkward, (2) some response options were not optimal, and (3) response choices for some questions did not give enough options (e.g., ‘other, please describe...’). In making minor wording changes, however, the meaning and intent of each question remained the same as in previous surveys to facilitate comparison across samples.
Table 4

Responses from 30 health professionals attending the 2005 MASCC/ISOO meeting

N=30 (individual questions may be less due to missing data)

Questionnaire items and possible responses

Frequencies and percentages

Question 1. Which group of patients would you expect to have the most severe levels of oral mucositis?

n=30

 A. Hematopoietic stem cell transplant

13/43%

 B. Standard outpatient chemotherapy

0

 C. Radiation therapy for head and neck cancer

15/50%

 D. All groups would be expected to have the same levels.

2/7%

Question 2. Oral mucositis may lead to life-threatening and expensive complications.

n=30

 A. Always

5/17%

 B. Sometimes

23/77%

 C. Rarely

2/7%

 D. Never

0

Question 3. Oral mucositis is an expected side effect that is usually nothing to worry about.a

n=30

 A. Strongly agree

0

 B. Agree

0

 C. Neither agree nor disagree

0

 D. Disagree

5/17%

 E. Strongly disagree

25/83%

Question 4. Oral mucositis can be a dose-limiting side effect that may prevent delivery of optimal cancer treatmenta

n=29

 A. Strongly agree

23/79%

 B. Agree

6/21%

 C. Neither agree nor disagree

0

 D. Disagree

0

 E. Strongly disagree

0

Question 5. What is your opinion on whether cancer patients should see a dentist before starting their cancer treatment?

n=30

 A. It does not matter if they see a dentist.

0

 B. Patients should be able to choose.

2/7%

 C. It definitely makes a difference.

15/50%

 D. It depends on the treatment regimen or protocol.

13/43%

Question 6. How often should mouth assessment be done during muco-toxic cancer treatment?

n=29

 A. Once a day

23/79%

 B. After each meal

5/17%

 C. Only when there are problems such as dryness or soreness

1/3%

 D. Assessment is not that important.

0

Question 7. Who provides information about mucositis to patients where you practice?a

n=30

 A. The nurse

24/80%

 B. The oncologist

5/17%

 C. Family and/or friends

0

 D. Other, please specify:_______________

1/3%

 E. No one

0

Question 8. The Multinational Association for Supportive Care in Cancer (MASCC) recently published evidence-based clinical practice guidelines for managing mucositis. Which of the following best describes your experience with these guidelines?

n=30

 A. I have never heard of the guidelines.

6/20%

 B. I have heard of the guidelines but have not tried to use them.

7/23%

 C. I have considered using these guidelines.

7/23%

 D. I have used these guidelines in my practice.

10/33%

Question 9. If you have tried to use the MASCC guidelines in your practice, which statement best describes your experience?a

n=15

 A. The guidelines were clear, relevant, and useful.

3/21%

 B. Only certain parts of the guidelines were useful.

5/36%

 C. Colleagues were not receptive to the guidelines.

4/29%

 D. My institution was not supportive.

1/7%

 E. Other, please describe:________________________

1/7%

Question 10. What is your opinion about having patient educational materials based on the MASCC guidelines?a

n=29

 A. I feel strongly that they are needed and would use them.

27/93%

 B. I might use them if a patient had a problem with mucositis.

2/7%

 C. There are already enough patient education materials on mucositis.

0

 D. I do not feel strongly one way or the other.

0

aThese questions were modified slightly from the original survey questions because of input during those surveys

This sample was a mixed group of cancer professionals, thus, their response to patients at risk of most severe mucositis included HSCT (43%) and head and neck radiation (50%). They reported that mucositis always (17%) or sometimes (77%) led to life-threatening complications, was something to worry about (100%), and was dose limiting (100%). Only 50% felt that pre-treatment dental care made a difference (50%), with many (43%) indicating it depended on the treatment regimen. A large majority (79%) endorsed daily oral assessment, with most of the remainder (17%) saying it should occur after meals. Although a majority (80%) indicated that nurses provided information about mucositis to patients, oncologists were also involved (17%), along with other groups such as dental professionals and pharmacists. Because the respondents were members of MASCC/ISOO, as might be expected, most of them had heard of the MASCC/ISOO guidelines, with only 20% indicating they have NOT heard of them. Of the 15 respondents who reported of trying to use the guidelines in practice, about a third (36%) found them partially useful and about a third (29%) found that colleagues were not receptive. Finally, the vast majority (93%) felt strongly that patient educational materials were needed and they would use them, and 7% indicated they might use them if a patient had a problem with mucositis.

Summary

Across all samples, most cancer health care professionals were relatively knowledgeable about the importance of mucositis as a side effect and its potential for causing life-threatening problems or interfering with cancer treatment. Most similarly indicated that regular oral assessment was important, although 21% of sample 3 felt it was necessary only when there was a problem. Also across all samples, respondents appeared to feel that pre-treatment dental care could usually make a difference although, in each sample, a certain proportion indicated that it was regimen dependent. In general, nurses are the most common group of health care professionals providing mucositis-related information to patients, although MASCC/ISOO respondents indicated other groups as well. This finding might also reflect the fact that most of the US samples were comprised of oncology nurses. Awareness of the 2004 guidelines in the US samples was unfortunately quite limited (approximately one third in each sample), but as might be expected, professionals attending the MASCC/ISOO conference were more aware of and had attempted to a greater extent to use the guidelines in practice, probably because they were MASCC/ISOO members. A substantial proportion of respondents in all four samples very importantly felt strongly that patient educational materials based on the guidelines were needed and indicated that they would use them. Taken together, these results suggest that the Mucositis and Patient and Professional Education Study Groups have a considerable amount of work yet to accomplish to promulgate the updated 2006 guidelines. In particular, attention needs to be paid to interdisciplinary promulgation and education, reflecting the philosophy and focus of MASCC/ISOO.

Discussion and conclusions

Health care professionals’ use of new information on oral mucositis depends on many factors, including awareness, access, understanding, usefulness, fit with the practice setting, support of colleagues and administration, and resources [8, 10]. Not only do the results of these surveys indicate a need to more effectively disseminate the updated guidelines but they also indicate that cancer health care professionals perceive a need for patient educational materials related to the guidelines. Before the ultimate goal of improving patient outcomes in the clinical setting can be achieved, substantial work is needed to: (1) disseminate the guidelines more widely and make them accessible to cancer health care professionals who need them; (2) increase their awareness of the guidelines; (3) promote and enhance use of the guidelines and positive clinical outcomes; and 4) develop patient educational materials that are based on the guidelines, are readable, are sensitive to health literacy levels of the general population, and can be used by a variety of cancer providers [5]. The strategies to achieve each of these goals are discussed below.

Strategies to promote dissemination and accessibility

Dissemination of the updated 2006 guidelines for managing mucositis will require a four-pronged approach: (1) within MASCC/ISOO using the website, publications, and annual meetings; (2) in the professional literature through selected journals such as Cancer and Supportive Care in Cancer; (3) to other professional organizations (European Society of Medical Oncology, American Society of Clinical Oncology, International Society of Nurses in Cancer Care, European Oncology Nursing Society, and Oncology Nursing Society) through selected presentations at their conferences and publications in their materials; and (4) in a variety of evidence-based websites (National Comprehensive Cancer Network, Agency for Healthcare Policy and Research, Joanna Briggs Institute, Oncology Nursing Society, etc.) supported by nursing, medicine, and supportive care organizations, governments, foundations, and others. This four-pronged approach will need a careful planning process, with specific individuals or groups designated to work with various organizations.

Strategies to promote awareness

Dissemination ideally leads to awareness, thus, partnerships with various cancer-related organizations will be necessary to achieve targeted presentations to other professional groups and conferences, as well as promotion of the guidelines on websites, in newsletters, and so on. These targeted presentations should focus on the benefits of evidence-based practice and the contribution of the guidelines to such practice. In addition, Mucositis and Patient and Professional Education Study Group members need to integrate the updated guidelines into their own individual practice, teaching, lecturing, and consulting activities [5]. Finally, in addition to publication in traditional media such as professional journals, use of other media formats such as DVDs should be considered. These various strategies should enhance awareness of the guidelines, particularly if they are undertaken in a planned sequence and in specific groups of professionals, and if they clearly demonstrate how the guidelines can be incorporated into practice and what impact they may have on clinical outcomes.

Strategies to promote use and enhance outcomes

Because it is not enough to simply disseminate the updated guidelines and thereby improve awareness, additional strategies are needed to promote their appropriate use in clinical settings. Several strategies may be helpful in this regard. First, some of the manuscripts related to the guidelines (see other Mucositis Study Group papers in this supplement) include case studies to exemplify the application of some of the guidelines’ recommendations. Second, new articles that demonstrate the application of the guidelines by specific disciplines (i.e., nursing, medicine, and dentistry) need to be published in the journals of those disciplines. These articles and other materials could serve as what the American Society of Clinical Oncology (ASCO) calls ‘derivative products’ of its clinical practice guidelines [1] and assist in bringing the guidelines to the clinic. Third, groups of committed health professionals can collaboratively design implementation methods that will help overcome resistance from colleagues and/or institutions to more effectively incorporate the guidelines into practice. Fourth, similar collaborating groups, including members of the two MASCC/ISOO study groups, need to develop and test models to implement the guidelines in selected settings and evaluate relevant outcomes, perhaps with the help of grant funding from government or private agencies. Because the MASCC/ISOO Mucositis Study Group is the only group to date which has developed mucositis-specific evidence-based management guidelines, it finally needs to develop and implement methodology to measure outcomes over time that are attributable to the original guidelines and/or update guidelines. This methodology would enable a longitudinal examination of ‘durable impact on practice’.

Strategies to enhance education of patients

The survey data clearly bear out that the guidelines can serve as a basis for educating patients and their families about prevention and treatment of mucositis. The Geneva presentation mentioned earlier [9] and other sources [2, 4, 5] delineate important considerations in developing educational strategies. For example, the following questions must be considered: (1) Can patients understand the importance of oral care when they are already inundated with diagnosis- and treatment-related information? (2) Are there teaching strategies that will help patients remember the steps in good oral care? (3) How can health care professionals create materials that are understandable? (4) If such materials are available, will they be used? 5) (Will educating patients about mucositis make an impact on incidence and/or severity?

Newly diagnosed patients are estimated to retain less than 20% of the information that is given to them [14]; therefore, it is essential to develop strategies that help them remember more than 20% of the information provided. In general, people remember 20% of what they hear, 30% of what they see, 50% of what they hear AND see, 70% of what they hear, see, and say, and 90% of what they hear, see, say, and do [2]. Using a variety of teaching strategies will be more effective than simply providing verbal or written information. For example, to teach about daily oral care, the health care professional can use pictures, printed materials, videotapes, and samples of oral care products. Performing an oral assessment demonstrates to the patient how it is done, and encouraging questions will enhance understanding. Having patients demonstrate how they floss and/or brush their teeth and examining their mouths provide an opportunity for the health care professional to affirm their competence and correct suboptimal technique. The reinforcement that occurs when using these strategies will enhance learning.

Several basic rules are helpful for patient teaching. First, make the teaching session short, as the average adult remembers only five to seven points of information and remembers even less under stress. Second, make the teaching specific, giving only what is most important. Third, make the teaching simple, avoiding medical terminology. Consistent use of these rules will aid in patients’ understanding and remembering what they are taught.

In addition, it is important to make teaching materials understandable to patients. The concept of ‘patient literacy’ in relation to health information is important, as it is a set of skills needed to read, understand, and act on health care information [4]. The language used by health care professionals is not a ‘language’ spoken by patients until they are sick. Thus, people’s level of education does not accurately reflect their understanding (‘literacy’) of health information. Moreover, for individuals who have limited ability to read and understand any information (i.e., who are illiterate), health care professionals must design education materials that are appropriate [6]. Recommendations to improve readability and understanding include the following. First, use short familiar words of one or two syllables, for example, ‘mouth sores’ instead of ‘oral mucositis’. Second, avoid medical terminology if possible, for example, ‘after surgery’ instead of ‘post-operative’. Third, use active voice in the present tense, for example, ‘Brush your teeth after every meal’ instead of ‘Your teeth should be brushed after every meal.’ Finally, use short sentences of 15 words or less and short paragraphs of ten lines or less.

Finally, an interdisciplinary team approach to patient education is optimal as it ensures that relevant and comprehensive information is included in the teaching [5]. Although most of the survey respondents were nurses, patient educational materials based on the guidelines will be helpful for other cancer health care professionals. In summary, to effectively teach patients and families about prevention and management of mucositis, health care professionals need to: (1) use a variety of teaching strategies, (2) develop understandable educational materials, (3) have the expectation that patients are capable of self care, and (4) believe that educating patients about mucositis can make a difference in outcomes.

Conclusion

Awareness of the 2004 guidelines has been less than optimal, and the MASCC/ISOO Mucositis and Patient and Professional Education Study Groups need to be highly proactive in disseminating the updated guidelines and enhancing health care professionals’ awareness of them. Targeted efforts are needed for reaching oncology nurses, radiotherapists, medical oncologist, dentists, and other relevant groups. Understandable educational materials are needed for patients and families and will be a focus of future work. Carefully designed plans for dissemination, promulgation, and evaluation of outcomes attributable to the updated guidelines are essential. Initial steps will focus on professional and patient/family educational initiatives, with the ultimate step being evaluation of outcomes and improvement in patient care and quality of life during treatment.

Acknowledgements

The authors thank Dana Barkley of Oncology Educational Services; Carl Brown of the University of Utah College of Nursing; Debbie Kurtz of Business Services International, Inc.; and Jason Spitz of MGI Pharma for their assistance in distributing the survey to the individuals in the four samples and collecting the completed surveys. They also thank W. Cameron McGuire of Trinity College, Hartford, CT, for data entry and analysis, and for preparation of tabular materials.

Copyright information

© Springer-Verlag 2006