Original Article
Connected Health: Cancer Symptom and Quality-of-Life Assessment Using a Tablet Computer: A Pilot Study
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(2) 189-197 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113510963 ajhpm.sagepub.com
Aynur Aktas, MD1,2, Barbara Hullihen, BS1,2, Shiva Shrotriya, MD1,2, Shirley Thomas, MD1,2, Declan Walsh, MSc, FACP, FRCP (Edin)1,2,3, and Bassam Estfan, MD1
Abstract Incorporation of tablet computers (TCs) into patient assessment may facilitate safe and secure data collection. We evaluated the usefulness and acceptability of a TC as an electronic self-report symptom assessment instrument. Research Electronic Data Capture Web-based application supported data capture. Information was collected and disseminated in real time and a structured format. Completed questionnaires were printed and given to the physician before the patient visit. Most participants completed the survey without assistance. Completion rate was 100%. The median global quality of life was high for all. More than half reported pain. Based on Edmonton Symptom Assessment System, the top 3 most common symptoms were tiredness, anxiety, and decreased well-being. Patient and physician acceptability for these quick and useful TC-based surveys was excellent. Keywords cancer, connected health, patient reported outcomes, quality of life, symptoms, tablet computer
Introduction Integration of electronic health information offers hospitals both benefits and challenges.1 Only 2% of the US hospitals have comprehensive electronic health information systems; 8% to 12% use a basic electronic medical record (EMR).1 Incorporation of portable electronic devices (tablet computers [TCs]) into patient assessment has some advantages: safe and secure data collection, ease of use, and perhaps less resource burden. Computer-based data collection has less patient recall difficulties and errors.2 Output from self-reported questionnaires can be stored directly in electronic databases. Information can readily be retrieved for audit and research.3 Challenges include effective design of online questionnaires, data capture via secure wireless networks, and data security.4 Tablet computer is a generic term for personal computers with a special operating system for touch interfaces. Our objectives were to evaluate the usefulness and acceptability of a TC as an electronic self-report symptom assessment instrument. The goals were to develop methodology for a larger study and to examine the practicality of a TC in a busy oncology clinic. We also assessed acceptability of the TC and the online survey for patients and their physician. In this pilot study, we measured patient reported outcomes (PROs) using a TC in an oncology outpatient clinic. Patient reported outcomes consist of data gathered directly from patients, symptoms, functional impairment, health-related quality of life (HRQoL), and quality
of life (QoL).5 We collected multiple PROs (common cancer symptoms and HRQoL measures) in outpatients with solid tumors at their first visit to the Cleveland Clinic Taussig Cancer Institute (TCI). This article reports the methodology employed in this novel approach to assessment of patients with cancer.
Methods Patients This pilot study was conducted in a tertiary care academic medical center cancer outpatient clinic. The TCI sees over 6000 new patients with cancer per year. The use and practicality of a TC were first informally explored in 10 patients admitted 1
Department of Solid Tumor Oncology, Taussig Cancer Institute, Cleveland Clinic, Cleveland, Ohio, USA 2 The Harry R. Horvitz Center for Palliative Medicine, Cleveland Clinic, Cleveland, Ohio, USA 3 Faculty of Health Sciences, Trinity College Dublin and University College Dublin, First Floor, Old Chemistry Building Extension, Trinity College, Dublin 2, Ireland Corresponding Author: Declan Walsh, MSc, FACP, FRCP (Edin), Department of Solid Tumor Oncology, Taussig Cancer Institute, M-77, Cleveland Clinic, 9500 Euclid Avenue, Cleveland OH 44195, USA. Email: [email protected]
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190 to an acute care palliative medicine inpatient unit. That prepilot evaluation was conducted in June 2012 and provided valuable initial information. For this report, screening for the pilot study was performed in Epic Systems Corporation (EPIC), an EMRs software, to identify possible eligible outpatients. All patients were recruited consecutively from a single medical oncologist physician appointment schedule in August 2012. Inclusion criteria were: 1. 2. 3. 4.
cancer diagnosis documented by the physician; aged 18 years; first clinic appointment with the oncologist; willingness to participate in the study.
The exclusion criteria were: 1. 2. 3. 4.
follow-up visits; second opinion visits; appointment for chemotherapy or blood transfusion; inability to complete questionnaires due to language problems or obvious cognitive impairment.
plastic bag (Web Zip, Capitol Container Inc, Montgomery, Alabama) that is discarded after each patient. The iPad stylus was sanitized by a 70/30 isopropyl alcohol sterile disposable wipe (Webcol, Covidien, Mansfield, Massachusetts) before each interview. To ensure confidentiality, questionnaires were administered in a quiet part of outpatient waiting area or in a separate private room for the convenience of the patient. Questionnaires appeared on to the TC screen with the entry of a unique individual study identification number. Survey questions were answered by ticks for the appropriate answer on screen check boxes; 1 required free text. A TC prompt notified participants if a question was missed; they could continue and omit any question if they wished. The screen could zoom in for visual clarity. Assistance could be provided by family members, care givers, or the research physician. Once completed a TC prompt encouraged participants to save their responses. Survey responses were then stored in the REDCap. Research Electronic Data Capture also automatically tracked completion time and duration in minutes.
Design
Data Collection
This was a nonrandomized, single arm study conducted in the Solid Tumor Oncology Clinic of the Cleveland Clinic TCI. A waiver of written informed consent was approved by the Cleveland Clinic Institutional Review Board as there were limited patient identifiers (ie, year of birth and initials) in the data collection. Eligible patients received a letter with study information more than 5 days in advance of their first appointment. The day before that a telephone call by a research physician ensured they had received the letter. A series of scripted statements outlined the pilot study, name of primary investigator, appointment time and location, and the use of the TC (Appendix A). Those who then agreed to participate were invited to meet a research physician 20 minutes before their scheduled check-in time on the appointment day.
The questionnaires were adapted from an international multicenter data collection project (The European Palliative Care Research Collaborative-Computerized Symptom Assessment; EPCRC-CCA; Appendix B).7 They were used with permission from the European Association for Palliative Care Research Network. Questionnaires in total contained 40 questions; demographic information (N ¼ 5), symptoms (N ¼ 17), and HRQoL (N ¼ 17) assessment. The final question identified whether assistance was provided. Survey questions (Appendix B) encompassed 5 symptom assessment categories: pain classification, depression, food intake, Edmonton Symptom Assessment System-revised (ESAS-r), and HRQoL. Pain classification included (1) pain intensity (worst and average pain in the last 24 hours), (2) neuropathic pain, and (3) breakthrough pain. The ESAS-r has 9 core symptoms list plus an open-ended one to volunteer symptoms not already included. All ESAS-r were scored on an 11point numerical rating scale (NRS; 0, not at all; 10, worst possible).8 Health-related quality of life was measured by the European Organization for the Research and Treatment of Cancer Core Quality of Life Questionnaire for Palliative Care (EORTC QLQ-C15-PAL).9 It includes 2 functional scales (physical and emotional), 2 symptom scales (fatigue and pain), 5 single symptom items (dyspnea, insomnia, appetite loss, nausea, and constipation), and 1 global QoL item. To examine depression, it was supplemented by 2 additional items (worry and feel irritable) from the EORTC QLQ-C30.10 Symptoms and global QoL were measured by an 11-point NRS. Health-related quality of life items were scored on a 4 point-categorical scale ‘‘over the past week.’’ Completed questionnaires were printed immediately. Symptoms were considered clinically significant if rated 4 on the NRS; similarly,
Procedures Taussig Cancer Institute established a secure iPad (Apple Inc, Cupertino, California) compatible wireless network for electronic research data capture with no public access. Cleveland Clinic is part of the Research Electronic Data Capture (REDCap; Vanderbilt University, Nashville, Tennessee) database consortium.6 Research Electronic Data Capture is a secure, Web-based application designed to support research projects. Security is assured by user authentication, role-based access privileges, and central data storage. It is important to note that with appropriate information technology expertise, other institutions can also use REDCap for research. We used a third generation iPad TC for this study. A research physician presented the TC to each patient with a short demonstration prior to actual data entry. These included the use of a touch-screen and a stylus pen (Belkin, Playa Vista, California). The TC was presented within a sealed disposable
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Table 1. Demographic Information.a Variable Age Mean (+SD) Median (range) Gender, N (%) Male Female Present marital status, N (%) Single Widowed Divorced or separated Married or cohabitating Education, N (%) 9 years of school or less 10-12 years of school College or university (4 years) College or university (>4 years) Living situation, N (%) Alone With spouse or partner With spouse/partner and children With children In an institution
Statistic
Table 2. Symptom Assessment by Edmonton Symptom Assessment System. Prevalence
Clinically significant
Symptom
N (%)a
N (%)b
Median (range)
Mean (+SD)
Tiredness Anxiety Feel overall Drowsiness Lack of appetite Other Shortness of breath Depression Pain Nausea
9 (82) 7 (64) 7 (64) 5 (45) 5 (45) 5 (45) 4 (36) 4 (36) 4 (36) 1 (9)
4 (44) 2 (26) 3 (43) 3 (60) 3 (60) 0 (0) 2 (50) 3 (75) 3 (75) 0 (0)
3 1 1 0 0 3 0 0 0 0
3.3 2.1 2.5 2.2 1.8 4 1.3 2 1.8 0.1
67 (9) 66 (54, 85) 6 (55) 5 (45) 0 2 2 7
(0) (18) (18) (64)
0 5 4 2
(0) (45) (36) (18)
0 8 0 3 0
(0) (73) (0) (27) (0)
Abbreviation: SD, standard deviation. a N ¼ 11.
HRQoL items were deemed clinically significant if rated ‘‘quite a bit’’ or ‘‘very much’’ as were symptoms present more than half of the days in a week. Clinically significant survey responses were marked with a highlighter pen by the research physician and given by hand to the medical oncologist immediately before the patient visit.
Statistical Analysis Continuous variables were summarized as the median and range, mean and standard deviation, and categorical variables as percentages. All percentages were rounded to the nearest whole number. Data were downloaded from REDCap to Microsoft Excel (2003, Microsoft, Redmond, Washington). It was analyzed with JMP (Version 9, SAS Institute Inc, Cary, North Carolina).
Results A total of 20 consecutive patients were screened in EPIC. The letter went to 16 patients by mail. It was not sent to 4 patients; 3 patients were 0 on a NRS-11. b Symptoms that were scored 4 on a NRS-11.
Of the 11 surveyed, 6 had pain. Among them, 2 had breakthrough and 1 had neuropathic pain. Average pain and worst pain severity in the last 24 hours were 4 and 8 in 4 participants, respectively. Signs of depression were evident in 2; participants felt little interest or pleasure in doing things and depressed or hopeless nearly every day. They also reported their food intake was less than usual during the past month. Among the ESAS symptoms, most had tiredness (9 of 11), anxiety, and decreased well-being (7 of 11). Next were drowsiness and anorexia (5 of 11), pain, shortness of breath, and depression (4 of 11; Table 2). Five reported other symptoms that were not in the survey questions; chest pain/discomfort (n ¼ 2), constipation (n ¼ 1), vomiting (n ¼ 1), and bleeding (n ¼ 1). Clinically significant anorexia, depression, drowsiness, and pain were present in 3 patients (Table 2). The median score for global QoL was 5 (range 1, 6). Symptom severity from EORTC QLQ-C15PAL is given in Table 3. Weakness was present in 8 patients and pain and trouble sleeping in 7 patients (Table 3). Of the 7 patients, 4 had clinically significant pain. All those who started the TC process completed the survey. All survey questions were answered. Of the 11 patients, 7 completed it unassisted. The mean (SD) time to complete the survey was 11 (+5) minutes.
Discussion A thorough pilot study is essential to evaluate the feasibility and to enhance study design prior to any research project.11 This pilot study was a detailed feasibility study from 3 perspectives: 1.
2. 3.
the perceived practicality and acceptance by patients and a physician of TC as an electronic self-report symptom assessment instrument completion rate completion time
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192 Table 3. Health-Related Quality of Life Assessment by EORTC QLQC15-PAL. Item (past wk) Ability to take a short walk Bed or chair bound Ability to eat and dress and toilet and wash Short of breath Pain Trouble sleeping Weakness Lack of appetite Nausea Constipation Tiredness Pain interfere with activities Tense Depression Worry Irritable
Not at all and a little, N
Quite a bit and very much, N
9 10 11
2 1 0
9 7 9 8 9 10 10 8 8 10 10 10 9
2 4 2 3 2 1 1 3 3 1 1 1 2
Abbreviations: EORTC QLQ-C15-PAL, European Organization for the Research and Treatment of Cancer Core Quality of Life Questionnaire for Palliative Care; wk, week.
To our knowledge, this is the first study to measure PROs using a TC with direct data transfer to a secure database. The results were provided to the physician prior to the scheduled appointment to facilitate structured symptom assessment. We did a comprehensive symptom and HRQoL assessment at first visit. Although we invited patients to arrive prior to their appointment, many were already in the outpatient waiting area for several reasons. Some travel great distances. Others were at the cancer center before hand for other procedures related to their initial encounter (eg, laboratory work and imaging). The mean completion time was 11 minutes which is rapid for a 40-item questionnaire. There was no delay in appointment times. This implied that clinic waiting time can be effectively utilized for this type of data collection. The high-completion rate and lack of assistance were likely influenced by a high-education level among participants. There were several requests for explanation of the terms and the use of scales in the ESAS. Some participants had issues with double negatives (eg, lack of appetite) in some survey questions’ wording. Likewise, concern arose if the same question was asked in different time frames (eg, now, last 24 hours, and last week). Others felt that the same symptom (eg, depression) asked repeatedly but in different ways was burdensome. Our sample was characterized by a high-symptom burden. Almost half of the participants reported other symptoms that were not in ESAS. These findings show the need for a comprehensive symptom list. The use of the REDCap for data acquisition and storage offered several benefits compared to pen and paper. A major advantage was the direct access to REDCap via secure wireless Internet connection. No additional software installation or development was needed. In addition, REDCap allowed secure Web-based access to authorized users, provided audit trails,
and a deidentified data export mechanism to popular common statistical software programs. Our experience was that PRO electronic data collection systems could be used for research concurrently with clinical practice. The high completion rate (100%) in our pilot study showed that electronic symptom assessment by TC is feasible in people at their first visit to a tertiary academic center. Furthermore, PRO data acquisition by REDCap on an iPad was efficient and practical. Of the 16 patients, 4 who had initially consented to participate either did not show up or canceled their appointment; so the participation rate was 75%. Notably, those who completed the questionnaires reported little difficulty with the TC symptom assessment tool. Most used the TC without assistance perhaps due in part to their general good health status.7 Questions left blank (eg, no answer) were avoided by REDCap error prompts. That way, the patient could verify whether they intentionally wanted to leave the question unanswered. Upon completion of the assessment, a printed report was provided immediately to the physician. The rapid transfer of results helped integrate systematic symptom assessment into the daily operational flow in an oncology clinic. This may also reduce respondent burden by flagging important symptoms and save time.12 The physician involved noted that survey results often identified symptoms that might have been overlooked.13 Tablet computers were perceived as helpful and acceptable by both the patients and the physician. Our findings also support the importance of systematic symptom evaluation to enhance physician–patient communication.14 The use of mobile electronic devices simplifies data acquisition and accelerates information transfer between patients and clinicians.15 A few studies have described TC use to evaluate symptoms in rheumatology16 and oncology.17-20 This is a new area in cancer symptom management research. There is a need to explore useful technologies to help clinical decision making and treatment evaluations. There were limitations to our study. The pilot study had a small sample size which represented data only from outpatients of a single oncologist. Therefore, our findings should not be generalized to other clinical settings. We did not collect some information on, for example, functional status and medication use, which would likely have influenced completion rate and completion time. Future research should: 1. 2. 3.
identify whether data acquisition is influenced by disease or functional status; develop applications to integrate questionnaires into EMRs; and assess user satisfaction.
Conclusions Studies using TC in busy outpatient clinics are practical. Most of those who received information participated. Most completed the survey without assistance. There was a 100% completion rate, and it took on average just over 10 minutes to complete. Clinic wait time can be usefully employed for
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this purpose. Information was collected and disseminated in real time and a structured format. More than half reported pain. The median global QoL was high for all. Based on ESAS, the top 3 most common symptoms were tiredness, anxiety, and decreased well-being. In EORTC QLQ-C-15PAL, the 5 most frequently reported symptoms were weak-
ness, tiredness, pain, trouble sleeping, and anorexia. Almost half reported other symptoms that were not in the questionnaire. The information gathered prior to physician encounter was useful in clinical practice. Patient and physician acceptability for these quick and useful TC-based surveys was excellent.
Appendix A Script for Research Physcian to Inform Patient of Study by Phone
This phone call is a follow up to letter you received previously telling you about our study This will be your first visit to the Taussig Cancer Institute Outpatient Clinic of Dr. B.E. We have a research group that is conducting a pilot study questionnaire with a tablet computer. We would like to ask about your symptoms and well-being before your first visit here. The survey has 40 questions. We will provide your answers to your doctor before he sees you. Would you like to meet with our research group and have them explain the study? You can have help in completing the survey either from your family member, us or whoever is coming with you. Yes, can you come 20 minutes early?
Appendix B Study Questionnaire PATIENT NUMBER: DATE OF REGISTRATION: INITIALS: PATIENT INSTRUCTIONS Thank you for completing this questionnaire to assess your pain and other symptoms. You may complete this on your own or with help from your family or healthcare professionals. You do not need to spend a lot of time on each answer. Please answer each question the best way you can, by selecting the most appropriate alternative, then press the grey box labeled ‘‘Save and Go to the Next Form’’. YEAR OF BIRTH (4 digits, for example 1952): GENDER:
c c
Female Male
PRESENT MARITAL STATUS
c c c c
Single Widowed Divorced/Separated Married/Cohabiting
HIGHEST COMPLETED EDUCATION
c c c c
9 years of schooling or less 10-12 years of schooling College or University: 4 yrs or less College or University: More than 4 yrs
LIVING SITUATION
c c c c c c
Alone With spouse/partner With spouse/partner and children With children With other adult(s) In an institution
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PAIN INTENSITY 1 Please rate your pain by marking the one number that best describes your pain on the average in the last 24 hours. 0: No pain 10: Pain as bad as you can imagine c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 PAIN INTENSITY 2 Please rate your pain by marking the one number that best describes your pain at its worse in the last 24 hours. 0: No pain 10: Pain as bad as you can imagine c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 NEUROPATHIC PAIN This question can tell us about the type of pain that you may be experiencing. This can help in deciding how best to treat it. Does the skin in the painful area feel different from normal; more numb or more sensitive?
c c c
Yes No Not applicable
BREAKTHROUGH PAIN Breakthrough pain can be defined as a brief flare-up of pain. It can be flare-up to the usual, steady pain you always experience (your baseline pain) OR it can be a pain that is different from your baseline pain.
c c
Yes No
DEPRESSION Over the last 2 weeks, how often have you been bothered by: Little interest or pleasure in doing things
c c c c
Not at all Several days More than half the days Nearly every day
DEPRESSION Over the last 2 weeks, how often have you been bothered by: Feeling down, depressed or hopeless
c c c c
Not at all Several days More than half the days Nearly every day
FOOD INTAKE As compared to by normal intake, I would rate my food intake during the past month as:
c c c
Unchanged More than usual Less than usual
PAIN Please mark the number that best describes how you feel NOW. 0: No pain 10: Worse possible pain c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 TIREDNESS Please mark the number that best describes how you feel NOW. 0: No tiredness 10: Worse possible tiredness (TIREDNESS ¼ LACK OF ENERGY) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 DROWSINESS Please mark the number that best describes how you feel NOW. 0: No drowsiness 10: Worse possible drowsiness (DROWSINESS ¼ FEELING SLEEPY) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 NAUSEA Please mark the number that best describes how you feel NOW. 0: No nausea 10: Worse possible nausea c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 APPETITE Please mark the number that best describes how you feel NOW. 0: No lack of appetite 10: Worse possible lack of appetite c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 SHORTNESS OF BREATH Please mark the number that best describes how you feel NOW. 0: No shortness of breath 10: Worse possible shortness of breath c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 DEPRESSION Please mark the number that best describes how you feel NOW. 0: No depression 10: Worse possible depression (DEPRESSION: FEELING SAD) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 ANXIETY Please mark the number that best describes how you feel NOW. 0: No anxiety 10: Worse possible anxiety (ANXIETY ¼ FEELING NERVOUS) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 WELL-BEING Please mark the number that best describes how you feel NOW. 0: Best well-being 10: Worse possible well-being (WELL-BEING ¼ HOW YOU FEEL OVERALL) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10
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OTHER SYMPTOM Do you experience any other symptoms NOW? c Yes c No Please mention the symptom here: _______________ OTHER SYMPTOM Please mark the number that best describes how you feel about the additional symptom NOW. 0: No symptom 10: Worse possible symptom c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 SHORT WALK Do you have any trouble taking a short walk outside of the house?
c c c c
Not at all A little Quite a bit Very much
BED OR CHAIR Do you need to stay in bed or chair during the day?
c c c c
Not at all A little Quite a bit Very much
EATING/DRESSING/WASHING/TOILET Do you need help with eating, washing yourself or using the toilet?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK WERE YOU SHORT OF BREATH?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU HAD PAIN?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU TROUBLE SLEEPING?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU FELT WEAK?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU LACKED APPETITE?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU FELT NAUSEATED?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU FELT CONSTIPATED?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK WERE YOU TIRED?
c c c c
Not at all A little Quite a bit Very much
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DURING THE PAST WEEK DID PAIN INTERFERE WITH YOUR DAILY ACTIVITIES?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU FEEL TENSE?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU FEEL DEPRESSED?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU WORRY?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU FEEL IRRITABLE?
c c c c
Not at all A little Quite a bit Very much
For the following question please mark the number between 1 and 7 that best applies to you. HOW WOULD YOU RATE YOUR OVERALL QUALITY OF LIFE DURING THE PAST WEEK? 1: Very poor 7: Excellent c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 THE FORM WAS COMPLETED/ASSISSTED BY
Acknowledgments The authors would like to thank Millie McKenzie, Carolyn Miclea, Mike Stilgenbauer, and Denise Dawson for their administrative support.
Author’s Note The Harry R. Horvitz Center for Palliative Medicine is a World Health Organization Demonstration Project in Palliative Medicine and is an ESMO Designated Integrated Center of Supportive Oncology and Palliative Care. This study was presented at the Multinational Association of Supportive Care in Cancer (MASCC)/International Society of Oral Oncology (ISOO) Symposium, June 27-29, 2013, Berlin, Germany.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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Connected Health: Cancer Symptom and Quality-of-Life Assessment Using a Tablet Computer: A Pilot Study
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(2) 189-197 ª The Author(s) 2013 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909113510963 ajhpm.sagepub.com
Aynur Aktas, MD1,2, Barbara Hullihen, BS1,2, Shiva Shrotriya, MD1,2, Shirley Thomas, MD1,2, Declan Walsh, MSc, FACP, FRCP (Edin)1,2,3, and Bassam Estfan, MD1
Abstract Incorporation of tablet computers (TCs) into patient assessment may facilitate safe and secure data collection. We evaluated the usefulness and acceptability of a TC as an electronic self-report symptom assessment instrument. Research Electronic Data Capture Web-based application supported data capture. Information was collected and disseminated in real time and a structured format. Completed questionnaires were printed and given to the physician before the patient visit. Most participants completed the survey without assistance. Completion rate was 100%. The median global quality of life was high for all. More than half reported pain. Based on Edmonton Symptom Assessment System, the top 3 most common symptoms were tiredness, anxiety, and decreased well-being. Patient and physician acceptability for these quick and useful TC-based surveys was excellent. Keywords cancer, connected health, patient reported outcomes, quality of life, symptoms, tablet computer
Introduction Integration of electronic health information offers hospitals both benefits and challenges.1 Only 2% of the US hospitals have comprehensive electronic health information systems; 8% to 12% use a basic electronic medical record (EMR).1 Incorporation of portable electronic devices (tablet computers [TCs]) into patient assessment has some advantages: safe and secure data collection, ease of use, and perhaps less resource burden. Computer-based data collection has less patient recall difficulties and errors.2 Output from self-reported questionnaires can be stored directly in electronic databases. Information can readily be retrieved for audit and research.3 Challenges include effective design of online questionnaires, data capture via secure wireless networks, and data security.4 Tablet computer is a generic term for personal computers with a special operating system for touch interfaces. Our objectives were to evaluate the usefulness and acceptability of a TC as an electronic self-report symptom assessment instrument. The goals were to develop methodology for a larger study and to examine the practicality of a TC in a busy oncology clinic. We also assessed acceptability of the TC and the online survey for patients and their physician. In this pilot study, we measured patient reported outcomes (PROs) using a TC in an oncology outpatient clinic. Patient reported outcomes consist of data gathered directly from patients, symptoms, functional impairment, health-related quality of life (HRQoL), and quality
of life (QoL).5 We collected multiple PROs (common cancer symptoms and HRQoL measures) in outpatients with solid tumors at their first visit to the Cleveland Clinic Taussig Cancer Institute (TCI). This article reports the methodology employed in this novel approach to assessment of patients with cancer.
Methods Patients This pilot study was conducted in a tertiary care academic medical center cancer outpatient clinic. The TCI sees over 6000 new patients with cancer per year. The use and practicality of a TC were first informally explored in 10 patients admitted 1
Department of Solid Tumor Oncology, Taussig Cancer Institute, Cleveland Clinic, Cleveland, Ohio, USA 2 The Harry R. Horvitz Center for Palliative Medicine, Cleveland Clinic, Cleveland, Ohio, USA 3 Faculty of Health Sciences, Trinity College Dublin and University College Dublin, First Floor, Old Chemistry Building Extension, Trinity College, Dublin 2, Ireland Corresponding Author: Declan Walsh, MSc, FACP, FRCP (Edin), Department of Solid Tumor Oncology, Taussig Cancer Institute, M-77, Cleveland Clinic, 9500 Euclid Avenue, Cleveland OH 44195, USA. Email: [email protected]
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190 to an acute care palliative medicine inpatient unit. That prepilot evaluation was conducted in June 2012 and provided valuable initial information. For this report, screening for the pilot study was performed in Epic Systems Corporation (EPIC), an EMRs software, to identify possible eligible outpatients. All patients were recruited consecutively from a single medical oncologist physician appointment schedule in August 2012. Inclusion criteria were: 1. 2. 3. 4.
cancer diagnosis documented by the physician; aged 18 years; first clinic appointment with the oncologist; willingness to participate in the study.
The exclusion criteria were: 1. 2. 3. 4.
follow-up visits; second opinion visits; appointment for chemotherapy or blood transfusion; inability to complete questionnaires due to language problems or obvious cognitive impairment.
plastic bag (Web Zip, Capitol Container Inc, Montgomery, Alabama) that is discarded after each patient. The iPad stylus was sanitized by a 70/30 isopropyl alcohol sterile disposable wipe (Webcol, Covidien, Mansfield, Massachusetts) before each interview. To ensure confidentiality, questionnaires were administered in a quiet part of outpatient waiting area or in a separate private room for the convenience of the patient. Questionnaires appeared on to the TC screen with the entry of a unique individual study identification number. Survey questions were answered by ticks for the appropriate answer on screen check boxes; 1 required free text. A TC prompt notified participants if a question was missed; they could continue and omit any question if they wished. The screen could zoom in for visual clarity. Assistance could be provided by family members, care givers, or the research physician. Once completed a TC prompt encouraged participants to save their responses. Survey responses were then stored in the REDCap. Research Electronic Data Capture also automatically tracked completion time and duration in minutes.
Design
Data Collection
This was a nonrandomized, single arm study conducted in the Solid Tumor Oncology Clinic of the Cleveland Clinic TCI. A waiver of written informed consent was approved by the Cleveland Clinic Institutional Review Board as there were limited patient identifiers (ie, year of birth and initials) in the data collection. Eligible patients received a letter with study information more than 5 days in advance of their first appointment. The day before that a telephone call by a research physician ensured they had received the letter. A series of scripted statements outlined the pilot study, name of primary investigator, appointment time and location, and the use of the TC (Appendix A). Those who then agreed to participate were invited to meet a research physician 20 minutes before their scheduled check-in time on the appointment day.
The questionnaires were adapted from an international multicenter data collection project (The European Palliative Care Research Collaborative-Computerized Symptom Assessment; EPCRC-CCA; Appendix B).7 They were used with permission from the European Association for Palliative Care Research Network. Questionnaires in total contained 40 questions; demographic information (N ¼ 5), symptoms (N ¼ 17), and HRQoL (N ¼ 17) assessment. The final question identified whether assistance was provided. Survey questions (Appendix B) encompassed 5 symptom assessment categories: pain classification, depression, food intake, Edmonton Symptom Assessment System-revised (ESAS-r), and HRQoL. Pain classification included (1) pain intensity (worst and average pain in the last 24 hours), (2) neuropathic pain, and (3) breakthrough pain. The ESAS-r has 9 core symptoms list plus an open-ended one to volunteer symptoms not already included. All ESAS-r were scored on an 11point numerical rating scale (NRS; 0, not at all; 10, worst possible).8 Health-related quality of life was measured by the European Organization for the Research and Treatment of Cancer Core Quality of Life Questionnaire for Palliative Care (EORTC QLQ-C15-PAL).9 It includes 2 functional scales (physical and emotional), 2 symptom scales (fatigue and pain), 5 single symptom items (dyspnea, insomnia, appetite loss, nausea, and constipation), and 1 global QoL item. To examine depression, it was supplemented by 2 additional items (worry and feel irritable) from the EORTC QLQ-C30.10 Symptoms and global QoL were measured by an 11-point NRS. Health-related quality of life items were scored on a 4 point-categorical scale ‘‘over the past week.’’ Completed questionnaires were printed immediately. Symptoms were considered clinically significant if rated 4 on the NRS; similarly,
Procedures Taussig Cancer Institute established a secure iPad (Apple Inc, Cupertino, California) compatible wireless network for electronic research data capture with no public access. Cleveland Clinic is part of the Research Electronic Data Capture (REDCap; Vanderbilt University, Nashville, Tennessee) database consortium.6 Research Electronic Data Capture is a secure, Web-based application designed to support research projects. Security is assured by user authentication, role-based access privileges, and central data storage. It is important to note that with appropriate information technology expertise, other institutions can also use REDCap for research. We used a third generation iPad TC for this study. A research physician presented the TC to each patient with a short demonstration prior to actual data entry. These included the use of a touch-screen and a stylus pen (Belkin, Playa Vista, California). The TC was presented within a sealed disposable
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Table 1. Demographic Information.a Variable Age Mean (+SD) Median (range) Gender, N (%) Male Female Present marital status, N (%) Single Widowed Divorced or separated Married or cohabitating Education, N (%) 9 years of school or less 10-12 years of school College or university (4 years) College or university (>4 years) Living situation, N (%) Alone With spouse or partner With spouse/partner and children With children In an institution
Statistic
Table 2. Symptom Assessment by Edmonton Symptom Assessment System. Prevalence
Clinically significant
Symptom
N (%)a
N (%)b
Median (range)
Mean (+SD)
Tiredness Anxiety Feel overall Drowsiness Lack of appetite Other Shortness of breath Depression Pain Nausea
9 (82) 7 (64) 7 (64) 5 (45) 5 (45) 5 (45) 4 (36) 4 (36) 4 (36) 1 (9)
4 (44) 2 (26) 3 (43) 3 (60) 3 (60) 0 (0) 2 (50) 3 (75) 3 (75) 0 (0)
3 1 1 0 0 3 0 0 0 0
3.3 2.1 2.5 2.2 1.8 4 1.3 2 1.8 0.1
67 (9) 66 (54, 85) 6 (55) 5 (45) 0 2 2 7
(0) (18) (18) (64)
0 5 4 2
(0) (45) (36) (18)
0 8 0 3 0
(0) (73) (0) (27) (0)
Abbreviation: SD, standard deviation. a N ¼ 11.
HRQoL items were deemed clinically significant if rated ‘‘quite a bit’’ or ‘‘very much’’ as were symptoms present more than half of the days in a week. Clinically significant survey responses were marked with a highlighter pen by the research physician and given by hand to the medical oncologist immediately before the patient visit.
Statistical Analysis Continuous variables were summarized as the median and range, mean and standard deviation, and categorical variables as percentages. All percentages were rounded to the nearest whole number. Data were downloaded from REDCap to Microsoft Excel (2003, Microsoft, Redmond, Washington). It was analyzed with JMP (Version 9, SAS Institute Inc, Cary, North Carolina).
Results A total of 20 consecutive patients were screened in EPIC. The letter went to 16 patients by mail. It was not sent to 4 patients; 3 patients were 0 on a NRS-11. b Symptoms that were scored 4 on a NRS-11.
Of the 11 surveyed, 6 had pain. Among them, 2 had breakthrough and 1 had neuropathic pain. Average pain and worst pain severity in the last 24 hours were 4 and 8 in 4 participants, respectively. Signs of depression were evident in 2; participants felt little interest or pleasure in doing things and depressed or hopeless nearly every day. They also reported their food intake was less than usual during the past month. Among the ESAS symptoms, most had tiredness (9 of 11), anxiety, and decreased well-being (7 of 11). Next were drowsiness and anorexia (5 of 11), pain, shortness of breath, and depression (4 of 11; Table 2). Five reported other symptoms that were not in the survey questions; chest pain/discomfort (n ¼ 2), constipation (n ¼ 1), vomiting (n ¼ 1), and bleeding (n ¼ 1). Clinically significant anorexia, depression, drowsiness, and pain were present in 3 patients (Table 2). The median score for global QoL was 5 (range 1, 6). Symptom severity from EORTC QLQ-C15PAL is given in Table 3. Weakness was present in 8 patients and pain and trouble sleeping in 7 patients (Table 3). Of the 7 patients, 4 had clinically significant pain. All those who started the TC process completed the survey. All survey questions were answered. Of the 11 patients, 7 completed it unassisted. The mean (SD) time to complete the survey was 11 (+5) minutes.
Discussion A thorough pilot study is essential to evaluate the feasibility and to enhance study design prior to any research project.11 This pilot study was a detailed feasibility study from 3 perspectives: 1.
2. 3.
the perceived practicality and acceptance by patients and a physician of TC as an electronic self-report symptom assessment instrument completion rate completion time
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192 Table 3. Health-Related Quality of Life Assessment by EORTC QLQC15-PAL. Item (past wk) Ability to take a short walk Bed or chair bound Ability to eat and dress and toilet and wash Short of breath Pain Trouble sleeping Weakness Lack of appetite Nausea Constipation Tiredness Pain interfere with activities Tense Depression Worry Irritable
Not at all and a little, N
Quite a bit and very much, N
9 10 11
2 1 0
9 7 9 8 9 10 10 8 8 10 10 10 9
2 4 2 3 2 1 1 3 3 1 1 1 2
Abbreviations: EORTC QLQ-C15-PAL, European Organization for the Research and Treatment of Cancer Core Quality of Life Questionnaire for Palliative Care; wk, week.
To our knowledge, this is the first study to measure PROs using a TC with direct data transfer to a secure database. The results were provided to the physician prior to the scheduled appointment to facilitate structured symptom assessment. We did a comprehensive symptom and HRQoL assessment at first visit. Although we invited patients to arrive prior to their appointment, many were already in the outpatient waiting area for several reasons. Some travel great distances. Others were at the cancer center before hand for other procedures related to their initial encounter (eg, laboratory work and imaging). The mean completion time was 11 minutes which is rapid for a 40-item questionnaire. There was no delay in appointment times. This implied that clinic waiting time can be effectively utilized for this type of data collection. The high-completion rate and lack of assistance were likely influenced by a high-education level among participants. There were several requests for explanation of the terms and the use of scales in the ESAS. Some participants had issues with double negatives (eg, lack of appetite) in some survey questions’ wording. Likewise, concern arose if the same question was asked in different time frames (eg, now, last 24 hours, and last week). Others felt that the same symptom (eg, depression) asked repeatedly but in different ways was burdensome. Our sample was characterized by a high-symptom burden. Almost half of the participants reported other symptoms that were not in ESAS. These findings show the need for a comprehensive symptom list. The use of the REDCap for data acquisition and storage offered several benefits compared to pen and paper. A major advantage was the direct access to REDCap via secure wireless Internet connection. No additional software installation or development was needed. In addition, REDCap allowed secure Web-based access to authorized users, provided audit trails,
and a deidentified data export mechanism to popular common statistical software programs. Our experience was that PRO electronic data collection systems could be used for research concurrently with clinical practice. The high completion rate (100%) in our pilot study showed that electronic symptom assessment by TC is feasible in people at their first visit to a tertiary academic center. Furthermore, PRO data acquisition by REDCap on an iPad was efficient and practical. Of the 16 patients, 4 who had initially consented to participate either did not show up or canceled their appointment; so the participation rate was 75%. Notably, those who completed the questionnaires reported little difficulty with the TC symptom assessment tool. Most used the TC without assistance perhaps due in part to their general good health status.7 Questions left blank (eg, no answer) were avoided by REDCap error prompts. That way, the patient could verify whether they intentionally wanted to leave the question unanswered. Upon completion of the assessment, a printed report was provided immediately to the physician. The rapid transfer of results helped integrate systematic symptom assessment into the daily operational flow in an oncology clinic. This may also reduce respondent burden by flagging important symptoms and save time.12 The physician involved noted that survey results often identified symptoms that might have been overlooked.13 Tablet computers were perceived as helpful and acceptable by both the patients and the physician. Our findings also support the importance of systematic symptom evaluation to enhance physician–patient communication.14 The use of mobile electronic devices simplifies data acquisition and accelerates information transfer between patients and clinicians.15 A few studies have described TC use to evaluate symptoms in rheumatology16 and oncology.17-20 This is a new area in cancer symptom management research. There is a need to explore useful technologies to help clinical decision making and treatment evaluations. There were limitations to our study. The pilot study had a small sample size which represented data only from outpatients of a single oncologist. Therefore, our findings should not be generalized to other clinical settings. We did not collect some information on, for example, functional status and medication use, which would likely have influenced completion rate and completion time. Future research should: 1. 2. 3.
identify whether data acquisition is influenced by disease or functional status; develop applications to integrate questionnaires into EMRs; and assess user satisfaction.
Conclusions Studies using TC in busy outpatient clinics are practical. Most of those who received information participated. Most completed the survey without assistance. There was a 100% completion rate, and it took on average just over 10 minutes to complete. Clinic wait time can be usefully employed for
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this purpose. Information was collected and disseminated in real time and a structured format. More than half reported pain. The median global QoL was high for all. Based on ESAS, the top 3 most common symptoms were tiredness, anxiety, and decreased well-being. In EORTC QLQ-C-15PAL, the 5 most frequently reported symptoms were weak-
ness, tiredness, pain, trouble sleeping, and anorexia. Almost half reported other symptoms that were not in the questionnaire. The information gathered prior to physician encounter was useful in clinical practice. Patient and physician acceptability for these quick and useful TC-based surveys was excellent.
Appendix A Script for Research Physcian to Inform Patient of Study by Phone
This phone call is a follow up to letter you received previously telling you about our study This will be your first visit to the Taussig Cancer Institute Outpatient Clinic of Dr. B.E. We have a research group that is conducting a pilot study questionnaire with a tablet computer. We would like to ask about your symptoms and well-being before your first visit here. The survey has 40 questions. We will provide your answers to your doctor before he sees you. Would you like to meet with our research group and have them explain the study? You can have help in completing the survey either from your family member, us or whoever is coming with you. Yes, can you come 20 minutes early?
Appendix B Study Questionnaire PATIENT NUMBER: DATE OF REGISTRATION: INITIALS: PATIENT INSTRUCTIONS Thank you for completing this questionnaire to assess your pain and other symptoms. You may complete this on your own or with help from your family or healthcare professionals. You do not need to spend a lot of time on each answer. Please answer each question the best way you can, by selecting the most appropriate alternative, then press the grey box labeled ‘‘Save and Go to the Next Form’’. YEAR OF BIRTH (4 digits, for example 1952): GENDER:
c c
Female Male
PRESENT MARITAL STATUS
c c c c
Single Widowed Divorced/Separated Married/Cohabiting
HIGHEST COMPLETED EDUCATION
c c c c
9 years of schooling or less 10-12 years of schooling College or University: 4 yrs or less College or University: More than 4 yrs
LIVING SITUATION
c c c c c c
Alone With spouse/partner With spouse/partner and children With children With other adult(s) In an institution
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PAIN INTENSITY 1 Please rate your pain by marking the one number that best describes your pain on the average in the last 24 hours. 0: No pain 10: Pain as bad as you can imagine c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 PAIN INTENSITY 2 Please rate your pain by marking the one number that best describes your pain at its worse in the last 24 hours. 0: No pain 10: Pain as bad as you can imagine c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 NEUROPATHIC PAIN This question can tell us about the type of pain that you may be experiencing. This can help in deciding how best to treat it. Does the skin in the painful area feel different from normal; more numb or more sensitive?
c c c
Yes No Not applicable
BREAKTHROUGH PAIN Breakthrough pain can be defined as a brief flare-up of pain. It can be flare-up to the usual, steady pain you always experience (your baseline pain) OR it can be a pain that is different from your baseline pain.
c c
Yes No
DEPRESSION Over the last 2 weeks, how often have you been bothered by: Little interest or pleasure in doing things
c c c c
Not at all Several days More than half the days Nearly every day
DEPRESSION Over the last 2 weeks, how often have you been bothered by: Feeling down, depressed or hopeless
c c c c
Not at all Several days More than half the days Nearly every day
FOOD INTAKE As compared to by normal intake, I would rate my food intake during the past month as:
c c c
Unchanged More than usual Less than usual
PAIN Please mark the number that best describes how you feel NOW. 0: No pain 10: Worse possible pain c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 TIREDNESS Please mark the number that best describes how you feel NOW. 0: No tiredness 10: Worse possible tiredness (TIREDNESS ¼ LACK OF ENERGY) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 DROWSINESS Please mark the number that best describes how you feel NOW. 0: No drowsiness 10: Worse possible drowsiness (DROWSINESS ¼ FEELING SLEEPY) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 NAUSEA Please mark the number that best describes how you feel NOW. 0: No nausea 10: Worse possible nausea c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 APPETITE Please mark the number that best describes how you feel NOW. 0: No lack of appetite 10: Worse possible lack of appetite c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 SHORTNESS OF BREATH Please mark the number that best describes how you feel NOW. 0: No shortness of breath 10: Worse possible shortness of breath c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 DEPRESSION Please mark the number that best describes how you feel NOW. 0: No depression 10: Worse possible depression (DEPRESSION: FEELING SAD) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 ANXIETY Please mark the number that best describes how you feel NOW. 0: No anxiety 10: Worse possible anxiety (ANXIETY ¼ FEELING NERVOUS) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 WELL-BEING Please mark the number that best describes how you feel NOW. 0: Best well-being 10: Worse possible well-being (WELL-BEING ¼ HOW YOU FEEL OVERALL) c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10
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OTHER SYMPTOM Do you experience any other symptoms NOW? c Yes c No Please mention the symptom here: _______________ OTHER SYMPTOM Please mark the number that best describes how you feel about the additional symptom NOW. 0: No symptom 10: Worse possible symptom c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 c 8 c 9 c 10 SHORT WALK Do you have any trouble taking a short walk outside of the house?
c c c c
Not at all A little Quite a bit Very much
BED OR CHAIR Do you need to stay in bed or chair during the day?
c c c c
Not at all A little Quite a bit Very much
EATING/DRESSING/WASHING/TOILET Do you need help with eating, washing yourself or using the toilet?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK WERE YOU SHORT OF BREATH?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU HAD PAIN?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU TROUBLE SLEEPING?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU FELT WEAK?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU LACKED APPETITE?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU FELT NAUSEATED?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK HAVE YOU FELT CONSTIPATED?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK WERE YOU TIRED?
c c c c
Not at all A little Quite a bit Very much
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DURING THE PAST WEEK DID PAIN INTERFERE WITH YOUR DAILY ACTIVITIES?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU FEEL TENSE?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU FEEL DEPRESSED?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU WORRY?
c c c c
Not at all A little Quite a bit Very much
DURING THE PAST WEEK DID YOU FEEL IRRITABLE?
c c c c
Not at all A little Quite a bit Very much
For the following question please mark the number between 1 and 7 that best applies to you. HOW WOULD YOU RATE YOUR OVERALL QUALITY OF LIFE DURING THE PAST WEEK? 1: Very poor 7: Excellent c 0 c 1 c 2 c 3 c 4 c 5 c 6 c 7 THE FORM WAS COMPLETED/ASSISSTED BY
Acknowledgments The authors would like to thank Millie McKenzie, Carolyn Miclea, Mike Stilgenbauer, and Denise Dawson for their administrative support.
Author’s Note The Harry R. Horvitz Center for Palliative Medicine is a World Health Organization Demonstration Project in Palliative Medicine and is an ESMO Designated Integrated Center of Supportive Oncology and Palliative Care. This study was presented at the Multinational Association of Supportive Care in Cancer (MASCC)/International Society of Oral Oncology (ISOO) Symposium, June 27-29, 2013, Berlin, Germany.
Declaration of Conflicting Interests The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The authors received no financial support for the research, authorship, and/or publication of this article.
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