Professional Patient Navigation in Head and Neck Cancer

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Seminars in Oncology Nursing, Vol 25, No 3 (August), 2009: pp 212-221

PROFESSIONAL PATIENT NAVIGATION IN HEAD AND NECK CANCER LISE FILLION, MARIE DE SERRES, SANDRA COOK, RICHARD L. GOUPIL, ISABELLE BAIRATI, AND RICHARD DOLL OBJECTIVES: To discuss professional cancer navigation roles, models, implementation process and outcomes of patients and families dealing with head and neck cancers. One specific research is presented as an illustration.

DATA SOURCES: Published scientific papers, research review articles, implementations studies. CONCLUSION: Two independent cohorts of patients with head and neck cancers were compared according to the presence of the professional navigator (Exposed cohort n¼83) or not (Historical cohort n¼75). The Exposed cohort showed a better profile on several indicators of outcomes. The results clearly indicate an association between the presence of the professional navigator with continuity of care (higher satisfaction and shorter duration of hospitalization), and empowerment (fewer cancer-related problems, including body images concerns, and better emotional quality of life).

IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses can not only play an important role in continuity of care but also in supportive care by helping patients to cope better with cancer treatments, recovery or cancer progression and death issues.

KEY WORDS: Patient navigator in oncology, oncology pivot nurse, continuity of care, empowerment, cancer adjustment.

Lise Fillion, PhD,1,2,3 Marie de Serres, MSc,4 Sandra Cook, BA, HSM,5 Richard L. Goupil, PhD,2 Isabelle Bairati,2-6 Richard Doll, MSW, MSc.7 1 Universite´ Laval, Faculte´ des Sciences Infirmie`res, Que´bec, Qc, Canada 2 Centre de recherche en cance´rologie de l’Universite´ Laval, Que´bec, Qc, Canada 3 ´ Equipe de recherche de la Maison-Michel-Sarrazin, Que´bec, Qc, Canada 4 Centre Hospitalier Universitaire de Que´bec- Pavillon Hoˆtel Dieu de Que´bec, Que´bec, Qc, Canada 5 Cancer Care Nova Scotia, Halifax, NS,

Canada 6 Direction de sante´ publique de la Capitale Nationale, Que´bec, Qc. Canada 7 B C Cancer Agency, Vancouver, BC, Canada Address correspondence to Lise Fillion, Faculty of Nursing, 1050, rue de la Me´decine, Ferdinand-Vandry building, Laval University, Que´bec (Que´bec), Canada G1V OA6; e-mail: [email protected] Ó 2009 Elsevier Inc. All rights reserved. 0749-2081/09/2503-$32.00/0. doi:10.1016/j.soncn.2009.05.004

PATIENT NAVIGATION IN HEAD & NECK CANCER PATIENTS

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ATIENTS with cancer experience dissatisfaction with service fragmentation, delays in access, lack of information, and coordination between providers.1 As cancer care options become increasingly complex, patients and families often complain about a sense of isolation to deal with several cancer-related demands, feelings of powerlessness, and a lack of guidance about who to reach and where to go when they need information or medical advice about their disease, treatments, and side effects. Consequently, they often express the need for increased coordination, guidance, and decision support.2 They request timely information on the disease, treatments and available resources, better communication between health providers, and to be emotionally supported throughout the health care continuum.3 Those needs are particularly noticeable for patients with head and neck cancer because they are facing many stressors related to the severity of their condition, including body image concerns, loss of speech, and respiratory and nutritional challenges, which often impact on self esteem, family relations, and work-related issues.4 Continuity of care is especially important to patients with head and neck cancer because cancer treatments are intense and symptom management is often distributed among a wide range of service providers. It usually spans a lengthy trajectory from initial diagnosis through to treatment, cure, recurrence, or palliation.5 Continuity of care can be defined as the degree to which a series of discrete health care events is experienced as coherent, connected, and consistent with the patient’s medical needs and personal context.6 Cancer patients and their care providers consider continuity of care and unrushed consultation to be very important. In contrast, discontinuity is perceived to lead to a lack of personal and case familiarity and to communication difficulties.7 Facing a fragmented care system, patients have often referred to it as a ‘‘maze’’ and express a need for navigation. To improve cancer patient’s continuity of care, cancer navigation programs have emerged as a specific strategy. This article presents development of professional cancer navigation roles and models that address the needs of patients and families dealing with head and neck cancers across the continuum of care. Key functions and outcomes related to professional navigation are discussed, as well as challenges and resources linked to implementation process

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and research evidences. One specific research related to impact evaluation of head and neck patient navigation is presented as an illustration.

PROFESSIONAL CANCER NAVIGATION MODELS Originating in the United States, cancer navigation was essentially a peer-led model corresponding to a community-based initiative that relied on volunteers to help minimize the barriers to cancer care encountered by socially and economically marginalized people.8 Navigation in the United States has now been implemented at all stages of the cancer care continuum9 and still has a primary focus on barriers. This includes financial problems related to health care access, transportation issues, language, and other cultural barriers, and may represent ‘‘minimal’’ models of case management as opposed to ‘‘comprehensive’’ models.10 In Canada, the Cancer Journey Action Group of the Canadian Partnership Against Cancer11 proposed three models of cancer navigation: peer-led, professionally led, and virtual (online) cancer navigation based on emergent initiatives. Most of the evidence documenting cancer navigation models through the cancer care continuum, from diagnosis to palliation, has focused on a professional-led model and promoted a comprehensive care management model.12-15 Professional cancer navigators intend to ease and expedite patients’ access to services and resources, improve continuity and coordination of care throughout the cancer care continuum, and serve as a patient advocate where needed.16 Although the term ’’cancer patient navigation’’ is relatively new within the Canadian health care system, the concept is not. The following terms were used to describe, essentially, the professional navigator role: Case Manager, Clinical Coordinator, Cancer Support Nurses, Follow-up Nurses, Breast Specialist, Breast Cancer Coordinator, Patient navigator.17 Among them, case manager is sometimes labeled as a professional navigator.10 Case management models have been useful for developing an understanding about how professional navigators may contribute to an increased continuity of care. Minimal models involve outreach, patient assessment, and referral to service providers, whereas more comprehensive models add advocacy on behalf of patients, education, support, problem-solving, and crisis intervention.

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Definitions often relate to a profession, and professional navigators typically have a background in nursing or social work. Regardless of the profession and academic training, a professional navigator for cancer patients must possess clinical expertise in oncology, communication and problem-solving skills, and broad knowledge of the health care system to be effective.18 However, the professional navigator role goes beyond the initial minimal roles of the case manager, who typically helps the patient to follow medical protocol and schedule appropriate appointments. While basic case management may help to improve delay within the cancer continuum of care, it does not necessarily make it connected and coherent from the patient’s perspective. The professional navigator role corresponds to a more comprehensive medical or social model of case management that values humanizing the care trajectory and empowering the patient and family.14 Professional Navigation Models in Canada The first Canadian professional Cancer Navigation program emerged in 2001. Cancer Care Nova Scotia (CCNS) initiated their cancer patient navigator program (CPN) after a consultation with patients and health professionals. Professional cancer patient navigators (highly trained oncology nurses) work throughout a district health authority to help newly diagnosed patients, those under going treatment and in follow-up, as well as cancers survivors. They offered patients, families, and caregivers assistance through the maze of options and services needed to achieve the best possible outcomes and quality of life through all phases of the cancer experience. Key functions includes notably systematic screening and assessment of patients/families needs, standardized and personalized cancer education, and facilitating access to timely medical and psychosocial care by linking patients to other members of the interprofessional team to services and resources. Evaluation of their program show improved outcomes for patients in ‘‘navigated districts’’ across a variety of quality of care dimensions.12 Concomitantly to the Nova Scotia navigation initiative, the Quebec government’s cancer control strategy established the ‘‘infirmiere pivot en oncologie’’ (Pivot Nurse in Oncology/PNO) to facilitate coordination of the cancer services network. The key functions of PNOs are assessment of needs, symptom management, education, support, and facilitation of coordination,14 and the role may

vary according to the tumor site, available services and oncology teams. Fillion et al qualitatively documented the PNO’s role and functions, its effect on adjustment and adaptation for patients with head and neck cancers, the interdisciplinary work, and continuity of care in a tertiary care hospital.14 More recently, following the same methodology, the results were replicated when implementing a new model of PNO in the community.19 The three program evaluations of professional navigation (Nova Scotia and two PNOs in Quebec) strongly emphasize the importance of field preparation and support to professional navigators to achieve improvement in continuity of care and patient empowerment. Moreover, an additional implementation study of nine PNOs in different regions of the province of Quebec also documented the importance of the field preparation, the presence of leadership with a clear vision of the role and functions (patient-centered), support from managers, and ongoing training and managerial support to the professional navigators to sustain the two interrelated dimensions of the navigation role, organizational and clinical.20 More recently, a follow-up of this study described five factors related to a successful long-term implementation of this role: clear vision, strong leadership (organizational and clinical), quality of team work (interprofessional training, coaching), flexible structure of the organization to integrate evolving professional roles, and mobilization of additional resources, as caseload is increasing.21 Without the mobilization of additional resources, organizational functions (eg, facilitating coordination), may consume most of the PNOs time, limiting clinical functions (eg, symptom management, patient empowerment), and compromising the patient-centered role integrity.21 The implementation studies supported the need to describe professional navigation as a complex concept including two dimensions, organizational and clinical. Professional Navigation Framework To clarify the concept of professional cancer patient navigation, its related functions, and potential outcomes, a bi-dimensional framework is currently under development22 (see Table 1). The first dimension corresponds to a set of organizational functions, aiming at facilitating continuity and coordination of care. Among key organizational functions, navigation includes timely and tailored information, proper use of communication tools,

TABLE 1. Professional Navigation Framework* Dimension Facilitating continuity of care (experience of care as coherent and connected)

Concept

Indicator Patients knowledge and understanding of the cancer continuum Satisfaction with exchange information Satisfaction with coordination Duplications of services Delays/waiting time Symptoms relapse Worsening conditions Hospitalizations Emergency visits

Providing timely and tailored information Proper use of communication tools (eg, electronic chart)

Effectiveness in which coherent information is transferred and understood

Management continuity

Conducting comprehensive needs assessment Matching unmet needs with services and resources Facilitating coordination of psychosocial and medical care Proper use of case-management system and care plan (treatment and follow-up Mapping care trajectory Being easily accessible through the cancer continuum Ongoing relationship Education, modeling, coaching to increase: Outcomes expectancies Self-efficacy expectancies Facilitating: Problem solving Decision making Screening for distress Instrumental and emotional support (counseling) Referrals

Coherent and timely coordination of services Participation of patient in care

Cancer management

Active coping

Support

*Note: Final validation of the navigation framework is in process.

Effective navigator-patient communication

Satisfaction with providers Trust

Perceived sense of mastery for self-care and self-action to manage cancer, treatment, side effects (physical) Capacity to cope with practical and psychosocial changes

Unmet needs (physical, practical, psychosocial) or cancer-related problems Self-efficacy Active coping strategies Quality of life

Capacity to deal with emotions and grief Perceived support

Distress Emotional well-being Social support

PATIENT NAVIGATION IN HEAD & NECK CANCER PATIENTS

Outcome

Informational continuity

Relational continuity

Promoting patient and family empowerment (care providers as supportive partners in care)

Process/Functions

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comprehensive needs assessment, and matching it with individual or external resources within the cancer care organization and the community, facilitating coordination of treatments, mapping, or using care pathways, and being easily accessible. As a second dimension, a set of clinical functions may globally correspond to patient-centered care and empowerment. Key functions may relate to a reinforcing capacity to assist patients and families to cope with the disease and treatments, facilitation of the decision-making process, mobilizing social support resources to face role changes, reinforcing active coping strategies to solve problems and manage distress, and providing transitional support (counseling).

head and neck cancers. Based on a navigation conceptual framework described earlier, in the case of head and neck cancers, indicators of continuity of care were selected (satisfaction and hospitalization duration). In addition, indicators of empowerment that included cancer-related problems relevant for that population, such as body image and quality of life, were retained. The objective of the study was to estimate the extent to which the presence of the PNO was associated with better continuity of care (satisfaction and hospitalization) and empowerment (cancerrelated problems and quality of life) in patients with head and neck cancers.

METHOD

Professional Navigation and Research While several articles have described related roles and their theoretical relevance for cancer patient satisfaction toward satisfaction of care and empowerment (eg, implementation and process oriented), very few implementation projects of professional navigators in oncology settings were evaluated with experimental design and quantitative outcomes.17 To our knowledge, only one study15 in Canada documented the impact of professional navigator on patient outcomes in a randomized controlled trial. Patients with lung or breast cancers were assigned to either a group that received care by an oncology pivot nurse in addition to usual care or to the control group, which received usual care from oncology clinic nurses. No differences in patients’ patterns of symptom distress, fatigue, quality of life, and health care resource usage were found. One limit of this study resides in the lack of documentation of usual care. The authors did not describe the quality of clinical care given in their usual care condition. Outcomes were related to nursing symptom management, not focusing directly on continuity of care or patient empowerment. In addition, before performing impact studies on outcomes, evaluative research should first document the implementation process and make sure that the professional navigators are well-integrated in the multidisciplinary team or in their community, and performed the functions that they are supposed to do. Following an implementation study of an PNO in a head and neck cancer setting,14 the current study was designed to document the impact of adding this professional navigator on the continuity of care and empowerment of patients with

Design and Procedure Two independent cohorts of patients were compared according to the presence of the PNO (Exposed cohort) or not (Historical cohort). Eligible participants were patients with head and neck cancers followed for the first time at the oncology clinic of the university hospital for the reference period. Participants in the Historical cohort went to the clinic the year before the implementation (from 07-12-2001 to 08-28-2002). The implementation of the PNO occurred in September 2002. Participants in the Exposed cohort were the patients met by the PNO in the first year following implementation (from 10-092002 to 12-04-2003). All eligible participants received a letter of invitation to participate in an evaluation study from the director of the Head and Neck Department of the university hospital. The document included an information sheet, the questionnaires, two copies of the informed consent form, and a return envelope. Two reminders were sent. The procedure received the approval of the Ethics committee of the university hospital. Data Collection Data were collected from a questionnaire completed by participants. The mailed questionnaire comprised three sections. The first included socio-demographical characteristics. The second was on satisfaction, using the French version of the EORTC-SAT32,23 which measures several dimensions of patient satisfaction (perceived

PATIENT NAVIGATION IN HEAD & NECK CANCER PATIENTS

availability, emotional support, technical abilities, and quality of the given information). Satisfaction results were computed for doctors, the health care team, and the institution. The third section of the questionnaire was on adjustment to cancer and included cancer-related problems and quality-oflife indicators, which measure several cancerrelated problems and quality of life indicators. The French-Canadian version of the Inventory of Recent Life Experiences–for Cancer patients (IRLE-C)24 and three items of the Supportive Care Needs Survey (SCNS)25 were selected. The IRLE-C includes both general and specific cancer-related problems (concerns about future, incapacity, social problems, body image, and medical and treatment problems). Three items from the SCNS (‘‘Issues of sexuality’’ factor) were translated in French and used to document concerns associated with sexual problems. For quality of life, the general module of the EORTCQLQ-C3026 questionnaire and an adaptation of a scale from the Head and Neck Radiotherapy questionnaire (HNRQ)27 were retained. The C30 has six subscales: general, physical, role, cognitive, emotional, and social functioning domains. The HNRQ was reduced (from 23 to 14 items) and, its Likert scale was reframed (from 7 to 4) to be consistent and added to the C30 and to be merged into a single physical symptoms scale relevant to head and neck cancers. Data collection also involved two additional sources: provincial database on hospitalization as well as public health service use, and medical records. Information on hospitalization and service use came from the Quebec provincial data-base, MED-ECHO. The variables selected were: (1) number of hospitalizations, (2) hospitalization duration (for each stay, total, average by stay), and (3) emergency level at admission (highest level of emergency for each patient through all hospitalizations). Reference periods for data extraction correspond to recruitment periods. Medical records were used to document cancer tumor site, cancer stage, recurrence, and a comorbidity indicator, the Charlson Index.28

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done according to guidelines recommended by Tabachnik and Fidell.29 Statistical analysis followed a three-step plan. First, group equivalence on demographic and medical variables was tested with chi-square and two-tailed t tests for independent samples. Second, preliminary analyses using correlations and one-tailed t tests for independent samples were conducted to identify potential confounding variables for further analyses. Finally, multiple regression models were used to test for a cohort effect on each category of indicators or dependent variables after adjusting for confounding variables.

RESULTS Participants and Group Comparisons The response rate represents the number of completed questionnaires divided by the total number of questionnaires sent. Blank questionnaires and questionnaires with too much missing data were not counted as being ‘‘returned.’’ Of the 133 potential participants in the Historical cohort, 83 completed questionnaires were returned, resulting in a 62.4% total response rate. For the Exposed cohort, the response rate was 63.6% (75 out of 118 potential participants returned completed questionnaires). Both cohorts were similar on demographic and medical variables (see Table 2). Age was similar across cohorts. A comparable pattern was observed for education. Occupational status of patients did not differ significantly. Most patients were retired in the both cohorts, followed by employed and on sick leave. The distribution of cancer stages among patients was also similar for the Historical and Exposed cohorts. However, there were fewer men in the Historical cohort. Larynx cancer site was the most prevalent, especially in the Historical cohort. Finally, for the Charlson index (comorbidity and severity), the Exposed cohort index was higher compared with the Historical cohort.

Data Analyses

Selection of Confounding Variables and Final Regressions Analyses

Data were entered in a FileMaker Pro 5 database (Santa Clara, CA, USA), and converted for processing and analysis to SPSS 11.5 (Chicago, IL, USA). Screening for outliers and missing values was

Socio-demographic and medical variables were retained as confounding variables if a difference between groups was significant or marginally significant, or if they were related to the dependent

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TABLE 2. Characteristics of Patients With Head and Neck Cancer According to Historical and Exposed Cohorts Characteristics

Historical cohort (n ¼ 83)

Exposed cohort (n ¼ 75)

P-value

Mean age (SD), years No. of men (%) Mean years of education (SD), y Professional status at the time of study No. of retired patients (%) No. of patients working (%) No. of patients on sick leave (%) No. of patients with other status (%) No. with laryngeal cancer (%) Stage of cancer No. of incident cases with early stage (%) No. of incident cases with advanced stage (%) No. of cases with recurrence (%) No. of cases with unknown status (%) Mean of Charlson co-morbidity score (SD)

63.9 (12.0) 55 (66) 10.0 (3.7)

64.1 (11.3) 60 (80) 10.5 (4.1)

.90 .05 .41

49 (59) 13 (16) 12 (14) 9 (11) 35 (42)

41 (55) 11 (15) 8 (11) 12 (16) 20 (26)

.82

30 (36) 29 (35) 19 (23) 5 (6) 0.93 (1.40)

17 (23) 30 (40) 23 (31) 5 (7) 1.54 (1.87)

.31

and independent variables of the model (P < .25). After testing for those relations, gender, cancer site, cancer stage, and the Charlson index were retained as confounding variables. Multiple regression models were used to test the effect of exposure to the PNO while controlling or not for those confounding variables. Impact on Continuity Satisfaction In many areas, especially doctor-related and waiting time, satisfaction was higher in the Exposed cohort after controlling for confounding variables. Table 3 shows the details for each indicator of that category of outcomes. Hospitalization After controlling for confounding variables, number of hospitalizations by patient was found to be significantly different in the two groups, being lower in the Exposed cohort. Also, a logistic regression analysis was done on hospitalization emergency for patients who were hospitalized. The emergency level was not significantly predicted by cohort status after controlling for confounding variables. Impact of Empowerment Cancer adjustment The Exposed cohort manifested higher adjustment index compared with the Historical cohort on several indicators of this category, even after

.04

.02

confounding variables’ influence was eliminated (see Table 4). A difference on total cancer-related problems, lower in the Exposed cohort compared with the Historical one, was noticed. Moreover, significant differences were also found on specific subscales. Table 4 shows that future concerns, social problems, body-image concerns, and sexuality-related problems were reported to be less problematic in the Exposed cohort compared with the Historical one. Quality of life After controlling for gender, age, education, cancer site, cancer stage, and the Charlson index, only one difference was significant. There was a better emotional functioning in the Exposed cohort (see Table 4). In summary, the cohorts were equivalent on most of the socio-demographic and medical variables. After adjusting for confounding variables, the Exposed cohort showed better indicators on satisfaction, waiting time and service use, as well as on cancer problems and emotional quality of life.

DISCUSSION The objective of the study was to estimate the extent to which the presence of the PNO, a professional navigator, was associated with better continuity of care and empowerment indicators in patients with head and neck cancer. Results of this study suggest the positive value of adding this new role to the team. The Exposed cohort showed

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TABLE 3. Continuity of Care: Comparisons of Mean Scores of Satisfaction (SAT32) and Hospitalizations According to Historical and Exposed Cohorts

Satisfaction* Overall Doctors Availability Interpersonal skills Technical skills Information Team Availability Psychosocial support Technical skills Information Hospital Access Employees kindness and helpfulness Waiting time Exchange of information within the care team Comfort Mean no. of hospitalizations Total days of hospitalizations

P-value

Adjusted b† Coefficient

P-value

90.7 (13.7)

.03

þ5.5

.03

74.5 (25.2) 79.8 (21.6) 86.6 (15.6) 78.7 (23.3)

85.4 (2.0) 87.4 (17.1) 91.1 (12.7) 86.8 (19.3)

.002 .01 .05 .02

þ11.4 þ7.9 þ5.2 þ8.1

.002 .01 .03 .02

79.4 (21.7) 83.6 (13.4) 83.7 (17.1) 77.9 (22.6)

85.4 (18.6) 89.3 (15.6) 87.0 (18.0) 85.9 (18.2)

.07 .04 .23 .02

þ6.3 þ5.9 þ4.0 þ8.4

.06 .04 .16 .01

67.6 (25.5) 83.9 (16.6)

70.4 (24.1) 86.9 (14.9)

.47 .23

þ2.5 þ3.5

.54 .17

77.2 (22.2) 77.3 (19.6)

85.6 (17.5) 81.2 (21.5)

.009 .24

þ9.6 þ4.5

.004 .18

76.6 (21.5) 1.8 (1.1) 12.9 (27.6)

78.8 (21.2) 1.2 (1.3) 10.6 (18.3)

.52 .002 .52

þ1.8 0.56 1.91

.61 .003 .62

Historical Cohort (n ¼ 83) Mean (SD)

Exposed Cohort (n ¼ 75) Mean (SD)

85.5 (16.7)

*Scores range from 0 to 100, with a high score representing a higher level of satisfaction. †The group of reference is the historical cohort.

a better profile on several indicators of outcomes. The results clearly indicate an association between the presence of the PNO with continuity of care (higher satisfaction and shorter duration of hospitalization) and empowerment (defined by fewer cancer-related problems and better emotional quality of life). For continuity of care, the results illustrate that satisfaction toward oncologists (availability, interpersonal and technical skills, information), the oncology team (psychosocial support, and information), and the health care center or hospital (waiting time) was higher for the patients exposed to the PNO. Patients from the Exposed cohort reported higher satisfaction with oncologists. This is consistent with previous observations following implementation of a similar role (CPN in community) in Nova Scotia,12 where one of the reported findings was the fact that patients who benefited from a professional navigator were perceived by oncology staff as being better prepared. However, in contrast to Skrutkowski’s study,15 also conducted in Quebec with a PNO, the results from the current study show positive impact on health services use. The Exposed

cohort had a lower number of hospitalizations than the Historical cohort. It is possible that the way hospitalization is measured (using a provincial database) was more valid and reliable than using an internal database (limited to hospitalizations in only one hospital). The selected indicators for empowerment included cancer-related problems and quality of life. The positive impact of the PNO on empowerment or cancer adjustment was mainly noticed for problems related to the cancer. Patients in the Exposed cohort reported fewer future concerns, social and communication problems, sexual concerns, and better body image. This last finding is quite relevant at the clinical level because it highlights a particular negative impact of head and neck cancers.4 However, our results failed to demonstrate a better quality of life in patients who were exposed to the PNO. The only impact on quality of life was for the emotional dimension. Although surprising, yet quite consistent with other recent findings,16 this result may suggest that the presence of an PNO is not directly related to perceived quality of life in patients

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TABLE 4. Empowerment: Comparisons of Mean Scores of Quality of Life (EORTC-QLQ-C30) and Cancer-Related Concerns (IRLE-C), Including Sexual Needs (SCNS) According to Historical and Exposed Cohorts

Functioning Scales*

Historical Cohort (n ¼ 83) Mean (SD)

Exposed Cohort (n ¼ 75) Mean (SD)

P-value

Adjusted b† Coefficient

P-value

Quality of life- Global Physical Role Cognitive Emotional Social IRLE-C-total Future Concerns Functional Disability Social Problems Body-image Concerns Medical/Treatment Problems Sex-related Problems

58.6 (25.5) 75.6 (25.0) 67.3 (39.6) 75.0 (25.7) 65.9 (26.2) 68.4 (33.2) 50.05 (14.33) 9.23 (3.22) 12.94 (3.02) 8.31 (3.34) 9.35 (3.99) 5.50 (1.94) 5.13 (2.55)

59.1 (23.3) 74.4 (27.2) 66.9 (38.5) 79.6 (22.7) 72.2 (24.0) 71.8 (32.1) 46.48 (12.1) 8.48 (2.38) 12.92 (0.36) 7.39 (2.67) 8.01 (2.72) 5.20 (1.70) 4.04 (1.43)

.89 .77 .95 .24 .12 .51 .09 .10 .96 .05 .015 .31 .001

þ2.5 þ2.0 þ3.8 þ5.3 þ8.3 þ6.8 5.04 1.06 0.47 1.25 1.94 0.37 1.38

.54 .65 .56 .21 .045 .22 .02 .03 .35 .01 .0005 .23 <.0001

*Score ranges from IRLE-C depend on the dimensions; the total score ranges from 30 to 120. For all dimensions, a high score represents a higher level of problems. Score concerning the sex-related problems ranges from 3 to 12, with a high score representing a higher level of problems related to sexuality. †The group of reference is the historical cohort. The regression coefficients evaluating the association between the IRLE-C scales and the intervention are adjusted for sex, Charlson co-morbidity score (continuous), site of cancer (laryngeal, others), and stage (incident cases with early stage, incident cases with advanced stage, recurrence or unknown status). The regression coefficient evaluating the association between the score of sex-related problems and the intervention are adjusted for sex and Charlson comorbidity score (continuous).

recently treated for head and neck cancers. This indicator could be too broad and the use of a more specific indicator of empowerment, such as a measure of self-efficacy as used by Doll et al13 in their implementation descriptive study or active coping strategies to deal with the disease, could have been more sensitive. Globally, the direction of means support the positive impact of having an oncology patient navigator for patients with head and neck cancers.

Therefore, the study design could be improved through the addition of other settings and ensuring more similarity between comparison groups. Inclusion of a longitudinal component could also allow the investigation of different outcomes through the trajectory of cancer and its treatments. Second, a larger sample size would also add power to statistical analyses and improve external validity.

CONCLUSION Study Limitations The main limitation of this study is the crosssectional and non-equivalent group design. The relationship between the presence of the PNO and several indicators may be related to a third variable, even if we statistically controlled for several relevant confounding variables. In addition, a single time measurement limits the investigation of the impact of the PNO on dynamic outcomes, such as changes of cancer adjustment and quality of life over time. The sample size is also limited. In addition, participants were recruited at only one university hospital, which limits generalizability of results to patients with head and neck cancers outside of this setting.

Despite the limitations, this study documents a positive influence on continuity of care and empowerment indicators of having a professional navigator for patients with head and neck cancer. Very few studies have included quantitative indicators when implementing this role in oncology, especially with highly complex or extended needs for these clients. In describing a positive influence on cancer adjustment issues such as body image concerns, this study suggests that nurse specialists such as the PNO can not only play an important role in continuity of care, but also in supportive care by helping patients to cope better with cancer treatments, recovery, or cancer progression and death issues.

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