In 2008, an Integrative Oncology Program (IOP), aiming to improve patients’ quality of life during chemotherapy and advanced cancer, was launched within the Clalit Health Organization's oncology service at the Lin Medical Center, Haifa, Israel. The IOP clinical activity is documented using a research-based registry protocol. In this study, we present an analysis of the registry protocol of 15 Arab patients with cancer who were referred to the IOP. Analysis of patients’ reported outcomes using the Edmonton Symptom Assessment Scale suggests that integrative medicine care improves fatigue (
The Middle East is represented by a rich spectrum of indigenous traditional schools of medicine modeled on a mosaic of social, religious, and spiritual perspectives. Testaments to the amalgam of indigenous roots of medical knowledge can be found in current ethno botanical surveys which document the use of herbs for cancer care in the regions of Israel [
Several studies documented the significant use of complementary medicine (CM) by patients in the Middle East during chemotherapy (Israel, 49%) [
In Israel, the concept of CM integration within conventional care has been significantly studied among the Arab population in northern Israel. Ben-Arye and his colleagues [
Following this study, the Haifa and Western Galilee District of CHS initiated a study in 2007 to examine the possibility of CM integration within its oncology service (OS). In 2008, an Integrative Oncology Program (IOP) was launched as a free-of-charge clinical service aiming to improve patients’ QOL during chemotherapy and advanced disease state. The IOP is based on a multidisciplinary team that includes physicians and practitioners that are dual trained in conventional care as well as CM. The IOP team provides a wide spectrum of traditional and CM modalities which include nutritional counseling (diet and supplements), herbal medicine, mind-body and touch therapies, acupuncture, anthroposophic medicine, homeopathy and spiritual care. In this paper, we present data regarding Arab patients receiving integrative treatment offered by the IOP during the years 2009–2011. We examine the needs and concerns of Arab patients who were referred to the IOP and explore difficulties and barriers to the provision of CM to this group of patients in integrative setting. Based on these observations, we advocate practical recommendations that may facilitate a cross-culturally sensitive approach that will resonate with Arab patients’ expectations and needs in similar integrative health settings.
The IOP clinical activities are documented in a research-based registry protocol (RP) approved by the IRB of the Carmel Medical Center, Haifa, Israel. The RP monitors patients’ needs and concerns, symptom and QOL assessment, and prospective evaluation of clinical outcomes. In addition, the RP documents referral patterns, CM practitioner-patient-oncologist communication aspects, and assessment of the patient’s, oncologist’s, and the integrative physician’s perspectives regarding the impact of the integrative intervention on the patient’s well-being.
Figure
Flowchart of clinical and communicational evaluation along the sequence of integrative sessions within the Integrative Oncology Program (IOS: integrative oncology service; IP: integrative physician; IM: integrative medicine).
Assessment questionnaires include the following.
(a) MYCAW is an individualized questionnaire constructed and validated by Paterson et al. [
(b) ESAS is a questionnaire developed for assessing the symptoms of patients receiving palliative care [
(c) Questionnaires administered to the IP and/or oncologist and/or patients were developed by the authors following a comprehensive literature review of patients’ needs, concerns, and expectations regarding CM in the oncology setting and interviews with 24 patients in different phases of oncology treatment and with 61 health care providers (HCPs) and CM practitioners. Afterwards, a focus group, composed of 5 patients in different phases of cancer treatment, was used to refine the questionnaire and improve its comprehensibility. The focus group participants varied in age, sex, education, health status and CM use. Based on their feedback, the questionnaire was revised and sent for reappraisal to 7 of the HCPs. The final version of the 20-question questionnaire was administered by the IP following initial consultations. The questionnaire consists of 9 limited-choice questions (yes, no, other, or not relevant), 4 multiple-choice questions, one open question, and 6 questions that use a Likert-like scale. Independent researchers interviewed patients, following the IP’s initial and concluding assessment, using a similar form of the questionnaire filled in by the IP. In addition, a researcher typically phoned to interview patients no longer attending the IM sessions. Another questionnaire was administered to the patient’s oncologist following the IP’s concluding assessment. This shortened questionnaire format consists of 4 questions including 3 that utilize a Likert-like scale.
Data was evaluated using the SPSS software program (version 18; SPSS Inc., Chicago, Ill). Wilcoxon Signed Ranks Test and paired
Participation in the registry protocol-based IOP research was limited to patients in the CHS Haifa and Western Galilee OS during chemotherapy or advanced active disease. The total number of new patients referred to the OS ranges from 800 to 1000 per year. Data regarding the cultural and religious characterization of this newly referred population was not available, nor was data related to the population of patients who theoretically meet the inclusion criteria for referral to the IOP. The best culture-related data available was obtained from analysis of nurse oncology intakes (NOI) which were performed prior to beginning chemotherapy in patients receiving intravenous adjuvant, neoadjuvant, or palliative chemotherapy for the first time in their life. The NOI-based data was collected and analyzed starting from 14/7/2009 (parallel to the launching of the registry protocol) and up to 14/7/2011.
Based on the patient’s self-report of spoken language during the NOI, we divided patients into two groups: Arabs (patients speaking Arabic solely or in addition to Hebrew or other languages) or non-Arabs (patients speaking Hebrew or other languages but not Arabic). In cases not determined by the language criterion, we assigned the patient to one of these groups according to the father’s name. Five hundred thirty-one patients were thus grouped based on the NOI data during the two-year study, of whom 103 were Arabs (19.4%) and 428 non-Arabs (80.6%). This data may not reflect the entire population of patients who could have been referred potentially by the OS health providers to the IOP, for the following reasons: (a) patients with recurrent disease treated with chemotherapy initiated prior to July 2009 (about 42.4% of patients in the OS are receiving chemotherapy for recurrent disease); (b) patients receiving oral chemotherapy, biological or hormonal therapy; (c) patients receiving palliative care with no chemotherapy initiated after July 2007.
During this two-year period, 230 of the 531 patients (recorded in NOI data) were referred to the IOP by the OS oncologists, oncology nurses, or OS social workers. Of these referrals, 224 met the inclusion criteria for IOP admission and enrollment in the registry protocol-based research. Of the 224 patients invited for IOP assessment, 203 (response rate 90.6%) participated in the IP’s initial intake and provided written consent to participate in the research protocol study. Of the 203 study subjects, who were monitored in the registry protocol, 15 were Arabs (7.39%) and 188 were non-Arabs (92.61%). Figure
Algorithm of study recruitment (in brackets the proportion of Arab patients).
Of the 21 patients who were referred to the IOP but did not attend the IP’s intake, 4 were Arabs and 17 non-Arabs. The main reason for nonattendance was difficulty in scheduling appointments during progressive treatment.
The demographic characteristics of Arab patients enrolled in the integrative registry protocol within the OS are presented in Table
Demographic characteristics of Arab patients enrolled in the integrative registry protocol within the oncology service (OS) in the Lin Medical Center, Haifa.
Patient’s code | Age | Gender | Religion | Settlement type and zone* | Cancer site | Oncology status (and chemotherapy setting) |
---|---|---|---|---|---|---|
1 | 59 | F | Christian | Urban 1 | Breast | Localized (adjuvant) |
2 | 44 | F | Muslim | Urban 3 | Breast | Localized (adjuvant) |
3 | 62 | F | Christian | Urban 3 | Breast | Advanced (palliative) |
4 | 47 | M | Druze | Rural 3 | Mesothelioma | Advanced (palliative) |
5 | 46 | F | Druze | Rural 3 | Stomach | Localized (adjuvant) |
6 | 45 | F | Druze | Rural 3 | Breast | Localized (adjuvant) |
7 | 44 | F | Druze | Semiurban 3 | Unknown | Advanced (palliative) |
8 | 62 | F | Christian | Urban 3 | Breast | Localized (adjuvant) |
9 | 38 | F | Muslim | Urban 3 | Breast | Localized (adjuvant) |
10 | 22 | M | Muslim | Rural 3 | Testicular | Localized (adjuvant) |
11 | 65 | F | Muslim | Urban 3 | Bladder | Localized (adjuvant) |
12 | 67 | M | Muslim | Urban 1 | Colon | Localized (adjuvant) |
13 | 67 | F | Muslim | Semiurban 2 | Lung | Advanced (palliative) |
14 | 42 | F | Christian | Urban 1 | Colon | Advanced (palliative) |
15 | 77 | M | Christian | Urban 1 | Colon | Advanced (palliative) |
*Distance from the oncology service in Haifa is classified according to zones as follows: zone 1: city of Haifa; zone 2: up to 20 kilometers from Haifa; zone 3: more than 20 kilometers from Haifa.
Referral to IOP was performed via health care practitioners’ (HCPs) structured referral letters that specify the indications for referral to the integrative treatment. Of the 15 referrals, 9 were administered by oncology nurses, 4 by oncologists, and 3 by the OS social workers (one referral was administered by both nurse and social worker).
Nine of the 15 patients (60%) reported previous use of traditional/CM in the context of cancer care. Although the IP specifically inquired about cancer-related CM use at the beginning of the medical intake, the majority of patients disclosed CM use only when asked for the second or third time towards the end of the interview. In these cases, disclosure was often related to the patient becoming aware that the definition of cancer-related CM also includes QOL improvement and symptom management rather than curing cancer.
General expectation to reduce chemotherapy side effects was the leading referral indication (6 referrals), followed by more specific expectations concerning symptoms such as anxiety (5), fatigue (3), and vomiting (2). Compared to indications for referrals, patients expressed additional expectations from the IP: what to eat and which herbs to use (4), how to alleviate fatigue and strengthen their condition (4), and how to improve management of pain (3), emotional state (2), and other symptoms. Expectation analysis of each of the 15 referrer-patient couples revealed that matching of expectations was largely evident in only four pairs for specific symptoms that need to be addressed by the IP (e.g., improving urination, bitter taste, stomatitis, and other gastrointestinal symptoms). Compared to HCPs, patients expressed more concrete expectations from the IP (e.g., specific symptom improvement versus general reduction of side effects) and in some cases anticipated outcomes beyond QOL improvement such as cancer cure and recurrence prevention.
Assessment of HCP-IP communication following the IP’s initial intake revealed that the IP addressed a medical letter to all 15 patients’ oncologists and to 14 nurses, 14 social workers, and 9 family physicians. Typically, these letters were referred to 3-4 of the patient’s HCPs and often responded to by at least two HCPs.
Patient’s and IP’s evaluation were based on questionnaires completed by the IP following the initial visits and semistructured interviews with patients that were conducted by an independent researcher. Of the 15 patients interviewed, 5 anticipated difficulty in implementing the therapeutic plan as presented by the IP in the first visit. In contrast, the IP expected difficulty in 12 of the patients, mainly due to limited accessibility to the clinic and an impression that these patients doubted the benefits of the treatment. In 12 out of 15 patients there was incongruence between the patient and IP regarding perceived difficulty in implementing the treatment plan. This patient-IP mismatch is also evident in 9 patients regarding satisfaction following the initial visit. Compared to patient evaluations, IP scores were higher in 7 of these 9 pairs.
Evaluation of the severity of patients’ two main concerns was performed both in the initial IP intake and the concluding session that followed several therapeutic sessions. This evaluation was based on the MYCAW questionnaire which followed symptom assessment based on the ESAS questionnaire and an open interview with the IP. Leading concerns consisted of gastrointestinal symptoms (9) including nausea/vomiting, digestion, bitter taste, and other mouth symptoms; emotional distress (5); fatigue (5); pain/neuropathy (3); other symptoms. The average degree of concern on a 7-point scale (from 0:
At the conclusion of every initial intake, the IP and the patient defined the integrative medicine treatment goals together. This shared decision-making was regarded by the IP as the climax of the meeting that determined which objectives were both acknowledged and accepted by the patient and could be fully regarded in the formulation of the treatment plan that followed. Common treatment goals accepted by both the patient and the IP in the 15 intakes are as follows: fatigue (12), pain (12—including neuropathy and headache), emotional distress (8—including also the caregiver’s well-being), nausea/vomiting (8) and other gastro-intestinal symptoms (constipation-3, taste alteration (3), mouth sores (1), diarrhea (1), and heartburn (1)), appetite loss (5), difficulty in breathing (4), sleep (4), and others (miscellaneous).
The number of integrative medicine sessions that followed the initial IP intake up to the concluding session varied from 1 (two patients participated only in IP intakes and did not attend further sessions) to 39 (mean 9.06, median 8). In total, 136 integrative medicine sessions have been recorded in the registry protocol for these patients. Typically, various CM modalities were integrated in each of the sessions and were coded according to the main CM modality and its specific technique within this modality (e.g., guided imagery is regarded as
Clinical outcome assessment was mainly based on IP’s and patient’s evaluation performed during the concluding session. Following this session, the IP asked the oncologist to assess the integrative treatment role in the patient’s care, thus adding a third perspective to the concluding evaluation. The extent to which clinical assessment was achieved was graded on three levels:
Analysis of pre- and posttreatment outcomes was performed by comparing baseline and concluding session scores on the MYCAW and ESAS questionnaires. MYCAW scores which reflect patients’ leading concerns, improved from
Within the group of 8 patients (coded in Table
Within the group with deficient assessment and low compliance (4 patients coded as 1, 2, 7, and 14), two of the patients attended only one session (IP intake), whereas the other two attended 2 to 3 sessions. The information regarding the noncompliance of this group of patients is indirect and based on either a telephone interview with the independent researcher following the initial IP intake (patient 4 reporting reluctance towards needle insertion) or interviews with the patients’ oncology nurse (e.g., patient 7: “Although the patient had faith in CM, she was frustrated by the dramatic deterioration in her health and felt that neither chemotherapy nor CM improved her condition”; patient 14: “The patient ignored the severity of her illness. It seems that QOL is not the most important theme for her; she just wished to “taste” CM but not make full use of it”).
Last but not least, the group of 3 patients with partial assessment and moderate to high compliance (patients coded as 3, 10, and 13) may add insight to the perceptions of the other two groups. The number of integrative sessions in this group ranged from 8 to 16 per patient. In contrast to the deficient assessment group, evaluation was available but incomplete. With two of the patients, clinical improvement was either implicit (patient 3 reporting sleep improvement following acupuncture) or explicit (patient 13 reporting that “following needling I felt better in breathing and returned a different person”). In contrast, clinical evaluation of patient 10 is contradictory, as evident in the simultaneous improvement and worsening in MYCAW and ESAS symptoms and the low score in the oncologist’s evaluation.
In this study, we present our experience with Arab patients referred to the IOP with the aim of improving their well-being during chemotherapy for either localized or advanced cancer. The main question we encounter daily is how optimal our communicational and clinical approach is in meeting the needs of Arab patients with cancer who are being treated in the IOP. Our intention was not to compare such aspects between Arab and Jewish patients but rather to understand and acknowledge cross-cultural barriers that potentially hamper optimal integrative care. The hypothesis that potential barriers do exist in provision of complementary therapies among the Arab population was recently supported by Keshet and Ben-Arye who surveyed 58 HMO-related complementary medicine clinics in north Israel [
In our study, we cautiously suggest that a disturbing gap exists between the percentage of Arab patients referred to nurse oncology intakes (19.4%) and those referred ultimately to the IOP (only 7.4% were finally enrolled in the registry protocol), as compared to non-Arab patients.
Although the NOI data includes only i.v. chemotherapy-naive patients and does not necessarily reflect patients treated with oral chemotherapy or for recurrent disease or in a palliative context, the gap between the 103 Arab patients admitted to NOI in the 2-year period and the small group of 15 patients actually enrolled in the registry protocol necessitates further contemplation. What are the reasons for this referral bias? Although further studies are needed to answer this query, four explanatory factors may be hypothesized: (1) patient-related factors (e.g., lack of patient’s interest or belief that CM is beneficial during chemotherapy); (2) culturally-dependent factors (e.g., health-belief model that views cancer treatment in the context of “cure” and survival extension, rather than focusing on QOL aspects); (3) HCP-related factors (e.g., OS health providers speculating that CM may be less appropriate for Arab patients); (4) HMO-related factors (e.g., limited access of Arab patients that live in zone 3, far from Haifa, to the IOP; lack of Arab HCPs within the OS and the IOP staff, which limits communication and complicates matching expectations regarding CM).
The question of barriers in providing integrative care to Arab patients is multifaceted (Table
Potential barriers to CM integration in supportive cancer care of Arab patients in northern Israel and recommendations for bridging the barriers.
Potential Barrier | Recommendation | Practical implications |
---|---|---|
Geographical factor: 68% of the Arab patients receiving chemotherapy reside >20 km from the IOP in Haifa OS | Opening a second site of IOP activity in Haifa periphery (zone 2 or 3) | Minimizing distance-bias may help patients to overcome initial hesitations regarding the first IP visit and enable them to attend weekly CM sessions |
Not having an Arab CM practitioner in the IOP staff | Inclusion of an Arab CM practitioner (preferably a dual practitioner) in the IOP | Improving verbal communication with patients, enhancing the IOP attentiveness to their needs, and concerns and promoting development of traditional Arab-oriented therapies |
Gap between patients’ expectations and IOP objectives and CM repertoire | Increasing IP awareness of patients’ expectations; developing integrative modalities that will resonate more with traditional Arab medicine | Matching patients’ expectations with IP goals of treatment is essential and should be continuously monitored, especially with regard to QOL-oriented care rather than “attacking” cancer cells |
Suboptimal matching of CM modalities to patients’ cultural and religious codes and beliefs | Raising the IP’s and CM practitioner’s awareness of cultural and religious codes within the Arab society | The IOP staff need to consider cultural appropriateness of certain CM modalities (e.g., touch), reluctance concerning unfamiliar treatments (e.g., acupuncture, guided imagery), and gender issues (patient treated by a CM practitioner of the opposite sex, presence of another person in the room, etc.) |
Suboptimal communication between the IOP and the other OS sectors | Improving IP-oncologist-nurse- social worker communication in order to enhance coordinated comprehensive care | Closer monitoring of patient compliance may also reveal the patient’s difficulties and barriers to seeking integrative care |
Lack of communication with the patient’s family physician (FP) | Initiating a structured form of communication with the patient’s FP via summary letter e-mailed from the patient’s medical file | The FP often operates within the cultural milieu of the patients, care givers, and the extended family circle Integrative care-oriented medical education courses are needed to familiarize FPs with the IOP activity |
We support the following recommendations (see Table Location and accessibility of the integrative oncology center is a pivotal aspect, and therefore, IOP should be operated geographically within the minority population. The integrative medicine staff should include a CM practitioner from the cultural minority in order to identify patients’ cultural-related expectations, concerns, and barriers, with the aim of bridging the gap between traditional, complementary, and conventional agendas regarding cancer supportive care. Developing integrative modalities that will resonate more with traditional medicine especially regarding the use of herbs and nutrition in relieving chemotherapy side effects and improving QOL. Raising IPs’ and CM practitioners’ awareness of the patient’s cultural and religious codes and beliefs (e.g., appropriateness of applying manual therapies (including massage and acupuncture) that may be interpreted by patients as immodest). Close monitoring of the patient’s compliance by improving IP-oncologist-nurse-social worker communication regarding the patient’s difficulties and barriers to receiving thorough integrative care. Initiating structured communication with the patient’s family physician, who often operates within the cultural milieu of the patients, care givers, and the extended family circle.
This study is limited by several considerations that may restrict the generalization of our findings to other societies and clinical settings. The group of 15 Arab patients in our registry protocol is small and lacks a control group not receiving integrative care. Thus, clinical outcomes reported in this paper may not strictly reflect the specific effects of CM intervention but also the complex interactions among the following factors: natural history of the disease and treatment-related effects (improvement as well as deterioration caused by chemotherapy) on patients’ quality of life, clinical natural history (e.g., improvement of surgery-related symptoms along the course of time, disease progression causing QOL worsening, etc.), anxiety relief following the patient’s adjustment to treatment, and nonspecific effects of his/her interaction with the IP and CM practitioners (e.g., attention, empathy, professionalism, etc.). However, taking this limitation into account, the comprehensiveness of our methodology provides us with a perspective of real-life patient-tailored settings and the ability to interpret social, cultural, and clinical findings in a broad and complex context, though the researcher’s subjectivity should be kept in mind as potential bias. Another limitation is the lack of data regarding Arab patients with recurrent disease or during palliative care who potentially could have been referred to the IOP. Missing data is also a limiting aspect concerning the registry protocol patients with low compliance. The current study lacks sufficient qualitative research that could shed light on the motives of those Arab patients who discontinue treatment or, on the other hand, those who were highly compliant. Finally, this study is limited to the local features of the Arab community in northern Israel and the local characteristics of the CHS oncology service in Haifa, and the Integrative Oncology Program operated within the OS.
Barriers to integration of CM in the supportive care of Arab patients in northern Israel are multifaceted and include cross-cultural and institutional factors that influence referral and contribute to compliance and clinical outcomes. Bridging cultural gaps and traditional values with regard to CM can assuage patients’ concerns and, ultimately, facilitate an enhanced integrative approach to symptom control resulting in improved quality of life.
The authors thank Professor Efraim Lev, Dr. Ibrahim Hogerat, and Clalit Health Services Research Institute for their contribution in constructing an integrative agenda oriented toward the Arab population. They also thank the following health care providers and medical directors for their contribution to the development of the IOP: Dr. Roni Amar, Professor Ofer Lavie, Dr. Chen Shapira, Ms. Michelle Katz, Ms. Judith Tapiro, Ms. Haya Vintal, Ms. Olga Agour, Ms. Michal Pereg, Ms. Haviva Kol, Ms. Avital Stanger, and Ms. Dikla Krieger, and Ms. Marianne Steinmetz for editing the paper.