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Development and Pilot Test of a Culturally Relevant Toolkit to Enhance Advance Care Planning With Chinese American Patients

Dhingra, Lara; Lam, Kin; Cheung, William; Hynes, Gavin; Fleming-Damon, Colleen; Hicks, Stephanie; Huang, Philip; Chen, Jack; Chang, Victor; Portenoy, Russell
BACKGROUND:First-generation Chinese American patients have low engagement in advance care planning (ACP). Among the causes may be clinician uncertainty about traditional cultural values. AIM:Based on a survey identifying barriers to ACP among older ethnic Chinese American patients, we created a toolkit to support clinicians in culturally relevant ACP practices and conducted a pilot test to evaluate usability, acceptability, and preliminary outcomes. DESIGN/SETTING/PARTICIPANTS:The toolkit includes culturally relevant information and an ACP guideline with a prompt list of questions. Six clinicians (three physicians, two nurse practitioners, and one physician assistant) in two New York City-based practices piloted the toolkit through discussions with 66 patients. RESULTS:Patients' age averaged 70.2 years (SD=12.4); 56.1% were women. Almost two-thirds had not finished high school and 53.0% spoke only Cantonese. More than three-quarters (78.8%) did not understand the purpose of ACP before the discussion. During the discussion, 58 patients (87.9%) completed a new proxy naming a health care agent, 21 (31.8%) requested a nonhospital DNR order, and two (3%) completed a living will. Topics discussed included treatment preferences (discussed with 80.3% of patients); health care values (77.3%); treatment decisions (72.7%); goals of care (68.2%), and hospice (1.5%). Five of the six clinicians expressed satisfaction ("very" or "somewhat") with the toolkit, four were "very" comfortable using it, and three stated that it helped them "a lot" with effective discussions. CONCLUSIONS:An ACP toolkit may facilitate culturally relevant ACP discussions by increasing clinician competency and patient engagement. Further studies of this approach are needed.
PMID: 33652094
ISSN: 1873-6513
CID: 5387642

Attitudes and Beliefs Towards Advance Care Planning among Underserved Chinese-American Immigrants

Dhingra, Lara; Cheung, William; Breuer, Brenda; Huang, Philip; Lam, Kin; Chen, Jack; Zhou, Xiaotian; Chang, Victor; Chui, Timothy; Hicks, Stephanie; Portenoy, Russell
CONTEXT/BACKGROUND:Many in the rapidly-growing Chinese-American population are non-English-speaking and medically-underserved, and few engage in advance care planning (ACP). Evaluating culturally-determined factors that may inhibit ACP can inform programs designed to increase ACP engagement. OBJECTIVES/OBJECTIVE:To describe attitudes and beliefs concerning ACP in older, non-English speaking Chinese-Americans in a medically-underserved urban region. METHODS:Patients were consecutively recruited from a primary care practice in New York City to participate in a cross-sectional survey. Attitudes and beliefs were measured using an ACP Survey tool and the validated Traditional Chinese Death Beliefs measure. Exploratory analyses evaluated associations between these two measures, and between each measure and sociodemographics, primary dialect, acculturation (using The Suinn-Lew Asian Self Identity Acculturation Scale), and health status (using the Short Form-8 Health Survey). RESULTS:Patients (n=179) were 68.2 years on average; 55.9% were women, and 81.0% were non-English speaking (42.8% Cantonese, 15.2% Mandarin, 19.3% Toisanese, 19.3% Fuzhounese). Most had low acculturation (mean=1.7/5.0), and highly-rated physical and mental health (means=70.1/100 and 81.5/100). Few patients (15.1%) had an advance directive and 56.8% were unfamiliar with any type; 74.4% were willing to complete one in the future. Thirty-two percent "agreed" that "talking about death in the presence of a dying person would accelerate death". The analyses revealed no significant associations. CONCLUSION/CONCLUSIONS:These Chinese-American older adults had low acculturation and very limited knowledge of, or engagement in, ACP. Factors that may predict culturally-determined attitudes and beliefs about ACP were not identified. Further research can inform efforts to improve ACP engagement in this population.
PMID: 32335203
ISSN: 1873-6513
CID: 4411692

Variation in symptom distress in underserved Chinese American cancer patients

Dhingra, Lara K; Lam, Kin; Cheung, William; Shao, Theresa; Li, Zujun; Van de Maele, Sandra; Chang, Victor T; Chen, Jack; Ye, Huiyan; Wong, Rhoda; Lam, Wan Ling; Chan, Selina; Bookbinder, Marilyn; Dieckmann, Nathan F; Portenoy, Russell
BACKGROUND: Cancer is prevalent in the rapidly growing Chinese American community, yet little is known about the symptom experience to guide comprehensive treatment planning. This study evaluated symptom prevalence and patient subgroups with symptom distress in a large sample of Chinese American cancer patients. METHODS: Patients were consecutively recruited from 4 oncology practices, and they completed a translated cancer symptom scale. Latent class cluster analysis was used to identify subgroups of patients with distinct symptom distress profiles. RESULTS: There were 1436 patients screened; 94.4% were non-English-speaking, and 45.1% were undergoing cancer therapy. The cancers included breast (32.6%), lung (14.8%), head and neck (12.5%), and hematologic cancer (10.1%). Overall, 1289 patients (89.8%) had 1 or more symptoms, and 1129 (78.6%) had 2 or more. The most prevalent symptoms were a lack of energy (57.0%), dry mouth (55.6%), feeling sad (49.3%), worrying (47.5%), and difficulty sleeping (46.8%). Symptoms causing "quite a bit" or "very much" distress included difficulty sleeping (37.9%), a lack of appetite (37.2%), feeling nervous (35.8%), pain (35.2%), and worrying (34.0%). Four patient subgroups were identified according to the probability of reporting moderate to high symptom distress: very low physical and psychological symptom distress (49.5%), low physical symptom distress and moderate psychological symptom distress (25.2%), moderate physical and psychological symptom distress (17.4%), and high physical and psychological symptom distress (7.8%). CONCLUSIONS: Symptom prevalence is high in community-dwelling Chinese American cancer patients, and nearly half experience severe distress (rated as "quite a bit" or "very much" distressing) from physical symptoms, psychological symptoms, or both. These data have important implications for the development of effective symptom control interventions. Cancer 2015. (c) 2015 American Cancer Society. Cancer 2015;121:3352-3359. (c) 2015 American Cancer Society.
PMID: 26059972
ISSN: 1097-0142
CID: 1802262

A COMMUNITY-BASED, QUALITY IMPROVEMENT INTERVENTION FOR SYMPTOM CONTROL IN CHINESE AMERICAN CANCER PATIENTS [Meeting Abstract]

Dhingra, Lara; Lam, Kin; Cheung, William; Shao, Theresa; Li, Zujun; Van de Maele, Sandra; Chang, Victor; Chen, Jack; Ye, Huiyan; Wong, Rhoda; Lam, Wan; Chan, Selina; Bookbinder, Marilyn; Portenoy, Russell
ISI:000334408301077
ISSN: 1532-4796
CID: 1802432

Symptom distress and symptom clusters in underserved Chinese-American cancer patients

Dhingra, Lara; Lam, Kin Y; Cheung, William; Shao, Theresa H; Li, Zujun; Van de Maele, Sandra; Chang, Victor Tsu-Shih; Chen, Jack; Ye, Huiyan; Wong, Rhoda; Lam, Wan; Chan, Selina; Bookbinder, Marilyn; Dieckmann, Nathan; Portenoy, Russell
27 Background: Cancer is prevalent in the rapidly-growing Chinese-American community, yet little is known about symptom burden to guide comprehensive treatment planning. We evaluated symptom distress and symptom clusters in a large sample of Chinese-American patients with cancer. METHODS: Patients were consecutively recruited from four oncology practices and completed a translated cancer symptom scale. Latent class cluster analysis explored symptom distress clusters in patients. RESULTS: Of 1,436 patients screened, 94.4% were non-English speaking and 45.1% were undergoing active cancer therapy. The most common cancer sites were breast (32.6%), lung (14.8%), head and neck (12.5%), and hematologic (10.1%). Overall, 1,289 (89.8%) patients had > 1 symptom and 1,129 (78.6%) patients had > 2. The most prevalent symptoms were lack of energy (57.0%), dry mouth (55.6%), feeling sad (49.3%), worrying (47.5%), and difficulty sleeping (46.8%). Symptoms causing "quite a bit" or "very much" distress included: difficulty sleeping (37.9%), lack of appetite (37.2%), feeling nervous (35.8%), pain (35.2%), and worrying (34.0%). Four symptom distress clusters were identified: very low physical and psychological symptom distress (49.5%); very low physical and moderate psychological symptom distress (25.2%); moderate physical and psychological symptom distress (17.4%), and high physical and psychological symptom distress (7.8%). Patients in the last group reported lack of energy, difficulty sleeping, pain, feeling sad, and worrying. CONCLUSIONS: Symptom prevalence is high in community-dwelling, Chinese-American cancer patients and half experience moderate to high distress from clusters of physical symptoms, psychological symptoms, or both. These data have important implications for the development of effective interventions for symptom control.
ORIGINAL:0013186
ISSN: 1527-7755
CID: 3590042

Quality improvement for symptom control in underserved Chinese cancer patients [Meeting Abstract]

Dhingra, Lara; Lam, Kin Y.; Cheung, William; Shao, Theresa; Chang, Victor Tsu-Shih; Chen, Jack; Cheng, Sabrina; Li, Vanessa; Lam, Wan; Chan, Selina; Bookbinder, Marilyn; Lo, Graciete; Portenoy, Russell
ISI:000208943900132
ISSN: 0732-183x
CID: 3589722

The prevalence and burden of cancer symptoms among underserved Chinese American patients [Meeting Abstract]

Dhingra, Lara; Lam, Kin Y.; Cheung, William; Shao, Theresa; Chang, Victor Tsu-Shih; Chen, Jack; Cheng, Sabrina; Li, Vanessa; Lam, Wan; Chan, Selina; Bookbinder, Marilyn; Lo, Graciete; Portenoy, Russell
ISI:000208943900106
ISSN: 0732-183x
CID: 3589822