Unmet supportive care needs in Asian women with breast cancer. Richard Fielding Division of Behavioural Sciences School of Pubic Health, HKU

Transcription

1 Unmet supportive care needs in Asian women with breast cancer Richard Fielding Division of Behavioural Sciences School of Pubic Health, HKU

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4 Service Access and affordability Remoteness Insurance coverage Low education Manpower Medical/nursing training CS training Public relations Issues of stigma around mental health Recruiting peer professional support amid resource constraints

5 Consultation issues: Workload Communication limitations Lack of privacy Nursing issues: Professional hierarchy Workload

6 Some widespread beliefs about cancer Advance cancer patients are more psychologically distressed than patients with early stage cancers; Not telling patients they have cancer protects them from giving up hope and dying earlier; Supportive care needs reflect individual coping failure

7 Advance cancer patients are more psychologically distressed than patients with early stage cancers x Untrue women are often distressed initially, but adapt often quite quickly

8 Not telling patients they have cancer protects them from giving up hope and dying earlier No evidence for this, but widely held belief across Asia, esp. China. Consequence is family stress is often great, dishonesty and deceit are required. Impossible to provide effective care Most patients want to know and do know.

9 Supportive care needs reflect individual coping failure Evidence shows systematic similarities and differences in patterns of SCNs by different national groups and cancer types suggesting that culture and service difference account for more variation than does disease type:

10 USCNs in CRC patients in 3 countries Predictors Unmet SC need domains Patient s Age (younger) Full-time occupation Active treatment Advanced stage Chinese (HK)* Japanese* HSI Psychological Care & support Physical & daily living Sexuality Quality of Life * Referent Taiwanese Symptom Load

11 USCN in Korean BC patients Park BW, Hwang SY, Yonsei Med J, 2012

12 Comparing patients with same cancers, but from different cultures, and with different health services USCN Japan CRC * Taiwan CRC ** HK CRC + Japan BC *** German BC % 5 49% 1 63% 7 48% 3 51% 9 40% 7 45% HK BC + Iran BC # Korea BC $ Japan ABC +++ Fears of cancer spread >18 > Concerned about worries of close others > Anxiety >18 > Worry treatment results beyond control > Uncertainty about future > >18 > Informed about things to do to get well Feelings about death, dying >18 > Unable to do things I used to do > > HK ABC $$ Feeling down, depressed > Keep positive outlook > >18 > One member of hospital staff to > talk to about all - of your care *Okuyama, Wada, **Shiao, Lai, in Fielding et al 2013, PloS One; *** Akechi et al, 2011, Psycho-Oncol; + Li et al, 2012; ++ Lam et al, 2011 BCRT; ++ Uchida et al, 2010; $ Park & Hwang, 2012; $$ Au et al, 2011; # Rahmani et al, 2014

13 USCN Ordered by descending similarity of USCN HK BC* HK CRC* * Korea BC $ Iran BC # S/Pore BC + Taiwan CRC ** Japan ABC++ Japan BC +++ One staff to talk to about all aspects of care >10 16 Informed about things to do to get well Informed ca is under control/diminishing >10 12 >10 >10 13 Japan CRC ** Written information on important aspects of care 4 5 > >10 >10 20 Informed about test results asap >10 11 >10 >10 22 Explanations of tests >10 7 >10 >10 17 Information on managing illness and side - effects Informed about benefits, side effects of Rx before having them >10 > >10 10 >10 >10 21 Access to counseling, if needed > >10 >10 18 Acknowledge & show sensitivity to feelings 10 9 >10 >18 >10 28 >10 >10 26 * Li et al, 2012; **Fielding et al, 2013; $ Park & Hwang, 2012; # Rahmani et al, 2012; + Cheng et al, 2014 ;+++ Uchida et al, 2010; +++Akechi et al, 2011

14 USCN HK 1 HK ABC 2 Kore a 3 Ira n 4 Ira n 5 S/Por e 6 Japan 7 Japan ABC 8 Viet nam 9 India 10 Taiwan 11 Sarawak 12 One staff to talk to about all aspects of care Informed about things to do to get well Informed ca is under control/diminishing Written information on important aspects of care Informed about test results asap Explanations of tests Information on managing illness and side-effects at home Informed about benefits, side effects of Rx before having them Access to counseling, if needed Acknowledge & show sensitivity to feelings Li et al, 2012; 2. Au et al, 2011; 3 Park & Hwang, 2012; 4 Rahmani et al, 2012; 5 Abdollahzadeh et al 2014; 6 Cheng et al, 2014; 7 Akechi et al 2011 ; 8 Uchida et al, 2011; 9 Nguyen et al, 2013; 10 Chittem et al (unpublished); 11 Liao et al 2016., 12. Fong & Cheah, 2016.

15 Evolution of USCNs in women with ABC 228/276 Chinese women newly diagnosed with ABC recruited from six public oncology units and completed interview before first chemotherapy course, and follow-up interviews at 6-, 12-, 18- weeks, and 12 months subsequently. Most women showed stable low levels of HIS (79%), Psychological (82%), PDL (84%), and Sexuality (97%) supportive care needs. One in five and one in eight women showed high initial needs in HIS, Psychological, and PDL domains, respectively. With the exception of Sexuality needs, trajectory patterns were predicted by physical symptom distress. Lam et al, 2013

16 216 advanced cancer patients. 31% depressed mood (HADS-D >8) -had higher frequency of drowsiness (64%), nausea (66%), pain (94%), dypsnoea (86%), poor appetite (91%), worse well- being (99%) and higher symptom intensity. 44% anxious (HADS-A >8), -had higher nausea (57%), pain (89%), dypsnoea (86%), and more intense pain, fatigue, dypsnoea and poorer appetite. These patients were all in palliative care settings at the time of data collection.

17 Pain prevalence in Korea From 8 university hospitals, 655 patients with advanced cancer. Analgesics prescribed from the medical records. Physicians, nurses and caregivers estimated patients' pain. The Korean Brief Pain Inventory and the Barrier Questionnaire were completed by the patients. 70.8% (464 of 655)of patients reported pain. Among those who had pain, 63.6% (295 of 464) reported pain rated 5 or higher on a 0 10 scale. Thirty-nine percent of the patients had not received any analgesics and 53.2% were not receiving optimal pain management. Cancer pain was more poorly managed in advanced cancer than terminal cancer patients (OR:3.20, 95%C.I, ), in patients with better performance(or:3.17, 95%C.I, ), and in those patients whose pain was underestimated by the doctor (OR:2.58, 95%C.I ). Young HY et al, 2002DOI:

18 120 advanced cancer patients, HADS-T and EORTC QLQ 30 with symptoms. HADS-T scores predominantly associated with emotional functioning scales of QLQ30. In turn, both HADS-T and QLQ30 associated with nausea-vomiting, dyspnoea, sleep disturbance, Anxiety associated with physical, role, cognitive, emotional, and social functioning, dyspnoea, sleep disturbance, and appetite loss; Depression was predicted by physical, role, emotional, and social functioning, the symptoms of nausea-vomiting, pain, sleep disturbance, constipation, age, gender, anticancer treatment and performance status.

19 Design, setting and participants: A descriptive study of 266 consecutive patients at a range of inpatient and outpatient settings including home care, hospices, and private and tertiary care hospitals in WA and NSW from 1 March to 30 June Main outcome measures: Self-reported anxiety and depression using the Hospital Anxiety and Depression Scale (HADS) at a cut-off score of 8 on each subscale (depression and anxiety) for possible cases, and of 11 for probable cases; a cut-off score of 19 was used for probable combined depression and anxiety Results: Patients included 200 in WA and 66 in NSW. For the whole sample, 45.8% of patients were possibly depressed and 22.7% probably depressed; 36.9% were possibly anxious and 19.8% probably anxious. About 25% of patients had probable combined depression and anxiety. Logistic regression analyses indicated that past anxiety in the family predicted probable depression, while age, marital status and past depression predicted probable anxiety. Age and past depression predicted probable combined depression and anxiety.

20 Anxiety/depression/distress China 1 (1,217) China 2 Malaysia 4 (168) S/pore 3 (315 ) Korea 5 32,662 Brit Columb 10,153 Anxiety 6.5% 50% 32% 9.5% 19% Depression 66.7% 55% (both) 16% 10.1% 13% Distress 51% Swee n 1. Hong & Tian, 2014, Supportive Care Ca. (mixed) 2. Yang YL et al, 2013, BMC Cancer (SR17 studies, 3,500 pt) 3. Tan et al, 2014, Asian J Psychiat oncology in pt; 4. Zainal et al, 2007 A J Clin Oncol chemother 5. Park et al 2014 EMSO Pro NationaI insurance record assessment 6. Linden et al, 2012 J Affect Dis. Routinely screened ca patients

21 Distress trajectory (Baseline-8month FU) predictors of 6 year PO morbidity. 6-year outcome variables, HK women with early stage breast cancer.

22 Korean nurse perceptions of USCN Most nurses report need for, but insufficient time to provide symptom care; That rehabilitation or symptom management services are lacking; That there is a lack of suitable tools for assessing need; Anticipatory approach to symptom management needed. Park, Chung & Shin, 2012 DOI:

23 LMICs