Original Article
The Study on Evaluation and Improvement of Quality of Life in Patients With Advanced Cancer by China’s Hospice Program
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(4) 365-371 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114523331 ajhpm.sagepub.com
Di Deng, MD1*, Weider Lin, MSc2*, and Frieda Law, MD3
Abstract This multicenter study evaluated the quality of life (QOL) of patients with advanced cancer and assessed the improvement in patients’ QOL by hospice service program, using McGill Quality of Life Questionnaire-Hong Kong version (MQOL-HK) questionnaire in China’s 32 hospice centers from March to June, 2012. Among 640 recruited cases, data of 630 patients were analyzed. Differences in patients’ pre- and posthospice QOL were evaluated. Compared to prehospice results, patients’ QOL scores improved significantly in physical, psychological, existential, and support domains after 3 weeks of hospice services. Some items were not thus classified primarily due to cross-cultural adaptation. The MQOL-HK questionnaire could effectively measure QOL in Chinese hospice patients and their QOL could be improved by hospice services. Psychological, existential, and support services should be emphasized during patients’ initial 3 weeks of hospice admission. Keywords quality of life, patients with advanced cancer, hospice program, McGill-HK quality of life questionnaire, China
Introduction The National Central Cancer Registry of 2012 in China estimated that 3.5 million new cancer cases are diagnosed annually and more than 2.5 million patients with cancer die each year.1 When patients face problems associated with having a life-threatening illness, palliative care is intended to improve quality of life (QOL) for patients and their families.2 The QOL status of patients with advanced cancer is also considered to be the main outcome measure for palliative care services.3 Hospice, as a special phase of palliative care, provides interprofessional and multidimensional care for patients with advanced cancer and their families.4 In order to ensure achieving good hospice outcomes, QOL evaluations may be especially useful in determining patients’ needs and may also benefit the development of individual care plans. To adequately represent hospice patients’ QOL, outcome measures must not only assess the physical, psychological, and social aspects of patients’ lives but also reflect the specific goals of hospice, including improving patients’ well-being as they approach death and supporting the family through the dying process.5 Therefore, it is important that both specific aspects and associated aspects are included in the QOL framework, especially when evaluating patients’ QOL status. The McGill Quality of Life Questionnaire (MQOL), which was originally developed and validated in Canada, is a multidimensional questionnaire that measures QOL in 4 domains: physical, psychological, existential well-being, and social support.6
Studies agreed that these comprehensive domains made it particularly suitable for QOL assessment in hospice care because it demonstrated good content validity, construct validity, internal consistency, and good reliability according to results of other previous studies.5-8 The single item score (SIS) was useful to indicate patients’ distress levels and could be selfcompleted.6 Moreover, the existential domain that identified aspects of patients’ purpose, meaning in life, and their capacity for personal growth and transcendence could be measured.9 As a cross-culturally validated QOL instrument, a translated and slightly modified version of MQOL was developed for use among the Hong Kong Chinese (MQOL-HK), and it was verified to be relevant and applicable for use within the Chinese culture.10 The MQOL-HK questionnaire instrument was derived from informal patient interviews, literature reviews, and existing instruments, and included 17 items (16 items and
1
Department of Radiation and Medical Oncology, Zhongnan Hospital, Wuhan University, Wuhan, China 2 Li Ka Shing Foundation National Hospice Service Program, Shantou University Medical College, Shantou, China 3 Li Ka Shing Foundation, Shantou, China * Co-first author Corresponding Author: Frieda Law, MD, Li Ka Shing Foundation, Consultant of Shantou University Medical College, 22 Xinling Road, Shantou, 515041, China. Email: [email protected]
Downloaded from ajh.sagepub.com at University of Otago Library on June 4, 2016
American Journal of Hospice & Palliative Medicine® 32(4)
366 a single item rating overall QOL). In that questionnaire, 4 items, including ‘‘feeling close to people,’’ ‘‘having face,’’ ‘‘eating,’’ and ‘‘sex,’’ are important components of Chinese culture and might influence the measurement of Chinese patients’ QOL. Based on correlations between the MQOL-HK subscale scores and total score with SIS, different items were recategorized within the 4 domains as follows: (1) the physical domain, which includes physical symptoms, physical well-being, and eating; (2) the psychological domain, which covers feeling depressed, nervousness, worried, sad, or fearful, and ‘‘having face’’; (3) the existential well-being domain, which consists of the meaning of existence, life goals, feeling life to be worthwhile, level of self-content, and seeing life as a burden; and (4) the support domain, which covers aspects such as feeling supported and the world is caring. The sex domain relates to aspect of sexual life alone. Identifying areas of patients’ distress, providing individualized care, and evaluating the efficacy of hospice services are common concerns in hospice programs. The purpose of this study was to assess the efficacy of mainland China’s hospice program for patients with advanced cancer and evaluate the assessment ability of the MQOL-HK questionnaire to determine whether it can be applied to address such concerns. Results of this study may contribute to confirming the areas of most distress among Chinese patients in hospice care and guiding hospice program services by applying a practical QOL questionnaire to help ensure better QOL for patient during end-of-life care.
Methods Study Design This was a multicenter, before/after, comparative study conducted in 32 centers of the Chinese national hospice service program, Li Kashing Foundation. It aimed to measure the QOL of Chinese hospice patients and to assess the quality of hospice services based on the differences in QOL before and after patients received hospice services. The QOL measurements were completed by self-reported questionnaire at the time each patient was newly admitted to hospice (prehospice) and again 3 weeks later (posthospice) after admission and receiving hospice services.11 All these measurements were carried out when the pain was adequately controlled. Hospice services were provided at each center by a multidisciplinary team, including physicians, nurses and hospice social workers, and services included free physical examination, psychological, and spiritual services, which were offered at patients’ homes. Patients who were recruited into this study received regular weekly home visits from the team. The multidisciplinary team visited patients to assess their needs based on evaluation at the prehospice evaluation and to provide them with comprehensive whole-person care. Caregivers or their families were usually trained to assist patients. The MQOL-HK questionnaire10 was selected as the QOL measurement instrument, which would be self-reported by patients during their interviews. The questionnaire and its explanation were copyrighted in 2001 by Dr Raymond Lo at the Chinese University of Hong Kong. All
recruited patients at each center were interviewed by a unified and qualified hospice team that was trained on using the MQOL-HK questionnaire. The MQOL-HK was read by the patient without assistance, if possible, or was otherwise read out aloud by hospice team members. Any queries on the questionnaire items were explained. All item scores were rated by patients themselves. In the self-reported tool, all items were scored from 0 to 10, with 0 representing the most desirable situation and 10 the least desirable. The scores of each of the 4 domains, including physical, psychological, existential well-being, and support, were computed using the 16 items categorized for the MQOL-HK questionnaire.
Patient Sample The hospice patients who were recruited into this study were newly admitted to hospice centers. From March 2012 to June 2012, 640 consecutive newly admitted patients in the 32 hospice centers were recruited, 20 cases from about 150 newly admitted patients during the 4 months in each hospice center. They included those with low socioeconomic status, lingering pain, and no desire for any active cancer treatment except for self-delivered or easily administrated pain medication at home (hospice home care). The eligible criteria for inclusion were more than 18 years old, expected survival of more than 30 days, aware of their conditions, able to read Chinese, and willing to complete the survey. Patients with psychological disorders or performance status that may hamper completion of the questionnaire were excluded. During the first interview, the purpose of the study was explained to patients and their informed voluntary consent was obtained. The demographic data contained in the MQOL-HK questionnaire were collected from their families at prehospice evaluation. The data were written down in the document.
Statistical Analysis The analysis consisted of 3 components. First, to verify the items covering different potential domains, the principal components method with orthogonal varimax rotation of factor analysis was used to evaluate all MQOL-HK item scores. Based on the underlying concept of palliative care described by the World Health Organization (WHO),2 potential domains, as in the MQOLHK, were divided into 4 categories, including physical domain, psychological domain, existential well-being domain, and social support domain. They were derived by grouping together those items with highest loading for each resulting factor. Second, to identify the associations between items and patients’ distress, the means and standard deviations of each item score in the MQOL-HK were determined. Third, the item scores of the questionnaire were calculated as the mean of the scores on the subordinate items. Then, to evaluate the effects of hospice services, the paired sample t test was utilized to compare the preand posthospice means of each domain and items in MQOL-HK. The Statistical Package for Social Scientists (SPSS/Win, v.9.0, SPSS, Chicago, Illinois) was used for all analyses and P < .05 was considered as statistically significant.
Downloaded from ajh.sagepub.com at University of Otago Library on June 4, 2016
Deng et al
367
Table 1. Major Demographic and Clinical Characteristics of 630 Hospice Patients. Patient characteristic Gender Male Female Age
The Study on Evaluation and Improvement of Quality of Life in Patients With Advanced Cancer by China’s Hospice Program
American Journal of Hospice & Palliative Medicine® 2015, Vol. 32(4) 365-371 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1049909114523331 ajhpm.sagepub.com
Di Deng, MD1*, Weider Lin, MSc2*, and Frieda Law, MD3
Abstract This multicenter study evaluated the quality of life (QOL) of patients with advanced cancer and assessed the improvement in patients’ QOL by hospice service program, using McGill Quality of Life Questionnaire-Hong Kong version (MQOL-HK) questionnaire in China’s 32 hospice centers from March to June, 2012. Among 640 recruited cases, data of 630 patients were analyzed. Differences in patients’ pre- and posthospice QOL were evaluated. Compared to prehospice results, patients’ QOL scores improved significantly in physical, psychological, existential, and support domains after 3 weeks of hospice services. Some items were not thus classified primarily due to cross-cultural adaptation. The MQOL-HK questionnaire could effectively measure QOL in Chinese hospice patients and their QOL could be improved by hospice services. Psychological, existential, and support services should be emphasized during patients’ initial 3 weeks of hospice admission. Keywords quality of life, patients with advanced cancer, hospice program, McGill-HK quality of life questionnaire, China
Introduction The National Central Cancer Registry of 2012 in China estimated that 3.5 million new cancer cases are diagnosed annually and more than 2.5 million patients with cancer die each year.1 When patients face problems associated with having a life-threatening illness, palliative care is intended to improve quality of life (QOL) for patients and their families.2 The QOL status of patients with advanced cancer is also considered to be the main outcome measure for palliative care services.3 Hospice, as a special phase of palliative care, provides interprofessional and multidimensional care for patients with advanced cancer and their families.4 In order to ensure achieving good hospice outcomes, QOL evaluations may be especially useful in determining patients’ needs and may also benefit the development of individual care plans. To adequately represent hospice patients’ QOL, outcome measures must not only assess the physical, psychological, and social aspects of patients’ lives but also reflect the specific goals of hospice, including improving patients’ well-being as they approach death and supporting the family through the dying process.5 Therefore, it is important that both specific aspects and associated aspects are included in the QOL framework, especially when evaluating patients’ QOL status. The McGill Quality of Life Questionnaire (MQOL), which was originally developed and validated in Canada, is a multidimensional questionnaire that measures QOL in 4 domains: physical, psychological, existential well-being, and social support.6
Studies agreed that these comprehensive domains made it particularly suitable for QOL assessment in hospice care because it demonstrated good content validity, construct validity, internal consistency, and good reliability according to results of other previous studies.5-8 The single item score (SIS) was useful to indicate patients’ distress levels and could be selfcompleted.6 Moreover, the existential domain that identified aspects of patients’ purpose, meaning in life, and their capacity for personal growth and transcendence could be measured.9 As a cross-culturally validated QOL instrument, a translated and slightly modified version of MQOL was developed for use among the Hong Kong Chinese (MQOL-HK), and it was verified to be relevant and applicable for use within the Chinese culture.10 The MQOL-HK questionnaire instrument was derived from informal patient interviews, literature reviews, and existing instruments, and included 17 items (16 items and
1
Department of Radiation and Medical Oncology, Zhongnan Hospital, Wuhan University, Wuhan, China 2 Li Ka Shing Foundation National Hospice Service Program, Shantou University Medical College, Shantou, China 3 Li Ka Shing Foundation, Shantou, China * Co-first author Corresponding Author: Frieda Law, MD, Li Ka Shing Foundation, Consultant of Shantou University Medical College, 22 Xinling Road, Shantou, 515041, China. Email: [email protected]
Downloaded from ajh.sagepub.com at University of Otago Library on June 4, 2016
American Journal of Hospice & Palliative Medicine® 32(4)
366 a single item rating overall QOL). In that questionnaire, 4 items, including ‘‘feeling close to people,’’ ‘‘having face,’’ ‘‘eating,’’ and ‘‘sex,’’ are important components of Chinese culture and might influence the measurement of Chinese patients’ QOL. Based on correlations between the MQOL-HK subscale scores and total score with SIS, different items were recategorized within the 4 domains as follows: (1) the physical domain, which includes physical symptoms, physical well-being, and eating; (2) the psychological domain, which covers feeling depressed, nervousness, worried, sad, or fearful, and ‘‘having face’’; (3) the existential well-being domain, which consists of the meaning of existence, life goals, feeling life to be worthwhile, level of self-content, and seeing life as a burden; and (4) the support domain, which covers aspects such as feeling supported and the world is caring. The sex domain relates to aspect of sexual life alone. Identifying areas of patients’ distress, providing individualized care, and evaluating the efficacy of hospice services are common concerns in hospice programs. The purpose of this study was to assess the efficacy of mainland China’s hospice program for patients with advanced cancer and evaluate the assessment ability of the MQOL-HK questionnaire to determine whether it can be applied to address such concerns. Results of this study may contribute to confirming the areas of most distress among Chinese patients in hospice care and guiding hospice program services by applying a practical QOL questionnaire to help ensure better QOL for patient during end-of-life care.
Methods Study Design This was a multicenter, before/after, comparative study conducted in 32 centers of the Chinese national hospice service program, Li Kashing Foundation. It aimed to measure the QOL of Chinese hospice patients and to assess the quality of hospice services based on the differences in QOL before and after patients received hospice services. The QOL measurements were completed by self-reported questionnaire at the time each patient was newly admitted to hospice (prehospice) and again 3 weeks later (posthospice) after admission and receiving hospice services.11 All these measurements were carried out when the pain was adequately controlled. Hospice services were provided at each center by a multidisciplinary team, including physicians, nurses and hospice social workers, and services included free physical examination, psychological, and spiritual services, which were offered at patients’ homes. Patients who were recruited into this study received regular weekly home visits from the team. The multidisciplinary team visited patients to assess their needs based on evaluation at the prehospice evaluation and to provide them with comprehensive whole-person care. Caregivers or their families were usually trained to assist patients. The MQOL-HK questionnaire10 was selected as the QOL measurement instrument, which would be self-reported by patients during their interviews. The questionnaire and its explanation were copyrighted in 2001 by Dr Raymond Lo at the Chinese University of Hong Kong. All
recruited patients at each center were interviewed by a unified and qualified hospice team that was trained on using the MQOL-HK questionnaire. The MQOL-HK was read by the patient without assistance, if possible, or was otherwise read out aloud by hospice team members. Any queries on the questionnaire items were explained. All item scores were rated by patients themselves. In the self-reported tool, all items were scored from 0 to 10, with 0 representing the most desirable situation and 10 the least desirable. The scores of each of the 4 domains, including physical, psychological, existential well-being, and support, were computed using the 16 items categorized for the MQOL-HK questionnaire.
Patient Sample The hospice patients who were recruited into this study were newly admitted to hospice centers. From March 2012 to June 2012, 640 consecutive newly admitted patients in the 32 hospice centers were recruited, 20 cases from about 150 newly admitted patients during the 4 months in each hospice center. They included those with low socioeconomic status, lingering pain, and no desire for any active cancer treatment except for self-delivered or easily administrated pain medication at home (hospice home care). The eligible criteria for inclusion were more than 18 years old, expected survival of more than 30 days, aware of their conditions, able to read Chinese, and willing to complete the survey. Patients with psychological disorders or performance status that may hamper completion of the questionnaire were excluded. During the first interview, the purpose of the study was explained to patients and their informed voluntary consent was obtained. The demographic data contained in the MQOL-HK questionnaire were collected from their families at prehospice evaluation. The data were written down in the document.
Statistical Analysis The analysis consisted of 3 components. First, to verify the items covering different potential domains, the principal components method with orthogonal varimax rotation of factor analysis was used to evaluate all MQOL-HK item scores. Based on the underlying concept of palliative care described by the World Health Organization (WHO),2 potential domains, as in the MQOLHK, were divided into 4 categories, including physical domain, psychological domain, existential well-being domain, and social support domain. They were derived by grouping together those items with highest loading for each resulting factor. Second, to identify the associations between items and patients’ distress, the means and standard deviations of each item score in the MQOL-HK were determined. Third, the item scores of the questionnaire were calculated as the mean of the scores on the subordinate items. Then, to evaluate the effects of hospice services, the paired sample t test was utilized to compare the preand posthospice means of each domain and items in MQOL-HK. The Statistical Package for Social Scientists (SPSS/Win, v.9.0, SPSS, Chicago, Illinois) was used for all analyses and P < .05 was considered as statistically significant.
Downloaded from ajh.sagepub.com at University of Otago Library on June 4, 2016
Deng et al
367
Table 1. Major Demographic and Clinical Characteristics of 630 Hospice Patients. Patient characteristic Gender Male Female Age
